Sign in

Showing all posts by "Ben"

Home  >  Forums  >  Showing all posts by "Ben"

Posted in Energy Drinks Oxygen & others on 02 Feb, 2012 - 9:21 am

When I was taking Topiramate (Topamax), I thought I had gout as the metatarsal-phalangeal joint at the base of my big toe had me in absolute agony. I had been told to watch out for "The disease of Kings" (Gout) when taking Topamax.
As it turns out, I had injured my toe joint through RSI by driving manual vehicles with a very heavy clutch pedal. My CH specialist once mentioned to me that the intense pain associated with gout could be somewhat comparable to pain from CH. Having never had gout, I could not say for sure. My specialist has never had a CH attack either, so who can really compare anyway? I suppose you can Bluey!
Which is worse? My bet it is CH.

I was made aware that certain medications like Topiramate can reduce your body's ability to conentrate urine, thus leaving uric acid to circulate in the body and crystallise in the joints.
I have never tried a red bull either, so am ill informed on just what it may do to me. I dodge it for heart reasons.
It looks like Energy drinks are becoming the subject of scrutiny and debate as calls to the poisons information centre in relation to energy drinks have reportedly increased:

Lots of water (at least 2L per day) is the way to go for any headache condition - a recommendation I can make!
Dehydration is my enemy!

Still, relief is where you find it...

Cheers, Ben.

Posted in Occipital Nerve Stimulation on 01 Feb, 2012 - 4:26 pm

Excellent link Sara, for sure. There are some imaging techniques there I had not heard of - off on another research tangent for me then! Really good to see someone else with an inquisitive mind looking for answers and posting them here. It is a task sifting all this stuff for relevance, ain't that the truth. Thanks for this info!

I remember after 15 years and 3 sort of "failed" career attempts, finally conceeding that CH was going to put me out of work. When I finally went to Centrelink to reluctantly apply for Disability Support Pension, I had to fill in a stack of forms the size of a phone book. Back then, proving that CH was a disability in its own right, was like running a Federal court case, I still have about 3 reams of paperwork that it took me to get CH recognised by the powers that be. I was supposed to single-handedly demonstrate a CH attack that could be quantified by Centrelink's criteria, what a monolithic task that was! Medicine had not yet achieved this, how was I to do so?

It all hinged on one important question - "Is your diagnosis confirmed?"
In reply, my specialist had to write "There are no confirmatory tests for cluster headache".
At that stage nobody had ever "seen" a cluster attack. (other than the obvious external symptoms). It would have been far easier for all involved if I had an axe hanging out of my forehead, that could be confirmed! I hope to "see" a cluster attack in action very soon, I know Pr. Peter Goadsby has, he has reported various "brain activities" when viewing CH with newer medical imaging techniques.

With the 4th dimension of time now included in MRI scans (FMRI - Functional MRI, basically means video recording) it will only be a matter of time before we the patients finally get to see what parts of our own brains are doing mid-CH attack.
I suspect somehow that all of our heads will look different mid attack, time will tell I suppose.

I remember having a Head CT scan for the umpteenth time (I just about glow in the dark now and have my own Nuclear half-life!), I was mid-CH, it was about an 8-9 and I was IN the imaging machine trying to keep still. I always thought to myself "What a lost opportunity" as my CH attack had occured whilst in the CT machine, but they had no capacity to record or see it.
I did indeed have a brain and it was considered anatomically normal (subject to debate.. smile )
I would love to have been able to have an attack on Centrelink's front counter to hammer my point home and "confirm" my diagnosis, but alas, it did not happen. I can't wait to show them pictures of my CH from an FMRI, or PET or whatever the next wonderscan will be!

There will be a lot less doubt and a lot more treatment once CH becomes visually tangible to those who do not have it! One thing is for sure in medicine and science, the tangible is much easier to research and to treat than the theoretical!

Just my thoughts.

Cheers, Ben.

Posted in Occipital Nerve Stimulation on 31 Jan, 2012 - 10:27 pm

Hi to all,

Found a newish paper on Occipital Nerve stimulation in CH patients.
Finally, we can see the effects of ONS with a PET scan!

Apologies to Matt, I would have added this to your existing info, but I went back through all your posts trying to find them. I found them, but as the headings/titles have dropped off or been removed???
I cannot access the thread itself, so I had to start another one just to get this info out there.
That's a real shame, beacuse good info is being buried under heaps of new info as it comes in, I hope we work out a way to fix the problem.

Cheers, Ben.

Posted in A Cure for Cluster headaches!!! on 31 Jan, 2012 - 10:12 pm

For those about to trip:
Safety guidelines for the use of Hallucinogens, like mushrooms.

Cheers, Ben.

Posted in Book anyone? on 31 Jan, 2012 - 10:03 pm

Hi to all,

Found another one called "Evidence based chronic pain management", this book showed up under a simple google search as a pdf document. See chapter 22 (and other references) for sections on CH:

Cheers, Ben.

Posted in Prevention on 31 Jan, 2012 - 7:35 am

Les, we have heard you out on many occasions - You can let me know when you have a FORMAL CLINICAL DIAGNOSIS OF CLUSTER HEADACHE from a FORMALLY TRAINED MEDICAL SPECIALIST - report in hand.
Until then for my sake and sanity - PM does not mean "Pester Me".
Leave me alone Les.


Apologies to Bluey, it is a sad state of affairs when a new CHer lobs here and alternative/complimentary therapies are looked to before the 6 or 7 main proven frontline CH treatment drug groups. I feel it detracts from and over-complicates what is already a difficult, complex condition to treat at the best of times. I will direct you back to links earlier in this thread where lists of drugs with proven efficacy in CH are catalogued:

There is a lot of good information in the Tabs on the left too.

Cheers, Ben.
Sorry you witnessed this thread, there are other ones - much better reading indeed.

Posted in An interesting Documentary on 30 Jan, 2012 - 9:20 pm

Hi to all,
I just saw an excellent documentary, or rather caught the last 20 minutes of it on SBS 2. It is called "Science under attack" and is lifted from the BBC.
I noticed some excellent points of debate in there for those who sift the masses of medical and/or scientific literature out there. Also, an interesting critique of the peer-review process used in assessing the merit of scientific data and its collection.

It has no specific reference to headaches or CH at all, yet seems entirely relevant to people like me who sift literally thousands of pages of scientific research to try and find the interesting or relevant pieces on CH and bring them back to the site. This documentary offered some interseting insight into just what sorts of research could be considered more credible than others.

This link to the documentary is valid for another 14 days only, as of 30/1/2012:

If this link fails you, you can go to and search for any program by name. I have had some trouble with the SBS site with this link, you may have to refresh the page to get it to load...

Cheers, Ben.

Posted in Prevention on 30 Jan, 2012 - 11:54 am

Bluey, Oh Jesus, don't go there...
AHHHHHHHHHHHHHH, not Castor oil again...

No record of use in CH, let alone PROVEN EFFICACY.
No statistical or anecdotal evidence that it works for CH.
No consensus amongst Doctors or patients on how it could be used for CH.
No recommendations from CH specialists.
No working theories on how it is thought to work on CH.
No results shown in FORMALLY CLINICALLY DIAGNOSED cluster headache patients.
Basically, after much, much research by most of the moderators and a few dedicated site users, we cannot find any clinical trial outcome or other scientific evidence that supports the use of Castor oil in CH. Castor Oil is not a recognised treatment protocol in Headache conditions.

Staistically, it cannot yet be demostrated that Castor Oil would be any more or less effective than placebo in treating CH. I doubt any Pharmaceutical research organisation would run a trial without a theory upon which to base a trial.

Whilst I realise others will persist with complimentary and alternative medicines out of desperation, I will stick to the well known CH drugs and their outcomes.
Whilst I loathe to dismiss anyone who has reported relief from CH by whatever means possible, I sincerely hope this is the last word on Castor Oil on this site. smile

Cheers, Ben.

Posted in Prevention on 28 Jan, 2012 - 2:46 pm

If you are familiar with Imigran and it has been prescribed and is well tolerated, I would suggest changing the mode of delivery, rather than the drug itself.
I thought the nasal spray was crap, but FDT tablets and injections work for me.
Proven drug efficacy and tolerance are a huge step in the right direction.
Triptans all come down to how you get them into you and how fast you can achieve peak plasma concentration of the drug.

I took a look at Relpax (Elitriptan):

From the Relpax data sheet:
"Absolute oral bioavailability across males and females is approximately 50%. The mean Tmax occurs approximately 1.5 hours after oral dosing."
"In a combined analysis of similarly designed, controlled clinical trials, a second RELPAX dose of the same strength has been shown to be effective in treating those patients who initially responded but whose headaches recurred within 24 hours."
Mean total plasma clearance (CL) of eletriptan following IV administration is 36 L/h with a resultant plasma half-life of approximately 4 hours. The mean renal clearance (CLR) following oral administration is approximately 3.9 L/h. Non-renal clearance accounts for approximately 90% of the total clearance indicating that eletriptan is eliminated primarily by metabolism."

By the looks of it, Relpax is a Triptan aimed squarely at Migraine (slow acting, long duration), I know we use many Triptans as a cross-over in CH treatment, but I have to say this Relpax looks bad for CHers. I know my specialist has not offered either Relpax or Maxalt to me, this is because he knows my particular CH condition very well and he knows triptans better than anyone I know (The Prof's team invented Zomig - Zolmitriptan). I doubt either of the drugs would be appropriate for me, or he would have offered the option to me by now. I asked him about Maxalt, upon close inspection, it was a no-go area for my very particular and unpredictable CH.

Relpax reaching peak concentration at 1.5 hours is too long a wait to knock a CH on the head. Any abortive drug user will tell you that, even the O2 users!
By the 1.5 hour mark, most of us have had an attack and are ready for a short break of a few hours before the next one hits.
Unfortunately, it is much the same deal with Rizatriptan (Maxalt wafers) - too slow acting for CH.
Speed is of the essence when aborting a CH attack with triptans.
My attacks can drop me on the floor in 15 seconds flat, I don't have ANY time to muck around, so Imigran it is for me.
When I hit an attack with Imigran injection, I am looking to get relief in 5 minutes.
With Imigran FDT, relief in 20-30 minutes.
Relpax also looks like a shocker for producing rebound attacks as it wears off - not a problem for the Migraneurs for which it was intended, but a huge issue for CHers like me. Imigran clears from the body very quickly, this can cause rebound CH attacks.
But then again, Relpax has legs for 4 hours, not sure whether this would help or hinder you there, as your body eliminates the drug from your system.

It looks like you may be leaning towards the Migraneous end of the CH spectrum.
(not to confuse the two conditions, but a lot of CHers also have a Migraine condition)
Another member "Guy" and myself can experience CH attacks of 3+ hours duration per attack. Maybe Imigran in 100mg or 50mg FDT (Fast Dispersion Tablet), or even Imigran injection is the way to go.

I realise fully, that I only have limited experience in the form of a patient when it comes to triptans. The Pharmacologists really know this group far better than I.
Best to leave it to your specialist.

These are all abortives anyway.

I hope you have some luck finding a preventive, hopefully you will not need abortives if the Docs can find the right preventive for you.

Cheers, Ben.

Posted in UK based Film-Maker seeks CHers for Documentary on 28 Jan, 2012 - 1:49 pm

My thoughts exactly, I found this whilst searching for anyone who may have the capacity to make a documentary about CH here in Australia. I was disappointed to see no Australian doco on CH anywhere online. Whilst I have the technical skill (apart from shooting video) to do something about it, I am very wary of making any representations on behalf of all CHers.
There would have to be a consultation process.
Apprehension is the only thing stopping me at the moment, technically.
I also have serious doubts about my version of CH being appropriate for all CHers.
I suppose this could be an aspect of a documentary - how different we all are from one another. Then again, I see many docos I don't necessarily agree with, so I know you can't please all the people all of the time.
I know a supporter, who is also a published writer and knows my condition well.
Maybe an objective view from a writer would be better than me ranting about my head...

Hmmm, I need to go away and have a look at my technical capacity to do anything, phone a few friends who can help and see what happens. I had already roughly storyboarded (in concept) what I would do in my head years ago, but never thought I could do anything about it.
Maybe I can.

Sara, that is inspired!
I am off to do some thinking about a Documentary, with the amount of tech crew I know from my old days in live music production and arts, I am sure someone can help.
Excellent. It is a serious undertaking for sure, one that would need attention to detail and a lot of work, but why not?

It ain't like I am goin' anywhere...
Thinking cap on.

Cheers, Ben.

Posted in A Cure for Cluster headaches!!! on 28 Jan, 2012 - 1:27 pm

Hi to all,

An article lifted from the ABC's Catalyst website.
An interesting read, but I have put asterisks **** next to the piece of info pertaining to CH.

Cheers, Ben.


Magic mushrooms point to new depression drugs
Tuesday, 24 January 2012 - Kate Kelland - Reuters

Closeup of hallucinogenic mushroom; Psilocybe cubensis lat.

The researchers caution that the new research was very preliminary and more research is needed (Source: gilaxia/iStockphoto)

The brains of people tripping on magic mushrooms have given the best picture yet of how psychedelic drugs work and scientists say the findings suggest such drugs could be used to treat depression.

Two separate studies into the effects of psilocybin, the active ingredient in magic mushrooms, showed that contrary to scientists' expectations, it does not increase but rather suppresses activity in areas of the brain that are also dampened with other anti-depressant treatments.

"Psychedelics are thought of as 'mind-expanding' drugs so it has commonly been assumed that they work by increasing brain activity," says David Nutt of Imperial College London. "But, surprisingly, we found that psilocybin actually caused activity to decrease in areas that have the densest connections with other areas."

These so-called 'hub' regions of the brain are known to play a role in constraining our experience of the world and keeping it orderly, he says.

"We now know that deactivating these regions leads to a state in which the world is experienced as strange."

In the first study, published in the journal Proceedings of the National Academy of Sciences, 30 volunteers had psilocybin infused into their blood while they were inside magnetic resonance imaging (MRI) scanners, which measure changes in brain activity.

It found activity decreased in hub regions and many volunteers described a feeling of the cogs being loosened and their sense of self being altered.

The second study, due to be published in the British Journal of Psychiatry on Thursday, involved 10 volunteers and found that psilocybin enhanced their recollections of personal memories.

Robin Carhart Harris from Imperial's department of medicine, who worked on both studies, says the results suggest psilocybin could be useful as an adjunct to psychotherapy.

Nutt cautions that the new research was very preliminary and involved only small numbers of people.

"We're not saying go out there and eat magic mushrooms," he says. "But ... this drug has such a fundamental impact on the brain that it's got to be meaningful - it's got to be telling us something about how the brain works. So we should be studying it and optimising it if there's a therapeutic benefit."
Fundamental impact

The key areas of the brain identified - one called the medial prefrontal cortex (mPFC) and another called the posterior cingulate cortex (PCC) - are the subject of debate among neuroscientists, but the PCC is thought by many to have a role in consciousness and self-identity.

The mPFC is known to be hyperactive in depression, and the researchers pointed out that other key treatments for depression including medicines like Prozac, as well as cognitive behavioural therapy (CBT) and deep brain stimulation, also appear to suppress mPFC activity.

Psilocybin's dampening action on this area may make it a useful and potentially long-acting antidepressant, says Carhart-Harris.

****The studies also showed that psilocybin reduced blood flow in the hypothalamus - a part of the brain where people who suffer from a condition known as cluster headaches often have increased blood flow. This could explain why some cluster headache sufferers have said their symptoms improved after taking the psychedelic drug, say the researchers.****

The studies, which are among only a handful conducted into psychedelic substances since the 1960s and 1970s, revive a promising field of study into mind-altering drugs which some experts say can offer powerful and sustained mood improvement and relief from anxiety.

Other experts echoed Nutt's caution: "These findings are very interesting from the research viewpoint, but a great deal more work would be needed before most psychiatrists would think that psilocybin was a safe, effective and acceptable adjunct to psychotherapy," says Nick Craddock, a psychiatry professor from Cardiff University.

Kevin Healy, chair of the Royal College of Psychiatrists' faculty of medical psychotherapy says it is interesting research "but we are clearly nowhere near seeing psilocybin used regularly and widely in psychotherapy practice"

Posted in UK based Film-Maker seeks CHers for Documentary on 28 Jan, 2012 - 12:49 pm

Hi to all,
Just thought I would pass on this find.

Cheers, Ben.

Posted in US based petition - Urge Congressional hearings on the impact of migraine and headache disorders. on 28 Jan, 2012 - 10:55 am

Hi to all,
I came across this petition from the US. FINALLY CH gets a mention, front and centre. I was shocked to learn that only one drug (Sumatriptan) has been FDA approved for use in Migraine in the last 50 years.
(I don't see any approved for CH treatment!)
If only they could see how many different medications we actually use in Pain Unit.
I am not to clued up on the mechanisms of the US congress, but I am pretty sure the people on the hill are the ones who hand out the Government money for medical research grants and FDA funding. I note that once a new drug has cleared FDA regulatory approvals, it seems to appear readily in other countries, like Australia.
Maybe the NPS and PBS look to the FDA for drug approval guidelines? Pure speculation on my part. I do know that my CH specialist Pr Rolan is listening, researching, advising and has been a guest speaker to the FDA.
So we may have their ear, to some extent.

Anyway, this is a US based petition and it may not help here in Australia, but surely the knock on effect from the US has to be of some benefit to us.
I signed the petition, just had to use a US based zip code - pick one, I did. Surely it is worth digging up a zip code, you can post a comment with your virtual "signature". There are some cracker comments in there from CHers too!
I see no harm in adding to the numbers of a US based petition, I hope the trickle down effect works eventually!

I hope to counter my negativity about Australian media by providing alternative platforms upon which to raise awareness of CH.
I am trying as hard as I can folks smile

Cheers, Ben.

The link:

The Petition:

Urge Congressional hearings on the impact of migraine and headache disorders

Sign the Petition : 7,552 Signers So Far

We, the undersigned citizens of the United States, hereby petition the Honorable Senators Tom Harkin, Michael Enzi, Bernard Sanders, and Rand Paul; and the Honorable Representatives Fred Upton, Henry Waxman, Joe Pitts, and Frank Pallone, Jr. –

1) To recognize the following findings of fact regarding migraine and other headache disorders:

- Chronic headache disorders, including migraine and cluster headache, are among the top 20 causes of disability in the US according to the World Health Organization (WHO)
- 19% of Americans will experience an attack of some form of migraine this year.
- 75% of Americans with episodic migraine are women, predominantly of child-bearing age.
- 4% of Americans experience 4 hours of headaches per day, at least 15 days per month.
- Among veterans of the Iraq/Afghanistan conflicts, 37% of servicemen and 57% of servicewomen reported ongoing migraine if there was a deployment history of concussive injury and any predeployment history of migraine.
- Migraine results in an increased risk of cardiovascular disease which has been linked to more than 1500 additional deaths in the US annually.
- Headache disorders, including migraine, are responsible for more than $31B in economic costs in the US annually.
- The WHO estimates that migraine causes more lost years of healthy life in the US annually than multiple sclerosis, epilepsy, ovarian cancer, and tuberculosis combined,...whereas in 2010 the combined NIH research funding on these four disorders ($684M) was more than 45 times greater than that for migraine ($15M).
- NIH funding for all research on headache disorders comprised less than 0.05% of the NIH budget in 2010.
- Only one innovative drug (sumatriptan), discovered, developed, and priority reviewed specifically for migraine treatment, has been FDA approved in the past 50 years.
- A total of only 290 American physicians have received Headache Medicine specialty training and are certified by the United Council for Neurologic Subspecialties.
- The US Congress has never held a public hearing devoted to headache disorders.

2) To hold public hearings in Washington, DC, before the Primary Health and Aging Subcommittee of the Senate HELP Committee and/or before the Health Subcommittee of the House Energy & Commerce Committee, prior to the close of the 112th Congress to:

- further the appreciation among the public and within the federal government of the enormous social, economic, and personal burdens imposed by headache disorders.

- explore the roles of the federal government through the Department of Health and Human Services, the Department of Veterans Affairs, and the Department of the Defense, as well as the role of private sector commerce, in promoting research into the causes of, and treatments for, headache disorders.

- understand and suggest remedies for the significant barriers that exist for Americans with headache disorders to obtaining effective treatments as well as adequate access to health care providers with specialty training and expertise in the care for headache disorders.

Posted in Nines ACA on 28 Jan, 2012 - 10:05 am

Hi to all,
I agree BlueDevil, I see the remnants of Journalism occasionally shine through on "The Project". I think the departure from tabloid presentation like ACA or TT is a good thing. I have seen many medical stories get a fair run on "The Project", with some succinct questions being asked. It is mainstream, prime time too - and it rates, people will see it. They are not afraid to tackle "Un-sexy" issues like Cluster Headache.
Good idea!

Being laid out by CH, unfortunately gives me enough time to watch the same media story across 5 different networks, so I see selective editing all the time.
Watch a Parliament door-stop interview with a politician on the ABC (Lateline, 4 corners, 7.30 report), the politician being interviewed will be given the time to complete their sentence and articulate their point, in context and in its entirety.
Watch 7 or 9 grab a "sound bite" out of the same interview and within 1 hour, the tone of the story has completey reversed, as the politician has now been selectively edited.
The current affairs programs can't even accurately report on the Prime Minister losing a shoe. This outrages people and polarises audiences, this is good for the networks - it achieves ratings. I would go so far as to call ACA and TT "light entertainment" these days, you surely can't depend on them for factual information without spin.
I have been known to watch them occasionally for comedic value alone.

When a story is shot for current affairs programs an OB (Outside broadcast) van/wagon is sent out to the job/event, equipped with a camera man and a sound man.
They will usually get the Journalist to say their little spiel to camera with said event unfolding in the background. This is where the narrative starts - as soon as a Journalist attempts to put pen to paper on the subject matter, they are now in custody of "the facts" until such time as they are edited, produced and broadcast. This is where I think it will fall over, we need to write our own headlines, not a current affairs program.
The camera and soundman's job is to get as much footage and/or sound of any event or job they have been assigned. When all this raw footage is taken back to the station (or the back of the van) for editing, someone has to make the call on how the story is put across.
They need to think of an angle that will rate.
They need to make it into "newsworthy content".
A narrative will be written and the video and sound bites are digitally spliced, diced and julienned to create a narrative for the story. This is where the serious departure from the facts can begin. The story "Producer" comes in, they have the call on any final cut.
It will be a cold day in hell before any current affairs program looks to Roger or anyone outside of their inner sanctum for approval on a final cut.
We won't be offered input on a narrative, that is part of the internal editing and production processes, nor will we get a say in how we are quoted, presented or what our message really is.

One example: I have been to events like "Save live music" protests and seen events unfold myself. We had a very clear message and 8000 people assembled to deliver it to Parliament. (Something the CH community could never replicate). The Journalists and cameras were there too and witnessed the very same events as I. However, between midday when the protest wound up and 6pm, when the TV news came on, the picture was very different. WE had a clear message about property development infringing on live music venues. By the time the spin doctors had been all over it at CH7,9 and 10, it was about the Lord Mayor and his ability to "listen to the people" or "heed their concerns" - never mind the 20 years of lobbying that fell on deaf ears before that.... OUR message got lost and it was spun by the media for political gain.
The Lord Mayor came out smelling like roses and the development aplications kept rolling. We had 8000 people on the steps of Parliament with signs and I still feel like OUR true message was lost. The winners on the day were the mighty poker machine and some politicians who ringed in a few more votes for showing "Leadership" by having listened to the public, allegedly... Now that is spin, on what was a clear cut, black and white issue.

I wouldn't credit the media with the ability to articulate what CH is, especially when CHers are left to educate even GPs and specialists on what is a very complex condition to describe and treat. We need a medical based documentary on CH (other than the existing Youtube ones) that we can show to people ourselves. I am still searching for one, I may just have to learn how to film and do it myself...

At the moment, the Aussie media do have a narrative running on Headaches.
There is a lot of talk about Migraines, lost productivity, sickies and the productivity gains we can make if everybody stopped using Migraine as an excuse for sickies.
(This is the media's message not mine)
We must be concious that our message about CH may be swept up in this and used to support an entirely different argument about Migraines and sickies.
Most of the stuff I see at the moment is the cynical eye of the media saying "Come on, Migraines again? We are onto you. No more sickies for alleged Migraines" etc etc.
I understand that there are genuine Migraneurs out there who must be pretty pissed off with the scrutiny, I would be by now, I feel for them, I am one of them. I know when I finally got back to my job after a major CH bout, just how much I used to detest the comments from co-workers - wink, wink, nudge, nudge "Didn't see you yesterday Ben, another "Headache" I suppose?" a jibe at me about it actually being a hangover with their eyebrows raised. Hard to take when you haven't had a beer in 10 years, courtesy CH.

How we will get heard at all through the white noise is a mystery to me.
Maybe I am short sighted, but even if a story runs, I fail too see how it will benefit us.
4 minutes on TV isn't going to advance medicine.
4 minutes is long enough to do some serious damage to our cause, if our message is not properly conveyed. I would hate to see all the good work done here hijacked by tabloid media to suit their own ratings agenda.

Personally, I think Roger has achieved far more than the media can for CH in one lifetime by creating this site. People may not share my view on media, but were it not for Roger creating this site, we would not be sharing views at all.

Let the debate continue!

Cheers, Ben.

Posted in Nines ACA on 27 Jan, 2012 - 5:04 pm


This is my opinion. It is not an attack on you or the idea of using a form of media to raise CH awareness, sincerely.

Peter, I don't think you have seen how much our media has degraded in your absence, but I agree, another platform might be an option.

(Year against headache? anyone actually read the intro letter?)

I am going to be even more blunt than usual here.

In my view, if you want a story mutilated, misinterpreted, taken out of context and edited to within an inch of its life to suit someone else's agenda - go to Channel Nine, especially ACA. (Sue me, you know the rules CH9).

Guaranteed - they will make a bunch of "Migraine sufferers" look like they should get off the pension and get back to work - look at how well they can ride bikes!!!!!
They could even spin this into a "People with Migraines get more sickies" story, again...

I am sorry Matt, my Father worked for ABC radio. I grew up in a "media aware" ABC household where I saw REAL journalism in person, back when it was still practiced.
Not this crap they serve up at 6.30 every night on commercial stations in 2012.
I grew up watching people like Andrew Ollie, Negus and many others, back when there was a shred of integrity left in journalism. Hell, I used to set up audio and editing gear for them when my old man would smuggle me into the ABC building on night shift.
I have watched editorial decisions being made from the cutting room floor.

In my opinion, ACA stories have ZERO credibility, Today Tonight is the same.

Have you not ever witnessed an event, only to go home and see a report on TV that bears no resemblance to what you just saw?
Example: Sit in the public gallery of a Magistrates court for a morning, if a "news-worthy" story surfaces, watch the discrepancies and spin appear on TV in mere hours...
They can't report a burst water main without creating some "enraged residents that have had enough" etc etc... They seem to me, to specialise in commercial agreements and departure from fact, excusively.

As someone who has been heavily involved with media, production, edits audio and video regularly, I feel this could only go astray. I did see Today Tonight's attempt at covering CH a few years back. Made us look like a bunch of whingers and the presiding "Journalist" neglected to mention the "C" word (Cluster) at any point, despite having described the condition entirely. They finished the story by commenting on what a pain those pesky Migraines are... Thus blurring the important distinction between the two conditions.
Like everyone has had a CH attack - real productive for the cause that one...

I do not trust the media as far as I could throw them.
I am yet to attempt this, but will see how far the guy flies when I catch hold of the last alleged "Journalist" I dealt with. I did not write all these posts for them to become ACA fodder. I wrote them to help CHers and myself.

Lets use another platform.
I have put forward my ideas before many times on other threads.
Maybe ACA can run a story, but they have NO permission from me to use my posts.
Count me out.

If you manage to get a CH story on ACA, after they have finished mutiliating it, I will write to ABC's MediaWatch (where nobody will ever see it!) where we will probably get a more accurate account of what CH entails, even though it is not a "Current affairs" program.

See how it goes Matt, but be prepared to be let down in a major way.
My views are antiquated, but when it comes to media, I trust them to stuff it up. I do hope you prove me wrong.

Cheers, Ben.

Posted in Prevention on 26 Jan, 2012 - 7:48 am

Hi Craig,
As Peter often says (a Moderator here) - Sorry you had to find us Craig.
If no-one else is going to jump in, I will offer up some ideas from my experience.

Here is a link to a couple of lists of medications used in Cluster Headache treatment.

There are many preventive medications used in Cluster headache, but it can all get a bit murky and become quite intimidating for a newly diagnosed CHer. It is a very complex area and can take a while to dial in on which drug is right for you (if any).
There are some separations made in CH treatment between Preventive and Abortive medications. Also between episodic and chronic CH.
There is also some treatment overlap where the same drugs are used to treat two very different headache conditions - Cluster Headache and Migraine.
You may be prescribed anything for "off label" use in CH treatment, including: heart drugs/calcium channel blockers, anti-convulsant drugs (Epilepsy drug group), beta blockers, blood pressure regulators. anti-depressants (Not for depression outright), Oxygen therapy or many more drug options.
It can take a lot of time and patience before you find the right drug, but be persistent.
Personally, after 30+ years of CH and 60 odd drug trials, I need a break, but the next drug is always just around the corner. But my case is an intractable one, most are not, so there are lots of options open and plenty of hope for you to find the right medication.
This can all create a lot of confusion, any questions, let me know.

(See the International Headache Society Tab on the left, you can try the diagnostic criteria on for size and see what type of headache condition you may have)

Firstly, it will be of utmost imortance that you run ANY of these ideas past your GP and/or specialists for correct diagnoses, prescription and close medical supervision.
Every drug comes with risks, a risk/benefit analysis should be carried out by your presiding GP or specialist, just to make sure any drug is a suitable, safe and is a reasonably well tolerated drug for you.

Once you have a preventive in place, if you are still experiencing attacks, seek out an abortive drug from your GP for "per attack" basis. Imigran is a good place to start, it is common, resonably well understood, has proven safety, is well tolerated and easily accessible through GPs, specialists. Pharmacies are getting better at stocking and dispensing Imigran with less trouble these days, as we slowly educate them...
Despite what you may read elsewhere on the site, Imigran injection can be made available to CH patients at subsidised rates through major public hospitals.
Imigran FDT 50mg tablets are available through your GP at a PBS subsidised rate.
It may take a little persuasion on your part to get hold of Imigran, but a Dr should not knowingly withhold a drug of known tolerance and efficacy from a patient who is in chronic, severe pain.
At least mention the drug name "Imigran" to your GP, a lot are not aware of it, a lot think it is only for use exclusively in Migraine, which is complete bullshit.
I wouldn't go into a GP demanding specific drugs, but often a GP is at a complete loss for ideas when it comes to treating CH, so running a list past them is a good idea - they can always exercise their professional right to say "NO".

Seek GP referral to a specialist - CH is a specialist area, ultimately GPs are not adequately trained to deal with CH.


If you are in real trouble, Prednisolone will get you out of a tight spot.
This should only be used as a short term adjunct to seeking out a long term preventive drug that works for you. Intermediate treatment only! (Watch out for long term use of 1 month or more, this drug has a bad side effect profile. A personal word of experience here, avoid Prednisolone unless absolutely necessary, Drs are now handing it out like candy and it has caused me (and many other CHers) some very serious and permanent ongoing health issues. Don't let slack Doctors send you home with a truckload of prednisolone without follow up appointments, you will need to be monitored for safety.)

Good luck with it Craig.

Cheers, Ben.

I will include some drug ideas with safety and data sheets from the PBS website for you:
- Verapamil:

From "Robbins Headache clinic" 1999 (old info):
Verapamil: Verapamil (Isoptin, Calan, Verlan, Covera) is a calcium channel blocker that is effective in cluster headache and migraine. The lack of major side effects is a distinct advantage. There is very little of the weight gain or lethargy often experienced with other medications. Verapamil may be used with cortisone or Lithium, or simply as a single preventive. Although verapamil may take weeks to become effective, it often takes effect in days. The long acting form is very convenient, with the tablets being scored. The "regular" verapamil pills, not the long acting, may be more effective than the long acting preparation.

Verapamil is usually started early in the cluster cycle, and if the headaches are severe, cortisone may be used in conjunction with the verapamil. Doses are initiated at one half of a 180 or 240 mg. SR tablet once per day, quickly increasing to a full tablet. Occasionally, we progress to 480 mg per day, checking for hypotension. The average dose is 240 to 360 mg. per day.

Verapamil is generally very well tolerated. Constipation is common, with allergic reactions (rashes), dizziness, insomnia, and anxiety occurring at times. Verapamil may exacerbate or cause chronic daily headache. Fatigue is less common than with the beta blockers, but is seen in some patients. Peripheral edema may occur."

Lithium Carbonate:

"Lithium: Although lithium carbonate is probably more effective for chronic cluster headache, it is helpful for many episodic cluster patients. Low doses, usually one to three of the 300 mg. pills, are usually utilized with cluster patients. With low doses, lithium is generally well tolerated. Lithium may be combined with verapamil and/or cortisone. After verapamil and cortisone, lithium is often the next choice for cluster prevention."

Posted in A Cure for Cluster headaches!!! on 25 Jan, 2012 - 12:33 pm

Hi to all,

Indomethacin again...
As I understand it, when I trialled this drug in CH, we used it to rule CH in or out.
The text book version:
Headache conditions that respond to Indocid are not generally cluster headaches.
Cluster Headaces do not usually respond to Indocid.

When my CH failed to respond entirely to Indocid, we were able to rule out other Primary Headache or medical conditions. If Indocid had worked on my CH, my diagnosis may have been questionable, by I.H.S. criteria anyway.
But our bodies cannot read the text books.
I still say - relief is where you find it...

An "Indocid responsive" Headache condition:

Note criteria E and F.

The I.H.S. search results for "Indomethacin":

I realise Dan. that this is not helpful to you, nor will this info alone reduce attacks.
Very much aware of that indeed.
Reporting modified CH pain is important, if you can show a specialist how you modified your pain (for worse or better) they may just come up with some treatment ideas.
If Mushys have provided relief, tell your specialist. Maybe they will get out the synthetic Ergot-alkaloids like Ergotamine or DHE. From my experience, noting and reporting any significant modification in CH pain can be the key to finding some relief.

After checking your posts, I am unsure just what meds you have tried or what you are currently taking. A two pronged attack is best = preventives and abortives together. Try to put a floor under yourself with a preventive like Deseril, Pizotifen, Verapamil, Lithium, anti-convulsants or Oxygen, if medically appropriate for you.
Then perhaps seek abortive medications like Sumatriptan (imigran) or DHE (DiHydroErgotamine) for use on a "per attack" basis.

As always, keep your options open and run everything by your GP and specialist. Even the mushys. I know my specialists is also a scientist and a decent bloke. The least I can do for him as a professional scientist is to make him aware of all the variables and options - legal or not, they should know. Who knows? Maybe the specialists have something left to learn about Mushys, ergot-alkaloids and CH treatment?

Check with the Docs mate.

Oh and er, maybe check vitamin levels, I have had a lot of incidental medical problems that I attributed to CH now show up as deficiencies in other areas (my mood swings = vitamin D deficiency for me, I think...)

Good luck with it.
I hope you find something soon.
PM me if you want links to any drug names or info sheets, I can point you in the right direction most of the time... smile

Cheers, Ben.

Posted in Passed my use by date. on 20 Jan, 2012 - 10:42 am

Yeah, You are right Peter. I should follow my own advice more often...
I have been too quick to hand it out, but neglected to heed my own words.
Objectivity in the form of a second opinion appears to be priceless, thus far.

I suppose this is what can happen with GPs and specialists when I get stuck in a groove.
I didn't want to see any more specialists, I had a gutful of most of them here, a lot of them are specialist w**kers in my opinion - great with a golf club, not much else....
After much listening and closely following medical advice, there is a point where it becomes counterproductive spending 2 years "tuning in" someone far more qualified than I, on a condition they are not likely to ever have to treat. Their eyes just glaze over and they get "the hump". This usually condemns my efforts with specialists to irrelevancy and frustration.

After a lifetime during which I have seen probably 30-40 GPs and perhaps 20 specialists of varying medical disciplines, I had landed in the right place - Pain management unit.
However, all this specialist work is done on the assumption that your GP is holding up their end of the bargain. Despite 12 years with my GP, I still think that my CH is doubted, then treated with Imigran and a sprinkle of professional disbelief, just my opinion.

I made a few assumptions, something I hate to do, but caught myself doing it...
- that my GP fully understood my condition and had it "under control"
- that a specialist like Pr Rolan has an exclusive monopoly on CH expertise (he does in this town anyway)
- that my general health was being closely monitored, which it was not.

Gee healthcare can be compartmentalised so tightly, until your GP thinks your specialist is "on it" and your specialist thinks your GP is "on it" too, leaving a gaping chasm between the two, not overlaps and communication - as there would be in an ideal world.

(I note, Pr Rolan did pull me up a few years back after many trials and say something like this to me: "You know more about your CH than I now, having never had a cluster attack in my life. I have told you everything we (the medical profession) know about CH, you now know more about CH than we do, because you experience them every day." - or words to that effect. He went on to imply that the medical profession had more to gain from patient accounts of CH, than I (personally) had left to gain from the medical profession itself. (if that makes sense) We are the ones with the headaches and therefore, we have the answers somewhere in our heads (in whatever form you wish to choose). He was the person who encouraged me to write on the subject, something which I am sure he now regrets...)

Anyway, got some serious G.I. issues to attend to, then I can get Batch's recipe happening and begin incremental changes.

Did I ever mention, this has been the easiest 12 months in my CH in over 15 years?
Least amount of attacks, lower intensity, less drugs - surely this has got to be good!

I would not have been well enough to have been involved on the site whatsoever in a "normal year". I wouldn't be able to face a TV or PC screen usually.
I would have taken a glance and resumed the foetal position I have been in for 15 years.

The only thing I did differently, was to move house away from an incessant smoker where I was passively smoking so much - I thought it was time I stopped being exposed to that.
Maybe that helped? We will never know... pure speculation on my part.

Still around, but waiting to report any major advances - that's my status.

Thanks to everyone for your kind words and thoughts, I would be worse off, less educated and more ALONE, were it not for the people on this site and their compassion.

Cheers, Ben.

Posted in Book anyone? on 19 Jan, 2012 - 9:03 am

An interesting find, I think I may have posted this before, but can't remember... Apologies if you already have them.
The files are small and are relatively current info.
Good for anyone who wants to better understand Headache conditions. Not sure if the links will appear correctly on screen, but they can always be cut and pasted into the navigation window of your web browser (if they are not blue text links). Sorry about this, I have PC issues!!!

Book Description

Based on the current classification of the International Headache Society, this revised and updated 7th Edition provides up-to-date, practical guidance on the very latest advances in research into the pathophysiology, clinical aspects, and treatment of all types of headache-including migraine, tension-type headache, cluster headache, and chronic daily headache. It provides an optimal blend of clinical know-how and relevant basic science, written in an easy-to-read, engaging style.

- Features a chapter organization based on the HIS classification of headache, making information easy to find.
- Delivers balanced coverage of the most recent scientific discoveries as well as tried and true clinical observations.

- Includes updated discussions on the pathophysiology and treatment of migraine, plus a new chapter on Trigeminal Autonomic Cephalgias (cluster headaches).
- Delivers a completely revised chapter on tension-type headache that reflects recent changes in clinical practice.
- Provides revisions based on updated guidelines presented at the International Headache Society, Congress of Headache, September 2003.

Download link:

A couple of others too:

Posted in Passed my use by date. on 19 Jan, 2012 - 7:34 am

Hi to all,
I am having trouble concentrating, putting sentences together etc.
Don't worry Matt, bad choice of words from me there - I have no intention of harming myself or ending anything.
The CH ain't even bad at the moment, just mild shadowing that I can handle. No Imigran reqd.

I got a test result back yesterday that shows I have a "moderate" vitamin D deficiency.
Normal range 50-160 nmol/L, with >80 being within the ideal desirable range.
Mine was 19 nmol/L - sourced info from Pathology results.

This may be the culprit behind my suppressed immune system and explain my bouts of depression, mood swings and shingles too. It looks like the Pred 6 months back took more from me than I first realised. Bone density has dropped too. A cursory glance over the literature on vitamin D deficiency has shown me that is linked to a plethora of other medical problems, most of which I am experiencing.
I have been prescribed 10,000IU of VitD3 per day for a few months.

Funny that, Batch's recipe says to take 10,000IU per day too.
This recipe from Barry, even though not yet sourced or implemented by me, seems intuitively, the way to go for me. Starting point for me is to introduce 1 new component at a time, so as to affect gradual lifestyle shifts, not shock my body with "Crash" anything.
10,000 units of Vitamin D3 per day is in the recipe, so my new GP and I have introduced that, to be followed with more pathology. 1 variable at a time for me, in the true spirit of a science experiment. It's still Pharmacology, just not "off the shelf" CH targeted medication, what a relief!!! I do not recommend 60+ drug trials to anyone...

I took the first 5000IU yesterday, what a boost!
I could feel my body buzzing and my head clearing a bit.
Who knows where this will lead?

I have also had a pinched nerve issue in C1 in my neck.
Went to sleep one night in 1999, woke up in agony and it has never been the same since. I steer cleer of Chiropractors, so there was no way to fix it.
I twisted my head around a few days ago and got a huge crack from between C1 and the base of the skull. It seemingly corrected this issue of well over 10 years.
It was a monumental shift. I had tingling down the whole right side of my body into the sole of my foot, I knew I had shifted something major. My head is back on straight. It felt like my head had been leaning to one side for so long, I also felt a pop in my head, similar to when Imigran injection starts to work - the blood and heat was draining away from the right side of my head, so it seemed to me.
I have had CH far longer than any neck issues, so I don't expect CH relief from the neck crack, but I live in hope. I will take even a humble 5% improvement any way I can get it.

So, once again, thanks to everyone for floating ideas about neck causes and vitamin and mineral deficiencies. These are all areas up for exploration now.

Oh, Neurosurgery rang me to say they were ready to go on the implant - on day 3 or 4 of a shingles viral infection for which I was prescribed the anti-viral Aciclovir, a very effective and well tolerated drug indeed. I could not undergo surgery in that conditiion, the implant has been deferred until May. Initially, I was devastated. But this might be a blessing in disguise, as the Neruo nurses sounded to me like it was all a bit hasty, I was going to go in on 5 minutes notice where another patient had cancelled. It all seemed a bit rushed to me, not something you want to hear or feel going into Neurosurgery, I reckon. Kinda went like this: "Hi, good morning. The saw is still warm and we have a cancellation and can fit you in, how would you like your head cut open today???" Hmmmm, I think not...

I need to have a good talk with an Anaesthesist about heart drugs and Arrhythmias before they roll me in for surgery with GA. So the "post-haste" tone I was getting did not fill me with confidence... I really want to get Batch's recipe happening, although I have tried many things, this one looks promising. If it works, I can tell Neuros where to stick their implant - in someone else worse off than me!

After 12 years with the same GP, it took a new GP ( a new set of eyes) to look beyond CH alone and question the rest of my health. It turns out to be pretty bad, not something I had been advised of in 12 years under my previous GP.

Sometimes I think a long GP-patient relationship can breed a type of complacency in both Dr and patient. It is very refreshing to have a second set of eyes on my case.
When 97% of my GP time is used up on CH management, other parts of the body's health can be easily overlooked, as they have been for 12 years, in my case.
Second opinions offer objectivity, which in my case is invaluable.
This new GP may just save my neck by underpinning CH with good medical treatment that isn't limited to my head and CH condition.

My old GP is still my main one, as it will take me probably 2 years of transitional arrangements before I can "tune in" my new GP on my CH condition.
But, much to my surprise, this new GP has dealt with CH and has a working knowledge of Imigran. This is a big advantage, because boy am I sick of explaining basics like Vasodilation/constriction to GPs who "get the hump" as Peter so eloquently put it.
For 7 years I cried and pleaded on bended knee with my old GP for relief - I never once received Imigran or a mention of it until I was under specialist care in Pain Unit.
I am pretty pissed off that my old GP knowingly withheld drugs of known efficacy, when I reported such intense symptoms for so long. After 12 years with this GP, my diagnosed condition still says Migraine/Cluster Headache. That lack of distinction makes me want to punch a hole in something. It took Pr Rolan to come in back in 2005 and use I.H.S criteria to formally get me a correct clinical CH diagnosis and subsequent treatment, then finally gaining access to Imigran.

Doors are opening, scans are being done and my overall health is being quantified.
So, I will go into the next bout, yet more educated on what I can do, with more options.
Always good to have more options!

Cheers, Ben.

Posted in Rebound Headaches on 17 Jan, 2012 - 12:36 pm

Hi to all,
Got an email back from the Prof - "You do not have Medication overuse headache".
I think I have blurred the important distinction between MOH and rebound attacks.
It looks like there is an important clinical separation between the two headache conditions.
My mistake.

Still, I hope we see some trials in CH, if it turns out to be relevant.
I was barking up the wrong tree again... Sorry Sara and anyone else who took this information to heart. I made a mistake.

I am going back under a rock for a while, until I am certain that I can report any significant Pharmacological advances for CH. I will not be participating on a daily basis anymore, but I will check in from time to time and keep CHers in the loop if anything new appears on the horizon.

Thanks to all for putting up with me.

Cheers, Ben.

Posted in Rebound Headaches on 16 Jan, 2012 - 9:42 pm

Thanks Sara,
I neglected to check the dates, you are probably correct. Oh well, I probably won't get to participate. Turns out I would have not met selection criteria during that timeframe, I would probably have been excluded on one or more of the exclusion grounds, due to other illnesses. I was pretty sure Pr Rolan would have mentioned the trial if I was a suitable candidate anyway. Rather embarrasingly, I had just become over-enthusiastic and emailed him asking to participate, thus interrupting his important work with my trivialities...
That will teach me to read it before I post it...
I think what threw me, is that I keep a pretty close eye on what is going on here and I had not seen those search results show up in a Google search recently - I search on AV411, CGRP receptor antagonists and any other proposed medications almost weekly, just out of curiosity. To me, it seems as if the document was only posted in the last week or so. But with searches, it can be hit and miss, maybe I missed it before, I don't know.
The good news, is that if the completion date was December 2011, we are probably one step closer to being able to either take it to clinical trial phase in CH conditions, or it will be at the very least, one step closer to the Pharmacy shelf.

I have no idea what promises it holds for CH. I know only what I have read about it online. As yet, it has not got a serious mention in CH literature that I am aware of, but if it turns out to be relevant to CH treatment, I am sure it will show up somewhere as a product of treatment overlap between headache conditions. If it ever appears on-shelf, I am sure that CHers could gain access through the correct mechanisms with the help of their medical specialists.

I hope this drug can offer some relief, no matter how long it takes.

We live in hope.

Sorry for the mistake. smile
Sorry for the comments about being flamed, just a few islolated cases here and there have got the better of me. It was mostly in response to PM activity I received from passers through, not the regulars here. I lack diplomacy at times and didn't mean to offend.

Some hopeful sings, but I think it will be a while before we see it...
I did find the datasheet:

The drug "ships on 31-1-12", that sounds encouraging!

Perhaps, try going here and try the drug name "Ibudilast" for more info:

Price and Availability
SKU-Pack Size Availability Price (AUD) Quantity

I0157-10MG Ships on 31.01.12 - FROM 305.55

I0157-50MG Ships on 31.01.12 - FROM 1,197.00

This link may not work, sorry having trouble getting a link direct to the product:

Cheers, Ben.

Posted in Rebound Headaches on 16 Jan, 2012 - 4:30 pm

Apologies, something went wrong with the 2nd link.

Posted in Rebound Headaches on 16 Jan, 2012 - 4:08 pm

Rebound Headaches - also known sometimes as Medication overuse Headaches (MOH)

A dose of optimism from the Prof...

Hi to all,
Firstly, thank you Roger. Les was part of the reason I feel I was wasting my time on the site. That said - At last I have something new to contribute - Pr Rolan is onto something as I have outlined before. It looks like they are seeking participants for clinical trials of a new drug called "Ibudilast". I know the trial does not mention the word "Cluster" anywhere, but I know Pr Rolan, he will more than likely have intentions to experiment with the drug in cluster headache. Even if he doesn't - I do.
Unsure whether this was AV411, now named. But it looks like the modelling in headache conditions has started, right here in Adelaide Uni. I want in. I told you he was onto something...

After a year of disbelief, I can't resist this - I have taken heat for my ideas for a long time now, so a big Hello to all the detractors out there who doubted what we can achieve here in little old Adelaide. Anyone remember Howard Florey? smile
Who said it couldn't be done????

IT IS HERE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!{826e8841-bf3c-4274-90d9-e9a673f3cb99}

I am off to see if I meet selection criteria, I will report any successes.
Bring on the next generation of CH drugs!!!!

Cheers, Ben.

Posted in Passed my use by date. on 12 Jan, 2012 - 11:01 pm

Hi to all,
In the short 12 months I have been a member here, I feel that I have now contributed as much discussion, research and experience as I possibly can. Until western medicine itself gains a better understanding of CH and its causes - I have little left to contribute to the debate.
I got a few people relief from their CH by suggesting they try the humble soluble Aspirin. A few others from my home state have been given names of local specialists and now have access to one of the world's leading CH experts. Some now have CH treatment plans in place, where they otherwise would not have. An excellent outcome indeed.
I wish them all well with their respective journeys.

Thanks to all those who sent me PMs telling me that my posts, ideas or links actually helped them. I appreciate this greatly. It is nice to know that I have helped a few people, if nothing else. Working so much on this site can be an arduous and thankless task at times, but it is rewarding for me when a person reports relief from CH. That's why I came here.

I have tried to provide starting points for CH patients that are self-researchers on this site so they can sift the masses of medical literature and better educate themselves on their own Headache conditions. (the old - "Give a man a fish and you feed him for a day. Teach a man to fish and you feed him for a lifetime." - Chinese Proverb) Also, putting a safety net under my claims by providing safety sheets and plenty of links for users to check out their own medications and treatments. Safety is vital, I have always encouraged users to research their own condition(s) and know their medications well - it may save your life one day.
I have researched until my arms are falling off, I have contributed all I can without repeating myself until I am blue in the face. I stand by my record and my posts.

We achieved a lot in my time here.
I provided links to Roger for some of the new tabs on the left.
Between us, we got up the links for:

- 2011-2012 Global year against Headache (An excellent platform for raising CH awareness)

- The International Headache Society (IHS) tab for diagnostic criteria on Headache conditions. The measure by which all headache conditions are quantified by specialists.

- The Pharmaceutical Benefits Scheme (PBS) tab so Australians can get immediate access to medication datasheets, availability and costs on all their medications.

- The National Prescribing Service (NPS) tab for yet more localised and current info on medicines.

- We also got all the phone numbers up on the home page for SANE, LIFELINE, Poisons information centre, and Health Direct Australia (for 24hr medical advice from health professionals)

Not too bad considering the year of pestilence I have had...

Thanks to Roger for acting so swiftly in getting the links up there in record time for users. Hats off to Roger, an excellent programmer, administrator and a nice guy to deal with too. Roger, this site is one of the smoothest, easiest to use and is a must see for any Australian CHer.

I can't greet the newbies, I lack the necessary psychology skills, diplomacy and tact.
I can't fill Heather's shoes in her absence, nor would I try.
Peter, I think you are doing an excellent job, even from the other side of the world, your articlulate approach and concern for others with CH is palpable and commendable.
Barry's technical approach has given me something in return - Batch's recipe. If this works as I suspect it might, I may well dodge an implant operation. Thanks Barry.

For the record - I knocked back a Moderator's position some time ago, as I could never do the position justice. I never wanted my sometimes inflammatory views to be confused with those of the site itself. To accept a Moderator's position would have been a conflict of interest for me, as I would have had to put a gag over my opinionated mouth.
I wanted to be free to engage in sometimes polarising, but robust debate, unencumbered by the responsibilities that should be exercised with a Moderator's position on this site.

To all the other people I have befriended, helped, offended, frustrated or alienated - I apologise unreservedly if I have put noses out of joint. I am a straight shooter. I call it how I see it, always will.

Cheers, Ben.

Posted in Medical research funding - where the money is... on 11 Jan, 2012 - 4:45 pm

Hi to all,
I note recently many discussions about research into CH and where the money would/could come from. Here is a starting point for readers to have a look for themselves at what we spend and where we spend it here in Australia. Our entire Federal Medical Research budget from the NHMRC appears to be around AU$700 million anually.

(A recent BBC Documentary titled "What's in that pill?"
) mentions that the cost to a Pharmaceutical company (like GSK) to take a drug (like Imigran) from concept stage, through the clinical trials and regulatory hurdles, before it arrives "on-shelf" safe for us to use, is around US$1,000,000,000.)

Whilst I understand that increased public awareness of CH is vital, I do not see how this relates directly to the funding of medical research. One could assume that increased awareness leads to increased funding, but this does not appear to be the case, upon closer inspection of the figures.

I think that "research funding" and "raising public awareness" are two very different issues and should be tackled as such.

I am no finance expert, and I may have it very wrong, indeed. smile
I have not done much research on this as yet.
Just exactly where CH research funding fits into the picture is unclear to me at this stage. Check out the last link for the latest expenditure data.


From Wiki and NHMRC:

In Australia, in 2000/01 (the most recent data available), about $1.7B was spent on biomedical research, with just under half ($800M, 47%) sourced from the Commonwealth government (all sources). About $540M came from business investments/funding and a further $220M from private or not-for-profit organisations (totalling 44%). The balance was from state and local governments. Since then there has been a significant (?) in government funding through the National Health and Medical Research Council (NHMRC), whose expenditure on research was nearly $AUD700 million in 2008-09.

The National Health and Medical Research Council (NHMRC) is Australia's peak funding body for medical research, with a budget of roughly 700 million dollars a year [1]. The Council was established to develop and maintain health standards and is responsible for implementing the National Health and Medical Research Council Act 1992[citation needed].

This body is a material agency and is incorporated under the Financial Management and Accountability Act 1997. It was a part of the Department of Health and Ageing portfolio until mid-2007. It is now a self-governing statutory authority.


Users are advised to read these data with some caution because, while the data will reflect ministerial approval of funding across the years of the grants at the time that the announcement was made, NHMRC research grant funding changes over time for a variety of reasons including, but not limited to: the annual indexation of expenditure; decisions to accept or not accept the offer of award; availability of reserves for some People Support grants, where an offer of award is declined; delay in the start of a grant; transfer of researchers between institutions; and a delay in obtaining the necessary approval to conduct the research.

Posted in on 10 Jan, 2012 - 11:43 am

When it comes to clinical trial outcomes, I can pick and choose from amongst all the findings and find one to support ANY argument or theory, either for or against a topic. You will always find conflicting data. Take your pick.

This is why I posted on Journal Impact Factors.
You can at least limit the scope of your research to the Medical Journal articles that have been cited by other medical professionals - a peer review process of sorts that weeds out the more dubious trials getting around.

The more times an article is cited by other medical professionals, the more credibility it gains over time. This is real important as many clinical trials are stacked for a specific outcome, not always in favour of optimum patient outcomes either.
Remember the trials are largely funded and conducted by companies with a commercial interest in selling drugs or gaining certain regulatory approvals. So trial outcomes can be skewed somewhat.

When you do a google search on a clinical trial outcome, just under the heading (link in blue text) it may say "Cited by 55 - related articles". I tend to limit my search criteria to the last 12 months, so data is fresh, then check to see how credible the research is, as cited by peers in the medical profession. By doing this you get the benefits of many eyes over that data and hundreds of years of combined medical experience having scrutinised the document in question.

This should help to narrow down the absolute masses of literature we have to sift through.

Cheers, Ben.

Posted in Untitled on 10 Jan, 2012 - 11:21 am

Kim, your candid insight is much appreciated by me.
Thanks so much for sharing your thoughts, I empathise with you wholeheartedly.
I don't want to start a euthanasia debate on the site. But I reached the conclusion some time ago, that when the time is right for me, many years from now. I would like to make a concious and informed decision to take my own life, in the right setting.
Not out of pain, duress or Psychological instability, but as a very personal and very well thought out decision. I am 36, without a solution, by the time I am 70, I will have had chronic, intractable CH for 70 years - quality of life for me personally, has to be assessed and weighed up at some point, I feel. Until then, I will persist with CH and finding solutions. I don't give up easy. I have no intention of self harm.

Nothing arrogant about gaining a better understanding of your condition than your Doctors have. That will not take 3 years Kim, you probablty already know more than them. A Doctor asked me this morning "So what is a Cluster Headache?"
- "A" cluster headache - one, singular, non-plural. Thus demonstrating their lack of understanding of CH or training in this area.

Whatever you do, don't limit the scope of your studies and research exclusively to the field of Neurology. CH doesn't. I have been researching CH for well over 10 years and running it by Neuros and specialists in many other medical disciplines.
Cardiologists, Physiologists, Psychologists, Psychiatrists, Neuroscientists, Neurosurgeons, Physiotherapists and many other branches of medicine all have valuable contributions to make to CH research. Neurologists do not have a monopoly on the understanding of CH.

It may well take you 3 valuable years to reach the same conclusion as them - they don't know. I have had more luck and hope from looking at Pharmacology in CH than Neurology. At this stage we are still managing and living with the symptoms of CH, rather than the possible causes, as you know all to well. Even if the Neuros do work out what causes CH, they will be looking to the nearest Pharmacology labs to take their solution from the drawing board, to an administerable drug. I am certain that if CH relief ever arrives, it will arrive in the form of a Pharmacological solution eventually.

Keeping in mind that when I say Pharmacology, I mean it in the true text book sense of the term: (the study of the interactions that occur between a living organism and chemicals that affect normal or abnormal biochemical function. This would include all the things that nature provides. I don't care if relief comes from a tablet, Injection, mushrooms or from eating a rock dug out of the ground, it is all Pharmacology.)

From wiki:
Pharmacology (from Greek φάρμακον, pharmakon, "poison in classic Greek; drug in modern Greek"; and -λογία, "Study of" -logia) is the branch of medicine and biology concerned with the study of drug action. More specifically, it is the study of the interactions that occur between a living organism and chemicals that affect normal or abnormal biochemical function. If substances have medicinal properties, they are considered pharmaceuticals. The field encompasses drug composition and properties, interactions, toxicology, therapy, and medical applications and antipathogenic capabilities.

Sorry about the Pharmacology lecture everyone... off topic again.

My thoughts are with you Kim.
I am glad you have your mind back for a while, use it while you can!
I hope you stay green (and alive!) for as long as possible mate.

Cheers, Ben.

Posted in Untitled on 09 Jan, 2012 - 11:19 pm

Hi to all,
I want to discuss with others, their feelings on where they are going with their CH in the long term. As CHers, we get a diagnosis, some treatment options and are then largely left to our own devices. Doctors and Specialists alike don't seem to discuss what happens after this. We go home, medications in hand with instructions in the other and "Suffer". What do we do now???

I could bury my head in the sand, but it would still hurt...

Could anyone please share their experiences or discussions with their specialists about their own long term CH Prognosis?

A definition of Prognosis:
Prognosis - Noun: The likely course of a disease or ailment. A forecast of the likely course of a disease or ailment. Synonyms: forecast - prediction - prognostication - prophecy

Most of us know that the number one risk to a CHer before or after diagnosis is suicide.
I don't want to discuss suicide exclusively here, nor do I wish to ignore the possibility of such a tragedy, I just want to know more about the prognosis for most CHers.

I know myself, as a CHer WITH AURA, I have read about the possibility of strokes and other complications and that's only if the medications don't get me first. As an acomplished guitarist, stroke has to be one of my greatest fears, without music I would not be here.

I already had a CH attack so severe about 5 years ago, that I awoke with a Neuro diagnosed "benign tremor" down my left side of body. It was intense - epilepsy type intense.
I could not play guitar very well, or hold a glass of water one-handed for around 18 months due to the tremor, I had to re-learn guitar after 20 odd years practice. I did it, but it was a hard slog. Purely by coincidence, my 10 months on Topamax reduced my tremor dramatically. I have long since ceased the drug and the tremor is much better, go figure...

Maybe it was a mini stroke or something, it had the Neuros buggered if they knew what it was. I was tested for Wilson's disease - all clear. CT and MRI were all clear too. The shaking never fully went away and I am still a bit weak down my left side. I have a lag in nerve signals going up and down my left arm, which I can detect in my sense of rhythm when I play guitar these days. I only get the left side shakes these days as a CH attack is coming on - then it gets violent with unilateral convulsions (not drama queen stuff either...Barry knows what I am talking about here!).
I usually shake a lot, spasm until my limbs hit walls, cupboards etc, inject Imigran and pass out. Then do it all again 4-6 hours later. Anyone within 6 feet of me has to stay out of range of a stray limb.

What's your prognosis?

Cheers, Ben.



The pain of cluster headaches can be intolerable. In fact, a higher-than-average rate of suicide has been reported in men with these headaches. Eventually, as people age, the attacks cease, but doctors cannot predict when or how they will end.

Effects on Mental and Emotional Functioning - Anxiety and depression are common among people with cluster headaches, which can affect functioning and quality of life.

Auras and Medical Risks - About 14% of patients with cluster headaches have migraine-like aura. Recent research suggests that headaches that are accompanied by aura may increase the risk of stroke or transient ischemic attack (TIA). TIA symptoms are similar to those of stroke, but last only briefly. A TIA is often a warning sign that a person is at risk for having a more severe stroke. Headaches with auras may also increase the risk for eye retinal damage (retinopathy). Aura-related headaches may affect the small blood vessels in the brain and the eyes, thereby increasing the risks for stroke and retinopathy.

Posted in on 09 Jan, 2012 - 10:23 pm

Right on the money mate - they don't know.
Nobody yet definitively knows what causes CH, or how the drugs are thought to work on it.
We can show statistically and anecdotally over and over again, that the scientific THEORY behind the pharmocokenetics ( ) of a drug like Imigran, (how it is thought to work and how it progresses through the body.) It does work for CH patients - an experiment repeated millions of times with great success reported by patients. We report relief. Blood can be seen shifting from behind the eye on PET scans after Imigran injection. We see elevated blood pressure and vasoconstriction. We know it works, just not how it works.

PET and MRA findings in CH:
* note the careful use of words like - "probably" and "likely" in this abstract.
To me, the absence of any definitive statements coming out of these studies proves that we have much left to learn about CH and the brain.

Ask my specialist (Not a Neurologist, but a Pharmacologist and CH drug expert) how Imigran actually works on the mechanisms of CH and you are likely to be told that these mechanisms are not yet fully understood, despite the mountain of statistical evidence that drugs like Imigran do work.

Having had CH since birth, I have heard every possible scenario from worsening attacks as I get older to reported cases of spontaneous remission. Hell, it took me from age 0 to 23 before I even heard the word "Cluster" uttered by a medical professional. That's a lot of undiagnosed "suffering", if you want to call it that... So any outcome seems possible, at this point anyway.

The reality is, nobody knows, so nobody can definitively say for sure what will happen to our respective CH conditions as we age.

All I know is that no 2 years in my life are alike with CH, my CH constantly morphs and changes behaviour. It rarely repeats itself in the same manner, thus making it very difficult to treat. Just this last few weeks, my mainstay Imigran is becoming less effective, despite my absolute minimal usage of the drug. I live in hope that my CH will morph off into the sunset one day...

Glad yours has Kim, sincerely.

Cheers, Ben.

Posted in Does pregnancy stop cluster headaches how many of us have a type of Fibromyalgia on 07 Jan, 2012 - 3:54 pm

Hi to all,
I have a friend who had a GP diagnosis of Fibromyalgia. Much pain and many symptoms for her indeed, right across the board. It turns out that the condition is difficult to accurately diagnose and many other conditions may mimic the symptoms of Fibromyalgia, or vise-versa. There are a clear set of diagnostic guidelines to establish whether or not a patient has Fibromyalgia, it still appears to be a grey area with some Doctors.

I am unsure what relevance this has to CH, but I am sure many of us report many of the symptoms associated with Fibromyalgia, despite not having it.
I included this info for those who may want to investigate it further.
Who knows Les, maybe this is what you have been looking for!

Cheers, Ben.

Some info on Fibromyalgia:

A link to The American College of Rheumatology Criteria for the Classification of Fibromyalgia:

ACR Fibromyalgia Diagnostic Criteria

Fibromyalgia is a distinctive syndrome which (*unlike Cluster Headache* - edit by Ben) can be diagnosed with clinical precision. It may occur in the absence (primary fibromyalgia) or presence of other conditions such as rheumatoid arthritis or systemic lupus erythematosus (concomitant fibromyalgia). It is rarely secondary to another disease, in the sense that alleviation of the associated disease also cures the fibromyalgia. It may be confidently diagnosed in patients with widespread musculo-skeletal pain and multiple tender points.

History of widespread pain has been present for at least three months
Definition: Pain is considered widespread when all of the following are present:

- Pain in both sides of the body
- Pain above and below the waist In addition, axial skeletal pain (cervical spine, anterior chest, thoracic spine or low back pain) must be present. Low back pain is considered lower segment pain.

Pain in 11 of 18 tender point sites on digital palpation
Definition: Pain, on digital palpation, must be present in at least 11 of the following 18 tender point sites:

Occiput (2) - at the suboccipital muscle insertions.
Low cervical (2) - at the anterior aspects of the intertransverse spaces at C5-C7.
Trapezius (2) - at the midpoint of the upper border.
Supraspinatus (2) - at origins, above the scapula spine near the medial border.
Second rib (2) - upper lateral to the second costochondral junction.
Lateral epicondyle (2) - 2 cm distal to the epicondyles.
Gluteal (2) - in upper outer quadrants of buttocks in anterior fold of muscle.
Greater trochanter (2) - posterior to the trochanteric prominence.
Knee (2) - at the medial fat pad proximal to the joint line.

Digital palpation should be performed with an approximate force of 4 kg. A tender point has to be painful at palpation, not just "tender."
Illustration of Tender Points

Fibromyalgia Syndrome Symptoms
Condition % of FMS Symptoms
Muscular Pain 100
Fatigue 96
Insomnia 86
Joint Pains 72
Headaches 60
Restless Legs 56
Numbness and Tingling 52
Impaired Memory 46
Leg Cramps 42
Impaired Concentration 41
Nervousness 32
Depression (Major Depression) 20

Arthritis and Rheumatism. Vol. 33, No. 2 (February 1990)

Posted in Beware Mushroom hunters - Death caps put three in hospital on 06 Jan, 2012 - 11:13 pm

Sorry to keep posting on this, just following up the completion of the story for the benefit of readers. This is my last post on this tragedy - point taken. I won't be putting any mushrooms down my neck that I cannot visually and clearly identify.

Cheers, Ben.

Update from the Sydney Morning Herald:
Deadly mushroom meal was made in a restaurant kitchen
Bianca Hall
January 6, 2012

THE New Year's Eve meal that contained death cap mushrooms and killed two people was prepared in a restaurant kitchen, Canberra health authorities said last night.
Chef Liu Jun, 38, who made the meal at the Chinese bistro in the Harmonie German Club, and a Chinese woman, Tsou Hsiang, 52, died from liver failure in a Sydney hospital while waiting for transplants. Mystery surrounds another man, 51, who remains in Sydney's Royal Prince Alfred Hospital in a stable condition with death cap poisoning.

ACT Health initially said this man was part of the same group, but ACT police said this was not the case. Health authorities inspected the restaurant and said there was no risk of exposure to the public. Friends of the chef, who had spent several years working in Australia, said he was obsessed with fresh food. He was also working to send money home to his wife and two children, a seven-year-old boy and a girl, 11.

A sign at the Chinese bistro where the meal was prepared read: ''The Chinese Bistro will be closed until further notice due to illness'', it was reported last night. Inside, the remains of a meal sat on a table next to a counter. A statement from the club last night offered condolences ''to the family and friends of our colleagues who died recently after an unfortunate event of eating death cap mushrooms at a private meal.''
''That particular meal was prepared for a private meal and was not part of the public menu,'' it added. The Herald does not suggest the meal was available to the public.

Mr Liu's friends believe he picked the poisonous mushrooms in Braddon on his way home from work, mistaking them for the edible straw mushrooms used in Asian cooking.

The four friends at the dinner were not members of the same family. A man in his 30s ate a small amount and left hospital on Tuesday. Mr Liu's close friend Tom O'Dea said the man had eaten only a tiny portion of the deadly meal because he had been nervous about eating wild mushrooms. Another person at the dinner had not eaten any mushrooms, and was unaffected.

''Liu Jun, being a chef, he's super into fresh food, and that's part of the problem here,'' Mr O'Dea said. ''You really just don't expect that you make one mistake while eating something like that and be dead, and dead within 48 hours in the most horrible way.''

Death caps are among the world's most deadly mushrooms.
Mr O'Dea said Mr Liu's wife is trying to organise travel to Canberra, but without a passport or visa is enduring long bureaucratic fights to cremate her husband. Miss Tsou had been in Canberra for several months on a tourist visa. Her adult son is said to be having trouble raising funds for airfares and funeral expenses.

Read more:

Posted in Pulling out for a while on 05 Jan, 2012 - 12:28 pm

Hi Heather,
Sorry to see you go, enjoy yourself!
Re: what Peter said. Excuse my ignorance here - I have ZERO travelling experience, but I hear Imigran FDT 50mg has travelled successfully around the world unchallenged by customs. I know it is in manufacturer's blister packaging and is not a liquid, so apparently it is OK to take on a plane. I suppose it has more to do with your destination than the medication. I just hope you can take your medications with you!

I realise who I am talking to! Someone with more medical and travelling experience than I, by far. So good luck with it all.

I hear the French wind "The Mistral" is a bad one for Migraneurs apparently, but if I were in your shoes, I would be looking optimistically at the change in latitude, it may just stop the cycle Heather, you never know!

Enjoy the break Heather.

Cheers, Ben.

Posted in Beware Mushroom hunters - Death caps put three in hospital on 05 Jan, 2012 - 12:09 pm

Hi to all,
Firstly, something I overlooked last time I posted and I am very sorry to have done so. - My condolences to the families and loved ones of those who lost their lives in this incident. My heart goes out to them, I should have mentioned this first, I apologise unreservedly. It is not my intention to have offended anyone involved in this tragic incident.

Back to Ergot Alkaloids...

Chances are anyone who has tried the drug Ergotamine, Cafergot or DHE, has already trialled the risks/benefits of Ergot alkaloids as an abortive Vasoconstricting drug in acute CH attack treatment. I may be mistaken as I am no chemist or Doctor, but I believe that if Ergotamine was trialled for your CH, mushrooms could perhaps be ruled out as an alternative CH treatment option?
(Matt, good point - I don't think we need to break any laws to try Ergotamine!)

From my own experiences, I would suggest discussing a trial of all the Ergotamine based drugs and their varied modes of delivery with your Doctor before thinking about using mushrooms. After I unsuccessfully trialled Ergotamine, Cafergot and DHE, I went back to the Triptan drug group - specifically Imigran as my primary vasoconstricting abortive drug for CH attacks. All of these drugs were trialled under the close supervision of a Professor of Pharmacology - my specialist. This appears to be the normal course of treatment in a long journey of finding what works for your CH.

Ergotamine and Triptans (Imigran etc), both Vasoconstrictors are contraindicated, so its one or the other, I'm afraid...

Cheers, Ben.

I have attempted to cover all the bases as a starting point for research on Ergotamine use in CH. Anyone considering Mushrooms for CH may be interested in looking further at this drug group. I hope this info is of some benefit to readers.

Some relevant excerpts from wiki:

Ergot or ergot fungi refers to a group of fungi of the genus Claviceps. The most prominent member of this group is Claviceps purpurea. This fungus grows on rye and related plants, and produces alkaloids that can cause ergotism in humans and other mammals who consume grains contaminated with its fruiting structure (called ergot sclerotium). Ergot extract has been used in pharmaceutical preparations, including Ergot alkaloids in products such as Cafergot (containing caffeine and ergotamine or ergoline) to treat migraine headaches.

Ergoline is a chemical compound whose structural skeleton is contained in a diverse range of alkaloids including a few psychedelic drugs (e.g. lysergic acid and LSD). Ergoline derivatives are used clinically for the purpose of vasoconstriction (5-HT1 receptor agonists—ergotamine) and in the treatment of migraines (used with caffeine) and Parkinson's disease. Some ergoline alkaloids found in ergot fungi are implicated in the condition ergotism, which causes convulsive and gangrenous symptoms.

Ergotamine is an ergopeptine and part of the ergot family of alkaloids; it is structurally and biochemically closely related to ergoline. It possesses structural similarity to several neurotransmitters, and has biological activity as a vasoconstrictor.

It is used medicinally for treatment of acute migraine attacks (sometimes in combination with caffeine). Medicinal usage of ergot fungus began in the 16th century to induce childbirth, yet dosage uncertainties discouraged the use. It has been used to prevent post-partum haemorrhage (bleeding after childbirth). It was first isolated from the ergot fungus by Arthur Stoll at Sandoz in 1918 and marketed as Gynergen in 1921.

Dihydroergotamine (DHE) is a semi-synthetic form of ergotamine approved in the US in 1946. Oral bioavailability is poor and it is not available in oral form in the US. DHE is available as Migranal nasal spray and in ampules for subcutaneous, intramuscular and intravenous injection. Efficacy is variable in the nasal spray form with bioavailability 32% of injectable administration. Subcutaneous and intramuscular injections are generally more effective than the nasal spray and can be self-administered by patients . Intravenous injection is considered very effective for severe migraine or status migrainosus. DHE is also used in the treatment of medication overuse headache.

Nausea is a common side effect of IV administration and less common in other modes. Antiemetics can be given prior to DHE to counteract the nausea. Risks and contraindications are similar to the triptans.

DHE and triptans should not be taken within 24 hours of each other due to the potential for coronary artery vasospasm. DHE produces no dependence

Cafergot data sheet:

Posted in Beware Mushroom hunters - Death caps put three in hospital on 04 Jan, 2012 - 12:58 pm


Two people have died after eating death cap mushrooms at a New Year's Eve dinner party in Canberra. The deaths were confirmed by a spokesman for Sydney's Royal Prince Alfred Hospital this morning. The victims were waiting for liver transplants after eating the fungus.

"It (the mushroom's toxin) is particularly toxic to the liver so you will eventually go into a liver failure and that's how these individuals would have succumbed to death," Dr Naren Gunja from the NSW Poisons Information Centre said.

Four people ate the toxic mushrooms, which look very similar to a popular edible Chinese mushroom. One has been released from Canberra hospital and another is still receiving treatment in Sydney. Tasmanian food writer Graeme Phillips says the deaths highlight the need for more detailed public information.

He says he has gathered wild mushrooms in France and Italy, where identification charts can be checked and chemists can identify dangerous varieties.

"Here, the only people that really know what they're doing are the migrants from Europe, eastern Europe and so on - I don't know of any published guides to the toxicology of Australia's fungi," he said.

ABC news video featuring Brett Summerill from the Royal Botanic Gardens with some timely advice:

Hi to all,
This very unfortunate situation occured because the mushrooms in question were not correctly identified before consumption. Something that could easily happen to any amateur, a CHer too. A timely reminder that not all drugs, plants or alternative treatments/remedies come with consumer information data sheets, FDA approvals or appropriate medical supervision.

After 60+ drug trials, I am acutely aware that western medicine can possibly cause "harm by prescription pad" equally as damaging as this scenario. But for the most part, "off-the-shelf" pharmacological compounds are a calculated risk/benefit analysis usually conducted closely with the patient in the correct clinical setting and supervised by a medical professional.

Please readers, think twice before posting on a possible CH treatment that is outside of the boundaries of recognised medicine and close medical supervision. Research your alternative therapies and try to put a safety net in place for readers in the form of data sheets, patient accounts, clinical trial results and hard evidence that they are safe for us to use.

I realise we throw all sorts of ideas around on the site, I encourage and enjoy the debate. It will take unconventional thinking to crack CH in the long run, I think.
But please, perhaps with any alternative medicine suggestions, make some attempt to supply some safety documentation for people who may just try it!

I would hate to hear of a fellow CHer "busting" their way to a liver transplant or even the morgue, simply out of confusion over mushroom identification.
I agree with Brett Summerill from the Royal Botanic Gardens on this one.


Posted in Untitled on 03 Jan, 2012 - 7:47 pm

Hi to all,
I saw a story on "Headaches" on Today Tonight in SA maybe 5-6 years ago. Can't track it down, sorry. They nailed the whole "attack" nature of headaches, I think the term "Cluster" may have even been mumbled once in the story. The cheap visual effects, like a 'vision white-out' and 'drop to the floor' were reasonably accurate, as was the description of fast onset and severity.
They spoke to a young man who had debilitating and unpredictable "attacks".
I remember being dismayed by the end of the story when the presenter comes back with a post editorial comment like "Nasty things those Migraines, had one myself last week...) Thus blurring the important distinction between Migraine and Cluster Headaches.
Very disappointing message indeed.
I was hostile to say the least...

This brings me to another important point.
For those organising bike rides or other CH awareness campaigns - beware the media.
I grew up in household where my Father's work with the ABC featured prominently in my life and know how the media work. (The ABC are great but only reach 2% of the population at best, so CHers will probably have to aim any campaign at commercial mainstream and online media as well).

I am just super wary that they could make CHers look like a "Bunch of Migraine sufferers who can still ride bikes quite well despite their Migraines" or some similar mixed message. Pick your headline before they do!

I formed part of an incorporation once. A not for profit organisation to help raise awareness of Youth issues together with a youth drop in centre. It was a success, until the media manipulated a story on the youth centre and ran a page full of lies, labelling our youth centre a "Drug culture" of sorts. It raised awareness all right - the public opinion turned against us. They raised the joint, burned it to the ground along with all our efforts.
That "Journalist" subsequently went on to become a prominent reporter on television in WA. I believe a supermarket complex and car park now stand where our youth centre once was.
So, I have a cynical view of media. smile

I think CHers need a mission statement or manifesto with a clear but simple message, or the entire point could be missed. Just my thoughts...

It gave me something to think about on New Years when I was staring at a tiny IASP "Global Year Against Headache" poster stuck on the wall in ER. I was there all night New Year's eve, got a CH attack at 4.30am (Happy New Year...). Not one soul paused to look at that poster, I would hate to see any attempt to raise CH awareness go unnoticed for lack of a coherent message. Guaranteed that poster will still be there, largely unnoticed in 2013.

Unfortunately, I cannot participate in any event, other than research input.
Sorry I can't put my money where my mouth is, but some of us just can't ride bikes anymore!!!!

Cheers, Ben.

Posted in Beware Mushroom hunters - Death caps put three in hospital on 02 Jan, 2012 - 9:33 am

Hi to all, just saw this interesting story and thought of my fellow CHers trudging around out there possibly seeking the psilocybin mushroom. Here is what can happen when you take an uneducated guess at identifying any unknown flora. I think it is no coincidence that these people were seeking mushrooms. Given the date, I assume it was a "New Year's" recreational experience gone wrong. I don't have all the facts on this story, but neither does the media at this stage.

It appears however, that Dr Pengilley has some timely advice for any would-be Mushroom hunter... ACT or not, CHer or not.


The Canberra Times

02 Jan, 2012 01:00 AM
Death caps put three in hospital

Three Canberrans were hospitalised after eating death cap mushrooms yesterday, prompting urgent warnings from health authorities about the dangers of poisonous wild mushrooms. Death cap mushrooms are thriving from recent summer rains and warmer temperatures, and ACT Health has reiterated warnings to the public in the wake of the three cases yesterday. One patient presented to the Canberra Hospital and another two presented to Calvary Hospital after eating the mushrooms.
ACT Health couldn't discuss the cases of individual patients, and the severity of their conditions remains unknown. Death cap mushrooms can cause liver failure and death.
There have been three deaths and 12 reported cases of poisoning associated with death cap mushrooms in the ACT over the past decade.

Acting Chief Health Officer Andrew Pengilley urged Canberrans to think twice before eating mushrooms found in the wild.

''The fact that we've had some people admitted having eaten these mushrooms raises the issue and I think we should just let people know that they need to be extraordinarily careful when collecting wild mushrooms,'' he said.

''As the name would suggest they're quite seriously toxic... the key really is that if people do eat them and they get sick, that they seek treatment very quickly.''

Death caps generally grow around oak trees, making them particularly prevalent in the ACT.

Dr Pengilley said the death caps could be hard to identify.
''Even if you get one death cap mushroom in a whole basket of other mushrooms, that can be enough to cause you serious problems. The best way to be safe is really, quite simply, buy your mushrooms from a grocer.''

Death cap mushrooms can be distinguished by their white gills.
Treatment is more likely to be effective if a patient gets to hospital immediately after eating the mushrooms. Medical staff can try to flush the mushrooms out of their system and use a variety of drugs to lessen the damage on the liver.
The consumption of death caps can also require a liver transplant.
Typical symptoms include abdominal pain, vomiting and nausea.

ACT's Health Alert on Death Cap Mushrooms:

Fact sheet:

Posted in Untitled on 31 Dec, 2011 - 2:56 pm

Hi to all,
My thoughts are with you Sara, I hope all goes well for you and your Son.
Keep your head up Heather, a new camera can be inspiring too as I have just found out...
Looks like we all had a great Christmas. I got 3 days CH free out of nowhere (YAY!), but my Prednisolone/Aspirin induced stomach ulcer kept me more than busy, had me in ER most of the night.
At about 3.30 am this morning, I had a wonderful Nurse mix me a cocktail called a "Pink Lady" and slam it on the counter along with a glass of water - "There's ya chaser!" she says.
"That looks foul" I said, "Don't look at it, just drink it!" she replied and promptly departed.
This very putrid pink concoction was one of the most vial things I have ever drank - uuurrrggh...
It was basically local anaesthetics. Nexium and I don't know what else, haven't researched it yet, can't be bothered. (Don't want to know!)
It may seem off topic, I know. But these are the complications caused as a direct result of CH treatments, so some relevance there I think?

So, to all the drinkers out there - HAVE ONE FOR ME!
I haven't had the pleasure of a Beer on a hot day since 2001, no plans to either, but boy do I miss it some days. Beer has gotta be better than the "Pink Lady"...

As always -
Cheers, (My Ironic non-alcohol drinking sign-off)

Posted in An alternative anyone on 30 Dec, 2011 - 10:15 am

Bloody hilarious Barry, thanks, it keeps the spirits up!


Posted in Untitled on 30 Dec, 2011 - 10:10 am

thanks everyone!


Posted in Untitled on 27 Dec, 2011 - 5:35 am

This is like a form letter, I am going to type it once, then cut and paste it where it is needed. Yesterday, boxing day - I was wobbly from too much medication, I took a fall into a doorframe and busted my already stuffed left arm. It was just on the mend too, after weeks of bloody tendonitis. Looks like there will be no computer typing or guitar playing in the near future for me. It will be a while before I can respond to any emails, or messages. Looks like I tore a ligament this time, not happy and gees it hurts.
Everyone must think I am accident prone, I am trying to avoid that idea if possible, but I have had a really bad year for injuries.
I am very sorry to all people to which I cannot reply.
I have some unfinished business going on in a few threads, I will get back to all of them when I can.
I really gone done it this time… I have to go and have it looked at today.
Sorry folks.

Cheers, ben.

Posted in Untitled on 26 Dec, 2011 - 1:11 pm

Thanks Sara,
It is probably coincidental, but I see my own links coming back at me now!
I have seen this one before, so yes, Nitrates will be the go.
I think you nailed it when you said "In cycle". Odd for me to be worried about not having a CH at the right time, as I am usually having CH 9-10 months of the year.
I have never had an established cycle to speak of, its so unpredictable.
It's the unpredictability that gets me. Last time the Docs wanted CH on cue, we waited 2 full days in a ward before I had a very small blip of a headache and at the time, they had been absolutely roaring 9 out of 10 and having 30+ attacks per week, not that I count them.
But we still couldn't catch a fully fledged CH attack whilst in hospital - something I wanted my specialist to see for sure!!!
I just hope that doesn't happen again.

Thanks Sara.

Cheers, Ben.

Posted in An alternative anyone on 26 Dec, 2011 - 12:49 pm

Very interesting Barry. My Pharmacologist is not dismissive of anything I wave under his nose, he will be delighted to cast an eye over this I am sure. He also is a leading researcher and clinical Professor dealing specifically with Headache conditions. He spends a lot of time working on new compounds to regulate bits & pieces of our brains. (His team invented Zolimtriptan - Zomig way back when).

I don't have any Chemistry background either, like you I come from a Technical background, so I have applied all of the logical and lateral thinking skills that a technical background entails directly to CH. It became apparent very quickly that I was out of my depth. That's what specialists are for! I can only speculate as a CHer.

You know how a simple battery is made right?
(Correct me if I am wrong Barry)
An Anode, a Cathode, an insulator and an acid. (The old piece of copper, galvanised tin stuck in a lemon trick).
Each cell should put out 1.5 Volts (We know current/Amperage is a different story).

In Telecom work we come across a phenomenon called "Foreign Battery" where voltage (Most often 1.5V or thereabouts) is detected across a pair of wires that would otherwise have given every indication that they are disconnected (Infinity Ohms or open circuit). Every now and then, nature throws one of these Foreign Batteries at us.
A tree falls on a footpath somewhere, a cable is crushed, copper wire and old tin/galv insulation meet, the gum from trees and other junk gets in there when it rains and Bang! There it is - voltage measured on a pair of wires that are not connected to any form of voltage supply whatsoever, at either end.
So batteries occur naturally sometimes, albeit with a little help from man-made inventions like copper wire...

At one point I was going so crazy, I started to look for physiological anomalies in my head. I suspected that I had created a battery in my head - an Anode in the form of Amalgam fillings (mercury (50%), silver (~22-32% ), tin (~14%), copper (~8%), and other trace metals). A possible Cathode - I also had a stainless steel wire running across the roof of my mouth on my dental plate, from one Amalgam filling to another.

Sometimes after I had eaten, I noticed strange metallic sensations in my mouth.
I can only assume that I had an anode - the fillings, a cathode - the stainless steel wire, an insulator - the tooth/enamel itself, and an acid - saliva, which changes PH all the time, mostly within the acidic range of PH.
This is going to sound real crazy, but I got out my multimeter and measured across from the filling inside of my tooth to the wire on the outside - the reading was between 0.8V and 1.2V it varied from day to day. I swear, I could hardly believe what I was reading.
I checked this on other multimeters - same thing...
I have no idea what signifigance this had to CH, if any at all - but I had read somewhere that getting amalgam fillings removed was the way to go.
I had them removed - no joy for CH there.
I had CH long before I even saw a dentist or had any fillings, so the battery idea was not likely after all. This falls under my category of "Strange stuff I did pre-diagnosis".

But this is what got me thinking about various parts of the brain, neurotransmitters etc.
There are so may things to regulate - take your pick.
Calcium channel blockers like Verapamil (as explained to me by a Neuro) work on stopping a "filament" within a nerve ending from being active, thus preventing a nerve impulse from leaving from the site of the pain. Or so the theory goes, if I have it correct.
Keeping in mind that a nerve impulse is (I think) esentially electron flow.
We know enough about electrons to regulate how they behave, so I hold out some hope for CH here too.

This is why I am excited by AV411 and the interesting new ways Glial cells can help to modulate pain signals back to the nerve receptors. The man running this trial for AV411 is my specialist, so I hope I get to try it in CH conditions!!!

So many ways to regulate what goes on in our scones, that's why I am hopeful we can find a new drug that will help us.

In the meantime, I will get that list in front of him and more importantly, I will attempt to get hold of all the ingredients so I can get Batch's batch happening.
I also have to seek advice on contraindications with medications.
(There is no point in me taking Batch's batch if one of my other meds blocks Magnesium or something...)

All highly speculative, I know, but I am ready to try something else!
Just because I have taken all these drugs and know a thing or 2 about them, doesn't mean I like them. Not one bit.
My Pharmacologist says often "All drugs are poisons".
I will gladly take a mineral tonic over the truckload of junk I take daily.
I will be so happy if this works.
Onya Batch, wherever you are!

Thanks Barry.

No, I haven't gone nuts, the multimeter thing was years ago, before correct diagnosis and treatment took place. Amazing what we will do out of curiosity for our CH's isn't it?

Cheers, Ben.

Posted in Untitled on 26 Dec, 2011 - 11:52 am


Excellent! The magic words "I'll have a chat to the doc next week and see where I go".
I wish I read that line more often!
Fingers crossed it is working for you mate, I wouldn't expect miracle results from drugs right away, but it is very good news for you to see that you are reporting some relief.

If Verapamil fails you in the long run, it is a very positive sign that you have responded to drug treatment, there are many, many alternative options left in the "medicine cabinet" that may help.
Keep your hopes and spirits up Wayne!
Maybe not too much spirits... smile

Good luck.

Cheers, Ben.

Posted in Untitled on 26 Dec, 2011 - 10:37 am

Hi Wayne,
My experience with Verapamil was a short but nasty episode - don't let that put you off Verapamil, about 20% of CH patients using high dose Verapamil for CH prevention will have some issues with it and will have to cease taking it. For most, it is not a problem.
Together with your GP and Neuro, you may end up having to ramp up Verapamil dosages until you find the right dose for you. This is a fine balancing act to achieve.
Finding the effective dosage without reaching a toxicity issue can be difficult, but usually only in the "Industrial Dosages" that Goadsby describes here:
3 minutes 10 into this vid, Goadsby goes through the drill for Verapamil use in CH.
180mg is a dose routinely used in Heart conditions, for which the drug was originally intended.

I remember from my own experiences with Verapamil, Topiramate and Diltiazem that my body still had CH attacks, but with reduced head pain.
Topiramate was the best one for me (apart from the intolerable side effects).
I always still had attacks, just with much reduced head pain, known as shadowing.
I still got all the classic symptoms - sensitivity to light and sound, blood shifting to the right side of my head, gut shutdown, shakes down my left side, BUT, I was able to be in public, not on the floor in pain. I could even carry on a conversation mid attack, even thought I knew my body was right in the middle of a CH attack.

None of these drugs ever seem to prevent the attack itself (or the biological indicators showing that you are having one) the best relief I have ever had, has still seen me "shadowing" frequently, but able to get on with life. These drugs are merely ways to manage CH, help you live with it better. None of them will "Cure" CH outright.
We are still working on those drugs and we are close to finding a few that just might do the trick.

I note that you report changes on your head pain, I concur with Barry.
Morphing CH is a problem whether you use meds or not. Mine are still consistently inconsistent. But seeing a change in the way your CH behaves after taking just 180mg of Verapamil seems to me to be a very positive thing. Escalating the dose until you get relief is probably a good way to go.

Remember, I am no Doctor, check with them before you do anything.
Also, be vigilant about getting ECG heart scans done each time you escalate dosage.
I will hazard a guess here and say that if 180mg has modified the pain, a routine heart dosage of around 240mg may just tip the scales in your favour, check with the Doc and see!!!!!

Also, know your drug - check the PBS A-Z medications listing on the tab on the left.
Under "V" for Verapamil, you will find all the datasheets for th drug, these list known contraindications and interactions with other medications. Always good to have the datasheet with you, in case a Doc doubles up your meds and prescribes Verapamil under any of its other known trade or brand names.

Errmmm, some of the info posted by Leslie earlier in the thread was originally written by me in a post. That info was written in direct response to an individual's concerns, it has now been lifted and quoted out of context, sorry about that, not your problem mate.
I will sort that out.

Good luck with the Verapamil Wayne.

Cheers, Ben.

Posted in Untitled on 26 Dec, 2011 - 9:57 am

Thanks for that, I rather embarrasingly asked my specialist of Nitroglycerin:
"Do I have to drink the stuff like in a Looney Tunes episode", he replied somewhat humourously, that they had tablets to do the job these days. But this brings me back to square one, the last time I took a tablet called Arginen??? or Anginine??? under my tongue, I had no CH attack, this perplexes both my Specialist and I. (I have googled it and cannot confirm which one I took). That was a one off, to treat an actual chest pain related condition in ER (from another backfired drug trial outcome), so that incident alone does not mean that another appropriate Nitrate can be found for the job.

However, this stuff:
Nitrostat, says it can be injected, I am sure this will do the job.
Once again, I think it will be down to mode of delivery and the right dose of the right Nitrate. I would rather go down this track than take a gamble on my implant efficacy data with red wine alone...

I was asking all this out of curiosity, but I am sure my Specialist can find something.
It may well be Nitroglycerin, I see it comes in liquid form as drops to be put on the tongue for Angina/Heart attack treatment.

Thanks for the ideas everyone.
Who knows? I might be having 6 CH a day when the implant goes in.
Paradoxical I know, but I hope for a HUGE CH or 3 just at the right time.
Gotta show this implant works or doesn't work, one way or the other!

It is scary stuff Peter.
But the only thing that scares me more is the thought of another 30 years of CH mate.
Even though the Guinea Pig can't say NO, but I can - what other choice do I really have?
(Rhetorical question, no reply required people!)

Cheers, Ben.

Posted in An alternative anyone on 24 Dec, 2011 - 9:52 am

I have a new GP - a new set of eyes, so this info is good timing.
I am having a HUGE batch of pathology done next week, including vitamin and mineral levels, so I should be able to find out the levels of these goodies already in my system, I suspect it will be bugger all, my diet is bad at the moment. I will print off that list if "Batch" doesn't mind and run it past my new GP.
I suspect they will tell me to give it a go.

I have had enough of the heavy medications mate and have suspected that there were of course, other ways to tackle CH. The day I drank a glass of "Salvital" at onset of a CH and the headache stopped, I twigged that minerals might do the trick.
But it may have just been another Phantom attack or False start, that I get many times a day. My Pharmacologist mumbled something positive about bi-carb and PH possibly helping my CH??? Can't remember exactly what he said.

Thanks for the very useful tip Barry!
Will get onto it.

"Batch's batch", sounds like something from Elizabethan Pharmacy!

Cheers, Ben.

Posted in Untitled on 23 Dec, 2011 - 5:42 pm

Suggestions for CH triggers Les, re: Nitrates.

I will leave the replays up to you mate.


Posted in Untitled on 23 Dec, 2011 - 3:10 pm

As a professional full-time patient I have to present in front of one of the world's leading Headache specialists on a pretty regular basis.
I must do this in an exemplary manner, with credible trial outcomes and concise patient feedback. Specialists make important decisions based on my level of patient feedback.
Like how and when to cut my head open.

I appreciate that statistical and anecdotal evidence have merit in exploring all treatment options for CH. I too, have done many crazy things to relieve CH, like we all have at some stage. There are many anecdotal stories of some of the strangest things providing relief from CH, I know this from experience and talking to many users of this site. I will never dismiss alternative aproaches or "Thinking outside the box" as you do so well. We need alternative lines of enquiry and thought if we are to one day "Crack the CH puzzle". Don't get me wrong, your ideas have validity. It will take a Scientist who thinks very differently to crack CH when it finally does happen.

To my point of relevance - Whilst your contribution is greatly appreciated and I hate to be dismissive of ANY ideas that may lead to CH relief. I am not presenting in front of my PMU team of highly skilled and educated medical specialists to discuss the next stage of a Neurosurgical implant operation, whilst suspended upside down, covered in Castor oil, or with Golf Balls in my ass - fullstop.

Whilst I suspect this would be highly amusing for my PMU team, I am unsure as to how this is going to help them to perform Neurosurgery on my thick head.

It is a nervous time for me Les.
I am not throwing any other variables into the mix, my specialists have enough on their hands with the implant operation. I appreciate the ideas, but I need to be left alone with my Imigran right now.


Posted in Untitled on 23 Dec, 2011 - 1:30 pm

Hi to all,
Just chiming in here as a public patient.
Having had the damn things since birth, I have never been in a position to afford private health insurance anyway - the longest I have held down a job was 15 months, courtesy CH...
I have no private health insurance, never have. If I was honest and disclosed a pre-existing condition such as CH on an application form for Private health insurance, I am likely to have that condition exempted or have my application knocked back outright. Insurance companies know CH and they will probably run a mile from someone like me.
They know I will cost them a fortune.

However, I have still managed to achieve all these drugs trials and have received excellent CH treatment from some of the World's best. The public hospital system can be frustrating at times, I could cheerfully put a bomb under some of the clinics I have been through (Just joking all you NCA spooks...) but once I got into a Pain Management Unit under the supervision of a real CH specialist - things started looking up. Private health cannot buy the kind of services that I have been lucky enough to receive. Despite popular opinion in the media and some patients' collective frustrations with ERs and GPs - I think the public health system is not broken. I have been well looked after. It just takes some patience and persistence.

As a patient of a public teaching hospital that is attached to Adelaide University, I get the direct benefits of the best and brightest minds that this city (and others) has to offer.
I don't have to, but I let students in on my procedures so they can witness and learn more about CH - there is no indignity I have experienced that has gone unwitnessed by a med student somewhere here in Adelaide.

Example: I was doing drug trials years ago under a student Neuro and Registrar, it was not pretty, but he did his best. 6 or 7 years later, I am ambulanced into an unknown ER and there he is! I said to the Nurse "Grab him!" (and bugger off...) because I knew that he was CH aware! Now a fully qualified ER trauma specialist, he remembered my name, all my medication issues, understood the contraindications and was straight across my problem. All becuase he was educated on CH by me (his only CH patient) and his University training.
A new generation of specialists like him are being educated on CH as we speak.
I am sure the next CHer who presents in his ER will be better looked after than previously...

I also note the number of up and coming Doctors, Nursing staff and Specialists who are trained about CH from day 1. Our children and grandchildren will not have to go through the medical ignorance we have all faced if generational change can be affected in the way CH is approached and treated.

If I was in the private health system, I have no doubt that a Surgeon would have "Had a crack" at me, because he needs new tyres on the Volvo. I know they put patient care first, but Private Surgeons are there to make money directly from carrying out procedures. The more they do, the more cash they make - fact. Salaried Medical Officers in the public system who are often the very same people (Surgeons, just working in a different hospital for 1 day per week) get paid the same amount, whether they operate or not...
Private health decisions are often influenced by the almighty buck.

(Note one case history of a private patient who had CH for 2 years, had trialled only 2 drugs for CH, then went straight under the knife for an unsuccessful Bi-lateral Trigeminal Nerve severing procedure. AFTER the surgery, they trialled her on another drug (Topiramate, I think it was) and that was entirely successful, but the surgery and the damage was done first, all in private health) - Availability of funding can equal hasty decisions. I for one am very cautious and would prefer the slowly turning wheels of the public system.

Sometimes the long wait and the lack of funds in the public hospital system means that I get a cautious approach to my treatment, where I otherwise may not have.
Part of the reason I can't push this implant thing as hard as Matt has, is that there is no funding for my implant. I am sure it will cost 30 grand too, but the hospital weighs this up against the cost of my Imigran injections (Must be a few grand a year there) and all the complications I can have later in life from the drugs (Ulcers, Liver and Kidney issues etc etc,)
In the long run, a $30,000 operation is more "cost effective" in managing my CH long term.
Because of my relatively young age (36) I have a high potential for significant quality of life gains, when/if an implant has been proven successful.

I just want all the broke CHers out there (like me) to know that there is hope, even without Private health insurance.

Cheers, Ben.

Posted in Untitled on 23 Dec, 2011 - 12:34 pm

Thanks everyone,
I don't drink at all anymore, in case it sets off a bout.
Too scared for that too... 1 beer can equal 1 CH attack, which then repeats and so on for the usual 9-10 months at a time. One would easily be mistaken in thinking "Well, just drink a beer then." if I am looking for a trigger. It ain't that easy. I may have to drink for several days to trigger a bout and just like Peter, unfortunately I have never reported a CH attack during a vicious hangover.
I am definitely not ruining my 7 day trial by using an implant to treat headaches which may or may not be alcohol induced, this offers inconsistent feedback to the Neuros on the implant's efficacy. This is why I was thinking Nitrates, like some heart drugs for Angina.
I am quite prepared to put myself into a long bout, if it allows implant efficacy to be proven, or ruled ineffective. The Neurosurgeon that is doing the implant operation knows implants very well. Unfortunately, I just don't think he quite gets CH like we do.

Get this - The last (and only) implant recipient for CH, that this Surgeon worked on had the temporary implant for 7 days. The patient was not offered "A more permanent option" in the form of an implant, due to his "Inconsistent" feedback data on how well the device worked for him.
I don't know about you folks, but I know my CH is consistently inconsistent - that is data itself that all Neuros should take on board. They seem to lack the understanding, that I can't just "Switch CH on" for their convenience. Do all Neuros think in Binary code or what??? If I offer inconsistent feedback on the implant, I am far less likely to receive one, hence my search for a trigger.

I know all too well that if I drink a Beer and have a CH attack, hit the "ON" button on the implant - I am treating an attack triggered by Beer, not one of my 4am Hypothalamic thumpers that comes outta nowhere...

This may not be about Nitrates at all, like Barry I can knock back most anything with alcohol in it with out CH, but Beer seems to be the one to do it. Hops, malt, yeast - all that stuff, must have something to do with it. I won't speculate here on Beer and CH, because it will be endless (and I was once a Cellarhand working in WA's wineries). The only 2 drinks I have had in the last 10 years were in a PMU ward, first day I tried cheap Bourbon and cola cans - nothing. Day 2, I took in 2 cans of warm west-end draught beer, that did the trick, but I was already in a bad bout. It only triggered a tiny 2-3/10 CH attack, barely enough to treat. I was so annoyed that my previously scheduled day in a hospital ward had been put off for a week, the previous day that I WAS scheduled to be in the ward, I had 3 MASSIVE thumpers in about 8 hours, all 9/10 - none of them triggered by alcohol. The hospital should have witnessed these! (This was my O2 test!)

There is always the issue - "What kind of headache are we trying to treat?"
An alcohol induced CH attack, is by design, caused by a known external trigger.
Treating (Aborting) this particular alcohol induced attack may require a different treatment approach than a naturally occuring/non-triggered CH - one that starts of its own accord.
Seeing as nobody yet knows the cause of a normal (Un-triggered externally) CH, it will be very difficult to know what type of CH we are treating, as the external trigger is different every time.

I could take 50mg of Pred for a week, then stop cold turkey, that will do it.
But we will be treating a Pred rebound CH attack, not a normal CH.
I know from experience that Pred withdrawal induced CH attacks do not respond to Vasoconstrictors like Imigran for me. Maybe there is no Vasodilation going on when I stop Pred cold turkey. Who knows?
See what I mean?
Different external triggers means different approaches are required to abort the attack, this makes it a "pin the tail on the Donkey" exercise...

I could pull all-nighters, throw my sleep patterns out, dehydrate myself etc - that might do it.
Once again, we would be treating the wrong type of CH, an externally triggered one.

I could load up on Imigran for a few days, then sit back and wait for the rebound cycle to start. But once again, a Sumatriptan rebound CH attack is caused by a known external trigger, very different to whatever it is that my brain does when a real untriggered CH starts.

Over the course of all the drug trials, I have yanked various drugs for various reasons.
E.G: After I turned blue from a Topiramate toxicity, I went cold turkey on that.
From full dose to zero in 12 hours flat.
I was expecting one thumper of a CH, but got nothing.
Even my specialist was surprised by that.

I am out of ideas.

How the hell this Neurosurgeon expects my head to chime in at his convenience within a 7 day timeframe, then offer solid feedback data on implant efficacy, I just don't know. I can't lie or exaggerate feedback, nor would I. That would just skew the results and I may unneccesarily end up going through complications like Matt did. I may not even need the implant, it may not be tolerated, ineffective - anything. It is still an experiment, either way.
The implant will ultimately either work or fail, Matt made that pretty clear with his experiences. Once in, it really only has 2 options - "ON and "OFF", so I suppose I will know pretty quickly whether it works.

Really, I can't think of a way to "Trigger" a CH on cue.
Even if I did, it would be an induced attack, not a naturally occuring one.
I can only hope that for some reason, those particular 7 days line up with my CH.
There is really no other option.

Thanks for your ideas, if anyone has any other suggestions, please chime in.

Hey Matt, did you use any triggers mate?
(Sorry to be inconsiderate here, not that you needed them, from what your posts say...)

Cheers, Ben.

Posted in new medication found on 21 Dec, 2011 - 1:55 pm

Sorry, I forgot to mention that Goadsby says in his youtube lecture, that only around 20% of high dose Verapamil users in CH will run into Heart trouble. I was one of the 20%, it appears you were lucky with Verapamil. If you need Goadsby's exact wording, check out the video a couple of posts back, I can't remember it off the top of my head.


Looks like a move North is the go Trevor! Barry (one of the moderators) has a bit more experience with this "Latitude/attitude" thing with regard to CH. I don't travel much.
I reckon Barry could let you in on a couple of things to do with location, temperature and especially O2 use, which is always an option!

Headache clinics do exist!
We enjoy the services of one distinguished CH expert here in the Royal Adelaide Hospital's pain unit. He ran such a clinic for Headaches in the UK for nearly 20 years I am told.
Even his resume does not reflect his vast experience with CH, I only know this from 5 years as his patient.
He doesn't advertise, I don't know any CH specialists who do, but lurking in a Pain Management unit near you, there just may be some serious knowledge and resources on CH. You never know until you look.

I know there are some CHers in NSW who are getting appropriate treatment, its probably just a matter of getting your case notes under the right nose at the right time.
I am sure there must be someone near to you who can help.

My specialist once wisely pointed out to me "The Guinea Pig can't say "NO".

Cheers, Ben.

Posted in desperately needing help. losing my mind................ on 20 Dec, 2011 - 12:16 pm

Hello Brain Pain Again,

60+ drugs tried here and still some left to do, so there are options left - many of them.
If your Doc can't grab this year's MIMS book and simply prescribe "Imigran" or something similarly appropriate for you to get some relief, I would be looking elsewhere. My GP puts rockets under Hospital systems occasionally, a reiterated referral will get you in to see a specialist sooner. I would seek a second GP opinion if I were in your shoes.
Untreated, undiagnosed and unmedicated chronic, severe pain is a recognised condition in its own right, your Dr should be treating that as URGENT, to say the least.

Verapamil and Prednisolone are both the territory of specialists who have access to the correct treatment protocols for CH and the capacity to run tests and fix you up (in a hospital) if it all goes pear-shaped. I know GPs prescribe these drugs routinely, but monitoring the drug's ongoing use/effects is difficult for most GPs, especialy in CH management. (Most GPs don't have onsite Pathology labs, CT scanners or ECG equipment, in most cases) This is more of a hospital focussed, specialist supervised task, I would think. Perhaps a job for a Pain Management Unit.

Outright cessation of Prednisolone can be dangerous, it is typically tapered to avoid rebound CH attacks and to let your adrenal gland function return to normal. This can be verified using Pathology tests. Watch out for "spots" you think may be Prednisolone related, Pred can cause chickenpox, possibly why you aren't feeling too well. Although unlikely, after so much Pred you may need to be tested for Addison's disease, a peril all long term Pred users potentially face.

Verapamil use in CH should be routinely and very closely monitored with regular ECGs. A "Bad reaction" to Verapamil can kill you or cause serious damage to your heart, it should be checked out by an ER or someone with an ECG machine.

All of these things have happened to me, but I got prompt treatment from some of the world's best. I was supervised by specialists in the correct clinical environment, so I am one of the lucky ones. I survived it all.

I think your Dr should google CH and gain at least a basic understanding for your benefit and that of other patients.

Your'e in a bad spot mate, I wish i could pull some strings, but I am too far away to help. Not having a go at you "The Patient" at all, just that ignorant Doctors really frustrate efforts to treat CH correctly. With so many treatment options available, I think your GP has to be brought up to speed on CH. I feel so frustrated for you, sorry about my tone...

I could put yor GP onto a specialist who can tune him in on CH in under 5 minutes flat... Hence my frustration for you.

Good luck with it, be persistent and patient, you will find relief somewhere.

Cheers, Ben.

Posted in new medication found on 20 Dec, 2011 - 11:13 am

Hi Headbanger,

Not your typical "Iron Maiden" fan I presume... smile
Latest news I heard coming out of Goadsby's team (A few weeks ago) was that Verapamil does not cross the blood-brain barrier as well as first thought. Their solution - already "Industrial quantities" of Verapamil are now going up to doses over 1000mg in CH treatment.

We have to find something else, this drug when used in such high doses - needs to be monitored closely. Routine ECGs were not performed on me whilst I used the drug. I was left with a permanent heart rhythm issue after ramping up Verapamil to only 360mg per day. My heart nearly ground to a halt. This is outside of my limit of medical understanding, but I believe the "P-R" and "Q-A" intervals, as seen on my ECG were abnormal at the time, after unmonitored treatment with Verapamil.
An ECG should be carried out before using Verapamil, as it is required every time you escalate dosages. (Please check with your Dr for routine tests and protocols, I am not a Doctor).

It has been over 5 years since I trialled Verapamil and my heart rhythm has finally been given the all clear by a CVIU, so long as I stay on Atenolol (Noten) to keep it ticking regularly like a clock.

Pr. Goadsby on Verapamil @ 3:10 into the video.

If you are gobbling Verapamil for CH, INSIST that a routine ECG be carried out on a regular basis. Or you could be stuck on another drug FOR LIFE to attenuate heart rhythm, as I am. I am 36 years old.
(Thanks to the distinguished Neurologist who failed to offer any ECGs during my treatment with Verapamil, you know who you are...)
Or worse still, one CH patient using Verapamil for CH had worse heart issues than me, the patient required a Cardiac pacemaker implant after Verapamil had done it's damage.
Don't be alarmed - Be careful.

All of this info is available in the form of clinical trial results, medical journals and is probably contained somewhere in my posts. An alternative that is overlooked often here, is Verapamil's distant cousin - Diltiazem, this may be worth investigating.

Research your drug.
Know it by trade, brand and chemical compound names.
Realise that around 240mg per day is the typical dosage for use in Heart conditions, we are stepping into dangerous territory by jacking it up to 1000mg. Verapamil was never intended for this purpose.
High dose Verapamil for CH is OFF LABEL, EXPERIMENTAL use of the drug and should be monitored as such.

Here are all the data sheets on Verapamil, from the PBS site:

I am no Doctor.
I am sorry I cannot provide all the trial results and links at this time, I am too ill to go on a major researching exercise today!

Good luck with it Headbanger!

Cheers, Ben.

Posted in Ride for Awareness on 19 Dec, 2011 - 11:39 am

Heather, Matt and everyone,
Excellent idea printing off those posters and putting them in a GP's office. I will attempt to do the same, if and where I can. I am unsure if I read it right, but I think this site and any activities like a bike ride can get a mention in the form of a name or web address put onto promotional material for any event. It looks like we can work with the IASP as partners in any such project that raises public awareness of CH. It says the following in the IASP Event Checklist:

" - Send an announcement to the IASP office ( with all of the pertinent details, including the title of the event, the location, the dates and times, topics to be discussed, and contact information for those who may wish to attend. Be sure to share any unique brochures, flyers, posters, handouts, or other support materials you have created for the event."

Whilst I do not know whether the offer of material or financial support is forthcoming from IASP, I don't see any such section to seek assistance as an individual or as a site, I could be wrong, my head is starting up.... I can't see straight enough right now, but somewhere I think the IASP people mentioned that any events would make up part of a media blitz in October? 2012. It must be in here somewhere, apologies for not digging it out myself:

I am in SA and cannot ride a bike anymore, or get myself to NSW where this idea seems to be centred. Like many people, I have had involvement in charities, not for profit incorporations, obtaining community grants, raising awareness of different issues, etc, etc. I know it is not easy to do. I don't envy those who are in the driver's seat on logisitics, I am sorry I can't do more from here.

Imigran time.
Cheers, Ben.

Posted in Ride for Awareness on 19 Dec, 2011 - 9:02 am

Hi to all,
I don't want to harp on, or get in the way here, but this is all I can contirbute - research start points...
Is this platform of any help at all?

The IASP really do want to get behind any events, read the president's open letter, it is all in there. We have a general poster from them:

We have 2 free, open source posters to promote the cause:

We have a checklist for staging a CH related event for 2011/2012 in Australia, be it a bike ride or whatever can be facilitated:

From the I.H.S:
IHC (International Headache Congress) Poster Forum. Posters from the recent 15th IHC are now available in the Poster Library. Click on the link below to access. If you would like your poster to be included, please email a pdf file to Carol Taylor.
Contact By Email

Maybe someone at the I.H.S can help to promote any ideas once they are put on paper:

Just an idea guys...
They really want to help us, I reckon we would be a bunch of mugs to miss out on the rare opportunity of using this platform!

Cheers, Ben.

Posted in Untitled on 19 Dec, 2011 - 8:41 am

Heather & Barry,
I know this is sort of "off topic", but Barry mentioned these Nitrate explosives in this context: "Dont know if it's got anything to do with clusters though as I would have thought that if it did then I should have been attacked back then."
Was this well (many years) before your CH started Barry?
Just wondering if you need to be a CHer in a bout for Nitrates to become a trigger.
(Like with Alcohol in most CHers)

Does anyone think that we need to be "In a bout" for a Nitrate to trigger CH.
Like I said, Angina drugs wouldn't trigger CH for me.
Cheap, warm, flat cans of Bourbon didn't trigger anything either.
Beer triggered a mild CH, but I was in a 6/day bout at the time, who knows if it was really the Beer, or just normal CH?

This is kind of important to me. With an implant procedure looming, I will have 7 days during which to prove efficacy of the implant. I need a reliable trigger.
My CH is consistently inconsistent and entirely unpredictable, so I can think of no certain trigger.

You know I don't smoke or drink.
But, do you think the RAH could get me a stick of Jelly in one hand and a cigarette/glass of red in the other??? I have to think of something, short of drinking Nitroglycerin!!!

This is beginning to look scary, overkill.
Like curing dandruff by decapitation!

Cheers, Ben.

Posted in Inverting the head, a.k.a. The vampire bat treatment on 19 Dec, 2011 - 8:11 am

Hi to all,

Here's that post of yours Peter, I remember it (found it by Google search??, not on the site itself, strange one...)[

Some info on inversion therapies. Never tried this myself, can't stand being upside down! Watch out. This is a proprietary site, they are selling stuff, inversion tables and the like. Just letting you know I am no advertising shill!

I wish I could dig up more on it for you Brendan, but the only info I can find is mostly on Yoga and alternative medicine sites. I can't find a clinical trial on head inversion, clearly one needs to be done if it offers relief.

I have no experience with head inversion, but if it works for you, then that is good news. Trouble is, whilst some "complimentary/alternative medicine" sites are advocating full body inversion for headache treatment, they then speculate about how inversion is thought to work on headaches. They invariably demonstrate within the first few lines that they do not understand CH at all. I keep finding sites with info on head inversion, but they then go on to say that CH is an inflammatory disease, histamines, a sinus condition, or some form of energy blockage etc, etc. They usually fail to cover the basics of CH. Thus reducing the credibility of their claims. If you believe everything they say, head inversion is a "cure all":

Makes me a bit suspicious, but that's just me...
There seems to be very little in the way of a clinical trial result or some scientific speculation as to the mechanics going on during body inversion. It would be nice to read a theory on how it is thought to work on the vascular system, I am genuinely curious here...

I can find evidence that major postural changes can affect the vascular system and along with it a lot of potential CH triggers. So there is definitely merit in what you are saying.
I just find it difficult to take "credible" info on board from a company that sells potential solutions for CH when they are not even across the basic facts about CH, yet they are still advertising this method and many others as a headache treatment.

Still, I think you are onto something here. I remember that a Calcium Channel blocker called Diltiazem taken daily, was supposed to Vasodilate. The idea was to hold the blood vessels in a constant state of Vasodilation, the theory being that if the blood vessels have already expanded to maximum, they can go no further. They were right, I remained in a state of permanent Vasodilation, which gave me a Migraine for the entire 3 months that I trialled the drug. Not a bad trade-off, but the Migraine got a bit much after 3 months...
Diltiazem did what was theorised and intended - but it did not stop CH.
Botox was also supposed to hold the tissue(s) around my eyeball in a constant state, thus preventing attacks. This did not work for me.

From here, it looks like the only problem with inversion, is that inevitably you will have to stand back on your feet. Does this cause you a rebound attack when all the blood settles?

I know what my head is like, I reckon it would be a killer for me.
But relief is where you find it!

Cheers, Ben.

Posted in Untitled on 19 Dec, 2011 - 7:27 am

Yeah Les,
Your question got me thinking about Nitrate headaches (Not that they are a big problem). I remembered my old mate's story from mining up in Cobar N.S.W. from the late 70's and early 80's. It seemed an everyday occupational hazard for them, blokes were pointing out to eachother - "Hey mate, you have some black stuff on your forehead, better get that off there quick smart", or words to that effect. It seemed common knowledge that getting this Topex (Sorry Barry, if I have the name wrong, but I am not googling explosives!) on your head would guarantee a thumper of a Migraine.

I was purely wondering out of curiosity, where the first Nitrate headache had been discovered. Surely it was many, many years before the document I cited, even that document is 50 years old.

With specific relevance to CH though, it is common knowledge that Nitrates can cause Vasodilation. They are used to achieve Vasodilation in patients with Angina. When I have my Electrical nerve stimulator implant installed (Temporary for 7 days at first) we plan to use Nitrates in the form of Heart drugs for Angina, to trigger a CH.
Trouble is, I have had this Nitrate before and I had no CH.
My specialist tells me that a bottle of red wine is the way to go for me to set off a CH, full of nitrates, histamines, yeast, alcohol and all sorts of CH triggers.

Funny story:
My specialist had a public patient in the ward at Pain Management Unit attempting to trigger a CH attack by using red wine. (My specialist is not a madman, far from it. Sometimes we need to trigger a CH attack in order to treat it with O2 or another option, during a trial).

This patient sat in the ward, sipping his glass of red, bottle next to the hospital bed, much to the amusement of nursing staff. Invariably, over the course of the day, the nurses started to make jokes about 'joining in' or 'drinking on the job' and all that. It is rather funny, sitting in a hospital bed getting drunk for science, as I have done...
Toward the end of the day my specialist's sense of humour got the better of him.
When the patient attracted yet another playful comment from nursing staff, my specialist interjected - "Oh, don't worry - He's private".


Cheers, Ben.

Posted in Maybe this is for you or This works for me maybe it will works for you on 18 Dec, 2011 - 3:33 pm

Hi to all,
I note that a few regulars are going O.S. in the near future.
France got a few mentions, as did the winds in Geraldton I see!
Geraldton must be a windy place!
I remember the Fremantle Doctor of an afternoon - a Doctor it was indeed!

I have never left Australia, so I am far from experienced on this topic, but my head knows a bad blast of weather for my CH when it strikes. Down here in South Australia, the hot Northerly straight off the Gawler flood plain is not exactly a CH trigger, but an undesirable situation, leaving me more vulnerable to CH than not.
I run my HEPA filter/negative ioniser during CH, if this is the case. It helps.

However, there is nothing quite like a huge thunderstorm, or the South Westerly breeze here, straight off the Antarctic to clear my head. Years ago, I had been known to drive at obscene speeds near remote stretches of coastline with my head protruding from my car window like a Labrador, just for a "Blast" of fresh sea air for CH.
(Try explaining that one to the Coppers...Fortunately, they mistakenly believed my old Datsun 120Y to be incapable of achieving 200km/h and let me off with a warning, out of a combination of shock and sheer disbelief!)
I got a tip once from a Migraneur: "Beware the Mistral winds of France."
Could be complete bollocks, but there seems to be some anecdotal evidence amongst Headache patients...

Just an idea...

Cheers, Ben.

An excerpt from an article on winds and Headaches.

"Winds of ill repute".

Research from Israel dramatically illustrates the link between atmospheric ionization, physiological levels of serotonin, and consciousness. In many parts of the world, observers have noted that certain "winds of ill repute" have a discomforting effect upon individuals -- the Santa Ana winds in Southern California, the Chinook winds in Canada, the Mistral winds of France, the Zonda winds of Argentina, Sirocco winds of Italy, and the Sharav or Chamsin winds of the Near East. Symptoms such as sleeplessness, irritability, tension, migraines, nausea and vomiting, scotoma (diminished vision), amblyopia (dimness of vision), and edemata (swelling of tissue) have been noted. These symptoms resemble the effects of hyper-production of serotonin. In weather-sensitive people, urinary serotonin output showed a steep rise two days before the onset of the Sharav winds in Israel. They remained high the following day and dropped only after the winds began. In addition to increase in positive ionization, the salient meteorological features of these winds are a rapid rise in temperature and a decrease in humidity. These factors by themselves, however, fail to account for the physiological changes noted. The negative psychological and physiological effects are attributed to the rise in the ratio of positively charged ions in the atmosphere preceeding the onset of the winds. It is interesting to note in this connection that the word doldrums has two dictionary meanings: (1) dullness; a state of listlessness and boredom, (2) a part of the ocean near the equator abounding in calms, light winds, and squalls.

On the other hand, in locations where (-) air ion densities are relatively high, such as near water falls, the general effect of the local environment is tranquilizing and conducive to good health. It is no wonder then that scientists in the know, such as Dr. Albert Krueger in Berkeley, use air filters and negative ion generators at all times to restore the environment around them to its natural unpolluted and electrostatically balanced state.


Posted in Untitled on 17 Dec, 2011 - 6:41 pm

Hi to all,
I got a question a while back about Nitrates causing CH.
Then I remembered a story a miner friend of mine told me.
He said he used to get the most intense headaches when installing charges of Topex? or "Black Sausage" explosives in the 70s. He said he could accidentally get some explosive on his hands, if he accidentally wiped his forehead, he would get a smear of the black explosive on his head - and a massive headache to go with it.

We get a few blokes in here from the minig industry.
Any correlation? Or is my info just extremely outdated? smile

E. L. HARRIS, M.R.C.P., M.R.C.P.Ed.

Cheers, Ben.

Posted in No Brainer... on 17 Dec, 2011 - 6:16 pm

Heather and Peter,

Sorry I hadn't explained myself properly.
I ditched Prednisolone back in August at the first sign of Gastric trouble, haven't been back there since, no plans to - Pred is Dead.
The damage is done re: the gut. I have not been able to risk using Aspirin after the fact due to the possibility of an unconfirmed Ulcer rupturing. I got a graphic warning about that from a new GP yesterday. (I have a second GP now for the first time in 12 years, I need a fresh set of eyes on my case).

With regard to Imigran, the home page on the site is no longer correct in a way (Don't change it yet Roger).
Imigran FDT can be difficult to get hold of in the quantities required to bring some relief from intractable CH. It is PBS approved for use only in "Migraine" conditions, hence 1 or 2 boxes per year may be considered "Normal" use of the drug in a typical Migraine patient, perhaps even 1 or 2 x boxes of 4 pills per month for a bad Migraneur.

When a GP prescribes Imigran for Cluster headache in Australia, the GP is bending the rules a bit. It is only PBS subsidised/approved for Migraine treatment, so for me to obtain the drug, I have to be a MIGRAINE/Cluster Headache "Sufferer".
I can't believe I am going to say this, but FORTUNATELY for me, I have Migraines too, (happy, happy, joy, joy) so I am eligble in a way.
(This only frustrates me more, once again the treatment overlap from Migraine to CH creates yet more confusion amongst GPs, Neurologists and Pharmacists alike.)

I just checked the PBS A-Z listing of medications - Sumatriptan (Imigran) does not even appear on the general schedule???? Go figure... However, I have been shown the details, on screen, in the "Practitioner's" section of the PBS site, it is there - 24 pills in 24 days, my specialists checked it for me.
All the other data on Imigran is available through the manufacturer's site GSK, or on the NPS medicines pages.

Basically from personal experience it goes like this:

I phone the GP and ask for another Imigran script. (Precedent already set over 5 years)
He phones the PBS for a "Regulation 24" authority script for Imigran FDT on the basis that I have Migraine and gets an authority script for it. (There's your loophole)
I pick up my script from the GP and head to the Pharmacy.
The Pharmacist asks if I am going away on holiday, I say "No".
The Pharmacist then points out that the script I have is a "Regulation 24" script, which under normal circumstances means I must be going on holiday. (Because in a Pharmacy, Reg 24 scripts are issued for the convenience of those that can't get to their Pharmacy from their 4WDs and caravans - the Reg 24 mechanism is not there to make my life any easier, although we utilise this method to get Imigran to CHers)
Nobody says anything as I disappear into the sunset - Imigran in hand.
To my knowledge, there are no external audit processes on these scripts, so everyone goes home happy, including me.

It allows me to collect 6 boxes of Imigran (24 tablets) in one go.
I have had my Prof. check out the actual constraints at Federal level - the story is, 24 pills in 24 days - that's it. We have to keep a lid on using this amount of Imigran tablets in CH or someone will twig and shut it down. Even though the manufacturer says we can have 300mg per day, the PBS does not back this up for people diagnosed with CH.
They seem happy for a Migraneur to use 3 X 100mg Tablets per day.
If I need any more than 6 boxes in 24 days, I will have to get a private unsubsidised script which is $114 for the 6 boxes. The Doctors and Pharmacists couldn't give a toss how much Imigran I take (short of overdosing) once the private scripts come out, it is all about the cost to the Government scheme. Patient safety is a clear second to subsidy costs.

I do acknowledge that GPs and Pharmacists do stick their neck out in order to dispense in this method and their co-operation is greatly appreciated.
My patient care has been greatly assisted by reasonable people helping a patient in severe pain, something they do out of genuine concern for their patient.

If I need any more than 1 Imigran tablet per day, I go into "Interdose withdrawal" or "Rebound attacks". As Imigran is so quickly excreted from the body (Total plasma clearance in under 90 minutes usually), it can leave one's vascular system wondering which way to go, often it is the wrong way - Vasodilation, again. A couple of weeks of this and I am in a rebound CH cycle caused by medication overuse.
"Stretching the rubber band back and forward" I call it.
Yes, a MOH - Medication Overuse Headache can also manifest itself as a Cluster attack.
OR: A cluster attack could be a product of medication overuse, however you see it.

This is where Aspirin was so vital to me.
It can outright abort my CH in under 20 mins, if it is an attack under 5/10.
I will use Imigran FDT to directly abort a stronger attack, but follow it up with 900mg of Aspirin within the hour. This way, as the Imigran reaches total clearance from my body, my blood is still thin enough not to be able to go into a rebound attack caused by the Imigran. Purely anecdotal evidence that one, proven over years of experimentation - it works for me. This technique has served me well. It has allowed me to use Imigran at 1 per day and follow up with up to 9 Aspirin tablets per day.
It can work on a one-off basis, to "bust" a cycle to some degree.
Either way, it minimises attacks for me, an important development indeed.

If a force 10 attack comes on in under 30 seconds (and it does), I drop to the floor, but on the way down, I whack an Imigran injection in my leg before I lay down, shake and convulse until I eventually pass out from the pain.
I lose 4 hours, then get up and do it again.
This can go for 10 months at least and usually does.

Hey, at least I got 2.5 months with minimal CH.
EXCELLENT! Honestly!
Relief is where you find it!

Sorry for the whinge folks.
Normally, I try to come onto the site with some hope and positive news, not to bitch about my CH. I have had it since birth so its no biggy really, I know nothing else.
There are so many stronger people and those worse off than me out there. I send all my old drugs to a 3rd world charity campaign.
After all those 60 odd drug trials, there were a lot of pills left over.
I like to think that somewhere in the world, someone is taking my old Verapamil for free and getting some relief.
Stay safe over Christmas everyone!

Cheers, Ben.

Posted in No Brainer... on 17 Dec, 2011 - 9:33 am

Sorry everyone,
I wrote with CH still wearing off - something I normally don't and should not do. The attacks are way too bad to go near a screen for at least 3 or 4 hours after, but they are getting closer together, so I don't expect to see much of anything within a few weeks.
Once I hit 6 a day with a 4 hour recovery time, I am toast without Aspirin.

Thanks for the ideas folks.
Nice to see people can deal with my warped sense of humour, or lack thereof at times.
Unfortunately, these NSAIDs can cause trouble with ulcers, no matter how they are delivered.
With Aspirin - If I thin the blood, I may be in trouble. This is only short term, until the Endoscopy is done and I have quantified and/or treated the ulcer issue.
Nurofen has never worked for me in CH. Even straight prescription Brufen in high concentrations has not touched my headaches.
Even went all the way up to Indomethacin (A real gut burner) and had no joy with that, this was actually a clinical test to rule CH in or out. If it responds to Indomethacin, it is not strictly a CH. This kind of lends weight to my theory that CH is not an inflammatory condition.

I have another drug for this issue here that I have not yet tried - Misoprostol.
It is designed to protect the gut from ulcers forming from taking NSAIDs like Aspirin. It is one of the scarier data sheets I have seen, I am not taking that. Nexium has proven equally effective as Misoprostol but far better tolerated in clinical trial results. I will stick with the Nexium and await the joyous 'camera-down-the-throata' procedure... again.

It may seem "off topic" or irrelevant to CHers, but complications are all part of the territory for long term users of Pharmaceuticals in CH management. From time to time I may seemingly drift off topic, but I try to keep it relevant for CHers and the trials of living with CH itself.

I have stockpiled Imigran FDT like a squirrel (not taking it) and willingly "suffered" while I do it because I know things will get much worse, I will need more Imigran than can be supplied mid-CH bout. This is the beginning again. Now I have the luxury of being allowed 1 tablet per day. I know the dosage is higher and chances are, I may use 2 or more per day, but 28 pills in 28 days is the limit through the PBS.

Back on the Imigran it is then.

Thanks for you help everyone.

Cheers, Ben.

Posted in No Brainer... on 16 Dec, 2011 - 9:19 pm

Hi to all,
Back in July/August this year I was in a bad way. I was on 50mg Prednisolone, bunch of other CH preventives and the CH was still cutting through quite well. I asked a GP (Who shall remain nameless, not to be confused with my CH specialist...) if I could take my frontline drug of 30 years - Aspirin, whilst on Prednisolone. Of course all the research says, DO NOT TAKE CORTICOSTEROIDS WITH ASPIRIN, IT MAY RESULT IN STOMACH ULCERS. The 2 drugs are clearly contraindicated.

I consulted the experts to see if this parameter was variable, as it sometimes is. To see if there was another drug I could take to protect my stomach from Aspirin/Pred combination. General consensus amongst the professionals was "Suck it and see...".
I took Aspirin whilst on Pred and guess what? A free Duodenal stomach ulcer (Yet to be confirmed by Endoscopy). After 3 or 4 months of being fed a truckload of Nexium for the symptoms and some serious persistence on my part, a referral for an Endoscopy was finally achieved. I await that one with baited breath...
In the meantime I am left with a possible stomach ulcer.
Instructions NOT to use Aspirin under any circumstances.
CH that is roaring 1 or 2 serious attacks per day now and 4 or 5 shadows per 24hrs.

This is the first time since I was 4 that I cannot use Aspirin.
I use it for every CH up to 5/10 on the scale, before the Imigran comes out.
I try to avoid Imigran, as the rebound cycle is really bad for me.
I cannot find an alternative anti-inflammatory, or mode of delivery.
Voltaren, Ibuprofen, Indocid are all off the list.

Does anyone know of another anti-inflammatory drug that will not upset the gut?
Or, alternatively another mode of delivery for an NSAID? IV, patches, anything other than down the neck!
Anyone tried Celebrex or something else gentle on the gut?

I just slapped half a tube of Voltaren emulgel onto my forehead, mid-CH in desperation. Clutching at straws.
I knew it would not work, I was right.
Might as well have thrown a $20 note down the road and gone back to bed.

I think I just thought of a new mode of delivery of Voltaren for my Pharmacist, I will have to buy him flowers first though....

Cheers, Ben.

Posted in Dr. Michael Mosley takes psilocybin on 13 Dec, 2011 - 4:54 pm

Lifted from "The Beckley Foundation":

The Psychedelic Solution.

Drug Taboos may block a potential Treatment for Cluster Headaches.

“I had a gun sitting on top of the computer monitor,” says Bill McConnell. “And I typed ‘suicide’ plus ‘headache’ into the search bar to leave an explanation for what I was about to do.”

McConnell, who is 39-years-old and wears a blue and white baseball cap, is commiserating with fellow sufferers of cluster headaches—a condition some doctors call the most painful known to medical science, and one that numerous sufferers say nearly drove them to take their own lives—in a room at the Hyatt Regency O’Hare on the outskirts of Chicago. He, like the rest, arrived a day early for the annual cluster headache conference organized by a group called Cluster Busters.

Though they look like ordinary people, and could easily be your neighbors or colleagues, clusterheads, as they jokingly refer to one another, have excruciating and extraordinary life stories. Their condition is well documented, poorly understood—and devastatingly painful. The medications they use to treat or at least reduce the suffering are sometimes life-threatening, often physically damaging, and usually psychologically and emotionally debilitating. (“The disease won’t kill you,” says McConnell, “but the treatments might.”) As a rule, they’ve gone mis- or undiagnosed for years, been called hysterical by general practitioners and neurologists unfamiliar with the condition, and endured countless failed attempts at a cure. Now, thanks to an active online community, and organizations like Cluster Busters, some sufferers are finding relief in an unlikely treatment: the serotonergic psychedelic drugs LSD and psilocybin, two chemicals that helped fuel the psychedelic revelry of the 1960s. Anecdotal reports of the drugs’ effectiveness against cluster headaches have even begun to attract the attention of major research universities.

Many cluster headache sufferers believe the term “headache” is a misnomer that doesn’t convey the sensation, or underlying cause, of an attack. McConnell says an attack is like having a hot ice pick pushed into the corner of his eye and out through the back of his skull; others at the conference used the metaphor of a demon crushing one’s head and jamming his finger into one’s eye socket—an order of magnitude worse than a severe migraine. “I would rather give birth without a painkiller than get ‘hit,’ ” says Becky Ulissi, referring to a cluster headache attack, of which she has up to eight each day.

The most common form of the condition is said to be episodic because sufferers are free from the headaches for most of the year. But during two-to three-month episodes, the headaches hit up to 10 times per day, and generally last anywhere from 45 minutes to three hours. Like clockwork, the episodes almost always start and end around the same time each year, and the headaches often come at the same times each day.

Nobody is certain what actually causes cluster headaches. Theories have ranged from defects in the trigeminal nerve, which branches out across the jaw, face, and forehead, to the irregular swelling of major cranial veins. Recent fMRI studies suggest that these theories are incorrect, and instead point to structural changes in the hypothamalus—the part of the brain responsible for circadian rhythms and other life-sustaining functions. Traditional treatments focus on aborting a headache that has started by self-injecting drugs like sumatriptan or dihydroergotamine, which both share chemical and biological similarities with the neurotransmitter serotonin, or preventing attacks altogether with calcium channel blockers like verapamil and steroids like prednisone. Pure oxygen is often effective at aborting an attack that has just started, but it must be administered almost immediately, and requires the correct type of oxygen mask and tank to be nearby. Unfortunately, long-term, heavy use of most traditional treatments can cause terrible side effects, including poor circulation, organ fibrosis, blood pressure and cardiac disturbances, type 2 diabetes, osteoperosis, anxiety, and other biological and psychological disorders.

Bob Wold, the president of Cluster Busters, has a story like many of the group’s members. His headaches went misdiagnosed for four years (he even had a few teeth pulled because his dentist suspected hidden cavities were causing the pain—a common, and unproductive treatment among wrongly diagnosed cluster headache sufferers). When he was properly diagnosed, none of the 75 medications he tried gave him lasting relief. During a particularly painful episode in which he began to consider a radical, and mostly unproven, surgical treatment that would have involved severing his trigeminal nerves and killing all sensation in his face, Wold came across an online discussion about using LSD or psilocybin to treat cluster headaches. He was hesitant, but 45 minutes after his first dose of psilocybin, he could tell that something remarkable was happening: “My head was clearer than it had felt in 20 years.”

But in his quest for a treatment, Wold had also broken the law. According to the Controlled Substances Act, LSD and psilocybin fall under Schedule 1, the most restricted class of drugs in the United States. Unlike all other drugs, those in Schedule 1 cannot be prescribed for any reason, and people caught in possession of them are subject to serious jail time no matter their medical condition. (Cocaine and methamphetamine, by comparison, can be prescribed by a doctor, and are listed in Schedule 2.) These drugs are so restricted by the DEA that researchers at the country’s top universities find it almost impossible to get the permission and funding necessary to study the substances in humans. LSD, which is hard to make, is particularly difficult for cluster headache sufferers to find. But a legal gray area—and a little help from mother nature—makes psilocybin much more available. That’s because while “magic mushrooms” contain psilocybin, their spores do not—and the online trade in psychedelic mushroom spores is brisk, and legal, in most states. (Actually growing those spores into mushrooms is considered the illegal manufacture of a controlled substance, so the legal loophole only makes the mushrooms easier to find. Possession is still illegal.) In addition, the legality of collecting wild-grown mushrooms containing psilocybin is murky.

On the Cluster Busters Web site, the group warns that mushrooms can vary in potency, but 1 to 1.5 grams of “cracker dry” P. cubensis mushrooms—a dose that Wold says is effective for many cluster headache sufferers—produces a mild stoning effect and the sensation of slightly brighter colors. Wold told me it was about as intoxicating as one or two glasses of wine. McConnell says that the wildest part of his first experience was noticing that the lights on the Christmas tree seemed a little brighter and more saturated than usual. At these levels, hallucinations and far-out magical thinking are avoided, though some cluster headache sufferers require large enough amounts to induce a full psychedelic trip.

As I spent time at the Cluster Busters conference in Chicago, those suffering with this horrible condition kept pulling me aside, wanting to share the same message: that all this talk about LSD and psilocybin was not about getting high, but about treatment. They all told similar stories about being afraid of trying something illegal for the first time; about painstakingly adjusting doses to find the right amount for relief while preventing or at least limiting psychedelic experiences; and about the incredible relief of ending a cluster period, or averting the next one from coming.

In the six years since he founded Cluster Busters, Wold has collected a cache of survey-based data on cluster headache sufferers who have tried LSD or psilocybin. A normal approach to the novel treatment involves taking one to three doses of either substance (Wold says LSD usually works as a single dose, whereas psilocybin often requires three doses spread over a few days) to abort a cluster headache episode that has already started, and twice-yearly maintenance doses to prevent new episodes from coming. (Users are left to figure out what a “dose” actually amounts to, since tabs of LSD vary in strength, and some batches of mushrooms have more psilocybin than others. And because they’re both illegal, one doesn’t get active dose information and measurements from a dealer like one would from a registered pharmacist—though Wold insists that both are usually taken in small enough amounts that the “doses” remain subpsychedelic.) Wold says that he has documented more than 500 cases of people using this approach, and that roughly 75 percent of those who have tried it have had significant reductions of their symptoms.

Self-reported treatments should always be viewed with skepticism, says Dr. John Halpern, director of the Laboratory for Integrative Psychiatry, Division of Alcohol and Drug Abuse at McLean Hospital, and assistant professor of psychiatry at Harvard Medical School, who attended the Cluster Busters conference. But the strength of Wold’s anecdotal evidence warranted further investigation. So in 2006, Halpern and colleagues Andrew Sewell and Harrison Pope Jr. published an analysis of interviews with 53 subjects who had tried LSD or psilocybin for their cluster headaches. What they found was astounding: 41 percent of those who took psilocybin during a cluster episode (which can last for months) reported a decreased intensity or frequency of headaches, and an additional 52 percent said the episode ended altogether; 95 percent of those who took psilocybin between episodes said their next episode was delayed or totally averted. The study was preliminary, unblinded, and uncontrolled, but convincing enough to prompt more methodical research. McLean Hospital and Harvard Medical School are currently reviewing a prospective study using psilocybin to treat cluster headaches in a controlled environment.

But Halpern was puzzled by something he saw in the survey data that members of Cluster Busters already knew: many of those interviewed found relief from a nonpsychedelic doses. Was it possible that something else was helping the cluster headaches, rather than the hallucinogenic experience itself? Could the two be separated? After all, psilocybin and LSD are chemically similar to the neurotransmitter serotonin, which plays an important role in the part of the brain linked to the headaches, and to some of the drugs used as traditional treatments. With support from McLean Hospital, Harvard Medical School, and Medizinische Hoschule Hannover in Germany, Halpern and a team have begun a pilot study treating cluster headache patients with BOL (also know as 2-Bromo-LSD), a substance almost identical to LSD yet not psychedelic. Halpern presented a preliminary round of results earlier this year at the International Headache Congress, and though only a few subjects have gone through the study, each as had a strong measure of improvement.

The early success of BOL gives sufferers hope for a legal, low-side-effect therapy. But it takes years to get a new drug on the market, and there are no promises that BOL will continue to perform so well if it makes it to later-stage clinical trials. In the meantime, some clusterheads—who euphemistically refer to their writhing, rocking, hair-pulling, wall-punching, head-crushing, crying, screaming attacks as “dancing”—will do what they have to do to relieve their pain. Even if it means breaking the law.



Posted in Don't Let The Beast Rule Your Life on 12 Dec, 2011 - 12:25 pm

I agree Matt. Don't let it rule your life.
I have had to make it through a gig ON STAGE with a CH, boy did that take some fooling...
I am on DSP too now and in a year when I got a stomach ulcer from Pred, dropped a car on me, had chickenpox, half a dozen drug trials gone wrong and a thousand CH attacks etc etc (Whinge, whinge, yeah I know) - I still managed to make this guitar from scratch, my first. (Changed my pic so you can see it)
I have no idea how I ever got it done under the circumstances - I just gave 110%. It nearly killed me, I took all that Pred just to finish the sucker!

Shame I can't play it at the moment as my arms are too stuffed, but it took some serious determination, some high dose Pred, Imigran and a LOT of persistence to finish it.
It shows what can be done in spite of CH, while you still have it roaring full bore.
I spent many a night in the TAFE carpark sticking Imigran needles into me, throwing up other meds in the TAFE gardens, unknown to my instrument making Lecturer, but I got there.
It is a wonderful instrument and is all I have to show after a tough year of CH.

“One good thing about music, when it hits you, you feel no pain.”
― Bob Marley

I know that quote should have an asterisk* or disclaimer for CH, but I think you showed how it can be done at that Dragon gig mate. Inspirational stuff indeed.

My thoughts are with you Matt.

Cheers, Ben.

Posted in Untitled on 12 Dec, 2011 - 12:16 am

Hi Heather,

I had probably 20 odd shots across my eyebrow, cheek, into my forehead, around near my right ear and some across the scalp (from memory...). All shots surrounded my right eyeball. It looked like a series of mozzie bites. We didn't even use the whole vial of Botox, about 4/5ths of it was used.
I personally witnessed a nurse dispose of the remaining botox into the bin.

The RAH can get it into you in a correct clinical setting for free with the right approvals.
Trouble is, all the referalls and waiting, it would be at least 2 years before you saw any Botox treatment there. Not sure if any other practitioners know where/how to inject the stuff in CH here in SA.

In direct comparison to other routine medical procedures, this has been carried out so few times, I suspect the injection method is subject to ongoing debate or variations in technique amongst Doctors. It is hard to find a consensus from Doctors on how it is done and it seems that no two patient accounts or experiences with Botox are alike.

I am sure there are many techniques being employed by different practitioners by now.
Relief for my CH was supposed to be instantaneous.
I spoke to Pr Rolan after a few days and a couple of dozen CH attacks.
I asked "When is this stuff supposed to start kicking in?" as I had been hammered with attacks in the meantime. He said it should have worked day 1.
The ensuing barrage of CH attacks proved its inefficacy in me.
Some drugs you can feel, some feel like they have modified pain somehow and might have the potential to be a "Hit" on the target of CH - like Topamax or Endep was
Botox really felt like a total miss to me, I noticed absolutely nothing other than the paralysis of the eyebrow, which did take about a week to kick in.
Alas, it did nothing for me!

Sorry if I take away hope for Botox here, it may work for you.
The drug has a proven safety record, so why not?

I reckon there must be some stones left unturned out there as far as Pharmaceuticals go. I have seen so many options Heather. If Topamax was working, maybe another anti-convulsive drug is a good idea. Sodium Valproate, Gabapentin, Lyrica, Lamotrigine etc. Or maybe Verapamil's cousin - Diltiazem if Verapamil was ever effective for you.
Deseril perhaps, Pizotifen, or Lithium Carbonate.
Atenolol, Propranolol...
There are so many options it would fill the page.
I have catalogued 330 chemical compounds known to have been trialled in CH, one of them has to work surely!
Surely there are some as yet undiscovered options for you!

You know all these anyway, sorry for telling you the obvious, but readers may see an option here. Remember, I am no Doctor!

Cheers, Ben.

Posted in It's not easy being Green... (pointless trivia) on 11 Dec, 2011 - 7:51 pm



Nothing pointless about it!
My Specialist encourages me to do my serious thinking about CH treatment options whilst I am not under the duress of chronic and severe pain.
Patients generally make much better decisions about things like implants when not "suffering" (there's that bloody word again...)
Mid CH, I would gladly have my head opened by an amateur Butcher for any procedure if it worked - a bad decision indeed.

But, given the luxury of a couple of weeks break from it, I am more likely to think these things over and make better quality decisions about my treatment options over all. Hence the implant option over radio gamma-knife surgery in my case.
I take advantage of the break (I know it is easier to forget CH when it leaves) to research and plan my next angle of attack for the next bout when it hits.
Hate to be a pesimist about it, but for me it is a matter of when they hit, not if they hit.
I would be a fool not to exploit any short period of lucidity I can get between bouts.
Enjoy the break, nobody here can begrudge you that.

Too much Imigran can make you Green too!
Years ago, I once had Imigran injections and tablets for weeks, working up to 5 injections in 24 hours - I looked the same colour as Shrek!
Serotonin Syndrome me thinks...
Don't try this at home folks, I am a trained unprofessional...

Stay the right shade of green!

Cheers, Ben.

Posted in Dr. Michael Mosley takes psilocybin on 09 Dec, 2011 - 1:16 pm

Hi to all,
I have tried psilocybin for my CH, albeit incorrectly or dubiously trialled unprofessionally by me at home. I seem to have been misunderstood in relation to my position on Psilocybin. Whilst it did nothing for me, I will not dismiss ANY treatment option available to CHers. If it works for you, I am honestly very happy to hear this.

With my level of CH, room for legality, morality and such issues comes a distant second to finding relief - wherever I can. For the record, the only ilicit drugs I have NOT tried in my CH (or ever for that matter...) are: Cocaine, Heroin and MDMA (Ecstacy).
I have extensively tested out the rest, with many varied and unpredictable outcomes.
Not something I would recommend, but after 20 odd years of mis-diagnosis, I was willing to try anything back in the 90s. Now I have access to world class healthcare specialists, dabbling in ilicit drugs is no longer necessary for me (whew...).
It would only serve to complicate my specilaist's efforts as a scientist.
We have so many variables in a CH drug trial, that throwing in any other ilicit/unknown factors puts my clinical test results in doubt and my credibility as a patient along with it.
Not just mushys, I mean St John's Wort or Ginseng etc - anything that is a variable in what is a closely controlled science experiment.

Here is Dr Michael Mosley trialling Psilocybin in a clinical setting.


Cheers, Ben.

And to you Shell, I apologise if I have offended you over mushys, it was never my intention.
I would like to work with you, not against you.
We are all in this for the same reason after all...
I support ALL efforts and experiments that may one day get us CH relief.

Good luck to all Psilocybin users!

Yeah, I know - gotta rest the arms...


Next-generation vehicles for targeted drug delivery.

A PATCH invented by University of Queensland researcher Mark Kendall and his colleagues to replace needles and syringes in vaccination has been described by experts as a paradigm shift, with the potential to save millions of lives.

The size of a postage stamp, the patch has thousands of projections about 100 millionths of a metre long with tips coated in vaccine, Kendall tells The Weekend Australian.

"When the nanopatch is applied to the skin, the projections breach our tough outer skin layer to reach our immune 'sweet spot' layers of skin abundantly rich in immune cells," he says.

Tests on mice suggest that the patch works with only one-hundredth of the dose needed when delivered by a needle. It would boost vaccination rates in developing countries, the team says. It is about to undergo clinical trials, and the team hopes it will be on the market within five to 10 years.

Could this be the next mode of drug delivery for preventive CH drugs too?

Exciting prospect indeed, to eliminate needles and bypass all the Gastrointestinal issues associated with long term drug use in CH. I hope they use this idea for other drugs, not just vaccines. (No more Imigran injections perhaps? It is drawing a long bow, I know, but in looking to the future - I live in hope...)

What an innovation!

Cheers, Ben.

Posted in Tips for the self-researchers - Quantative research data. on 09 Dec, 2011 - 10:12 am

Yes Heather, If anyone find out I am typing - I shall be summarily killed...
Dr's orders...

Yes, I will rest these arms.
Thanks Heather.

Cheers, Ben.

Posted in Tips for the self-researchers - Quantative research data. on 09 Dec, 2011 - 10:04 am

Journal Impact Factors

Journal Impact Factor is from Journal Citation Report (JCR), a product of Thomson ISI (Institute for Scientific Information). JCR provides quantitative tools for evaluating journals. The impact factor is one of these; it is a measure of the frequency with which the "average article" in a journal has been cited in a given period of time.

The impact factor for a journal is calculated based on a three-year period, and can be considered to be the average number of times published papers are cited up to two years after publication. For example, the impact factor 2011 for a journal would be calculated as follows:

A = the number of times articles published in 2009-2010 were cited in indexed journals during 2011

B = the number of articles, reviews, proceedings or notes published in 2009-2010

impact factor 2011 = A/B

(note that the impact factor 2010 will be actually published in 2011, because it could not be calculated until all of the 2010 publications had been received. Impact factor 2011 will be published in 2012)

Impact factor of Nature, Science and Cell journals can be found on their journal websites.

Click here to find out more!
The lists of Impact Factors have been removed from this site (Science Gateway) due to copyright violations. Science Watch provides ranking and impact factor for selective journals. The list is located here:

Check the quality of your research articles as rated by the profession itself!

I picked up this tip from Pr Rolan.
Thanks to him for this vital info. (and much more like it!)

Cheers, Ben.

Posted in Untitled on 09 Dec, 2011 - 9:56 am

Botox was expensive for the Hospital - not me, it was approved for use in my CH by RAH's internal ethics committe and a drug approval board, ultimately at no cost to me. I got paralysis of my eyebrow, nothing else, no droopy eyelids mate, no other side effects. I think muscle paralysis was the idea, to hold things around my eyeball in a constant state, thus hopefully preventing attacks.
It was a sketchy idea at best, but hey, that was afew years ago now.
They may have a new approach. Goadsby does this procedure different to Pr Rolan.
But Goadsby's demo on "Catalyst" is for Migraine, not CH.

Go for it Heather!

Sorry for being so brief, but my arms are still stuffed.

Cheer, Ben.



Howard Walter Florey, Baron Florey OM FRS (24 September 1898 – 21 February 1968) was an Australian pharmacologist and pathologist who shared the Nobel Prize in Physiology or Medicine in 1945 with Sir Ernst Boris Chain and Sir Alexander Fleming for his role in the making of penicillin. Florey's discoveries are estimated to have saved over 6 million lives, in Australia. [1] Florey is regarded by the Australian scientific and medical community as one of its greatest scientists. Sir Robert Menzies, Australia's longest-serving Prime Minister, said that "in terms of world well-being, Florey was the most important man ever born in Australia"

Sir Howard Walter Florey (1898–1968)—awarded the Nobel Prize in physiology or medicine in 1945 ‘for the discovery of penicillin and its curative effect in various infectious diseases’.
Howard Florey was born in Adelaide and studied at the Collegiate School of St Peter and the University of Adelaide. After graduating in 1921, he went to Oxford on a Rhodes scholarship to study physiology. After transferring to Cambridge, he earned his PhD in 1927 and MA in 1928. From 1936 to 1962 he was Professor of Pathology at the Sir William Dunn School of Pathology at Oxford.

In 1938, Florey began building on earlier work by British scientist Alexander Fleming on the antibacterial action of a mould, Penicillium notatum. Working with Ernst Chaim, a refugee scientist, Florey investigated the biochemical properties of various antibacterial substances and selected penicillin as the most promising. Florey’s work turned penicillin into a practical drug that subsequently saved millions of lives. Florey, Chaim and Fleming were awarded the Nobel Prize for developing a substance of ‘immediate value to mankind’.

Sir Frank MacFarlane Burnet

Sir Frank MacFarlane Burnet (1899–1985)—awarded the Nobel Prize in physiology or medicine in 1960 ‘for discovery of acquired immunological tolerance’.
Frank MacFarlane Burnet was born in Traralgon, Victoria, and was educated at Geelong College and the University of Melbourne, qualifying MBBS (Bachelor of Medicine, Bachelor of Science) in 1922 and MD in 1924. Apart from a few years overseas, Burnet spent his entire career from 1923 onwards at the Walter and Eliza Hall Institute of Medical Research in Melbourne.

Burnet was twice nominated for the Nobel Prize for virology before he won it for immunology. He first speculated on antibody production in 1941, suggesting that animals became immunologically tolerant to antigens to which they were exposed in embryonic life, thus ‘learning’ in the womb to distinguish between foreign agents which had to be attacked, and self-substance which had to be left alone. English scientist Peter Medawar confirmed this experimentally and he and Burnet were jointly awarded the Nobel Prize.

Sir John Carew Eccles

Sir John Carew Eccles (1903–97)—awarded the Nobel Prize in physiology or medicine in 1963 ‘for discoveries concerning the ionic mechanisms involved in excitation and inhibition in the peripheral and central portions of the nerve cell membrane’.
John Eccles was born in Melbourne and was educated at Warrnambool and Melbourne high schools and the University of Melbourne. In 1925, he graduated brilliantly and won a Rhodes scholarship to Magdalen College, Oxford, where he worked in the laboratory of renowned English neuroscientist Charles Sherrington.

Eccles had a life-long interest in the relationship between the mind and the brain. Before World War II, researchers had debated whether transmission at the junctions (synapses) between nerve cells in the central and peripheral nervous systems was chemical or electrical. Eccles conducted pioneering experiments which convinced him that synaptic transmission was chemically mediated. In 1952, he was appointed foundation Chair of Physiology at the John Curtin School of Medical Research in Canberra, where, with other colleagues, he concentrated on the biophysical aspects of synaptic transmission—work that culminated in his being jointly awarded the Nobel Prize.

Sir John Warcup Cornforth

Sir John Warcup Cornforth (1917–)—awarded the Nobel Prize in chemistry in 1975 ‘for his work on the stereochemistry of enzyme-catalysed reactions’.
John Cornforth was born in Sydney and educated at Sydney Boys’ High School and the University of Sydney. He chose chemistry as his career and, although deaf from otosclerosis by the time he entered university at the age of 16, Cornforth graduated with first-class honours and the University Medal in 1937.

Cornforth took up a scholarship to work with Robert Robinson at Oxford, where he completed a doctorate on steroid synthesis. He later worked with Robinson on a successful chemical synthesis of cholesterol before turning to the work for which he was awarded the Nobel Prize—the biosynthesis of cholesterol from acetic acid.

Professor Peter Doherty

Professor Peter Doherty (1940–)—awarded the Nobel Prize in physiology or medicine in 1996 ‘for discoveries concerning the specificity of the cell mediated immune defence’.
Peter Doherty was born in Brisbane, Queensland, and studied at Indooroopilly High School and the University of Queensland, where he did veterinary science. He gained a master’s degree in 1966 for research on leptospiriosis in cattle. He earned his PhD from the University of Edinburgh in 1970.

Doherty received the Nobel Prize with a Swiss colleague, Rolf Zinkernagel (see below), with whom he worked at the John Curtin School of Medical Research at the Australian National University from 1972 to 1975. Doherty carried out the immunopathology experiments while Zinkernagel, a PhD student at the time, undertook the in vitro work. Doherty and Zinkernagel discovered how killer T-cells, one of the building blocks of the immune system, recognise and destroy viruses. This led to a better understanding of auto-immune diseases such as multiple sclerosis and to treatments that increase the acceptance rate for organ transplants.

Professor Barry Marshall and Dr Robin Warren

Professor Barry Marshall and Dr Robin Warren—jointly awarded the Nobel Prize in physiology or medicine in 2005 ‘for the discovery of the bacterium Helicobacter pylori and its role in gastritis and peptic ulcer disease’.

Robin Warren (1937–) was born in Adelaide, South Australia. He was educated at the Collegiate School of St Peter in Adelaide and studied medicine at the University of Adelaide. After working at the Royal Adelaide and Royal Melbourne Hospitals, he took up a pathology position at the Royal Perth Hospital in Western Australia in 1968.

Professor Barry Marshall (1951–) was born in Kalgoorlie in Western Australia and was educated at Newman College and the University of Western Australia. He graduated MBBS (Bachelor of Medicine, Bachelor of Science) in 1975. In 1981 he transferred to the Royal Perth Hospital’s gastroenterology division, where he met Robin Warren.

Together, Warren and Marshall discovered Helicobacter pylori in 1982. They concluded that this bacterium—not stress—causes more than 90 per cent of duodenal ulcers and up to 80 per cent of peptic ulcers. Their work revolutionised the treatment of gastro-duodenal ulcers by enabling an antibiotic cure and has led to a significant reduction in the prevalence of gastric cancer.

Dr. Elizabeth Blackburn

Elizabeth Helen Blackburn, AC, FRS (born 26 November 1948 in Hobart, Tasmania) is an Australian-born American biological researcher at the University of California, San Francisco, who studies the telomere, a structure at the end of chromosomes that protects the chromosome. Blackburn co-discovered telomerase, the enzyme that replenishes the telomere. Blackburn recalls: "Carol had done this experiment, and we stood, just in the lab, and I remember sort of standing there, and she had this -- we call it a gel. It's an autoradiogram, because there was trace amounts of radioactivity that were used to develop an image of the separated DNA products of what turned out to be the telomerase enzyme reaction. I remember looking at it and just thinking, ‘Ah! This could be very big. This looks just right.’ It had a pattern to it. There was a regularity to it. There was something that was not just sort of garbage there, and that was really kind of coming through, even though we look back at it now, we'd say, technically, there was this, that and the other, but it was a pattern shining through, and it just had this sort of sense, ‘Ah! There's something real here.’ "

For this work, she was awarded the 2009 Nobel Prize in Physiology or Medicine, sharing it with Carol W. Greider and Jack W. Szostak. She also worked in medical ethics, and was controversially dismissed from the President's Council on Bioethics.

Elizabeth Blackburn was born in Australia and went on to gain her M.Sc. at the University of Melbourne. She later studied at Cambridge and Yale and is currently Professor of Biology and Physiology at the University of California. In 1998 she was the winner of The Australia Prize for her work in molecular genetics.

In October 2009 she became Australia's first female Nobel Prize Winner.

Australian of the Year 2006
Professor Ian Frazer
Clinical Immunologist

Professor Ian Frazer founded and leads the University of Queensland's Centre for Immunology and cancer research. For 20 years he has been researching the link between papilloma viruses and cancer, seeking ways to treat these viruses in order to reduce the incidence of cancer. Ian has now developed vaccines to prevent and to treat cervical cancer, which affects 500,000 women each year. A vaccine based on his research has shown in worldwide trials to prevent papilloma virus infection and reduce Pap smear abnormalities by 90%. It has the potential to virtually eradicate cervical cancer within a generation.

CANCER expert Prof Ian Frazer is on the verge of a major breakthrough in skin cancer - he hopes to develop a vaccine within a year.
The former Australian of the Year and creator of the world's first cervical cancer vaccine, Gardasil, has developed a world-first strategy to combat the insidious disease that affects two out of three Australians.

"In my lifetime we should be able to remove the threat of skin cancer from the next generation," the 57-year-old immunology professor said. "The smoking gun evidence is there is a virus or viruses that cause it." Prof Frazer believes people can "catch" cancer from a virus. He proved his theory by identifying the human papilloma virus (HPV) as the cause of cervical cancer and then developing a vaccine against the virus to rid the female population of the cancer. Now he is using a similar tactic to try to combat skin cancer, including malignant melanomas. "This group of cancers caused by virus infection present a great opportunity because the idea of vaccinating to prevent a cancer is enormously appealing," he said. Prof Frazer said the problem was two-fold.

"Genetics and variations in people's immune systems may expose some people to greater risk of skin cancer after sun exposure," he said. "If you take away the body's defence systems, skin cancer becomes more common." His theory is that some viruses - particularly the wart virus or HPV - are embedded in the layers of the skin, which then pose a skin cancer risk for people with damaged immune systems. "The technology now exists for me to test my theory," Prof Frazer said. "It is very powerful but also very expensive. "Using this tool, we will go hunting for the fingerprints of the virus or viruses present." Prof Frazer's team will input all the sequenced genetic information on skin cancer - which will take six months - and then get an answer. "We will know if a virus causes skin cancer and what virus it is," he said.

Read more:

Key Facts
• Ten Nobel Prizes have been awarded to Australians
• Of the 10 prizes, nine were for science or medicine and one was for literature
• Two other Australians have won Nobel Prizes but conducted their work overseas
• Another four Nobel laureates have strong links to Australia.

And they said it couldn’t be done…

Number 10 may be another Australian medical researcher.

It could be Cluster Headache that benefits from another Australian's pioneering medical research efforts.

I wish all people with Cluster Headache well with their own journeys.

If history is any indication - Keep on hoping, we may find relief sooner than anticipated.

This is my last post here for a while.

Cheers, Ben.

Posted in AV411 and Glial cells in Headache, thoughts anyone? on 30 Nov, 2011 - 6:38 pm

Sorry the 3rd link was a "preview only" PDF. The document needs to be purchased to be read in its entirety. Here is an article I found, much easier to read, though not specifically mentioning Headache conditions, other info at Avigen (on AV411) outlines plans to assess the drug for use in Headache conditions.

There are a lot of links on this webpage, it is a good starting point for researching this possible next CH treatment option.

“Listening” and “talking” to neurons: Implications of immune activation for pain control and increasing the efficacy of opioids.

It is recently become clear that activated immune cells and immune-like glial cells can dramatically alter neuronal function. By increasing neuronal excitability, these non-neuronal cells are now implicated in the creation and maintenance of pathological pain, such as occurs in response to peripheral nerve injury. Such effects are exerted at multiple sites along the pain pathway, including at peripheral nerves, dorsal root ganglia, and spinal cord. In addition, activated glial cells are now recognized as disrupting the pain suppressive effects of opioid drugs and contributing to opioid tolerance and opioid dependence/withdrawal. While this review focuses on regulation of pain and opioid actions, such immune-neuronal interactions are broad in their implications. Such changes in neuronal function would be expected to occur wherever immune-derived substances come in close contact with neurons.


Glial Neurobiology book:

A list of books. Other possible starting points for pain research:[

Cheers, Ben.

Posted in Untitled on 29 Nov, 2011 - 2:58 pm

Hi to all,

A quote lifted directly from my medical file as written by Professor Paul Rolan:

5 June 2007

"Ben suffers from the unusual condition of chronic cluster headache. This is a chronic condition of recurrent excruciatingly severe episodes of Headache. Pain is far in excess of that experienced typically by patients with migraine, and is incapacitating. Usually such conditions are managed by a mixture of prophylactic and acute medication. Ben has had trials of Methysergide, Verapamil, Lithium, Sumatriptan, Oxygen, and Ergotamine, all have either been ineffective or not tolerated.

Although most of us are familiar with the term headache, IT DOES NOT CONVEY THE EXTREME INTENSITY OF PAIN ASSOCIATED WITH CLUSTER HEADACHE. Given the high frequency and unpredictable nature of his attacks, I see him for at least the medium term to be unemployable due to the frequent and incapacitating nature of these attacks. The only treatment option we have left is a destructive surgery which is not guaranteed to work and has a significant risk of actually making the problem worse. This is not to be recommeneded at this stage."

Paul Rolan MD FRACP
Professor of Clinical Pharmacology
School of Medical sciences
The University of Adelaide
South Australia 5005


Can't anyone have the vision or foresight to see that the next generation of "sufferers" will be just that if we do not affect generational change in how Cluster Headache is perceived and thus treated? It will become a self fulfilling prophecy - suffering.

Think of your children tolerating CH in 50 years time if nobody does anything. This is why I floated the idea in the first place, albeit ambitious, altruistic and seemingly ignorant of me. ( For the benefit of readers - Yes, it was my idea, I take responsibility for it. To take the heat off Matt, he hardly needs it right now...)

Change has to start somewhere, why not here?

I am going to get torched over this post, but I say it with full conviction.
It appears that some of the world's best medical scientists agree...

"Cephalgia" appears to be a term already well established by the IHS and is recognised worldwide by Doctors and Chemists alike. It appears my "name change" idea has not been well received. But I will press on to help change public perception and raise awareness of CH, with or without a name change.

People thought Galileo was raving mad, he was punished for his ideas. Now, with the benefit of hindsight, he is considered a pioneer.
By no means am I comparing myself to any of the great pioneers or thinkers, but it will take some vision and determination from someone to see that CH becomes easier to treat and to live with in our lifetimes or those of our children.

“A mind is like a parachute. It doesn't work if it is not open.”
― Frank Zappa.

Cheers, Ben.

Posted in Hot Peppers: A Natural Treatment for Cluster Headaches on 26 Nov, 2011 - 12:00 pm

Capsaicin is the ingredient of interest, check out these links![

Chers, Ben.

Posted in dehydration on 26 Nov, 2011 - 10:56 am

I think the stuff on your kettle element is calcification, water contains calcium which can build up anywhere water sits or runs for a long time. 2 tablespoons of vinegar in a full kettle boiled will clean the thing like brand new. Vinegar ain't dangerous, just have to boil the kettle 3 times with fresh water to get rid of vinegar taste after...

I am no chemist mate, but I know the vinegar trick works just fine.
Watch out! It boils sooner, at like 80 or 90 degrees C and turns into a fouintain of hot water!
Best to switch off kettle manually when doing this.

Be careful!!!!!!!


Posted in AV411 and Glial cells in Headache, thoughts anyone? on 24 Nov, 2011 - 8:57 pm

Hi to all,
Whilst we all speculate as to what may be triggering our respective CH attacks, most of us are
convinced that there is no "one size fits all" drug treatment for CH.
We may be closer than we realise, I am not entirely sure.
Does anyone out there know anything about the drug AV411, or can a more experienced person decipher whether or not this is of signifigance to CHers?

It is not light reading, but I suspect we are on the cusp of the next generation of CH drugs, possibly borrowed from other studies on Neuropathc pain. I am no Doctor and I do find this confusing. Here are some bits and pieces I found outlining the subject.
I am waiting for the day someone says "Take 2 of these" and I will see if it works...
Thoughts anyone?

Cheers, Ben.

Glial cell: A supportive cell in the central nervous system -- the brain and spinal cord. Glial cells do not conduct electrical impulses (as opposed to neurons, which do). The glial cells surround neurons and provide support for them and insulation between them. Glial cells are capable of extensive signaling in response to a diversity of stimuli. Bidirectional communication exists between glial cells and neurons, and between glial cells and vascular cells.

Glial cells are the most abundant cell types in the central nervous system. There are three types of glial cells: astrocytes, oligodendrocytes, and microglia. Astrocytes are concerned with neurotransmission and neuronal metabolism. Oligodendrocytes are involved in the production of myelin, the insulating material around neurons.. And microglia are part of the immune system.


"Of all the patients that I see with chronic headache, medication overuse headache represents the greatest combination of frequency and burden. We have few evidence-based treatments for this condition, and unlike ibudilast, most of the drugs I would try have significant cognitive and sedative adverse effects. This novel approach being tested in the trial applies current state of the art knowledge of the role of glia in chronic pain to address an unmet medical need. A key part of obtaining the necessary ethical and regulatory clearances has been critical information supplied by MediciNova," said Prof. Rolan. "Participation in this clinical trial is a natural follow-on of prior leading-edge collaborative preclinical and clinical research with Prof. Rolan and University of Adelaide colleagues for new pain utilities for ibudilast," noted Kirk Johnson, Ph.D., Chief Scientific Officer, MediciNova.

The Phase 2 study is double-blind involving at least 40 patients, randomized 1:1 to placebo or 80 mg/day ibudilast (as the delayed-release Pinatos(R) capsule format of MN-166) for 8 weeks. The study will include headache surveys, quantitative sensory testing (QST), and plasma and blood cell biomarkers. Headache endpoints will additionally be assessed at 6 months post-therapy onset.


Glial Modulators and Other Potential Treatment Targets
The glial activator AV411 (Avigen, Inc; Alameda, California) has ibudilast as its active ingredient and “looks like an incredible type of new medication,” according to Dr. Rapoport. “It’s only in phase II trials, but it does everything you’d want it to do,” he continued. “It suppresses the production of proinflammatory cytokines, like interleukin-1 beta, tumor necrosis factor-alpha, and interleukin-6, while enhancing the production of anti-inflammatory cytokine interleukin-10.” Ibudilast is also believed to up-regulate the release of neurotrophic factors and suppress neuropathic pain. “We know now that the glial cells are extremely important, and it looks like we’re going to be able to affect them,” said Dr. Rapoport.


Posted in dehydration on 24 Nov, 2011 - 8:17 pm

Hi Les,
Lived on many remote rainwater supplies. Watch out for Zinc (or other nasties) from the old Zinc galvanised tin rooves and raintanks. Copper from old pipes (Check out Wilson's disease, I was tested for this by a Neuro during CH diagnosis because of my left sided CH tremor/cluster tic syndrome). Lead paint on roof tiles etc etc.
Impurities are not so much a problem these days with plastic tanks etc, but back in the 70s and 80s, I reckon it made my Mum go slightly mad after 15 years of drinking high Zinc concentrations. I presume you can't measure Zinc content in water at home, unless you are a chemist... you need to take a sample to a lab. Good to see if you can feed it through a Reverse Osmosis filter to remove any impurities, terribly inconvenient and wasteful I know, but worth the results. (Less than 10 PPM - (parts per million) of impurites detectable after RO filtering, we now get around 600 PPM of TDS - total dissolved salts/impurities out of our tap water in Adelaide...) You can get your rainwater tested in a lab pretty cheap these days. I used to help make wine in WA as a cellarhand, we had a lot of water quality issues show up in lab results with our varying supplies from cellar to cellar. Yet another variable I had to eliminate in order to treat my CH.
I am on the spring water permanently now, Adelaide water is virtually sand, chlorine and flouride coming out of the tap!

Cheers, Ben.

Posted in FAT on 24 Nov, 2011 - 8:00 pm

Hi Les,

E249, E250 - Nitrates mate. Found in processed and preserved meat products like suasages, mettwurst, fritz etc. We could use Nitrates in Pain management Unit to trigger a CH in me. Nitrates act as a vasodilator. Vasodilation is the enemy, this is the beginning of CH attack.
I plan to use a heart drug (A nitrate called Anginen or Arginen?, I forget the name, it's for Angina and acts as a Vasodilator) it will bring on a CH apparently in order to trigger my CH so I can test the efficacy of my electrical nerve stimulator implant when I eventually get to trial the thing...
Of course Vasodilation is the enemy, so steering clear of nitrates is the way to go if you have identified it as a trigger. It is probably a good idea for you to identify all the codes (EG: 220 preservative etc) that are in foods you eat that set your CH off.

If you identify that they are triggers and slowly change lifestyle patterns to correct the situation (e.g; no more sausages, unless you get fresh steak ones (no preservatives or additives) from the butcher like I do!) I have to steer clear of flavour enhancers (E621, E635) found in chicken crimpy biscuits or arnotts shapes, if I am in a bout, it does me no good. I have no idea why.
There is some debate about fat and CH, but I doubt this is the problem in this case.
Also gravy, if it is Gravox or similar, the thickening agent or other ingredients and additives may be something to avoid. I recommend making gravy with the pan juices, a bit of flour or maybe cornflour to thicken it up, I avoid Gravox with it's thickening agents.
Going back to less processed foods is the way to go. I have not had much success here, I am overweight and after 60+ drug trials, pretty hammered by it all. I can barely think what to eat next cause I have a Prednisolone induced stomach ulcer right now.
This isn't really my area, many others know far more than I about diet, food additives and CH. But having a look at food additives is probably a good idea in your case mate.

From a wiki article:

Known triggers

Cluster headache patients report the following suspected triggers:

Alcohol, especially red wine and wheat beer (contains histamin)
Monosodium glutamate aka MSG which is a flavour enhancer found in almost any industrially processed food (glutamic acid). In natural form to be found in cheese and tomatoes. Chinese food and other Asian dishes are commonly seasoned with glutamic acid, as are canned soups.
Potassium nitrate (E249) and Sodium nitrate (E250), mainly found in sausages and other processed meat.

Here is a starting point for research anyway..

Cheers, Ben.

Posted in why water only works on some on 24 Nov, 2011 - 1:05 pm

That book you mentioned on trigger point therapy in your bio is available here for download:

Or from these mirror sites:

Cheers, Ben.

Posted in dehydration on 23 Nov, 2011 - 5:32 pm

Just an idea,
I know I have to keep at least a litre or 2 of water going into me every day.
I forget how much of the human brain is made up of water, something like 80%?
I think it shrinks or even weighs less if you are dehydrated, can't remember - too many doumentaries ago for my brain to remember... I do remember hearing somewhere that by the time you are feeling thirst, you are already very dehydrated. I drink before I get thirsty, in small sips, all day. Water is one of the best CH preventives or rather CH minimisers that I have. There are so many factors at play here, PH, salinity, vitamin and mineral intake, the list is endless as is the speculation when it comes to CH. But I am sure most CHers don't get enough water, I agree.

Sorry, I have carpel tunnel too bad to back up my unresearched claims here.
Just off the top of my head info mate.
Can't type anymore! (some of you got your wish!)

Take care.
Cheers, Ben.

Posted in SOMETHING IN THE AIR ? on 23 Nov, 2011 - 5:13 pm

We are exactly one month out from the equinox, give or take a day.
Our bodies and respective Hypothalamus' know that the daylight hours here in Australia are getting longer. The dates are on this wiki page:
You can spot it in nature everywhere. I don't know about anyone else, but if I were to speculate the following about my CH trigger (in no specific order):

A: A form of Hypothalamic dysfunction
B: That Circadian Rhythm played a role
C: That day/night cycles played a role

I would be very suspicious that the whole Circadian Rhythm, day/night cycle theory is at play once again. Not to be confused with all the sinus and /or histamine headaches this time of year due to flowering bushes, grasses and high counts of airborne pollens. (Hello to all the Migraneurs out there, my sympathies for this time of year...)
Possibly, there is some relevant or maybe even interesting stuff written in the Circadian Solstice thread.
When a whole bunch of CHers statistically show up in a short space of time, like you have reported Kim, I try to see if there is any link between reported symptoms and day/night cycles. We had some cool ideas and feedback coming in from readers on that thread, perhaps it is that time of year again where people will start reporting more CH.
Only one way to find out! Gather more stats! Check out the thread mate, it could fire up again having just passed another equinox. Also check out SAD - seasonal affective disorder, some speculation there that we may get some treatment overlap from this condition that may help those of us who feel that day/night cycles and Hypothalamic function are the suspected culprits.

Just my take on something being in the air...

Cheers, Ben.

Posted in Strong drugs without the addiction on 21 Nov, 2011 - 9:18 pm

Gee, the man is busy. Looks like Capsaicin may be used in other Neuropathic pain conditions too smile , I know Sciatica is a different condition entirely (ouch...) but I will have to ask the Prof if this has any merit in CH.

Posted in Strong drugs without the addiction on 21 Nov, 2011 - 9:11 pm

Hi to all,
For those of us wrestling with CH, narcotic or opiod based medications and addiction issues there is some good news on the horizon. For those of you who are not familiar with the work of my CH specialist Professor of Clinical Pharmacology Paul Rolan, here is an article outlining some exciting pain management research going on in South Australia. Whilst many of us fight basic ignorance at GP level, it is nice to know that our best and brightest intellectuals are thinking of ways to solve and better manage chronic pain conditions, including cluster headache.


Adelaidean - News from the University of Adelaide - 2011

Strong drugs without the addiction


Two University of Adelaide pharmacologists working with one the world's leading neuroscientists have helped pave the way for the development of new pain-killing drugs that are not addictive.

Professor of Clinical Pharmacology at the University of Adelaide Paul Rolan and postdoctoral fellow Dr Mark Hutchinson are part of a combined US and Australian research team that has made a breakthrough in revealing how opioid drugs such as morphine both relieve pain and also cause addiction.

The Adelaide scientists and senior colleagues at the University of Colorado, including world glia and pain expert Dr Linda Watkins, have isolated in animal models the effect that morphine has on the brain's immune cells, known as glia, and also on nerve cells (neurons).

Glial cells heighten nerve pain such as sciatica by exciting the neurons that transmit pain signals. While morphine deadens pain by acting at nerve synapses, it also activates glial cells, worsening the drug's side effects, such as drowsiness, tolerance and addiction.

The scientists tested a new drug called AV411 that blocks morphine's effects on glia but not on neurons, resulting in effective pain relief without the side effects of addiction. AV411 is being developed by Avigen Inc., a Californian biopharmaceutical company.

Vice President of Research & Development at Avigen Dr Kirk Johnson said the company was working in collaboration with Dr Hutchinson, Dr Watkins and Professor Rolan.

"Currently, AV411 is in clinical trials at the Royal Adelaide Hospital for neuropathic pain and we look forward to exploring this molecule in opioid withdrawal," Dr Johnson said.

"Doctors prescribe morphine for pain relief but opioids come with the potential for addiction or abuse," Dr Hutchinson said.

"Our tests show that by blocking morphine's effects on glial cells, it stops cravings for the drug."

These pre-clinical findings were reported last month at the annual meeting of the Society for Neuro-science, the world's largest organisation of scientists devoted to the study of the brain. The prestigious international journal Science also published the findings last month.

The Director of the National Institute on Drug Abuse in the United States, Dr Nora Volkow, said the research helped to "pave the way toward developing new, potent, non-addictive medications".

Dr Hutchinson graduated with a Bachelor of Science degree with First Class Honours from the University of Adelaide in 1999, majoring in microbiology, immunology and pharmacology. In 2005 he was awarded an American-Australian Association Fellowship and has been working with Dr Watkins in Colorado for the past three years.

He is now a NHMRC CJ Martin Postdoctoral Fellow, which will enable him to return to the University of Adelaide to continue working with his colleagues in the Discipline of Pharmacology.

In November, Professor Rolan addressed the 10th International Conference on the Mechanisms and Treatment of Neuropathic Pain held in Salt Lake City, Utah. He told delegates that summary data showed that AV411 was "a promising non-opioid clinical candidate for chronic neuropathic pain".

The other US scientists involved in the research include Dr Steven Maier from the Department of Psychology and Centre for Neuroscience at the University of Colorado and postdoctoral fellow Sondra Blond.

Story by Candy Gibson.[/

Cheers, Ben.

Posted in Hello im emily :D on 21 Nov, 2011 - 12:57 pm

" i intend to teach my nursing class about CH's to try and help "prevent" future sufferers from the ridicule and embarassment of an ED visit.... i think it should be added to the study load of nursing and anyone else who might come to have to treat this condition.."

Excellent news for everyone!
Fantastic to see someone who can help to affect generational change in how CH is perceived.
I hope there are more people like you out there, it would help us all in the future.

Good luck with it.
Cheers, Ben.

Posted in Merck info on CH, includes podcast. on 21 Nov, 2011 - 12:47 pm

Hi to all,
Just found an interesting list of CH medications on this site.
There was also a link to a 7 minute podcast where a specialist is interviewed about headache conditions. Interesting to listen to... Sorry about the free Merck plug!

Cheers, Ben.

Posted in Hello im emily :D on 20 Nov, 2011 - 11:42 pm

Hi Emily,
One of the moderators here "Barry Coles" knows a thing or 2 about O2 use in CH.
I am sure a few people will chime in soon with some ideas, hints and tips on correct O2 use. Don't let the Emergency room staff get the better of you. Most GPs have a very limited knowledge of Cluster Headache, ER staff have none, in my experience. ER staff are not trained to deal with CH, so they can be dismissive and terribly counterproductive at times.
ER is not the place for CH diagnoses or even treatment, if you don't have a diagnosis.
The term "Headache" does not convey the severity of the condition and it is lost on most ER staff. Presenting in front of a specialist is the way to go. If your GP is on board, ask for a referral to a specialist in a Neurology department of a public hospital, they could hardly knock you back. given the reported symptoms.

Please don't feel overwhelmed with information as the responses start to show up, I know how it felt when I first turned up on the site - information overload! People will have many questions, but we are here to help.

Good luck with the O2, I hope it works for you.

Cheers, Ben.

Posted in TESTOSTERONE on 20 Nov, 2011 - 11:31 pm

Hi Kim, I think I got that link up. Can't locate the full PDF file yet, but there's another article citing Stillman's work here that may be relevant too:

Cheers, Ben.

Posted in Capsaicin anyone? on 19 Nov, 2011 - 7:49 pm

Hi to all,
Just wondering if anyone has tried this. I acidentally ate a seriously hot chilli when my head was feeling like I was about to have an attack (It was in some food I bought).
My head lit up like a match, it was really hot. About 20 minutes later after profuse sweating and much water my head felt kind of clearer. I may have dodged an attack by aborting it with the chili. Don't know what merit this has, if any. But I thought it might be an idea.

I have checked out the MSDS materials data on this stuff, for CH efficacy either we will be shooting something up our noses that is so strong it should remain purely a class of weapon, or maybe not.
The other "commercial" variety doesn't get good raves on the other CH boards from a glance, it may be too weak to achieve anything.
Anyone had any experiences with it?

I don't think I could handle this mid CH attack...

Cheers, Ben.

Posted in No sleep = no pain??? And what are the jumpy legs? on 16 Nov, 2011 - 9:23 pm

Excellent that you are getting an MRI, more GPs should be scanning patients to rule out other abnormalities before attempting CH diagnoses. I bang on about this endlessly... CH should be diagnosed by a Neurologist at the very least. Because you can't see or measure a CH attack, it can't be easily quantified or proven to exist. There are no confirmatory tests for CH. You need a specialist who has seen a CHer or 3 before. However, the International Headache Society provide clear diagnostic criteria for CH. If you work closely with a specialist who knows CH, you may just be in luck, you may have a different headache condition that is quite treatable.
There are many headaches that fit the CH criteria when it comes to severity, frequency and duration of attacks. But some headache conditions can be ruled in or out simply by running a few tests and simple drug trials. (For example: Indocid responsive Headaches. They can mimic some CH symptoms, they can also be confirmed/diagnosed by the use/withdrawal of the drug Indocid).
The real CH specialists have a few tricks up their sleeves...

Check out the IHS tab on the left for diagnostic criteria, it is a web-based application where you can search the IHS database for your type of headache by symptoms or any other search term.

Yes, I have a dry sense of humour, it gets me into trouble on here on a regular basis, but what you gonna do? If I didn't have a laugh about CH I would not be here. Basically in short, I have had a headache for 30 years, it is just the intensity that varies. I am over it, I just finished making an acoustic guitar and I have been playing until it hurts, then play some more. I still get stuff done despite my CH. Bugger having them get in the way of everything! Next, I am off to build my contraption if I can get hold of the bits and pieces.
Maybe I can use it to communicate with aliens to see if they have a CH cure...

Cheers, Ben.

Posted in Prednisone on 16 Nov, 2011 - 8:53 pm

Hi Guys,
Good to see you are getting relief from CH no matter where you find it.
No one else has stuck their neck out yet, so I will put up some info as an experienced Cortisone user (actually now a non-user).
Pred users have to be super vigilant when using this drug long-term or repeatedly for CH. I have weighed in on both sides of the Pred argument. I agree it has its place in acute CH intervention, it has saved lives by rapidly stabilising patients with CH - I am one of them. It has also wrecked lives through over-prescription, overuse and improper monitoring of tapering off the drug in patients. I have used Pred on many occasions to knock out CH, 50mg does me just nicely. But I can live without the extra 30 Kgs, duodenal stomach ulcer, constant burning gut, roid rage, crumbling nails, thinning hair/skin, loss of bone density, adrenal gland dysfunction etc. etc. This Pred induced situation now prevents me from using my number 1 abortive drug - Soluble Aspirin, the stomach ulcers tend not to like Aspirin, or Imigran for that matter.
The drugs I now have to take for the ulcer (Nexium 40mg) make me feel as sick as a dog and effect uptake of other drugs in me, despite what the info sheet says. (Nexium drastically reduces stomach acid production, leaving other medication to just sit there, ineffective).
Pred worked for a while and got me out of some tight spots, but now I am in a real predicament. The next major CH bout to hit me, I am screwed.
I can't take my Aspirin or Imigran. I can't take Pred again or I will bleed out from the intestine. The only thing I can do is sit out the CH, or hit it with an Imigran injection, that is all I have left to hit CH with, courtesy Pred use.
Looks like Lidocaine infusion or the like will be my only option next time things go south.

Pred - great when its working, lethal when it ain't anymore.
Don't take my word for it, there are many stories about Cortisone/Pred on this site and absolute slabs of info on the drug available. It is a well understood drug.
I am not sittin on the fence here, it has its place, just not in me!
I would rather eat StPeter's toenail clippings than go there ever again.

Cheers, Ben.

Posted in Untitled on 15 Nov, 2011 - 2:16 pm

Hi to all,
Access to affordable mental health services is easier than you think by the looks of this info. Haven't tried this myself, but I hear you can get 10 appointments with a Psychologist bulk-billed when referred by your GP. Here is the lowdown on getting hold of a Psychologist through your GP at no cost to you.

I know a lot of people are put off visiting any mental health services due to the potentially very costly services. Chronic pain and the depression it causes should be enough to get any CHer to meet the necessary eligibility criteria for treatment. You can get some free help with this through Medicare if you need it.

Latest info lifted from Australian Psychological Society's webpage - from the fact sheet:

From 1 November 2011, eligible people can receive:

- Up to 10 individual services in a calendar year. Your referring doctor will assess your progress after the first six sessions.
- Up to 10 group therapy services in a calendar year where such services are available and seen as appropriate by your referring doctor and the psychologist.

Some info on getting hold of a Psychiatrist, I have access to one through a Pain Unit in a public hospital if required:

(Not aimed at you Matt, just the readers! But keep your head up anyway mate!)

For CHers, I still recommend seeing a Pain Management Unit too, they offer multidisciplinary medical care. This usually includes access to Psychologists and Psychiatrists that are more tuned into chronic pain conditions, particularly CH itself. They can also prescribe medication on the spot, so you may go home from an appointment with a Psychiatrist with a script in hand for a new medication. Sometimes CH options are wherever you find them, I know Psychiatrists have helped me with my CH meds before.
They are great if they understand pain!

Cheers, Ben.

Posted in Untitled on 15 Nov, 2011 - 6:45 am

Well, I can knock one up pretty easy, I used to build satellite electronics back when I could see! I still have my electronics assembly equipment in storage.
I shall find my magnification and get to work at the test bench then.
I smell solder in my future...
If I report any CH successes, I will let the site know.
Somehow I doubt it, but from my research, the nerve stimulator implant has little more merit medically or technically than this unit does and that worked.
And I am still lined up for one...
(Folks, don't try this at home. I am a qualified and licensed technician driven slightly mad by CH!).
If anyone is SO curious as to want one built, let me at least prototype and MTR (Manufacturing Trial Run) one first before the requests to build them start coming in!
I read somewhere that Roger was an electronics buff, any thoughts Roger?

Cheers, Ben.

Posted in No sleep = no pain??? And what are the jumpy legs? on 15 Nov, 2011 - 6:27 am

There have been some studies and conjecture about the prevalence of RLS (Restless Leg Syndrome) in CH patients. I know a few people report it in CH and I don't dismiss their accounts at all. I am just not one of them, I wish it were only my legs that were restless, the whole body goes beserk! My tremor used to settle down whenever we used an Epilepsy drug for CH, no coincidence I think...

Here is a recent thread we had going on similar topics re: RLS etc:

I do not have RLS during my CH, more like Grand Mal Epilepsy almost exclusively down my left side of body (CH is on the right of my brain). I just about need an 8 point racing harness for a CH! I had that diagnosed by a Neurologist as a "Benign Tremor", but it always starts before CH and never really occurs outside of CH. I am convinced it is a secondary condition like "Cluster Tic Syndome":

A quote from the handbook of clinical Neurology 2011 #97:
In this syndrome attacks of cluster headache and of trigeminal neuralgia occur in the same patient. Usually the attacks occur at different times but sometimes they occur together. Treatment needs to be specific for each condition (cluster headache and trigeminal neuralgia), even when both occur together (Klimek, 1987)."


A recent study on RLS in CH patients:


Our data indicate no probable relationship between CH and RLS. However, since both conditions have a circadian rhythm and are associated with altered melatonin secretion, we conjecture that reduced nocturnal melatonin in CH likely allows sustained dopaminergic activity which could be protective against RLS in CH patients.

To me it sounds like you suffer the same thing a lot of us do - a disorder of the hypothalamus. This part of the brain controls bodyclock, body temperature and has many other complex relationships to the Central Nervous System and how it behaves.
There seem to be complex relationships between secretion of the sleep hormone Melatonin just as we go to sleep and the way the Hypothalamus responds to this, especially in us CHers.
It's mechanisms are not yet fully understood, but the Hypothalamus has been implicated as a part of a series of events that leads us possibly to CH attacks. Various scanning techniques have shown Hypothalamus function to be different in CH patients (during attack) when compared to the general population not suffering CH. Research is ongoing and I update the site with new links whenever I find a new development.
It is all a bit complicated, but I occasionally check out what Dr Goadsby is up to.
I believe he was involved in some of the new imaging work done (They watched the Hypothalamus behaviour in real time on a scan during CH attack and monitored pathology etc, I will see if I can find the study...)

A lot of us have trouble sleeping. My specialist sometimes emphasies the utmost importance of routine in life, in order to establish regular sleep patterns or Circadian Rhythms. Sometimes I am prescribed a 2 week supply of Temazepam (sleeping pills) from my GP just to reset the bodyclock. It never stopped the headaches outright, but made them easier to deal with and possibly reduced the number of attacks I got.
Maybe even wound up a bout early once or twice. There is merit in a good night's sleep!
I know one thing for sure, I wasn't going to reduce attacks in the absence of routine.
This is what works for me after much trial and error...
Controlling the body clock is difficult and there is much to be read on the subject.
There are a lot of posts on the site about the Hypothalamus, Ciradian Rhythm and posts from users outlining their experiences and what worked for them.
I think no 2 are alike on here, but we all find our sleep patterns that help with CH eventually!

Oh, man my head hurts, gotta go...
Remember, I am not a doctor, just my take on it, unedited, unfinished, urrgghh
Cheers, Ben.

Posted in Untitled on 14 Nov, 2011 - 8:06 pm

Anyone think it would be worth a try?
Like the TENS machines?

Posted in How Headache Tree Causes Cluster Headache and Migraine on 14 Nov, 2011 - 7:58 pm

I think CGRP receptor antagonists will be spun out of this.
I am not clear on which stage of development we are at with CGRP receptor antagonists.
I for one can't wait, they offer the hope of a non-vasoconstrictive, preventive drug taken once daily that prevents CH, we are eagerly awaiting it's arrival here in Aus.

It ain't light reading, but this is the drug I am waiting to get my hands on...

Cheers, Ben.

Posted in How Headache Tree Causes Cluster Headache and Migraine on 14 Nov, 2011 - 4:51 pm

How Headache Tree Causes Cluster Headache and Migraine
Posted on 07. Nov, 2011 by Admin in medicine, biology

Researchers have now identified the mechanism by which the plant California laurel, also known as headache tree, causes headache and migraine. They discovered that headache is caused when a bioactive compound released from the leaves of this plant triggers a cascade of chemical events in trigeminal nerves around head arteries.

California laurel (Umbellularia californica, U. californica), a shrub indigenous to Northern California, is known by a host of common names, such as pepperwood, spice tree and cinnamon bush, because of its strong aromatic properties and its alleged headache-inducing properties. Vapor from the aromatic leaves causes sinus irritation, sneezing and headache.
Umbellularia californica headache treeUmbellularia californica, the headache tree

Two years ago, Dr. Geppetti and coworkers, at the University of Florence in Italy, described the case of a gardener who suffered cluster headache for 20 years. Ten years after his last cluster headache attack, in three different occasions while pruning a California laurel he had a new cluster headache-like attack. It was hypothesized that one or more molecules from the plant targeting the trigeminovascular system may cause migraine or cluster headache attacks.

The leaves of U. californica contain, as a major volatile constituent, monoterpene ketone umbellulone, a compound that, when administered to laboratory animals, produces irritating effects. Recently, the laboratory of Dr. Geppetti found that umbellulone specifically targets the transient receptor potential ankyrin 1 (TRPA1), an ion channel activated by mustard oil, cinnamon, wasabi and a series of endogenous reactive molecules, and expressed in a subset of trigeminal neurons which also express proinflammatory and vasodilatory neuropeptides.

Umbellulone target TRPA1 trigeminal neuron mechanism:
Umbellulone, by targeting TRPA1 on trigeminal neurons, causes neurogenic and CGRP-dependent vasodilatation. Image provided to by Dr Geppetti.

In particular, one of these neuropeptides, the calcitonin gene-related peptide (CGRP), released from trigeminal terminals around intra and extracranial arteries, produces profound ‘neurogenic’ dilatation of these vessels. CGRP receptor blockade has been reported to ameliorate migraine attacks, probably by blocking the arterial vasodilatation produced by CGRP, and CGRP antagonists are considered novel medicines for migraine and cluster headache patients. The observation that umbellulone, by targeting TRPA1 on trigeminal neurons, causes neurogenic and CGRP-dependent vasodilatation, suggests this pathway as the underlying mechanism of the headache caused by U. californica. This conclusion is in line with another observation from Dr. Geppetti’s laboratory, which is that ethanol activates the capsaicin ‘receptor’ (TRPV1) (Trevisani et al. , 2002). TRPV1, which is co-expressed with TRPA1 within the same trigeminal neurons, releases CGRP and vasodilatation in meningeal and extracranial vessels (Nicoletti et al. , 2008).

The mechanism identified in this study may explain why alcoholic beverages induce migraine and cluster headache attacks. Dr. Geppetti’s comment on this novel information is: “The mechanism, which eventually results in the throbbing and severe pain of migraine and cluster headache, still remains a mystery. However, we now know that the trigeminovascular system and CGRP release from trigeminal perivascular terminals and the resulting arterial vasodilatation play a major role in these conditions. Our previous and present findings contribute to the completion of the puzzle regarding the plethora of stimuli that trigger headache by discovering specific molecular targets that well-known headache triggers hit to activate neurogenic vasodilatation.”
Science Story Reference:

Posted in Nerve stimulation or Deep brain stimulation on 14 Nov, 2011 - 4:47 pm

Gamma Knife Surgery.

Here is the next option if my implant fails:

Possibly a viable but undesirable procedure, but things will be getting real desperate if the implant is not successful.

Cheerful stuff...

Cheers, Ben.

Posted in A new book on Headache Conditions. on 14 Nov, 2011 - 7:16 am!download|920tl|414223621|Mechanism_and_Management_of_Headache__7th_Edition.pdf|5759|R~354CDB007AEEDCF0548062EEAF94495E|0|0

Sorry if this "link" runs 4 miles off screen to the right (What's goin on Roger?").
However, if you highlight it, cut and paste it into your web-browser, you will find yourself at the site!
Worth a read. Especially for the newbies.

Cheers, Ben.

Posted in A Cure for Cluster headaches!!! on 12 Nov, 2011 - 7:32 pm

Hi Kim,
Gimme a few days, I will see if I can dig up "Cephalgia" from 2010. Think I have it somewhere...
In the meantime, here are some other interesting books/documents I found on CH
and related to have a look at:
(Just follow the download links/instructions.)
Any problems Kim, PM me and I can email stacks of literature to you, no problem.

Sorry, you will have to copy and paste this one, the link came out strange on this site
for some reason, this seems to be Goadsby's latest book:!download|920tl|414223621|Mechanism_and_Management_of_Headache__7th_Edition.pdf|5759|R~354CDB007AEEDCF0548062EEAF94495E|0|0

Cheers, Ben.

Posted in Circadian Solstice??? on 11 Nov, 2011 - 11:25 pm

Some more light reading on Circadian Rhythm Disorders from the DSM IV, interesting reading for those with CH and latitude changes...

307.45 Circadian Rhythm Sleep Disorder
(formerly Sleep-Wake Schedule Disorder)

Diagnostic Features
The essential feature of Circadian Rhythm Sleep Disorder is a persistent or recurrent pattern of sleep disruption that results from a mismatch between the individual's endogenous circadian sleep-wake system on the one hand, and exogenous demands regarding the timing and duration of sleep on the other (Criterion A). In contrast to other primary Sleep Disorders, Circadian Rhythm Sleep Disorder does not result from the mechanisms generating sleep and wakefulness per se. As a result of this circadian mismatch, individuals with this disorder may complain of insomnia at certain times during the day and excessive sleepiness at other times, with resulting impairment in social, occupational, or other important areas of functioning or marked subjective distress (Criterion B). The sleep problems are not better accounted for by other Sleep Disorders or other mental disorders (Criterion C) and are not due to the direct physiological effects of a substance or a general medical condition (Criterion D).
The diagnosis of Circadian Rhythm Sleep Disorder should be reserved for those presentations in which the individual has significant social or occupational impairment or marked distress related to the sleep disturbance. Individuals vary widely in their ability to adapt to circadian changes and requirements. Many, if not most, individuals with circadian-related symptoms of sleep disturbance do not seek treatment and do not have symptoms of sufficient severity to warrant a diagnosis. Those who present for evaluation because of this disorder are most often troubled by the severity or persistence of their symptoms. For example, it is not unusual for shift workers to present for evaluation after falling asleep while on the job or while driving.
The diagnosis of Circadian Rhythm Sleep Disorder rests primarily on the clinical history, including the pattern of work, sleep, naps, and "free time." The history should also examine past attempts at coping with symptoms, such as attempts at advancing the sleep-wake schedule in Delayed Sleep Phase Type. Prospective sleep-wake diaries or sleep charts are often a useful adjunct to diagnosis.
Subtypes Delayed Sleep Phase Type. This type of Circadian Rhythm
results from an endogenous sleep-wake cycle that is delayed relative to the demands of society. Measurement of endogenous circadian rhythms (e.g., core body temperature) reflects this delay. Individuals with this subtype ("night owls") are hypothesized to have an abnormally diminished ability to phase-advance sleep-wake hours (i.e., to move sleep and wakefulness to earlier clock times).
As a result, these individuals are "locked in" to habitually late sleep hours and cannot move these sleep hours forward to an earlier time. The circadian phase of sleep is stable: individuals will fall asleep and awaken at consistent, albeit delayed, times when left to their own schedule (e.g., on weekends or vacations).
Affected individuals complain of difficulty falling asleep at socially acceptable hours, but once sleep is initiated, it is normal. There is concomitant difficulty awakening at socially acceptable hours (e.g., multiple alarm clocks are often unable to arouse the individual). Because many individuals with this disorder will be chronically sleep deprived, sleepiness during the desired wake period may occur.

Jet Lag Type. In this type of Circadian Rhythm Sleep Disorder, the endogenous circadian sleep-wake cycle is normal and the disturbance arises from conflict between the pattern of sleep and wakefulness generated by the circadian system and the pattern of sleep and wakefulness required by a new time zone. Individuals
with this type complain of a mismatch between desired and required hours of sleep and wakefulness. The severity of the mismatch is proportional to the number of time zones traveled through, with maximal difficulties often noted after traveling through eight or more time zones in less than 24 hours. Eastward travel (advancing sleep-wake hours) is typically more difficult for most individuals
to tolerate than westward travel (delaying sleep-wake hours).

Shift Work Type. In this type of Circadian Rhythm Sleep Disorder, the
endogenous circadian sleep-wake cycle is normal and the disturbance arises from conflict between the pattern of sleep and wakefulness generated by the circadian system and the desired pattern of sleep and wakefulness required by shift work.

Rotating-shift schedules are the most disruptive because they force sleep and wakefulness into aberrant circadian positions and prevent any consistent adjustment.
Night- and rotating-shift workers typically have a shorter sleep duration and more frequent disturbances in sleep continuity than morning and afternoon workers. Conversely, there may also be sleepiness during the desired wake period, that is, in the middle of the night work shift. The circadian mismatch of the Shift Work Type is further exacerbated by insufficient sleep time, social and family demands, and environmental disturbances (e.g., telephone, traffic noise) during intended sleep times.

Unspecified Type. This type of Circadian Rhythm Sleep Disorder should be indicated if another pattern of circadian sleep disturbance (e.g., advanced sleep phase, non-24-hour sleep-wake pattern, or irregular sleep-wake pattern) is present. An "advanced sleep phase pattern" is the analog of Delayed Sleep Phase Type, but in the opposite direction: individuals complain of an inability to stay
awake in the evening and spontaneous awakening in the early morning hours. "Non-24-hour sleep-wake pattern" denotes a free-running cycle: the sleep-wake schedule follows the endogenous circadian rhythm period of approximately 24-25 hours despite the presence of 24-hour time cues in the environment. In contrast to the stable sleep-wake pattern of the Delayed or advanced sleep phase
types, these individuals' sleep-wake schedules become progressively delayed relative to the 24-hour clock, resulting in a changing sleep-wake pattern over successive days. "Irregular sleep-wake pattern" indicates the absence of an identifiable pattern of sleep and wakefulness.

Associated Features and Disorders
Associated descriptive features and mental disorders. In Delayed Sleep Phase Type, individuals frequently go to bed later and wake up later on weekends or during vacations, with a reduction in sleep-onset difficulties and difficulty awakening. They will
typically give many examples of school, work, and social difficulties arising from their inability to awaken at socially desired times. If awakened earlier than the time dictated by the circadian timekeeping system, the individual may demonstrate "sleep drunkenness" (i.e., extreme difficulty awakening, confusion, and inappropriate behavior).
Performance often also follows a delayed phase, with peak efficiency occurring in late-evening hours.
Jet Lag and Shift Work Types may be more common in individuals who are "morning types." Performance is often impaired during desired waking hours, following the pattern that would be predicted by the underlying endogenous circadian rhythms. Jet lag is
often accompanied by nonspecific symptoms (e.g., headache, fatigue, indigestion) that relate to travel conditions, such as sleep deprivation, alcohol and caffeine use, and decreased ambient air pressure in airplane cabins. Dysfunction in occupational, family,
and social roles is often observed in individuals who have difficulty coping with shift work. Individuals with any Circadian Rhythm Sleep Disorder may have a history of alcohol, sedative-hypnotic, or stimulant use resulting from attempts to control their
inappropriately phased sleep-wake tendencies. The use of these substances may in turn exacerbate the Circadian Rhythm Sleep Disorder.
Delayed Sleep Phase Type has been associated with schizoid, schizotypal, and avoidant personality features, particularly in adolescents. "Non-24-hour sleep-wake pattern" and "irregular sleep-wake pattern" have also been associated with these same
features. Jet Lag and Shift Work Types may precipitate or exacerbate a Manic or Major Depressive Episode or an episode of a Psychotic Disorder.

Associated laboratory findings. Sleep studies yield different results depending on what time they are performed. For individuals with Delayed Sleep Phase Type, studies conducted at the preferred sleep times will be essentially normal for age. However, when studied at socially normal sleep times, these individuals have prolonged sleep
latency, spontaneous awakening occurring late relative to social convention, and (in some individuals) moderately short REM sleep latency. Sleep continuity is normal for age. Laboratory procedures designed to measure the phase of the endogenous circadian pacemaker (e.g., core body temperature) reveal the expected phase delay in the timing of acrophase (peak time) and nadir.
When studied during their habitual workweek sleep hours, individuals with Shift Work Type usually have normal or short sleep latency, reduced sleep duration, and more frequent sleep continuity disturbances compared with age-matched individuals
with "normal" nocturnal sleep patterns. There is a specific reduction in stage 2 and REM sleep in many cases. Tests of sleep tendency, such as the Multiple Sleep Latency Test (MSLT), show a high degree of sleepiness during desired wake times (e.g., during the night shift). When studied after a period of adjustment to a normal diurnal schedule, these individuals have normal nocturnal sleep and normal levels of daytime sleepiness.
Laboratory studies of 6-hour simulated jet lag demonstrate prolonged sleep latency, impaired sleep efficiency, reductions in REM sleep, and minor reductions in slow-wave sleep. These features recover toward baseline values over 1-2 weeks.
Associated physical examination findings and general medical conditions.
No specific physical findings are described for Circadian Rhythm Sleep Disorder. Shift workers may appear haggard or sleepy and may have an excess of cardiovascular and gastrointestinal disturbances, including gastritis and peptic ulcer disease. The roles of caffeine and alcohol consumption and altered eating patterns have not been fully evaluated in these cases. "Non-24-hour sleep-wake pattern" often occurs in blind individuals. Circadian Rhythm Sleep Disorder may exacerbate preexisting general medical conditions.

Specific Age Features
Shift work and jet lag symptoms are often reported to be more severe, or more easily induced, in late-middle-aged and elderly individuals compared with young adults. "Advanced sleep phase pattern" also increases with age. These findings may result from age-related deterioration in nocturnal sleep and shortening of the endogenous circadian period.

Prevalence: The prevalence for any of the types of Circadian Rhythm Sleep Disorder has not been well established. Surveys suggest a prevalence of up to 7% for Delayed Sleep Phase Type in adolescents and of up to 60% for Shift Work Type in night-shift workers. Without intervention, Delayed Sleep Phase Type typically lasts for years or decades but may "correct" itself given the tendency for endogenous circadian rhythm phase to advance with age. Treatment with progressive phase delay of the sleep-wake schedule can often normalize sleep hours at least temporarily, but there is a persistent vulnerability for falling back to delayed sleep hours.
Shift Work Type typically persists for as long as the individual works that particular schedule. Reversal of symptoms generally occurs within 2 weeks of a return to a normal diurnal sleep-wake schedule.
Experimental and field data concerning jet lag indicate that it takes approximately 1 day per time zone traveled for the circadian system to resynchronize itself to the new local time. Different circadian rhythms (such as core body temperature, hormonal level, alertness, and sleep patterns) may readjust at different rates.
Differential Diagnosis
Circadian Rhythm Sleep Disorder must be distinguished from normal patterns of sleep and normal adjustments following a change in schedule. The key to such distinctions lies in the persistence of the disturbance and the presence and degree of social or occupational impairment. For instance, many adolescents and young adults
maintain delayed sleep-wake schedules, but without distress or interference with school or work routines. Almost anyone who travels across time zones will experience transient sleep disruption. The diagnosis of the Jet Lag Type should be reserved for an individual with frequent travel requirements and associated severe sleep disturbances and work disruption.
Delayed Sleep Phase Type must be differentiated from volitional patterns of delayed sleep hours. Some individuals who voluntarily delay sleep onset to participate in social or work activities may complain of difficulty awakening. When permitted to do so, these individuals fall asleep readily at earlier times and, after a period of recovery sleep, have no significant difficulty awakening in the morning. In such cases, the primary problem is sleep deprivation rather than a Circadian Rhythm Sleep Disorder. Other individuals (particularly children and adolescents) may volitionally shift sleep hours to avoid school or family demands. The pattern of difficulty awakening vanishes when desired activities are scheduled in the morning hours. In a similar way, younger children involved in limit-setting battles with parents may present as having Delayed Sleep Phase Type.
Jet Lag and Shift Work Types must be distinguished mainly from other primary Sleep Disorders, such as Primary Insomnia and Primary Hypersomnia. The history of jet lag or shift work, with undisturbed sleep on other schedules, usually provides sufficient
evidence to exclude these other disorders. In some cases, other primary Sleep Disorders, such as Breathing-Related Sleep Disorder or periodic limb movements during sleep, may complicate Shift Work or Jet Lag Types. This possibility should be suspected when reversion to a normal diurnal schedule does not provide relief from sleep-related symptoms. Other types of Circadian Rhythm Sleep Disorder, such as "non-24-hour sleep-wake pattern" and "irregular sleep-wake pattern," are distinguished from the Delayed Sleep Phase Type by the stably delayed sleep-wake hours characteristic of the latter.
Patterns of delayed or advanced sleep that occur exclusively during another mental disorder are not diagnosed separately (e.g., a pattern of early morning awakening in Major Depressive Disorder or a pattern of delayed sleep in Schizophrenia).
Substances (including medications) can cause delayed sleep onset or awakening in the morning. For instance, consumption of caffeine or nicotine in the evening may delay sleep onset, and the use of hypnotic medications in the middle of the night may delay the time of awakening. A diagnosis of Substance-Induced Sleep Disorder may
be considered if the sleep disturbance is judged to be a direct physiological consequence of regular substance use and warrants independent clinical attention.
General medical conditions rarely cause fixed delays or advances of the sleep-wake schedule and typically pose no difficulty in differential diagnosis.

Posted in Circadian Solstice??? on 11 Nov, 2011 - 11:05 pm

Hi to all,
A section lifted from the Diagnostic and Statistical manual of Mental Disorders Volume 4 or DSM IV. It explains some of the mechanisms at play behind sleep and vascular type headahes. It is not light reading and I need to go away and google quite a few terms in order to understand it all. Perfect for when you can't get any sleep...

Of particular interest to a CHer may be this section: "A subset of individuals with Primary Hypersomnia have a family history of hypersomnia and also have symptoms of autonomic nervous system dysfunction, including recurrent vascular-type headaches, reactivity of the peripheral vascular system (Raynaud's phenomenon), and fainting."

Does anyone else suffer from most of these symptoms in the middle of a bout?
How's everyone sleeping with/without CH this time of year, season change and all?

Cheers, Ben.

DSM IV - 307.44 Primary Hypersomnia 559

Associated Features and Disorders

Associated descriptive features and mental disorders.

In Primary Hypersomnia, sleep tends to be continuous but nonrestorative. Individuals with this disorder fall asleep quickly and have good sleep efficiency, but may have difficulty waking up in the morning, sometimes appearing confused, combative, or ataxic. This prolonged impairment of alertness at the sleep-wake transition is often referred to as "sleep drunkenness."

Persistent daytime sleepiness can lead to automatic behavior (usually of a very routine, low-complexity type) that the individual carries out with little or no subsequent recall. For example, individuals may find themselves having driven several miles from where they thought they were, unaware of the "automatic" driving they did in the preceding minutes. Although precise data are not available regarding comorbidity with mental disorders, many individuals with Primary Hypersomnia have symptoms of depression that may meet criteria for Major Depressive Disorder. This may be related to the psychosocial consequences of excessive sleepiness. Individuals with hypersomnia are also at risk for Substance-Related Disorders, particularly related to self-medication with stimulants.

Associated laboratory findings. In Primary Hypersomnia, nocturnal polysomnography demonstrates a normal to prolonged sleep duration, short sleep latency, normal to increased sleep continuity, and normal distributions of rapid eye movement (REM)
and non-rapid eye movement (NREM) sleep. Some individuals with this disorder may have increased amounts of slow-wave sleep. Sleep-onset REM periods (the occurrence of REM sleep within 20 minutes of sleep onset), breathing-related sleep disturbances,
and frequent limb movements disrupting sleep are not present. The Multiple Sleep Latency Test (MSLT) documents excessive physiological daytime sleepiness, typically indicated by mean sleep latency values of 5-10 minutes. REM sleep does not occur during the daytime sleep episodes. Nocturnal polysomnography and the MSLT do not reveal findings characteristic of other causes of hypersomnia.

In the Recurrent Kleine-Levin form of Primary Hypersomnia, routine EEC studies performed during the periods of hypersomnia show general slowing of the background rhythm and PAROXYSMAL BURSTS of theta activity. Nocturnal polysomnography shows an increase in total sleep time and short REM sleep latency. MSLT studies confirm increased physiological sleepiness, with sleep latencies generally less than 10 minutes. Sleep-onset REM periods may be seen during symptomatic periods.

Associated physical examination findings and general medical conditions.

Individuals with Primary Hypersomnia often appear sleepy and may even fall asleep in the clinician's waiting area. A subset of individuals with Primary Hypersomnia have a family history of hypersomnia and also have symptoms of autonomic nervous system dysfunction, including recurrent vascular-type headaches, reactivity of the peripheral vascular system (Raynaud's phenomenon), and fainting. Individuals with the Recurrent Kleine-Levin form may have nonspecific neurological examination findings including
depressed deep tendon reflexes, dysarthria, and nystagmus.

Posted in Ride for Awareness on 11 Nov, 2011 - 11:48 am

Just throwing some ideas around here... I can't participate with dodgy knees, I rode a pushy for 20 years and boy am I tired!
Maybe these guys can help:

It says this in their introductory letter:
"If you are organizing an event focused on Headache and would like to include it on our website, please contact"
Sorry about the non-appearing link everyone, this is where the IASP desk link diverts you:

Maybe a bike ride can attract attention here? I don't know.
I am going to check out the IASP side of things and see if any ideas like this one can get wider publicity. I know the ABC will get behind it, JJJ's "Hack" program did a special on CH:
I am sure they would do a promo or a follow up for any CH cause.
(The ABC are great, I know a few people there, they will hear us out...)
Maybe if you get social networking across this it will spread the word.
For this you will need to grab the nearest 15 year old with an iPhone, I am social network illiterate. There seem to be a few platforms over in Facebook (not a member sorry).

I have had a fair bit to do with organising groundswells (even a failed bike-ride for charity!) in the past and like Peter I am cynical about anything happening. I wish you luck. But negative thoughts like mine condemn these ideas to failure from the outset. I sincerely hope that a public awareness campaign can change public perception about "Headaches" in general by whatever means - bike ride or anything that will do the job.
We can bring media attention to CH. I can't do much else to help from where I am.
We have to start somewhere, maybe this info will help.

Cheers, Ben.

Posted in Are they cluster headaches? Who can diagnose me properly? on 11 Nov, 2011 - 8:05 am

Hi to all,
Sorry to chime in here, haven't tried Maxalt yet, but my specialist says it is a slower acting triptan with longer duration. It is aimed squarely at Migraine Headache conditions (This doesn't mean it won't work in CH, but it is fighting an uphill battle I suspect). My specialist didn't prescribe Maxalt to me (unless I want to try it) because the onset of my CH is faster than Maxalt can act. Maxalt is likely to leave me with a full on CH attack and nausea as an added bonus... so I am sticking with Imigran.

Rizatriptan (MAXALT) has been around for a while and has proven efficacy in CH, current "trends" in FDA approvals from the US indicate to me that MAXALT as a mode of delivery is a bit of a gimmick, (as is FDT to Imigran, but hey it works for me!) My specialist "Knows a thing or 2" about the Triptans, Zomig (Zolmitriptan) was spun out of one of his research projects and from what I understand my quietly spoken specialist is one of the foremost scientists working on Triptan development (and many other CH drugs/treatments). We have spent a lot of time attenuating drugs (especially Triptans) to suit the specific demands of my CH condition...

Here is the lowdown on MAXALT from the PBS:

Rizatriptan "Product Information" sheet:
(This shows how long Maxalt takes to work and to wear off etc)

Rizatriptan "Consumer Medical Information sheet":

I am sure your Pharmacist included this leaflet, but just in case...
This document does mention " feeling sick (nausea), vomiting" as a side effect.
I concur with the guys on here so far, the Triptans are probably far more likely to make you feel sick than 10mg Endep.

In my experience the Triptans are safe, well understood and very effective abortive medications for CH. The trick is to find the right one and the right mode of delivery for your condition. This can take some considerable trial and error. I have short, sharp attacks starting in less than 30 seconds (most times) and lasting average 90 minutes. Imigran (Sumatriptan) is perfect for my CH as it acts real fast (either in FDT 50mg tablet or 6mg injectable form) and leaves the body very quickly. Others have CH that persists for 3 hours or more and leans toward the migraneous end of the spectrum - MAXALT seems to be doing some good for longer duration CH patients, but by all reports it is slow acting and makes people feel ill. Most Triptans make me feel sick (Yep, done 'em all except Maxalt). In Australia Imigran seems to be the Triptan of choice.
It can be administered in normal tablet form at 50 or 100mg, Nasal spray, or injectable form. It is not as long lasting as MAXALT, but it is faster acting from my experience with Triptans. I think the mode of delivery by injection or FDT (Fast dispersion tablet) is the trick with getting Triptans to work for you, not against you.
I had to match the Triptan and mode of delivery with the patient (me) basically, we are all different and respond differently to Triptans.

Endep is commonly prescribed as a preventive for CH. I have done extensive drug trials on all the Tri-cyclic anti-depressants used in CH. Endep can help to underpin stability when CH strikes. It can make living with CH a little bit easier if it works for you. My Pain Management Unit explained that by taking Endep I would have a slightly reduced perception of pain (yay, a holiday!), it helps to re-establish sleep patterns (of HUGE importance in CH - see "Circadian Rhythm" in CH).
I don't think it was ever prescribed to prevent CH outright, but your GP is on the money, it is a recognised treatment for CH used in Pain Management Units around the world.
It is prescribed in many chronic pain conditions.

A friend of mine has just completed week 3 of 10mg ENDEP. It was prescribed by a pain unit to assist with a gastrointestinal condition. He reports no nausea or illness and he is super sensitive to any nausea following stomach surgery. Endep has presented no problem for him there. 10mg is a very low introductory dose, it does take a few days to stabilise, after 2 weeks usually you know either way - whether the drug is well tolerated or not. It will not stop CH outright, but maybe make it easier to cope with and manage.

The info sheet on ENDEP (Amitriptyline):

This mentions Nausea too, but I honestly think that the MAXALT is the culprit there.
ENDEP did nothing for me, but we tried a close cousin called Dothiepin, that gave me a quality of life gain for about 3 years. It never stopped a CH, just increased my indifference to my plight. I think that is how it works.

Remember, I am not a Doctor.
Just trying to point CHers in the direction of the right info.
As Peter said, "ALWAYS check" on your medications, don't trust the Doctors outright. Drug contraindications can be a big problem when finding the right CH treatments.

Good luck with it all.

Cheers, Ben.

Posted in CH - Do they ever stop? on 05 Nov, 2011 - 8:09 am

Sorry for the reply. I just get very frustrated on others behalf when they come up against medical ignorance. This Neuro seems to have the wrong idea.
Arthrexin, otherwise known as Indomethacin or Indocid is used to correctly diagnose CH or rule it out. It is a blunt instrument approach, but worth a try I admit. CH generally does not respond to Indomethacin (there are exceptions, but very few), where many other headache conditions do respond directly to Indomethacin. There are "Indomethacin responsive" headache conditions. CH is generally not one of them. I used it to confirm my CH diagnoses when the drug failed to treat my CH.
All part of the diagnostic process for me...

I am suspicious that your Neuro may have got it wrong and you may possibly have a different headache condition, maybe not CH after all. (good news!)
One thing is for sure, the stuff will burn a hole through your gut in the long term!

Here are some examples of headaches that respond to Indomethacin.

Paroxysmal hemicrania

Attacks with similar characteristics of pain and associated symptoms and signs to those of cluster headache, but they are shorter-lasting, more frequent, occur more commonly in females and respond absolutely to indomethacin.

Hemicrania continua

Persistent strictly unilateral headache responsive to indomethacin.

By all means, have a look at the diagnostic criteria at the IHS site and see what best matches your reported symptoms. 3+ hours in duration of attacks is leaning toward the migraneous end of the spectrum, maybe some longer acting triptans would work as abortives. Isoptin (Verapamil) also has a cousin called Diltiazem, with which I had some degree of success as a preventive. I am surpirised you are not on Deseril or an anti-convulsant drug as a preventive. Indomethacin is hard to sustain as a preventive, it has a long and bad record of causing gastrointestinal complications.

If Indomethacin works for you at all, maybe you have a different headache condition to CH. Either way, with a Neuro that thinks CH will mysteriously vanish by the age of 40, I would be seeking a second opinion and a third. In the meantime we can only hope that the Global year against headache campaign for 2011 helps to better educate Neuros and other medical staff on all things headache.

Good luck with it.
I hope you dial right in on it, because you may be lucky enough to find the right drug or treatment plan that works for you, there are so many options now. Keep that sense of hope going!
If it is CH there is no "cure" yet, but we are getting a lot better at managing the condition every year.
I reckon you might crack this one with the right specialist help mate.

Cheers, Ben.

Posted in CH - Do they ever stop? on 04 Nov, 2011 - 9:22 am

What a load of Neuro's Bullshit. Your Neuro should go back to University or at least have a working knowledge of Google...
Had CH since birth, 35 years old and the CH attacks are still going strong, gets worse every year for me. Average mean age for CH in Men is about 55, average starting age is 35. I just tried to find a case of PERMANENT and confirmed (Diagnosed) CH remission, I could not locate a record of one case anywhere online as yet.
I will keep looking, I would like an answer to this question too.

Sorry Jrod, I call it how I see it.
Welcome to the site.
It is full of people with sore heads... you will have to excuse me, I lack diplomacy some days... I think it might be the insanity from hearing comments like this from Neuros... See what we are still up against??
Ignorance prevails once again in medicine.
Give your Neuro a link to this site and see if they still think CH just "goes away"...


Posted in Untitled on 04 Nov, 2011 - 9:19 am

Hi Matt,
My thoughts are with you. I know you are seriously in a bad bout, but there is some good news on the reseach front if you have the time/space to be able to check it out.
New tab on the left...
It may be of interest to you. I know how hard it is to start a petition or any groundswell, nevermind trying to do all that mid-CH. Looks like the boffins have started their own groundswell and we can jump onboard. I take my hat off to you Matt for persistence alone.
You are one of the strongest people I have ever come across in a lifetime of CH.


Posted in Has anyone done a graph to the diaries to this site? on 31 Oct, 2011 - 10:13 am

What's your theory mate? I am interested to hear it.
We are throwing all sorts of ideas about geographic location and prevalence of CH on the "Circadian Solstice???" thread. So far the experiences from around the world are very enlightening.

As for profiting from CH, I know there are not enough of us to justify research and we lack new drugs because of it. But some recent productivity reports in Australia show huge financial loses due to absenteeism, a major cause is Migraine Headache.
Nothing gets the private sector moving like the smell of a buck to be saved or made, so it will ultimately work in our favour, I think.
So many treatments overlap from migraine to CH that I expect the promised productivity gains alone would get someone's arse into gear on a new headache wonderdrug (like CGRP receptor antagonists). There are millions of people with Migraine, hopefully their research dollar helps CH too. We live in hope...

Cheers, Ben.

Posted in Hello. My name's Leigh. on 31 Oct, 2011 - 9:57 am

I am not handing out medical advice here outright, a simple list of medications can be a dangerous thing. Every new nedication should be properly prescribed and supervised by your GP and/or Specialist in the correct clinical setting.
I am reluctant to simply hand out a list of drug names without the accompanying Patient's documentation. Unfortunately, if you want to trial many new CH drugs and live you will need to read some pretty heavy documentation along the way. Better off educated than dead, I reckon.

Some PREVENTIVES used with proven efficacy in CH treatment:
Verapamil, Diltiazem (Calcium channel blockers)
Deseril (Methysergide)
Lithium Carbonate
Amitriptyline (and many other "anti-depressant" compounds)

Anti-convulsant medications used in the treatment of Epilepsy and other conditions:
There are too many to list here, so I provided a link.
Here are some of the more common anti-convulsant drugs used in CH:
Topiramate, Sodium Valproate, Lamotrigine, Gabapentin, Pregabalin etc.

A couple of other options:
Oxygen, used as an abortive, but a much more desirable alternative than long term medication use, from where I sit anyway...
Cortisone - a Corticosteroid. This is neither strictly an abortive nor a preventive drug, but it can arrest a CH bout very quickly in most people.

There are a truckload of ABORTIVES to be taken on a "per attack" basis.
Not to be confused with PREVENTIVES. This is another subject altogether.
You may need both or even combinations of drugs to target your CH.
Check with your specialist.
I am sure there are some drugs I have missed, but I don't want to overwhelm you with too much info mate.

Cheers, Ben.

Posted in HELP Do I suffer from cluster headaches, severe migraines or menstrual migraines on 30 Oct, 2011 - 6:52 pm

Hi to all,
The International Headache Society's web based application (Tab on the left under external links marked "Int. Headache Society") is an excellent diagnostic tool.
It allows the user to sift large amounts of info on headache conditions by relevance using the built in search tool. You can come at it from any angle, the menus and subheadings are informative, allowing any individual to pose many different questions about their headache condition. This resource covers the diagnostic criteria that Neurologists and other specialists may use to help diagnose a headache condition. From what I can work out, it draws upon all of the other papers, trial outcomes and body of available medical literature on all Headache conditions- all the huge pdfs we have all had to sift through before.

Whilst we are not Doctors and all have to be wary of self-diagnosis and inaccuracies, my specialist has encouraged the use of the internet for research by patients. Some patients have cut years off their diagnosis times simply by presenting in front of a Dr or specialist and saying "I think I may have Cluster Headache...". What harm can it do?
An educated patient is a better patient - as my specialist once commented. The difference between this web based application and pdfs/links is basically the ability to dial in on relevant and specific information very quickly, without having to get a sore neck sifting the old huge pdfs by CTRL+F all the time...

Anyway, enjoy, I hope everyone uses this resource and gets something from it.

Cheers, Ben.

Posted in Understanding this headache on 29 Oct, 2011 - 11:20 am

No worries, glad to help.
Yes, I would say the old "You look like a ghost" syndrome would be perfectly normal after some serious headaches. I saw some photos of myself taken a few months back mid CH hammering and I was shocked. I looked like a cross between John English and Keith Richards - positively transparent. Quite shocking indeed and I didn't think I felt that bad either... I usually feel like I have been hit with a blunt instrument between attacks.

Peter is probably right about walking into any GP with info off the net, but the power of suggestion is a wonderful thing. I don't reckon you should keep your mouth shut either, I did this out of politeness for years and I just suffered longer for it. Healthy discussion is good. If a GP can't have an open 2 way dialog with you about your headache condition and make sure you are treated - go for a second opinion. At least mentioning SUNCTS or whatever symptoms you report is a good place to start. I suppose with a diary of your symptoms in hand and the IHS classifications in the other, any GP would find your reported symptoms hard to dismiss. GPs are still supposed to listen to their patient's reported symptoms, no matter what the condition.

I am lucky enough to have been with the same GP for well over 10 years, so I can walk in and throw hypothetical ideas around with abandon, we discuss them, he brings me back to earth. But this relationship took a long time to cultivate, my GP became CH aware through me alone. The rarity of CH means that he is not likely to see another case in his career, but if he does, I have saved the next CH patient about 7 years of GP educating on CH conditions... I cannot stress the importance of building a strong relationship with your GP when it comes to diagnosing and managing headache conditions. Later on if things get tricky with Neuros/Surgeons and other specialists, your GP can be the glue that holds the whole thing together. In my case a solid understanding between me and my GP underpins my entire treatment plan so that my specialist and I can work together trialling new treatment methods and continue the search for answers.

Anyway, good luck with it.
Battery dying!

Cheers, Ben.

Posted in Understanding this headache on 27 Oct, 2011 - 4:51 pm

Hi Bellie and Peter,
I don't want to over complicate things, but I will chime in with some links to outline a bit around what Peter was talking about. Here's the IHS diagnostic criteria for Paroxysmal Hemicrania:

It seems to fit well with your reported symptoms Bellie. It is a condition responsive to a drug called Indomethacin:
Which is good news and is (whilst I can't speak for Peter) what I suspect he was getting at. I have trialled Indomethacin in Cluster Headache before, watch out for its gut burning properties if used long term. It is an old drug and is well understood.
As Peter said, we are not Doctors, check with your GP/Specialists.
I am not trying to pin the tail on the donkey here by any means, but attacks lasting 30 seconds also fit another headache I know of called SUNCTS:

For all I know they could also be a couple of dozen other things, but thats what the specialists are for. I hope you have some luck homing in on what this is, then the Doctors can really dial in on the right treatment for you.

Good luck.

Cheers, Ben.

Posted in GLOBAL YEAR AGAINST HEADACHE 2011 on 24 Oct, 2011 - 10:06 am

Hi Readers,
The International Association for the Stupy of Pain (IASP) has some exciting news. 2011 will be the "Global year against headache", running from Oct 2011- Oct 2012. With forum users looking into many ideas to raise awareness and attract research funding (Bike rides and petitions etc...), this should come as very welcome news.

Here is an open invitation from the IASP president to roll up your sleeves and participate.
The IASP has a great website featuring heaps of current Headache info with tabs on the left including :
• Press Release
• Fact Sheets
• Resources
• Events & Media Coverage
• Register for Updates
• About the Global Year

Letter from the IASP President

"Dear Colleagues,

I am pleased to announce the 2011-2012 Global Year Against Headache campaign, which will launch on Monday, October 17, 2011. This year, the IASP-sponsored initiative will draw attention to one of the most common, painful, and disabling conditions that affect people throughout their lives: the headache. We are proud to work this year with the International Headache Society, whose members collaborated with ours to write fact sheets on different headache types and classifications, the epidemiology of headache, and approaches to study and treatment. They are available free in the five WHO languages on the IASP website. We hope you will join the campaign by:

- Disseminating information on headache throughout the world.

- Educating not only pain researchers and clinicians within the 130+ countries that comprise the IASP membership, but also the larger global community of health care professionals who witness the problems associated with headache firsthand in their daily interactions with patients.

- Increasing awareness of headache among government officials, media, and the general public worldwide.

- Encouraging government leaders, research institutions, and other key decision-makers to support more research, ultimately producing more effective and accessible treatment methods and outcomes for people with headache.

Throughout the campaign, which will run through late October 2012, IASP members and chapters will organize meetings, symposia, patient-education events, publications, and many other efforts exploring different aspects of the headache. In addition, IASP and its chapters will sponsor media efforts highlighting some of the challenges posed by headache (such as the latest research techniques on headache, ways to address various types of headache pain, and genetic factors leading to headache). Those efforts will be posted on these pages.

I encourage you to get involved in any such activities planned in your area. Whether you help to plan and organize an event, deliver a talk related to acute pain, or attend a meeting to show your support, your participation is essential to the success of the Global Year Against Headache. Please contact your local IASP chapter, or the IASP secretariat office at, for more information.

Be sure to visit these Global Year web pages regularly, where you will find a series of fact sheets focusing on many topics and issues surrounding headache – furnished in English, Arabic, Chinese, French, Spanish, as well as other languages to come. The fact sheets, campaign posters, logos, and other resources are available on the website to all at no cost. You can also complete the online form to request Global Year Updates (via email) with the latest news and campaign resources.

By supporting the Global Year and becoming actively involved, we can do much to minimize the pain and suffering from headache, one of the most frequent of medical complaints seen in general practice. IASP would also like to learn about success stories where chapters or hospitals have made special efforts and improved the management of headache. We will share your stories and photos on the website and through the IASP e-Newsletter.

We look forward to a successful Global Year!

Kind Regards,
Eija Kalso
IASP President"

The site:

I assume that everyone with CH wants to raise awareness of CH in the wider community and attract more research funding. A platform for raising awareness has been lacking to date - hence the petition, CH name change and bike ride ideas on this site.
Well, here it is Ladies and Gentlemen - you got it - a platform.
The "Global year against Headache" platform looks like a good place to start. Get busy, get involved, the invitation has kindly been extended to us all by Eija Kalso.
Here is our big chance to have a go at raising awareness while someone somewhere may just be listening...
We live in hope.

Cheers, Ben.

Posted in Hot off the press... on 17 Oct, 2011 - 5:54 pm

Hi to all,
Check out your TV news services and watch out online over the next few days as they roll out the "Global Year Against Headache" campaign. Heaps of research will be going on, as the evening news reported here. This has got to be good news for all of us, about time we had some too:

Cheers, Ben.

Posted in A Cure for Cluster headaches!!! on 13 Oct, 2011 - 7:32 pm

Hey guys, not against shrooms at all, tried em myself as I said, not dismissing them in CH at all, like Shell says, the proof is there that they work for some people.
However, something here for South Australians to consider when going for a walk. From my research, I see similar state and territory laws applicable throughout Australia and the National Park system. A mate of mine is doing a degree in parks management, he put me onto this info, taken from the SA legislation:

47—Unlawful taking of native plants
(1) Subject to this Part, a person must not take a native plant—
(a) on any reserve, wilderness protection area or wilderness protection zone; or
(b) on any other Crown land; or
(c) on any land reserved for or dedicated to public purposes; or
(d) on any forest reserve.
(2) A person must not take a native plant of a prescribed species on private land.
(3) A person who contravenes subsection (1) or (2) is guilty of an offence.
Maximum penalty:
In the case of a native plant of an endangered species, $10 000 or imprisonment
for 2 years.
In the case of a native plant of a vulnerable species, $7 500 or imprisonment for
18 months.
In the case of a native plant of a rare species, $5 000 or imprisonment for
12 months.
In any other case, $2 500 or imprisonment for 6 months.
(4) A person must not take a native plant on private land without the consent of the owner of the land.
Maximum penalty: $1 000.
Expiation fee: $150.
(5) If in proceedings for an offence against this section it is proved that the defendant was found in possession of a native plant, it will be presumed, in the absence of proof to the contrary, that the defendant took the plant in contravention of this Act.
(6) It is a defence to a charge of an offence against this section to prove that the act
alleged against the defendant—
(a) was neither intentional nor negligent; or
(b) was done in pursuance of some statutory authority.
48—Unlawful disposal of native plants
(1) A person must not sell or give away a native plant of a prescribed species.
Maximum penalty:
In the case of a native plant of an endangered species, $10 000 or imprisonment
for 2 years.
In the case of a native plant of a vulnerable species, $7 500 or imprisonment for
18 months.
In the case of a native plant of a rare species, $5 000 or imprisonment for
12 months.
In any other case, $2 500 or imprisonment for 6 months.
(2) It is a defence to a charge of an offence against this section to prove that the native
plant was taken pursuant to a licence under the Forestry Act 1950.
48A—Illegal possession of native plants
(1) A person must not have in his or her possession or control a native plant that has been
illegally taken or acquired.
Maximum penalty:
In the case of a native plant of an endangered species, $10 000 or imprisonment
for 2 years.
In the case of a native plant of a vulnerable species, $7 500 or imprisonment for
18 months.
In the case of a native plant of a rare species, $5 000 or imprisonment for 12
In any other case, $2 500 or imprisonment for 6 months.
(2) For the purposes of this section, a native plant is illegally taken or acquired if taken or
acquired contrary to this Act or any other Act or law of the State, or contrary to the
law of another State or Territory of the Commonwealth.
(3) In proceedings for an offence against this section the onus lies on the defendant to
prove that the native plant was not taken or acquired illegally.

The document:

Its always good to be informed...

Cheers, Ben.

Posted in Need help with Imigran pdf/jpeg on 13 Oct, 2011 - 6:56 pm

Just found an alternative version, but it still does not contain the information in table form like the injector refill pack does...
There is a link to the PDF on this site, most of it is still applicable, but it looks like the old Mark 1 injector version, rather than the Mk II document that I am after.

I think this one may contain all the tables like the leaflet I want, still - can anyone else tell me how to scan it, host it, post it etc?

Posted in Need help with Imigran pdf/jpeg on 13 Oct, 2011 - 6:42 pm

Hi to all,
I have been after a digital version of the leaflet contained in Imigran injector refill packs. There are 2 of them, one is on the self-injection procedure, the other is a huge fold out document in fine print that goes into extensive detail about clinical trial outcomes and dosages etc. This one is the one I want to post. I have this particular leaflet, but I have no way to scan it and post it on the site as an image or document, or host it anywhere.

Can anyone help me out to get this into a jpeg or host it somewhere on an image hosting site like Barry explained about?

Anyone else got these leaflets? They don't seem to exist anywhere online.
The reason I am after it is because it has clinical details and outcomes from 12mg Imigran injections and details maximum dosages. This manufacturer's leaflet says somewhere in the fine print that 3 X 6mg injections were used per 24 hours during trials. It has so much information for users of the drug.

I have had 5 of the injections (don't worry Shell!) in 24 hrs in a week that saw me use well over a dozen injections and Imigran FDT. Needless to say, that was years ago and I don't use those levels anymore. You can get away with large usage, but I would not recommend it, I probably had more CH attacks caused by rebound from Imigran than relieved by it during this particular week years ago. All part of the learning curve for me and my Imigran...

I just want to get the manufacturer's version up here for reference to clarify modes of delivery and dosages, because so many people ask me questions about Imigran.

Can anyone help?

Cheers, Ben.

Posted in Is it time out yet? on 10 Oct, 2011 - 9:10 am

Hi to all,

Yes, preloaded - with a refill kit.
No, not on the PBS.

The datasheet on injector packs:
Heres a pic of the old kit:
Here's a pic of the 2 X refill cartridge:

The lowdown on Imigran injections:

I have addressed all Neil's other question about Imigran via PM.
If anyone else has any queries about Imigran or other CH drugs, feel free to ask, I can point most people in the right direction for some treatment and Doctor's supervision.

Cheers, Ben.

Posted in Thank you. on 10 Oct, 2011 - 9:02 am

Bloody oath it does Chris, print this off and show em this letter:

100mg of Pred? Are they crazy?
Watch out for the crash landing coming off Pred Chris, gee it's a big one if you don't get the taper just right. I have only done 50mg downwards. The CH attacks I experienced when rebounding off Pred (cold turkey) were the worst attacks I have ever experienced - hence the pain scale discussion etc.

(By the way, if wants to pick on me for using their pdf links, just remember we are all here for the same thing, to help eachother manage and live with CH)

Cheers, Ben.

Posted in Psyclobin (hallucinogens as CH treatment) on 10 Oct, 2011 - 8:54 am

Posted in Shrooms? on 10 Oct, 2011 - 8:41 am

Check this out people!
Demistifying the Shroom!

Posted in just how far can you go on 10 Oct, 2011 - 8:38 am

Good news indeed. The fungus thing was in jest - a reference to another thread(s) that we have going on. Some people are out looking for magic mushrooms to blast their heads with in an attempt to end CH bouts in one go. I have not done the reading or research on it yet, but it is called "busting" and is trendy in the US cluster sites at the moment. I am totally NOT up to speed on this yet, been there done that was my first thought... years ago I picked 140 of these mushrooms, simmered them down and used the liquid, made ice cubes out of it, dried and smoked mushrooms etc. Every method imaginable, no fun for me at all. Tried it for 3 years each mushroom season. Didn't work.

I grew up in the country.I know where these mushrooms are. They still grow there (I ain't telling where either), but I don't touch them, they were useless in my CH. A friend of mine is doing a degree in National Parks management to become a park ranger. He says you can be fined up to $10,000 for removing native vegetation from a National Park.
Then there's the legality issues around posession of an ilicit substance once you find the things...

From what I have read of the ergot-alkaloids, nearly every part of this mushroom has been isolated and chemically synthesised in a lab at one point or another.
Most are available as medications these days.
I understand that LSD can be problematic to obtain through your GP smile

but there are many ergot-based vasoconstrictors that help with CH.

Yeah, it is a nice walk and mushrooms can be a nice "break" from pain and reality, but beware the toadstool my friends!

Dev - "Trudging across the tundra, mile after mile" was a thinly veiled reference to Frank Zappa's "Don't eat the yellow snow", a timely piece of Zappa advice for those alpine shroom hunters!

Cheers, Ben.

P.S. I have drifted wildly off topic, sorry this should be in the shroom thread, but hey Alex - you asked! I will go to the shroom thread with some info.

Posted in Thank you. on 09 Oct, 2011 - 7:24 am

Prednisolone, otherwise known as Cortisone is a corticosteroid drug.
It is neither a long term CH preventive or abortive drug.
Much has been said on here about Cortisone. There are threads on here about it, many with great research links.

I am in 2 minds about this drug:

1 - It is probably the single most effective CH arresting drug available.
It has its place in acute CH treatment and is used to stabilise patients.
I have used it myself many times, it has stopped me from wanting to throw myself off the nearest building when nothing else will work.
Very effective, almost always guaranteed to work on CH.
It is a vital tool in managing CH and is often a Doctor's first choice when CH intervention is required.

2 - The side-effect burden.
I have had perhaps 7 or 8 "courses" of Pred in the last 13-14 years,
ranging anywhere from:
9 days - 50mg - no taper
1 month - 50mg start, then rapid taper ending in 1 month.
6-8 week - 50mg start dose, very slow taper down to 1mg doses.
It is a steroid Chris, you will be hyped up.

My specialist (A Professor of Clinical Pharmacology) warned me to be vigilant of "roid-rage" from Pred. He also went onto explain a complex series of cascade effects that allows your body to make its own Cortisone. We make 7.5 mg per day of the stuff naturally.
As soon as you start to take Pred, your adrenal gland stops producing its own supply of Cortisone. You will need to drop the Pred after 1 month or seek some advice about a "1 day on, 1 day off" dosage regime that allows your adrenal gland to kick back in and produce your own Cortisone. The longer you are on the stuff, the more likely you are to have side-effects and they are many.

I used to be a Pred advocate, it seemed like a miracle drug and it has its place, but recent Pred courses have given me a stomach ulcer and a 2nd round of Adult chicken-pox. I now had 2 more medical conditions to manage, right as I went off the Pred cold turkey. Not fun. Pred is no longer an option for me. Try taking Imigran tabs on a stomach ulcer everyone!!! So much fun...not!
My immune system is only recovering now - 3 months after my last Pred.

Complicated drug Chris, one best used minimally under very close medical supervision.
Personally, I would be getting off the stuff, it will make you feel like superman for a while, but after the dose tapers off, boy do you get thumped with pain again...
You can achieve amazing physical strength and tear muscles too.
I was silly enough to pick up a gearbox and hold it up under my car with one hand while I put the bolts in with the other hand, whilst on Pred. Hurt myself but didn't notice till later.
I have difficulty even lifting the same gearbox off the ground with both hands post-Pred.

Here is some not so light reading, it covers all you need to know about Pred:

Some robust discussion on the site a few months back on Cortisone use:

Check with your Doc Chris, but I would be getting off the stuff.

Cheers, Ben.

Posted in Is it time out yet? on 09 Oct, 2011 - 6:45 am

Watch out for rebound CH attacks from Imigran. They are generally not a problem until you reach high dosages like mine (up to 3 or 4 tabs or 2 inj per day).
From memory, the nasal spray was not PBS subsidised and was a bit cost prohibitive for me considering my frequency of attacks. Now you know Imigran works it might be an idea to ask your GP for some Imigran FDT 50mg tablets. These are PBS subsidised and can be dispensed in lots of 6 boxes of 4 tablets, under the "regulation 24" prescribing rules.

I have had extensive experience with the triptan drug group and for me the nasal spray was too slow to work and wore off quick.
The tablets on the other hand are supposed to be slower, but I report relief in 15-20 mins after taking Imigran tablets. Imigran is eliminated from the body very quickly (around 1 hour) so it can leave you with a rebound attack. I know that Imigran literature does not support my claim that Imigran tablets seem to taper off a bit more slowly (statistically) and have a slightly more gradual "let down".
One of my ways of preventing going into an Imigran use/overuse/rebound cycle is to take 900mg soluble aspirin with my dose of Imigran, this is an insurance policy against getting a rebound attack from Imigran, Aspirin will still be an effective blood thinner long after the Imigran has left your system. Hopefully preventing a rebound, limiting the headache event to one attack and hopefully keeping them at bay.

Persist with it Neil if it works, there are 3 modes of delivery for Imigran and it takes practice and experience to when to use Imigran and how much. After 5 years experience on this one drug alone, I now know which type of Imigran to pick in which situation.
It was a very steep learning curve for me. I am sure you will find out what works for you.
Timing, dosage, mode of delivery are all absolutely vital with triptans - this is the difference between failure and success in this drug.

Great to hear it works an good luck with it.

Cheers, Ben.

Posted in just how far can you go on 09 Oct, 2011 - 6:09 am

Hi to Alex and all,

Nice to see you got some relief Alex and from the health system too.
I knew all you had to do was get the right piece of paper to land on the right desk and you would have some treatment. That is more than half the battle for CHers...
I am glad you were able to "bust" this cluster by modern medical means rather than trudging across the tundra, mile after mile, looking for fungus...
Number 1 lesson here for all readers - Medical "Specialists" have far more experience and training than us and for the most part are worthy of their titles.
(with the occasional exception)
This doesn't mean we should stop double-checking their work, but perhaps a few more of us should present in front of said "specialist" before leaping to any "googled" conclusions in the future.

Just an idea...

Cheers, Ben.

Posted in Circadian Solstice??? on 07 Oct, 2011 - 1:27 pm

Hi Alan,
It looks like your attacks may be light/dark, Hypothalamus, Melatonin sleep/awake cycle things like mine. I get a lot of headaches under 1 hour after I go to sleep, no matter what time of day, the darkness of shutting my eyes seems to set them off, so I don't sleep during the day if I can help it.

I know it can be bloody difficult to contemplate food with an attack coming on, but some of these Nurofen, Voltaren and even Aspirin are real gut burners on an empty stomach. They will make you sick as a dog in combination. I throw my 3 aspro clear into a glass at the start of an attack, then stuff 3 or 4 dry cracker biscuits down my throat before guzzling the aspro whilst washing down an Imigran FDT tablet, this seems to aid absorption (maybe) and definitely reduces the long term effects of any gut burners. A lot of those NSAID medications like Voltaren come prescribed with a label on the front that says "TAKE WITH OR SOON AFTER FOOD".
As a general rule, I try to do this with Aspro too, I do have very long term use in mind so I try to prevent any gut issues before they happen.

It was a shame I did not know about the gut dangers of Prednisolone before I recently got a stomach ulcer burned into me from it. Simple fix though - stop the Pred, take Nexium for a couple of months (which I have now) and it heals itself.

Good luck with the Aspro Alan, always remember to mention it to Doctors and Specialists especially if they are prescribing new medications, it has many risks associated with simple things like dental work or surgery, blood clotting and is contraindicated with many other drugs.

Cheers, Ben.

Posted in Nerve stimulation or Deep brain stimulation on 07 Oct, 2011 - 1:14 pm

I am on the public health system's elective surgery waiting list for the implant.
Might be 3-6 months, might be years, I don't know. My first one will be a trial unit that is left in for 7 days. I will have to wait until the elective surgery slot becomes available in the public system, this does not mean that there will be an implant available at the time, that is a separate wait altogether, as I understand it.
A few planets have to align in the health system before I get the call, I could get as little as 48 hours notice to go into surgery. I could also wait 2 years+ for the implant to become available, who knows really? Its up to the vagaries of the health system...

Cheers, Ben.

Posted in Nerve stimulation or Deep brain stimulation on 06 Oct, 2011 - 11:04 am

Hi to all,
I am lined up for an Electronic Nerve stimulator implant.
It is subcutaneous, reversible and a minimally invasive Neurosurgical procedure.
The main risks are infection, rejection and inefficacy.
The possible benefit is a reduction in CH pain with the possibility of near remission pain levels. (Ask Matt - "Silent Planet" about these, he knows a thing or 2, certainly more than I do.)

All things considered, a good risk/benefit ratio in my CH condition, I think.

It is important to make the distinction between deep brain stimulation and a simple subcutaneous electrode. When I spoke to my specialist and he realised that I thought I was lined up for deep brain stimulation - he was horrified.
He said they don't do that sort of thing much anymore in CH, it is very risky and has no real proven efficacy in CH, nobody has built up enough experience with this procedure in CH yet. It is reserved mostly for those with Parkinson's disease and other motor neurone diseases. I got the distinct impression from my recent discussions that some of the Neurosurgical procedures used in CH in the last 20-30 years have gone the way of outmoded procedures like the lobotomy, luckily for us...

By all means, discuss this with your specialists, but I would be running in the opposite direction. I have watched a complete deep brain electrode insertion operation live for Parkinsons. The patient was awake the whole time and reported remarkable relief in his condition, but Parkinsons seems to be better understood than CH does.
It was some very serious and risky surgery indeed, performed by a team of highly experienced Neurologists in a US hospital set aside exclusively for Neurology.
We have buckley's chance of getting hold of that level of resources, skill, collective knowledge base etc, here in Australia. Still, that was a couple of years ago, they are probably doing this op during lunch breaks by now...

I am going for the less invasive methods first, you always have the more dramatic options left for later.

Cheers, Ben.

Posted in Circadian Solstice??? on 06 Oct, 2011 - 10:34 am

Hi to all,

There is enough proof that our location in relation to the Equator can effect our brains dramatically. Latitude is identified as a probable trigger in another brain disorder - SAD.
Vitamin D is also mentioned in SAD research.
Similar to CH, I believe it is a disorder of the Hypothalamus, but there seems to be as much mystery around solving SAD as there is around CH.

Thanks Barry for taking the time to try to make some sense of it all for us CHers.
The reason I started this thread was the hope that some common theories or ideas would emerge from said fog! I am hoping to keep an open dialog on Latitude, Hypothalamus function, Circadian Rhythm and CH etc, etc, for some time yet, this feels like it could be the key to solving individuals CH conditions.
Some brain/"Latitude" related reading for those interested:

Geography and Seasonal Affective Disorder (SAD)

A Matter of Degree
In tropical regions close to the equator, cases of SAD are extremely rare. In fact, almost no one who lives right around the equator (from 0 to 29 degrees north or south of the equator) suffers from seasonal affective disorder. However, once you travel 30 degrees away from the equator, either to the north or south, you begin to find statistically measurable occurrences of SAD. Researchers estimate that this condition affects:

1 percent of Florida residents
4 percent of Washington, D.C., residents
9 percent of Alaska residents.

While percentages of SAD increase as you travel further north or south of the equator, once you reach latitudes where SAD is very common, it doesn't seem to matter how much further from the equator you go. For example, the rate of SAD in Fairbanks, Alaska, is about 9 percent, which is almost identical to the incidence of SAD in New Hampshire.
Although studies are still being conducted to figure out the exact number of SAD sufferers, researchers estimate that between 2 percent and 6 percent of Americans suffer from moderate to severe SAD. An additional 10 percent of people in the United States may suffer from a milder form of the winter blues.

The whole article:

From wiki's "Seasonal Affective Disorder" article:

"Another theory is that the cause may be related to melatonin which is produced in dim light and darkness by the pineal gland, since there are direct connections, via the retinohypothalamic tract and the suprachiasmatic nucleus, between the retina and the pineal gland."

I hope the boffins are onto something here...

Cheers, Ben.

Posted in just how far can you go on 04 Oct, 2011 - 6:39 pm

Nitroglycerin, Yay, of course....
Why did we not use this to trigger my attacks in hospital O2 trials rather than lousy warm, flat beer??
I have read that a non-CHer can effectively experience what it is we live with, not that I would wish it on anyone, but there are a few let's say - "less understanding" ex-employers out there who I could happily inject with Nitroglycerin myself...
I shall ask my CH specialist and Neurosurgeon about this as I NEED to establish genuine efficacy in this implant or ditch it and move on to the next idea.

Maybe there is a really good reason we did not use Nitroglycerin. Just because it triggers attacks, does not mean we can abort these particular Nitrate-induced attacks with a drug like Imigran and then establish 100% proven efficacy in that drug. My specialist wanted to treat a genuine CH attack, an alcohol induced one was not the same type of trigger and thus, not the same type of CH. It was a second choice for us at the time. If for example, the plasma concentration of Nitrates outlasts the effects of Imigran (I don't know), what kind of CH are you left treating then? A Sumatriptan rebound, Nitroglycerin induced after attack? It could turn into a pin-the-tail-on-the-donkey exercise quite easily!
I dunno! I am not playing semantics here with treatment ideas either, it is just that the IHS and my specialist are so damn specific about exactly what type of CH they are attempting to treat and how I got it. My CH triggers seem very relevant to my Doctors.

Thanks for the tip Shell.

Cheers, Ben.

Posted in Does anyone bleed from their affected eye?? on 04 Oct, 2011 - 6:22 pm

Hi Shell,
Right side CHer here. Blood from right ear is a semi-regular thing post-attack the last 2 or 3 bouts (years). I had it checked out, nothing to report. I used to get blood noses a lot, both sides, no CH corelation. Best thing about a blood nose for me was that strangely, I have never had a CH attack within 24 hours of a nose bleed, no matter which side either. I have my own thoughts about my nose bleeds being some kind of pressure release valve. In 1996 I had 9 months of really bad blood nose episodes - daily. This is also the longest period of natural CH remission I have ever enjoyed. Coincidence or not? Who knows...

Eyes.mouth are fine.
Sorry Shell, without digging through all your posts, has Cory tried the nerve stimulator implant yet? Seems to me to be the least invasive Neurosurgical option for treating CH.
I am lined up for one soon, will keep the board posted.

Cheers, Ben.

Posted in Imigran MKII injector reliability issues? on 04 Oct, 2011 - 6:12 pm

Hi to all,
Today I had a chat with a Gentleman who has Diabetes. He showed me his injector pen for self-administering insulin.

It had an adjustable dosage mechanism like the one in the wiki picture. I believe his pen contained 260mg of his active drug, he was able to "prime" the interchangable injector tips with 2mg of the drug, then accurately administer his own dosage of 10mg.

I note that a few Imigran injection users have worked out their own dosage adjustment mechanisms, most of which are undesirable.
Does anyone know if this insulin pen technology is adaptable to Imigran?
It is no great engineering feat to put Imigran in the tube rather than insulin.
Then we could select a dose that suits us and one that successfully aborts the attack, example 4mg.
We would possibly use less of this very expensive drug, dial in on exact required amounts for aborting CH in individuals and probably reduce the incidence of rebound CH attacks from Sumatriptan use/overuse. I know 6mg is too much of the drug for me, it always works, but it is very strong. I would like to be able to dial in my dose of Imigran on an as required "per attack" basis.
I am sure it would vary widely from as little as 1mg to 6mg, should the technology become available.

Proof the technology exists, just needs to be applied:

Cheers, Ben.

Posted in Pain Tracker scale. on 04 Oct, 2011 - 10:00 am

Hi to all,

Great to hear Alan, blood thinners are probably one of the most beneficial and most ignored drugs used in CH. I know the mechanisms behind Aspirin are not strictly blood thinning, my specialist explained a very complex series of events the happens when we use Aspirin. He did go on to say that it was not entirely or strictly true that Aspirin was a "blood thinner". It's mechanism of action was pharmacologically too complex for me to grasp. But if you have a look through some of the literature on Aspirin that I have just seen, we are talking: " No significant differences were seen as compared to triptan medication", Hypothalamus regulation, headache relief and possible long term preventive benefits in CH. This has got to be important stuff for some people out there.
I hadn't done my research before on Aspirin, I just used it for 30 years and it worked. Looks lke I was onto something after all. After what I just read, my previous statement about Aspirin being "Overlooked" is an understatement. It looks like a bloody CH wonder drug, why aren't more CHers taking it????

This may explain what my specialist was telling me better than I can:

Here is the lowdown on Aspirin - fascinating reading if you are considering it as a treatment option in CH:

A small excerpt on Headache management using Aspirin lifted from the wiki article on Aspirin. I think this is of some signifigance to CHers:


Aspirin is a first-line drug in the treatment of migraine, bringing relief in 50–60% of the cases.[19] When used at a high dose of 1000 mg (as compared to 275–325 mg when used as a pain killer or 81 mg as a antiplatelet therapy), no significant differences were seen as compared to triptan medication, sumatriptan (Imitrex)[20] and other painkillers such as paracetamol(acetaminophen)[21] or ibuprofen.[22] The combination of aspirin, paracetamol (acetaminophen) and caffeine (as found in the OTC brand Excedrin) is even more potent. For the treatment of migraine headache, this formulation works better than any of its three components taken separately,[21] better than ibuprofen[23] and better than sumatriptan. Similarly to all other medications for migraine, it is recommended to take aspirin at the first signs of the headache, and it is the way these medications were used in the comparative clinical trials.[24]

Aspirin alleviates pain in 60–75% of patients with episodic tension headaches.[25][26] It is equivalent to paracetamol (acetaminophen) in that respect, except for the higher frequency of gastrointestinal side effects.[26] Comparative clinical trials indicated metamizole and ibuprofen may relieve pain faster than aspirin, although the difference becomes insignificant after about two hours. The addition of caffeine in a dose of 60–130 mg to aspirin increases the analgesic effect in headache.[25][27] The combination of aspirin, paracetamol (acetaminophen) and caffeine is still more effective, but at the cost of more stomach discomfort, nervousness and dizziness.[28]

There is some evidence low-dose asprin has benefit for reducing the occurrence of migraines in susceptible individuals.

Cheers, Ben.

I am off to look into the merits of slow release Aspirin as a preventive taken daily.
I am thinking something like Cardiprin, a coated slow release, low-dosage Aspirin.
It just might keep the suckers at bay for a few days/weeks before I have to get the Imigran out again...

Posted in Posting Photo's on 03 Oct, 2011 - 10:36 am

"I'm Staaaaaaaaaaaaaaaaaaaaaaaaaaaarving" - Augustus Gloop - 1972.

Posted in Pain Tracker scale. on 03 Oct, 2011 - 10:32 am

Hi Shell and Alan,

I note the attempt at a "sort-of" Logarithmic scale over at Clusterbusters.
I still reckon the Richter-scale model best quantifies my pain.
Still, 1-10 is what we are presented with.
New NPS pain diaries for Pain Management Unit just came out, it still asks us to rate your pain on a scale of 1-10. Looks like we can rate our pain however the hell we like, the specialists, practitioners and nursing staff will nod "duly noted" and file our diaries away, never to be seen again.

Hooooo-friggin-ray! Someone tried Aspirin and it works!!!!
I wish more would try it.
Good to see you report relief from Aspirin Alan.
How long have you had CH before you tried Aspirin Alan?

I will labour the point until CHers have at least tried it.
30+ years of 900mg SOLUBLE Aspirin (ASPRO CLEAR) is the ONLY reason I am still here. Not only do I have my own experiences, backed by the medical opinion of a world leading CH specialist, but now 2 CHers from this site have reported relief from Aspro Clear - gotta be worth a try people.

Cheer, Ben.

Posted in Just wanted to say HI and apologise for my being MIA! on 30 Sep, 2011 - 7:49 pm

Good to see you back, thanks for the PMs, I haven't forgotten.
I hope we see more of you on here, that would be great.
Tell MIA to take a holiday for a while!

Cheers, Ben.

Posted in Untitled on 29 Sep, 2011 - 7:23 pm

Relpax or Eletriptan:

Another "Triptan" abortive vasoconstrictor. I had a quick look through the datasheet and the slant in wording toward Migraine treatment leads me to believe that a tablet form of this medication may be slower acting than its cousins. As far as Triptans go the fastest acting has to be Imigran injections, but these can be hard to get and expensive depending on where you are and who you know.
Imigran also do an FDT (Fast dispersion Tablet) that acts in me in about 20-35 minutes.

There are a lot of triptans and a lot of vasoconstrictors.
Trick is to find the one that works for you and get it into you as quick as possible at onset of attacks.

Also, if this one works - if it ain't broke don't fix it.
You may not even need Imigran mate.
Nice to hear something working!

Cheers, Ben.

Posted in just how far can you go on 29 Sep, 2011 - 7:12 pm

I face the same problem. I am thinking of guaranteed ways to induce a CH attack then abort with the implant. I have 7 days to show efficacy, or I won't get a permanent unit installed. I am thinking alcohol, dehydration, sleep deprivation, fasting, iregular sleep as triggers to see if the implant works. They have all worked in the past as triggers and are things I avoid. All I have to do is do everything wrong, maybe smoke a cigarette, I don't know...
I have read that a CH attack can be induced in a non-ch patient by IV Nitroglycerin. Maybe I can investigate Nitrates as a way to trigger an attack - I really need these attacks full on for an as yet, unknown 7 day period.
It will be interesting, in a way I hope I am in full swing when they do the 7 day install.
I would gladly go for 7 days of 11s with the implant unit in me, just to know if it works or not for sure.

Cheers, Ben.

Posted in Dont get ripped off on 29 Sep, 2011 - 7:01 pm

Thanks for the timeless message Barry.
If people paid the same amount of due diligence to their own medication intake and drug contraindications as they do a $20 discrepancy at the checkout, a lot of CHers woud be a lot better off. Buyer beware is the moral here, scams are being invented and executed faster than you or I can post warnings about them. This has been the same since the beginnig of scamming. I tell you one thing, stealing your ENTIRE indentity through skimming information is far more damaging to the victim and can be done with almost as much ease as this little scam you are onto. Ripping you at point of sale for $20 is obvious, accountable and noticable, a grinning employee may have just relieved you of your personal identity and then onto establishing credit cards in your name etc, etc. The extent of fraud is only limited by the imagination.
Even these door to door salespeople for utilities companies have been obtaining information by fraudulent means. One asked my Mum for a look at a power bill, nobody agreed to, or signed anything. Next thing I know she gets a power bill from a different provider - no contract, no consent, nothing. Her personal details were hijacked and used for commercial gain. We had to fight it just to put it back how it was, with us as the assumed guilty party...

I would be far more concerned about waking up one day, as a friend of mine did - and finding your bank account cleaned out by a card-skimmer who worked as an employee - just like the checkout at a supermarket... $3500 poorer and it could have been much worse. Scams are everywhere, from the fuel you put in your car to the food you eat.
Times are hard, the pickpockets are back...
Look sharp people!

Cheers, Ben.

Posted in Untitled on 28 Sep, 2011 - 10:27 am

Hmmm, this is looking problematic indeed.
The IHS lists (I think) many hundreds of headache conditions under one umbrella "Cephalgia". With so many different causes, I agree with StPeter, we sure are going to have a hard time nailing down a name that suits everyone's condition.
Then we have Barry's ideas around a CH being a symptom of a knackered Hypothalamus.
Then my own theries about light/dark cycles.
If a concensus amongst patients is eventually reached on a new name, who will listen anyway?

So many angles of attack, I just don't know.
I am outta ideas.

Cheers, Ben.

Posted in Untitled on 26 Sep, 2011 - 7:42 pm

Hi Dave,
Just checked up on Anagraine:
It appears to be Metoclopramide (Maxalon) and Paracetamol (Panadol).
Maxalon is an anti-nausea drug, it is there to stop you from vomiting.
Panadol won't touch CH. So "Anagraine" I can see being pretty useless for headaches, you can get Maxalon by itself for Nausea if required.

Nurofen Zavance, Panadeine extra and Voltaren Rapid all together will be a gut burner in the medium to long term. You are probably also doubling up on Paracetamol and overdosing. 1000mg per 4 hours, Max 8 X 500mg tablets per day for anything containing Paracetamol. I always say try 900mg of SOLUBLE Aspirin (Aspro clear) at onset of attack, as fast as you can. I have been doing this for 30 years, it still works well. Aspirin will thin blood and let it drain the pressure from behind your eyeball, then reduce pain. Check with a Doc on that one.

Sounds like you need to present in front of another GP and find a different specialist. You need clarification of your condition, scans and the correct CH diagnosis from a CH aware GP/specialist. If you have had some success with Cafergot (a vasoconstrictor) then you should probably try Imigran (Sumatriptan). Imigran is available from a GP as a 50mg fast dispersion tablet (FDT), a nasal spray and injectable form. This is an abortive drug - to be used on a "per attack" basis, it will kill the headache in most cases.

Finding a preventive will be more of a long term challenge for you.
Verapamil, Lithium, Sodium Valproate, etc. There is a list of many, many drugs that you could try. Finding a preventive drug that works for your condition can be long and challenging. You can be held back severely by a specialist's lack of CH knowledge. I don't know Sydney, anyone got a good Neuro/PMU or CH aware specialist/GP in this area????

If you find a knowledgable person (specialist) to supervise your drug trials and move through them pretty quickly, you should have some relief relatively soon.

Run any ideas past a doctor first, I am not a doctor!
Cheers, Ben.

Posted in Handbook of Clinical Neurology - Headache 2011 on 26 Sep, 2011 - 10:53 am


$31.50??? - where?
I have looked everywhere to obtain a legitimate hard copy of this book.
It does not seem to have been made comercially available. My searches for it a few months back turned up nothing for sale. I am quite prepared to pay for literature if it is obtainable. I would love a hard-copy on my reference shelf.
But when the Medical profession chooses to release this sort of info to practitioners only, I get a bit annoyed. This is classic withholding of information. We have the CH attacks, we are the ones who need the reference material to educate ourselves. If anyone can point site users and myself to a retail outlet (online or otherwise) where this book can be purchased I would gladly buy one.

I should point out that any link provided to a data sheet for medication, or a clinical trial outcome is technically someone else's intellectual property. To cut and paste a clinical trial outcome on the site is probably a copyright breach of some sort, but we all do it to help manage CH. I thought copyright was not an issue here...

Please give us a link to a copy we can buy, or someone tell me why I can't re-post the previous link to this document. I have just looked on Ebay, 1 listing ended.
Dead sites and links everywhere when I look for this book.
It does not appear to exist for sale anywhere.
The top ten search results on Google are free downloads of this book as a pdf.

But I found some more info about it here on this "forum" for those who are interested:

Roger, I am not using your site as a file-sharing/hosting area or encouraging bit-torrent or ilicit activity at all. Just trying to hook CH patients up with timely and accurate information. If the publisher chooses to make the work unavailable for Patients to purchase then our research options are limited indeed...

Good luck and happy reading people.
Cheers, Ben.

Posted in Handbook of Clinical Neurology - Headache 2011 on 25 Sep, 2011 - 6:59 pm

Has the link been pulled already? That was quick...
Apologies if it caused any inconvenience to this site's admin and moderators.
I am not 100%, but I think I did include the link and test it myself.
Maybe I forgot to paste it in, I don't know...
I just provided a link to a public site, these sites make it clear that users take it upon themselves to go ahead and download any documentation or content from any site.
If I have omitted to provide a link and one is required, please let me know.
If site admin or a moderator had to pull the link for whatever reason, please PM me, I will gladly never post anymore links to these site if that is what is the right thing to do.

Cheers, Ben.

Posted in The story so far! on 25 Sep, 2011 - 6:43 pm

Check this out Chris:

It is a 3 page case study/trial outcome paper on Occipital nerve stimulation in CH. I know you are not lined up for a stimulator, but this article explains how the main nerves affected by CH run down and attach to C1-C2 and their signifigance in CH pain. This is the research source for my aforementioned link between major nerve pathways, the neck and relevance in CH treatment. It may give you another angle of attack with the neck condition/CH relationship.
I would highlight or copy the relevant section, but for some reason I can't copy from this pdf.

Great to hear you are onto quality sleep.
So many CHers underestimate the importance of routine and Circadian Rhythm. That's another topic that gets discussed a fair bit on here.

Cheers, Ben.

Posted in Handbook of Clinical Neurology - Headache 2011 on 25 Sep, 2011 - 9:36 am

Hi to all,
I know I have laboured the point and a few of you may have seen this link buried in the forums somewhere. From time to time this Ebook becomes available through file-sharing sites. It has popped up again. (Yes Heather this is the big one).
This is "The Handbook of Clinical Neurology - Headache 2011 - VOL 97"
It is about the most comprehensive document explaining what Western medical science knows and does not yet know about all things Headache.
Including CH.
This text book contains excellent explanations and diagrams of Vasoconstriction and Vasodilation. It explains how CH is thought to occur, using the lateset research and imaging techniques. It covers 800 pages of headache conditions and treatment options.
It has answers to most questions any CHer can come up with.

A vital reference book for any CHer to have at their fingertips.
Get it while you still can, these links are short lived at best.


Cheers, Ben.

Posted in The story so far! on 25 Sep, 2011 - 9:09 am

Hi Breakingpoint,
From what I understand, any form of responsiveness to Indocid is a good sign. I am pretty sure Indocid is used to correctly diagnose CH (I trialled it to rule out other (organic?) headache conditions and isolate/diagnose CH correctly). Indocid will generally offer Zero benefit to those with text-book CH conditions. If your headache condition responds at all to Indocid, then there is a chance that it may be a variation on CH. Here are a few examples if Indocid responsive headache conditions:

Interesting, I forgot that I had Ross River virus found during a routine blood test in 1992.
I have had CH all my life, but I must say - coincidentally right after the virus my headaches got a lot worse. Ross river virus was a real bitch, I think I am still fatigued nearly 20 years later. It sure did some permanent damage I reckon...

A responsiveness to Deseril is a good sign, it does indicate that Vasoconstriction possibly seems effective in relieving your head pain. There are many other Vasoconstrictors out there that may help. All the Triptans and Ergot-alkaloids for a start.
If Deseril worked then Sandomigran (Pizotifen) may be worth a shot too.
If this works, then blood thinnig may work too.
I take 900mg of soluble Aspirin (ASPRO CLEAR) at onset of attack. Tried and proven method of 30 years! This will generally knock out anything under a 4 on my pain scale. (Sorry Kip...)

There is another approach where drugs are used in an attempt to keep the blood vessels in a permanent state of Dilation - thus preventing them from Dilating any further and theoretically, no CH. Verapamil and Diltiazem are both Calcium channel blockers and have proven efficacy in CH treatment. They are thought to work on CH by this mode of action.

Like I said before, I think Endep is useless for CH.
Painkillers like Tramadol won't touch it.
Real Schedule 8 opiods won't touch CH usually, I doubt the synthetic ones (Tramadol, Capadex etc) would have any benefit. I take Atenolol for heart arhythmia. I note that this drug is sometimes prescribed for use in Migraine. It is a beta-blocker for the heart. I noticed a marginal improvement in Migraine, CH shadowing and residual head pain/sensitivity between attacks after going onto Atenolol. Totally unpredicted and unexpected minor benefit, but I think Atenolol helps a bit. It sure keeps that heart rate below 70bpm and the blood pressure within normal range, this has to be a good thing for during CH attacks.

If the CH attacks are doing your head in mate, than maybe some intervention with Prednisolone would be a good idea at this point. It has its place if you are about ready to harm yourself, I hope not! Be very careful of the Pred. Use it as an absolute last resort.
It will buy you some relief, but there is a huge list of side-effects and complications.
Coming off the stuff can trigger the worst CH rebound attacks I have ever experienced.
Overall, with Pred I usually get a short break from CH, about 3 or 4 weeks.
The decreased bone density, hair loss, weight gain, adult chickenpox (again...) and a free stomach ulcer have all put me off the Pred for good.
The headaches still come back after the Pred is finished and we are all back to square one.

Mate, Indocid especially and Deseril too are pretty serious gut-burners.
I would be surprised if you came out of all that Indocid and Deseril treatment with your gut unscathed. I would recommend getting yourself in front of a specialist who understands the Triptans (like Imigran) or the Ergot-alkaloids. This sounds like a trial worth repeating. The mode and timing of delivery with triptans is as important as the drug itself. This is the difference between success and failure with Triptans or vasoconstrictors in general. I note you have tried Imigran (Sumatriptan) "Tablets" and a Nasal spray. A lot of people report no relief from these.
The nasal spray works too slow for CH, it may work better in Migraine, for which it was designed. Imigran make an FDT (Fast Dispersion Tablet) in 50mg that I find quite effective. Imigran also comes in injectable form - this really works for me.
I think some of the vasoconstrictive CH abortive drugs may help your condition.

Then there is another bunch of options with preventive drugs like Verapamil, Lithium etc. Then there are the Anti-convulsants (Epilepsy meds) - Sodium Valproate, Topamax, Keppra, Lamotrigine etc.

I think you have many options left to explore.
Finding a tuned in specialist will present the hardest challenge here I think.
Good luck with it, I hope I have given you a few ideas.
Remember to run any of them past you GP before you try them, I am no Doctor!

There is hope around the corner.
We are waiting on CGRP receptor antagonists, which offer the promise of a daily preventive, without the vascular dilate/constrict cycle that causes us so much trouble.
There are also new generation blood thinners around the corner.
I know CH sucks, but now is the best time to be alive with CH, we have so many options to treat it these days.

Oh, I almost forgot, there is a strong link between C1-C2 vertebrae in the neck and the Trigeminal and Occipital nerves. Here is the I.H.S criteria around Neck problems as either a primary or secondary cause for headache conditions:

Some of my reserach on the implant shows that the nerves affected in CH (Trigeminal and Occipital) run from the front of your head and somewhere behind your eyeball, right down through the base of skull and have some connection/relationship to the positioning of C1-C2. This may or may not be something to do with nerve impingement in the neck, I am unsure.

I must admit I am growing weary of hearing how some others on the site (not implying you mate at all) want to "end it all" after having allegedly "tried everything". I have been there, but I would be surprised if any of us had tried everything. There are always more options, one just has to dig harder, ask questions, self-educate and press on with it. 30 years of intractable CH and 60+ drug trials here. I know no different. I still get out of bed each day, help others with CH and research the new treatment options.
I put more irons in the fire, bait more hooks...
This is the only way we will ever crack this thing - persistence and tenacity.

I will be going in for an electronic nerve stimulator implant soon. Fingers crossed this one works. CH does govern my activities, it does limit my potential drastically. But, even with the year from hell and 6 months straight (a short CH bout for me) of up to 7 attacks per 24 hours, in all this I have still managed to build an acoustic guitar from scratch, it is looking nice and will be finished soon. Not an easy task under the duress of CH and drug trials...

I would rather work to find hope in all this than wallow in my own self pity. I find new hope everyday in my CH research.
What other choice do I have really?

Cheers, Ben.

I remember Echuca, had holidays there as a child, nice beautiful town. I could think of worse places to have CH, like my place (right next to an airport, its like "The Castle" around here with plane noise...)

Posted in Peripheral Nerve Stimulator on 23 Sep, 2011 - 8:00 pm

I am lined up for one too, but the person you are looking for is probably Matt (Silent Planet) he just had his second attempt removed.
The thread we were discussing the implant on was under "Medications and treatments" and the thread was called "Lyrica", unrelated, but the thread strayed off topic, it is hard to find.

Good luck, Ben.

Posted in Anyone else's CH go to eleven? on 22 Sep, 2011 - 11:59 am

Hi to all,

Looks like we might need a logarithmic scale like the Richter-scale for this one:
Lifted from Wiki:

"Because of the logarithmic basis of the scale, each whole number increase in magnitude represents a tenfold increase in measured amplitude; in terms of energy, each whole number increase corresponds to an increase of about 31.6 times the amount of energy released, and each increase of 0.2 corresponds to a doubling of the energy released."

Anyone see a common thread here?
I think we need Cluster magnitudes quantified on a scale.
This may also present an opportunity for a change of name.
"Sub-orbital head earthquakes" perhaps?

Cheers, Ben.

Posted in Untitled on 21 Sep, 2011 - 10:24 pm

A couple more pdf resources, have a browse around the sites, there is a heap of stuff on Headache. Just follow the prompts, use normal (free) download speeds and wait through the 30 second count downs. It is a bit of a trial, but worth it for these documents.
Pretty safe too, I have no PC security troubles looking through these file sharing sites.
I am not sure these links will work, but give em a try!,g/An-Atlas-of-Headache.html


Posted in Untitled on 21 Sep, 2011 - 10:09 pm

This document explains Ch about as well as it can currently be explained.
It also contains nearly every existing terminology for headache conditions.
It may offer some ideas on a name.

Here is a reasonably rare opportunity to grab the latest and probably most comprehensive document on Headache conditions that is currently available.
From time to time the link appears and the file becomes available.

It is in pdf format.
A handy tip a friend showed me when searching any document or file - CTRL+F which is the "FIND" function. After you have opened an 800 page pdf like this one, you may want to zero in on the word "Cluster" a bit faster rather than sifting the whole document by eye. CTRL+F is a handy way to search for an individual term within any site, forum, thread, pdf, word document etc etc. A small search window will pop up after you press CTRL+F and you can enter and term e.g. "Brain".
Sorry to those who have known this for ages...

Get hold of it while you can.

The Handbook of Clinical Neurology Volume 97 Headache

Cheers, Ben.

Posted in Sp02 levels (oxygen levels) on 20 Sep, 2011 - 9:03 am

Welcome Neil,
Just been checking out a lot of O2 stuff this week (been hooked up to a lot of machines lately). My O2 level sat on 99% - 100% whilst I was in hospital, I guess my lungs are OK.
My Mum's goes as low as the 60s sometimes, courtesy 40 odd years of smoking...
My specialist/nursing staff tell me that part of achieving a high O2 concentration when using O2 as an abortive is also about getting CO2 out of the body.

(I know you are not making reference to O2 as an abortive here)
O2 does not abort my CH, never has unfortunately.
But I always sleep with a fan on and the window open, even in 2 degrees.
CO2 build up in any room is my enemy. It will trigger an attack quite easily.
I can't sit in a new car with the window closed.
I can't be near other people in close quarters for any length of time, the CO2 build up is unbearable. A short trip in a stuffy lift with flouro lighting is enough to set me off.
Part of the re-breather O2 mask setup (I believe) is about making sure exhaust gases (CO2) are expelled and not re-inhaled.
(Chime in here Barry!)

Maybe it has something to do with inadequate ventilation?
I also noticed my O2 level dropped a small amount when I lay on my left side, but it returned to 100% when on my right side, go figure!
Maybe it is a Cardiac concern?

I hope you don't smoke mate!
I would definitely be looking into CO2 build up, but I don't know much else about O2 levels, sorry Neil.

(I just read your other posts and now note you are an experienced O2 user. Sorry for commenting on this, I am more of a pharamaceuticals person. Just tryin to throw some ideas around!)

Cheers, Ben.

Posted in My Introduction on 20 Sep, 2011 - 8:35 am

Welcome. Oh how I wish it was a parasitic condition!
Then we could all go to a tropical disease clinic and have the bastards removed!

Yep, done Endep and the rest of the "tryptylines" - all the cousins of Endep. It did jack for CH or my depression. Neither did the other 20 odd anti-depressants I was prescribed. As it was explained to me at the time, the use of anti-depressant medication in CH was "off-label" or "experimental" (Basically when a drug is being used to treat any condition other than it was originally marketed/approved for use).
I think the general idea is to alter ones perception of pain by using anti-depressant medication to give our psyche a break from the CH hammering. It can provide minor and temporary relief.

Endep was prescribed to me in an attempt to help with pain management. Endep, in my opinion is a specialist's best guess at solving CH straight out of "The A-Z of Neurology" manual. I grew tired of refusing yet more boxes of the stuff. If anyone implies or has experience that shows CH will cease outright after using endep - please point me in the direction of the clinical trials, I want to see this... I think Endep is useless, anyone else?

Careful of getting on this Anti-depressant merry-go-round mate, it can go on forever. Especially if you are not depressed, I wasn't. I just had CH. Then all this happened. I have done over 60 drug trials in 30 years of CH. A large number of those trials were Neuros stuffing about theorising over the use of anti-depressant medication to treat CH outright. Guinea-pig stuff. They can offer no proof statistically or otherwise that anti-depressants will help manage CH, except psychologically. Personally for me, the bottom line is - Anti-depressants have their place in CH treatment. If you are clinically depressed or feeling depressed by CH and the lifestyle it inflicts upon you, I would recommend talking over anti-depressant use with your doctor/specialist. I realise that CH is a major downer and a lot of CHers will need anti-depressant medication to get them through, as I have done. I note that depression is a condition in its own right and co-exists (Unsurprisingly) quite frequently in CH patients.

Although the frontline CH medications and their modes of action are relatively well understood in the clinical sense, I have my doubts about the use of anti-depressants in CH treatment, other than for treating underlying depression itself. Science understands these medications a lot better than it understands CH. My specialist and I have found SSRIs, SNRIs, MAOIs, TCAs etc. to be counterproductive for my CH treatment. After all, we are trying to attenuate a complex series of Neurotransmitters, this is not well understood. We ended up "chasing my tail" through a myriad of side-effects, contraindications and tolerance issues. It is a complex balancing act at the best of times and always comes back to the risk/benefit analysis.
Any prescribing Doctor should assess the potential risks against the benefits in his/her patient. There is such a thing as "Harm by prescription pad", a thing most GPs will do at some point in their careers. Anyone being prescribed anti-depressant medication for CH should sit down and talk with their GP/specialist about the risks/benefits of any new medication. In my case the side-effect burden, coupled with the total inefficacy of anti-depressant drugs has seen them withdrawn permanently. I have not felt better in years.

I speculate that any "Mode of action" or "effect" that an anti-depressant can have on a CH can backfire spectacularly. If a Neuro explains that a drug constricts veins and that will "sort out" the CH, they forget the rubber band effect - What happens as the drug wears off? What happens as we build up resistance and escalate dosages? We start to get dehydrated, constipated, sleeplessness, headaches etc etc. Then there's the rebound CH attacks to consider.
From medication or not? Nobody can say for sure without withdrawing said medication, leaving you with CH, depression and a brand new withdrawal/discontinuation syndrome to deal with! Too many variables come into play. A hard way to "nail down" just exactly what drug is effective for you I suggest?
All these side-effects play havoc with other medications that actually might work!

When all is said and done, I am 5 years out from beginning work with my current specialist and I have had many problems with drug tolerance and efficacy:

High liver counts
Cysts on my Kidney
Fibrilation and near death (Topiramate, Sodium Valproate, Dothiepin, panic attack interaction)
A stomach ulcer (Thanks Prednisolone)
Chicken pox (Thanks Prednisolone)
Permanent Heart Arrhythmia (Thanks to the moron Neuros who prescribe huge doses of Verapamil without adequate ECG, your turn will come Mr Neuro...)
Depression (after 60 trials wouldn't you be?)
Serotonin syndrome.
Benzodiazepine withdrawal.
Hypothalamus disorders (sleep time, body temp, issues)

I was really depressed too and had many, many anti-depressants due to lack of correct CH diagnosis and treatment. Once I found my current specialist and a pain management team, they introduced me to CH abortives yay! - Imigran Tablets, Nasal spray, injections), Cafergot, Ergotamine, Oxygen treatment etc. There are more widely used preventives available for CH, with clinical data to back their efficacy in CH. Lithium, Verapamil (and other Calcium channel blockers), Anti-convulsant (epilepsy) medication. Once I had correct diagnosis and treatment, guess what? I am not depressed anymore.

I have been 3 months plus without anti-depressant medication (Dothiepin, a TCA)
I have gone over a week off Xanax (for anxiety)
I have been left on Nexium (a reflux drug) to treat my stomach ulcer
I have been left on Maxalon (A nausea medication) for stomach ulcer too.
Still taking Atenolol for heart rhythm issues.
I have Soluble Aspirin 900mg, Imigran FDT 50mg tablets and Imigran MK2 Injections.
With this lot I manage up to 6-7 attacks per 24 hours for 9-10 months of the year.

I am not looking back.
For me, things could not be better.
I am on less drugs than I have been in a decade and you know what, 4 weeks of no CH and counting...
I am not tempting fate and "Going Green", superstitious I guess...

Anyone feeling depressed should check out the home page on this site. There are phone numbers there from SANE and LIFELINE for people who need to discuss or are concerned about their depression.

Cheers, Ben.

Posted in I'm going to get flamed over this but please try it! on 18 Sep, 2011 - 10:36 am

Jees Heather, I haven't even finished editing my post!
You read to quick or I write for too long.
The latter I suspect...


Posted in I'm going to get flamed over this but please try it! on 18 Sep, 2011 - 10:23 am

Be careful Shrek mate, one thing I learned on here real fast - There is always someone out there watching who knows more about drugs than you or I do. I can think of one person - my specialist for one...

Most of us have been "grilled" at some point over posting medical advice outright without some form of disclaimer. I know there are no rules or laws here for this. But this forum self-regulates pretty well. I feel it is timely, diligent, considerate and responsible to make any forum reader (who might attempt to use medical advice from the site) aware of the existence of possible complications from drug treatments. I know if I throw an idea out there even as basic as Aspirin, I always follow it up by telling site users to check with their GPs, specialists and research any new drug (and contraindications) themselves.
I believe in educated patients and their right to access the latest accurate medical information. Too many people end up dead because drug contraindications are not clarified by anyone. This is an unfortunate but very real problem that happens every day...

Basically, I always use the line "Seek medical advice" or "Check with your GP" when posting on drugs for CH. Drug tolerance, side-effect profiles and most importantly interactions/contraindications are of huge concern to most individual CH patients due to the nature of their multiple medication usage. CH, I think you will agree cannot benefit from a "One size fits all" treatment approach. So we must all do our own research to see what is appropriate for us, as assessed by us as individual patients in close consultation with medical professionals. I would loathe to think that someone goes through some of the near-death drug interactions I have experienced, because they blindly followed seemingly sound medical advice from a public forum.

I know Aspirin sounds tame and it comes from the supermarket, but in the wrong patient, mixed with the wrong drugs, it could be deadly.
Example: If I put up a new drug idea or treatment option, you will see the datasheet linked in pdf next to it, a clinical trial outcome (if available) and usually a wiki page so users can branch out and do their own research on a new drug treatment option.
Then patients can research their own drug contraindications - something I always encourage people to do. This is why Roger and I got the PBS and NPS tabs put up on the left in the first place. It saves me having to link every patient with info on their new drug!

In this case it was "sodium ibuprofen dihydrate" I believe.
I understand this is not standard Ibuprofen but a derivative, datasheets on OTC drugs seem harder to locate than PBS drugs. It is a starting point for patient self-research anyway...

This is Ibuprofen or "Brufen" the PBS scheduled anti-inflammatory drug, the main ingredient otherwise tweaked and resold as "Nurofen" in its various names and forms.
A good starting point for research on contraindications.

A link to the drug from which Nurofen Zavance was derived:
I note that it is contraindicated in patients taking Aspirin or other NSAIDs.

Other than that, I can't find much literature on Nurofen Zavance in CH treatment.
If past reserach is anything to go by, the lack of literature available on Zavance means that it probably is worth a shot! In close consultation with your health care professional, of course...

I don't have debates with Pharmacists anymore.
I have letters explaining my condition, the drugs I need and the unusual quantities required (Imigran) for my individual circumstances. These letters are the ace-in-the-hole when it comes to the uppity Pharmacist and their lofty platform of condescension. All debate ceases when I even mention showing a letter from my specialist, especially when they hear who wrote them for me.
I have never had to produce one, the mere threat of a world-leading CH specialist breathing down the phone results in immediate compliance with my (more than reasonable) requests for pain relief.
Every CHer should have letters like these. I keep them in case I find myself at a strange Pharmacy where they may doubt me. My 2 everyday Pharmacists are great - tuned right in on CH thanks to me.

For me, a "win" with a Pharmacist is a decade long understanding relationship with the Pharmacist, who knows and understands my CH condition - even if I had to train them on it. A "win-win" in fact. They don't hinder me anymore. I get my drugs and they get paid.
We all go home happy at the end of the day.
Who needs wars with Pharmacists when we have CH to deal with?
They are here to help, but there are a few younger ones who need reminding occasionally...

Cheers, Ben.

Posted in Untitled on 17 Sep, 2011 - 3:00 pm

Hi Matt and all,

I think "Cephalgia" is already the broad umbrella under which all headaches are classified.
I know this term does not distinguish CH outright from any other condition, but it at least removes the term "Headache".
I also think application of the term to our condition has been done, maybe we just need to popularise this, if the diagnoses are correct.

Cheers, Ben.

Posted in Anyone else's CH go to eleven? on 15 Sep, 2011 - 8:29 pm


Haha! I can't drink mate.
Last beer I had was in a ward to trigger an attack, then abort it with O2.
Didn't work.

I think you are right about the pain scale.
It just feels like a lie to me to overstate my pain level. I think I am going to have to. It's a hard one. I really should have had some stronger pain relief tonight, phewwweee - it hurts.
I know what you mean and I probably will say 8 next time and take whatever Narc they throw at me. After all, it is medically appropriate after an acute injury (not a chronic condition, a distinction I failed to make earlier today...). (Jeez this typing hurts...)
Maybe CH just hardens you up that much that you don't notice other pain.
The nervous system can only handle so much input before it will shut down, as in Barry's unconciousness, which I too experience.

I have broken bones and not noticed. I keep breaking little toes by stubbing them on things when staggering around at night. I have done them both at least 4 times each. This is not a chest-beating "look at my pain threshold" competition either. It has been a serious medical problem on occasion, no joke. I am waiting to find myself leaning on a red hot stove element or similar...
I have been burned by solder and irons and not noticed until much later.
I have injured many things badly between CH attacks to the point of thinking I am accident prone, when really my CH renders me incapable of preceiving other pain.
I have a bad back, neck and knees. They ache bad a lot of the time.
I know they are still there during a CH attack, but the ONLY good thing about a CH attack is that I can't feel my damn back anymore for a while.

It gives one serious consideration to hitting your thumb with a hammer during CH attack, surely unconciousness would be a win for CH and nervous systems all round, apart from the squashed thumb of course....

I have never had a barbituate or Narcotic given for CH, the opportunity has never presented itself to me. (I surely am not implying any weakness in anyone who has or does) Some would call this ineffective CH treatment or denial of pain relief, I call it entirely appropriate treatment for me. If I can blast any CH attack with an Imigran Injection, I don't need to go to the Schedule 8 drug cabinet. I think you will agree this is a good long term outcome for all concerned - especially my liver.

I am on day 7 of Alprazolam withdrawal after 2 years addicted to the stuff.
I have done a Valium changeover, as you have to, which is already tapering.
Got them down to 10-15mg per day.
I am doing well, no plans to go back there whatsoever.
Benzodiazepine withdrawal syndrome , especially from Alprazolam is bloody hard to do, it sucks.

I and my liver are retiring for much needed rest.

I am still interested to hear from Heather, StPeter, Matt and co, and anyone else I missed - on the 1-10 pain scale issues.

Cheers, Ben.

Posted in Anyone else's CH go to eleven? on 15 Sep, 2011 - 3:09 pm

Hi to all,
Yesterday I was working on some rear suspension on my Brother's car. It was on the ground, all 4 wheels still attached. No jacks, no axle stands, nothing. I was not stupidly working "Under" the vehicle whilst on jacks, so I thought it was safe. I have been doing this for 20 years with due dilligence and as a result I have never before had a jack related or car falling incident. A piece of the suspension holding the car up to the correct ride height failed (snapped) and completely collapsed. I was half under the rear fuel tank/bumper when this happened. The car fell on my chest but stopped 4 inches short of bottoming out on the ground.
I was able to extricate myself from under the vehicle.
I was very lucky to have not been killed. After a night of pretty intense rib pain, I went to hospital this morning. I figured the usual precautionary scans were needed and timely. (I really should have presented yesterday, yes I have been chewed out adequately over this). I am still awaiting CT results to find out if I have rib/cartilege or lung damage.

Having 400 odd kg of car dead-drop on your chest is bloody painful to say the least. When I presented at hospital today a nurse asked me to rate my pain on a scale of 1 to 10 - "With 10 being the worst possible pain you have experienced" she says...
So I said 4-5. I was in bloody agony, for a bodily injury anyway.
Still absolutely ZIP in the pain department compared to an average CH attack... I probably should have been juiced up with a narcotic for pain relief (something I have never had) but due to my low pain rating (the 4-5 that I reported), no further pain relief was forthcoming. I don't mind either. The staff repeatedly asked me if I wanted any pain relief, but I had my own Panadeine Forte for the job, so I refused other offers. The staff did their job really well and looked after me.

I suppose what I am getting at is:

- Should I have rated my own pain on a "Normal" scale (excluding my CH experiences) that I would have used, had I not been a CHer? (And risk lack of treatment)

- Should I take "The worst possible pain I have experienced" (CH) into account when reporting other medical conditions to nursing staff?
(Then you have to run a 1 on 1 tutorial on CH for the disbelieving nursing staff, again... This never works.)

The worst possible pain I experience is an 11 on the CH scale, as explained above in my first post. This has almost zero relevance to any other pain rating in any other medical condition.

Just because I am a CHer does not mean I refuse anaesthetic at the Dentist, I am no tough guy with a point to prove. I have had CH for 30 years for *@#$* sake! As you all know, there is no competition.

What's a person to do?
Lie and exaggerate to 8 out of 10 instead of a 4-5, just to receive what others would call "Normal" medical treatment and pain relief?
I just don't know.

Yet another failure of the 1-10 system in my opinion.
There sure is a mix up between 1-10 for CH and 1-10 for everything else. (Not specifically the Kip scale or CH related, just the 1-10 concept for quantifying PAIN)

Any thoughts?

Cheers, Ben.

Posted in Recent Research on Hypothalmic Involvement on 14 Sep, 2011 - 11:16 am

Hey! We should have this info under the "Circadian Solstice" thread, it seems to be the latest news on that front.

Cheers, Ben.

Posted in Anyone else's CH go to eleven? on 11 Sep, 2011 - 5:16 pm

"These go to Eleven"

Hi to all,
As CH patients we are often asked to rate our pain on a scale of 1 to 10. I realise this is important for treating Doctors, but I have always found it an annoyance to have to rate my pain by this number system. It seems manifestly inadequate to describe pain.

I have seen the "Kip scale" and honestly the first thing I did was to burst out laughing. I know another member on here who feels the same about this Kip scale. I don't know who "Kip" is, but I drew up my own "pain scale" years ago in an attempt to quantify my pain for my treating specialists. The Kip scale's 10 is about a 5 or 6 on my personal chart/diary.

One anomoly I notice and my main grievance with this system, is that it does not allow for an increase in severity of the condition over time.
If you have reported a series of "10s" in 2010, then all previous pain levels get exceeded by the next series of attacks - where do you go from there?

I go up to 11, which becomes the new 10 for next CH season.
Every year it gets worse. (I am over it, don't worry I am not going to jump like a lemming...)
I think this clip best anecdotally reflects my discussions with my specialist and my feelings about my headache pain going past a previous 10 and up to 11. Yes, I am a guitarist...

Cheers, Ben.

Posted in My Introduction on 09 Sep, 2011 - 12:01 pm

Amen StPeter!
It is very difficult to outline the exhaustive treatment processes without it coming out like a p*ssing contest. The lists are so long, it does look ridiculous, I know. When I initially arrived on the site, I very ignorantly presumed that I had a monopoly on CH pain experience. Pre-internet, most Doctors had reiterated this position to me, basically on the premis of the rarity of the condition. How wrong I was. Probably a product of 30 years of pristine isolation and misdiagnosis. I had never met another person who had heard of the term CH, let alone experienced one!

In my lifetime, I too have only come across 1 ex-sufferer, a dentist who experienced CH from ages 12-16, then they just stopped.
Lucky person he is!

When I read about Shrek having an MRI at age 12, I thought "You lucky bastard!".
I had to look back and see when Shrek was born, I could hardly believe it!
In 1988 at age 12, I too was given my first box of Panadeine forte for "Migraine".
Closely followed by "Lingraine" (anyone remember that one?)
But I don't think MRI was invented yet, or at least not widely used or available.
They did X-rays for CH - what a joke!
But we did rule out tumors and aneurisms etc...

Contests aside, the comparisons in our stories are very similar with the exception that Shrek was "Lucky" enough to be born in an age where people had heard of CH.
(Yeah, I know - I am calling a CHer lucky...)
He doesn't have to spend 15-20 years crawling the walls undiagnosed and unmedicated whilst seeking diagnosis and treatment. At least he knows its CH! (Sorry Shrek mate, I know this does not make your situation or CH attacks one bit easier to handle) From where I sit, having this diagnosis at an early age is a huge plus for your treatment options and psychological state. I wish I knew about my condition at that age.

This shows that CH diagnosis and treatment have improved dramatically from one generation to the next. This is about the rate of change that we can expect if we are to rename the condition - generational change.

There is the proof over the last 20 years that CH research is still going on and that hopes can be held onto for a CH cure. Lets hope the next 20 years go a bit better!

Cheers, Ben.

Posted in Psyclobin (hallucinogens as CH treatment) on 07 Sep, 2011 - 12:01 pm

Go for it mate. If it wasn't for the mighty fungus, we would not have Ergotamine - an ergot-alkaliod used as a vasoconstrictive CH aborting drug.

It certainly has its place in CH treatment - illicit or not.
I know when and where to find these (no I ain't telling...) but they have ZERO effect on my CH. In fact I think I triggered a month long Migraine, but that doesn't mean it won't work for others. Nearly every naturally occurring psychoactive substance has been synthesized in a lab these days. I am sure you can get medical LSD somewhere, probably not in Australia. Somehow I don't think the folks at the PBS would go for it...

Cheers, Ben.

Posted in Untitled on 06 Sep, 2011 - 5:44 pm

Oh Dear Shrek,
Cluster-Migraines... I like the other name, but I reckon pronounciation will be an issue, especially down in ER!
I can see you have been through a lot, but wait, there's more!
I checked out your drug list, there are many more you can try before you can rule out everything. I am roughly 60 drug trials in after 30+ years of this **** condition and we still find treatment options.
There is research going on and the ever present promise of a new generation of CH drugs around the corner.
I note the Alprazolam withdrawal dilemma. I just got down to 2 X 0.25mg per day for the first time in 2 years, addictive stuff mate.
My sympathies there. Despite your specialist's experience, I feel that there are more unexplored options left for you. There is some hope that there are options left for you, I see the advances regularly, it does happen. I hope you find something that works for you.

Back to the "Cluster-Migraines". I could try not to start on a negative note here, but this is precisely the kind of terminology or rather misconception I have battled frustratedly for 30 years. If no-one else will say it, I will...
Separation between the two conditions Migraine and Cluster Headache is at the very core of the terminology we are seeking to define here.

"Cluster Headache is a chronic condition of recurrent excruciatingly severe episodes of headache. Pain is far in excess of that experienced typically by patients with Migraine, and is incapacitating. Although most of us are familiar with the term headache, it does not convey the extreme intensity of pain associated with Cluster attack."
A quote from a leading CH specialist lifted directly from my medical file in reference to my diagnosed condition - Chronic Cluster Headache.

I think most CHers will agree that the term "Cluster Headache" does not adequately convey the severity of the condition, as my specialist pointed out to me.
Distinction between the two conditions is clear in the I.H.S diagnostic criteria for headache conditions. Treatments do overlap sometimes (Imigran), but approaches are very different.

Nearly everyone will experience a "Migraine" in their adult life at one time or another, or they know someone close to them who has. Everyone has a Migraine story about how they had to leave the party early etc, etc... Migraines are common.
Usually, for the majority of Migraneurs an over the counter NSAID tablet and rest will be sufficient and the headache event itself constitutes a minor annoyance. (I know the Chronic Migraneurs are out there too, Hi people!)

Very few people will experience a Cluster attack in their lifetime. For research, grants, petitions, media coverage, treatment protocols and a myriad of other reasons, I feel it is vital for public perception to see CH as a condition in its own right, not associated with the far more common "Migraine" headache.

If we want to get petitions off the ground and raise puiblic awareness of CH, I feel we need to ditch all associations with Migraine. (I am lucky enough to have Migraines too, it is a condition in its own right with its own diagnosis and treatment plan). Sorry Shrek for the baptism of fire, nothing personal, just clearing up this common misconception. It is a pet peeve of mine, sorry. This misconception alone cost me well over a decade of misdiagnosis and subsequent lack of treatment. Many others are in the same boat and are still currently fighting this misconception daily with their own headache conditions and treating Doctors. It is a sad indictment on how little our GPs and wider community know about CH.

This is why we need everyone to get on board to help raise CH awareness, no matter what we call it!

Cheers, Ben.

Posted in Untitled on 04 Sep, 2011 - 6:31 pm

I have been looking for something with some impact, a ring to it that conveys the severity, not much luck - with the kind of search terms I had in mind, all I can find are references to the Texas Chainsaw Massacre and the like...

Looks like this one is already gone - Exploding head syndrome:

Has anyone had their CH condition referred to as any of the following?
(lifted from this site:[

Raeder syndrome, histamine cephalalgia, histamine headache, sphenopalatine neuralgia, eye pain, severe headache, CH, Bing-Horton syndrome, Bing-Horton disease, Horton cephalalgia, migraine headache, Horton headache, Horton neuralgia, histaminic cephalalgia, cluster migraine, paroxysmal nocturnal cephalalgia, red migraine, erythromelalgia of the head, sphenopalatine neuralgia, migrainous neuralgia, Horner syndrome, tension headache, NSAIDs

An odd bunch of "terminologies" I think you will agree!
NSAIDs???? They are Non-steroidal Anti-Inflammatory Drugs - not headaches!
I wish it were as simple as a Histamine problem.
StPeter, do you think any of these existing names have any merit?

Cheers, Ben.

Posted in oxygen availability on 02 Sep, 2011 - 9:13 am

Anyone tried this O2 in a can?
I wonder if it is enough to abort a CH... I am not an O2 user.
It seems sufficient to halt altitude sickness in high altitude climbers, apparently they are selling this to climbers at the base of mountains before they climb. They also seem to be selling O2 as a recreational drug, which I am sure it isn't. If this misconception becomes popular, it could only serve to further frustrate efforts to obtain O2 for legitimate medical uses. Some Pharmacists think I get a kick out of Imigran, another popular misconception. I would rather staple my tongue to my forhead than have to use Imigran all the time... No fun at all.

Anyway - "O2 in a can":

This idiot doesn't help...

Yeah, I know Barry - this is not the correct setup, probably not enough concentration, no mask etc... probably just another online scam... But my CH specialist did mumble something about the existence of these years ago. I don't think for a secong that he was implying that these would work in my CH. However, I am thinking of obtaining one as a gapstop measure for my Mum, if she has breathing difficulties again (This is a regular thing ) maybe this would be good for the intervening 10 minutes before the ambos get there. They always put her straight on the O2. Different ailment I know and off topic, sorry.

Another idea bought to you by the know nothing brigade!

Cheers, Ben.

Posted in The latest for me... on 01 Sep, 2011 - 10:37 am

The pattern I see emerging here is the same one I experience.
Codeine and paracetamol do nothing for my CH.
Soluble aspirin thins blood and seems to help the blood pressure built up to drain away from behind the eyeball. Looks like Aspirin is the go for you then.
If panadol doesn't work, maybe just some soluble aspirin on its own would be enough.
I understand you really have to double-check everything you take because of the bubs!
A good idea to steer clear of the Imigran, I can't even begin to wrap my head around Imigran and how it might affect a feeding baby. Surely a devastating thing to have to consider at all and one thing I am happy to have no experience with whatsoever.
(not the bubs! Just the 'choice of drug' dilemma this presents you with!)
Please, please, please - I am no Doctor, always seek their advice!

In answer to your question: Imigran's active ingredient is Sumatriptan - fullstop.
Every mode of delivery is different (Spray, tablet, injection) and the dosages vary dramatically depending on which delivery you use. They are all eventually supposed to achieve the same thing - vasoconstriction, but the choice of mode of delivery is very important.
Generally you want to get it into you and working as fast as possible.
It is the difference between success and failure of the drug in CH treatment.
I have lost count of the number of CH patients who have dismissed Imigran as a drug completely, after having only tried a nasal spray. Only later do they try Imigran in tablet or injectable form, largely with great success.

All my recommendations are those of a fairly sheltered single bloke, I am sorry if I overlooked any other concerns, I have never had to take any one else's body into consideration when treating my CH. A very self-centred view on my part, sorry.
It must be so complicated for you. This reminds me what an insular environment I am in with the help of Pain Management Unit and being stuck on a disability pension and all...

I am thinking about (just an idea folks) trying or at least asking my GP and specialist about Aspirin as a preventive drug. There are some slow release Aspirin based heart drugs mostly aimed at those who have ongoing heart conditions.
Cardiprin: "Cardiprin 100 is a special formulation containing 100mg aspirin which reduces the aggregation of platelets in the blood and helps to unblock blood vessels. It does this by selectively inhibiting platelet cyclooxygenase, decreasing thromboxane production and inhibiting platelet aggregation."

Maybe it would work, but I am yet to run this idea past the docs.
It is good news that you report relief from one of the cheaper, safer and easier to get drugs - like Soluble Aspirin! Sure beats the routine I have to go through to stock my shelves with my drug arsenal!

Good luck with it all.
Cheers, Ben.

Posted in The latest for me... on 31 Aug, 2011 - 8:16 pm

I think most experienced CHers will agree that a trip to A&E with a cluster headache is for the most part - a wasted one. (Once CH has been properly isolated, diagnosed and confirmed).
Most cluster headaches come on so fast there is little or no point in driving to hospital, waiting, educating the staff, getting onto the O2 supply and attempting to abort an attack. Even with an O2 cylinder waiting for me at hospital with the staff CH aware, with advance warning of my arrival, it is still not enough for O2 to be effective in A&E, the attack is just too far progressed to treat. This is no joke - I have been dropped by a CH in 15 seconds. "I think I might be getting a..." BANG....CH attack! In my experience, this whole A&E visiting process can take at least 30-180 minutes or more to achieve - exactly the lifespan of a textbook CH attack. Most of my A&E excursions have taken 8-12 hours or more so there is little point trying to get hold of O2 for me. I have waited for so long in A&E that I have had 3 or 4 attacks come and go before I have left in disgust and gone home to bed.

I am no O2 expert, but any abortive needs to be administered at the onset of attack. Most O2 users say they must get onto it immediately if not sooner if O2 is to work. I am A&E aware when it comes to CH. I don't bother anymore, A&E staff are not trained to deal with CH, it is not life threatening and will prioritsed accordingly. Going home from A&E after an attack has passed unmedicated (including O2) seems to be the most common scenario. Do this a few dozen times and the stress of repeated A&E failures can get the better of anyone. Very counterproductive, especially if you have a Husband to convince and children in tow. I am alone and single and it is logistically impossible for me without assistance. (Try driving into oncoming headlights at night with a force 10 CH - safely. It can't be done!)

I would recommend getting a note/prescription from a Doctor for an O2 cylinder for home use, or as my specialist suggested, try O2 in hospital as an admitted inpatient. I have done this. I sat in a ward for 2 days (just during business hours) and waited for an attack. When it came we trialled O2, in my case it did not work, but a lot of people report instant relief from this relatively safe drug (In comparison to the arsenal of pills I have to take...)

Nice to see SOLUBLE ASPIRIN making an appearance again.
I sing the praises of the drug regularly, some people report great success, as do I.

The dosage is completely correct for CH - 900mg at onset of attack.
Aspro Clear make an "Extra Strength" Soluble aspirin at 500mg per tablet. The label lists dosage at 2 X tablets for an adult, thats 1000mg, straight off the supermarket shelf. This is a safe drug when used correctly.

Normally advice is that if you don't take it in the first 5 minutes, it will not work. I have been using it since 1979 for CH and if it is going to work at all, it seems to make no difference when I take it. As a general rule, the earlier one can take it the more effective it will be, but I can take it 1 hour into a force 10 CH and I will be guaranteed at least a reduction in pain to a 6-7. I often wash down my Imigran FDT with 900mg Aspirin, the Aspirin seems to prevent rebound attacks from imigran, as Aspirin can stay in your system and still thin the blood for up to a week I believe.

My CH specialist recommends Soluble Aspirin 900mg at onset of attack. The most effective and least damaging OTC analgesic other than this is plain old Paracetamol. (Forget Ibuprofen, Voltaren etc (Diclofenac in all its forms). They are gut burners, trust me on that, I a currently suffering the resulting stomach ulcer from cumulative use of such drugs amongst others.

I can't see "Aspalgin" itself doing much good. At 8mg a piece, the Codeine contained in Aspalgin tablets absolutely will not touch CH whatsoever and in my opinion is unneccesary. 90mg+ of Codeinie does nothing for most people with CH, I doubt a measley 24mg (less then 1 Panadeine forte) will do anything other than cause some minor side-effects and possible opiate dependence issues in the longer term. When opiates are finally used in CH as a last resort, they are usually schedule 8 drugs like Morphine injected by a nurse or doctor in the correct clinical setting. I have never been given an opiate stronger than Panadeine forte in my lifetime of CH. Imigran injection is far less problematic to obtain, use and is totally effective. In my case, Morphine, Pethedine or even oxycontin have not been used and I think would be unneccesary for me. I strongly recommend seeking advice from a GP or specialist on obtaining some Imigran tablets. They may take 15-40 minutes to work, but this has got to be quicker and more convenient than a trip to A&E in the middle of the night.

Good luck, I hope Imigran provides some relief.

Cheers, Ben.

Posted in Thank you. on 31 Aug, 2011 - 1:07 pm

Whew! Close call. Good to hear there was not a double up.
I have had suspected "Serotonin syndrome" from such a double up with another anti-depressant plus Imigran, not fun indeed...
The manufacturer of Imigran tablets specifies a 300mg per 24 hrs upper dose limit.
The literature says you can have an INJECTION of Imigran as soon as 1 hour after the last one. Plasma clearance is so fast with Imigran it can be used relatively soon after a previous dose. Imigran is excreted very quickly which I feel personally adds to the possible eventuality of rebound attacks as Imigran wears off quickly and blood vessels dilate once again.

Beware the Sumatriptan rebound cycle! (2 years of my life I won't get back...)

One PDF I cannot locate online anywhere is the leaflet contained in the Imigran injector refill packs. This has the clinical trial data for all forms of Imigran, dosages amounts and intervals for every mode of delivery (Nasal Spray, Tablets, FDT tablets and Injections).
This leaflet is the comprehensive story on Imigran direct from the manufacturer.
It folds out to the size of the London Times and has so much data on it. I wish I could get it up here for site users. Even if I scan it, I don't know where to upload it so that users can read it. In all the forms of Imigran I have taken, this is the most informative and comprehensive Datasheet I have seen on Imigran anywhere. I will try to find a way to upload it as an image somewhere else, then provide a link if possible.

In the meantime, I can have a go at cobbling together the available info on Imigran dosages and intervals, here goes:

Or go to Glaxo-Smith-Kline direct for a list of downloadable PDFs on Sumatriptan:

I had a few issues getting access to these PDFs, but I think it was software related at my end. Let me know if they work for you?

Hope that clears things up a bit.
Thanks to all for the messages of support about my Mum.
She is getting better now after her own drug contraindication...
Much appreciated everyone, thanks.

Cheers, Ben.

Posted in Thank you. on 29 Aug, 2011 - 3:44 pm

Watch out for doubling up on triptans.
No triptans are to be used as preventive medications for CH, they are abortives only.
Maxalt is Rizatriptan.
Imigran is Sumatriptan.
Taking both of these at the same time will cause serious side-effects.
Doubling up on triptans can cause severely elevated blood pressure and serotonin syndrome amongst others, not pretty...
They are more or less there to achieve the same thing - vasoconstriction.

Sumatriptan also comes in 50mg tablets (Imigran FDT), I have had success with 50mg.
If 50mg is sufficient to abort an attack (this is a strong drug) 100mg is definitely overkill and may even increase the chances of beginning a rebound attack cycle when the drug wears off. Using the minimal effective dose to abort CH is the go. No need to use a sledgehammer to crack a walnut. No, I don't think you are expecting too much, the triptans are one of, if not the most successful, effective, safe and widely used drugs used to abort CH.

Sumatriptan (Imigran FDT data sheet):
Check this out for contraindications:

Watch out for MOAI based antidepressants if you are using triptans, they are also contraindicated.

Looks like another classic case of doctors not communicating and the patient ends up with 2 lots of the same drug group. This is called a contraindication.
A drug contraindication put my Mother in critical care unit yesterday - it is touch and go right now, it can happen to anyone.

Cheers, Ben.

Posted in Chronic Pain as a recognised condition on 27 Aug, 2011 - 3:10 pm

Thanks Matt,
I am an implant newbie, yet to be installed.
Some clarification about lead placement was really useful, I get it now.
I wish I could come up with something more inspiring than another "hang in there" for you, but I am at a loss for words (at last...)

Keep well Matt.

Cheers, Ben.

Posted in Untitled on 27 Aug, 2011 - 3:03 pm

Excellent idea, wish I had thought of it!icon

Cheers, Ben.

Posted in It begins.... on 26 Aug, 2011 - 10:16 pm

Just a short note here. I thought Celebrex got pulled from the marketplace along with vioxx about 10 years ago? I could be wrong. From memory I think it was causing an alarming number of strokes and heart attacks. I tried them both - no joy there.
I thought Celebrex and Vioxx were a joke for CH in my case.

3 Panadeine forte equals 1500mg of paracetamol.
Whilst I am sure you can handle 90mg of Codeine, this is a paracetamol overdose, I used to do the same thing until my liver count escalated beyond the point of an alcoholic and I don't drink. It was off the chart.
Together with Ibuprofen I would say you might be heading for a hole burnt in your gut, just like me! However, this did take 20 years of serious Pharmaceutical use/overuse before it hit me.

A good CH specialist will not even bother with Panadeine forte for CH.
I still have it prescribed in lots of 120 tablets, mainly for back pain, but it does take the edge off the residual head pain between attacks a bit.
Codeine is a trojan horse delivery system to the body for Morphine.
The body does not get relief directly from Codeine the opiate itself, the body has to convert Codeine into Morphine before it will become available to your body. This is Morphine and it can lead to long term dependence and addiction issues as I am sure most people are aware.

For pain relief maybe Tramadol or Capadex would be better, but they have their problems too. I rotate them as they become less effective.

I and a few others have had luck with Aspirin ("Aspro clear" Soluble 900mg at onset of attack). I have been using Aspirin since 1979 for CH. Despite having completed around 60 odd drug trials, I still find Aspirin to be a frontline CH treatment - recommended by my specialist too.

Failing that, I hit my CH with Imigran MK2 injections.
6mg subcutaneous. Works every time.
That sits me on my arse! Not that the CH attack had not already done this...

Please don't take this as a correction or anything, I just don't want to see another CHer end up where I am!
Be careful mate!

I am not a Doctor, if anyone is thinking of trying these ideas please seek medical advice.

Cheers, Ben.

Posted in Thank you. on 26 Aug, 2011 - 9:50 pm

Hi to all,
I have passed on details of my CH specialist here in Adelaide to Rick.
Hopefully there is some help there. Stretch will back me on that one.
Stretch took my advice and presented in front of the only recognised CH specialist in the country and now has a treatment plan, the support and medical supervision of Pain Management Unit at the Royal Adelaide.

Rick, I sincerely hope that you do make it to see my specialist.
Getting in front of the right person for the job can be a challenge.
I bet you didn't realise that while you were in Neurology clinic (if at RAH) that one of the world's leading specialists was literally sitting 1 floor above you, mere metres away.
So close... Just gotta get the right paperwork to see him, that's all.

I agree with Peter, gotta get off the Pred. We are both experienced Pred users (or ex-pred users...)
I have been a vocal defender of Prednisolone for use in CH before on here before.
It has its place, but the long term side-effects are terrifying.
I just recovered from my second bout of adult chikenpox induced by Prednisolone and that is a relatively minor incident. Pred has now given me a suspected stomach ulcer to top it off. Now I throw up my medications (Imigran etc) thanks to the gut problem - courtesy Pred. Not to mention th 30 odd KG I have put on in the last 4-5 years after so much Pred... So after Pred has finished with me I am overweight, very nauseus and ill and if a major CH bout starts again I am screwed. I can't keep my medications down now - thanks Prednisolone!

Heather, next time your CH starts up, ( hopefully never...) please, please consider my specialist in Adelaide. Surely has to be better than a trip to Melbourne to confirm what you already know. It does frustrate me Heather to know what this incredible professor is capable of achieving with his CH patients just down the road, yet you are forced to seek advice over the border!!!! This is a worry and shows how far people are prepared to go for answers. Welcome back from the holidays!

I must stress here that "my advice" here is not medical.
It is mainly focussed on using my experiences to connect untreated and very stressed CH patients with medical services that may be appropriate for them, then I get right out of the way and let the specialists do their job.

There are answers here Rick. We can't solve CH on this site alone, but I am going to give it a bloody good try! I have no other choice...
There are so many treatments in the pipeline, we are so close to getting a handle on CH for good. I hope I live to see that day.
In the meantime, we are here to help anytime you need it.

Cheers, Ben.

Posted in Chronic Pain as a recognised condition on 25 Aug, 2011 - 11:12 pm

Didn't you have yours done by a Neurosurgeon?
That was a given I thought. Surgery involving the nervous system is complicated stuff and this particular op is VERY experimental, at best.
I would hate to hear that you were supplied with anyone who lacked the qualification, skill and experience to carry out such work. Whilst I doubt this has happened. "This time we will be bringing in a Neurosurgeon". That concerns me. What kind of Doc worked on you Matt?

Good to see that they have a proper team for next time.
Real important for everyone with CH - get a good team behind you.
Support from multiple disciplines of medicine is needed, my PMU has every type of medical practitioner available. With backups like Dermatology and infectious disease experts I would expect the outcomes would be a lot better next time.

The Neurosurgeon I spoke with showed me a little powerpoint presentation explaining what he would do to put the implant in. He showed me some pictures of a guy under general anaesthetic who was about to have the procedure done. This patient I presume had scans to show where his occipital and trigeminal nerves were. The locations of nerves were then overlayed or traced - drawn on his bald head in texta. When the elctrode is placed under the skin they use live X-ray to make sure the wire is located in the right place.

With regard to number of wires; it is my understanding that there are many available stimulator implants. I watched the DVDs and read the info you got to me on your unit, it looks like I am receiving a different unit than the one you had done.
Maybe I will get one like this one instead:;12;621-628.pdf

(Sorry if this links to a dead page, I tried it, I can't get the last few characters in the link to this PDF to turn blue.You may have to cut and paste this address into your web browser's navigation toolbar, worth checking out.)

The Neurosurgeon I saw explained that the nerves we want to stimulate run all the way down through the base of the skull and even connect as far as C1 and C2 in the neck.
(Here goes all the neck related headache discussion again...)

This is what he was talking about.
Check this out, especially the parts about the trigeminal nerve and C1-C2: (Heather, check this out too, there is finally some stuff on IV Lidocaine in this literature!)

Now, the wait for elective surgery in a public hospital may take 3 months or more.
Then I will have to attend pre-surgical assessments and other hoops to jump through.
Then I think the wait for the funding will start.
Then the wait for the availability of an implant.
The word is - there are only 3 units per year available at the RAH across ALL patients and ALL medical conditions. I could be wrong, just a rumour...
This means that if someone more ill than me needs it, they get first option. I sure won't take one away from someone younger and suffering more than I.
But on the other hand I am a much more likely recipient than say a 70+ year old CH patient with multiple health issues and less quality of life gains to be achieved in the long term.
It could be 48 hours from now - it could be 2 years. I don't know.
Good thing I am well rehearsed in waiting!
35 years of it so far mate! Whats another 6 months in the big scheme of things?

Sorry to hear it didn't work out Matt.
I hope it goes better next time, but more importantly that you are still here to have a next time. I hope the TENS machine works, I am off to find out where I get mine!

Cheers, Ben.

Posted in Energy Drinks Oxygen & others on 24 Aug, 2011 - 6:50 pm

Hi to all,
I have just been scoping out re-breather masks in preparation for oxygen treatment.
My Doctors don't know it yet, but this is what I want to do next. I definitively want to rule it in or out as an effective treatment option for me once and for all before they start getting the scalpels out...

I know the rebreather and the breathing techniques are the tried and proven ones for CH, I am not setting out to reinvent the wheel here either. But my searches kept showing up SCUBA equipment. I know nothing about diving or firefighting, but I figure a diver needs to have access to his clean gas supply without inhaling air already breathed.
I quickly found out it is a complicated area with many applications for masks and gases for everything imaginable... I am going to stick with the tried and proven methods.

But I did find this, it looked hilarious but possibly functional, bloody expensive!

Enter the Rolls Royce of CH O2 delivery systems, fully customisable into a suitable configuration for ch: smile

What do you reckon Barry?
If O2 works - suit me up with one of these suckers and I will be ready to take on the world whilst looking somewhat ridiculous...

Cheers, Ben.

Posted in Chronic Pain as a recognised condition on 22 Aug, 2011 - 6:41 pm

Hi to all,
Went into Neurosurgery today to discuss a nerve stimulator impant.
I was offered a shot at a trial implant for CH. One electrode will be placed horizontally across the back of my head at the base of my skull. This electrode will adequately cover the trigeminal and occipital nerves. I am unsure, but I think a third nerve pathway was included to be blocked. Multiple wires are not necessary. The electrode (from my understanding) appears to have 3 or 4 points where metal contacts tissue. There will be only 1 cable. I am unsure whether this "cable" contains multiplle conductors, (thus giving the user control over which areas to stimulate) or whether it is a single conductor.
From what I can work out, the only adjustment a user can make is to attenuate the "amplitude" of the device.

For the tech heads: This means that voltages and pulse rates are preset, the only patient variable quantity is the adjustment of applied current as measured in milliamps, or "Amplitude". Basically turning up the electrical gain (output) or "volume" as you would to make your Ipod sound louder.

The trial implant cable stays in for 1 week, battery/control unit taped onto my chest. I have to hope that my CH bout lines up with that particular week, or we will have trouble establishing efficacy in CH with this device. There are hoops to jump through and time to wait before anything happens on the implant front for me. Chances are, the peak of my CH bout will line up with a 6 month wait just nicely and I will get a proper shot at this. Fingers crossed.

Until then I am in the luxurious position of having experienced only 3 or 4 relatively minor attacks per week. About as good as it gets for me!
Can't hold that against me, I had been in a bout since Feb and this is a short one...
Everyone needs a break sometimes...

Matt, I am sorry about the timing of this. To hear of others hopes or successes with implants must be real rough today of all days. I would find the irony unbearable, but I am trying to show that where one treatment fails for one person, it may work in another. Thats what we are all in this for, so I will share my own experiences on the implant.
If you hadn't done this yourself Matt, I would not have made it there today.
Thanks for inspiring the confidence in me to face what was a scary day.

Thinking of you tomorrow.
I hope all goes well for you and family considering the circumstances.

Apologies everyone, this was supposed to be over in the "Lyrica" thread where Matt posts on implants, sorry - been a long day...

Cheers, Ben.

Posted in Chronic Pain as a recognised condition on 21 Aug, 2011 - 8:33 am

Hi to all,
Matt, you are in my thoughts, very emotional story for me. You struck a chord here, I have had to put my hand out in the past too, courtesy CH. It can be a humbling and demoralising experience for anyone, especially the first time you have to do it, all over "headaches". That is the hardest thing to take. It does let you know you are alive in a strange paradoxical sort of way...people can be so nice sometimes it makes me want to cry.
I hope you made it to that soccer game despite all you are going through. Look after yourself Matt. I am going in for my talk with Neurosurgery about an implant on Monday. Your words of encouragement are the only thing that will get me in the door at this point - I am scared. I will keep an open mind and see what they say...

Ch stopping work...
Having CH since birth has stopped me from successfully holding down any job for longer than 18 months ever and that 1 job nearly killed me (Took way too much Deseril/Capadex/Tramadol to get through work). CH may be difficult for employers/clients to understand at the best of times, but the complications from CH treatments can be a disability in their own right and can be even more difficult to explain to people. Just tolerating Topamax's side-effect burden can be a disability in its own right for some people like me.
I have been out of work due to CH since 2004. Hard to take, but I have found other directions and scraped out a life for myself. Work isn't the be all and end all, but it doesn't make my life any easier being "Disabled" either...

Explaining CH and its complications to people around me...
It is difficult for me to try to explain to my TAFE lecturer that I didn't have a CH attack, but was unable to attend my once-a-week, 3 hour course due to Prednisolone overuse, subsequent chickenpox and now the beginnings of what looks like a stomach ulcer from too much pred - people like my lecturer may be great people, but they never seem to get sick and don't have the time or room to develop a working understanding of CH. They are left scratching their heads in confusion at what they hear from me. Who can blame them really when most people have 1 or 2 normal headaches per year and get away with 2 panadol?

CH as a recognised Chronic Pain condition...
I think CH is a primary chronic pain condition in its own right, that much is obvious and has been acknowledged by the medical profession for a long time now. Chronic pain is recognised as a disease/illness/disability in its own right too. The medical profession has suspected this for decades and in the last decade has widely acknowledged this.

CH and Centrelink...
The crux of it with Centrelink lies between the terms "Chronic" and "Episodic".
Centrelink and the International Headache Society have discrepancies between their recognised medical definitions of the terms "Chronic" and "Episodic" in relation to all medical conditions. Whilst you may more than satisfactorily meet the I.H.S. criteria for chronic CH, Centrelink may take a different view.. Whilst here (on the site) we all know the nature of CH, it can be very difficult to convince the welfare system that this condition does indeed have such a dramatic and incapacitating effect on the lives of those who experience it.

However,achieving disability status for CH can be done, I am living proof.
You need to be diagnosed, confirmed, chronic and be out of treatment options.
The condition must also be "CHRONIC" and likely to continue for a period of 24 months or more. An "Episodic" (medical term) CH in the true sense for CH sufferers is probably not a condition that one would seek Disability Pension for.
You need to be the worst of the worst before they will consider it.
(I think both Matt and I fall into this category...intractable..)

Centrelink have their own definitions and like to play word games with the term "Episodic". This term is at the heart of any Disability Pension application and is the difference between receiving vital financial assistance or being left out in the cold. Whilst I am sure Centrelink's contracted medical staff fully understand the basic medical term "Episodic", it is not immediately clear to them how this applies to CH. They would like to have ruled that my CH condition consisted of 6 or 7 "Episodes" per 24 hours for 9-10 months of the year and would have had me work "In between attacks" (Totally impractical and impossible to achieve!). They know nothing about 'going into a bout of CH'... We all know this is classic textbook "Chronic" CH. There is nothing "Episodic" about having to recover from 6 attacks a day I think you will agree.

Advocacy and help from counsellors for people with CH...
I spent years attempting to prove that "No, I am not good for a few hours part-time work between attacks, these attacks are totally unpredictable!" before my lack of attendance and unreliability became a recognised issue. When I was eventually able to establish (with the help of my specialist) that I had a diagnosed, confirmed, intractable and CHRONIC pain condition that was likely to preclude me from employment for 24 months or more - finally I met the Centrelink criteria for Disability Pension.

Getting my CH recognised by Centrelink was a 5 year battle. From employment to sickness benefits, to the dole, back to sickness benefits and finally onto the pension.
The paperwork that finally got me there is about 5 inches thick.
This is the kind of protracted battle that no CH patient should have to fight alone as I did.
I would take Matt's advice and ask for some help, no matter how CH is negatively affecting quality of life, there is usually someone who can help. It took advocacy from Centrlink's social workers, CRS social workers, my GP, my specialist, RAH nursing staff and all the folks in PMU to have my condition recognised as a disability in its own right.
Things have improved a lot since my battle years ago. I have helped a few people recently achieve Disability status in just a few short weeks since the Government streamlined the process and stopped making it so difficult for legitimately ill people to be recognised as disabled. Don't get me wrong, these are very ill people...

CH and financial hardship...
This leads me to the unenviable task of being forced to seek charity. Many times I have lost relationships, jobs and accomodation to CH. In 2004/05 untreated/unmedicated CH had me living in a tent not knowing where my next meal was coming from, while I lived on my Mum's lawn and helped her to beat breast Cancer. (Even CH has to take a back seat to helping family with potentially terminal illnesses). I have sought charity from these same groups before, a humbling experience indeed.

This is why I write all this stuff! I want CH recognised outside of specialist care, outside of Pain units and into the public domain. I had to trailblaze through Centrelink's gruelling process to have CH recognised as a disability. We achieved this after that long battle, so it can be done!

Anyone out there who is between a rock and a hard place from CH and its treatments should know that with the right support from charities, medical officers, social workers and doctors - you can land in the safety net that is Disability Pension. That is what it is there for. I am not encouraging everyone to rush out and seek welfare for CH. Every case is assessed by Centrelink on its own merits. In my particular case, a lifetime of chronic CH went a long way toward getting me some financial assistance and respite from the transient, semi-homeless lifestyle I had thanks to CH.

Don't be afraid to reach out and ask for help people!
Matt, you are a stronger man than I. It seems you have achieved so much despite a lifetime of CH. For me it was a case of "When you got nothin' - you got nothin' to lose".
So I sought help before I reached the point of ending it all. Glad I did.
I am still alive to receive an implant and the hope of relief.

Without all these people to help - and this site - I could be a lot worse off.

Good luck with it Matt.
Cheers, Ben.

Posted in CH gets a mention in mainstream media at last! on 18 Aug, 2011 - 5:42 pm

Hi to all,
I have heard reports that some of the telephone numbers given during the JJJ interviews were either temporary ones or some technical fault had occurred.
There are many reasons why the phones could have been dead on the night of the radio show.
I have not tried any of the SMS services or any of the hotlines, but by all accounts they do not appear to be operational at the moment either.

DEV1980, sorry if I jinxed you mate. I know I can't have caused CH outright, but it does not stop one from becoming superstitious about the things...

Any chance of a link to the JJJ hack/facebook page for the readers?
I am not part of facebook, so I cannot link it in here.

Cheers, Ben.

Posted in Untitled on 18 Aug, 2011 - 5:32 pm

Thanks Matt,
Very anxious wait for me until then. I am a nervous person these days, so I will be doing my best to quell any anxiety until then. Thanks for your words of encouragement, much appreciated under the circumstances Matt.

Cheers, Ben.

Posted in Untitled on 17 Aug, 2011 - 10:18 am


Vent away, my thoughts are with you Matt.
I am going in on Monday to begin discussions with Neurosurgery on my implant.
I will certainly be looking very hard at it under the microscope before I commit to anything, especially in light of your experiences.
I am physically out of tolerance for any more medical mishaps after 3 or 4 near death experiences in as many years. I know I could not go through what you have, despite having bouts similar to yours. I may not be able to face this op.
There will be much debate on Monday. Thanks to your accounts here Matt, I am going into this with my eyes partly opened anyway...
I will try to be objective about it, I know there are successful implants out there.

I am so disappointed that it did not stick for you Matt.
I wouldn't know where to go from here, I am in the same boat.
Selfishly, I am also disappointed for my own situation, your story does not fill me with hope and confidence for the same op in Adelaide...
So what else can I say? Other than, enjoy that soccer game mate.

Cheers, Ben.

Posted in CH gets a mention in mainstream media at last! on 15 Aug, 2011 - 12:56 pm

Hi to all,
Make sure you have some sound on your computer and a few minutes to listen to this story, it includes one person's account of CH - from ABC's TripleJ if you are interested:

Thanks to the person who provided me with the link!

Cheers, Ben.

Posted in Energy Drinks Oxygen & others on 14 Aug, 2011 - 7:56 pm

Thanks for taking the time for such a comprehensive reply Barry, much appreciated.
I will check it out far more thoroughly than the Docs and I did last time, if it works, it may just save me from an experience like Matt is going through with the implant surgery.
I want to completely rule out any other options before undergoing any Neurosurgical procedures.

I will ask about the red bull, but I suspect I may have to steer clear of it for other reasons.
Hyperventilation, in the true sense of the medical term - is something I would really rather avoid. I have done it twice before, a highly undesirable experience. From what I was taught of operating an oxygen mask there was no hyperventilation involved, just a breathing/inhaling-exhaling technique focussing on receiving the highest, purest concentration of O2 without receiving any exhaled/exhaust air.
A bit difficult to do with a standard mask I think, I would like to try the re-breather, I know they are around on Ebay and other sites.

Thanks again Barry, I will check it out.
It would be nice to see the back of the pharmaceuticals, I think my liver and kidneys would agree...

Cheers, Ben.

Posted in Untitled on 13 Aug, 2011 - 5:34 pm

Jees Matt,
Sorry to hear that it is not going well. I hope the Docs look after you whether the implant takes or not. It must be real rough. Get well soon.
I thank you for posting your experiences, it helps a lot.
My best to you and family.

Cheers, Ben.

Posted in Pituitary gland question... on 13 Aug, 2011 - 5:22 pm

With your diagnosis/condition, personal experience and the contacts you have on here, I reckon coming back to Australia would still be manageable for your CH. It would still be a shock to the system I am sure, going from OTC drugs to some of the hoops we have to jump through, but it can be done. I wouldn't let it put you off being here if thats where you need to be!
I was speaking to someone a few months back (A CHer) in NZ or the UK who had plans to move here to Adelaide and very smartly had already made inroads into Medicare and waiting lists ahead of time, whilst still OS. So they could effectively walk straight into some CH treatment in OZ, a really good idea on their part. I put them onto my specialist too. I believe they will have access to his services soon after arriving to live in South Australia.

Wow, same-day MRI - even with unconfirmed CH years ago (possibilty of aneurism, Brain tumour etc. not yet ruled out) I did not get near an MRI until after I had done a lap around the whole GP - X-rays - GP - CT scan - GP&specialists - MRI - Specialist roundabout. This all took about 2 years. 9 month wait on the MRI alone after specialist referral. We only have 1 MRI machine in the RAH and it runs 24/7, I had one MRI at 2 or 3 in the morning. I think the scheduled Medicare cost of 1 MRI scan is about $2500. Public patients do not have to pay anything, just wait. To get in quicker you need to be a private patient in a private hospital.

Some private patients with employment are expected to front this huge amount of cash and then claim it back later from their health insurance companies, a silly process that leaves people in pain when the don't need to be. It is just unaffordable for a low or even medium wage earner, so they have to wait too with the rest of us. Dental is the same, 1 year plus to get anything done, it is easier to pay.

If I believed the media here, Russia doesn't even have hospitals or any systems at all. We don't hear much about Russia at all, it is off the radar until there is conflict. All the media reports is a state of disarray, but you seem to be able to hold down employment and manage CH better than I can here?
Things must be more stable there than we are told.
Strange how things work for CH in different places.

Hey, how do I make this "suffering" status go Green? - if I try that the headaches may stop completely!

Posted in Pituitary gland question... on 12 Aug, 2011 - 2:52 pm


3 months is a short wait here now mate!
IF you can get in to see a GP in under a week you are doing well here.
Some will do "same day" service, but these are mostly multiple Doctor practices full of quacks that know Zip about CH. Useless...
Some are not even taking new patients, some are just jacking up their gap fees. Then you need to find a CH aware GP (we all know how hard that is...) to write a referral to a major public teaching hospital. In my case - the Royal Adelaide. In the first instance most GPs will refer CHers to Neurology depts. Outcomes for CH patients in a Neuro clinic varies widely from patient to patient as we all know from the experiences on this site. (Another story...)

I went through the RAH Neurology dept twice - to no avail. I also went through a suburban hospital's Neuro clinic - this was a further step backward. When you have finished with Neuro and ruled out any other treatment options, you go back to the GP and seek referral to a Pain Management Unit - the last resort. A standard referral to PMU in the RAH takes at least 15-18 months before you can even begin to start exploring options for CH treatment. I know 2 people on that waiting list now entering their 2nd year. So I know South Australians without private health insurance face a long wait.

I had my first GP referral to Neuro dept in 2004, it has taken the subsequent 7 years to get where I am now - all drugs tried and ruled out as ineffective - "intractable" as they say. Some would see this as a "broken Health System" again. The wait times are long and the GPs can be difficult to educate on CH, but we still have access to world class health care. No complaints from me about the medical care I have received since attending PMU, they are excellent at what they do! Worth the wait.

(I think things here have actually improved since 2007 when the change of Government and health minister officially gave us PBS access to new medications like Topamax in 2008. Some CH patients would be stuffed with out these changes to the PBS system - I for one.)

I see many walk-outs and frustrated "How long is this going to take?" responses from PMU patients in hospital. I have a quiet laugh, take that question as rhetorical ("How long is this going to take to cure?" is what they are really asking) as if chronic pain is a temporary inconvenience that will soon be miraculously "fixed" by someone...
I just take something to read and focus on the art of patience.
Sometimes I think the medical term "Patient" is more of an instruction than a label.

I used to be horrified, but now I just sit and outlast all other patients' patience - if you get what I mean. Then I get access to the A1 health care they were too impatient to see. I got so good at waiting, I was still waiting one day when they forgot my appt. time and were locking up and turning off the lights for the day! A nurse comes over to me and asks what I am still doing here at 5pm, I say "waiting". And this doesn't include the 20+ years previous where I waited to hear the word "Cluster" uttered by a specialist for the first time in reference to my life long Headache condition. There is a lot of waiting indeed.

Peter, you would know all about this - when I used to live in W.A. it stood for "Wait Awhile"!!!!

That's the story on waiting in SA anyway...


Posted in From Circadian Rhythm to the Hypothalamus on 11 Aug, 2011 - 9:25 pm

Some more not so light reading on Hypothalamus-pituitary gland-adrenal function. Of particular note is the section on "function", which explains how hormone levels rise and lower at specific times of day, strangely it seems to me that these times of day are consistent with some patient's CH.

Here is some interesting stuff on how the Docs go about testing some of these functions. I am looking for a diagnostic test for Hypothalamus function. Has anyone ever had a "test" of their Hypothalamus function?
Is there such a test?

Cheers, Ben.

Posted in Fantastic website for a CH newbie! on 11 Aug, 2011 - 10:09 am

Thanks Peter, nice to bounce it off someone, I think another O2 trial is in order.
I would like to hear what Barry has to say on this, he seems to have extensive experience with all things O2. I must PM him when I get the time.

I will check out Taurine, I have not researched it yet at all.
Honestly, I didn't even google "red bull", I am getting slack with my research, there is just so much to sift through...

Cheers, Ben.

Posted in From Circadian Rhythm to the Hypothalamus on 10 Aug, 2011 - 10:13 pm

Hi to all,
I am beginning to agree with Barry's theory that CH is a side-effect or symptom of a knackered Hypothalamus. (Or words to that affect. Sorry Barry, not a direct quote I know...)
The Circadian Solstice thread seems to be running it's own course collecting CHers valuable experiences with their sleep patterns in relation to CH. Some of the patient accounts on that thread have lead me to research other areas possibly linked to various parts of the brain and what they are doing during CH. Like I said on the Circadian thread - we are not going to crack the mystery of CH right here, but we can throw ideas around.

Some further digging around is in order. Researching brain anatomy and function is difficult for anyone at the best of times, especially if you are not someone who is a trained medical specialist. It is a complex and confusing area. Any CH specialist will tell you it is not well understood and not yet an exact science. I think science and CH patients will benefit from this growing body of experiences if we keep talking about CH.

This stuff is not light reading, but may be of interest to those who are following ideas around the Hypothalamus on the site.

There is some interesting and possibly relevant stuff in here on the Pituitary Gland:

There is an interesting article on Homeostasis too. This one is particularly interesting when it comes to blood vessel functions, vasodilation and vasoconstriction:

Any more thoughts anyone?

Cheers, Ben.

Posted in I am not sure, could someone give me their opionon on 10 Aug, 2011 - 9:52 pm

Hi ShivBot,
Welcome to the site, my condolences on the headaches.
Check out the International Headache Society's Web-based application.
You can search the diagnostic criteria for the type of headache that best resembles the symptoms you report. Good luck with it!

Cheers, Ben.

Posted in Fantastic website for a CH newbie! on 10 Aug, 2011 - 12:20 pm

Hi Kazza and Barry,

Decrease with age? Oh Barry how I sincerely wish that were true for me. I have had CH since birth and just when I think its backing off a bit it always finds new and creative ways to get worse every year. I too have been told that CH can diminish or go into spontaneous remission and I do live in hope of this. But after 35 years of it, the only thing diminishing here is the hope itself that they will ever stop!

What is it with Red Bull? It is everywhere in CH literature.
I am scared to chug a few of these because I don't know what is in them and high-dose caffeine sometimes causes tachycardia in me, also worried about interactions with other heart meds.

Can anyone explain what the working theory is behind chugging a few of these Red Bulls at CH onset? Vasodilation from caffeine perhaps, what is the mechanics of it Barry?

After 60 odd unsuccessful drug trials I would like to ditch the drugs too.
Hmmm, No medications, Red Bull, Oxygen, Ice packs - you may be onto something here. The idea of going back to the bad old days of no meds - no relief is really scary, did that for the better part of 2 decades and don't want to go back, but the meds are really taking their toll now, I may have a stomach ulcer or burned a hole in my gut from meds. so I may have no choice.

I would like to try this approach I think.
Also Barry, my O2 trial was conducted straight off the hospital wall outlet O2 supply, through a normal oxygen mask with the holes taped up. It was somewhat hastily cobbled together with the resources at hand. I learnt the correct breathing techniques at the time. We ran 15L/min at as close to 99% pure as the hospital plumbed O2 system would allow. We did not use a cylinder or a rebreather mask. We only did this once. I think this is where we may have failed to effectively detect efficacy (or inefficacy) of O2 in my CH.
I am facing an implant operation that I would honestly rather avoid.
Do you think I should ask my specialist or GP for an O2 cylinder to try at home with the right mask before we go ahead with implanting anything?

Of course I am not asking for outright medical advice Barry and I know you are very careful about this, I would just appreciate your thoughts on the merits of my O2 trial, seeing as you are an experienced O2 user! I reckon we got it all wrong and I need another go!

Cheers, Ben.

Posted in Untitled on 10 Aug, 2011 - 12:31 am

Excellent news! Hang in there Matt, lets hope those antibiotics are strong ones.

Cheers, Ben.

Posted in Circadian Solstice??? on 08 Aug, 2011 - 11:07 pm

Hi to all,

Interesting stuff indeed Sara. It led me off on another research tangent.
I have looked at some light therapies, alarm clocks with lights and even been looking for stuff on Ebay so I can build myself a simulated sunrise/sunset cycle device.
This principle works well everywhere else in nature, I don't see why not for me.
That link is an excellent resource and jumping off point for anyone interested in Circadian Rhythm and finding ways to manipulate theirs.

This may seem outlandish, but I am/was a production satellite electronics tech so I can pretty much build whatever I can think of. All I need to do is find one of these alarm clocks with sunrise/sunset timers and plug a very bright light into it (simply speaking, there's a lot more to it in technical terms) so that I get hit with 10,000 lumens in the morning at the same (and hopefully right) time of day, then go to bed with the light on and have it fade out at the same time every night.
The trick is going to be working out which hours to set the timers for, working out if I need to have a lengthening or shortening day or some set of cycles to use for CH.
Then there's working out if any of this has any merit at all...
I may be clutching at straws here...

It's relatively cheap and worth a shot, if I have any success I will let people know.
I will probably have to start making the things or post build plans if they work!
Gotta be worth a try when I am facing surgery I don't want.
Cheers, Ben.

Posted in Wikipedia?? on 07 Aug, 2011 - 8:47 pm

Hi Kazza2,
Just a couple of links that look at securing you a prescription supply of Melatonin. The homeopathic or internet suppliers' (non-prescription) varieties vary greatly from batch strength to brand and thus efficacy. They have basically been discredited by the Pharmaceutical industry on this basis. Whilst some may work for you now, there are inconsistencies, the next batch may not, the next batch may make the problem worse or create other unforseen problems. It is not a recognised or approved "food product" let alone a medical one in this country or many others, so nobody can say for sure what is in it or in what strength. I know I would not take unknown or potentially fake drugs from online, it could be talcum powder for all I know - I have tried enough supposedly safe and approved drugs that nearly killed me! Sounds a bit like possible drug roulette to me.

The research as I understand it, says that a Melatonin product not approved for medical use in Australia is unlikely to offer a consistent and satisfactory long term solution to CH. Here are a couple of links to Circadin, a Melatonin drug available for short term insomnia treatment in people over 55. I am sure it can be borrowed for CH treatment.

There is allegedly a prescription Melatonin product available from a GP principally prescribed for jetlag, sorry I don't have the name right now. Also a Melatonergic antidepressant drug called Agomelatine (Valdoxan) that is great in reseting Circadian rhythm.

Cheers, Ben.

Posted in Untitled on 06 Aug, 2011 - 8:32 am

Sounds like hell you are going through there. I guess the hope of a CH free life would be keeping you going at the moment. AB and wound drains, it all sounds pretty scary.
I hope you are OK.

I am going in to discuss my implant in 3 weeks.
Matt your experiences with implants concern me greatly. I am a nervous person by nature and I am unsure whether my mental or physical health could survive what you are and have been going through. I am not bulletproof like some people and it worries me. Just the last 2 courses of Cortisone and their side-effects have nearly put me out of commission for good.

I have been CH free for 4 days and now I want to run the other way from Neurosurgery as fast as possible, I don't want surgery. But at the same time I know when the next CH bout hits, I will be begging on bended knee for a shot at an implant. I assume I can refuse to have one, but this might put future treatment options into jeopardy if Doctors think I am an uncooperative or non-compliant patient. What to do?
A dilemma I suppose many CH patients have faced, I am sure I am not alone here.

I hope this goes well for you Matt. I know what being hooked up to medical lines/machines for a long time is like. The restrictive and sedentary lifestyle you must lead whilst recovering can be mindnumbing and scary. I ran a lot of this sort of medical gear for my Mum when she had Cancer, not much of a life, but CH is different. I hope this does work for you.

I will basically be recounting your case to Neurosurgeons when I go in for discussions, it is the only relevant experience I have to draw from. Your case may be the only relevant experience THEY have to draw from when they attempt this implant op!
I know you did this solely for your CH condition, but thanks anyway for coincidentally being a trailblazer for us all Matt.
CH patients need to hear from more people in situations like yours, it is of great benefit to us all.

Good luck with it, keep us posted.

Cheers, Ben.

Posted in Wikipedia?? on 06 Aug, 2011 - 8:12 am


The Guru is fine! 4 or 5 years I have been under his medical supervision and I could not speak highly enough of him. (that link was a bad joke, that doctor is not my guru..)
My own frustrations with other specialists are long in the past. I refer to the current general frustration out there amongst CH site users with the discipline of Neurology itself.

A lot of people are very annoyed that their Neuros don't seem to be listening to them and solutions are not forthcoming, but things are on the improve. For every seemingly deaf and ignorant Neuro, there seems to be a young and informed upcoming protege who has more CH experience, so there is a lot of hope for the future. Every year more and more medical professionals become CH aware and that has to be a good thing.

It would be nice to see the back of some of the stoic "old guard" Neuros trained in the 60s. These are the ones who seem to lack the willingness to grasp the nettle and take on a CH patient. CH seems alien to their sensibilities, they seem to cast doubt on CH's validity. New ideas and approaches are obviously needed from fresh minds with fresh perspectives if we are to crack this thing. The present approaches and treatment options are clearly not working if we are resorting to discussing threads like this one...
The existence of this site alone is proof we need a fresh set of eyes to at least have a look at CH again.

I certainly hope I get fresh approaches in 3 weeks time when I am put back in front of a Neurosurgeon to discuss an implant. I don't want a shaky old man working on my brain!

Hopefully, one day this site will become redundant and stand as a record of an extinct disease and a monument to all those who suffered from it.

Cheers, Ben.

Posted in Wikipedia?? on 05 Aug, 2011 - 12:22 pm

Just a joke Peter:

I rest my case...

(Sorry, MYBRAINHURTS, we have hijacked a perfectly valid point you made and digressed..)
I just need a laugh, 6 months into this bout I either take the P*** and have a laugh or find something high to jump off. Apologies people, I think CH has driven me insane!

Cheers, Ben.

Posted in Wikipedia?? on 04 Aug, 2011 - 6:42 pm

Actually, I found a support group for those particular people ruminating on ideas surrounding this theory - of which I am not one.
"Willing to try anything" means I draw the line somewhere, I draw the line at using facebook as a research tool.

However, I will share it with the readers in the spirit of research and comical value:

There is a heap of research out there on it, but from what little I could stand it does not make pleasant reading, unless graphic descriptions are your thing.
Whilst CH is rare, it seems there are no shortage of w*nkers with sore heads, or people with sore heads who w*nk - either way.

I am yet to be prescribed "A good w*nk" by a specialist, surprising really given how some of them seem to have gained universal personal experience and professionalism in this area. I suppose this lofty position is attained by the completion of a compulsory basic training module at med school these days...

Like anything else in CH it should be studied and proven.
Double-blinded clinical trial anyone?


Posted in Circadian Solstice??? on 25 Jul, 2011 - 6:47 pm

Hi to all,

They're back. 72 Hours rest I think I got. A very welcome break.
The aforementioned Voodoo priestess got out her pin (or Garden stake) and resumed probing a doll of my likeness in the right eyeball. Still, I am now ready to go the distance to Nov-Dec like I usually do. Well, as ready as anyone could be, I suppose...

I think Peter is right. My Hypothalamus is knackered.
The "Secret life of your Bodyclock" documentary mentions having a 20 hour bodyclock, or a 25 hour body clock. This could be the problem. I need to look into light therapies.
I did notice a pop. But maybe like a squashed tennis ball - it popped back out again...

My CH diary inconsistencies were noted by my own observations, then confirmed by those of my specialists.

I collected as much statistical data as I could on every CH attack for many years.
Date, time, Time of onset, severity, action taken, medication used & dosage, outcome etc etc. We were all in agreeance that what it showed after a decade, is that statistically I was only slightly more likely to sucessfully predict the precise time of my own CH attack than to win division 1 X-lotto.
Thus; consistently inconsistent - totally unpredictable CH for me.

At this point I would usually say "Bring on the implant"
but given Matt's experiences, when I am capable of thought - I am having second ones...

Here we go again. Woo-hoo...

Cheers, Ben.

Posted in Circadian Solstice??? on 24 Jul, 2011 - 9:00 am

Hi to all,
I just looked back at my original post that started this thread. It appears that this CH bout of mine started toward the middle to end of February, when I first saw March flies appear. I can't say exactly what day it started as my CH sort of fades in over a few days or weeks, I don't keep diaries anymore. I would estimate my CH bout start date at approx feb 20 - exactly one month before the March Equinox. I remember then that I noted a shift in the colour of daylight, temperatures started to drop a little, a seasonal change was apparent to me. Within 1 month of my CH starting up, the leaves of the grapevines had browned and were falling, signalling oncoming Autumn.

Since then I have been belted with anything from 1 attack up to 7 per day. I have had the rare day off, maybe 5 or 6 days away from CH in as many months. Been on and off Cortisone twice, trialled Gabapentin, Agomelatin, Cymbalta. Dropped Dothiepin from my selection of drugs. All to no effect really. The attacks have been consistent, unabating and severe, all the drugs did was cause rebound attacks when they wore off. I have just about burned a hole through my stomach by taking Imigran FDT washed down with 900mg Aspirin, taken for breakfast on an empty stomach. The whole thing has been very painful, inconsistent and barely manageable. Actually, it has been anything but manageable - totally out of control would best describe this bout. Just a few days ago I was ready to pull the pin on it all, hence my post seeking advice and help.

On 21/7/11 I noticed a change in colour of sunlight again. I could smell a change in the wind. This is coincidentally exactly one month after the 21/6/11 Winter Solstice. The daylight hours have been getting longer since then. The Earth seems to have shifted enough through it's lap around the sun that we are now experiencing a seasonal shift towards spring. Nature knows it, in the last 2 days I have spotted flowers opening, weeds dying, spring lambs in the paddocks and the arrival of insects and moths I have not seen for some time. It seems obvious (despite the cold temperatures in SA), that nature knows that there is more daylight. Another month and the green grasses will start to die off as we head for the Northerly winds and higher temperatures going into Summer.

I have also not had a CH for at least 48 hours. Still some minor residual head pain. I am looking at 72 hours CH free, which has not happened since Feb, not that I can remember much anyway... A couple of days ago it was like something did go "pop" in my head, it felt like a cool seabreeze was flowing over my brain - relief at last.
I dare not speak too soon, CH is a fickle beast and will return when it is good and ready. I am leaving my status as red. I have become partly superstitious about mentioning CH remission out loud, like some Voodoo priestess is listening somewhere and will overhear me speaking of my relief, only to resume stabbing a doll of my likeness in the right eyeball with a red hot pin...

It is still only 5 months of CH, I am usually looking at 9-10 months in a bout, this could be a short breather, I hope not. 5 months feels like forever, but I remind myself that astronaut Andy Thomas spent the same amount of unscheduled time floating all alone in a rusty old tin can (MIR space station) circling around and around the Earth. Things could be harder...

Thanks to all who chimed in with some support when I needed it the most. You know who you are. I appreciate the responses more than I can say.

My CH may be back 30 seconds from now, but I have enjoyed the break, recharged the batteries, got my head screwed on straight again thanks to you all. Although tired and sick of it all, I feel slightly more prepared if the bastards come back anytime soon. I am waiting on discussions concerning a nerve stimulator implant, but Matt (Silent Planet) has been having some terrible experiences trying to get an implant successfully into the body and functioning correctly long term, this has put me off the idea despite the frequency and severity of my CH condition. (Fingers crossed Matt, I hope it sticks this time...)

Interesting to note the timing of my CH bout in relation to length of light/dark cycles. Maybe I have finally dialled in on what Neuros laughingly call a "seasonal" factor. But looking back over old diaries, my record is consistently inconsistent. I have never understood the whole "same time every day" comments on this site, I very rarely have a CH attack at the same time of day.

This time of year going into spring, most specialists will soon be looking at allergies and histamine levels and trying to figure out what pollen from which offending flowering shrub could be an allergenic cause for headaches. This may be consistent in those with Hay-fever, but my CH does not fit this cycle. I am slowly becoming more certain about theories around the lengthening or shortening of daylight hours which could affect my Hypothalamus and hence everything that causes the chain reaction that leads to CH attack. Maybe this will help me better treat it, who knows?

I am off to look into light therapies used in Seasonal Affective Disorder. If it turns out to be as simple as buying some dark curtains, a particular colour light for my house and using electronic timers to simulate my own light/dark cycle I may just do that. With the right calculations, I may be able to trick my Hypothalamus into thinking that the days are always getting longer, anyway - an experiment for me and a highly theoretical one at that. I will let readers know how I go, if I follow up this outlandish idea. You can tell I am desperate!

Cheers, Ben.

Keep those experiences coming in!
Has anyone else experienced more CH or remission since the equinox?

Posted in Circadian Solstice??? on 21 Jul, 2011 - 1:17 am

Hi to all,
Still trying to get some sleep?
Hey, I hear there's a new bedtime story out. Its a book about going 'to sleep'.
Its not for everyone but it could help some parents with getting their children to sleep, or maybe not. The title articlulates the feelings of the driven psychotic, insomniac parent rather well. Our own Noni Hazelhurst from Playschool has read this bedtime story for us on youtube. Samuel L Jackson did an audio book version. I think a few of you know what book I am talking about. I reckon my bodyclock would instantly reset itself if I had Mr. Samuel L Jackson read that book at me at my bedtime...

Who knows, this could be of benefit to Circadian Rhythm in some children and their parents.


Just kidding people, if you are not offended by the "F" word, then have a look over on youtube. I must admit, even between so many CH attacks, this was a huge laugh I needed so much. A hint - it is written by Adam Mansbach.

Cheers, Ben.

Posted in Untitled on 20 Jul, 2011 - 9:02 pm

Hi Benny,
Beware the drink of Jack! This is what we used to trigger my CH in a clinical trial of O2. It didn't work and I spent 8 hours in a hospital bed for nothing, but next time I took a can of warm South Australian beer! (vomits) That did the trick. Everyone in the ward thought it was a huge laugh, someone sittin in a ward gettin hammered (with 1 can?). The nursing staff wanted to join in, next time I have to take a slab!

Interesting to read about the nerve block. Is this the SPG (Sphenopalatine ganglion radiofrequency ablation nerve block) procedure?
I am very curious to know because I am booked in to discuss surgical options in August as well. We are primarily discussing an electrical nerve stimulator implant, but I just know they will be throwing other options around, including nerve blocks. So I could use some input from those with personal experience.

I am desperate. I am 6 months into a bout that will probably last the usual 9-10 months out of a calendar year. Having anywhere from 2 to 7 attacks in 24hrs currently. I have tolerated this since birth and I am 35 now, getting pretty sick of it all. (whinge, whinge, yeah I know...) Using Imigran FDT 50mg tablets (per attack basis), Imigran injections if severity is over 7-8, Soluble Aspirin 900mg at onset of attack.
(Please don't worry about suggestions for drugs, I have trialled about 60 of them now, had enough. My specialist is a Pharmacologist, we have this area well and truly covered.)

I came here to the site to offer help, but after contemplating ending it all today (something I never usually do) I am seeking help from others here for the first time.
Kind of Ironic that yesterday I got Roger (Admin) to post some links to SANE and Lifeline on the homepage for anyone feeling suicidal. I can't seem to follow my own advice and give them a call. I just don't have the strength to explain 30 years of B.S. to a phone counsellor today...What could they possibly do for my CH anyway?
Anyway, I am drifting off topic here.

So, 2 years remission from CH by using a nerve block.
You are going for this treatment again?
Was it worth the pain/inconvenience/risk VS the benefits gained?

Your input here would be invaluable.
Anyone else, please chime in.
I know I have been handing out advice for way too many posts, now I am asking for some, especially from people who have had successful surgical outcomes for CH.

Please help!

Cheers, Ben.

Posted in Circadian Solstice??? on 18 Jul, 2011 - 8:29 pm

Hi Hadenough,
Welcome to the site. Sorry to hear you are in trouble with the CH attacks.
In answer to your question, yes, in my opinion you can reset your bodyclock to some extent. I find a 14 day course of sleeping tablets (Temazepam) taken at the same time every night (say 8.30pm - 10pm) most helpful. After 14 days or so of going to sleep at a regular time you will find that your body may start to adjust, this may help underpin any remission from CH. 14 days of Temazepam is not likely to cause harm or dependency.

I ditched the alarm clock. Waking up in the middle of the night and letting my brain know what time it was by reading the clock created all sorts of subconcious expectations. Sometimes I would wake at what felt like 5am, but when I checked the clock it was 1am, this seemed to knock my head and bodyclock around. I turned my alarm clock around to face away from the bed where I cannot see it. This was a major improvement.
Now if I wake up at night, the only information my brain gets is "Its dark" and I can easily go back to sleep within seconds. If I was to wake up in the dark and read the clock only to realise that I have to get up in 90 minutes, I may start to worry about this (work, life, stress etc.) instead of easily drifiting back to sleep. Just my anxiety there I think...
I found that having a clock within visiual distance while sleeping to be very counterproductive for CH. I now get up when "Its light" and not before. You would be surprised at how accurate my routine has become with practice. I usually wake up within 15 minutes either way of a nomiated time - say 7am. Remember, your alarm will still go off, I think there is no real need to know that it is 3.16am, what can a brain usefully do with that information at that time of day?

Melatonin is your natural sleeping pill, the hormone that makes you nod off when there is no more daylight. Melatonin is used to treat CH in some patients. There is a Melatonin product available for jetlag. There is also a licenced Melatonin product possibly available in Australia called "Circadin" that may reset your bodyclock. Unfortunately it is not listed on the P.B.S. I am unsure of the costs involved. Here is the lowdown, don't let the age requirements scare you off, in CH I think this drug is worth a try:

Here is the NZ data sheet for Circadin:

Once properly informed of your CH circumstances, your GP or specialist may be able to write a private prescription for you for this drug Circadin. It is a good alternative to Benzodiazipines like Temazepam, which do have a small risk of abuse or depedency.

There is also a new Melatonergic anti-depressant called "Agomelatine" or Valdoxan, which may help. I found it very useful in the short term for resetting one very hammered body clock. $62 for a 1 month supply - Check it out:

Remember - I am not a Doctor, check with your GP and follow their advice closely if considering any of these medication options.

Hope this helps.

Cheers, Ben.

Posted in Botox personal life saver! on 18 Jul, 2011 - 10:53 am

No worries Cleo, I gave the Catalyst program its own links on a new thread. Featuring Peter Goadsby demonstrating Botox injection for headache. Some support there for your experiences and theories surrounding botox in headache conditions.
I thought a new thread with a title mentioning Goadsby may get some more attention than this thread.
Good luck with it all.

Posted in Circadian Solstice??? on 18 Jul, 2011 - 1:45 am

Hi to all,
I am unsure who saw the BBC documentary - "The Secret life of the Bodyclock" that aired recently on SBS1 TV in Australia. There have been no responses as yet.
Here are some links to the same documentary (in 4 parts) for those who are interested, overseas with no SBS, missed it or just plain forgot:

I watched it on SBS. No great revelations or discoveries to report on the CH front unfortunately. Yet another documentary goes by without mentioning the term "cluster" anywhere. But there is some useful information in there on the part of the brain that controls nearly every aspect of your body. This is of course the "Hypothalamus", another medical term that did not get a mention in the program. The most relevant sections appeared to be on vasodilation, blood vessel relaxation, blood pressure changes and the excretion of hormones like Melatonin. This program will help those with CH to educate themselves around theories involving routine, sleep patterns and light/dark cycles. Still definitely worth a look for the educated CH patient, researcher or the just plain curious.

Cheers, Ben.

Posted in Pr. Peter Goadsby demonstrates how Botox is injected for headache. on 18 Jul, 2011 - 1:31 am

Hi to all,

See Professor of Clinical Neurology Peter Goadsby carry out the procedure for injection of Botox for use in MIGRAINE, lifted from the Australian Broadcasting Corporation's "Catalyst" science-based weekly news program. CH is not mentioned.
(Interesting to watch as it is differs slightly from the Botox injection procedure used in my CH condition)

VODcast downloads available for a short time:
Botox for Migraines 07/07/2011 available in WMV and MP4 video formats:

Watch the story online at the ABC's STORY ARCHIVE
Thursday, 7 July 2011
Botox for Migraines

Some further research links on Cluster Headache as listed by search result from the "Catalyst" site:

Cheers, Ben.

Posted in Cortisone - unexpected side effect on 12 Jul, 2011 - 5:35 pm

Hi to all,
Much has been written on this site about Cortiscosteroids, namely Cortisone.
The drug goes by some other trade names, Prednisolone, Prednisone, etc.

From time to time Doctors are left with few other options than to use this drug to stabilise severe and chronic headache conditions. As we are all aware the drug has a significant side-effect profile. Many of us who have used the drug are familiar with some of the more common side-effects and the warnings contained in the literature we receive from Pharmacists as the drug is dispensed.

I am not here to open up yet another discussion on the merits of Cortisone for the treatment of cluster headache, that topic has been adequately covered in other threads. I am here to warn users of Cortisone of an unexpected recent side-effect that I experienced.

After 2 separate dosage regimes in as many months - 50mg, tapering off 5mg per day to zero in 2 roughly weeks my immune system became suppressed. Cuts were not healing well, I picked up a killer cold/flu that would not get better without antibiotics, then I started to get a lot of red spots around my shoulders, neck, scalp and back. At first I thought it was a bad case of acne, after all, my system was run down with a cold, taking antibiotics etc.

Then the penny dropped, the spots started to look like pimples but would not pop, they were blisters. I had chickenpox.
I did not catch it from anyone, nor did anyone around me catch it from me while I had it. I had already had my first full blown case of Chickenpox ay age 20. I knew that the herpes virus that caused it would reside in my spinal cord for life and perhaps present in old age as shingles. What I did not know is that Cortisone can suppress a body's immune system so much that the virus flares back up from its previously dormant state and attack. It does not matter if you have already had the virus, it can occur a second time in adulthood - it just did in me.

So whilst at my worst, crash-landing back into 5-6 rebound CH attacks per day from coming off Cortisone, with a killer flu - I get Chickenpox on top of it all. It was over 2 weeks before I realised that I had Chickenpox, if I had got in earlier, say in the first 48 hours after seeing the red spots, a preventive drug could have been used - Valaciclovir.

Whilst I can't find much on links between Cortisone and triggering Chickenpox, my GP and specialists seemed to react as if it was a reasonably common occurence. An article on Cortisone, mentioning exposure to viruses and vaccinations whilst taking Cortisone:

So Cortisone users, watch out for unexpected or unexplained flu-like symptoms accompanied by unexplained red spots or blisters! It could be chickenpox.
It is one hell of a medical situation you do not want to be in mid CH.

This is my personal experience and should not be taken as medical advice.
If you have complications with your medications or think you may be experiencing any unexplained side effects or possible viruses, please seek professional medical advice.

Cheers, Ben.

Posted in Untitled on 12 Jul, 2011 - 5:02 pm

Good luck with it Matt.
Thinking of you, I hope things go OK for you.

Cheers, Ben.

Posted in Cronic sufferer considering Trigeminal clamping.... on 12 Jul, 2011 - 10:36 am

Things have progressed a little in the last few years from some of the now outdated medical procedures previously recommended in CH treatment. I too have faced the same treatment options you are talking about. Destructive and irreversible neurosurgical procedures. If you can get into a Neurosurgery department in a major public teaching hospital as an outpatient, there may be some other new options available for you.

A no obligation discussion with an informed and cautious Neurosurgeon should be engaged in, there are always new methods and advances being made. With specialists I have discussed the severing trigeminal or occipital nerves, possible cauterization of these same nerves too. The medical outcomes from these particular procedures do not look promising and from what I hear and read these procedures are being phased out.

I hear Neurosurgery can carry out similar less invasive procedures using radiological techniques. That is "nuking" these nerves with a powerful accurately focussed beam of Gamma-radiation and does not involve the major surgery mentioned in the previous procedures. This is still irreversible and destructive. You do not need to go to Thailand for any of this.

Gamma knife surgery:

Here are a few other ideas I have had thrown around in my case:

Occipital Nerve block:

SPG stimulation:

Hypothalamic Deep Brain Stimulation:

Before commiting to an irreversible and destructive procedure that may further decrease your quality of life, (Yes this is possible. Its hard to believe, but things can actually get worse) you may prefer to consider less invasive and even reversible procedures like an electronic nerve stimulator implant, if that fails at least you are only back to square one, you still have the other more destructive options left if this fails:

You also mention "Had the pills". I don't know what drugs you have trialled, but if my experiences are anything to go by (30 years CH, 60 odd drug trials) there is always another drug or other option out there to try. Hopefully there is a drug you are yet to find that works for you. Finding an experienced specialist who knows and can prescribe all the known CH drugs is near impossible, but when you do, I swear you will find at least some relief my friend.

A list of medications you have tried would be useful at this point, I am sure I can locate some drug treatment options that you have not yet tried and possibly get you some relief.

I realise you are probably well sick of it, but perhaps emergency medical intervention should again be considered at this point. Surely there is a GP or specialist, even ER that would get you into a hospital bed and onto IV Prednisolone at this point. At least access to abortive medications?

These are all very serious medical and personal decisions to consider. Anyone considering these surgical procedures should talk with family, friends and of course consult closely with their GPs and specialist healthcare professionals.

Remember, as usual - I am not a Doctor, this is not medical advice, just my personal opinion and a few links that will hopefully help this clearly very ill person out of a bad situation. I encourage readers to further investigate and research these potentially scary procedures, these are just a few of many links to research on these topics.
There is much more information available.

I hope this helps.
With some options comes the possibility of some hope of relief.

Cheers, Ben.

Posted in Botox personal life saver! on 11 Jul, 2011 - 9:27 am

Hi to all,
Here is some information on a story that appeared on an Australian science based TV program called "Catalyst". It airs on ABC television in Australia. On 7/7/11 the ABC broadcast a 7 minute story about the use botox in the treatment of Migraine headache, featuring Dr. Peter Goadsby demonstrating the injection procedure and including a pile of other information.

Alas, it does not mention the word "cluster" anywhere. sigh....
When are they going to do something on CH? The story is still relevant.
To be fair, the site does provide some links to other CH information:

Anyway, here are some links to the botox in migraine story, you can search the website for previous episodes on pretty much any science content you can think of, a good resource.

A link where you can watch the clip:
A link where you can download the clip:

(Some internet ISPs within Australia list the ABC's vodcasts and ABC iview features as unmetered content, so in a lot of cases you can watch or download a program on iview and you do not incur any data usage through your account with your ISP. This could be a bonus for you, check with your ISP for details.)

Cheers, Ben.

Posted in Botox personal life saver! on 09 Jul, 2011 - 1:21 pm

I have heard of IV Lignocaine/Lidocaine treatment for refractory Cluster Headache before. It does show up fairly regularly in the masses of literature I sift through.
I have never had this treatment before and I suspect my specialist has some good reasons why this drug was not used in my case (10 days occupying a hospital bed for one). I will have a dig around and see what patient accounts, clinical trial outcomes and any other data on the drug that I can find. We need a new thread specifically for IV Lignocaine (I am kinda trying to stay on Botox here) then everyone can discuss their experiences with Lignocaine.
Yes it is an area of treatment that has been overlooked by people like me on the site, sorry Heather I should have responded and dug something up earlier, I know how long you have been reporting relief from Lignocaine. By now it probably seems like nobody is listening!
I am on it! I will talk to my specialist and see what the official story is from him regards treatment of CH with this drug. If you start a thread on it Heather, I will chime in with my research in a couple of days when I have completed it.

Stay green!

Cheers, Ben.

Sorry Cleo - we hijacked your Botox thread...

Posted in Botox personal life saver! on 09 Jul, 2011 - 2:50 am

Sorry for giving you grief over the botox industry. My comments were more directed at dubious industry practitioners rather than yourself. I thought we may have had a dubious practitioner masquerading as a patient drop in on the site for some "Product placement" or "Suggestive selling" as often happens with spammers on forums. Some advertisers/spammers even use automated software to carry out such tasks with ruthless efficiency. Nice to see we have a real person here.

Your first post was surprisingly well written in a manner not entirely unlike botox advertising rhetoric and made me suspicious that we had a spammer on the forum.
I cut and paste your first post into google and got so many hits (search results) on the phrasings you used that are very common in the botox advertising literature. I was just trying to protect the desperate and unwitting CH patient from having their condition made worse by adding to a patient's problems by being ripped off. Things also work a bit differently in our health system in Australia, we seem to have tighter regulation of Botox use, due to the public Medicare subsidised nature of our hospital systems. Sorry about that, I was trying to do the right thing by others, especially after my own experiences with Botox use in CH.

Have a look at the International Headache Society's (I.H.S.) web based application, now provided in the links on the left. You will find the diagnostic criteria that specialists use to properly diagnose headache conditions. The home page lists 3 main headings for headache condtions, under which you can search for your own symptoms and see what criteria your headaches fit into. There are many conditions listed. If you are persistent with the site, you may be able to separate Migraines (over 3 hours duration) and CH from possible cervical spine or other causes. This site may help you narrow it down a more appropriate or effective treatment plan for your headaches.

This one sounds more like what you describe in your posts. The duration just seems too long for CH. In a lifetime of CH I have never had an attack that lasted 7 hours. I have however managed to have 3 full cluster attacks from onset to resolution in the same time frame of 7 hours. This is consistent with the frequency of my CH which can reach up to 7 or even 8 attacks per 24 hours. I have had Migraines that lasted over a month aswell. So I know where you are coming from. Our bodies cannot read the text books and conveniently fit into any one criteria. Terribly inconveient I know!

This link pretty much covers most of the CH patients conditions, by their own accounts contained in their posts. If you click on the menu here - "3.1 Chronic Cluster Headache" you will see the additional criteria required to be classified as chronic.

Then theres all the drug trials we have had to collectively go through to prove that we are "intractable" (Non-responsive to treatments) - A quick definition for the benefit of readers following the thread:

Intractable –adjective
1. not easily controlled or directed; not docile or manageable; stubborn; obstinate: an intractable disposition.
2. (of things) hard to shape or work with: an intractable metal.
3. hard to treat, relieve, or cure: the intractable pain in his leg.

These are all the criteria I had to meet before I was allowed Botox for CH here in Australia. Chronic, Severe and Intractable CH was my diagnosis after decades of not knowing exactly what was wrong with me. Unfortunately Botox was unsuccessful for me. All it achieved was the complete paralysis of my right eyebrow for 5-6 months, quite amusing for some people around me...It still appears ineffective for most CH patients in the long term, not to mention expensive.

The outcomes from a clinical trial of Botulinum Toxin injection for the treatment of CH:
(lifted from the link provided earlier in the thread)
There were 7 chronic cluster headache patients.Botulinum toxin was ineffective for 3 of the patients. The injections were moderately effective for 3 of the cluster sufferers.One patient had dramatic, immediate relief that lasted for 3 months. There were 3 episodic cluster headache patients.One had complete relief, one experienced moderate relief, and the third achieved complete relief with his first set of injections, but only moderate improvement one year later, after the second set of injections.

Good luck looking around the site, I hope you are able to dial in on specifics of your own condition, some relief may hopefully find you!

Cheers, Ben.

Posted in Circadian Solstice??? on 09 Jul, 2011 - 12:48 am

Hi Lauren,
I don't know if you checked it out or not earlier in the thread , but I pasted in a link to wiki on Seasonal Affective Disorder or S.A.D. I will throw it in again just in case your or anyone else are interested in looking into it.
The article covers a lot of different and complicated ground. But the first section sounds a bit like what you describe in your post. As you probably know there could be a million reasons why anyone might feel a bit down in Winter - vitamins, diet, sleep patterns, illnesses and colds etc. The hypothalamus controls body temperature, hunger, thirst, fatigue, sleep, and circadian cycles. It is also thought to play a major part in triggering cluster headache, there is much growing medical evidence to support this:

I had a look at your post on Pituitary gland. I don't know much about this, but it is getting into a complex area of brain function that us mere mortals have little chance of fully understanding without a medical degree. There are so many things going on in the brain with CH.
I would recommend seeing a specialist (Neurologist most probably) at a public teaching hospital attached to a university (is it Royal Brisbane Hospital up there?) then you will get access to some diagnostic tests and scans. I am sure it would give you peace of mind to rule out other conditions like diabetes (if you have low blood sugar). I am really out of my area here, but I thought low blood sugar was possibly associated with the pancreas and it's ability to produce insulin. I could be wrong, I am not a doctor.

Even though we don't fully understand Cluster Headache, a specialist could help rule out many, many other possible causes. I personally have seen similar symptoms of unexplained low mood (except the CH) in my own Mum who was very depressed for over 20 years and finally found out that her thyroid was stuffed. It was a simple routine blood test that picked it up. She now takes Thyroxine to compensate, she will have to do this for the rest of her life, but it has fixed her up. That's thyroid anyway, somewhat off topic.

It helps to go through all the tests with a specialist to rule out all the other possible causes of any conditions and isolate them from the CH issues. I would recommend it.

If your'e looking for a cause for your CH then you are not alone. I am lucky enough to be a patient under the supervision of one of the world's leading specialists in CH research. He tells me regularly that medical science is yet to determine a cause for CH, but our understanding of it gets better every day, so don't go driving yourself mad looking for a cause! If we do find a definite cause, we will soon have a cure. We live in hope...

There are so many promising treatments in the pipeline, apart from enduring the head pain,
it is an exciting time for CHers with the promise of hope just around the corner.

Wish you well, I hope the CH leaves you as the daylight hours get longer!
Keep us posted.

Cheers, Ben.

Posted in Circadian Solstice??? on 08 Jul, 2011 - 5:36 pm

St Peter,
Wow, it sounds like your'e "go to sleep" mechanisms are reversed or something strange. Maybe the production of sleep hormones like Melatonin works differently in your case. I suppose after 25 years of night shift, a body and brain will make adjustments.
In a way your'e lucky that you were able to identify that you were a night owl a long time ago and take full advantage of that. I have tried many different shifts in different jobs over the years, I could not find any shift that put me at an advantage CH-wise.
As most CHers know, the brain does have amazing plasticity and the body can adapt quite well to change.
Its all very inreresting how our accounts vary greatly from person to person.

This thread is not here to prove or disprove any fixed ideas or theories on circadian rhythm, just to take on board patients' experiences and build up some statistical and anecdotal evidence from CHers, then see what the data shows - if anything.

I know we are probably not going to singlehandedly uncover the mysteries of CH on this thread, but so far the Doctors (all non-CH sufferers) have had the monopoly on attempting to solve these mysteries. Never before have patients been able to collect, share and compare their own data, making this forum a potentially very poweful tool indeed. (Thanks again Roger) We can add our experiences as patients where medical trials, surveys and consultations don't collect or use this sort of information. This could prove quite fruitful for CH research, depending on the quality of data posted by users. The internet by design now allows all CH patients to get together and collate their own CH experiences in one place - something Doctors have found very expensive and problematic to even attempt to carry out.

So far on this thread the patient accounts are looking consistently inconsistent from one another, but this may be an answer in itself. As the body of patient based evidence grows this may help to confirm or dispell any links between Circadian Rhythm and CH. It may not either. Who really knows?

That's what it is here for!

Keep your experiences coming in!
Any personal experiences to offer here are most welcome.

Cheers, Ben.

Posted in Untitled on 07 Jul, 2011 - 1:17 pm

Sorry folks,
I forgot to mention, I am in South Australia. (GMT +930hrs)
Times may vary elsewhere, they mat not even run this program in some states, I don't know for sure. Check your local guides for correct times and details. Sorry to those who are overseas and cannot view the program.

Cheers, Ben.

Posted in Im At the end and cant keep going on 07 Jul, 2011 - 1:11 pm

No worries Stretch, Pr. Rolan will not let you down!
Good news indeed!


Posted in Untitled on 05 Jul, 2011 - 8:42 pm

Just alerting people to details I posted on the "Circadian Solstice" thread.
SBS 1 is running a documentary called "The secret life of your bodyclock" on Tuesday 12/7 at 7.30pm. Details on the aforementioned thread.

This post here is just a "new post" acting as an alert, or headline, so people know the program is on. Please continue discussion about Circadian Rhythm and this documentary over on the "Circadian Solstice" thread. We are working up some interesting stats, theories and discussion over on that thread.

So please don't extend this thread by posting here! It was never my intention to start another distraction or diversion from the excellent input that is happening over on the other thread. smile

Thanks everyone!
Should be interesting, depends how relevant the program is to CH I suppose...


Posted in Circadian Solstice??? on 05 Jul, 2011 - 8:30 pm

Hi to all once again,
For those following this thread who are interested in further exploring the mysteries of Circadian Rhythm there is a television program airing on SBS 1 on Tuesday 12/7 at 7.30pm called "The secret life of your bodyclock"

There also appears to be a Youtube link to a BBC2 program of the same name in 4 parts:
I don't know if these are the same program, the SBS version has not gone to air yet, as at the time of this post.

This documentary may be of interest to those who feel there is a connection between CH and sleep or light/dark cycles and how they affect us. It should be interesting to read some feedback from other users on what they think about Circadian Rhythm and CH after the show. I doubt this show will address CH specifically, despite years of closely watching medical and other documentaries I am yet to see or hear a reference to CH in any television program.

For those who miss it, I believe there is a "catch-up" feature where it can be viewed via the SBS website for a period of time after it goes to air on TV. I could be wrong, I have not checked this. There's always Youtube!


Looking forward to some discussion if this program sheds any new light on our condition(s).

Cheers, Ben.

Posted in New features on the left-Check 'em out! on 03 Jul, 2011 - 11:22 pm

Hi to all,

We have 3 new wonderful links on the left in "Medical Info" for users, courtesy Roger.
Thanks Roger!

The International Headache Society's web-based application, where newbie users can search the I.H.S. diagnostic criteria to really zero in on what specific headache condtion they think they might have.

The Pharmaceutical Benefits Sceme website, where users can obtain information about their drugs, prices, availability. Also PDF documents of the drug "consumer information" leaflet and drug "Product information" - all very useful indeed.

The National Prescribing Service website where you can find out about medicines, practitioners and mauch more helpful information on how the Australian Health System works.

After repeatedly having good links to good research moved down the chronological heap of posts and lost to time, it was becoming difficult for me to make this new information available to new users. I had to manually find the sites each time and cut and paste links for new users.
Not a problem, I enjoy helping others gain access to timely and accurate information and resources to help them better understand their CH conditions.
But I gave Roger a PM with the links and they were up and running in no time, excellent job Roger.

I must say, compared to the dozen or so other bulletin boards I use, this one runs like a well oiled machine and is put together in the most logical and easy to use fashion. So many PhPBB sites are so cumbersome these days...Then there's the ads.
I must have won 450 plasma screens by now...

Anyway, I digest smile
Enjoy the new links.

Cheers, Ben.

Posted in Circadian Solstice??? on 03 Jul, 2011 - 10:44 pm


This is just the sort of info I need to trigger off new ideas, not only with me but other site users and my specialists who are listening carefully and taking notes. I only started the thread around Solstice because a friend mentioned the event's passing. I had also experienced a significant drop-off in CH attacks (6 a day to 1 a day) from out of nowhere (not complaining!!!).

But what you are saying reawakened me to the existence of all the other rhythmic cycles occuring in nature that affect light/dark and sleep/awake routines. There are other natural cycles that fit together roughly with some of these CH cycles too. You are saying you have bouts starting end of October and start of April. A factor I overlooked previously in the thread is the Equinox amongst many other things. I am sure there are many, many other factors surrounding this murky subject area. Barry might want to chime in here, his reported CH rhythms may fit some recognisable pattern here, I will have to ask him.

Without getting into a major and complicated astronomical debate, as I am no expert here, I understand that Equinox and Solstice both are events (days) where the measured daylight hours most accurately equal the measured dark hours within a 24 hour period. Or simply, equal day and night.

Check out the dates of these events on the wiki calendar in comparison with the severity, frequency or outright remission of your cluster headache symptoms, see if there is any pattern emerging in your condition that you think is any greater than chance or coincidence.

These events; best explained by the folks at Wikipedia:

I still think this article on SAD is of relevance to the reference material here, there are strong links with CH and Hypothalamus behaviour.
Particularly references to light therapy, Melatonin and a range of other symptoms often found co-existing in CH patients.

First Equinox of this year was on 20th March. (Strangely enough this is appoximately when my CH flared up and when I saw the first March fly for the year, around end of Feb) Next event was the aforementioned solstice in June. (My CH slowed significantly here???) There are still more dates of significance in the calendar year for CH patients to have an interested look out for. It will be different for folks in different parts of the world.

The date at which sunset and sunrise becomes exactly 12 hours apart is known as the equilux. Because sunset and sunrise times vary with an observer's geographic location (longitude and latitude), the equilux likewise depends on location and does not exist for locations sufficiently close to the Equator. The equinox, however, is a precise moment in time which is common to all observers on Earth.
END QUOTE------------------------------------------------------------------------------

Sometimes I think my Hypothalamus knows EXACTLY when "equilux" is, because my CH just about goes off like clockwork when I see a March fly appear here in Australia.
How do these flies know when to come crawling out at exactly the same time every year, give or take a few weeks??? My CH attacks always start around this same time, give or take the same few weeks.

Can you see what I am gettin at everyone?
Our bodies might be hooking into their own rhythms which once identified, could be used to better treat and manage our own CH conditions. For instance: We could be wound up to theraputic doses of our preventive drugs a few weeks before the predicatble cluster strikes. If I knew roughly what week mine were starting up, I know I would be stockpiled with drugs and have doctor's appointments booked well in advance.

It's hard to explain some of the seemingly intuitive theories around CH, this is why everyone's help is needed to add to the stack of evidence!

Thanks for your input and excellent ideas, keep 'em coming!
Very interesting indeed!

Cheers, Ben.

Posted in Botox personal life saver! on 01 Jul, 2011 - 8:57 pm

If your attacks are lasting up to 7 hours they should be easy to treat using the myriad of Migraine drugs available. There is usually very little time at onset of CH to wait for absoption of oral medications through the gastrointestinal tract, hence the Imigran injections being available. If I had a 7 hour attack in my brain, I would call it a Migraine and hit it with Imigran FDT, or Aspirin first. Then maybe explore options with a doctor, there are many more drugs out there to try.

Happy hunting.


Posted in Circadian Solstice??? on 23 Jun, 2011 - 8:29 pm

Mine started in Feb too and only backed off to 1 per day about 4 or 5 days ago, just as we hit the shortest days. We both had long runs by the look of it. I am still having at least 1 per day, but I don't expect this "break" in mine to last, my average bout is 9-10 months at a time so I don't think its over yet.

Your diary entries could be statistically showing that after the days start to get longer your headaches start to go away. Who knows? Speculation on my part there. Some of my suspicions are loosely based around some of the attitude/latitude (and the changes in light/dark cycle) theories you were talking about on a different thread Barry. I don't think we will ever know for sure if there are links between all these factors, but it's worth throwing some ideas around... I thought Solstice was a good place to start.

Remember, just because there is a change in season does not mean I am suggesting that people will have more attacks, less attacks, no attacks, resume attacks - anything. I am just asking people if they could tell us about any changes in their condition if there are any. I don't think anything will be conclusively proven, but some trends may become established, at least anecdotally.

Please keep the ideas rolling in!

Cheers, Ben.

Posted in Circadian Solstice??? on 23 Jun, 2011 - 8:21 am

Thanks everyone,

"My Brain Hurts"! A survey of diaries (smacks self in head) Why didn't I think of that? I should have done this myself, but I have never checked out the diaries. This is looking like an interesting area for discussion, especially going into the longer days. Interest is in precisely the areas everyone has mentioned so far.

Ch research is littered with references to Circadian Rhythm (sleep patterns), Melatonin (sleep hormone), length of light/dark cycle
and links to Hypothalamic function. (note light/dark cycles)

I am interested to see if other CHers notice any changes in the next few weeks/months. There may be some anecdotal/statistical evidence to gather and present to the specialists.
Please share your experiences and insight, keep them coming in!
Keep us posted!

Cheers, Ben.

Posted in Circadian Solstice??? on 21 Jun, 2011 - 3:14 pm

Hi to all,
Today winter solstice is upon us:

Date and Time of Solstice

Solstice June Solstice Dec

year day time day time

2007 21 18:06 22 06:08
2008 20 23:59 21 12:04
2009 21 05:46 21 17:47
2010 21 11:28 21 23:38
2011 21 17:16 22 05:30

Winter Solstice has the shortest amount of daylight in the year, the daylight hours get longer from here on in until December. A lot of people talk about CH this time of year.
There seems to be a trend in the CH research and amongst site users here that suggests that our body's Circadian Rhythm (, exposure to light hours, sleep and Hypothalamus function may all be some way linked as a possible causative factors in CH. There is a lot of speculation on the subject, but not much solid research yet.

I note after a small patch of relative silence on this site about 3-4 weeks ago, I can't statistically prove it, but people now seem to be reporting a lot more CH starting up, multiple cases on the same day sometimes on this site. I am wondering if anyone has noticed any spontaneous flare-ups, remissions or other changes in their CH status that they think could be attributed to a change in weather/light/sleep patterns?

After a 4 month run of attacks starting in Feb (the same week I saw March flies come out), having up to 6 attack per day, my headaches just dropped back to about 1 per day - 3 days ago. It is holding there for now where 50mg Cortisone could not. Weather, light or coincidence? Who knows?

It will be interesting over the next few weeks as the days get longer to watch and see what other CH patients report...

Any input would be appreciated, especially from travellers and people in other parts of the world as well as those who have "stay put" maybe we can compare experiences to build up some kind of map. Please tell of your experiences smile
Any input and experience is relevant and welcome, no matter how trivial!

Cheers, Ben.

Posted in Botox personal life saver! on 17 Jun, 2011 - 10:13 am

The Botox industry.

I note the cosmetic industry's attempts to muddy the waters and create further ambiguity surrounding Headache conditions and their product - "Botox". Anyone googling "Botox" will find many, many "Patient accounts" where Botox has been cited as some kind of medical "Cure-all".
The commercial interest is palpable in this area.

This "approved cosmetic" product is very expensive. Many dubious "alternative practitioners" are willing to find any reason to prescribe and to sell Botox to you, no matter what the reason or medical context. It can be prescribed and administered for cosmetic purposes in a private non-medical setting all within the convenience of a lunch break timeslot.
I doubt this is the case when used correctly in CH.

A study on efficacy of Botox on the treatment of Cluster Headache:

This is not a warning on the safety or merits of Botox as a product, it has it's own established safety record. Nor am I qualified to give medical advice on the subject.
However, I would be very wary of private clinics offering Botox for any type of "Headache condition". Health trends in Australia seem to follow US ones, I would hate to see a cure-all "Botox pain clinic" turn up in my local shops.

I am in no way attempting to scare anyone off the use of Botox in CH, if you are under specialist care and have the correct supervision, then I hope it works for you.
There is some evidence available that it may help to stop CH.
It does not seem any more effective than placebo from what I can find.

My trial with Botox in CH was done through a drug approval board, ethics committees, and a Pain management unit through a public hospital. Any potential risk/benefits were assessed on an individual patient basis. In my experience, Botox was a waste of time and a lot of health department money.

It was worth a shot in my CH condition after being intractable for so many years, but this "post" from Mexico Beach reads much more like a Botox industry advert than a patient account of chronic CH; a condition (not mentioned) that Cleo would need to be diagnosed with in order to receive Botox treatment in CH.

By all means - if it works for you, then use it!
Get correct approval for use in CH!
Just be wary of the sharks, always willing to part a suffering patient from their money.
They are out there, be careful...

Cheers, Ben.

Posted in Untitled on 16 Jun, 2011 - 12:14 pm

Good news all went well. I remember you mentioning landscaping? or outdoor work before. That had me whincing once I read the post-op instructions on the implant. No more heavy work for me either, I had to join the RAA in case I need a tyre changed. A big step for someone who has never needed to call a motor mechanic in my life.
Its one of the sacrifices that comes with this level of treatment I suppose... I hope it works.

Good to hear you can get the Bass out. When I am well I work on Guitar pickup development and am about to complete building my first guitar, hence the jokes/questions about picking up radio stations in ya head! As a lifetime technician/musician and CH patient, this implant and potential outcomes from its install really are a cause of concern for me. Hopefully it will enable me to play more music and build more guitars, because CH can't get much worse right now.

Whether it matters or not, I don't know. There is one young guy in line in front of me for an implant operation for CH. He is worse than me and needs it sooner, so I will have to wait.
I have researched the use of the unit in Australia in CH, can't find much on it here. I just find the same US clinical trial results collated in various differing ways. I have been talking tentatively with specialists about this unit for about 4 years now, all no-obligation of course. This cautious approach of researching, discussing and waiting has meant that I have narrowly avoided other irreversible destructive surgical procedures being used to treat CH. This has led me to the implant as a reversible option.

The best news I have heard is about centralising knowledge on CH treatments like the implant. So far, most Neurosurgery clinics around the world have had a very limited opportunity to perform implant surgery and attain a complex level of clinical understanding of the unit and how it is best applied in CH management. Say, for example - this op has been done 20 times for CH worldwide, then the knowledge gained by the surgeons was spread across the 15 or more clinics worldwide who "Had their go at it".
From what talk I am hearing, there is now a trend towards centralising these procedures and the knowledge gained from them. Better for all concerned. I for one, think it would be better for a patient to travel Australia-wide for treatment in a specialist clinic dealing with implants exclusively, rather than the patchwork arrangement currently in place where every 2nd Neuro knows "a bit" about implants - not everything, like they should before they install one.

I have been referred to a "Cautious and informed" younger Neurosurgeon who apparently has some clinical experience with implant operations. I may be the first to have one installed by this particular Doctor for CH, but it's nice to know he is familiar with the unit, the op and all the implant's other medical applications before they commence surgery. Much, much more promising than the talk 4 years ago - near retired Neurologists sort of standing around in corridors sratching their heads asking where the batteries go in...
So, things are coming along, keep your fingers crossed people!

Remember! The Guinea Pig can't say "NO".
We still can!

Keep us posted Matt, thanks for your time in doing so this far.
Much appreciated.

Cheers, Ben.

Posted in Untitled on 15 Jun, 2011 - 1:52 pm


Throwing up medication? Maybe you need a specialist to diagnose that issue first, then you can get some efficacy from CH drugs entering your Gastrointestinal tract.
Maxalon is usually the drug of choice for this, but please consult with a GP.

Cluster Headache is not a competitive sport.
I come here to help, not engage in the "Woe is me..." side of CH.
Yours was not the first, nor will it be the last childhood destroyed by CH.
We have had more than our share of CH rob us for one lifetime.

As part of my research, I gather documents and connect CH patients with medical information that may help them secure potential diagnoses, treatment and pain relief.
I was attempting to extend that same courtesy to you on this occasion.
I was not making light of head trauma, it is a serious medical issue.
I can find no area in my post where I trivialise your Head Trauma, whatsoever.
I have been around CH long enough to understand and to have personally experienced the over-riding urge to knock one's-self out. I was offering some kinship...
Sorry if this was misinterpreted.

My points were:
Specialist Hospital outpatient care is the correct place for CH diagnoses and treatment.
ER are not correctly trained, equipped or staffed to manage complex CH conditions.
A "CH aware" GP will be required for referrals, scans, prescriptions and advice.
Following specialist's/Doctor's advice closely.
Some support on your side from family, friends etc.

If you want to go it on your own and stumble from ER to GP and back for years, I find the medical profession will oblige. There will be many waiting rooms, lists, beds, cold bus-stops waiting there for you. Hey, you may even end up homeless, jobless, broke, unmedicated and intractable with 5-6 attacks per day living in a tent, as I did.
I know how much CH can take away and have barely survived it myself.
I assumed you may have taken solace in the idea that someone else knows how bad CH can be. Your atittude reminds me of me when I was younger. There will be many years of cynicism and pain ahead for those not willing to go the extra mile to seek and accept answers around CH. I suffered 10 years of my own ignorance too.

I am still doing my bit for medical science. I still put my neck on the line weekly participating in drug trials so others can benefit from the outcomes of these trials.
The specialist care I have access to (thanks to my persistence) affords me the position of trialling any new medications that become available to CH patients.
There are many trailblazing patients out there who undergo procedures for CH with little or no choice. Their combined experiences may be the key to developing a drug that one day gives you back quality of life.

Good luck with it all.

Cheers, Ben.

Posted in Untitled on 14 Jun, 2011 - 8:05 pm

Sounds like you should get onto this bloke pretty quickly.
A Specialist Professor in a major public teaching hospital is a good place to start.
Don't know who he is, but found good words about him on the site, worth a shot at this point...

Prof. James Colebatch, PhD, FRACP
University of New South Wales
Randwick, New South Wales & A.C.T

The Emergency room approach does not work well for younger blokes for a number of reasons, most of which you are familiar with. ER Doctors are trained to deal with life-threatening emergencies. The term "Headache" no matter how severe lacks the impact to get things moving in ER. Not many trauma Doctors are going to put their staff onto a "Headache" case. At this point, I usually experience a stream of bedside quasi-experts and grad students telling me all about what they found effective (for their little "headaches"...) from their Chemists etc. I get dozens of obvious questions about my CH - ALL of which could be answered by a cursory glance at my 3 inch thick medical file. Offers will come from nursing staff to GPs, anything from glasses of water/Ibuprofen to their best-friend's backyard aromatherapy business card. If you are lucky and get a real Doctor, you will get a CT of the head done to rule out the presence of anatomical anomalies like aneurism.
Maybe some treatment too, but I doubt it at this stage...

Emergency wards are not really equipped to treat CH any further than this. Preventive drug regimes should be discussed and supervised at outpatient level by a specialist. An Abortive drug like Imigran may be prescribed by ER Doctors, but seems unlikely in this setting. The best bet for obtaining an effective abortive drug is through a GP. The more I wind up and get louder in ER, the more they wind up until we are left with 12 security guards sitting on top of what was an undiagnosed medical condition, having made a “security issue” out of it by under-treating said condition and over-reacting to the patient…
Tuning ER into the correct use of O2 in CH is another issue altogether...

Once you have a prescription medication (non-opioid) and a GP letter explaining your condition/diagnoses behind you, people will be suddenly more willing to take your reports of pain more seriously and get around to treating it seriously. Let's not muck about - CH is very serious. In 35 years of CH management, I have never been prescribed an opiate stronger than Panadeine Forte. Opiates are largely ineffective on CH pain; most people on here will tell you this. Along with opioid use comes the unnecessary "Drug Stigma" that all young people must face. Things are not how they should be, but I suspect there will always be a cloud of suspicion around those using known drugs of addiction or dependency, whether their condition is legitimate or not.
If you avoid opiate use like "Oxycodone" and stick with the proven preventives/abortives - Nobody can ever question your position in relation to possible "Recreational" drug use.
I use only Triptans (Imigran), very expensive, very controlled and monitored. If I slip up with the authorities, I will know about it. But the most important thing here is the drug's record - it is safe, has proven CH efficacy, zero abuse or addiction potential in me. No Doctor should conscionably or morally withhold medication from a person who is suffering, once efficacy and suitability in the patient has been established. Nobody has EVER accused me of "Recreational use" of Imigran, despite some misconceptions in the wider community... Largely thanks to my avoiding Opiates for all these years, my position in relation to the procurement and use of CH drugs remains exemplary. There are no lingering doubts from Doctors about opiates, narcotics or other drugs of dependency in my file. I find It helps to have this possibility ruled out conclusively; it deters some lower level medical staff from straying down this often offensive and completely unnecessary line of inquiry.

In my experience as a young person growing up with CH, nobody will believe you. Most Doctors are still extremely ignorant of CH, the severity and complexity of managing the disease. Nearly everyone will question the validity of your claims. After all, everyone has “Had a headache”. They all thought I was "after a hit" - 35 years and 25,000 CHs on, still have not had one. I have always been denied pain relief, part of the territory unfortunately.
I was never believed when I needed to be. Many, many trips through dozens of ER, GP and specialist situations prove this. One advantage you have is your age and the times we live in. You will not have to endure nearly 20 years of undiagnosed condition, as I did. The term “Cluster” was not in common use in 1979 when I first presented in ER at age 4. It took until 1998 for me to hear the term first used in relation to my head pain. You have a diagnosis, a starting point, something many do not yet have.

I too have CH; it is chronic, severe and intractable.
It has given me trouble since 1979, runs for 9-10 months of the year, up to 7-8 attacks per 24hrs. My CH condition does not respond to the majority of available drug treatments. So, I have some idea how you are feeling.

One of the most important things to recognise or diagnose is the existence of acute unmedicated pain. Full stop. CH or not, unmedicated pain can destabilise any otherwise stable patient and can quickly become a potentially life-threatening situation for them or their loved ones. This sort of acute pain (as in acute, persistent CH) needs immediate medical attention and intervention. I would be seeking further clarification from an ER specialist (Neurologist maybe...) at the very least; presenting yourself before an alternative GP for a 2nd and 3rd opinion ASAP. Finding a "CH aware" GP can prove very difficult, but must be a less painful option to consider than knocking one-self out.

There are a few inconsistencies in your reports; I am not questioning the validity of your own claims at all, but more the actions of Doctors you have seen. Firstly, specialist care. In your posts find it difficult to isolate one Neurological condition from another.
I am no expert, but acute head trauma seems like one very isolatable, specific and treatable condition to me. CH seems like a separate condition also.

There are CHs without head trauma. Head Traumas without CH and practically every known Headache condition in between. Whilst there are many discussions on how exactly head traumas may or may not be linked to CH or the management techniques for CH, once diagnosed are still largely treated using the same methods. I am not opening yet another thread on the merits of "Head Trauma caused CH vs. Non-Head Trauma CH"; this topic has been well discussed elsewhere on the board. I include the current International Headache Society's Web-Based selection criteria for CH and its own "Top 10" search results on Head Trauma in relation to CH conditions for those following the research:

Search IHS Acute Head Trauma:

Ross, are there specialists across this? (2 separate conditions)
Got a Neurologist or Pain Management specialist on your side?

I have spent the better part of over 20 years shovelling drug trials down my neck, started back on "Lingraine" before you were born. (Anyone remember that?) Having had CH for a lifetime and recently completed my 60th (Yes Happy 60th) failed drug trial; I find it difficult to comprehend a GP ripping through a list of around 100 drug options in less than 7 years.
I have compiled a list of over 330 compounds used in CH treatment, I have used most of them, but I am not yet out of options for CH.

There is healthy discussion of drug options with a GP, and then there is plain dismissal on the part of your GP. My experience tells me that any drug when trialled correctly is likely to take a couple of months to prove efficacy and tolerance. There are simply so many available drug options that I fear many good options may have been overlooked or insufficiently trialled in your case. A CH specialist (Pharmacologist/Neurologist) is the person who should be pushing the situation for you here. If O2 works for you, you should have it prescribed. Simple as that, it is available through GP/BOC gases with a script. If Imigran works, you should have that drug prescribed. Anything that works for your CH and is proven safe should not be withheld from you in managing your condition. Something somewhere must have been overlooked. I know it must seem like you have tried everything, but I can assure you there are other options left. One of those drug trials has to have benefited, can be re-trialled or coupled up with other effective treatments to make a tailored CH treatment plan that works for your body and head.

The rudimentary ER combination of drugs you have been given smacks of inexperience to me. This is a very basic approach that is not sustainable, especially if the scripts are not forthcoming. It’s not sustainable because it is the wrong approach to long term CH management. There are reasons why that little cocktail may give you minimal relief in the short term, but my experience tells me that you need longer term solutions and fast:

1. A CH aware GP – no matter how many you have to see to find one. Don’t give up!
Someone who will believe you, write the referrals to the specialists and keep the scripts coming.
2. A Specialist – to push for treatment options and oversee you as an outpatient.
3. Support – either from family, friends or anyone who sees you and believes what you are experiencing.
If these things are in place it should be minimal time before you find some relief in the form of correct diagnoses and treatment.

If that little cocktail gives you ANY relief whatsoever, I would be trying 900MG SOLUBLE ASPIRIN (3 x Aspro clear) at onset of CH attack, from the supermarket. Often overlooked - often works on CH.

Remember, I am not a Doctor etc. etc.
Check with them before you do anything.
Just my opinion, not qualified...

Hope there is some help there for you.

Cheers, Ben.

Posted in Untitled on 14 Jun, 2011 - 5:00 pm

Good to hear Matt,
Take it easy in the next few weeks mate!
I am selfishly observing your entire account of this implant, facing one through the public hospital system I think will be very different to your experience. Although I hope not too much different. I look forward to discussing mine with RAH Neurosurgery dept. in August.

I am hardly in a position to speculate what it must feel like, but after reading as much as I can on these implants, I am holding my breath for you Matt. Like I am trying to avoid any postural changes that might make wires shift or causes infection. I hope you can endure the temporary discomforts in order to achieve the long-term benefits. It sounds like it must be better than CH already by comparison.

Straight in- straight ON for me, no trial stimulator apparently for me, but I have not had detailed discussions with specialists yet. I hope it works, I still want to be able to play guitar after the op. It's all I have left post-CH.

Good luck with the recovery Matt, thinking of you.

Cheers, Ben.

Posted in Untitled on 12 Jun, 2011 - 4:36 pm

Good luck with the recovery, be careful with that new device. It is a strange thing to have to be contemplating - my discussions with Neurosurgery dept. on my own implant begin in August. I hope it goes well for you. Better than last time anyway!
I watch with interest, thanks for keeping us posted.

Cheers, Ben.

Posted in Im At the end and cant keep going on 06 Jun, 2011 - 5:04 pm

Well done Stretch - 1/7/11? Already? Don't know how you did it that quick, but well done anyway.
Usual wait on getting into the RAH PMU is about 18 months.

Good luck with it, you have definitely gone to the right place and will not regret it.
These people are the ONLY ones in 30 years of my CH condition that know EXACTLY what you are going through. If that isn't enough, once you have explained your CH and they have asked more than a few questions, you will be treated at last. They seem to have ultimate power over hospital resources "in-house" and will get you whatever you need, or in front of whoever you need to see in record time.
CH is taken very seriously here.

Keeping in mind that my condition is diagnosed as "Severe, Chronic and Intractable", on the worse end of the spectrum. I don't expect you will be there for 4 years as I have been, but I have needed every minute of their help so far.
They saved my life more than once.
I have been an outpatient there for 4+ years now - not a narcotic in site.
Correct CH treatment does not require the use of such drugs.

Well done Stretch, rest easy as you can (CH permitting), knowing treatment is in the pipeline mate and closer than you think.
You are about to bear witness to the vast intellect and immense experience of the PMU team, excellent news indeed!

Cheers, Ben.

Posted in Untitled on 06 Jun, 2011 - 4:50 pm

Good luck Matt, thinking of you tomorrow.
Hope it all goes well this time.

Cheers, Ben.

Posted in Untitled on 31 May, 2011 - 7:54 pm

Hey Heather!
What big document would that be? I am perplexed!

Posted in Sandomigran on 31 May, 2011 - 7:44 pm

As Heather says, check with your Doc on this one.
I used Sandomigran a long time ago 1996-97, so my recollection is a bit foggy.
I remember it is primarily a Migraine drug, but is sometimes used in CH prevention.

The datasheet for your reading pleasure:

Mine was called Pizotifen, same drug just the active ingredient name rather than the trade name. I do recall being advised to take the drug in the morning. By the evening, I was getting bad CH attacks as the drug wore off. What I experienced was I think - a rebound CH attack.
These can happen as a drug wears off, sometimes causing headaches worse than the ones for which the drug was prescribed in the first instance. Sandomigran wears off quick, check out the data sheet on the drug for more info.

If the stuff is causing headaches, especially rebound ones, paradoxically a dose increase may work. Often this is the case. Some drugs need to be taken in a split dosage so that they remain available to the bloodstream over the full 24 hour period.
You may find that your doctor recommends either a higher dose, or another 1/2 a tablet at night on top of the morning dose.
There is also usually a peroid of adjustment to any headache drug.
Some of the worst drugs I have had have been an absolute horror for the first 2 weeks until my body adjusts. I have then gained relief from these same drugs that would otherwise have been considered a failure. I would stick it out for a while, at least 14 days and see how it goes, just my personal take on it.
(Unless you experience some adverse reaction of course)
With Sandomigran, I remember visual disturbances, increased sensitivity to light, changes in pupil size and dehydration as well as Nausea, the stuff made me feel really ill and I used to throw it up often. It was not tolerated well in my system and was eventually withdrawn from use.

In the long run it is what ever works for you under your doctor's close supervision. I have not heard reports of Sandomigran achieving great results in CH prevention from anyone. It is a fairly run-of-the-mill introductory sort of drug in CH. Any good GP will start with a conservative approach like Sandomigran. If it fails there are many more options. Next step for me after Sandomigran was "Deseril" otherwise known as Methysergide. You may have better luck with this.

You may also want to try the abortive drugs and treat your headaches on a "per attack" basis. Whilst painful, one headache every 2-3 days is at the low frequency end of the spectrum for CH.
An abortive drug like Imigran may be a different approach to managing your CH, with which you may have greater success.

There are an absolute stack of other drug options, have a look at the info on the left or if you have the time, sift back through my posts, I think I have covered most CH drugs in my ever-expanding body of essays on this site...

Hope this helps.
Oh and remember, I cannot, nor would I attempt to give you sound medical advice outright.
These are just my personal experiences.
Always check with your GP.

Cheers, Ben.

Posted in Untitled on 29 May, 2011 - 8:48 pm

Isotopin/Verapamil newsflash!

In recent discussions with my specialist I heard that dosages in excess of 1000mg are now being used in CH treatment. Something to do with Verapamil not making it into the brain in sufficient levels to be effective, maybe the blood-brain barrier, not sure.
I do know that dosages of 1200mg, possibly 1300mg were mentioned during this discussion.

I know my heart nearly ground to a halt and blood pressure crashed at just 360mg SR per day during my treatment with verapamil/Isotopin.
It is tolerated very differently by every individual.

It was an "off the record" discussion between my specialist and I, but may be worth investigating if you are on a high dose that has become ineffective. Talk to your specialist about this if this is the case.

Please seek appropriate medical advice if you are thinking of adjusting dosages of Verapamil or any other drug.

Remember regular ECG testing when using or dose adjusting this drug!


Posted in lucky one on 29 May, 2011 - 5:33 pm

Please don't take this the wrong way, (the last thing I want to do is annoy site admin...) I am just trying to set the record straight here, please don't get annoyed with me Roger! But I must correct your last post so other users don't labour under this common misconception.

I too had it explained to me that blood vessels were tightening or shrinking during an attack (constricting, like a boaconstrictor does). For many years I thought this was how CH worked. I was wrong.
Given the symptoms at onset of CH, (the feeling of increased pressure) one could be forgiven for thinking that blood vessels are constricting.
I laboured under this misconception for such a long time and it did me no good.
No Doctor or Neurology specialist corrected me on it either, until more recently when I discovered my current specialist who explained this clearly and further educated me on it.

From my understanding and research, at the onset of CH attack we experience Vasodilation - expansion of arteries, blood vessels and capillaries.
Vasodilation causes swelling in some blood vessels causing them to expand up to 20 times their normal size, putting pressure onto the trigeminal and occipital nerves, causing CH pain amongst other things.

I attempted to upload a diagram of vascular states here but failed.
I did however manage to get a link to the site where the picture is stored:[/L

Scroll down a few screens and you will see a diagram of vascular states, Dilation, Normal and constricted.

The Triptans and the ergot alkaloids are vasoconstrictors. (Imigran, Ergotamine etc.) They give us pain relief by constricting these expanded (Dilated) blood vessels back to their original state, sometimes further constricting them, hence the elevated blood pressure levels detected after Imigran use.

I think it is a really important starting point for CH patients to understand Vasodilation, Vasoconstriction and the differences between these states. It plays an important part when patients seek treatment. Back when I had these mixed up, I unknowingly caused myself years of unneccesary pain by doing all the wrong things. I kept looking for home remedies and vasodilators, when what I really needed was a vasoconstrictor. It was a eureka moment when I discovered that I had them the wrong way around. The penny dropped. Needless to say, approaches to my treatment changed somewhat after this realisation.

Some research to back me up:

From wiki, the Cluster Headache article we all know well:

a relevant excerpt of that article:

Cluster headaches have been classified as vascular headaches. The intense pain is caused by the dilation of blood vessels which creates pressure on the trigeminal nerve. While this process is the immediate cause of the pain, the etiology (underlying cause or causes) is not fully understood.

Just for those seeking definitions:
Wiki reference on Vasodilation:
Wiki reference on Vasoconstriction:

A relevant, but rather complicated excerpt from the 2011 clinical handbook of Neurology that mentions how vasodilation works at onset of a CH attack:
(apologies for the complexity, this is lifted from some heavy reading)


In conclusion, there is evidence for central as well as peripheral mechanisms in CH pathophysiology. The hypothalamus is definitely shown to be involved. The nature of the hypothalamic structural change is not known, whether acquired or constitutional, whether permissive or necessary for CH development. The episodic nature of CH, in particular the timing of single attacks and periods, circadian neurendocrine disturbances and systemic effects such as altered lipolysis, is likely to be related to hypothalamic dysfunction. Recurrent activation of the trigeminovascular system with parasympathetic recruitment and vasodilation explains many of the clinical features of CH but the trigger of this activation is unknown. Possibly attacks may be initiated by hypothalamic discharge (Goadsby, 2002). The local sympathoplegia, overt or subclinical, most probably is of peripheral origin and not a cause of the pain, but once the attack begins these autonomic disturbances may contribute to the rapid escalation of pain (Drummond, 2006).

Sorry Roger, I feel bad doing this.
I am not correcting you for my own sake here.
I just can't stand the thought of others suffering under a common misconception when they don't need to, like I did for many years.
All part of the reason I now do so much research.

Cheers, Ben.

Posted in Prednisone - don't do it! on 25 May, 2011 - 2:23 pm

Heather sorry - not Helen.
I really need a break...

Posted in Gabapentin users anyone? - please help! on 25 May, 2011 - 2:14 pm

I have probably a dozen independent diagnoses for Migraine sitting in Doctor's filing cabinets and archives going back to 1979. I have had Migraines that go for a month, even when not in a CH bout. So yes, I do have Migraines. It is the subject of debate between Neuro and Pain unit as to whether it is a "Migraneous component of CH" or migraine headache outright. Either way my head still hurts...technicalities...

Basically, in between CH I have a permanent Migraine at a 2-3 out of 10.
More of an annoyance than a life-stopping condition. I find Panadeine Forte will largely knock this one out, where CH will not respond to any component of Panadeine forte whatsoever.

I always refer to this "Migraneous component" of my CH as residual head pain, usually post CH attack, but it never really goes away. It does respond to other medications like Aspirin, so no complaints there. But it pretty much means that with CH 85% of the time, interdispersed with this Migraine/residual head pain, I rarely if ever experience a "pain-free" day. In a calendar year I can count them on a lazy butcher's hand.

I meet the I.H.S diagnostic criteria for chronic Migraine, but largely ignore the things and have not sought treatment for Migraine outright, there seems little point given my CH condition and the drugs I am already taking.
I still have to get stuff done, I am very limited in what I can do, if I acknowledged every little ache and pain, I would not be able to move - ever. My CH treatments and meds are largely the same as used in Migraine anyway, so I get by with the drugs and approaches that are applied to my CH.

And a little Aspirin.

Cheers, Ben.

Posted in Prednisone - don't do it! on 25 May, 2011 - 1:52 pm

Hi Wayne and welcome back Heather! at last!

Just chiming in here to 'fess-up. Kris and I had "words" over Prednisolone.
Mainly me. I thought it was inappropriate and ignorant to swear anyone off a proven drug - point blank, as Kris appears to have done. "Don't take Prednisone"...
As you all know, despite Kris's horrifying personal experiences - Cortisone can save lives as well as ruin them. This thread is testament to that statement.
We both expressed our opinions, thoughts and feelings via PM.
I sought clarification between Cortisone use, overuse, osteoarthritis, motor vehicle accidents and their context in relation to one another. This clarification was not forthcoming.

I dislike Cortisone and its side-effect profile as much as the next person, but I have seen it stabilise CH many times and save people from a rapidly deteriorating psyche and subsequent self harm.
Unmedicated chronic pain can kill too, a statement echoed by specialists I regularly see.

At the time I communicated with Kris I was ramping up Gabapentin and withdrawing Cortisone, ramping up agomelatine and withdrawing dothiepin, popping Imigran FDT and injecting it too, all whilst getting a whole new battery of side-effects and around 5 CH attacks per 24hr. Not to mention the myriad of the prescription drug interactions I was experiencing. I was not myself, Gabapentin sent me loopy. I of all people should know when side-effects are too great and hence, when to shut up, but I didn't.
(I personally think Gabapentin should be called Blabberpentin, because I could not shut up, disinhibition was crazy for me.)

However, I will not use my condition as an excuse if I stepped over a line somewhere, we all get a bit short with acute CH. I should know when to pull my head in. StPeter will agree on this point...he too has unfortunately copped my bad attitude, we have made up and see eye to eye now. I apologised to him too.

I have looked back over my PM to Kris, whilst I extended my sincere condolences on Kris's condition and expressed my personal views on Cortisone, I could have been more tactful and diplomatic about expressing my views. I was quite angry for Kris's flagrant dismissal of a drug we all clearly need in our arsenals.

My anger was caused mainly out of concern for the newbies who might take it upon themselves to self-adjust dosages of Cortisone, if scared off the drug by such a vivid account as Kris's personal story was. I was blunt. Something I am frequently guilty of.
Whilst my opinion remains the same on Cortisone and I cannot unsay what has been said, Kris informed me of an intention not to visit the site again, on the basis that Kris "thought it was an open forum where we could express views and opinions" or words to that affect (not a direct quote). We both expressed our opinions - openly.

I have never discouraged robust debate or open discussion surrounding CH and I am not about to start now. Whilst I stand by my posts on this thread, also the content and intent of my PM to Kris, I unreservedly apologise publicly to Kris for my tone. It was uncalled for.

Now I gotta go throw some Imigran down my neck and get off here before I make a further fool of myself, or alienate anyone. It was never my intention.

Thank you Helen for coming back!
People need your compasionate responses, not my "both barrels" approach that I unfortunately dispensed on Kris.
All my drugs have failed and I need a break from this....
I am getting hammered by force 10 CH relentlessly, end of whinge.
Bring on the implant!

Cheers, Ben.

Posted in Gabapentin users anyone? - please help! on 23 May, 2011 - 9:56 pm

Thanks for the tip. I am a bit foggy on all the details right now (CH battery...),
but I reckon if I look back through my drug trial list, somewhere I think I did try this one.
One of the brandname prefixes rings a bell. Unfortunately its use is contraindicated with the other 6 or 7 drugs I am currently on. (Heart meds especially)
If I remember correctly this one had a huge side-effect burden like Topamax did, for me anyway. I will check with my specialist next time I see him just to make sure we tried it.
I am already pushing the hospital subsidy scheme pretty hard, wouldn't like my chances at this stage. I want them to pay for the implant procedure!

Thanks for the info - all of it.
Really appreciated, it has helped put my mind at ease whilst awaiting the implant.

Cheers, Ben.

Posted in Prednisone - don't do it! on 23 May, 2011 - 12:46 am

I have had to resort to a course of Cortisone perhaps half a dozen times over the years for my CH. It is not something I do lightly, or medically unsupervised. I am on it again now, due to enduring a very similar set of frequency and duration symptoms as you report.
(Long bouts with high frequency, up to 5-6 attacks per 24 hrs for 9-10 months out of the year) Cortisone has a bad side-effect profile when used in high dosages for long periods of time. However, stabilising a CH patient with Cortisone may often be the first angle of attack for GPs or specialists before further treatment plans can be devised for each individual CH patient.

Whilst I am on Cortisone I usually report slight hyperactivity, increased strength, increased aggression, slightly increased heart rate, increased apetite and weight gain. Nothing of great concern to me as yet. It can make you feel like Superman, I get a lot done when on Cortisone compared to the rest of the time when I am being thumped by CH. I take advantage of the relief I get from Cortisone whilst I am taking it.

I get complete CH remission at 50mg (high) dosage.
Tapering off within about 1 month seems to be the norm. I have had anywhere from as short as 9 days on 50mg with no taper off, right through to 6 weeks of Cortisone using a very gradual taper.
I usually start at 50mg for 4-5 days, 40mg - 4-5 days, 30 mg 4-5 days, 25mg tapering off to nothing eventually. From here on my condition and thus, tapering regime varies. I have done everything from cease use at 25mg, cold turkey. Right through to tapering off over 6 odd weeks in 1mg increments every few days. You must get Cortisone out of your system in a fairly short time frame (under 1 month or so) so that your body can restart making its own supply of this naturally occuring hormone at around a rate of 7.5mg per day. Approaches vary from doctor to doctor.

I always have my specialist draw up a Cortisone usage table for me, together with dosages, dates to drop dose and full tapering instructions. I seek medical advice and always have close supervision from doctors when I am doing this.

The most recent discussion I had with my specialist enlightened me on Cortisone use, specifically in the context of treating CH. Cortisone use in CH is not like other conditions where the drug is commonly used e.g. Asthma. CH seems only to respond to Cortisone at a dosage that works for you. 40mg may hold the attacks back, where 37.5mg will do nothing and the CH will return with a vengeance. It is like flicking a switch. Drop 1mg from your effective holding dose and bang! CH is back on. My switch flicks at about 40mg.
But 40mg is unsustainable, so I have to drop it.

Seeing as the drug can only be used in the short term without causing long term damage, I would enjoy the holiday while you can. The drug will be tapered off until ineffective or withdrawn at some point soon anyway. Hopefully your specialist or GP can take advantage of this window in your CH to get you onto another preventive drug or treatment option and stabilise your CH before the Cortisone is withdrawn. This is usually how Cortisone is used in CH. If no other preventive drugs work for you (as in my condition) then you and I are both back to the CHs, the pain and the Imigran (if you use it).

The only suggestions I can offer are not to stop use abruptly.
Rebound CH attacks from Cortisone cessation are very strong in my experience, hence the tapering. Drink plenty of water. I find it is best taken in the morning, so the hypo factor does not upset your sleep patterns. Best taken with food, or so the label says.

Please do not take my post as constituting sound medical advice in its own right.
I am not a Doctor, I cannot give specialist medical advice.
These are my personal experiences only.
Please work closely with your doctors, under strict medical supervision.

I hope you are able to take advantage of this probably brief CH remission and use the time to stabilise your CH with another drug or approach, if possible.

Good luck with it.
Cheers, Ben.

Posted in Prednisone - don't do it! on 19 May, 2011 - 1:13 am

Hi again,
Remember to always consult with your GP or specialist before deciding to self medicate or perform a dosage adjustment, especially whilst using Cortisone (Prednisone/prednisolone).
Don't go it on your own, please seek professional medical advice.

Some info for Cortisone users who may be considering withdrawing the drug:

This drug should be treated with eternal vigilance and utmost caution.
Follow your Doctor's dosage directions carefully, including those with regard to tapering off dosages.
I have just been belted with a Prednisolone withdrawal CH attack, in my experience, one of the worst types of CH rebound attack a patient can experience.

Good luck to all patients who are using this drug.

Cheers, Ben.

Posted in Prednisone - don't do it! on 18 May, 2011 - 4:42 pm

Hi to all,
Prednisolone or Cortisone is a vital frontline CH treatment.
Sometimes in the absence of other successful treatrments, it must be used as a last resort to combat cluster headache.
I agree, the long term side effects are highly undesirable. But when a few of us long-term CHers are standing on the edge of a building about to jump, often it is Cortisone that will give instant CH remission where nearly every other drug has failed. It can save lives too. It is a vital tool in managing a complex condition. I am not here to plug Cortisone or advertise it. I am not here to argue for or against the merits of its use in CH.

I would like to point out that whilst you personally find the drug objectionable, this should not deter others from following specialist advice and taking their prescribed Prednisolone when being treated for Cluster Headache.

My two cents worth...

Posted in Taking a breather! on 18 May, 2011 - 10:51 am

Aaaaarrrgghhh! Pleeeeeease come back!!!!
I am overwhelmed trying to help out so many people with my overly technical dry approach.
My technician's brain is snowed under!
The board needs some warmth and compassion back in it again that only you seem to be able to offer. I feel like a Ham. I suck at responding to a lot of people on here.

You are a highly valued and much needed member of the board here.
I feel hopeless at the idea of even trying to fill your shoes!
I really hope you get a good break, but honestly and perhaps selfishly I also hope you are eager to sink your teeth into some of the more perplexing inquiries coming through at the moment.
Enjoy the break, but you will be welcomed back with cheers and applause from this person here!


Posted in Gabapentin users anyone? - please help! on 18 May, 2011 - 10:41 am

Hi again,
Pulled the pin on Gabapentin. Fail... The side effects were dramatic.
Too many to list here. Apathy was one of them, hence the uncharacteristically short post.
CH cut straight through it anyway, to be fair 7-8 days is not long enough for accurate evaluation of the efficacy of the drug in my condition.
"Not tolerated" due to side-effects is the verdict for me.
This conludes my use of all anti-convulsant drugs. Tried 'em all now...
Back to the drawing board...

Cheers, Ben.

Posted in do you feel scared in the day... on 18 May, 2011 - 10:33 am

Hi Lauren,
Welcome to the site. Sorry to hear you have CH. I don't normally do the welcoming stuff here, the moderators like SaintPeter, Helen and Roger do a much better job of it than I. If you have been looking at recent posts and feel that things are quite academic, I apologise for my small part in that. I tend to write more complex essays on CH that may confuse people that are new to the site. When Helen (Dusker) gets back you will no doubt enjoy her compassionate approach over my technical one. Sorry about that everyone smile

CH is a complex, problematic and technical condition to manage long-term. Just the names of the drugs themselves used to treat CH can be quite difficult to get one's head around. Whilst I cannot give out medical advice outright I will repeat the same message I have posted on here many times before.

Find a CH aware GP (easier said than done, I know...) and seek referral into specialist care in a hospital. Any GP worth their salt will send you for precautionary scans in the meantime, perhaps a CT of the head, just to rule out any other possible causes of head pain. Seeking a correct CH diagnosis is important.

Upon arrival in a clinic that will offer specialist care (A Neurology clinic or Pain Unit) you will probably start the drug merry-go-round. It is good if you can get your GP to get the ball rolling with some CH drugs first, wait lists for specialist care can be rather long.
Your GP may even find a drug that works for you long before you present in front of a specialist. Here's hoping they do! Recent accounts of GP care on here have been very encouraging, CH awareness is rising, slowly but surely! We are working hard on this behind the scenes...

There are 2 basic approaches to managing CH that your GP can address:
Preventive medication and abortive medication.
There are many to choose from, too many to list here and these particular drugs would be best selected under close GP supervision, given your own personal circumstances with the littlies and all. You can be prescribed something to prevent CH from occuring and also have something up your sleeve to use on a "per-attack" basis for some pain relief (abortive medication).

I know a solid sleep routine is out of the question for you, I can see that from your posts.
Without getting overly technical on you here, a good sleep would do wonders for most of us. It is very hard for me to offer any advice other than what I have written above.

I am sure SaintPeter, Helen (Dusker) and a few other people will chime in.
Venting on here seems to help a lot of CH patients. I hope you gain some solace from the site. Good luck with it all.

Cheers, Ben.

Posted in Gabapentin users anyone? - please help! on 17 May, 2011 - 8:26 am

Hi to all,
I have tried all the other anti-convulsant drugs (Epilepsy drugs) wih limited or no success, except for some relief from Topiramate (Topamax) but the side-effect burden was intolerable and the drug was withdrawn. Just been put on Gabapentin, ramping up the dose at the moment as I taper off the Cortisone (Prednisolone). Head pain is returning. Severity and duration seem to have increased... I seem to have developed a permanent thumping Migraine - again...

Has anyone out there had any success with Gabapentin for CH?

The stuff is knocking me around pretty bad, I am trying to ascertain whether or not it is worth sticking with the drug. (Of course I will be following specialist advice very closely in this area). Any accounts, insight or personal experiences with your Gabapentin treatment would be greatly appreciated. Please, let me know if it worked for you.

Thanks, Ben.

Posted in New and hopeful on 16 May, 2011 - 9:09 pm

Firstly, my condolences on receiving the potentially life-changing news that you have CH. Don't let it get the better of you! We are all here to help if things turn for the worst.

However, I am so happy to see a swift and timely medical response to your condition.
This appears to me at least, to be a best case scenario in the emergence of a reported CH condition; being investigated promptly, getting the right scans, early diagnosis and appropriate treatment - all at GP level! All really important points that have been overlooked (sometimes for many years) in so many other CH patients. It is encouraging news for us long-termers to see diagnosis/treatment times shortening into time frames as short as this. A text-book response from the medical profession at last! YAY!!!!!!!

(The delay in my official CH diagnosis took from first presentation in 1979 until around 1997/98 when I first heard the term "Cluster" used to describe/diagnose my headache condition. To be fair, I don't think CH was widely recognised in 1979, my condition was loosely treated around available ideas on Migraine at the time)

Excellent outcome for you despite your condition, in that your story is an example to others and their GPs in what is a complex, painful condition to diagnose and manage.
It is good to see the basic investigative procedures and treatments rolled out with such speed and efficacy. Now all we have to do is make the other 99% of GPs as CH aware and proactive as yours was in this case.

As for the "one-offs" - Unfortunately, our bodies cannot read the text books, so anything from a "one-off" to years of chronic CH is possible, I don't mean to be alarmist about it. There are many complex and detailed criteria to define problematic headache conditions. Strictly, the medical term "Cluster" in this context implies a "group" or "bunching up" of multiple headache attacks. I hope for your sake that you can get away with one-offs where possible, or even better - complete and permanent remission.
It sounds like you and your GP have it well under control.

Excellent work from your GP!
Stick with this one and always follow medical advice closely! smile

Good luck and welcome to the site!
Cheers, Ben.

Posted in Restless Leg Syndrome or "Tic" syndrome? on 14 May, 2011 - 1:12 am

Thanks Barry,
Yes the shakes, tics - whatever you want to call them happen down the left side of my body only, whilst my CH is always on my right side behind the eye (apart from the exquisitely painful experience of stereo, or bilateral CH I experienced maybe half a dozen times in my life). The right brain controls the left body, so it seems logical.
I do get my head and torso thrown around the bed. I have my own bedroom away from the missus so neither of us have to put up with it. It is pretty intense at times.
Given that I experience CH about 9-10 months out of the year, having my own room seems the best option.

My Hypothalamus is hammered. I can really pick it up due to my bad sleep patterns and total lack of control over body temperature, but Agomelatin is sorting that out slowly. I also pick up differences in fine motor control down my left side when in a CH bout. I am an accomplished guitarist of 20+ years and notice any minute differences in delayed messages sent down my left arm. Getting a "good signal" down my left side is increasingly difficult these days, I find that I cannot play guitar like I used to anymore. It feels like I am trying to transmit information through to my fingers through cotton wool.

When I take Sodium Valproate, Lamotrigine, Keppra. Topiramate or any other anti-convulsant drugs, I notice a vast improvement in left side limb function and cessation of the shakes and tics.
Example: I went on Gabapentin 3 days ago, up to 900mg per day already and I am playing like a demon! Left hand dexterity and strength are at an all time high. I have noticed this before when I get put on a new anti-convulsant drug, I should record some music while I have these temporary superhuman guitar-playing powers!!!

The exploding head syndrome sounds very much like SUNCT:
A couple of links for the benefit of other readers:

I am sure you are familiar with this type of headache condition, although the bruising you describe is not included in the SUNCT criteria. I have had a few unilateral very intense short stabs, up to 10 or so per day - like ice cream headaches, but more intense, only seconds long. But it isn't really a problem that I need to address in my CH condition, its very infrequent.

I am glad I have never experienced exploding head syndrome, this bruising sounds bad, but then again, now you mention it - unmedicated Sumatriptan overuse rebound CH attacks do feel like I am being bludgeoned with a brick. I pass out and cannot touch my head for a long time after.

Hypnic Jerk is something I will have to go away and research more, I know nothing about it yet, it sounds more like a name for an unwanted drunken guest at the office Christmas do. It could exist in me, but I hardly need any more investigations, problems/diagnoses at this point.

Lets hope it goes away when I get my Nerve stimulator implant!!!

Interesting insight Barry. Thanks for the food for thought.
Much appreciated.

Did you get hold of a copy of the 2011 Handbook of clinical Neurology?
Excellent resource:
Select the "slow download" option for open access to the PDF file.
Ignore the flashing lights and sirens... advertising...
Or alternatively, try this link into the site:

Cheers, Ben.

Posted in Restless Leg Syndrome or "Tic" syndrome? on 13 May, 2011 - 12:09 am

Hi to all,
I have noticed research links here on the site proposing that prevalence of RLS is higher in CH patients. However, despite my own personal interest and beliefs around this, I have never been able to substantiate this theory outright.
Of course that does not mean that CH patients out there are precluded from RLS.
I know nothing about RLS.

I do not think I have RLS. My entire body, but mostly left side gets very jumpy before and during attacks. I have noticed a reduction and even outright cessation of these electric shock-like sensations whilst taking anti-convulsant medications (epilepsy drugs).

Topamax, Sodium Valproate, Keppra and now Gabapentin all seem to stop the shakes.
A couple of other different drugs - Cypramil and Cymbalta also reduced shakes.
None of these drugs were successful in causing my CH to go into remission.
As most CH patients do, I tend to get physically restless during CH attack, but cannot specifically say that it is limited to legs only. Whatever it is that is happening, it is beyond my control.
I am curious to hear others experiences with electric shock type sensations during CH attack. I experience right side unilateral CH and get intense left side electric shock like sensations down my left arm and leg. It has been so bad, at one point I accidentally threw a full cup of coffee across the room from the unexpected and powerful muscle spasms.
Something I constantly have to watch out for, especially when my limbs are "at rest".

Here's RLS at wiki:

Here's some of the latest study data on the link between the 2 conditions:

There is a secondary condition in CH, loosely referred to as "Cluster tic syndrome" which appears to be diagnosed as a separate condition in its own right. This seems to fit better with what I am experiencing. - A "tic".

A quote from the handbook of clinical Neurology 2011 #97:
In this syndrome attacks of cluster headache and of trigeminal neuralgia occur in the same patient. Usually the attacks occur at different times but sometimes they occur together. Treatment needs to be specific for each condition (cluster headache and trigeminal neuralgia), even when both occur together (Klimek, 1987)."

This is all I could dig up on it...

This seems much more like the sensations I am experiencing:
Tic @ wiki:

Any thoughts on this anyone?
Anyone else get these shock sensations?
Complicated area, I know...

Cheers, Ben.

Posted in Imigran MKII injector reliability issues? on 12 May, 2011 - 4:38 pm

There are comprehensive instructions included with the kit. Unfortunately, after extensive hunting I cannot locate a PDF online of the literature included in the pack. There are 2 information sheets included in there.

1. is the manual on how to self inject and is pretty basic and self explanatory. It does mention that the first dose should be administered in the presence of a doctor. Kinda hard to book a GP appointment and time it with a CH attack, I know... I went it on my own, it was the first time I had used any form of Imigran at all. I just made sure I had someone with a car and a phone close by in the unlikely event that I had some sort of reaction. Given that you already use Sumatriptan, I assume allergies and reactions to the drug itself have been ruled out in your case. My first use of the drug (Imigran) itself was by injection, so yes it was a bit nerve-wracking.

2. Is the Imigran medicine information booklet, which folds out to about the size of a the London Times. This is the most comprehensive manufacturer information available to consumers on Imigran, in all its forms and modes of delivery. It covers clinical trail results, outcomes, likely adverse reactions - everything you need to know is there.
It is not light reading, but I would encourage you to familiarise yourself with it before you need to use the drug. You will feel much better whacking that needle in the leg having the peace of mind, knowing all the information off the top of your head.
(something I wish I had done the first time...)

I am curious as to why you have not mentioned the use or prescription of Imigran tablets.
I use Imigran FDT 50mg tablets. Faster than the Nasal spray, more effective too.
Very easy to come by too. Chemists usually have them in stock for Migraine patients.
I would rather one of these than injection. They can work in as little as 15 minutes.

These tablets could be the next option after nasal spray, perhaps before resorting to expensive and often difficult to obtain injections. GPs can prescribe Imigran FDT 50mg in packs of 4 with 5 repeats under "Regulation 24" which enables you to have all repeats dispensed in one go.
Not as strong as injections, still quite strong, but sometimes you don't need a sledgehammer to crack a walnut. Injections can be a bit of overkill for some attacks.
Imigran tablets are something I would definitely be looking into if you are enduring 1 hour wait times for drug efficacy, also some validity in the use of these tablets, especially if your attacks can run for 3 hours. Your reported symptoms lean towards the more Migraneous end of the CH spectrum,(not to diminish your pain levels at all!) Your frequency, severity and duration seem to point to the idea that FDT tablets may just be tailor made for your condition.

Imigran clearance from the body is very quick and can result in rebound CH attacks in some people like me! Definitely something to investigate, so much easier to handle and cheaper than the injections.

Another concern is that you are obtaining Imigran injection through a GP/local chemist arrangement? A very expensive proposition that may ultimately put you off the idea. I get my Imigran injections through the public hospital system, through my specialist in a Pain Management Unit. I pay the flat pensioner's rate of $5.60 for up to 12 injections in one script from the hospital pharmacy. If it wasn't for this, the drug would be out of reach for me. I would investigate securing a supply through a public hospital specialist, Pain Management Unit, Neuro clinic or somehow through a hospital clinic or pharmacy.
It can be done. Be persistent, someone will give you an affordable hospital script eventually. If you are working and not on welfare, it may cost $37 or so, but better than the $130 odd price that a private chemist will charge you. Once you have the injector pack you can get refills.

I am sorry to anyone if I caused alarm about Imigran injections.
They are a vital tool in my CH management, without which I would be in immense trouble.
I was just posing the question about mechanical reliability issues with the spring mechanism in the injector pen. For the most part, the mechanism is user friendly and safe, I have great success with it. Just a few malfunctions and a couple of user errors on my part made me ask whether or not anyone else had similar experiences with the device.
The drug itself has proven safety and efficacy, no question about it for me.

Sorry Guy if I have caused you any apprehension in using the device.
It is subcutaneous, but can stick in up to 1cm sometimes hitting sensitive spots.
But all this pales in comparison to the pain of CH itself. Well worth the jab I say.

Hope this helps.

Cheers, Ben.

Posted in THIS REALLY WORKS on 10 May, 2011 - 5:55 pm

Glad to hear that Melatonin is working. I hope it's a licensed and approved Melatonin product (Jetlag medication). I see inconsistencies in the drug when supplied in a Homeopathic context. I am onto a new Melatonergic anti-depressant called Agomelatine.
It has almost Zero side-effects and makes me sleep like a baby.
It's mode of action is different to previous anti-depressant medication. It does not work like Tryptilines, SSRIs, MOAIs, tricyclics etc. It is very mild.
It has no known efficacy in CH as yet, but it's new and maybe needs some time to prove itself.
$62 for 1 month supply is a consideration.

Just posting this info again for anyone interested in exploring all optiona around Melatonin.

Nice to hear someone is getting some relief.

Cheers, Ben.

Posted in Im At the end and cant keep going on 10 May, 2011 - 5:48 pm

Get yourself in front of the RAH Pain Management unit mate.
In my experience in SA, absolutely nobody undestands CH like the folks in there.
Been through everyone else, it was a waste of my precious and limited tolerance whilst under the duress of CH pain. These professionals really know what they are doing.
I went in ther today defeated and came out with 3 new exciting treatment options.
Things are really looking up for us all, just gotta present in front of the right people.
They are out there.
Pr. Rolan is a genius! A life-saver too.

Hang in there!

Cheers, Ben.

Posted in Im At the end and cant keep going on 09 May, 2011 - 11:24 pm

I am responding here due to the desperation of your post and lack of replies from others. Just read all your posts. One frustrated individual you are indeed. I understand completely. I have had CH since birth, I know nothing else but CH. I have been in a cycle for 3 months after enjoying a very short break, just the introductory entree period for my chronic intractable condition, I expect this bout to run until some time around the end of 2011 when I will hopefully get a couple of weeks break if I am lucky. Non-stop CH since 1979 with 18 months total combined remission from CH since 1996 for me. This is normal.
I realise CH pain better than most. I also realise that CH pain is not a competitive sport.
I don't want to die either. Inner reserves of strength are required of you in such circumstances.

It appears from your posts that O2 has worked for you where it has not for me. Maybe get back onto the O2? Over 50 drug trials have failed for me so far. I see many options left for your treatment. If you can see straight enough through the pain, go back through my posts, you will find many medication options and links to treatment ideas that I have researched and included on the site for the benefit of other users.

I do not see reports of extensive investigations into your CH condition in your posts.
I note the Verapamil, Lithium, Topamax and endep etc.
Being "sick of going to medical people" is perfectly rational thinking at this point. It sounds like you have gotten the fairly standard ER to Neuro clinic treatment so far. I think Neuro departments suck personally, a huge waste of my time so far.
However, I feel that you have barely scratched the surface in relation to medical options that are available to someone in your position. I can assure you that you have not tried everything, many options are available to you through the right specialist. There is always something else to try. You are getting fed crap if Doctors say they have exhausted all possible avenues of investigation. 30 years we have been looking into my condition and I am back in front of a specialist tomorrow morning to discuss more options. I keep on pressing for solutions, what other choice do I have? There is light at the end of the tunnel and it's not an oncoming train.

For a good night's sleep I recommend a new melatonergic anti-depressant called Agomelatine. I have been taking it for over 1 month now and have not slept this well since I was a child. It's expensive - $62 per month's supply, but worth it. Looks like you could do with some abortive medications too, Imigran perhaps.
Maybe even some benzodiazipines for sleep. Temazepam, Diazepam etc.
Getting a handle on this sort of pain may require you to go onto Cortisone (prednisolone), or even be hospitalised for IV treatment with stronger drugs. Whatever works for you.
Always consult with the docs before taking any advice from forums like these.

I am unsure whether you are still a night shift worker or a night-owl. I used to be one too, until the importance of Circadian Rhythms was explained to me by my CH specialist.
Night work or activity is no longer an option for me. Regular sleep patterns and routines help underpin my CH condition to the point where I and my loved ones can cope with and understand my CH condition as best as they can. It seems to help family and friends to better deal with your CH condition if they are as educated about your CH as you are.

If the medicos around you are out of options then you need 2nd, 3rd and 4th opinions.
Persistence will pay off in this area. I went through many quacks, idiots and faced ignorance from many GPs, nursing staff and specialists before I found a world leader in CH research to help me. It took a long time and a lot of persistence, but saved my life in the long run.

Some alternative opinions and advocacy in your corner will help no end.
Please, get yourself in front of a specialist before your psychological condition further deteriorates. Your family would benefit, as would you. It may just save your life.

Blakeview SA? Get yourself referred into the Pain Management Unit at the Royal Adelaide Hospital. It takes a while but worth the wait once you get in there. We are lucky enough to have one of the world's leading CH specialists working there.
Professor of Clinical Pharmacology, Paul Rolan. Often overlooked, but definitely worth a try. Guaranteed the man has many options up his sleeve that no-one else has thought of for you. This man can save your neck as he has done many times for me.
He specialises in problematic headache and seems to understand and treat CH better than anyone else in SA.
Check him out.

A small bio: Professor Paul Rolan
Professor Rolan is the pharmacology expert on the National Medicines Policy Committee. He is a physician and clinical pharmacologist and is currently the Professor of Clinical Pharmacology at the University of Adelaide. He has 30 years of medical practice, including over 20 years at consultant level. Professor Rolan has tertiary level experience in headache and pain management and 17 years experience in the pharmaceutical industry, in both big pharma and contract research environments. Professor Rolan is currently a member of: the Investigational Drug Subcommittee of the Royal Adelaide Hospital Research Ethics Committee, Royal Adelaide Hospital Drug Committee, National Prescribing Service New Drugs Working Group, and the South Australian Therapeutics Advisory Group.

Hope this helps.

Cheers, Ben.

Posted in New Member on 09 May, 2011 - 10:19 am

Here's a link to the I.H.S (International Headache Society) home page. You may have to delve into the site a bit before you come across links between headache conditions and injury, but it's all in there somewhere:

Hope this helps.

Cheers, Ben.

Posted in Untitled on 09 May, 2011 - 10:14 am

Thanks Matt,
Very useful link going into a possible implant operation myself.
Cheers, Ben.

Posted in Taking a breather! on 07 May, 2011 - 9:01 pm

Hi to all,
Firstly apologies to Heather, this thread is perhaps not the place for me to stray off topic. However, I feel it is necessary to do so in order to attempt to quantify Squid's post.

I would like to make some separation between CH and neck problems.
It does indeed appear that Squid suffers from CH and is all too familiar with the symptoms we all endure. My condolences on your CH condition Squid, after reading your post I have no doubt that you report and are experiencing severe, chronic CH pain. Nice to see that Squid reports some relief from accupuncture. If accupuncture works for you, a good medical outcome indeed.

First of all, most of us are acutely aware that medical science cannot yet explain the mechanisms behind chronic Cluster Headache, how medication acts on it, or currently offer up any cures. It is important in light of this that we all do what works best for us as individuals and our bodies. I would say that if accupuncture works, then by all means seek treatment. If standing on your head in a cool room works, I would do it too. Relief is where you find it. Whatever works best for you.

After specialist diagnosis for CH I tried accupuncture for a few years, it helped me with some musculoskeletal issues and did offer some mild changes in my pain responses, mainly in my neck and back. It did nothing for, nor was it intended to relieve CH. The practitioner who did my accupuncture never made any claims or representations that my CH condition would or had benefited from this type of accupuncture treatment in any way.
After many treatments my doctor and I dismissed the efficacy of accupuncture in my particular CH condition, we ceased treatment soon after.

I am concerned however that a suburban Accupuncturist may now be able lay claims to cure Cluster Headache where the best and brightest minds so far have failed. In my interpretation, the I.H.S. (International Headache Society) diagnostic criteria makes a clear distinction between a Primary Headache (Cluster Headache) and secondary headache conditions caused by other contributing factors, including neck conditions.
There are many links between headache conditions and neck problems listed here within the site, not all associated with specific neck trauma (as the first link is). Have a browse, most neck conditions cannot specifically be linked as major causal factors in a Primary Headache condition such as CH.

The I.H.S. home page:

I would like to seek clarification on any report of spontaneous CH remission after accupuncture, I am sure many CH patients will agree that the medical implications of spontaneous CH remission following accupuncture would be welcome and astounding news. CH should be independently diagnosed and isolated from any secondary neck condition by a specialist, most likely by a Neurologist. I am afraid that new CH patients may complicate their treatment and possibly delay urgent specialist diagnosis in favour of less qualified and possibly dubious medical opinions such as those of an accupuncturist or alternative health therapist.

After a very long time living with CH and delving into some serious and extensive research I am aware of a small unscrupulous component of the "Complimentary" or "Alternative Medicine" industries who are willing to make a buck from anyone with CH who has some cash to part with.

I don't want to disparage the validity of Squid's claim at all, like I said, if it works then hey, go for it. Accupuncture certainly will not do as much harm as most of the drugs we all have to take for CH. I just think a clear distinction between Primary intractable cluster headache and any secondary causative factors should be ruled in or out in an appropriate specialist clinical environment. This is how Aneurism, tumours and other dangerous anatomical anomolies are precluded from a headache condition. With proper investigations and scans etc.
I would loathe to hear that someone had an aneurism after GP diagnosis of CH and had not sought an appropriate specialist opinion.

Not trying to be inflammatory here, just posing the question...
Hope it all came out right, I am a little foggy from the CH drugs tonight...

Squid! Don't take this the wrong way!

Cheers, Ben,

Posted in Taking a breather! on 03 May, 2011 - 9:46 pm

A well earned one too. Heather consistently and warmly welcomes new people to the site and points them in the right direction, with compassion as only she can do.
It's a quiet place on here without her regular posts.
I just want to point out that Heather still helps new CH patients, even when she is not suffering.
It would be easy for her to walk away and do other things, most of us do as soon as we get some respite from CH. It takes a special knid of person to go into CH remission, yet still take the time and effort to help others when they need it.
True altruism that is rare these days.

Thanks for your caring Heather. I wish you and your family well for the future.
Hope you have a good break, see you back soon.

Stay green!

Cheers, Ben.

Posted in Imigran MKII injector reliability issues? on 02 May, 2011 - 5:05 pm

Haven't tried using Imigran without the injector pen yet, but I can see how easily it could be done. I won't go into detail about how to do this here because like you, I don't want to encourage others to try this with out first consulting their doctors. I also have no experience in trying this method yet.
I have been sticking the injector pen into the side of my leg/thigh area and alternate sides depending on which side I am going to end up lying on when I eventually pass out 'post-attack'. I try to stick it in my right leg, then lay on my left side (or vise-versa) because I get a huge injection site reaction like a wasp bite, causing red lumps in my skin the size of half a golf ball, even bigger sometimes. It also depends on the condition of my leg, after a dozen or so injections there are so many reaction sites that I have to change sides just to find some fresh skin.

I always go for a bit of fatty tissue and aim for subcutaneous, but the needle goes in about 1cm so it doesn't always go in a shallow as I would like, it almost ends up intramuscular, but not by choice. As you will already know, the design of the pen dictates that it must be used at a 90 degree angle (perpendicluar) to the leg. I am usually pretty good at finding a 'dead spot' away from nerves, but only with about 80% accuracy. Veins I cannot locate in order to avoid them.

That's a small needle? Wow, I thought it looked more like a nail with a 35 degree angle on the end to assist in penetration. I suppose there are much bigger ones out there. I remember, I have seen them used to take blood. That spring mechanism is always a shock to the system, I suppose I will have to get used to the idea of self-administering without the pen. I am a needle whimp, I hate them. Diabetics go through this several times a day, so I should just bite the bullet and harden up a bit.
I just hate needles! Only slightly less than CH attacks...

It is a good idea you have, I also want to further investigate the idea of using a half of 1 injection at a time, in the stomach too. A full one comes on so strong it feels like I am cracking a walnut with a sledgehammer. Even though the headaches are really strong, the dosage does seem like overkill, I don't know I will have to try smaller doses to find out.
The less of the drug I can deliver whilst still successfully aborting an attack, the better. The rebounds would not be so strong if I could use half as much Imigran and still have it work effectively.

Thanks for the info, will consult with the professionals and get back to this thread.

I did overhear a discussion on the reliability of these devices being called into question in a clinical environment, back when I was drug trialling in a hospital ward. It made me wonder if anyone else out there had any questions, doubts or experiences with these units.

I gave up and hit the Cortisone 50mg 3 days ago, I just could not take it anymore.
4-6 attacks per 24-30 hours, as close as 2 hours apart, 3 Imigran 50mg FDT per 24 hours plus injections daily was getting a bit rough. I was about to do my Shrek impersonation and turn an ugly shade of green again. The Cortisone has knocked them out instantly, now I wait for the side-effect trade off, somewhat undesirable. No Imigran required since. But that's CH...

Thanks Matt.

Cheers, Ben.

Posted in Imigran MKII injector reliability issues? on 30 Apr, 2011 - 10:48 pm

Hi to all,

A warning, if you are squeamish about needles and bleeding, don't read this post!

I use Imigran (Sumatriptan) self administered injections (auto-injector pack).
From time to time it proves problematic to use in a few different ways.
I find they have all the bedside manner of a staple gun, but it sure beats CH...

1. I hit a nerve with the needle, this hurts somewhat, but is better than CH.
2. I accidentally hit a vein and a portion of the drug is squirted back out in blood, making the use of the injection sometimes marginally less effective.
3. The device itself malfunctions: The spring mechanisms do not fire correctly and the needle does not come close to breaking the skin. When the needle is withdrawn approximately 10 seconds later a stream of Imigran squirts across the room, resulting in NO abortion of the attack and a huge waste of an expensive drug.

I had a needle bend over at a 45 degree angle a couple of days ago, only found out when the injection didn't hurt. Withdrew the needle (which had not penetrated the skin) and watched my shot of Imigran squirt across the room again.
I observe a rate of malfunction of approximately 1 in 20 shots.
I am mechanically minded and have pulled apart the injector system many times to inspect it for potential faults. The only theory I can think of is that the rubber plunger inside the glass vial gets hit by the spring mechanism on a very slight angle, resulting in the plunger jamming inside the tube? Then the stored spring tension is only released after the needle is withdrawn from the unpenetrated skin. Any ideas or experiences?

I replace the injector pen and case on a regular basis, say every 15-20 shots, as I find the spring mechanism becomes compressed and weak over time.

Has anyone else experienced reliability issues with these devices?

Please tell of your experiences with these devices.

Sorry about the size, but here is a huge link to a picture of the injector pack:

Cheers, Ben

Posted in Hi, ive recently found out i have CH! on 24 Apr, 2011 - 1:19 pm

Sorry Caleb and Heather,
Heather's and my posts hit the site at the same time virtually, I get a time discrepancy with posts. I think the site sees us in S.A as Eastern states or some similar problem. I think we are on the same page anyway, I just didn't want to repeat what Heather had already said!

Sorry everyone...Technology.


Posted in Hi, ive recently found out i have CH! on 24 Apr, 2011 - 1:11 pm

Hi Caleb,
Welcome to the forum. Sorry to hear of your predicament.
Cluster headache that goes for up to 12 hours? Hmmmm.(thinking...)
I believe you entirely that you have a headache that goes for hours, possibly days even weeks (in other cases). This is something that should be taken very seriously.
I too have experienced this. The pain must be terrifying and intolerable in the absence of any other explanation and I sympathize with you entirely. However, 12 hours just doesn't sound right to me for CH, but there is the distinct possibility that I am wrong.
It's refreshing to see a CH aware GP have a go at diagnosis for CH, but your GP may just possibly be barking up the wrong tree. Just my opinion, unprofessional as it is. It is really important that you do not take my words to heart here. I am just throwing a few ideas around that hopefully help... Remember, always seek professional medical advice.

Here is a link to the I.H.S. (International Headache Society) web-based application which you can search within the diagnostic criteria for different headaches. Have a look around on the site, I believe you will find your type of Headache described here somewhere:

I don't doubt the severity and frequency of your headaches, the crux of the issue here I think is duration of attacks you mention - yours are long. Possibly too long for the CH criteria, but your body can't read the text books, so it could be anything really.
Only a qualified specialist can say for sure what your condition is.

Most CH fit this I.H.S criteria:

Here is the criteria for Migraine headaches, I think you will find there are some criteria that possibly better match what you described on your post:

Having put up the links, self-diagnosis or taking advice from anyone on a forum can be a dangerous pursuit indeed. If I were in your position, I would be asking my GP for some preliminary tests - X-rays, CT scans, or MRI scans and a referral to a specialist, in this case probably a Neurology clinic, they will do the scans anyway when/if you get in there. This is a routine practice for Doctors when a patient presents with serious headache symptoms reported over a long period of time. I assume it would give you peace of mind to use scans and rule out any anatomical nasties or other possible causative factors, it did for me.

Some other tips for long duration headaches that I have found helpful over the years:

Keep up the water supply, dehydration seems to be almost top of the list when it comes to headaches. Your brain is mostly water and it needs a good supply, at least 2 litres a day.

Good sleep routine - 8 hours of good sleep at the same time every night is a huge relief (if you can get any sleep). In my experience, it resets Circadian rhythm and helps your body to better avoid developing headache in the first instance.

I had to get hold of an anti-nausea medication through my GP called Maxolon so I could keep other headache medication down without throwing up, this idea may be of some help. It is important if your gut is shutting down on you that you are able to get the basics into you - food, vitamins and medication. An old I.H.S recommendation (from years ago I think..) is to get hold of some glucose tablets (Glucodin) from the supermarket and chew a couple before your gut shuts down and you get to vomiting stage. This may or may not have any validity, I am unsure.

Aspirin from the supermarket (900mg "aspro clear" SOLUBLE Aspirin) helped me immensely in managing long duration headaches like you have described. It must me soluble to work on headache. I have had FAR greater success with Aspirin than all the paracetamol, ibuprofen, voltaren "Over-the-counter" medications.

Getting off the GP/chemist merry-go-round and presenting yourself in front of a specialist will do wonders for your head - you will be believed and hopefully diagnosed and treated!
It is no fun standing toe to toe arguing the point with Pharmacists, especially when you are in acute pain. You need to be believed.

Being validated and believed by Doctors and family is really important. There is a public perception that patients will try to invent conditions or exaggerate them to obtain access to recreational drugs, some people still do this, it makes it very difficult for the rest of us.

In 30 years of CH the strongest pain killer I have ever used is Panadeine Forte and this does not touch CH anyway (as many CH patients know...), just gives me a bit of relief between attacks from the rest of my aches and pains. No Pethedine, morphine etc. for me.

I have had to resort to Imigran injections which are no fun at all. This has to be one of the most undesirable drugs ever invented, it is truly foul to use. But it works on my CH so I have to use it.

Once you have a correct/confirmed diagnosis from a specialist you will find most pharmacists quite helpful. If you have explained your condition to them, they understand it better. I have a few pharmacists that used to give me trouble, but a letter from my specialist now has them "trained up" to listen to me and help me with my condition.
No more - "It's your neck, stress" etc from them.

I now enjoy a good working relationship with my pharmacists, they ask me how I am going and go out of their way to order in special new drugs or "hard to get" drugs that help me live with CH. These days, they keep Imigran tablets on the shelf just for me.

So. just a few ideas there. Make sure you run any of them past the doctor before you try them. I can safely advise you that the water is OK! Drink away!

Good luck with it.

Cheers, Ben.

Posted in exercise as preventative on 23 Apr, 2011 - 8:49 pm


The one man alcohol/O2 trial...

Here's a turn up for the books! Back when I was trialling O2 at the Royal Adelaide I had to attempt to provide a reliable trigger for CH so we could have a go at aborting an attack with 15L per minute of 100% O2. The objective was to trigger, then successfully abort a CH attack using only O2. I spent the first day sitting in a ward drinking cheap bourbon, trying to trigger an attack - bourbon had triggered CH before so I thought it would be a reliable trigger... To no avail.

The second whole day I spent in the ward trying to trigger a CH, this time I used a can of warm beer (West End Draught - yyyuueeerrrrkkkk!) and Eureka! An attack came on hard and fast. Nobody can say for sure whether or not the alcohol was the trigger, but it had the desired effect - we got a serious CH attack on which to try O2. The O2 failed dismally, no response at all. Ended up aborting it with Aspirin about an hour later.
That was my last beer or alcoholic beverage - ever. I just can't risk setting off CH.
I am a chronic intractable case, so it's not like I get much of a break anyway.
I don't miss alcohol at all.

I have not tried O2 since. It may be worth another go at some point. It was cost prohibitive and difficult to obtain at the time.
I do virtually zero exercise. I used to ride 30+ kms every day and walk 10-15kms at least 3 or 4 times per week (Before I was old enough to drive). I still have as many attacks now in my sedentary lifestyle as I did years ago at the peak of my physical fitness.
I see no corelation between my CH and exercise. I sometimes get a post-exertion CH if I bust a gut trying to move furniture or something equally strenuous. But it is consistently inconsistent, much like the alcohol. Go figure...

If I drink alcohol I get a huge headache - I call it a hangover!!!

Cheers, Ben.

Posted in Brain Tumor on 23 Apr, 2011 - 3:30 pm

Thanks to Heather for showing her compassion, she does that best here.
I am a bit more of a research guy myself, so I will endeavour to throw some ideas around. Hopefully of some benefit to you.

I know absolutely nothing about brain tumours and their relation to CH (if any).
It is totally outside of my area of personal experience with Cluster Headache. I have not had a tumour and do not know anyone with CH who has; sorry I can’t help you there. In the absence of this knowledge and experience, I hope you don’t mind me commenting on your thread…

Your story seems to me to be a cautionary tale for others that lends further weight to the routine practice of CTs, MRIs and other investigations being carried out at the onset of CH, when a patient first reports CH-like symptoms. Unfortunately, these tests don’t seem to be carried out as often or as early as they could be. With more patient and GP education on CH, sufferers like us hope to see a gradual improvement in this area.

In your case, I am unsure of the specifics surrounding the Tumour (when it formed etc.).
(I am unsure whether scans were carried out at onset of CH and what significance this has (if any) in relation to your CH condition, so forgive me for my ignorance here…) so I will try to stick to the CH side of things.

Without handing out medical advice outright, I still strongly believe that anyone newly diagnosed with CH should go through the precautionary scans and tests to rule in/out the existence of anatomical anomalies, or other possible causative factors. This is generally routine practice; I would strongly encourage any newbies to press their GPs and specialists for X-rays, CTs and MRIs to rule out nasties like Aneurisms and tumours.

It also looks like you have done a few laps on the medication merry-go-round by now like many other CH patients have. Misdiagnosis and subsequent inappropriate treatment is something most of us have had to deal with at one point or another. Going through all the anti-depressants and sinus medications (amongst others) seems a common complaint amongst other CH patients. It can be a huge waste of a CH patient’s time and precious, limited tolerance to endure several years undiagnosed/unmedicated pain whilst wandering around between GPs looking for a straight answer, it does take a heavy toll. At least you have made it this far - to a correct CH diagnosis and have found some support in this site. The sad thing is that many do not make it this far.

I am going to throw around a few ideas for Pharmaceuticals for the benefit of anyone else who may be reading this thread – please excuse me if you have heard (or taken) them all before. I would also presume that you would have your own guidelines and precautions to observe following Neurosurgery, of which I am completely ignorant in this case. If you find any of these ideas helpful – Please consult with the necessary professional medical practitioners before trying any of them.

I see the “Triptans” have worked for you before. Sumatriptan - trading as “Imigran” is available in Australia. GPs can prescribe it in tablet, nasal spray or injectable form. The injections can be very costly, but can be arranged through the internal hospital pharmacy system at significantly reduced cost. Tablets are relatively easy to obtain through the usual GP/Pharmacy channels. There is also the Imigran nasal spray that some people have had success with. There are also the Ergot alkaloids – Ergotamine (Cafergot etc.) and DHE (DiHydroErgotamine) available as vasoconstricting CH abortives.

Methysergide (Deseril) is another preventive medication that many CH patients gain benefit from. I had 4 years "relief" with this drug.
Sandomigran (Pizotifen) is one I had some degree of success with a long time ago.
Others like Propranolol may be another option.
Indocid (Indomethacin) may also be an option, depending on your exact type of headache.
Taking Indocid helps to narrow down just exactly which type of headache condition you may have, as per I.H.S. diagnostic criteria. (find links to the I.H.S. under “Accurate consumer medical information CMI” thread)

Looking into Migraine preventives is also another option. Although intended for Migraine, many of these drugs can be prescribed “Off-label” by specialists for use in CH.
(Sumatriptan/Imigran was originally intended only for use in Migraine but now forms one of the frontline treatments in CH management. I go for what works. My body cannot read the text books!)

Quite a few CH patients that are Verapamil users report developing a form of “tolerance” or “resistance” to this drug over time. Anecdotally, efficacy in CH treatment seems to decline the longer someone takes it. I am aware of Verapamil doses escalating to over 900mg for CH treatment. These are the “Industrial quantities” that Dr. Goadsby refers to in his research. If you go down this avenue of ramping up Verapamil, always remember regular ECG monitoring! Look for Goadsby’s lecture in 8 parts on youtube; he explains correct application of Verapamil in CH treatment.
After complications with Verapamil I was prescribed a relative of Verapamil called Diltiazem, I found its side effect profile to be far more tolerable than higher doses of Verapamil.

I am currently trialling a very new Melatonergic anti-depressant called Agomelatine, early days yet (day 15-16). This drug is not intended or expected to reduce CH outright (as per Melatonin) but we are giving it a try. I am still experiencing heavy CH aborted with Imigran injections and tablets. However, Agomelatine has reset my bodyclock and I have not had this quality of sleep since I was a child. I find it of immense benefit to underpin my psychological condition by getting some quality sleep. It helps me not to fall to pieces during CH. I hope you have obtained a registered Melatonin product (jetlag medication) via prescription. I have it on good authority that the homeopathic (health food store) over-the-counter variety is a waste of time and may complicate other treatments due to side-effects, efficacy and batch variation issues (inconsistent dosages). This type of Melatonin also seems to create ambiguity with specialists in CH treatment.

It is a shame to see an employer’s reluctance to let you return to work for fear of seizures. I too faced the unrealistic proposition that I would spontaneously become epileptic once I was taking anti-convulsants (drugs usually used in the treatment of epilepsy) for CH. I found most of these anti-convulsants to be ineffective in the long term – Lamotrigine, Sodium Valproate, Keppra (Levetiracetam), Phenytoin etc. Although Topamax (Topiramate) is extremely effective in managing CH for many out there, it has a bad side-effect profile and is not well tolerated by many people. It may be worth a try, it does work well for many people suffering CH.

Most CH patients have experience with Cortisone (Prednisolone). This can buy you some time and hopefully return you to the preferred state of remission, but the side-effects and discontinuation effects can be terrible. In my experience long-term use is universally advised against by any Doctors that I have seen. I have used it in the longer term and although it was very effective I now pay the price for having heavily used/abused it. It hardly seems worth having tried it, but it saved my life at the time. - A drug to be approached with caution as a last resort – in my opinion.

I know of Atacand. I have not seen it show up in CH literature, nor have I researched it. This does not rule it out as effective at all, but I question its validity in the treatment of CH. I take a different anti-hypertensive beta-blocking drug called Atenolol (Noten). It has some proven efficacy in Migraine literature and I believe, reduces my residual head pain (Migraneous component of my CH) between CH attacks. It was prescribed to me for heart arrhythmias (irregular heartbeat) after damage caused by unmonitored (ECG) high dose Verapamil and Topiramate toxicity. I discovered its marginal benefit on my CH/Migraine by accident.

I have trialled nearly every available anti-depressant group to help manage my CH. I have a problem with SSRIs, SNRIs, TCAs, MOAIs or any other known group. Any drug that utilises a Serotonergic mode of action seems to aggravate and further complicate my CH. They have been largely ineffective in reducing the frequency, severity or duration of my CH attacks. The new Melatonergic anti-depressant (Agomelatine) seems to hold the most hope for me so far. After extensive experience with all these drug groups, I would still say that everyone’s body is different. Any of these may provide relief for you where I have found none. It is a case of trial and error with these ones I think.

I find it personally frustrating to hear of Neurologists ignoring your reports of CH following surgery. CH patients know their “beast” very well indeed – something that is reiterated all through these forums. In my experience, it seems typical of the discipline of Neurology to be dismissive of some matters relating to CH. It wasn’t until I saw a Clinical Pharmacologist who specialises in problematic headache that I managed to extricate myself from Neurology clinics. This was the turning point for me, finding someone with the necessary skill and extensive experience in managing CH.

I would encourage all CH patients to seek second, third or fourth opinions. Helpful and timely advocacy is needed when anyone is enduring this level of severity with an unmedicated pain condition. We all need someone in our corner that believes our symptoms and is in a position to treat them.

Personally, I steer well clear of irreversible invasive surgical procedures. I know that under the duress of acute CH pain most of us are willing to submit to any procedure. There is hope on the horizon. CGRP receptor antagonists are just around the corner – a preventive drug that holds the promise of CH remission without the vasoconstriction/vasodilation cycle we all endure. New blood-thinning drugs are completing trials as we speak. I am holding off nerve stimulator implants, radiology and surgeries in favour of new developments in pharmaceuticals. There are solutions coming down the pipeline – we are so close!

I wish you well in a search for relief from CH. I hope you find a pharmacological solution rather than resorting to destructive surgery. Keep up the optimism!

Now I am going to go stick another needle in my leg!('icon')

Stay well. (and you thought your posts were long!!!)

Cheers, Ben.

Posted in Untitled on 17 Apr, 2011 - 1:48 am

Hi again to all,
Just thought I would post a duplicate link under the heading of this thread.
This link gives access to a file-sharing site where you can download the latest most accurate and comprehensive data on Headache disorders.
The document is approx 800 pages comprehensively covering all things Headache - The 2011 Neurology Handbook (Headaches #97). I do a lot of sifting through research and this document is a gold mine. The best I have seen so far. Get it while you still can!
Link into the site and press the blue "Download now" button to obtain a copy of the PDF document.

Enjoy the reading...

Cheers, Ben.

Posted in Untitled on 16 Apr, 2011 - 9:58 am

Hi to all,
Just located the I.H.S. (International Headahe society) web based application for diagnostic criteria of Headache disorders. It is easier to use than the lengthy print (pdf) versions I have previously posted. Users can find their own condition in seconds.
CH is a primary headache, you will find information on CH under this sub-heading.

Good luck.

Cheers, Ben.

Posted in Chronic?? on 16 Apr, 2011 - 9:48 am

I was doing a bit more research and I came across an I.H.S. web based application.
It is easier to use than the print version and you can search the site for your particular headache. This has got to be easier than sifting through masses of complex text with a sore head...

Cheers, Ben.

Posted in Chronic?? on 15 Apr, 2011 - 7:57 pm


Page 15 and 16 of the first link here list the diagnostic criteria as defined by the International Headache Society (I.H.S). This is the same diagnostic criteria used by specialists to ascertain just which type of headache you have, the degree of severity and duration.

"Chronic" implies a specified period of duration of attacks without remission.
This document does not tell you what the chances are for you of becoming chronic, but it may help you to put your condition within a set of guidelines. It will certainly tell you if you meet already meet the criteria for "chronic" CH.

This is the "Pocket version" and is shortened from the entire criteria, a much longer document.

Here is the full version:

Good luck with it mate.

Cheers, Ben.

Posted in Untitled on 15 Apr, 2011 - 8:12 am

Hi again to all,
Just reporting back on Agomelatine. I am still having CH attacks, aborting them with Aspirin, Imigran FDT and injections. Not much fun at the moment...
Agomelatine was never intended or expected to relieve CH at all and by day 8 it hasn't.

However, this stuff seems to have amazing sleep benefits for me with almost zero side-effects.
I take Agomelatine at about 8.30 pm, by 10.30pm I am ready for bed. I get 8 hours of solid sleep with virtually no interruption or disturbances. Drugs that "knock you out" or induce sleep usually leave you feeling drowsy during the day, but I wake up clear and ready to go for the day. (apart from the CH attacks still limiting my movements...)

My sleep was out of control. I am trying to underpin my CH condition with a good routine, starting with solid sleep patterns, it has to help. It sure beats the sleep I was getting. I have not been woken by a night CH attack since I started the drug. My hope is that a solid routine starting with the ability to get some sleep may actually calm my brain down and may help me claw back a small benefit in CH management. Its only speculation, but I am on 1-2 attacks per day when I would usually have been up to 3 or 4 a day by now.

I will see how it goes. Sure is expensive, $62 a month now, doubling my dose is a $62 per fortnight proposition, which may prove too much for someone on a Disability Pension.

Highly recommended for anyone who needs to push the reset button on their bodyclock.
I have never slept better.

Cheers, Ben.

Posted in Untitled on 10 Apr, 2011 - 5:07 pm

Hi to all,
Just throwing some ideas around on this one...

This shows that hereditary genetic links in CH are possible, but improbable.
My research indicates that the incidence of hereditary CH is statisticaly only slightly higher than the normal prevalence of CH in the general population.
I can find much supporting documentation for and against theories on the possible incidence of hereditary CH. There seems to be as much information on the topic that is in the affirmative as the negative. I would encourage people to do their own research on this topic.

Quality of data is relevant at this point.
The most recent and accurate research should be consulted when investigating CH and its treatment. Things are moving quickly in research.

Some hereditary CH links are being investigated. Others are being confused with a confirmed hereditary genetic link associated with Migraine. For those of us lucky enough to have Migraines as well or a Migraneous component to our CH, we can all endlessly speculate as to which Great Aunt used to "Have a turn" or "Got those head pains..." I am sure we will never really know for sure in our lifetimes.

A hypothetical question to all out there:

If you could take a diagnostic test that would positively indicate that you or your child had inherited CH, what would you do with that information?

I am not trying to inflame anyone's opinion or ignite a debate on genetic testing here.
(Please don't!!!)
I am honestly at a loss as to what anyone would do with this information.
To know if your CH was hereditary or not seems useless to me?
There is no cure for CH, so it seems irrelevant to me, if you get CH, you are stuck with it.
However, if I had kids I would not want them to suffer it either like I have. (I have had CH since birth) But I would not let the potential risk of CH exclude me from the possibility of ever becoming a Father either...
But I am an ignorant 35yo single male with no kids. I have kind of a narrow logical view of these sorts of issues. There must be something I am missing here...It's a curly question to me - quite perplexing...

Apologies to Jo, I did not mean to hijack your thread!
I hope they eventually rule out CH as hereditary, it would be good news.

Cheers, Ben.

Posted in Untitled on 07 Apr, 2011 - 11:37 am

Hi to all,
I want to open up a thread for people to discuss any new medication discoveries they might have come across in the course of their recent CH treatment.
While a few of us await CGRP receptor antagonists or any other new developments in CH research, some of us are still experimenting with other options...
I am very interested to hear individual accounts of trials with uncommon, previously unused or outright new medications.

I have good news for those looking into issues surrounding the Hypothalamus, circadian rhytyhm and Melatonin.

Some news I received through my pain unit specialist: There is a licensed Melatonin product in Australia, a slow release product designed for insomnia management. It is a 2mg dose and a packet of 21 costs $33 on private prescription. The right dose of Melatonin for CH is not clear, but CH trials have used up to 10mg per day, which is quite a large dose.

(This is not the Homeopathic "Health food shop" type - which has no medical merit whatsoever) This is an expensive proposition for CH patients out there, but if we try it and it is effective, the Government may see fit to make it cheaper and easier to access.

There is also a licensed antidepressant that has only recently come onto the market called Agomelatine. It combines an action copying that of Melatonin with another Seratonin related mechanism. My specialist reports having read comments in CH literature suggesting that this drug is suitable for evaluation in Cluster Headache, however no trials have reported or are currently in progress.

As usual, the lowdown on the drug:

I have been prescribed Agomelatine and will hopefully start my first dosage today.
It costs $62 through a GP/Pharmacist for a 1 month supply.
If it helps, I may be given easier or cheaper access to the drug through the Hospital system. I am in the middle of a mild bout of CH - 1 or 2 attacks per day aborted with Imigran FDT or injection, so I should be able to give a fairly constructive account of the efficacy of Agomelatine over my own CH, if it works...

I believe the theory behind its selection in my case, is the drug's mode of action.
I have big trouble with SSRI, SNRI and MOAI antidepressant drugs. The TCA ones just don't work anymore, so we had to look elsewhere, especially after my recent bad experience with Cymbalta. I have a loop cycle problem of rebound attacks/medications that involves the use of medicines that regulate Serotonin, so we are looking for a different mode of action. Hopefully this will calm down my brain and get me some sleep and respite from CH.

There is also news of a new trial result having been published. There is a new blood-thinning drug that may help CH patients.

Cheers, Ben.

Posted in Untitled on 07 Apr, 2011 - 10:47 am

Yet another Australian Government based resource for researching CH and medications:

Posted in thought they where gone on 30 Mar, 2011 - 3:12 am


CH cannot win. The only thing that can kill you is you.
You will prevail over CH. You have no choice but to outlast the things.
You are stronger than CH, you have done it before - you can do it again.
1000 times blind.

Give this Verapamil 2-3 weeks to kick in (from memory...) and you may get a break - could be as soon as tomorrow. Who knows with verapamil? Could be anywhere between 3 hours, 3 days, 3 weeks, 3 months, or never, for it to kick in and start working for you.

There is a possible break in the weather soon as well. The seasons are shifting again and with them my CH evolves still... Maybe yours will too...

But one morning soon I think you will wake up well rested and fresh. It will be worth the wait and suffering.
In my experience, relief of CH from Verapamil use was very slow for me, it took several weeks. Then my CH symptoms changed, I still had the attacks, but with reduced head pain.
Until I had to cease use of the drug.

Good luck with it.

Drink heaps of water!!!!!

Cheers, Ben.

Posted in Untitled on 29 Mar, 2011 - 6:20 pm

Hi Everyone,

I hope everyone got that last one about imigran having NO recreational value.
I find that the general population reacts to the idea of a self-administered injection (imigran) being closely associated with the processes involved in illicit drug abuse and the subsequent recreational "Buzz" for the user.
Either this or they think you have an epipen, diabetes or peanut allergy...

To my knowledge Imigran is not a drug of abuse or dependency.
Personally. I think science would be hard pressed to invent a more vile and undesirable drug, if it were not for its abortive effects.

I know its "Euphoric" pain relief has been sought out by patients. There was an indication in the literature that patients had gone out of their way to procure the drug and had a psychological pre occuption with supply or withdrawal of the drug. But only by CH patients, not the general population seeking a "hit". I know I get worried when the supply runs out, I have been assured I am somewhat "Normal"... if CH is gonna hit? I would be worried too...

Some doctors associate "Pain relief" from "Headaches" as an excuse on the part of the patient to obtain barbituates, opiods, benzodiazipines and other known recreational drugs. I think you will find that at some point in there lives most CH patients wil have been asked by nursing staff/doctors if they were "inappropriately seeking known drugs of addiction or dependence". Or basically, whether or not they were some kind of junky out looking for a hit in the nearest ER...

So, I say, get yourself some Imigran by whatever legitimate means necessary.
It only works for us CH folks, no one else.
I should warn any new Imigran user against Nausea - I was presribed Maxalon for the Nausea caused by the Imigran. Imigran in either injection or FDT tablet form gives me strong Nausea.

Imigran is so vile I would not wish it on anyone. Some days I don't know which is worse.
Sometimes I just have the headache instead. No "Buzz" in that for me!

Cheers, Ben.

Posted in verapamil?? on 29 Mar, 2011 - 5:44 pm

I don't want to speak for anyone else on the site, but there is a considerable amount of conversation on Verapamil already on the site, we run the risk of repeating ourselves. You can find threads on "Verapamil" or "Isotopin" in the medications and treatment areas on this site. My account of my own trials with Verapamil can be found in my posts somewhere.
There are also many other threads that touch on Verapamil.

To save time for the people following this thread I will post the usual links to all recent accurate sources of information on the drug, so all can research, educate themselves and form their own opinion on the drug.

The recurring discussion always seems to returm to side-effects versus efficacy and the requirement for ECGs. All I can suggest is to communicate openly with the docs and specialisits about your BP and heart and keep an eye on your heart, have regular ECGs. This is all through the CH/Verapamil medical literature.

Here is a pile of information the drug:

The wiki overview link:

Isotopin SR Datasheet:[/L

Isotopin: Consumer Medcine information (Chemist Printout):

Covera HS Datasheet:

A link to a very comprehensive document that I recently came across.
"The Handbook of Clinical Neurology #97 - 2011".
800 pages of exquisite detail including everything we know about CH.
Worth downloading, definitely worth a read or reference material for any CH sufferer.
To get it you will have to link into this filesharing site, click the blue download button with the arrow facing down.
Wait for the clock to time out about 30 seconds (If applicable), then download the file.
It contains all we know about CH and Verapamil in great detail.

More interesting stuff on Verapamil...(and the need for ECGs)
Goadsby Lecture (part 4 of 8 from youtube), Verapamil:

I know that is a lot of reading and some of it repeats itself. But I think patient education is vital in dealing with the introduction of drugs to a new patient. The docs do their best, but they will not send you home armed with this lot here!

Cheers, Ben.

Posted in Untitled on 24 Mar, 2011 - 11:43 am

CH and Rationality...

Some of you will know from reading my posts that I can be very blunt.
Such is the existence of the long term CH patient...
I do not physically have the time to beat around the bush - too many CH attacks/not enough time... So, in the context of all my posts so far, I will call this one how I see it.
I am a living example of mood swings and major shifts in thinking, thanks to CH (and the 50 odd drug trials). I do not make excuses for my behaviour whilst experiencing CH, I have it pretty bad now, and my rationale is again departing. After 30 years of this, I am over it. What choice do I have?

Onto our newbie DDAY2 - I hope I can be of some help.
Please check out my posts for links to documentation (if you can see straight for long enough, sorry mate.)

It disturbs me seeing an individual so near the end of their rope with only ER as a source of primary medical care. Some serious medical intervention is needed.
The right piece of paper with the right things written on it needs to hit the right desk somewhere in our Health System. Pronto.
No one will be questioning anyone's pain with proper diagnoses under your arm.

I will repeat my past posts here when I say: ER staff are not trained to deal with CH. They are trained for immediate life-threatening acute trauma. ER staff do not deal well with CH. In their particular work environment, if you do not constitute a medical emergency, or a threat to your own or someone else's life - you will be parked in a hallway for half a day and sent home with a couple of Aspirin.
"Experience" with CH whilst in ER may constitute a 15 minute blast of Oxygen through the wrong mask, if you are lucky.

No one ever died from a "Headache" they tell me in ER. But my pain management specialist insists that unmedicated chronic, acute pain can be a life threatening disease in itself and should be treated as such. ER will give you a good solid wall to bash your head against if nothing else. Maybe some security guards sitting on top of you after you try to reiterate the validity of your claims to be in severe pain. I found ER a good place for my faculties to have departed entirely, which was counter productive for all concerned in the long run.

Short version: forget ER. Get some pieces of paper moving.
ER will only become useful when you are provided with at least 15 minutes of 1 on 1 discussion with a specialist. In this case, I would assume a Neurologist.
2 ways to present before a Neurologist:

1. The ER wait and unlikely occurrence that a Neuro will see you on short notice, then refer you into the hospital system as an outpatient.
2. GP referral. If you already know what CH is and have a diagnosis, get referred into hospital by a GP.

Keep hammering down doors of GPs until you find a "CH aware" GP. A rare occurrence I know. In the short term seek referral to a specialist and see what a GP can prescribe for you. There are many Pharmaceutical options available through a GP and a local Pharmacist. Imigran, Verapamil etc. etc. (See medications and treatments)

See what some other users on here have to offer. I don't have many answers.

If DDAY2 is as pissed off as he seems I would steer clear of Prednisolone.
It is a steroid and can make aggressive people worse (me...)

Deterioration of psychological state...

When I deal with my specialist we talk about many things relating to CH. But we always come back to 2 main states of mind at play in CH. - ON or OFF.

1. ON - A patient in the midst of the worst series of CH attacks (seemingly ever...) is almost always willing to try anything. Rationality has departed, left the building. Logical thought has disintegrated. Desperation rules thought processes and decision making.

I can't speak for everyone out there, but I will bet nearly every chronic and severe CH patient has considered drastic options from destructive surgeries to banging their heads against rocks, whilst in the grip of CH. This is probably the worst time in life to make major decisions about irreversible and destructive brain surgeries.
Clarity of thought and good judgement is necessary at some points in life - considering experimental brain surgery is one of those occasions.

2. OFF - A patient returns to CH remission for a period of a few months or more. Their psychological stability will return and their willingness to undergo destructive surgery will proportionally decline. After all, who would be inclined to undergo such serious surgery when feeling well?

Some will go ahead and have procedures carried out at this point. Most will steer clear of an opportunity for surgery at this point, because they are feeling well and get on with their lives.
No CH sufferer can forget the intensity of pain, but when in remission, steering clear of surgery suddenly seems quite "normal" rational behaviour...

Swinging between these two states of mind has been a very long and harrowing process for me. When the CH attacks really hit, my psychological state rapidly deteriorates. There is nothing on Earth I would not do to relieve a force 10 CH attack. When capable of actually having a thought - I have many thoughts on what I could do to relieve the pain, some involving power tools or boulders...
This is not what I would call a "sound" or very "rational" period in my thought processes.
This is the time to put myself in cotton wool and someone else in the driver's seat.
Definitely not the appropriate time for serious consideration of life-altering experimental brain surgery.

If I get 2 months relief, I am usually seeing my specialist, kind of exploiting a "window" in my CH where robust and rational thought has temporarily returned. It is important for my "CH free brain" to look at treatment options without being under the duress and impaired judgement of chronic, severe pain. We look at all the nerve blocks, stimulators, implants, radiology and surgery options - and you know what? I would not go through with any of them. Seemingly 5 minutes after my last CH, I immediately dismiss surgery as an option.
At the same time, I am quaking in fear of the next round of CH... Go figure???

And so it goes, the paradoxical swinging back and forth between intense CH coupled with the desire to do ANYTHING to rectify it. Then back to a state of CH remission, poring over clinical trial results, surgical procedure outcomes etc. reluctantly looking for a viable way out.

It takes a very long time to have reached this point. To even consider surgery, I would need to have done the right thing by my family, friends, doctors and myself and have tried everything, explored all options. Self education is important. Racing into surgery without exploring all medical and pharmaceutical options does happen. I would urge any CH patient to seek more medical opinions, do more research and equip themselves with the actual hard evidence (trial results) that surgery for CH may work for them.

My point is: Make sure you have your head firmly screwed on before you let someone else have a go at screwing it off...

I recently read one case history of a persistent woman in her 30s who had endured diagnosed CH for less than 2 years. She had tried Topamax for a period of months and it had failed. At this point, the boffins in Neurology saw fit to "Glove and Gown", do the scrub down and wheel her in for surgery severing nerves in the brain. The operation was unsuccessful, as many are. She was left with significant deficit in quality of life and no reduction in CH pain. (I will see if I can locate the case study)

I am not here to debate the merit or efficacy of surgery, or any other options that I have not yet tried. Nor call her individual circumstances into question. Merely to point out that you can have your brain operated on after as little as 2 years with CH after only having tried 1 or 2 medications.
That is what I call lack of patient education. I think she had a right to know all other treatment options before she was deemed "Intractable" and summarily botched.
Patients deserve better than this. She had the right to make an informed decision.

I wouldn't want to see this repeat on our friend "DDAY2" here, simply for lack of explored options...

This would have been done to me by now if I had let them. I was ready to roll on nerve surgery, assessed, all ready to go. I went into remission, and then declined the surgery. Then months later a specialist asked me an innocent enough question: "Does your Headache ever change sides of the head?" I thought back and - yes. I have had about 3 or 4 CH attacks that were bilateral.
Straight away I was ruled out as a candidate for nerve severance. Due to the possibility that the pain would shift to the other side of the head. (A common problem)
One simple question asked months after the date of my proposed nerve op. The outcomes could have been so different for me if I had been hasty and pushed harder for surgery...

So, DDAY2, I would suggest getting yourself in front of as many doctors as possible - you will find help. In the meantime, freaking out is not going to help. In my 30 year experience "Freaking out" neither induced nor aborted an attack. It has on occasion induced the attention of the security agencies that frequent ER clinics. It tends to "Freak out" the nursing staff, which can in turn, make your stay much "Less pleasurable" if you want to play with them...

I found headache diaries counter productive. They are very necessary for initial specialist investigation and you will need one. But after many years of "Counting the days" it can only help to reiterate how bad your suffering is. Counting never solved anything for me, just pointed out the depth of the hole I was in at the time.
It starts to feel like marking off the days in Alcatraz. Especially as I have had a total 18 months of combined remission since 1996.
There is no end in sight.

I have been discouraged from writing a CH diary these days, it is a waste of my very limited "CH free" time. So long as I can give an accurate account of the last few weeks, specialists have all the information they need to treat my current circumstances. The older info gradually becomes irrelevant for treatment purposes.

This is not a Federal court case, even though it can feel like one if nobody believes you, or keeps questioning you. It is important to be listened to, believed and treated. I know a lot of nursing staff, doctors and specialists can be dismissive, but you have nothing to prove. You know you have CH, let them prove otherwise. Make them state that you are "well", rather than you having to feel like you need to "Prove" that you are unwell. This usually gets some attention and some people into gear when a report like that is requested of them.

It has taken me a very long time, a LOT of practice and eternal vigilance to separate my psychological condition or state (Freaking out) from my actual primary medical condition (CH Head pain). Now I can calmly walk into a hospital and reason with an unreasonable system, whilst I have CH. I am courteous, polite and calm at all times. Things move a lot quicker for everyone when I behave like this. I have become very patient. If I get into a disagreement with nursing staff (Example: they take my Imigran injectors off me) I just outlast the bastards. I stay through the next shift change and the next and so on. Some drunken idiot will come in and keep nursing staff occupied with injuries anyway, then maybe a Neurologist will fall over you in the hallway - stranger things have happened...
"Patient" becomes a mode of instruction rather than a label at this point.
ER can be a way in, but a tedious exercise in alienation and self doubt is more probable, in my opinion.
Waiting is now one of my professional occupations...

I used to be this pissed off too DDAY2. Possibly more. Many heads have rolled.
You know what? I had to suffer not only the all encompassing pain of CH for 30 years, but a good 20 years of being pissed off about it was my second undiagnosed condition.
I am 35 now - that's a lot of being pissed off.

CH is no one's fault. There is no one individual or thing you can blame it on.
You really have 2 choices: a hard life with CH or an even harder one being pissed off with CH all the time.

I know you may not agree with my approach (or lack thereof). I am here to help.
PM me anytime if you want to talk off the forums.
It is hard to know exactly where you are in the CH journey without direct discussion.

Please, take it easy and hang in there.
My CH has not allowed me to train, have a house, job, car, wife, kids, medical insurance or any other trappings of the working person. In my case, it is a full-time lifelong disability.
I am no longer pissed off with it.

Things could be worse.

Cheers, Ben.

Posted in Untitled on 17 Mar, 2011 - 10:53 pm

I used Deseril for 4 years non-stop. 2 tablets every 8 hours, totalling 6 per day.
Been there – done that – ain’t doin it again…
The trouble I found with such a strong and relatively fast acting vasoconstrictor like Deseril, is the “Rubber-band” type rebound effect. This is the point (I have personally found) where any medication that is fast and strong enough to constrict blood vessels so effectively, also seems to have a time where the drug’s blood concentration levels plummet (about 8 hours after dosage is taken) and I experienced rebound attacks that were far greater in number and severity than the original CH would have been, had I avoided Deseril altogether.

I used to get massive rebound attacks almost exactly 8 hours after each dose. I could set my watch to the things. These were so bad that I started taking 2 Deseril, then setting an alarm for 7 hours time, at which point I would take 2 more. This way I avoided the 8 hour rebound attack – but jeopardised my organs somewhat. 4 years of my life that I do not want to repeat.

From memory - Deseril should only be prescribed for about 3 months on and 3 months off, maximum. If you don’t get a break from the stuff, you can end up with all sorts of horrid complications – starting with high liver counts and other pathology indicators venturing out of medically acceptable parameters.

Raising your dosage up to 6 per day may help, if you are in a position to do this, but I would recommend staying away from doing that. Higher dose always equalled greater rebound for me…
Just my opinion and experience.

In relation to Zomig. My specialist helped invent the stuff (a leading Professor of clinical Pharmacology) and he will prescribe Imigran over his own “zomig” any day of the week. In fact he does so regularly.
Availability and understanding of Imigran amongst Pharmacists and Doctors seems to be more widespread than the other Triptans.
My specialist and I have been over much data from the Imigran trials – the short version is;
Why would a drug company sell 3 different delivery methods of the same drug with out clinical proof of a difference in outcomes?

(No cynics! There is no money in it! There are not enough of us (CH Patients) to warrant research and development funding to find CH drugs alone. We are too rare to study regularly. The drugs are usually targeted at Migraine sufferers and we pick up the scraps – Imigran itself was solely designed as a Migraine drug – it was trialled on CH fully unexpected to work, but it did – so we CH patients ended up with Imigran almost by mistake…)

There are many different strengths and ways to get it into you. -
See Pharmacology section of this datasheet for Imigran.
I think you will find that Imigran efficacy varies dramatically depending on dosage and mode of delivery.
In my personal experience Injections take 5-20 minutes to fully abort an attack.
Imigran 50mg FDT tablets take anywhere from 25-45 mins to start to work, if they will at all.
Imigran Nasal spray, I found to be ineffective, absorbtion was minimal and took over 1 hour.

An Excerpt from the PDF:

Following subcutaneous injection, sumatriptan has a high mean bioavailability (96%) with peak serum concentrations occurring in 25 minutes. Average peak serum concentration after a 6 mg subcutaneous dose is 72 ng/mL. The elimination phase halflife is approximately 2 hours.

After oral administration, sumatriptan is rapidly absorbed,
70% of maximum concentration occurring at 45 minutes. After a 100 mg dose the mean maximum plasma concentration is 54 ng/mL. Mean absolute oral bioavailability is 14% partly due to pre-systemic metabolism and partly due to incomplete absorption. Oral
absorption of sumatriptan is not significantly affected by food.

Imigran FDT tablets and Imigran tablets have been established to be bioequivalent in the fasted state. In the fasted state, sumatriptan tmax was, on average, 10-15 minutes earlier for Imigran FDT relative to Imigran tablets. Imigran FDT after a high fat meal resulted in an average 12% increase in AUC(0-∝) and 15% increase in Cmax relative to Imigran FDT in the fasted state. AUC(0-2) was estimated to be an average of only 5% lower and tmax delayed by only 6.5 minutes for Imigran FDT in the fed, relative to the fasted state.
These variations are not considered to be of clinical significance.

After intranasal administration, sumatriptan is rapidly absorbed, maximum plasma concentration occurring in 1-1.5 hours. After a 20 mg dose, the mean maximum concentration is 12.9 ng/mL. Mean intranasal bioavailability, relative to subcutaneous administration is 15.8%, partly due to pre-systemic metabolism. Plasma protein binding is low (14-21%), mean volume of distribution is 170 litres. Mean total plasma clearance is approximately 1160 mL/min and the mean renal plasma clearance is approximately 260 mL/min.
A pharmacokinetic study in adolescent subjects (12-17 years) indicated that the mean maximum plasma concentration was 13.9 ng/ml and mean elimination half-life was approximately 2 hours following a 20 mg intranasal dose.

End excerpt.

As far as knowing when to take triptans – when I drop to my knees in under 30 seconds, I know its injection time. Anything less severe and I am straight onto an Imigran FDT 50mg tablet – then the race is on, CH attack vs onset of drug. Usually, in the first 20 mins the headache will win out initially, but around the 40 minute mark I can feel that Imigran flowing through my system and the attack goes away.

It is up to the individual what works best for them. With a bit of practice and a full armoury of Triptans to choose from – you will know almost intuitively what to take, how much and when.

As for a Doctor’s reluctance to prescribe Imigran. Personally, I think ignorance was at play here. I have had maybe half a dozen doctors prescribe Imigran for me, every single doctor was doing this for the first time ever – they are apprehensive of bad outcomes.. They may only come across and treat 1 or 2 CH sufferers in their whole career. They are apprehensive about writing a script for a condition and a medication that they are unfamiliar or inexperienced with. This is unfamiliar territory for most GPs.

Some Doctors also mistakenly think that Imigran is a drug of abuse or addiction and has some recreational value! Laugh it up Imigran users! Taking Imigran is about as much fun as drowning. Sometimes I prefer CH to it.

My specialist said to me of Imigran “no-one can accuse you of getting ANY recreational benefit out of Imigran whatsoever” this coming from a professor of clinical Pharmacology, who presides on ethics boards and researches clinical opiod usage, dependence/withdrawal issues…

So, if you want Imigran, you might have to press a doctor a bit harder. They need to realise that unmedicated or untreated pain is a disability in itself. Then maybe they can start handing over what it is that you need. Speak to your specialist some more.
Specialists can throw Imigran around if neccesary.

Some advocacy from a medical specialist is needed here. Remember, I am not a Doctor, seek appropriate advice about everything I have mentioned and how it applies to your individual condition.

Good luck with it.

Cheers, Ben.

Posted in Untitled on 14 Mar, 2011 - 11:25 am

No worries Peter.

The ONLY advantage of losing my ability to work because of CH, is that I have time on my hands that others do not. So between attacks I can research for longer periods of time and sift through all the repetitious, duplicitous garbage in order to find the good stuff. I then try to get as many people onto the good research as I can, education always helps. Feedback from others tells me this is a useful tool. Someone on here said - "an educated CH patient is a good patient"? Or similar words to that effect.
Maybe it was my specialist, I don’t know…

I wish I was gainfully employed, but my CH got so bad I have not been able to work since 2004. Sympathy or "room to move" from employers just became too much to ask in the end. I had some very understanding employers, really good compassionate people. But at the end of the day they are there to make money not friends. They did not want to have people curled up under desks in conditions that pose a danger to themselves or others. Walking around a high-end electronics manufacturing facility post CH is good for no one.

I was working as a satellite microwave communications technician. I was good at what I did - a specialist in my field, with pride in my work. I worked on very expensive, intricate, microscopic high-end electronics. Some individual components I had to solder in were (FET) transistors made of gold, worth over $6000 each. Very small, sensitive and expensive. The margin for error was non-existent. I was soldering these things into units worth (US) a quarter of a million dollars each, all day during the 2003 Iraq war. So stuff-ups were not permitted, or people may have gotten killed as a result.

Can you imagine the pressure to get that right with tolerances down to the hundredth of a millimetre under blurry 50 times magnification, just after a cluster attack? It became virtually impossible due to the frequency of my CH. I hid my condition well and got away with it for a couple of years. Thanks only to 2 Methysergide (Deseril) swallowed on the way in the door at work and 12 Capadex a day whilst there. But I was guaranteed a force 10 attack exactly 8 hours later when the Deseril wore off. If I was ever asked to do overtime, it was a disaster...
Every day after work I collapsed into bed with a major rebound attack, by the time I had recovered it was time to go to work again. This was unsustainable.

6 Deseril a day for 4 years non stop ground my body to a halt. Liver tests were getting real bad, as Deseril is supposed to be used only episodically - 3 months on, 3 months off. Understanding of my condition was evaporating with my employer(s). I only managed to pull about 6 x 38 hour weeks in the last 18 months. Statistically not very reliable at all. I am surprised my work put up with me as long as they did.
They were as good about it as anyone could have expected them to be. But in the end, I conceded defeat and reluctantly gave up the best job I ever had in Feb 2004.
And with it, any future hopes for financial independence, freedom and security, like ever owning a house or a reasonable car etc.

It took 3 and a half years of not wanting to be pensioned off, before I finally won the battle to have my Cluster Headache recognised as a Disability in its own right. Then I was finally pensioned off in late 2007.
After 50 odd drug trials, I got sick of CH all the time. Talking about it, hearing about it, thinking about it, experiencing it, living with the threat of it - everything to do with it.
I wanted to crawl away and die.

But when I found this site and read some of the stories on here, I was horrified at what people were enduring in their own lives, mainly due to one thing - ignorance. I began to realise that my collective experiences were of some merit to other people. This is when I decided (with encouragement from my specialist) to crawl out of my darkened room and make the effort to try and help others on this site.

I don't know any more about CH than anyone else on here. But I do know how to navigate the ever changing and highly political rocky waters of the Australian health and welfare systems. I am here to help someone get access to the drug they never knew existed. Access to treatments they were told are unavailable. Access to specialist care they have been denied. Access to disability services and a safety net income through welfare agencies.
Advocacy is what I am about.

I have a stack of paperwork 3 feet high that documents my personal journey and disintegration from gainful employment, navigating through many welfare and disability agencies, through medical and personal assistance schemes, rehabilitation schemes, all the way to getting CH formally recognised as a form of disability. I don't know why I kept it, it is a sad indictment of Australia's health/welfare system and my battles with it. But the experience gained from this documented journey has to be worth something to someone else out there.
Being alone with CH sucks, I did that for 20 years. I feel compelled to help those who are suffering alone in their little flats, banging their heads against the wall, either figuratively or literally. Losing their jobs, trying to have others around them believe what they say and help them.

If I was well enough I would be an advocate for CH. I would consult with other patients and write on the subject. Do things like have "Cluster awareness week" show up on TV and in the media. Just thrash the CH story over and over publicly, until the average person in the street may have some understanding of what it is that we live through every day. I would push it as hard as other diseases are pushed in the media. But this is a pipe dream for me. If I was well enough to advocate CH, I would be employed once again.

I think a lot of CH patients have episodes where CH is the worst thing in the world to have ever happened to them. The headaches stop and the path of least resistance is to shut up and go back to work. I don't blame them, I would too. Society encourages silence and participation in the workforce. I still have daily troubles with having the term "Headache" effectively convey the severity of my condition to the rest of the world. It is a disability.

Little blue signs with pictures of wheelchairs on them do not help society to recognise CH as a disability. We need a sign for public toilets that has a symbol signifying an axe jammed into someone's forehead before we will get any public recognition.

Due to their solitary nature, I use disabled toilets to inject Imigran then recover from attacks, generally hang off the rails, dispose of my sharps, rinse my face off in the sink, then venture forth once the attack has been aborted. You should see the looks and comments I get from members of the public when I "walk" out of a disabled toilet. They expect to see a wheelchair, or a permit, or some more visible form of disability.

I apologise for the rant. My recent research into disability forums in the last few days has been disheartening. Everything there seems to ignore disabilities that are not immediately and visually apparent to the naked eye. The public perception still unfortunately revolves around the image of a person in a wheelchair. I have nothing bad to say about the “wheelies”, in fact – they are the ones who understand why I am forced to use a disabled toilet to abort an attack. They get marginalised too and generally do not make assumptions or sweeping generalisations about the appearances of disabled people. As I leave a disabled toilet with my bleary eyes, looking pasty, sweaty and grey, I have never once been glared at by someone waiting in a wheelchair.

So, this is why I spend my time researching and writing these expansive posts, in the hope that I can do my bit to raise awareness. It could be you who needs to hide out in a disabled toilet one day.

I know this thread is called "Why do you get them?"

But I ask the broader question of society: "Why DON’T you "get" them?"

I hope we can all get some recognition for CH in the wider world.
It would help a lot of “normal” people to understand.

Roger has made an immense contribution to the cause in creating this platform for us.
I commend his efforts in building this site, whilst being a CH patient at the same time.
Put your hands together for Roger people!

Sorry to everyone for the lengthy novels I write…

Thanks for reading.

Cheers, Ben.

Posted in Untitled on 12 Mar, 2011 - 1:27 pm


Wait until you see the second one - It will blow you away.
Everybody likes to speculate about what CH is.
Here is 800 pages of what it isn't - so if we all get reading on this document whilst it is still available, we shall all be a lot wiser.

It also includes what we do know about CH to date and comprehensively answers most of the questions posed on the site. It appears to be the latest, most definitive and comprehensive paper on headache published to date.

Not exactly light reading, but if anyone can make it through this material, your questions will be answered. Get your hands on it before it disappears!

I have access to many more like it that have since evaporated from their original sources.
If anyone would like access to this body of reference material, I can be contacted via PM and I would gladly pass on any documents through Email.

Cheers, Ben.

Posted in Untitled on 12 Mar, 2011 - 1:03 am

Hi Matt,
Welcome to the site. I will try to offer my non-professional, non-medical personal opinion, based on my own experiences and your account written here. The welcoming commitee will show up soon enough and cover all the bases that I have not. I am a technician (And CH patient of 30 years) so I will attempt to apply my cold logic and analytical approach to help you with your situation.

A third stint in hospital in 4 months tells me that you are not being properly investigated and/or diagnosed. In my opinion, your GP can't be "across" CH if you are in and out of hospital on heavy opiates without further investigation. I would advise you to persist with specialist care and keep an open mind with your Neurologist. I know this can be hard, especially when you are suffering. Only specialists seem to be able to offer reports back to your GP that are then taken seriously and acted upon. These sorts of reports will help to get diagnoses and treatment moving along and also educate your GP about the intricacies of treating and managing CH, if you are unlucky enough to have acquired the condition.

You mention pain in both sides of your head. CH is almost always exclusively unilateral. Even in patients who experience pain in both sides of the head - it is most often unilateral during episodic attack, switching only from side to side, not both sides simultaneously.
Stereo CH is very rare. Which leads me on to other types of primary or secondary headache.

If you have had MRI and CT scans, the anatomical nasties like aneurism and tumours I will assume have been ruled out. The diagnostic radiologist who viewed your scans would have written any nasties into their report, if any had shown up. Tearing in both eyes is interesting. I know it gets a mention in CH literature, but tearing also, is almost exclusively unilateral. Unless like me - you get no tearing at all during an attack. At this point I am personally leaning toward ideas around acute Migraine...

The high temperatures are not something I am aware of in CH medical literature. However, I have seen elevated temperatures in Migraine literature and secondary headache disorders. This is where the headache itself is not the primary condition. The headache is symptomatic of yet another underlying condition, infection or disease.

Headaches that last for days? Again, this points me away from CH, possibly in the direction of acute Migraines. This is certainly not a typical description of CH.
CH will give you rapid onset attacks, triggering in as little as 30 seconds. A typical (Unmedicated, untreated or unaborted) CH attack will last anywhere from around 15-90 mins, sometimes up to 3 hours. Frequency of attacks can be up to 8 times per day. But a distinct ON - OFF pattern will quickly emerge.

Most CH patients will tell you that they are acutely aware of when an attack is coming on. There is also no doubt in their mind as to when they are in the midst of a CH attack. The only thing going through their mind at this point is the attack itself - there is simply no room for any other sensory input. They will also have a good grasp on when the CH is diminishing and finally leaves them. This makes CH attack almost a binary occurence - the only good thing about such distinctive attacks is the ability of the sufferer to accurately document their attacks in a headache diary. Something I recommend that you do.

A specialist can be aided greatly in the diagnoses of CH when presented with a patient's own record of their condition. Documenting the time of onset, severity of pain, duration of attack and your response to it (Use of medication, sleep, attending hospital etc) will be most helpful information for any presiding medical practitioners.

With headaches that last for days, I would be looking at Migraines, Trigeminal Neuralgia, or a myriad of possible other causes not yet isolated by medical tests, like an organic headache or an infection like meningitis for example. I am not a doctor - I don't know which of these it may or may not be. My experience with CH tells me intuitively that something else may be going on here...

I realise the pain must be excruciating, especially if the list of drugs you have been administered is not touching the pain. These opiates and barbituates are the fast-track to nowhere. Any CH aware GP would have trialled preventive medication by now, rather than have you taking up a hospital bed and poisoning your body with these heavy drugs.
3 oxycodone and 8 Mersyndol per day for any length of time will have your pathology tests going haywire. Your liver will pay the price if a preventive medication is not found soon.

In my 30 years of severe, chronic and intractable CH, the strongest pain medication I have ever been prescribed is Panadeine Forte. I am living proof that with access to the right drugs at the right time, the likes of Morphine and other strong opiates are not necessary in CH management. My CH specialist will back me on that one.

If in your shoes, I would be seeking a CH aware GP and possibly more opinions. I would be seeking clarification of diagnoses - there are clear diagnostic procedures in place to ascertain what type of head pain you are experiencing. Here are a couple of diagnostic resources that mention other types of headache:

I must stress that these documents are not intended as a substitute for medical advice.
These documents were intended for use by medical practitioners only. However, I have been encouraged over the years by many specialists to research my own condition and educate myself on it. But never to leap to conclusions and self diagnose.

It is not exactly light reading, but you may just find a set of symptoms or criteria that fit your condition "like a glove". Your Neurologist would probably be glad if you had already found an avenue of investigation for yourself. You can always ask a question of the specialists, the worst they can say is "No".

I see that your Neurlogist is putting you on the medication merry-go-round.
Good luck with the search for preventive medications. You really should have access to some abortive medications aswell - ask about these, it will keep you out of hospital and in better shape than the Morphine will. You may be able to claw back some quality of life.

Through your GP and local Pharmacist you can be prescribed a range of preventive and abortive medications. Due to the low prevalence of CH in the general population, your GP has probably never seen or treated CH before. It is usually a matter of GP awareness - (or lack thereof) they do not routinely prescribe medications that they are not familiar with.

Some ideas...

Just a few introductory preventive medications for starters:
Lithium Carbonate/LithiCarb

You will often need to either be taking or have tried preventive medications before abortive medications will be offered to you via prescription.

Some abortives:
Sumatriptan (Imigran) as a tablet, nasal spray or injection
Oxygen treatment

There are many, many more preventives and abortives used in the management of CH.
Others will have suggestions that may be helpful too.
I have personally trialled over 50 different drugs. Most don't work for me, but I must stress - do not give up hope!
There will be a drug that offers you relief. It takes patience and persistence to find what works for you. I have catalogued over 330 chemical compounds identified as treatments used in CH.
So there is a way to go yet.

Good luck with it all, keep your spirits up. (Not the Alcoholic variety...)

Remember - I am not a Doctor. Always seek medical advice in relation to treatments for any medical condition - including CH investigation.

Must go to bed now - head is getting rather sore, time for an injection I think...

Cheers, Ben.

Posted in Untitled on 11 Mar, 2011 - 6:48 am

I found a good document or summary of CH, what it is, why it occurs and recent lists of available/known treatments. As written by the world's best and brightest. Usually found inside expensive and inaccessible medical journals, this one is an excerpt from a seminar on Neurology.

Here is a link to a download portal where you can get your hands on some of these elusive clinical trial outcomes. The following is an example of accurate and often costly medical literature that is regularly withheld from the public domain and thus CH patients.

Link into this file sharing site where you can download the PDF (using the blue "Download now" button with the arrow pointing downward) before viewing it on your own copy of Adobe PDF reader.

Another link to a download of a Handbook of Neurology, 700+ pages comprehensively outlining headache:

Posted in Untitled on 11 Mar, 2011 - 6:30 am

Another article relating to the importance of accurate information for online users:

Posted in Untitled on 11 Mar, 2011 - 6:18 am

Some recent oxygen trial results. It appears it may be even more effective than previously thought. Barry may be onto something...

Posted in Untitled on 10 Mar, 2011 - 2:00 am

Hi everyone,
I picked up one of these at a second hand shop for $10, just as an experiment.

I am sure there are newer, quiter, more expensive ones available...

I heard somewhere that Negative Ions are produced by lightning strikes during an oncoming storm.

I don't know about anyone else, but the smell of rain with a storm on the way clears my head rather well, especially if it is already sore. This unit produces Negative Ions (Don't worry they are safe - I was an RF technician specialising in microwave and satellite communication. Without going into pages of technical detail - it's safe for use around the home).

This one is a Sunbeam. The "HEPA" part is a hospital grade air filter:
Good for anyone with cats, asthma or concerns about triggers like dust, airborne allergens, pollens etc.

I ran the thing last CH cycle and noticed a couple of small improvements.
Air quality seemed better, mainly because of the volume of air this thing can circulate through it.
It seems to filter and turn over all the air in a master bedroom at least once every 15 minutes.
When I turned the ioniser part on (Separate switch), I got the smell of a fresh oncoming rainstorm in my room. It is a strange smell at first, not unpleasant, but easy to get used to. It was fantastic!
It gave me a feeling of being at altitude in a cool breeze, even when I wasn't.

It is purely anecdotal and I have not researched it yet. There is no evidence to suggest that it helps with CH. It certainly won't abort an attack. But I was waking up a lot clearer after my Imigran injection/sleep thing I have to do. My head was not as thick as it was if I accidentally left the unit turned off.

It is pretty cheap, works well, may offer a minor benefit.
I know most of us will take a 5% benefit where we can get it, just to claw back some sanity.

I doubted it would do anything, but for $10, it was worth a try. Anecdotal?, placebo effect?
Maybe, who knows? But it costs so little to run and I know I wake up better after an attack.

Anyone else tried one?

Cheers, Ben.

Posted in Untitled on 10 Mar, 2011 - 12:03 am

Posted in Untitled on 04 Mar, 2011 - 6:33 pm

Thanks to the welcoming committee for the warm welcome.

Has anyone had any input to contribute to the SAD/CH theories yet?
I will be seeking melatonin soon and I am looking for some experiences from others.
How sleep patterns are affected, or disrupted etc.
I am quite interested to get into this topic for discussion.

I have been getting on average 4 hours per day sleep anywhere in the 24 hour period in the past few weeks and I am left very tired during the day, having naps after Imigran use etc.
Feeling sleepy behind the wheel, yes it is dangerous, I know.
I take rests if it is bad.

I will be back in consultation with my specialist in 2 weeks after a record equalling remission of 9 months - something I have not experienced since 1996.

I saw the first March fly on the ground a few weeks ago and bang - my CH fires up again.
These flies know when to hatch, right down to the nearest week out of a calendar year.
Would it be any co-incidence that my CH usually flares up at this time?
When I first see a March fly each year, I almost go into spontaneous panic at the mere thought of oncoming CH (if it isn't already full on).

There has to be something the brain is recognising, in order to go into CH with such regularity. This is why I am sniffing around the links with SAD, Hypothalamus dysfunction etc...

Any ideas???

Cheers, Ben.

Posted in Untitled on 03 Mar, 2011 - 3:20 am[/

Posted in Untitled on 03 Mar, 2011 - 3:05 am[/

Posted in Untitled on 03 Mar, 2011 - 3:01 am

Hello to all,
Yes I am back. Some persuasive PMs from other users coupled with my own pathological need to help others with CH has convinced me that (mainly through my specialist's research) I may occasionally still have something valuable to contribute for the benefit of others. I recently saw that one of my posts on Aspirin directly helped another CH patient. This helped someone. A positive outcome - Great news.

Isn't that what this is all about?
I can't ignore the compulsion within me to help, at least between attacks anyway.

I will spare you all my expansive writing style as seen in my previous posts.
I apologise to those that were offended. I have stated my convictions in previous posts.
I will tone it down and stick to research and new ideas only.

Thanks for everyone's support.

Onto some ideas that Barry was talking about on "Latitude and atitude".

My specialist spends a lot of time jetting around the world working on CH. He has reported some interesting ideas back to me. He commented on recent links between SAD and CH.
Being a jetsetter himself, moving throughout many timezones, he knows the feeling of upset circadian rhythm personally. He told me of CH patients going into spontaneous remission or into a CH phase when moving into or away from areas like Alaska, where it can be light or dark for most of each season. There seems to be some merit in the idea that light/dark cycles affect the Hypothalamus and thus our respective CH conditions.

I want to throw some ideas around about links between Circadian Rythyms, Melatonin, Hypothalamus, Light and dark periods, light therapies, sleep cycles and any observations people out there might make on the subject.

Please expand on the idea, or include your experiences with CH in relation to travel in and out of areas where the light/dark cycles are greatly varied e.g. polar regions vs Equatorial regions. I have very little experience in this area and would be interested to hear what others think.

Some starting points:

Funct Neurol. 1998 Jul-Sep;13(3):263-72.
Cluster headache and periodic affective illness: common chronobiological features.

Costa A, Leston JA, Cavallini A, Nappi G.

University Centre for Adaptive Disorders and Headache (UCADH), Section of Pavia I, Italy.

Many of the seasonal changes occurring in animals appear to be associated with photoperiodic modifications, and particularly with the duration of the phases of exposure to light and dark. The integration of these processes is made possible by the normal functioning of biological oscillators or synchronizers, presumably located at the hypothalamic level. Cluster headache (CH), seasonal affective disorder (SAD) and bipolar mood disorders are conditions bearing numerous analogies, particularly as regards the temporal pattern of disturbances, the nature of predisposing or precipitating factors, the peculiar relationship with sleep, the neuroendocrine findings, and the clinical response to current treatments. The secretion of melatonin, which is influenced by the light/dark cycle, displays a bimodal pattern, which is likely to be dictated by the activity of distinct synchronizers for light and dark. Changes in the secretory pattern of this neurohormone have also been documented in both CH and SAD. The possibility of normalizing the secretory rhythm of melatonin by means of phototherapy in SAD, and the therapeutic use of the hormone to prevent the recurrence of active phases in CH, represent further interesting similarities between these two disorders. Melatonin, acting as a unique neuroendocrine transductor of photic inputs, may therefore be viewed as a marker of dyschronic disease to be used in patients suffering from CH and affective illness, for both diagnostic purposes and to assess the response to pharmacological and non pharmacological treatments.

Child Psychiatry Hum Dev. 2001 Fall;32(1):45-54.
Serotonin mediated cluster headache, trigeminal neuralgia, glossopharyngeal neuralgia, and superior laryngeal neuralgia with SAD chronicity.

Weiss JL, Weiss KL, Benecke SM.

University of Michigan, 1500 East Medical Center Drive, Ann Arbor, MI 48109-0030, USA.

Cluster headache is a rare and severe pain syndrome with elusive pathophysiology. Serotonin pathways within the brainstem may be implicated in cluster headache with seasonal affective disorder and a subset of cranial nerve neuralgias. We describe and chronicle a syndrome consisting of cluster headache, seasonal affective disorder, with associated trigeminal, glossopharyngeal, superior laryngeal neuralgias in an 11-year-old female. Pharmacologic interventions for this patient were examined in conjunction with current classification, location and function of serotonin receptors. Etiology is postulated as mixed cranial nerve excitation via endogenous 5-HT (agonist) activity of 5-HT3 receptors within the nucleus tractus solitarius and trigeminal tract nucleus.

Posted in Untitled on 24 Feb, 2011 - 3:18 pm


Not Found
The requested URL /src/delete_account.php was not found on this server.

Additionally, a 404 Not Found error was encountered while trying to use an ErrorDocument to handle the request.
Apache/1.3.41 Server at Port 80

Posted in Untitled on 24 Feb, 2011 - 3:15 pm

Hi to all,
As I move from the February Dragon on into the Ides of March I am working my way up into the realms of 6 to 8 Cluster attacks per day. Time away from CH is short and I have many productive and positive things that I wish to do with it, away from the internet.

I came here to help people. I believe that I did so in the short time that I was here.
In my quest for accurate information for CH patients, I have informed and offended, for that I apologise.
Maybe there is something yet to be spoken of on the forums, with relation to deterioration of one’s psychological condition at the prospect of relentlessly severe, chronic, intractable Cluster Headache.

I have imparted as much personal experience and research as I possibly and productively can before I am once again consumed by CH and all that it entails.

If my history is anything to go by, the tics and tremors have begun already, I will experience permanent Migraine, occasionally interrupted by 4 hourly Cluster attacks, the whole while revolving around variations on the foetal position as I look for any previously unused skin in which to stick my next Imigran injection.

More drug trials will commence. Surgery will be spoken of yet again.
My psychological state will further deteriorate. Side effects of medications will rule every minute that I may be spared the pain of CH. I will have my hands more than full once again.

I will look forward with anticipation to my next remission, due sometime around 2020.

This is my reality. I have known no different since the day I was born.

So, it is with a heavy heart beat and a conjunctival tear in one eye, that I leave you all so I can crawl away and suffer in peace. I will no longer be participating on the site.

Most people on this site have been fantastic, they have helped me – you know who you are.
Some haven’t – you also know who you are.

Thank you. To all those people who have helped me.
I wish all CH sufferers well in their respective journeys.

Sorry, Roger. Despite comprehensively documenting over 330 chemical compounds used in CH treatment, I never did get that accurate Medication database completed.
My altruistic ideas are a promise my body cannot keep.

Cheers, Ben.

Posted in Untitled on 24 Feb, 2011 - 8:14 am

Hi to all,

The following is my opinion only, I take responsibility for it. Users should make up their own mind about the validity and merit of the content contained in this post.

During my own personal research, experiences and enquiries into Verapamil use in CH treatment, I have repeatedly come across strong medical evidence to support the claims of leading medical specialists that ECG or EKG monitoring in CH patients using Verapamil should be routinely carried out.

Dr Peter Goadsby, throughout his body of work, repeatedly emphasises the importance of regular ECG monitoring when using Verapamil in the treatment of CH. The available body of medical literature on Verapamil use in CH points to this and speaks for itself.

See part 4 of 8 of Goadsby’s lecture on youtube for his comments in relation to regular ECG monitoring in CH patients whilst taking Verapamil. The full lecture is available in 8 parts at youtube.

Whilst I am not a Doctor either, as a long time CH patient I am very concerned and find it difficult to take on board that a self proclaimed "Doctor" (implied qualified Medical Practitioner) would hand out any specific medical advice through any public forum, whatsoever.

In my experience - any qualified medical practitioner should encourage and recommend direct consultation between doctor and patient on an individual case by case basis in the correct clinical setting before giving advice publicly.

Users may misinterpret any information given on any public forum by a self-proclaimed "Doctor" as a substitute for, or constituting sound medical advice, in and of itself. This seems to me to be somewhat dubious, unprofessional and questionable behaviour for any qualified health care practitioner to be engaged in. For me, it is cause for great concern.

I suspect that there are laws governing Medical practitioners in relation to giving professional medical advice outside of the proper clinical setting (e.g.; paid consultation, public liability insured, Medicare sanctioned consultations with a qualified GP with a Medicare provider number through a recognised medical practice or Hospital). But I am not entirely sure; I am only a patient – not a medical lawyer.

I may not win any friends with my comments.

I have methodically read all of Kerry's posts. I would encourage you to do the same.
I question the validity of Kerry/Katie/Keriblu's claim to being a "Doctor".
Or at least, the specific type of "Doctor" qualification and it's relevance to the giving of medical advice on public forums. If she wishes to publicly offer advice contradicting Dr Goadsby’s professional recommendations, then I fear patients may be in receipt of inaccurate information.

If she is a qualified and licensed medical practitioner, then it is my personal opinion that she is conducting herself in an unprofessional manner. Despite her clearly well intentioned approach.
If she is here solely as a CH patient, then I assume without prejudice that hers or anyone else’s input would be very welcome by all. After all, it would be of huge benefit and a gold mine for us all to have a CH patient who could use their personal expertise to point us in the direction of the practitioners who are in a position to help us in the correct clinical environment.

I am open to corrections and a public apology, should her claim become substantiated.

In my opinion, there should be a clear cut distinction and separation made between the theories, speculation, experiences, ideas and opinions expressed by CH patients (their families, friends and support networks) on public forums and those of a qualified medical practitioner.

In my view – a lack of separation between public forum participant and declared medical practitioner constitutes a professional conflict of interest, especially if that practitioner is publicly engaging in the giving of medical advice.

I have never made claim to be anything other than a long time CH patient.
I do not wish to offend or upset any users, but lives are potentially at stake.

I unreservedly apologise if this causes site admin, any moderators or users any difficulties whatsoever.
I expect these statements will polarise discussion and light up the forum with robust debate.
I am putting my neck on the chopping block here, because as a patient, I firmly believe in the right to access accurate and correct information.
I feel that my participation on this website reflects this sentiment.

If I get the boot from this site for expressing my personal opinion and the strength of my conviction in the interests of patient safety - so be it

Cheers, Ben.


Once again – Goadsby’s lecture:

An excerpt found during my research from an article from our friends at

Electrocardiographic abnormalities in patients with cluster headache on verapamil therapy

1. Anna S. Cohen, MRCP, PhD,
2. Manjit S. Matharu, MRCP, PhD and
3. Peter J. Goadsby, MD, PhD, DSc

+ Author Affiliations

From the Headache Group (A.S.C., M.S.M., P.J.G.), Institute of Neurology, The National Hospital for Neurology and Neurosurgery, Queen Square, London, UK; and Department of Neurology (P.J.G.), University of California, San Francisco.

1. Address correspondence and reprint requests to Professor Peter J. Goadsby, Institute of Neurology, Queen Square, London WC1N 3BG UK


Background: High dose verapamil is an increasingly common preventive treatment in cluster headache (CH). Side effects include atrioventricular block and bradycardia, although their incidence in this population is not clear.

Method: This audit study assessed the incidence of arrhythmias on high dose verapamil in patients with cluster headache.

Results: Of three hundred sixty-nine patients with cluster headache, 217 outpatients (175 men) received verapamil, starting at 240 mg daily and increasing by 80 mg every 2 weeks with a check electrocardiogram (EKG), until the CH was suppressed, side effects intervened, or to a maximum daily dose of 960 mg. One patient had 1,200 mg/day. Eighty-nine patients (41%) had no EKGs. One hundred eight had EKGs in the hospital notes, and a further 20 had EKGs done elsewhere. Twenty-one of 108 patients (19%) had arrhythmias. Thirteen (12%) had first-degree heart block (PR > 0.2 s), at 240 to 960 mg/day, with one requiring a permanent pacemaker. Four patients had junctional rhythm, and one had second-degree heart block. Four patients had right bundle branch block. There was bradycardia (HR < 60 bpm) in 39 patients (36%), but verapamil was stopped in only 4 patients. In eight patients the PR interval was lengthened, but not to >0.2 s. The incidence of arrhythmias on verapamil in this patient group is 19%, and bradycardia 36%.

Conclusion: We therefore strongly recommend EKG monitoring in all patients with cluster headache on verapamil, to observe for the potential development of atrioventricular block and symptomatic bradycardia.


Disclosure: The authors report no conflicts of interest.

Received August 19, 2006. Accepted in final form March 12, 2007.

Posted in Untitled on 21 Feb, 2011 - 8:27 pm

Hi Pauline,
I am very sorry to hear of your battles with headaches. Especially for younger people, I have had CH since I was about 4 years old (that we know of).

I am not a doctor or trained medical professional, but in the spirit of helping others on this site, I will venture an educated guess based on my own research and experiences. Remember to seek diagnosis and treatment from qualified and experienced medical professionals.

Firstly to your headaches and recent experiences with Emergency department treatment for CH. You report that you were diagnosed with CH 6 years ago. Whilst there are no confirmatory tests for CH there are a set of criteria that should be met in order to ascertain a correct diagnosis of CH. To me, your headaches sound very painful and intense, I am indeed sure they are very debilitating. I am not so sure that your CH diagnosis is correct. GPs are generally not very good at assessing CH. It is a specialist area.

What sticks out in my mind the most is the duration of your headaches (6-7 hours) which seems highly inconsistent with CH in my research and experience. CH episodes are usually shorter, my research indicates a range of statistics from many different sources that state duration of CH episodes at anywhere from 20 minutes to 4 hours maximum. With up to 8 attacks per 24 hour period. I have been known to have 3 complete episodes of approx 90 minutes each from start to end within this time frame of 6-7 hours. This is more like the classic characterisitics of text book CH. Although I would prefer not to dish out my own "armchair dignoses" to people - I would venture an educated guess that your CH diagnosis may me incorrect or swiftly/dubiously conducted by an inexperienced medico. Your type of headache sounds like an equally painful type of headache, though I could not speculate as to which exact one from my position.
Please see the I.H.S. diagnostic criteria in the links below.

I note that it is odd for a CH to last for so many hours, but have so few episodes in a calendar year. The ineffectiveness of Sumatriptan may also be another important point. You are right, after 6-7 hours, it would be very difficult to tell the difference between the administration of an effective abortive medication, or the headache running it's natural course and "Tapering off" by itself, as they do.
Some Sumatriptan literature suggests that the drug must be administered immediately at the onset of an attack, or the abortive effects of the medication may be greatly reduced. Or in my case - non-existent.

If I get onto the Imigran (Sumatriptan) injections or FDT tablets quick-smart, they work well. If I am delayed for some reason and cannot inject Imigran for 20 minutes after the onset of an attack, then it becomes far less effective for me.

Please refer to the forum thread on this site: "Accurate Consumer Medical Information (CMI) Drug Manufacturers Data Sheets" for some useful links to diagnostic criteria for CH, mainly these two links to the International Headache Society, that I have duplicated from my research here for you.

In their defence - most Accident & Emergency staff are neither trained to deal with, nor aware of CH. I have spent many frustrating occasions in Emergency departments early on in my CH condition, trying to seek answers. This is not the place or time to get accurate diagnosis or treatment. I know this can be very frustrating, especially when you have presented mid-headache and no solutions are forthcoming. NIce to see a nurse attempting pain relief for you, but Tramadol will not touch CH. Have you tried soluble aspirin? Or been prescribed Indomethacin? Just some ides that have worked for others in your position...

Navigating the complexities of the health system whilst in acute pain (mid-attack) is often an alienating and self-defeating exercise. Despite your previous experiences with GPs and Neurologists, I would susgest presistence down this avenue. Perhaps a second and third opinion from a different "CH aware" GP who is prepared to refer you to a (PMU) Pain Management Unit for multi disciplinary medical care.

Pain units often have access to many angles of approach for your condition. My PMU at the Royal Adelaide Hospital offers me the direct services of: Neurology, Pharmacology, Physiology, Physiotherapy, Psychiatry, Psychology and many more, all in a patient focussed, clinical environment. They ask the right questions, offer many treatment options and liaise between different medical specialists to make sure that you get access to the care you need. These units are where the extensive experience lies.
Not down in Emergency dept, I am afraid...

PMU specialists can also write you a cover letter for when you do need to present at Emergency. I have one that basically says "Attention Doctor(s) and/or nursing staff. This guy is very sick, he needs this, this and this - pronto. Don't mess him around or you will be fronting up to the big wigs on Monday morning. Get onto it now, his CH is a serious condition, not to be taken lightly or treated with 2 panadol and sent home etc. etc." It includes 24 hr contact phone numbers for PMU specialists, should Triage or Emergency doctors try to delay my admission to Emergency Department. This tends to get their attention and me my treatment - pretty fast. So, some advocacy from medical professionals in your corner will help you no end. I think you need some experienced specialists "On your side" to help you.

I would think that if your pain was so strong as to bring you to the point of vomiting, oral administration of Sumatriptan is less likely to work. You could either vomit the medication back up, or your gut will shut down and will not absorb the drug.
When I get to pain/vomit threshold, I have Maxalon ([
) to control vomiting first. Then I can think about oral drugs staying down and having the time to work. Emergency Depts. have Maxalon in injectable form - ask them next time, it will help immensely. Then you can get onto the oxygen and abortive medications quicker. It can be quite difficult to vomit through an oxygen mask....(sorry, but ain't it the truth?)

I strongly disagree with Kerry's statement; "Your daughter's headache does not sound like Cluster Headaches so you should not worry about it." Any GP worth their salt would commission basic CT scans, (or other possible tests) to exclude the unlikely possibility of any other anatomical nasties like tumors or aneurism before immediately jumping to the conclusion that one has CH. This is basic medicine folks and routine practice in preliminary CH investigation. I was ignored and overlooked for CH as a child - largely because of dismissive statements like this, it took me 19 years of hell before I could get a CH diagnosis. Please, don't let my situation be repeated with your Daughter. smile

As for the hereditary links. There was mounting speculation in the mid 90s that a gene was responsible for CH appearing in families. (Not to be confused with a proven hereditary gene prevalent in Migraine headaches.) More recently, studies have shown that this may be true, but links are tenuous and the prevalence low. CH is a very unpredictable and problematic condition to study in large numbers of people. I can find much evidence to support arguments for and against the theory of inheritance of CH. In my unprofessional view, the likelihood of incidence of inhereted CH is only marginally higher than the prevelance of CH within the general population. My Grandmother has a major headache disorder, as do I. In the end there is no test to confirm any link between our causal factors. Even if we both had access to this information, it would not provide either of us with the solace of a cure. So, inhereted or not, there is nothing her or I can do about our conditions.
I used to be curious about hereditary links, but mid-attack, that hardly seems to matter.

Good luck in your search for diagnosis and treatment.

Cheers, Ben.

Check out PubMed for some useful data:

Some research I located there for the benefit of users:

2004 May

Epidemiology and genetics of cluster headache.

Russell MB.

Department of Neurology, Akershus University Hospital, Oslo, Norway.

Cluster headache, the most severe primary headache, is characterised by unilateral pain, ipsilateral autonomic features, and, in many cases, restlessness. Recent epidemiological studies indicate that the prevalence of cluster headache is about one person per 500. Genetic epidemiological surveys indicate that first-degree relatives are five to 18 times-and second-degree relatives, one to three times-more likely to have cluster headache than the general population. Inheritance is likely to be autosomal dominant with low penetrance in some families, although there may also be autosomal recessive or multifactorial inheritance in others. To date, no molecular genetic clues have been identified for cluster headache. Identification of genes for cluster headache is likely to be difficult because most families reported have few affected members and genetic heterogeneity is likely. Future focus should be on ion channel genes and clock genes. This review summarises the epidemiology and genetics of cluster headache.
1995 Dec

Cluster headache is an autosomal dominantly inherited disorder in some families: a complex segregation analysis.

Russell MB, Andersson PG, Thomsen LL, Iselius L.

Department of Neurology, University of Copenhagen, Denmark.

We investigated the mode of inheritance of cluster headache in 370 families. The probands were from a neurological clinic in Jutland and two departments of neurology in Copenhagen County, Denmark. The criteria of the International Headache Society were used. The patterns of segregation of cluster headache were assessed by complex segregation analysis performed with the computer program POINTER. Of the 370 probands with cluster headache, 25 had 36 relatives with cluster headache. The segregation analysis suggests that cluster headache has an autosomal dominant gene (p < 0.10) with a penetrance of 0.30-0.34 in males and 0.17-0.21 in females. The gene is present in 3 to 4% of males and 7 to 10% of females with cluster headache. An autosomal dominant gene has a role in cluster headache in some families.

Posted in Untitled on 19 Feb, 2011 - 8:53 am

Hi again,

Anyone checked out this book, or got a copy of it?[/L

It may be yet another line of enquiry in the neverending search for accurate and up-to-date CH drug information.

The HTML link to this is not working, to check this document out you will have to copy the address and paste it into the navigation bar of your web browser... sorry.

Or Google - "Australian Drug Guide" by Jonathan Upfal

Cheers, Ben.

Posted in Untitled on 19 Feb, 2011 - 8:45 am

Hi to all,

Another interesting starting point for CH research.
Posted in the interests of accurate information for CH patients.

The Australian Government's "Theraputic Goods Administration" (TGA) website.
An A-Z listing ot TGA resources for public reference.

Cheers, Ben.

Posted in Untitled on 18 Feb, 2011 - 11:14 pm

Hi to all,
Here is a post for all the long time Verapamil users. I used it for a while in 2004-2005 (about 9 months) until my heart rhythm could no longer be controlled at the dosages required to hold back CH. I can honestly say that for me, Verapamil probably caused more headaches than it blocked.
This was due to the drug wearing off and causing CH rebound attacks. We persisted with varying dosages and delivery methods at differing times of day, I think I was taking 3 doses per day, 8 hours apart and getting a CH attack every 8 hours on the dot - Deseril (Methysergide) had much the same effect, though FAR more severe rebound attacks.

I only made it to 360mg of Verapamil per day or thereabouts, before I had a permanent Migraine and irregular heart rhythm. On Verapamil I could not get my heart rhythm high enough (anywhere above 80 bpm) for cardio exercise and I would tire easily when walking and get swelling in my lower legs. Due to the ineffectiveness of any exercise, I put weight on as a side-effect of Verapamil.

The junior (Trainee) Neurologist that was overseeing my case at the time failed to inform me of the requirement for regular ECGs. Not one ECG was performed whilst I was on Verapamil. The drug failed when my heartbeat became very erratic and nearly ground to a halt. The use of the drug was ceased by me. I still feel that my now permanent heart rhythm problems (now treated with Atenolol) were caused by the negligence and complacency of the presiding Neurologist (who shall remain unnamed) and a lack of ECG testing on his part. Everyone here from Goadsby down to the most introductory Verapamil user now knows that regular ECGs and monitoring are required.

I have read about a similar case from clinical trial results where nearly 1000mg per day of Verapamil was prescribed to a CH patient who had no ECG monitoring either - he now has a pacemaker implanted, due to the permanent damage to his heart and his now permanent erratic heart rhythm.

I am noticing in the previous posts that Verapamil may not be as effective as it once was for some people. Upping the dose is not always the best or first option with this drug anyway.

I was made aware that Verapamil has a distant cousin within the drug family of "Calcium Channel Blockers" or Calcium antagonists. It is called Diltiazem and goes by some other trade names: Auscard, Cardizem, Coras, Diltahexal, Dilzem, GenRx Diltiazem, Vasocardol CD.

It was later prescribed to me for CH as "off-label" experimental use through a hospital specialist. It gave me some relief for a while and the side effect burden was lesser than Verapamil in my case. My heart rhythm was much less impacted by the use of Diltiazem compared with Verapamil.
I still gained a pretty strong permanent Migraine from the use of this drug.
It seems "Calcium Channel Blockers" are not for all of us, but I thought I would pass on the idea, if Verapamil is beginning to fail you in your CH management, then maybe a switch to Diltiazem will work for you.

It interacts with a whole bunch of other drugs, so as usual, consult with your GP and specialist about this idea.

Hope this helps

Cheers, Ben

Posted in Untitled on 17 Feb, 2011 - 10:26 am

Hi once again,
Here is a link to the IHS Classification of Headache disorders:

If you did not already have a headache, you probably will by the time you finish reading this document - it isn't small and it isn't exactly "light reading" either.

But it may help some people distinguish their different types of Headache condition.

Cheers, Ben.

Posted in Detox? on 17 Feb, 2011 - 10:17 am

Hi Stix Al,

In the interests of publishing accurate information for the benefit of users, I have obtained some publicly available information to be freely shared amongst users. There seems to be a distinct difference between the two conditions you have listed, you may have misread, misquoted or otherwise misunderstood the specifics of the article you mentioned.

Like I have said before - no-one yet fully understands CH or the mechanisms that trigger them, there may well be a link between CH and trans-sugars that is as yet undiscovered.

I am not dismissing the validity your claims, to the contrary - every CH sufferer has important insight and experience to offer. It is my personal belief that the more ideas and evidence put out there by CH patients, more avenues of investigation are made available to the medical profession. Then we might get some answers and treatments.
If it wasn't for people like yourself throwing new ideas around, we may never have made any of the major medical discoveries and advances of the last century.

So, please don't take this information personally. A copy or link to the original article would be of immense benefit to the discussion here. But as you mentioned - it is no longer available.

There is a significant difference between Hyper- and Hypo- in medical terminology. Knowing whether or not you are a Diabetic or have had pathology tests to rule out or confirm the presence of Diabetes would be helpful at this point.

Source wiki:

Hypoglycemia or hypoglycæmia (not to be confused with Hyperglycemia) is the medical term for a state produced by a lower than normal level of blood glucose. The term literally means "under-sweet blood" (Gr. υπογλυκαιμία, from hypo-, glykys, haima).

The most common forms of hypoglycemia occur as a complication of treatment of diabetes mellitus with insulin or oral medications. Hypoglycemia is less common in non-diabetic persons, but can occur at any age, from many causes. Among the causes are excessive insulin produced in the body (hyperinsulinemia), inborn errors of metabolism, medications and poisons, alcohol, hormone deficiencies, prolonged starvation, alterations of metabolism associated with infection, and organ failure.

Hyperglycemia, or high blood sugar, is a condition in which an excessive amount of glucose circulates in the blood plasma. The origin of the term is Greek: hyper-, meaning excessive; -glyc-, meaning sweet; and -emia, meaning "of the blood".

Diabetes mellitus

Chronic hyperglycemia that persists even in fasting states is most commonly caused by diabetes mellitus, and in fact chronic hyperglycemia is the defining characteristic of the disease. Intermittent hyperglycemia may be present in prediabetic states. Acute episodes of hyperglycemia without an obvious cause may indicate developing diabetes or a predisposition to the disorder.

END ARTICLE-------------------------------------------------------------------------------------------------

After extensive searches, I was unable to singularly locate any current article from Harvard that included both the terms "Cluster Headache" and "Hypoglycemia".

However, I did find a few mentions of this theory elsewhere. There is a growing body of anecdotal evidence to support your ideas. I apologise if you have already seen these links, or may have contributed to the original discussions contained therein.

It's a long read, but here is the International Headache Society's "International classification of Headache disorders". It may have a listing for a form of headache caused by abnormal sugar levels:

I have never heard of any link between CH and blood sugar levels. But many Doctors and patients out there are far more qualified to speak on the subject than I. My blood sugar levels remain stable throughout CH phases and remissions. In my personal case, there is no established link. Had my blood sugar test results become erratic, I may have been able to pose the same questions that you have here.

I don't think it is a matter of anyone believing or trusting you. I know how this feels...I am more inclined to believe that people simply are not listening to you or taking what you have to say seriously. The medical profession and some people can be very quick to dismiss your ideas, to the detriment of all involved.

I hope this helps someone out there...

Cheers, Ben.

Posted in Detox? on 13 Feb, 2011 - 10:11 am

Hi to all,
Firstly, it is important for all CH patients to be aware that Western medical science does not yet fully understand the mechanisms at work behind CH. Medical research consistently and repeatedly states that society's best medical practitioners and scientists have little to no knowledge about what actually triggers CH or how to specifically isolate and effectively target CH with any type of treatment.

Our current understanding of CH is very limited.

Most CH patients out there are acutely aware of this.

It is my unprofessional view that gastrointestinal problems are so common, that they will show up in the CH population, as they do in a large cross-section of the general population. At some point throughout their lives, a majority of people will suffer from, or present with some form of gastrointestinal complaint. As a CH patient of 30+ years with gastrointestinal complaints, I would be hesitant to leap to conclusions linking ANY co-existing health or medical condition with CH. Be it gastro-intestinal or otherwise.

Please consult with medical specialists to investigate your condition(s).

In my case, almost every possible medical "link" with CH has been clinically investigated and categorically ruled out. My exhaustive investigations into links between CH and co-exisiting medical conditions at one stage had me thoroughly convinced that several other things may be contributing factors to my CH condition. The avenues of investigation never end. It can do your head in, bordering on hypochondria.
After 30 years of investigation, 50+ drug trials, countless procedures and extensive trial and error - I now think otherwise.

I too have experienced the pathological need to move forward, to "take control" of the situation and "solve" my CH problems. My exhaustive attempts to link my co-exisiting medical conditions to CH have only complicated and prolonged my CH diagnosis and subsequent treatment for my Doctors, Specialists and myself.
Whilst also making my life a very unpleasant experience.
Speculation on my part about possible links between conditions was fraught with disaster. It led me through 10 years of painful and unnecessary medical investigation.
Medical science and I were both left stumped in the end...

I still have CH...

(The only solid links I personally have left to investigate are currently centred around Circadian Rhythm, Melatonin, GABA structures, the dark-light cycle and sleep patterns:
AND the impending arrival CGRP receptor antagonists.
I will go into more detail on a new thread for those that are interested...)

However, despite my personal misgivings - there are demonstrated complex anatomical links and interactions between the gut and the Central Nervous System - including the Brain. Although CH is not yet fully understood, science can neither rule in or out the possibility of a connection between CH and Gastrointestinal function or dysfunction.
Some CH patients out there with co-exisiting gastrointestinal conditions may just be onto something, in relation to their specific individual case.

I would like to take the opportunity to make CH patients aware of another CH treatment called "Vagus Nerve Stimulation" (VNS). Although this line of investigation may seem somewhat dubious to some, there are many CH patients who still feel that their CH and gastrointestinal conditions may be linked in one form or another.

Some CH patients have already made significant improvement to their condition through use of this Nerve stimulation therapy.

Some reference material for your perusal...

Wiki article explaining the Vagus Nerve.

New York Times article on Cluster Headaches, featuring treatments including Vagus nerve stimulation:

Article on clinical trial results for VNS in cluster headache patients:

I hope this offers some insight to some people,
on the age-old question: "Head or Gut?"

Cheers, Ben.

Posted in Detox? on 12 Feb, 2011 - 9:18 pm

Sounds to me like you could do some research into nitrates in food products and how they affect if you haven't already done so.
Ham, bacon and some preserved or cured meats can contain high levels of Nitrates and have been known to cause some types of primary headaches in some patients.
I can eat a half a pig if I want to, regardless - I will get a CH attack when my head is good and ready. However, I have noticed that preservative laden, processed food products dripping with (220 preservative) can be a problem. Any pre-packaged deli meats (Hams, salami. mettwurst etc.) that have long use by dates are usually loaded and dripping with preservatives and nitrates.
Another one I have had to personally watch out for and avoid (Mid CH phase) is flavour enhancers, especially the E365 ones in Arnott's Chicken Crimpy biscuits.

List of E numbers at wiki:

Something to chew on...

I find Cashews much more helpful.

Cheers, Ben.

Posted in Have a laugh on 11 Feb, 2011 - 11:21 pm


Maybe the TARDIS is the problem with CH.
When I get an attack, I know my head feels bigger on the inside than it appears the outside...

Something for the Doctor Who heads out there...

Inbetween CH attacks - remember, have a laugh people!!! It's not all serious.

Cheers, Ben.

Posted in Untitled on 11 Feb, 2011 - 11:01 pm

Hi to all,
Another resource for accurate information about Headaches.
It may be of some use to newcomers to the site in ruling in or out their type of Headache condition(s):

The International Headache Society:

Some of you may be familiar with this site already, mainly for the newbies.

Cheers, Ben.

Posted in Detox? on 11 Feb, 2011 - 10:57 pm

Hi to all,
Some gastrointestinal insight from a long-time CH sufferer.

Nearly every drug datasheet or consumer information sheet will list some form of gastrointestinal side effect.. Some common, some not.

Any regular long term user of opiods will be familiar with constipation.
I recommend eating a bowl of Bran or high fibre grain every morning religiously.
There is new evidence to support the theory that bowel cancer rates and other gastrointestinal problems are dramatically reduced by the consumption and absorbtion of bran whilst in transit through the gastrointestinal tract.
Sultana bran, all-bran, bran flakes etc.

Check out the C.S.I.R.O's new supergrains too. There might be some merit in what they are currently researching.

For High concentration users of opiods (Codeine) etc. I recommend keeping a bottle of Prune Juice handy in the cupboard. If you are getting constipated to the point of straining, bleeding and either have Hemorrhoids or are at risk of developing them.
One good 250ml glass of prune juice per day should get the system working again.
Forget Metamucil or laxatives, they affect other drug mechanisims and uptake, have contraindications and can worsen existing bleeding problems.

Any users of Diclofenac (soduim or potassium ) (Voltaren), Indomethacin (Indocid), Ibuprofen, Aspirin or other NSAIDs will probably experience some gastrointestinal side effect or other throughout the course of their treatment. More likely stomach burning, indigestion, reflux, heartburn, ulcers or problems associated with the top end of the gastrointestinal tract. I have tried many unpleasant reflux drugs. They are all essentially based around the idea of drinking or otherwise ingesting chalk. When you are on something as strong is Indocid, this can be counterproductive. Especially if the Indocid does not work...

Every one's body is different, every drug is different and every individual responds differently to any given drug.

The first and most often overlooked problem is lack of water consumption.
Dehydration can be a major cause of primary headache (including CH) in MOST people.

Anyone on opiods, Topamax or any other CH treatment should be drinking an absolute MINIMUM 2 litres of water per day. Whilst on some particular CH drugs, during summer I have been known to knock back 4-6 litres of spring water per day.
Frequency of urination is ridiculous, but better this than develop Kidney stones from Topamax. Adelaide tap water is crap - up to 600-700 ppm of Total dissolved salts (TDS), not to mention the other impurities - such as flourides and chlorine concentrations. I have recently changed over to spring water - at $20 per fortnight for 44 Litres, delivered - less than 10 PPM impurities. I believe it is worth it in the long run.
At the very least get yourself a Reverse Osmosis (RO) water filter or Puratap.
It's your Kidneys that do all the work if the water filtration is not present.

Bright red bleeding from the rear end or spotting on toilet paper can be a sign of Hemorrhoids, overuse of Aspirin, NSAIDs, benzodiazipines, or some other CH drugs. Even Imigran has made this worse for some people. Small amounts of bright red blood appearing are not usually of major concern, once checked out by the right clinic.
Check with your Doctor.

If you experience darkening of the stool, or outright black stools. There may be a more serious problem that is allowing internal bleeding to take place further up the gastrointestinal tract. This will need quick medical examination to rule out more severe conditions.
Speak to your Doctor immediately if this happens to you.

I have found some evidence based around ideas that when a CH begins, the gut begins to shut down first. Most CH sufferers do not sit down to a 3 course meal during an attack - for obvious reasons. But hunger is usually not of the highest priority when in the middle of an attack.

There may be some merit in the "Full of it?" idea that has been propositioned on this thread.


Posted in Untitled on 10 Feb, 2011 - 2:19 pm

They want to do this to me too, so I would be interested to hear how it goes and what radio stations you can pick up etc...(just kidding) Good luck with it.

Cheers, Ben.

Posted in Untitled on 08 Feb, 2011 - 11:59 am

I was on Topamax once for 9 months. No headaches - great!
It was not recommeneded to me. I found it whilst researching. I pressed hard for it to be prescribed to me. My specialist reluctantly advised my GP to prescribe it for me.
I basically went on the drug against medical advice. The drop-out rate amongst users is 50% in the first few days to weeks - it is a hard drug to tolerate. The side-effect burden is staggering. If you read the full list of possible side effects, I got the lot. All of them.
There was also a high probability that it would not work for me, but Topamax is a drug all on it's own. An oddball.

Even though it is considered an anti-convulsant (Epilepsy drug) it is not considered part of any other family of drugs.
I had already done other anti-convulsant drugs Keppra (Levetiracetam), Lamotrigine, Valproates etc.
So I thought it was time to try Topamax.

I was only on 100mg, then the attacks started to break through at the 9 month mark and my dosage was increased to 125mg. Within 2 weeks of the dosage increase I collapsed with atrial fibralation. I turned blue and grey, passed out and was taken to hospital in an ambulance.

I ceased Topamax cold turkey that day and never went back. I had one minor rebound cluster attack (treated with an Imigran injection) and no further headaches that could be attributed to the withdrawal of the drug.

The legacy Topamax has left me with continues to this day 18 months later. I was left with the full side-effect burden even after cessation of the drug. As a direct result of Topamax toxicity, I have been left with erratic heart rhythm problems (now treated with Atenolol) and a permanent major panic disorder (treated with alprazolam). Nearly dying freaked me out immeasurably...

Topamax really put my head through the meat grinder. I would find myself taking my morning dose then going back to bed to pull the sheets over my head for 3-4 hours until the peak concentration had passed. I was emotionally fragile all the time. I would spontaneously burst into tears anywhere, anytime. I was uncharacteristically agressive and violent to those around me, though I did not hurt anyone. I had suicidal thoughts most of the time whilst I was on Topamax. I walked around studying which building I was going to jump off first.
It was all I could do to refrain from acting on my bad thought patterns.

I am the one at fault, I persisted against good advice because I got RELIEF from CH for the first time in 15 years straight. It is the ONLY drug that has been able to block the pain of CH.

And you now what? I wouldn't take that crap again if it was the last drug on earth.
It nearly killed me and has caused permanent irreperable damage to me.

Watch out for toxicity EVERYONE.
Get pathology tests done regularly.
Get urine tests done to check for bleeding and any other problems.
Get thyroid and kidney function tests done. (I peed out a small rock within 3 months of commencing Topamax, the beginning of Kidney stones.)
See your doctor regularly.

Most of all, listen to your body. You are better off ditching Topamax for the inevitable cluster attack - let's face it, it will happen now or later, Topamax postpones the inevitable. There is nothing we can do to stop the CH attacks. Please - just remember a Cluster attack WILL NOT KILL YOU - but Topamax toxicity may have a good go at it.

Cheers, Ben.

Posted in Untitled on 08 Feb, 2011 - 1:53 am

HI Martine and Tom,
I was born in 1975, making me 35 years old now. I had my first headache investigation in 1979 when I was 4. I was a screaming child that no-one knew what to do with. I sought many treatments whilst growing up. It took until 1998 for me to first hear the term "Cluster Headache" 19 years after first presenting with the problem.
Times were different back then, nobody knew what was wrong, let alone a CH diagnosis. I have spent most of my life with Doctors and specialists saying "You are too young for CH". Tom proves otherwise and vindicates my position to some extent.

However, despite my childhood experiences, I take no personal satisfaction in seeing someone so young afflicted with CH.

It is a tragedy for me to see someone else so young affected by this disease.
It breaks my heart. If his life turns out anything like mine, it will not be nice.

It is great to see a diagnosis so early in Tom's life. At least he will grow up with support from family and knowledge of his condition, rather than having a cloud of suspicion and doubt hanging over his head, as I always did.

Medicine has moved along a lot since 1979, so have treatment options for CH.
There is also a lot of evidence to support the theory that Tom's CH will disappear at any stage. Through puberty, hormonal changes and growth spurts. CH can spontaneously disappear back from whence it came.

Fingers crossed this happens for Tom. It can take away your childhood having CH so young. For me it was a devastating blow to my personal development from which I have never fully recovered.

When I was this young Soluble Aspirin 900mg (Aspro Clear) was my abortive drug and my saviour. Maybe 600mg (2 tablets) would be more appropriate at his age and bodyweight.
It's worth a try.

I wish him well.

Cheers, Ben.

Posted in Untitled on 08 Feb, 2011 - 1:29 am

I am particularly concerned about the dosages of Imigran tablets you are using and the frequency with which you take them. 300mg per day WOW!!!!
I have extensive long-term experience with this drug. You may run into complications. I find any oral form of Imigran takes at least 25 -45 minutes to have any beneficial effects.
I would definitely not be popping pills 10 minutes apart.

I have overdosed on Imigran, it is not fun. These sorts of dosage levels may affect your blood test results and oragn functions as it did mine. I had dosages FAR in excess of what has been clinically trialled in humans before. 5 injections in 24 hours after a period of prolonged use turned me the colour of SHREK and put me in hospital with a "Toxicity syndrome..."

The FDT version may help you out, but I think you are a possible candidate for injections.

A quote from your post:

"I am happy to report that oral sumatripin works a treat for me! I start with 50mg and if no effect follow up with another 50mg 10minutes later. Can take up to 300 mg in a day so gives me a fair margin to work with."

I use 50mg Imigran FDT- SUMATRIPTAN FAST DISINTEGRATING TABLETS prescribed by my GP and available at most local pharmacies.

The datasheet:

Here's a picture of the box:

An article on the full stroy of Imigran:

An excerpt from that article:

After oral administration, sumatriptan is rapidly absorbed,
70% of maximum concentration occurring at 45 minutes. After a 100 mg dose the mean maximum plasma concentration is 54 ng/mL. Mean absolute oral bioavailability is 14%
partly due to pre-systemic metabolism and partly due to incomplete absorption. Oral
absorption of sumatriptan is not significantly affected by food.
Imigran FDT tablets and Imigran tablets have been established to be bioequivalent in the fasted state. In the fasted state, sumatriptan tmax was, on average, 10-15 minutes earlier for Imigran FDT relative to Imigran tablets. Imigran FDT after a high fat meal resulted in an average 12% increase in AUC(0-∝) and 15% increase in Cmax relative to Imigran FDT in the fasted state. AUC(0-2) was estimated to be an average of only 5% lower and tmax delayed by only 6.5 minutes for Imigran FDT in the fed, relative to the fasted state.
These variations are not considered to be of clinical significance.
END EXCERPT.................................................................................................................................

If you are leaving only a 10 minute interval between 50mg tablets, either you are not waiting long enough for the drug to adequately work - OR - you may need the 100mg version. Don't you get a rebound attack 4-6 hours after taking oral Sumatriptan?

It sounds to me like you need the injections. The RAH can prescribe and dispense the injections under the supervision of a PMU specialist at PBS rates ($5.60 for up to 12 injections for Health care card holders and pensioners).

Sorry I have to end it here, lost my post once, wrote it again, kept it short, now my head is starting to hurt...It's also 2am...
I will be writing my posts in Word from now on and cut and pasting them over here, I am tired of losing so much information!

Cheers, Ben.

Posted in Untitled on 06 Feb, 2011 - 10:35 pm

Hi Chrisjs,
Sorry to hear that Aspirin did not help you. Don't let this put you off recommending it's use to others. I will continue to advocate the use of Aspirin in the treatment of CH.
30 years of benefit for me from this drug should not be overlooked by other CH sufferers.
It has to work for someone else. With nearly 1000 members on this site, surely someone will gain benefit from 900mg SOLUBLE Aspirin.

I will keep banging on about it until I hear otherwise!
Maybe not banging, but talking, anyway...

Cheers, Ben.

Posted in Untitled on 06 Feb, 2011 - 10:26 pm

Hi to all,
After yesterday writing my essay on contraindications and the careful research of drugs, today I found myself flat on my back in hospital because of a new drug's side effects.

I did my research first.
I was put onto Cymbalta by my GP two weeks ago, I cross referenced all the available data on the drug and it's contraindications.
I note that the drug class - S.N.R.I's (of which Cymbalta is one) conflict with the Triptan drug group.
At the commencement of taking Cymbalta I contacted my specialist (A Professor of Clinical Pharmacology) for some advice on possible complications for me. I was mainly concerned with consuming Cymbalta and the concurrent use of Imigran (Sumatriptan) injections - this was listed by the respective drug manufacturer(s) as a contraindication.

My specialist gave me some sound advice specific to my individual case. Amongst this advice I was made aware of the small but unlikely possibility of "Serotonin Syndrome" occuring:

This morning, on my 14th day of taking Cymbalta, 2 hours after taking my 30mg dose, I awoke with the feeling that someone was standing on my chest.
I had not used any Triptans in 3-4 weeks or more. So no mix up on my part there, or any Doctor's part. No listed contraindication with any other medication I was taking either.
It was no-one's fault.

But what was wrong with my chest?
One month ago I had the full batch of Cardio tests done - Echo, Stress test, 24 hour ECG and other quick ECGs at the Cardio clinic. My heart was given the all clear. As it was again today.

So, this morning I got myself off to the hospital quick smart - chest pain was unbearable - crushing, I became slightly incoherent, agitated and confused with trouble stringing a sentence together (not like me at all...).
My blood pressure was elevated, but heart rate, oxygen levels and obs were all normal.
My left arm was tingly and the chest pain went all the way through to my back.
My muscles were all really stiff and I had the sudden onset of diarrhoea.
I felt as though I had already injected Imigran, the all to familiar feeling that my veins were tightening.
I was not at all well.

All blood tests were OK. I was given an aspirin 100mg and "anginen?" an anti angina (heart) medication to dissolve under the tongue as a precaution. It is a vasodilator... Great I thought. Here comes a CH...
Many hours later I still have a thumping headache, bordering on cluster proportions.

The chest pain eventually went away and I was discharged. My presentation at A&E was put down to a form of anxiety or panic attack bought on by the increasing plasma concentrations of Cymbalta. I have been advised to cease taking the drug.
I had been on a constant 30mg for 14 days, but it's effects were cumulative and I reached some sort of "Toxicity" or tipping point and subsequently experienced this chest complaint.

Quote from wiki:

Spectrum concept

A postulated ‘spectrum concept’ of serotonin toxicity emphasises the role that progressively increasing serotonin levels play in mediating the clinical picture as side effects merge into toxicity. The dose-effect relationship is the term used to describe the effects of progressive elevation of serotonin, either by raising the dose of one drug, or combining it with another serotonergic drug which may produce large elevations in serotonin levels.

End Quote.

This sounds like what happened to me. I speculate that the compounding nature of the S.N.R.I. itself caused this variation on my condition - and the chest pain.
I am ceasing the use of Cymbalta as of now. I am not looking forward to the withdrawal symptoms...

Looks like it's back to the drawing board for me and the docs...

I wrote this account on the site because I wanted all the patients who read this to know:

Everyone involved can get it right (Doctors, manufacturers and patients). All due diligence can be carried out and all due care taken, but still - harm can be caused by prescription pad.

All prescription drugs are poisons. I hope you can all acknowledge this and factor it into your possibly lengthy battles with CH.

Hope I have helped someone.

Cheers, Ben.

Posted in Untitled on 05 Feb, 2011 - 8:33 am

Hi Everyone,
I have noticed that some medications are being listed as duplications on this site. Example: Methysergide - Deseril (same drug). The active ingredient of a drug may be confused or substituted with manufacturer's generic or brand names for the same medications. This may lead to confusion amongst newly diagnosed or less experienced patients. Possibly even leading a patient to double up on the same drug, or take two drugs from the same drug family simultaneously. This is a serious problem.

I have avoided very serious life threatening contraindications on no less than 3 or 4 occassions by carrying out my own dilligent research BEFORE taking the new medication I have been prescribed. On one occassion I was not so lucky, had a serious contraindication and nearly died as a result...

In my experience, a GP can prescribe a drug (example Imigran - Sumatriptan) then at a later time a specialist (Example a Neurologist) can co-prescribe an ergot alkaloid (like Cafergot - ergotamine) "in-house" from a hospital pharmacy without first closely consulting with the referring GP, resulting in a potential contraindication with serious potentially very dangerous or even life threatening side effects.

Often channels of communication within the health system are broken down, or a simple miscommunication occurs. The patient is often left with multiple medications from multiple sources, confused as to which medications to take and when they should take them.
My advice to any patient that has been given multiple medications and has any confusion or doubt about whether they should take them or not, is to get your GP and specialist(s) talking to eachother ON THE PHONE and discuss your medication and any potential for contraindications on an individual case by case basis. A simple phone call in this case may save your life...

Written reports from hospital specialists can take considerable time to be written, mailed to your GP, then a subsequent appointment made with your GP. It may be a couple of weeks or more before you can meet with your GP to be made aware of any potential conflict between prescribing doctors and your medications themselves. During this time frame patients may experience contraindications with serious side effects. When investigating what medication you have been prescribed or are willing to try, accurate information is of the highest importance to patients seeking Pharmacological solutions in CH management.

Pharmaceutical datasheets are produced by manufacturers for the knowledge and benefit of patients and prescribers. Your local or Hospital Pharmacist may print one out for you and talk with you about the datasheet at the time of receiving your new medication.

Manufacturer's drug Data sheets are also available online as PDF documents.
You can either google the drug in question by brand name or active ingredient.
Searching Google with "PDF" or "Datasheet" together with the drug name is usually an effective way to locate the consumer information datasheet on your specific drug.

I have found an excellent Australian based resource for locating Drug Maufacturer's data sheets. The Australian Pharmaceutical Benefits Scheme (PBS) website:

How to use the site:

Browse the site (A-Z listing) for your drug name or active ingredient; example "V" for Verapamil:

Scroll down until you find the correct listing for the drug by it's name.
Click on "General Schedule".
The drug name will be listed in BLOCK LETTERS with a "view all" button next to it.
Click on "View all". You will be directed to a page for the chosen drug which lists specific information on the drug such as: availability, various dosages, delivery methods and costs.

Most importantly the small ADOBE PDF icon on the right that says "CMI" or Consumer Medical Information. The "PI" or "product information" PDF icon may also be useful in researching your chosen drug. This will give you the patient access to the drug manufacturer's datasheet and any other relevant informaton. You can save or print this information for yourself.

Manufacturer's PDF Datasheets are a powerful and informative tool for all CH patients.

You should not act alone in reading this information. Always consult with GPs and specialists. Having access to this information is priceless and may even save your life.
Dilligent research is always required when you are a patient being treated, or seeking treatment for CH.

Hope this helps solve some confusion for some of you out there.

Cheers, Ben.

Posted in Untitled on 04 Feb, 2011 - 1:16 am

Silent planet,
Talking to my specialist the other day. He had been consulting with his colleagues in Neurology about Trigeminal or occipital nerve surgery as an option for me. Apparently Neuros have put the scalpel away for the time being. I was informed of the availability of radiological procedures as an alternative to surgery, Still destructive, still irreversible, but less invasive and less risk - apparently. Nuclear medicine and Neurology just may have new alternatives to hacking away at parts of your brain!

There is still talk of an electronic nerve stimulator being installed in my scalp, but this talk comes and goes. Every few months they find evidence to support the idea, then a few months later that evidence is refuted or disproven by the next available clinical study results.

Who knows what will eventuate?

Good luck with it.

Cheers, Ben.

Posted in Untitled on 04 Feb, 2011 - 1:04 am

Hi people,
I had Botox injected in about 20 different positions around my right eye, eyebrow and face area. The effects on CH (if any) were supposed to be instantaneous. I had many full on attacks in the next few days leading on into the endless cluster/migraine cycle that is my life...

The short story is: There is some evidence to show that Botox injection will result in temporary local muscle and tissue paralysis around the injected area. It is supposed to halt some of the processes involved in localised vasodilation from happening in the first place. Most clinical evidence was gathered from use in Migraine patients. I believe I was the 20th person worldwide to be trialled for the use of Botox in cluster headache.

It did not work. Another one down, another box ticked.

I looked like I had been attacked by a pack of mosquitos and had that
"Rabbit in the headlights" look that so many TV news presenters have these days, but only on my right side - hilarious I know.
My right eyebrow would not move for 6 months.

Happy, happy, joy, joy...

Botox - an expensive waste of time.

Cheers, Ben.

Posted in Untitled on 04 Feb, 2011 - 12:31 am

Hi everyone,

A few people on here are heavily advocating the use of O2. I am glad it works for some of you. I wish it worked for all of us. It does not work for me. I acknowledge that it is a tried, tested and clinically proven abortive drug and a vital frontline tool in the treatment of CH.
However, I note that some people mention hyperventilation, or hanging out of windows or putting their heads into car air-conditioners. I understand the desperation that makes people do this all too well. Whatever works for you...

I have suffered since 1979, with 4-6 attacks per day since 1990, with 1x9 month break in 1996, no significant break since. I am a severe, chronic and intractable case. I do not respond to most drugs. I understand the pathalogical need to try ANYTHING!!!!

There seems to be a general idea circulating that gaining access to air is a form of substitute for O2 treatment. Whilst even I find it helpful to have a stream of fresh air flowing around me, no-one is going to get enough O2 from the atmosphere alone to constitute an O2 "treatment". The air we breathe contains 20% Oxygen at best. This is no real atmospheric substitute for an O2 cylinder running 15L/min at 100% concentration through the right mask.

Composition of air. See chart:

I have noticed that a lot of people do not have a window open at night whilst sleeping - for security or other reasons. I have a theory about cumulative CO2 buildup in small bedrooms at night. I used to sleep in a closed room at night occupied by myself and one other person. I used to wake up with force 10 Cluster attacks, sometimes 2-3 times per night and inject Imigran. I noticed the room was stuffy and closed from all the exhaled, used air trapped in there. I kicked out the other occupant, opened up the windows and ran a pedestal fan by my window. Much more air flow and less attacks. I have been doing this for over 10 years now. It is a small efficiency gain in the management of CH, but all gains can be accumulative and beneficial.

Here is some evidence to support my theory/claim. I have discussed it with spedcialists and the general concensus seems to be "If it helps you then do it."
There seems to be agreeance amongst Doctors and specialists that elevated CO2 plasma concentrations MAY play a small part in triggering a vascular event in someone who is CH prone (in the middle of a phase).

For some of you who still work in air conditioned enclosed office spaces:
Excerpts from a wiki article on CO2:

Carbon dioxide differential above outdoor levels at steady state conditions (when the occupancy and ventilation system operation are sufficiently long that CO2 concentration has stabilized) are sometimes used to estimate ventilation rates per person. CO2 is considered to be a surrogate for human bio-effluents and may correlate with other indoor pollutants. Higher CO2 concentrations are associated with occupant health, comfort and performance degradation. ASHRAE Standard 62.1–2007 ventilation rates may result in indoor levels up to 2,100 ppm above ambient outdoor conditions. Thus if the outdoor ambient is 400 ppm, indoor levels may reach 2,500 ppm with ventilation rates that meet this industry consensus standard. Levels in poorly ventilated spaces can be found even higher than this (range of 3,000 or 4,000). [Mendell and Shendell references]

Carbon dioxide is one of the mediators of local autoregulation of blood supply. If its levels are high, the capillaries expand to allow a greater blood flow to that tissue.

End excerpt...........................................................................................................................

We all know that vasodilation is at the core of the problem with regard to triggering CH.
Does anyone think there is any merit in this line of enquiry?
Or is it just another placebo effect?
It can't hurt to ask...Opinions anyone?

The blood CO2 test:

Cheers, Ben.

Posted in Untitled on 02 Feb, 2011 - 4:43 pm

Another possibility as posted by Barry:

Posted in Untitled on 02 Feb, 2011 - 2:27 pm

Seriously... Anyone???

Ever heard of them???


Posted in Untitled on 02 Feb, 2011 - 2:24 pm

I forgot to mention that a Head CT does not include a sinus CT. I had a referral to an Ear, Nose and Throat (ENT) clinic where a routine sinus CT was commissioned for me as an investigative avenue into the cause of my Headaches. Purely routine, just to rule out any possible abnormalities. Everyone thought it would come back clear.

However, it showed that I had a "Mucus retention cyst" in my sinus in an area called the eustachian tube:
This caused sinus headaches and tearing in one eye, which only served to mask and further complicate my long time CH diagnosis and treatment...
The cyst became painful, infected and blocked my right sinus passages completely. It was reduced in size by a course of antibiotics and the use of Rhinocort.

Rhinocort - an over the counter nasal spray mave offer you some relief from sinus and tearing symptoms. It is low dosage Cortesone (a steroid) in liquid form. Whilst it has zero effect on headaches themselves, it may offer your condition some symptomatic relief.

My guess is that you are at the point where you are willing to try any options?

Once again, check with a pharmacist before using rhinocort, especially if you alreadty have sinus bleeding or are already on Cortesone based treatments (Prednisolone etc.).

Good luck with it.

Cheers, Ben.

Posted in Untitled on 01 Feb, 2011 - 5:53 pm

Hi everyone,
I have recommended to a few people on here already to try Aspirin for CH.
It may sound "Weak" or "Run of the mill" and is often dismissed or overlooked by many doctors, specialists and people suffering from CH, simply because it is available on a supermarket shelf. It may seem counter-intuitive to seek remedy at the supermarket after sitting through a Neurology clinic... again... But I say give Aspirin a go.

As a sufferer for 30+ year I still use and recommend 900mg of SOLUBE "ASPRO CLEAR" at the onset of an attack. It can work quite well as an abortive drug. Not only do I find this drug effective, inexpensive and easy to obtain, many other CH sufferers gain benefit from the use of Soluble aspirin. I have had some success out on the road with "Disprin direct chewables" tablets that can be purchased from a service station for around $2 for 2 or 4 tablets.

Not to be confused with solid Aspirin pills or ones that "fall apart" in a glass of water. They must fizz (contain sodium bicarbonate) and dissolve into a solution, not a suspension.

Before I am summarily dismissed by the CH community - try it first and see if it works for you.
I have completed approximately 50 drug trials. Everthing known to man and some that previously weren't... I still use opiates and triptans (Imigran FDT and s/c Injections) for bad attacks, but why crack a walnut with a sledgehammer? If Aspirin will work then I use it first, saving the expensive injections for later, or more intense attacks.

I still say give Aspirin a go, it might just work....

It is all too quickly dismissed.

End of rant, sorry people.

As usual, seek medical advice, Aspirin is contraindicated with many other medications.
Talk to your Doctor first.

Cheers, Ben.

Posted in Untitled on 01 Feb, 2011 - 5:22 pm

Hi Overthehedge,
Try 900mg of "aspro clear" from the supermarket, if you are able to take aspirin. I have had CH for 30 years and this soluble Aspirin can be very effective, much more so than paracetamol or opiods (which won't touch CH) or NSAIDs like Nurofen.

I am not a Doctor, but your symptoms sound vague in relation to CH to me. I cannot attempt to accurately deduce what is going on from your reported symptoms. This is a job for the specialists.
It just doesn't seem to fit the bill for CH. It doesn't sound right to me - but I would not rule out CH either. Your body can't read the textbooks - every individual case should be assessed on it's own merits and presenting or reported symptoms.

I have had many neck problems for years - but there is NO correlation between my neck pain and my particular CH condition. 30 years of CH and 10 years (on and off) of physio proves this.

It sounds to me more like SUNCTS possibly or another type of headache:

You need to go into more detail about the symptoms at onset of an attack, severity, duration and frequency before anyone will suggest that you may have CH.

There is a Headache specialist in the Royal Adelaide Hospital's - Pain Management Unit.
One of the best. He can investigate and figure out what type of headache you have.
It takes a long time on the waiting list to get in there, for public patients like me 15-18 months.

This may not be helpful or encouraging, but I saw a list once published by "The Migraine Society?" (I think) which stated that there were over 1000 different types of headache. But with a good specialist, you should be able to narrow it down fairly quickly. Don't worry, it's not like finding a needle in a haystack. There are diagnostic procedures to help narrow it down.

It just doesn't sound like CH to me.

If the Blood Pressure is high, you may be able to kill two birds with one stone and try Atenolol, Diltiazem or Verapamil. Some lower blood pressure and all are used in some forms of headache treatment.

Remember, seek appropriate medical advice. I am not a Doctor.

I hope this helps you. Be careful driving mate!!!

Cheers, Ben.

Posted in Untitled on 31 Jan, 2011 - 8:56 pm

Hi Graeme,
Alcohol is bad news for some patient's CH fullstop. During my 2007 oxygen trial, we actually used beer as a guaranteed trigger for CH. I sat in a hospital ward for 2 days drinking beer until I had an attack which was subsequently treated with 15L per minute of 99% oxygen. The oxygen treatment failed. All we proved that day is that alcohol is a guaranteed trigger for me, whilst in a CH phase.

Strangely enough, some drinks are worse than others. Beer is real bad, but some straight spirits do not trigger anything. Go figure...

That was the last beer I ever had. I no longer drink.
As soon as I was diagnosed in 1998, I gave up drinking permanently.
4-6 attacks a day are not worth it just for a beer or two. It is hard to justify whacking in a $100 Imigran injection when I know my attack was preventable in the first place.

I recently had high blood pressure and heart rythm problems (left over complications from 50 odd drug trials in 30 years...mainly Topamax and verapamil complications...)
I was put on Atenolol and have experienced only minor attacks since. Maybe??? just maybe this beta-blocker for the heart can offer help.
It is sometimes used in Migraine treatment and may offer help to CH sufferers.

Hope I have helped.

Cheers, Ben.

Posted in Untitled on 31 Jan, 2011 - 8:37 pm

Something my Headache specialist and I strongly agree on. 900mg of "Aspro Clear" at the onset of an attack can be very effective. It must be a SOLUBLE ASPIRIN (as in fizzing dissolvable in water, to create a SOLUTION not a SUSPENSION as some other forms of non-soluble Aspirin do) - I suggest Aspro Clear from the supermarket, take 3 dissolved in a half a glass of water as soon as you feel an attack coming on. The sooner the better.

I have all the opiods you can get and the triptans, including Imigran imjections.
Imigran injection always works for me, but I will always go for the aspirin first - it is cheaper, easily obtainable, less damaging in the long term and can be as effective as triptans depending on the strength of the attack.
I have been using it for 30 years without a problem. I find it far more effective as an abortive medication than any other over the counter or opiod medication.

Aspro Clear is still one of the most effective treatment options available to me.
It is too often overlooked by GPs and Neurologists. I think it is dismissed as a weak or passive medication, because it is available on the shelf in any supermarket. The Doctors can't rule it out and say it doesn't work, because they don't fully understand the mechanisms behind Cluster Headache yet.

No-one fully understands how or why Cluster Headaches start. There have been some observations made about the pyhsiological changes that take place at the onset of an attack.

During discussions with my specialist I gained a limited understanding of some of the things going on in the brain during an attack. My limited understanding from my discussions is that there is a cone shaped piece of bone behind the eyeball. It has a hole in the centre through which your optic nerve runs. Apparently, usings scans and measurements, doctors were able to make observations along the lines that blood flow enters this area between the eyeball and the cone shaped bone and remains trapped there. More blood continues to enter the space between the cone shaped bone and the eyeball, but does not adequately flow out from this space, building up pressure. From my understanding, increased blood pressure around the eyeball results in the distention of tissues around the brain, pressure on nerves and subsequent head pain.

No-one can say for sure why this process happens and no-one can yet offer an adequate solution.
The blood thinning action and quick delivery of 900mg of Aspirin MAY have some beneficial effects in getting this blood pressure build up to drain away from behind the eyeball. It doesn't always work.

Be careful using Aspirin, it is contraindicated with many other drugs. There are many other heart, blood pressure, NSAIDs (Nurofen, Voltaren etc.), Benzodiazipines and other medications that conflict with the use of Aspirin. Make sure you do your research in relation to contraindications with drugs you may already be using. Long term use of high concentrations of Aspirin can cause gastrointestinal irritation or bleeding.

Consult with your GP and specialist on the use of Aspirin. Please, don't let them be dismissive of the drug. It can be very effective and is almost always overlooked as a CH treatment option. The worst that can happen is that you try it and it does not work.

If you are truly suffering bad CH then I suspect you are willing to try anything - most CH sufferers will. Give "Aspro Clear" 900mg a go, you never know it might help.

Remember, seek advice before trying it, I am not a Doctor!

Cheers, Ben.

Posted in Untitled on 29 Jan, 2011 - 3:56 pm

Hi Melanie,
One important thing to remember with CH is that your body can't read text books. You may fit several criteria of CH whilst others are absent. No two individual cases seem to be alike. Research on the internet will only get you so far. There are no confirmatory tests for Cluster Headache. We cannot yet see, measure or quantify a cluster headache.
It is not a text book disease and may have many variations in presentation.

In 30 years of CH I have never had a droopy eye either, but I get an "aura", an anomaly almost exclusively associated with Migraine alone. So I don't exactly fit the criteria either. Your headaches may not have yet reached the level of intensity that denotes the "Hot poker in the eye" type feeling. Let's hope they don't.

In my experience, I have had nearly all of the text book presentations at one time or another, sometimes described as "Classic text book CH" right through to vague interpretations of Migraine or other organic headaches. My headaches constantly change and evolve their patterns, triggers, severity, duration and reponsiveness to pharmaceuticals. My many varied diagnoses and treatment regimes over the years reflect this.

To me it looks like you may unfortunately have CH. But you need a specialist diagnosis. GPs are GENERAL practitioners and despite their best intentions they are not specifically trained to identify and treat CH. Upon expressing my frustration with GPs, on one occasion a specialist once put it to me that a GP SHOULD NOT have specialised knowledge of CH or any other rare condition for that matter.

In defence of GPs, referral systems are put in place to get you (the patient) in front of a specialist who is extensively trained to deal with specific areas of medicine. A GP would be neglecting the very nature of General Practice itself if they had their head inside every medical text book, indulging in educating themselves in every new specialist area. Their general patients would suffer for it. So would their general practice.
That's why we have referrals and specialists.

I hope you have had some basic tests to rule out any other possible causes.
Your Doctor should take basic precautions and send you for a CT scan of your head to first rule in or out any anatomical anamolies like a tumor or aneurism.
Pathology tests can help to rule out some other possible causes, like organic types of headache or meningitis etc.

I don't like to speculate. My advice would be to seek referral into a Hospital system, perhaps to a Neurologist or a Pain Management Unit. Here you will find the experienced specialist care you may need.
If things get real bad, you can jump the waiting list by presenting at Accident and Emergency in a public hospital. You should get access to a Neurologist or other specialist care within 12-24 hours if you are patient and persistent.

Remember - I am not a Doctor, seek medical advice!!!!

I hope I have helped.

Cheers, Ben.

Posted in Untitled on 29 Jan, 2011 - 2:41 pm

Hi everyone,
I hear some interesting new developments may be on the horizon with regard to CGRP receptor antagonists soon being made available in treating and managing CH conditions.

From my limited and uneducated understanding - they offer the possibility of a preventive drug prohibiting vasodilation taken daily, without the rebound headache effects associated with abortive triptans. I may be wrong - I have limited knowledge in this area (I am not a specialist...)

I am not aware that they are past clinical trial stage or availiable/approved for use in Australia yet.
Let's hope they work, are approved for use and that they get put on the PBS!

Has anyone out there been given access to a CGRP receptor antagonist yet?

If so, would anyone like to share their thoughts/experiences on the subject?

Some basic info:

Cheers, Ben.

Posted in Untitled on 25 Jan, 2011 - 10:41 am

Hi Aida,
I have had trouble with this one myself. I am not an expert on this. When I did my Oxygen trial for CH, we were after 15L per minute at 100% concentration. To achieve this, I remember talk amongst Doctors and nursing staff about the use of a "Non-rebreather" or "Non-recirculating" Oxygen mask. One that does not vent to atmosphere.
One of these could not be located at short notice in time for my trial.
A conventional oxygen mask was modified for the job (Block up external holes in it) so that high Oxygen concentration could be achieved. I also had to use the mask in an unconventional manner.

If you are hooking up to an oxygen bottle for CH, then in my experience, for Oxygen to be effective in CH treatment you will need the highest concentration of Oxygen that can be achieved from the equipment that you have. From what I understand a common Oxygen mask found in most wards is inadequate for consistent delivery of these high concentrations of Oxygen required for CH. We had to find a special "non-rebreathing" mask for the job.

A quote from Wikipedia on the design of a "Non-rebreather" mask:

"Exhaled air is directed through a one-way valve in the mask, which prevents the inhalation of room air and the re-inhalation of exhaled air. The valve, along with a sufficient seal around the patient's nose and mouth, allows for the administration of high concentrations of oxygen, 60–90% O2."

I have looked around online and can only find general information about the mask.
Sorry, I cannot locate one for you, I am sure a supplier of Medical consumables will be able to point you in the right direction.
I did find one supplier in Australia, but unfortunately the mask does not come with the medical advice or assistance you may need:

I just hope you find the right mask for the job.

Another tip I heard is "Canned Oxygen" an aerosol can of Oxygen for emegencies available for climbers at the base of Mt. Everest (and other places I presume). I am unsure of the delivery concentrations and capacity of a small can, but it could get someone out of trouble. I hear it is available in other countries. Just a rumour...

Remember, I am not an expert. Seek specialist medical advice.
Good luck with it.

Cheers, Ben.

Posted in Untitled on 25 Jan, 2011 - 12:17 am

Hi everyone,
My name is Ben. I was born in 1975 and had my first investigation into acute head pain in 1979 at age 4. Doctors back in 1979 speculated that I had an allergy to artificial flavourings or colourings. Some of my earliest childhood memories are of screaming in pain as my Mother gave me a blue plastic cup with "Aspro Clear" dissolving into water. I endured recurring head pain throughout my childhood, consulting many GPs over the years, with no success.
My condition and I were greeted largely with suspicion, disbelief and misunderstanding by the medical profession.

I was prescribed my first box of Panadeine forte at age 13. In 1989 I was hospitalised with severe head pain and given a bottle of the now defunct "Lingraine" an ergot-based medication that dissolves under the tongue. I was not yet diagnosed.
This medication did not work. In the meantime the headaches continued, undiagnosed and untreated. They dramatically affected my early childhood development and my personal life as I moved into my teenage years.

This unexplained pain caused major interruption to my education. Most people - Parents, teachers, Doctors - anyone in a position of authority, had no understanding of what I was experiencing, so my condition was treated with complete disbelief by all concerned. In the absence of an explanation, many trips to school sick rooms and early absences from school raised doubts over the legitimacy of my condition and only served to earn me a reputation as a "Dodger" and a Liar. I was treated like a hypochondriac and a second class person.

My high school years were complicated by many things, my parent's divorce, moving house many times, family court proceedings and custody battles, etc, etc. As this served as a major distraction, my headaches continued unabated with little or no attention from me or anyone else.

I continued on in silence for many years. I was heavily put off GPs and hospitals due to their vague, often cynical and dismissive approaches to my condition. I left school, held down jobs sporadically and by this stage kept my condition largely secret. Few people close to me knew what I was experiencing.
The feeling amongst my family and close friends was that I should just get over my "Headaches" and the usual comments, questions and suggestions ensued.

"Why don't you go back to the Doctor?"
"Why don't you just take something?"
"You need to stress less..."
"Grow a backbone and tough it out, it's just a headache..."
"I get headaches all the time, I do this..."
"Have you tried?..."
"Get over it, we all go through pain..."
"How can a "Headache" possibly be so bad?"

Even my nearest and dearest were becoming dismissive of my situation. After so many years of it, some people thought it was a ploy, or some other attempt to exempt myself from the responsibilities of going out into the world and making a life for myself. I lost many friends and opportunities due to my headaches and others scepticism surrounding them. My Mother was the only person who witnessed the worst headaches when I was very young, hence she was the only person who truly believed what I was experiencing. Still, no one understood what I was experiencing - least of all I.

There was much speculation on the part of doctors. Migraine was mentioned many times and I received Migraine medications for this.
In 1998 I was admitted to hospital by a GP for a CT scan of my head to rule in or out any anatomical anomalies, aneurisms or any other physical or visible causes. This was to be the first of many scans. It came back clear, nothing visibly wrong with my brain.

Whilst in admission at the hospital, I was diagnosed by a hospital neurologist as having Cluster Headache in 1998 - 19 years after first presenting for treatment. This was the first time I had ever heard the term "Cluster Headache".
I was given a short course of High dosage Prednisolone (Cortesone) and put onto Sandomigran (Pizotifen). The Prednisolone knocked out the headaches temporarily. Sandomigran failed. This was the first of many failed drug trials.

In early 1998, I was the victim of a random assault on the roadside on the way to a job interview. I was hit in the head several times and left with bruising and concussion. A few months after this the Cluster Headaches became much worse. I attempted to manage up to 6 attacks per day with 900mg of Aspro Clear
(A soluble form of Aspirin that remains to this day an effective part of my drug arsenal).
I managed residual head pain and Migraine between cluster attacks with Panadeine Forte. I also suffer from Migraine.

This began a long journey through nearly every medical discipline in order to rule any causes in or out.

I went through 2 Neurology clinics - for many drug trials - SSRIs, Methysergide, Verapamil, triptylines, ergots, indocid, Lithium, Cafergot etc.
Just to name a few...
Neurology did a battery of tests including head, neck and back CT and MRI scans, pathology and nerve conduction studies.
I went through Physiotherapy for over 4 years on and off to help with my neck (as a possible headache cause.)
I went through Ear, Nose and Throat clinic to rule out sinus problems - yet more CTs
I went through Cardiology to rule out any links with vascular disease.
I went through Psychology and Psychiatry to rule out any cognitive dysfunction.
I went through Optometry to rule out pressure in my eyeball.
I had so much Radiology; I nearly glow in the dark.
I went through nearly every test that Western Medicine could throw at me in the last 13 years.
I completed nearly 50 drug trials. You name it, I have taken it.

Finally, in about 2006 I ended up in the Pain Management Unit at the Royal Adelaide Hospital.
I was made aware of the impending arrival of a specialist in the area of Cluster Headache who might be able to help.
In 2007 Professor Paul Rolan, a clinical pharmacologist returned to Adelaide from the U.K. where he had been heavily involved in the treatment of Cluster Headache and the development of drugs to assist in the management of Cluster Headaches.
I cannot speak highly enough of Pr. Rolan and his assistance offered to me in managing my Cluster Headache condition.

Check him out, Google his work!

Although I acknowledge Peter Goadsby’s contributions in the area of Cluster Headache research, he seems to me to be more the public face of Cluster Headache research in Australia. In my opinion, Professor Rolan has, on the other hand - been too busy treating Cluster Headache patients in a frontline clinical environment to have become as publicly well known. He does pop up on the TV from time to time…
His qualifications, experience and achievements are vast. His knowledge on Cluster Headache is second to none. As a patient of his I will acknowledge my bias upfront - the humble man has saved my life more than once.

Under Pr. Rolan's supervision I was given previously unseen, unprecedented access to drug trials and treatment options.
At the P.M.U. we thoroughly trialled oxygen and went back over some of the previous trials that Neurology departments had somewhat dubiously conducted.
There are far too many drugs and trials for me to remember or list here. Suffice to say, we have tried everything known to man (and a few that previously weren't).
I am left with the diagnosis of chronic, severe, intractable Cluster Headache. This means that I do not respond to preventive medication.
I get no real break from it. My only remaining treatment options are destructive surgery - severing nerves in the brain.
As a guitarist of some merit, I am unwilling to attempt this risky and experimental brain surgery.

I had a 9 month break from Cluster Headache in 1996 and I am currently on a record equalling break, approx 9 months. The rest of the time – it is FULL ON. I am not here to seek sympathy.
I am not here to whinge. I have come here to help.

I live with Cluster Headache around 85% of the time, up to 6 attacks per day.
In my current drug arsenals are:

The trusty 900mg soluble aspirin (Aspro Clear)
Panadeine Forte
Sumitriptan 50 mg FDT (Fast dispersion tablets)
Sumitriptan 6mg s/c injections
Cymbalta (just started today)

Access to Imigran has been a life saver. I do respond to some abortive medications - like Imigran injections.
Most of these listed medications are for co-existing conditions (some caused my headache, some not) and were not prescribed by Pr. Rolan.
The RAH gives me access to Imigran injections through the hospital system - yes this can be done.
I pay $5.40 (PBS rate) for up to 6 twin pack Imigran injectors through the hospital system.

Most importantly, Pr. Rolan's vigilant professionalism left no stone unturned in my treatment options. I honestly think the man lies awake at night thinking of ways to make my life better. Before meeting him I was looking at the possibility of suicide. Not entirely due to mental instability, but as a means of escape from the unrelenting 30 years of pain. I had even obtained a copy of "The peaceful pill" handbook.

Pr. Rolan saved my life.

After so many years, here was a man who not only believed that I had Cluster Headache. He witnessed it and treated it.
My life is still very painful, but it has become bearable. I now have direction and a sense of purpose.
Finding the right specialist is of the highest importance to Cluster Headache sufferers. You can spend 20 years wandering around the medical system if your doctor cannot identify and diagnose Cluster Headache. GPs are not trained in the diagnoses or treatment of Cluster Headache, it is a specialist area.
Always seek specialist advice if you think you might have Cluster Headache. GPs alone do not have the resources to manage this condition.

If you have been diagnosed or think you may have Cluster Headache, you need treatment and a shot of hope and real-world optimism.
There are people out there who care, understand the condition and can help you to manage and live with it. There are promising new drugs on the horizon.
There is no cure, but you can win your life back again. I am living proof.

I hope to become an active member of this forum. With 30 years of experience I feel I may have something to offer to those in need.

Cheers, Ben.