Sign in

Showing all posts by "Ben"

Home  >  Forums  >  Showing all posts by "Ben"

Posted in Leaving the site - Cheers, Ben. on 08 Jul, 2013 - 2:19 am

Hi to all,

I am posting here to let site users know that I am leaving the site.

I've left before, but this time I will not be back. Things are busy elsewhere on the CH front for me and I am looking at again moving back into helping with research through the appropriate channels, in public teaching hospitals and their attached Universities.

Fingers crossed I can eventually become well enough to earn an ethical living and help bring about some relief in the process, no matter what the condition. I am trained in Engineering Sciences of sorts and the skills are to some degree, transportable. I would like to get behind a microscope, or into an official research position where I can do some good.

I will also be participating in any new local CH research as a patient, when it begins. I am going where my time can be put to most productive use for the cause.

In preparation, I have spent the last couple of weeks doing an update of a few tabs on the left, so people can locate current specialists, medications and clear hurdles in accessing them, here and now, in Australia.

We've re-written the home page, it's welcome and meta-tags. We are now right up the top of the list on google search and been linked into Wikipedia, where we belong. Second only to Wiki and the Mayo Clinic; testament to Roger's IT skill and prowess!

I honestly believe this is the best and a must "go-to" resource for Cluster Headache patients in Australia. People should be able to find this site and CH relief a lot easier with the new modifications now in place.

It's been a pleasure and most rewarding to help so many and to be helped by so many here.

I will continue to work with Professor Paul Rolan, Pete "Batch" Batcheller, and my CH email friends and contacts. I have a new email address and will be in contact with the productive and constructive few who wish to continue to communicate and work with me on all matters CH. I will be relinquishing both my Admin and Moderators positions here.

It's been a pleasure working briefly with Roger in Admin, always the Gentleman and quick to reply. Without Roger's vision, forethought and ongoing dedication, so many lives will not have improved as dramatically as they have.

If my PM inbox is any indication, many diagnoses were reached quickly and many lives restored to normality. Thanks to all the newbies who went out of their way to tell me if and how I helped, or how I didn't.

My PM box is now closed.
Emails welcome at my new address.
Thanks to everyone for their help, encouragement and input.

I am pain free and have Batch and the Anti-Inflammatory D3 regimen to thank for it.

With persistence, CH can be beaten.
With help from this site, life can be turned around, made bearable and very much worth living. This site and the posts contained in it are proof of that statement.

I wish only pain free days to all.

Over and out.

Cheers, Ben.


Posted in Batch's anti-inflammatory regimen for CH on 06 Jul, 2013 - 3:37 pm

Ho to all,

I'm signing off here on my experiences with the regimen, it works for me.
I put my money where my mouth is on the regimen and it has attracted (for the most part) the right kind of interest. I hope this shows publicly, for one CHer at least (me), how tweaking and persistence can pay off.

There is some news and research progress in the works, but it may take some time before I can report any outcome. The rest of the hard work will continue elsewhere, through the appropriate channels.
Rest assured, the world's best are working on it.

The regimen recipe stands as is here, on Batch's thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4

For the latest updates, always check with Batch's thread.
I will keep the site updated of any Australian developments in the pipeline.

Anyone else should feel free to post their experiences or questions on the regimen here, or start your own thread, whatever you like.

I'm off to enjoy my "Pain free" status, for the first time in my life.icon

Pain free days to all.

Cheers, Ben.


Posted in Cefaly - Using Tens technology on 04 Jul, 2013 - 6:26 pm

Excellent news Maurs,

Be sure to run it by your GP or health care professional and stay supervised.
Just had another success for the vitamin D regimen on the phone! Cool, indeed.

Cheers, Ben.

(Hey Peter - idea: change your screen resolution, then my replies will fit on one screen!
Or go for a multi-monitor setup and read them laterally!
You don't have to read them at all!!!
9 pages from first inquiry to GP's door, still beats the statistical average 5-7 years time lapse we are all still facing from CH presentation, to correct diagnosis and treatment.
That makes this a pretty valid tool for CHers, indeed.
How it is used is what makes it effective.
I wish I had this, rather than a quarter Century of uninformed "suffering" - and that's what it was - suffering...) icon


Posted in Cefaly - Using Tens technology on 04 Jul, 2013 - 11:17 am

Maurs99,

If you don't mind me asking, what's your blood pressure medication?
Do you have to avoid magnesium in foods as well, due to your medication?

I only ask, as we can add the name of your BP medication to the list of contraindications, and/or interactions for the regimen. I know of a few BP medications affected by Potassium, but I'm not clued up on Magnesium/BP conflicts and we may need to modify the regimen literature to show this.
It would be a great help to many to know the name of this drug, so we can cross-check it in research! It's invaluable information.

Still, that shouldn't stop you having a 25(OH)D serum level test to check Vitamin D levels. We use Vitamin D3 in the regimen to attempt to treat chronic disease - a very different approach to normal use.

Most GPs will use Vitamin D3 within RDI (Recommended Daily Intake) to address deficiencies. D3 deficiencies have been linked to many Headache disorders in many studies I have been recently reading. Surely it can do no harm to supplement D3 within normal range. There's nothing stopping you checking D3 level (25(OH)D) and supplementing. D3 can also help control your blood pressure, in some cases, getting people off BP medication - depends on your particular condition, but I am no Doctor...

One cannot make vitamin D through the skin from the sun for about 5 months of the year around this time of year (Vitamin D winter), as there is very little UVB light available, even near the equator, none if you live in Southern states at 35 degrees latitude or more.

I got my 25(OH)D level back yesterday, I take 15,000IU per day and my level is 146nmol/l, which is within acceptable ranges in Australia 60-160nmol/l, and I'm CH free. Magnesium is not responsible for the preventive effect of the regimen, it is added in there as a precaution, as high D3 dosing can make one Magnesium deficient
I achieved relief largely without magnesium, as it is difficult to tolerate.
.
Normal D3 dosing of 1000IU-4000IU can help (4000IU daily is the Endocrinology society D3 dosing recommendation) and should not require Magnesium and may still benefit in headache conditions.

D3 levels are worth a look, for sure!
Check with your Doc!

Good news you're out of a bout, but keep that diary handy and be sure to remember it's there when you next have a CH (hopefully never) and when you visit a specialist.
Excellent work Maurs99.

Cheers, Ben.


Posted in Batch's anti-inflammatory regimen for CH on 03 Jul, 2013 - 4:07 pm

Hi to all,

The pathology test results are in.

After going down to 10,000IU D3 per day and back up to 15,000IU per day, of the Swisse D3 and all the co-factors, as I said earlier, my serum Calcium level was a bit high - 2.6 from a desirable range of 2.1-2.55.
I think, as a result my heart rhythm was a bit dodgy...
Calcium homeostasis is very tight, not leaving much margin for error.

Too much serum Calcium interferes with my heart rhythm drug - Atenolol (Noten), high serum Calcium affects uptake and half-life of this drug.
A problem for me and not for the regimen.
It is a minor interaction and only affects users of Beta-blockers like Atenolol and propranolol.

I had to better manage serum calcium with less dietary calcium and K2 MK7 supplementation. The only variable I re-introduced was K2 MK7, to redirect serum calcium away from tissue and into bone. It seems to have worked.

13 JUN my latest pathology.

Serum calcium - now 2.4 from the desirable range 2.1-2.55
25(OH)D serum level - 146nmol/L

GGT liver count down from 244 (High from Imigran use) now dropped to 156.
I do not drink alcohol, despite this figure.
Last beer I had was nigh on 8 years ago, I think its through the system by now...
Total Cholesterol 7.0, because I ate crap whilst moving house, but I'm working on it with diet.

No CH attacks to report.
My GP says the top of the "desirable range" for 25(OH)D is 160nmol/l.
I am under that and still have CH relief - proof, it seems that I need not have ventured into alleged "high-dose" (above recommended) territory to achieve CH relief.
This is quite surprising.

25(OH)D at 146 nmol/L - JUST in the bottom of the "Green Zone" for CH relief.

http://i378.photobucket.com/albums/oo230/F8Driver/25OHDResponsetoVitaminD3Dose.gif

Current regimen (for me)

6AM
(Atenolol, my heart rhythm drug, not part of the regimen)

8AM
5000IU D3
2 X 1500mg high strength Fishoil
Vitamin A (R.E) 625 IU
Magnesium Citrate 75mg (equiv Mag Citrate 500mg)
With food and coffee.

12PM-2PM
5000IU D3
2 X 1500mg high strength Fishoil
With food

5PM (atenolol) and K2 MK7 125mcg

7-8PM
5000IU D3
2 X 1500mg high strength Fishoil
Vitamin A (R.E) 625 IU
Magnesium Citrate 75mg (equiv Mag Citrate 500mg)
With or just before main meal, whichever is earliest.

Head is clear.
No shadows, CH, or imigran required.
This works for me, in an otherwise intractable case.
On the 3 occasions I have withdrawn D3, my CH returns, slowly, but it's there.
It does not hammer me with a vengeance, e.g; like coming off Pred.
This gives me time to pop 1 Imigran and go from 10,000IU D3, back up to 15,000IU D3 per day, as I am still taking right now.

These are just my exploits, this is not a recipe for everyone.
In the absence of user input from other regimen users here, I am attempting to show how, over time, persistence and individualised tweaking may be required for each of us.

Individualising treatment is always a concern in managing CH, no matter what the drug.
Sure beats some of the tweaking I had to do with repeated Lithium, Verapamil, Dilatiazem, Topamax, Pred etc, etc.

As always, check out Batch's thread for updates.
My rantings here do not do his work justice, although I try and I DO have CH relief!
Yay! smile

Cheers, Ben.


Posted in Cefaly - Using Tens technology on 03 Jul, 2013 - 8:35 am

Thanks for the kind words Maurs99,

I do know what its like to be in your position, my correct CH diagnosis was a long time coming. When I eventually did gain access to a Headache specialist, the floodgates opened for me. I was allowed access to specialists, abortive drugs like Imigran, I was able to trial many preventives, though many did not work for me, or were intolerable, but having a Specialist that is so open minded and relentlessly looking for options helps.
I was given access to a team of Pain management clinicians that have never stopped helping me. Hats off to them, indeed.

My specialist is part of a Pain Management Unit (PMU) team, as is Dr Walsh (from memory). If you do find a Neurologist who is a resident in a public teaching hospital, attached to a University and a Pain Unit team, you will probably enjoy great success.
In a PMU team, you can access, Physiologists, Psychologists, Psychiatrists, Physiotherapists, Neurologists - pretty much any medical discipline available.
You may be surprised where you find help, in the most unlikely places.

About 90% of CH is episodic and patients will eventually get a break from it, allowing time to recover. If chronic, around 90% of those do respond to drug therapies.
Cases like mine are the exception to the rule, but even that is changing, thanks to a few determined souls who have shared knowledge with me. For this I am eternally grateful.

Patients have taken some research ideas into their own hands more recently.
A Gentleman who goes by the name Pete "Batch" Bactheler has pioneered an Oxygen delivery system, supporting high O2 flow rates, that successfully aborts CH in most people, if used correctly. I will be working with him and his literature to post more information on Oxygen therapy developments, adapted here for Australian CHers to use. I am sifting the literature now and contacting suppliers in Australia on how we can adapt these systems for use in CH here, its a little different to the US, but should be easy. I am not an O2 user, so it is a little more difficult than for me than handling medications.

"Batch" also created the "Anti-inflammatory regimen", there is a thread here in "Medications and Treatments" or viewable in "New posts" on this vitamin regimen.
This is now how I cope. If you care to read it (it's long and can complicated, I suppose) or the first couple of posts anyway, there is a drug free option with relatively few side-effects that works for many.

Essentially it involves taking a few vitamin supplements to assist in the converting and uptake of the main ingredient - Vitamin D3, in what would be considered large doses by those not yet onboard with the current literature.

This has been 81% effective as of FEB 2013. 240 of 300 surveyed CHers have gained relief from the regimen, including myself. My Imigran sits on the shelf, and occasionally, when I do make a mistake with the regimen, I do need to take one. But going from 5 attacks per day for most of the year, down to 4 Imigran tablets required since 28 April this year, is unheard of for me.

I was on the regimen last year, and for the first time ever, my Imigran injections expired before they could be used. I don't have 100% proof that the regimen works, but I have stopped taking it 3 times and 3 times my CH has come back after 72 hours or so. We are hoping for clinical validation of the regimen and working toward that as we speak.
Perhaps you could give it a try?
The details are on the thread here: http://www.clusterheadaches.com.au/forum_posts.php?id=2985&start=0[
/L]


Always work with your practitioner if you are going to try any medications or treatments for CH, including the regimen. Even having your D3 level checked ( a 25(OH)D blood test ) by your GP would be a good start. You don't even need to do that, you can begin vitamin D3 supplementation now and take the other vitamins listed too. Many have benefited from this drug free approach. Best to have Imigran there if you need it too.

You may need to retain your "Migraine" diagnosis in order to have Imigran prescribed.
Triptans are only PBS approved for use in Migraine.
Perhaps even have your headache condition called a "Migraine/Cluster headache" - a universally loathed indistinction around here.. Or perhaps cluster headache, with a Migraneous component, which is quite common. A lucky few like me, do have both headache types, so Imigran access is relatively easy.
It's silly, but necessary sometimes, as Imigran is not PBS subsidised for use in CH, yet.
We will work on that one day soon, when we have more receptive ears in Government.
In the meantime, we battle on in the system we have.

Honestly, we need to save "Australian of the year" titles for people like my Specialist, who conduct hundreds of clinical trials, make new drugs for us, study Migraine and treat all of us CH patients through Pain Management Units. Batch deserves commendation like this, but he lives in the US! I do hope to see someone who is pioneering in research end up with those sorts of titles and positions.
Their inputs are commendable and they deserve the credit.
I just type.

In the meantime, the forum is always here. If you are awake at night dodging a CH, or just need to talk anytime, you know where we are! smile

I hope that medications TAB on the left is of some use to you.
http://www.clusterheadaches.com.au/medications.php
All the information one needs to obtain Imigran is there, if I have it right...
It has many links you can click on for more information.
You can download a Headache diary there, print it off and start filling in too.
Then the hard work is done before you even get to the specialist.
This will help you when you get to a specialist and it keeps a good record for him or her when you do get there. This will help them to locate a preventive drug for you, which is key to managing long bouts of episodic, or chronic ongoing CH.

Thanks Maurs99.
Glad to help where I can.

Cheers, Ben.

It is no problem where you posted, all are welcome.
I am just wary of advertisers, we have had a few lately targeting us here. I just shifted this thread to the "New Member's" section, hope you don't mind...


Posted in Cefaly - Using Tens technology on 02 Jul, 2013 - 8:31 pm

Maurs99,

Sorry for the overload.
Check out the "Medications" tab on the left, its having an overhaul and has some info there on medications that may help.
Particularly the sections on Sumatriptan Imigran).
I have placed in (click here) type links to all the applicable data sheets, generics and PBS hurdles that people commonly encounter when seeking Sumatriptan in CH treatment.
It can be tough to navigate, let me know how you go.

There is some evidence to suggest that Eletriptan (Relpax) may have similar speed of onset to Sumatriptan (Imigran).
Eletriptan (Relpax) data sheet: https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAg
ent&id=CP-2010-PI-07709-3


This shows, surprisingly (to me) Eletriptan has a pretty speedy onset, with relief beginning around the 30 minute mark and tapering off slower than Sumatriptan. The datasheet shows comparative studies between our mainstay "Sumatriptan" and Eletriptan. So perhaps, clinically it seems a good choice. Though I am no Doctor...

However, the latest drugs (if still in patent and only available in brand name) are often pushed on GPs by drug company reps. I see them all the time at my GP, they stop only just short of physically ramming the stuff down his neck. Drug reps can be very forceful salespeople, I have been listening to their spiels for about 15 years now.

Your GP may be prescribing what seems best as a "second generation" drug, the "latest thing", or simply because of the "buzz word" factor. Maybe he/she got some free pens and some RELPAX post-it notes and a free Golf membership, who knows???

Practically, here and now on the street, we can get access to Sumatriptan, a drug of very similar efficacy to Eletriptan (Relpax) in CH. I suspect, if you can tolerate Eletriptan, that you have been assessed as suitable for prescription of Triptans by your GP.

Sumatriptan (Imigran) has been around since 1990.
GPs are over the buzz word factor with this drug. The patent has lapsed and generics are available making it easily accessible and relatively cheap.

I use up to 4 Imigran FDT tablets per day, when my CH is active.
I have my GP use a mechanism called "Regulation 24" authority prescription; whereby he can prescribe a box of 4 X Imigran tablets to me, with 5 X repeat prescriptions.
This enables me to access 24 tablets in one pharmacy visit.

Over the course of an average year, I average 24 tablets in 24 days and have repeated this many times. We have pushed the PBS as hard as possible on this and I have no trouble keeping up supply in my CH condition. I do stockpile FDT when not having attacks, sometimes shelving up to 48 tablets. As soon as CH is more active than usual (I'm chronic), I get scripts written and filled. If I am lucky, I can keep up supply with my CH's demand.

If and when I do hit a PBS brick wall, GPs can still offer private prescription, where you pay full price. The only limit here is dosage limit - 300mg per day. That's 6 X 50mg Imigran tablets per day and I've never used more than 4, trust me, you don't want to go that far, if you can avoid it. Your Liver and Kidneys will not appreciate it...

I also have my specialist prescribe Imigran injection through a public hospital and pain management unit. I can see no reason why your GP could knowingly and conscionably withhold any drug of known efficacy from a patient in severe pain. You may have to point this out.

I believe GPs took an oath, somewhere in which, the agreed to engage in ethical conduct and to assist patients where they can - e.g; hand over the drugs buddy...

Let me know how you go mate.
I have a 100% success rate so far in "tuning in" GPs on Imigran. smile
I will be happy to help, should you encounter any resistance.

Ve have vays of making zem prescribe... smile

Seriously, I just want to help get relief.
It frustrates me that a GP can use google as a tool to seek diagnosis, but cannot validate correct dosage protocols in a well known, well established drug in this age.
There really is no excuse.

Oh, nearly forgot...
Triptans are abortive drugs, taken per attack.
You may want to seek a preventive medication, like Verapamil.
You can work with your GP to find a preventive drug, they are listed in the "Medications" TAB on the left. All there, I hope it reads OK, just finished it yesterday...

You may also want to get your GP to write a referral to a specialist.
I'm "Geographically challenged" but I see from Google maps that "Bongaree" is not to far from Brissie.

Here's the QLD practitioner's tab:
http://www.clusterheadaches.com.au/get_help.php?show_state=qld#show


We have been hearing good things about a Dr Walsh up there:

Dr Walsh
07 38474366
Greenslopes hospital
Brisbane, Queensland
member comment:
"Dr Walsh is a neurologist who suffers from CH so he knows what you are going through first hand. It might take a few months to get to see him though."

I have sent 2 newly diagnosed CHers (ex-migraine sufferers too) his way recently, I must check with them and see how they got on.

Cheers, Ben.

PM me anytime if I can help.


Posted in Cefaly - Using Tens technology on 02 Jul, 2013 - 2:47 pm

Hi Maurs99,

Welcome to the site.

As a new member, I would encourage you to post in the "New Member's Area" before dropping a product link on users of the site. It is a little difficult in this context to tell a genuine CHer and new site member, from someone who came here to advertise, which is an ongoing problem and a challenge for the site.
Nonetheless, welcome!

Warning: Science ahead!

I conducted a quick review of "Cefaly", there may be holes in it, as I only had a quick glance, in relative research terms.

I have not used the "Ceflay" device, nor will I, and here are my reasons why:

Safety:
A search of the Australian Therapeutic Goods Register, or TGA, under medical devices, shows no current, or pending approvals for the product "Cefaly".

From the TGA medical device register:
"Australian Register of Therapeutic Goods (ARTG)
0 entries available
Search: Cefaly"

A similar TGA search under the name "St Jude", (a manufacturer of Occipital Nerve Stimulator (ONS) implants approved for use in Headache conditions), shows currently 448 TGA approval entries for their medical devices.

The "Electrocore" Vagus nerve stimulator, also mentioned at Headaches Australia has safety approval on the TGA register, for use in Migraine Headache.

This shows that whilst the above products listed with the TGA have been approved as "safe" (as in they won't cause harm to you, etc.) the "Cefaly" product has not yet met these safety requirements in Australia.

I am unsure as to whether approvals are being sought by the company, but see no mention of their product awaiting approvals, on the queue at the TGA goods register for legal and safe sale of their product in Australia. (I note CE approval, which should make the device considered "safe" in Australia and eligible to be sold)

Safety approval can only demonstrate that a device will not harm you, but has nothing to state about the efficacy of any such device in treating any medical condition.

I set about conducting a quick review of the product and it's cited reference material, but it seems John Underhay has already done most of the hard work there, props to him: http://www.skepticnorth.com/2011/10/evaluating-cefaly/

But I still took a look myself, as an ex-ONS candidate, an Electronics Technician and lifelong CHer.

The "How it works" page on the Cefaly site, for me raises many concerns. http://cefaly.com.au/index.php/how-it-works

Cefaly refer to it as a type of TENS (Transcutaneous Electrical Nerve Stimulation): http://en.wikipedia.org/wiki/Transcutaneous_electrical_nerve_stimul
ation


From the Cefaly site, of TENS: "This mechanism is called the gateway control system, in other words the influxes of touch sensitivity are increased to the point that they do not leave any space for the influx of pain stimulus."

In basic Neuromodulation theory, increasing input stimulus sensitivity to the point where no space is left for influx of pain stimulus, put simply, may be comparable to hitting your thumb repeatedly with a hammer in order not to feel your head pain.

If one "overloads" their sensory input, in my experience with my own CH attacks, it can shut sensory input down to the point of unconsciousness. Some seasoned CHers still report unconsciousness as the result of 10/10 severity attacks. A CH attack in itself can often be a sensory overload and result in shutdown, without the help from any other outside influence, like a hammer, or this device. Something no Migraine is likely to be able to do, I would think....

I fail to see how this alleged "mode of action" could help during a CH attack, or even a Migraine for that matter.

Most TENS units include instructions never to use above the neck.
The "T" in TENS stands for Transcutaneous - across the skin.
From what I understand, when electrical current is applied above the neck, or directly to the head, the "Transcutaneous" (Through the skin, mode of electrical current delivery) changes position and becomes "Transcerebral" (Electrical Current passed through the head/brain).

The FDA has placed tight controls and upper limits on the delivery of Transcerebral currents and voltages in existing approved implantable stimulator devices (like ONS) and recommends strongly against the application of current by use of TENS directly applied to the head, or above the neck.

Just a few very short details on what the FDA does recommend TENS manufacturers should state in their product manuals:

From the FDA recommendation Precautions & warnings sections:

We recommend the user manual advise users of the following:

- TENS is not effective for pain of central origin, including headache;
- Since the effects of stimulation of the brain are unknown, stimulation should not be applied across your head, and electrodes should not be placed on opposite sides of your head
- You may experience headache and other painful sensations during or following the application of electrical stimulation near your eyes and to your head and face


Source: http://www.fda.gov/MedicalDevices/DeviceRegulationandGuidance/Guida
nceDocuments/ucm198645.htm


A quick read of the FDA recommendations to TENS manufacturers (link above) should allow one to make an informed decision on using this device, or any like it.

The "How does Cefaly work? - Detailed" page, in my view, is a work of art in weasel-wording. I've ready a study or two and this says nothing of any merit to me about how it is thought to work, especially in relation to known headache Pathophysiology.

(Does it reduce CGRP levels? for instance... In it's target application - Migraine; CGRP is an attribute shared with CH; there's an easy and measurable biomarker for a clinical study, but one they have neglected to test for, or to mention.)

Their own "studies" page: ( http://cefaly.com.au/index.php/studies ) has no references, citations or links, so we can't even see who conducted most of their "studies" or their real clinical outcomes.

I obtained a full PDF copy of the one study they do cite:

Migraine prevention with a supraorbital transcutaneous stimulator : A randomized controlled trial
Neurology; Published online before print February 6, 2013;
Jean Schoenen, Bart Vandersmissen, Sandrine Jeangette, et al.


Link to abstract: http://www.neurology.org/content/early/2013/02/06/WNL.0b013e3182825
055


When searching the study for references to the term "Cluster headache", that's exactly what I got; references and citations to work already carried out by others. This study simply references other studies already conducted into cluster headache, primarily into the use of Occipital Nerve Stimulation (ONS).

I understand the use of the term "Supraorbital" here, but think it is misleading. Applied current must travel via the path of least resistance to Earth/Ground. In this case, I would suggest it would do so through your head, making it "Transcerebral" applied current.
If the unit uses two or more terminals, or contacts to apply voltage in a loop, then this voltage is applied between those contacts, still Transcerebral. Still, some current leakage must be proposed to make it through to your nerves, or how would it attempt to treat Migraine? Don't take my word for it, check up "Ohm's Law".

Perhaps most telling is their admission, (if I'm reading it right) is that STS simply did not work:

(STS= supraorbital transcutaneous stimulation)

"That the reduction in migraine days after effective STS treatment just failed to reach the level of significance compared to sham stimulation may be due to the fact that the study was powered for responder rates, not for reduction in migraine days. Severity of remaining migraine days was not reduced by the STS, which is a common finding in other preventive drug17 or neurostimulation trials.5"

???

How they can reach this conclusion is beyond me:

"Conclusions: Supraorbital transcutaneous stimulation with the device used in this trial is effective and safe as a preventive therapy for migraine. The therapeutic gain (26%) is within the range of those reported for other preventive drug and nondrug antimigraine treatments."

I should point out that (from memory), in a Randomised Clinical Trial (RCT) in headache conditions, an allowable margin for placebo effect in respondents is around 40% which should be and is factored in, when studies are looking for reputable outcomes.

Also, that for a drug to be considered effective and gain FDA approval it must show at least 50% efficacy in clinical trials in the condition it is proposed to treat, as Sumatriptan did when it was first FDA approved in the US, for use in Cluster headache.

This is not to be critical of you Maurs99, for making us aware, or for asking a perfectly valid question. It is my own opinion on this device and of it's application in headache disorders, that I think it will prove to be useless if not dangerous in the long term.
But, I could be wrong... smile

I am critical of the device and it's literature, not the poster of the information. I'm not shooting the messenger here...

Cheers, Ben.

For those who will again state that I am being "too technical" I should point out that there is a New Member's section, for new posters, where they can introduce themselves and we can all go easy on newbies. Also that as a Technician, analysing the literature on an electronic device, the subject matter is by design; technical.


Posted in Barry T Coles on 01 Jul, 2013 - 7:04 pm

Hi Kate,

I miss Barry a lot too.
We dedicated the O2 page to him and his work.
The BTC O2 treatment page.
We also got a national O2 supplier's register up and running, which he did see and seemed quite happy with.

Barry did a lot of good work for a lot of people around the world and he is sadly missed by all. The outpouring of emotion at the US site is testament to the scope of his efforts to help others.

Coincidentally, Barry did a lot of work with his friend "Batch" from the US site.
Although I'm surely not worthy and ill equipped to fill such huge shoes as Barry's, I have made some attempt to step up and continue Barry's work as best I can.

Batch appointed me "The man" (his words) on the anti-inflammatory regimen in Australia, which Barry originally brought to us here. I have worked closely with Batch and very hard here to adapt the regimen for Australian rules, regs, pharmacies, specialists and all Aussie CHers. We have huge interest and are closer than ever to clinical validation of the regimen, I will keep the site posted on the regimen thread. So much going on behind the scenes there and very exciting.
I think Barry would approve...

I'm also working on some site content, rewriting some of the outdated TABs on the left.
One of these jobs is to add some new O2 news to the BTC O2 treatment page, which will happen soon, I am sourcing content as we speak.
There have been some exciting new developments, clinical trails, new breathing techniques and new equipment for O2 users.
I'm sure Barry will have kept us updated, I will try to do the same as best I can.

In Barry's absence, I will do my best to keep the site updated and to do the right thing by Barry and his monumental efforts for all CHers. Barry is always in my thoughts as I consider how to write on O2 and keep the info current.
Gee, He is a hard act to follow!

I hope we all do Barry proud.
I do miss him and wish he was here to see the regimen's progress, indeed.
Eternal thanks to Barry, I miss him a lot around "the nut hut" as he put it...
icon

Cheers, Ben.


Posted in Batch's anti-inflammatory regimen for CH on 29 Jun, 2013 - 1:00 pm

Hi to all,

Yesterday I glanced at this thread title and it had 1300 odd views listed next to it.
Today, I saw it again and it has 1600+ views.
This happened once before, possibly on more than one occasion.

Either it is generating a lot of interest and that would be nice, or someone's having a lend of me and jacking up views by clicking on the page!
300 views overnight? Seems improbable...

I would like views here to be an accurate reflection of genuine interest in the regimen.
I just want site users to know it ain't me doing it.

Anyone have any idea what is happening?

EDIT: 1 July, 1966 views?
Another 300+ views overnight?
Perhaps we need Roger to check the IP logs and see who is doing this...disgruntled ex-members perhaps?
I'm sure Roger can work his IT genius and quite easily find out who is artificially bumping up views...

Whoever it is, keep it up, it only serves to add to the interest in using the regimen and ultimately, reaching pain free status.
Thanks for getting all Batch's work the attention it deserves!

Cheers, Ben. smile

P.S. - To those checking this out, my own experiences written here are experimental and do not correctly articulate the regimen, the hard work put into it and all the science behind it. Batch has his hard work posted on his US threads and much more input from regimen users in the US than we are ever likely to generate here on this site in Oz.
I encourage a healthy separation between my own regimen experiences, "tweaking", opining and the actual Scientific work that Batch has put into this.
Please do not confuse my own meager experiences here for fact, or representative of the Regimen, Batch or his work.


Posted in Hi another uk newbie to this site on 28 Jun, 2013 - 10:08 pm

Excellent post Peter!

This sort of info is Gold, hard earned and hard to come across.
This question is asked of me now and then and I have absolutely Nooooo idea...
I shall refer international jetsetter CHers back to this post!
Agreeably, but regrettably I'm better off "Nanny managing" (so it seems) here in the backward system it is, for sure...
icon
Cheers, Ben.


Posted in Double Dosing - knowing your medications on 26 Jun, 2013 - 9:29 pm

Hi to all,

A few recent concerns have led me to dig up some Pharma industry advice on knowing your medications. I harp on about it all the time, but doubling up on medications is something that comes up a lot and unfortunately is still being overlooked by some GPs, specialists and Pharmacists. Medicare are putting in eHealth records and Pharmacies have checks at point of sale, so progress is being made in the right direction.
But CHers are still telling me this is happening and that they can still quite easily end up double dosing on their medication(s).

I know it can be difficult to cope with complex medical terms, active ingredients and brand names on top of a new CH diagnosis and the horrific head pain.
The newly diagnosed CHer should be correct in their assumption that their practitioner has their best interests at heart and should trust in their practitioner's guidance.
Unfortunately, mistakes still do happen, but if you know your drugs, you can pick up on mistakes before they become dangerous.

I hope this works as a resource, so CHers will continue to get to know their medications before they hit trouble.

Cheers, Ben.

From NPS Medicinewise.

Source:
http://www.nps.org.au/conditions-and-topics/topics/how-to-be-medici
newise/managing-your-medicines/find-the-active-ingredient


Find the active ingredient

Most medicines have two names: the active ingredient and the brand name. The active ingredient identifies the chemical in the medicine that makes it work. The brand name is the name given to the medicine by its manufacturer.

Being medicinewise means knowing where to find the active ingredient every time you get a medicine so that you can:

- recognise when two different brands are the same medicine
- identify when two medicines are not the same. Some brands of medicine sound very similar, but contain different active ingredients and are taken for different conditions
- check that you’re not taking a medicine you’re allergic to, or shouldn’t be taking with your other medicines
- identify suitable alternatives to your usual medicines when travelling overseas.

Avoid accidental double dosing

Check the active ingredient every time you get a medicine to avoid accidental double dosing. This can be a risk when you get a different brand of the same medicine from a doctor or pharmacist, or when you choose a medicine yourself that has the same active ingredient as your other medicines.

Checking the active ingredient is particularly important when you leave hospital. In this case, the pharmacy may stock only one brand of your medicine, which may not be the one you normally take. If you continue with your usual brand of medicine at home, not knowing that the one supplied by the hospital is the same, you risk having an accidental overdose or side effects.

Find the active ingredient on the packaging

The active ingredient name is shown on the medicine’s packaging. The packaging must also show the strength; that is, how much of the active ingredient is in that particular formulation.

Example medicine packet

http://www.nps.org.au/__data/assets/image/0010/168256/ad_paracetamol_lowres_v2.png
An example pain reliever medicine packet.
Note: This is a fictitious product and all directions on the packaging are an example only. This product does not imply Therapeutic Goods Association approval and is purely for educational purposes regarding medicines use.

Click the link below to see 3D version of this packet (requires Flash).
http://www.nps.org.au/conditions-and-topics/topics/how-to-be-medici
newise/managing-your-medicines/find-the-active-ingredient


Dosing amounts vary between medicines and will not be the same in any pain relief medicines you have at home. Always read the label and follow the instructions to ensure that you are taking the correct dose for you.

If it’s a prescription medicine the active ingredient is also on the label applied by the pharmacist (known as the pharmacy dispensing label).

Example of a pharmacy dispensing label

http://www.nps.org.au/__data/assets/image/0004/118084/Medicine-label-examplela.png

Occasionally, a medicine has more than one active ingredient. If so, the name of each active ingredient is shown on the medicine’s packaging and pharmacy dispensing label.

Ask your doctor or pharmacist if you are ever unsure about what the active ingredient is or where to find it.

You can also watch our video, Don’t gamble with your medicine’s most important ingredient, that shows where the active ingredient is printed on the pack of your medicine.

http://www.youtube.com/watch?feature=player_embedded&v=cpUlcSEsglo[
/L]


Posted in prednisone on 25 Jun, 2013 - 7:48 am

Bren,

As always, your approach to CH for a relative newbie is nothing short of inspiring, Bren.
What has taken many of us years to achieve, it seems you already had worked out before CH even hit you. Still, it would have been completely reasonable, perhaps "normal" par-for-the-course even, to cave in under the pain of CH, but as ever your strength of character shines through the condition.
This significance of your strength and approach should never be understated, or forgotten, now or in future. A true example to others who are struck suddenly with CH.
Whatever you're doing, keep doing it mate!
Always inspiring Bren! smile

On another note. (Sorry to bring the thread down...)
I mention this purely because Aspirin and Prednisolone have been mentioned within the same thread. Both drugs should not be taken simultaneously.
Aspirin and Prednisolone, taken together can cause big problems.

I had 30 years of safe Aspirin use.
I had clear Endoscopies, with no gastrointestinal issues.
I had used Pred before, in isolation, without too much complication.

I did mix Aspirin and Pred once, on the end of a long Pred taper of about 2 months, under advice and out of desperation. I was nearing the end of the taper when I received advice to "bump up the Pred". I got instant stomach ulcers for my trouble and this time it took me about 18 months to fully recover. I still suspect my psyche and skeleton are worse off for the experience, my bones are disintegrating at a more rapid rate than ever before...so the scans show...

The ulcers are gone now. I won't take Pred ever again, no matter how bad CH gets.
I will undergo an IV Lignocaine infusion, in hospital before I ever touch Pred again.

Pred is one of the most divisive drugs often discussed on the site and others like it.
Many consider it a personal choice to use it, when in reality it is a prescribed drug, making it the decision and responsibility of the prescriber to conduct risk vs benefit analyses and to closely supervise it's use in patients.

We don't know how CH works, or how most of the drugs used to treat it may work.
We do know how Pred works, so there is little excuse for lack of practitioner knowledge, or it's misuse these days. Science has truckloads of data on the effects of Pred and should consult this data before throwing it around so liberally.

In my view, it should be used by practitioners in CH, strictly as a transitional drug, in order to bring about temporary relief whilst a suitable preventive is found. I realise this can be challenging, but frustrates me to hear more often than not, that Practitioners, particularly GPs are not even looking for a preventive whilst prescribing Pred.
CH relief no matter how short, or at what expense seems a good enough outcome for most of them.

For a practitioner to take CH away for maybe 4 weeks, only to have it return, (often for the worse) is to me, a parlor trick, and a cruel one at that.

Back in square one is where you often find yourself after the useable life of a drug in CH.
I have seen the remarkable power of Pred to bring people back from the edge, albeit temporarily. So it's an important tool in a practitioner's toolbox, for sure.

I've also seen people wish they had never taken it, because square one looks pretty damn good from the end of a bad Pred experience, quite common if the pages of this site are any indication. Square one, with it's endless CH seems better than the deficits of badly supervised Pred treatment that many are left with.

If Prednisolone were used only as a transitional drug, in order to ramp up preventives, it would seem to me to be far more effective CH management and less of a "Look, I can make your CH go away - Tada!!!!" iconfrom prescribing Doctors.

My 2 cents...

Cheers, Ben.


Posted in prednisone on 23 Jun, 2013 - 3:26 pm

I never begrudge anyone CH relief, ever.
I would on this occasion, encourage readers to know their drugs, know what to look out for and to have a specialist monitor use of Cortisone in CH treatment.
GPs are not CH experts.
Neuros throw this shit around like M&Ms, with little , if any safety monitoring. Cortisone is a transitional therapy, neither preventive, nor abortive medication.
Not having a go Wrighty, but if a specialist had me on this for 2 months, I would be looking elsewhere for supervision.

Just a few of those nasty side-effects...
If this is too technical, let me simplify it;
too much Cortisone can make you dead, if you're lucky.

PRECAUTIONS:
During prolonged corticosteroid therapy, adrenal suppression and atrophy may occur and secretion of corticotrophin may be suppressed.

Duration of treatment and dosage appear to be important factors in determining suppression of the pituitary adrenal axis and response to stress on cessation of steroid treatment. The patient's liability to suppression is also variable. Some patients may recover normal function rapidly. In others, the production of hydrocortisone in response to the stress of infections, surgical operations or accident may be insufficient, and death results. Therefore, withdrawal of corticosteroids should always be gradual.

Abrupt withdrawal of corticosteroid therapy may precipitate acute adrenal insufficiency (see ADVERSE REACTIONS). In some cases, withdrawal symptoms may simulate a clinical relapse of the disease for which the patient has been under treatment.

Because PANAFCORTELONE manifests little sodium retaining activity, the usual early sign of hydrocortisone overdosage (i.e. increase in bodyweight due to fluid retention) is not a reliable index of prednisolone overdosage. Hence recommended dose levels should not be exceeded, and all patients receiving PANAFCORTELONE should be under close medical supervision. All precautions pertinent to the use of hydrocortisone apply to PANAFCORTELONE.

Use with caution in the following circumstances
Use with caution in patients with impaired hepatic function, a reduction of dosage may be necessary. In treating chronic active liver disease with the drug, major adverse reactions such as vertebral collapse, diabetes, hypertension, cataracts and Cushing's syndrome occur in about 30% of patients.

Use with caution in nonspecific ulcerative colitis, if there is a probability of impending perforation, abscess or other pyogenic infection. Caution must also be used in diverticulitis, fresh intestinal anastomoses, active or latent peptic ulcer, renal insufficiency, hypertension and myasthenia gravis, when steroids are used as direct or adjunctive therapy. Use with caution in patients with epilepsy, diabetes mellitis, uraemia and in the presence of diminished cardiac reserve or congestive heart failure (see ADVERSE REACTIONS).

The possibility of development of osteoporosis should be an important consideration in initiating and managing corticosteroid therapy, especially in post menopausal women (see ADVERSE REACTIONS).

The risk of gastrointestinal ulceration or hemorrhage is increased when alcohol is used concurrently with glucocorticoids.

Infection
Corticosteroids may mask some signs of infection (such as fever and inflammation), and new infections may appear during their use. There may be decreased resistance and inability to localise infection when corticosteroids are used. Susceptibility to infection is not specific for any particular bacterial or fungal pathogen.
Patients should not be vaccinated with live vaccines while on corticosteroid therapy.

Other
immunisation procedures should not be undertaken in patients on corticosteroid therapy, especially on high doses, because of possible hazards of neurological complications and lack of antibody response. Immunization procedures may be undertaken in patients receiving corticosteroids as replacement therapy.
Children who are on immunosuppressant drugs are more susceptible to infections than healthy children. Chickenpox and measles, for example, can have a more serious or even fatal course in children on immunosuppressant corticosteroids. In such children, or in adults who have not had these diseases, particular care should be taken to avoid exposure. If exposed, therapy with varicella zooster immune globulin (VZIG) or pooled intravenous immunoglobulin (IVIG), as appropriate, may be indicated. If chickenpox develops, treatment with antiviral agents may be considered.

Patients with active or doubtfully quiescent tuberculosis should not be given PANAFCORT or PANAFCORTELONE except as adjuncts to treatment with tuberculostatic drugs as reactivation of the disease may occur. Chemoprophylaxis is indicated during prolonged corticosteroid therapy.

Check the following before use
During long courses of treatment, laboratory and metabolic studies should be made. Fluid retention should be watched for via a fluid balance chart and daily weighing. Sodium intake may need to be reduced to less than 1 g daily and potassium supplements may be necessary.

Use in Children
Children on long term steroids must be carefully observed for potential serious adverse reactions such as obesity, growth retardation, osteoporosis and adrenal suppression.

Use in Elderly
Caution is recommended for elderly patients as they are more susceptible to adverse reactions.

Carcinogenicity/mutagenicity
In male rats, administration of prednisolone in the drinking water at a daily dose level of 0.4 mg/kg for two years caused an increased incidence of hepatocellular tumours. Similar results were obtained with triamcinolone acetonide and budesonide, indicating a class effect of glucocorticosteroids. The hepatocarcinogenic response to these drugs does not appear to be related to genotoxic activity.
The carcinogenic potential of prednisone has been evaluated in mice at oral doses up to 5 mg/kg/day for 18 months. No carcinogenic effect was noted in the mouse.

Use in Pregnancy
Category A of Australian Categorisation of Risk of Drug Use in Pregnancy. In animal experiments, corticosteroids have been found to cause malformations of various kinds (cleft palate, skeletal malformations) and abortion. These findings do not seem to be relevant to humans. Reduced placental and birth weight have been recorded in animals and humans after long term treatment. Since the possibility of suppression of the adrenal cortex in the new born baby after long term treatment must be considered, the needs of the mother must be carefully weighed against the risk to fetus when prescribing corticosteroids. The short term use of corticosteroids antepartum for the prevention of respiratory distress syndrome, does not seem to pose a risk to the fetus or the newborn infant. Maternal pulmonary oedema has been reported with tocolysis and fluid overload.

Use in Lactation
The drug is excreted in breast milk; therefore, administration to nursing mothers is not recommended.

Interactions with other drugs
The following drug interactions with corticosteroids have been selected on the basis of their potential clinical significance: antacids, antidiabetic agents (oral or insulin), digitalis glycosides, diuretics, drugs which induce hepatic microsomal enzymes, such as barbiturates, phenytoin and rifampicin; potassium supplements, ritodrine, sodium-containing medications or foods, somatrem or somatropin, vaccines, live viruses or other immunisations.

Effects on Laboratory Tests
Glucocorticoids may decrease uptake and protein-bound iodine concentrations, making it difficult to monitor the therapeutic response of patients receiving the drugs for thyroiditis. Glucocorticoids may produce false-negative results in the nitroblue tetrazolium test for systemic bacterial infection.

Glucocorticoids may suppress reactions to skin tests.

ADVERSE REACTIONS
:
Short-term administration of PANAFCORT or PANAFCORTELONE, even in massive dosages, is unlikely to produce harmful effects. The majority of adverse reactions from corticosteroids are those resulting from withdrawal or from prolonged use of high doses.

More Common Reactions

Gastrointestinal:
Adverse gastrointestinal effects of corticosteroids include nausea, vomiting, anorexia (which may result in weight loss), increased appetite (which may result in weight gain), diarrhoea or constipation, abdominal distension and gastric irritation.

Cardiovascular:
The mineralocorticoid activity of a steroid may lead to salt and water retention which can also result in hypertension. Hypokalaemia can lead to arrhythmias and cardiac arrest.

Neurological:
Adverse neurological effects have included headache, vertigo, insomnia, restlessness and increased motor activity, ischemic neuropathy, EEG abnormalities and seizures.

Large doses can cause behavioural and personality changes ranging from nervousness, euphoria or mood swings to psychotic episodes which can include both manic and depressive states, paranoid states and acute toxic psychoses.
It is no longer believed that previous psychiatric problems predispose to behavioural disturbances during therapy with glucocorticoids. Conversely, the absence of a history of psychiatric illness is no guarantee against the occurrence of psychosis during hormonal therapy.

Dermatological:
Dermatological adverse effects of corticosteroids include impaired wound healing, facial plethora, increased sweating, easy bruising, hirsutism, an acneiform eruption on the face, chest and back, red striae on the thighs, buttocks and shoulders.

Several months of high dose therapy can often result in thinning of skin. Dermatologic manifestations of hypersensitivity to the corticosteroids include hives and/or allergic dermatitis, urticaria, and angioedema. Corticosteroid induced purpura resembles senile purpura. This purpura usually occurs on extensor surfaces, dorsum of the hand, and radial aspect of the forearm.

Endocrine:
The endocrine effects of the glucocorticoids involve variously the hypothalamic pituitary adrenal axis; the parathyroid and thyroid. There are also metabolic effects, primarily involving the carbohydrates. Suppression of growth may occur in children.

Cushing's syndrome may result from prolonged elevation of plasma glucocorticoid levels. Corticosteroids have also been reported to increase or decrease motility and number of sperm in some men. Disorders of menstruation are common.

Antagonism occurs between the parathyroids and hypercorticism. Latent hypoparathyroidism may be unmasked by administration of corticosteroids. The phosphate retention occurring in renal failure caused by adrenal insufficiency may also make hypoparathyroidism manifest.

Biochemical:
All glucocorticoids increase gluconeogenesis. Glucose tolerance and sensitivity to insulin are decreased but provided pancreatic islet function is normal carbohydrate metabolism will not be noticeably deranged. Steroid diabetes, has been reported to develop in one fifth of patients treated with high glucocorticoid dosage. High dose corticosteroid therapy may induce marked hypertriglyceridaemia with milky plasma.

General:
Retardation of growth by long term corticosteroid treatment in children.

Haematological:
Corticosteroids will increase the total WBC count, with an increase in neutrophils and a decrease in monocytes, lymphocytes and eosinophils.

Immunological:
The frequency and severity of clinical infections increase during glucocorticoid therapy.

Musculoskeletal:
Osteoporosis and vertebral compression fractures can occur in patients of all ages.
Osteoporosis is an indication for withdrawal of therapy.
Myopathy, characterised by weakness of the proximal musculature of arms and legs and their associated shoulder and pelvic muscles, is occasionally reported in patients taking large doses of corticosteroids. It may occur soon after treatment is begun and be sufficiently severe to prevent ambulation. It is an indication for withdrawal of therapy. Avascular aseptic necrosis of bone has often been described and preferentially involves the femoral and humeral head.

Serious or Life Threatening Reactions
Suppression of the hypothalamic pituitary adrenal axis is one of the consequences of repeated administration of glucocorticoids (see PRECAUTIONS). In some cases acute adrenal insufficiency after a period of glucocorticoid treatment has proved fatal.

Less Common Reactions

Gastrointestinal:
Pancreatitis and ulcerative oesophagitis can occur. Peptic ulceration is an occasional complication. The high incidence of haemorrhage and perforation in these ulcers and the insidious nature of their development make them severe therapeutic problems. Some investigators believe the available evidence does not support the
conclusion that steroids cause ulcers. Others feel that only patients with rheumatoid arthritis have an increased incidence of ulcers. It has been proposed that the glucocorticoids alter the mucosal defence mechanism.

Neurological:
Latent epilepsy can be rendered manifest by corticosteroid treatment. Long term treatment may result in benign intracranial hypertension.

Ophthalmological:
Prolonged use of glucocorticoids may result in posterior subcapsular cataracts (particularly in children), exophthalmos, or increased intraocular pressure which may result in glaucoma or may occasionally damage the optic nerve and in rare cases, lead to blindness. Establishment of secondary fungal and viral infections of the eye may also be enhanced.

Withdrawal Adverse Effects
Muscle weakness, hypotension, hypoglycaemia, headache, nausea, vomiting, restlessness and muscle and joint pain. Muscle weakness and stiff joints may persist for three to six months after discontinuation of treatment.

Links:

https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAg
ent&id=CP-2011-CMI-03126-3


https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAg
ent&id=CP-2011-PI-03125-3


https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAg
ent&id=CP-2010-PI-06868-3


Posted in Hi another uk newbie to this site on 21 Jun, 2013 - 1:57 pm

G'day Tom,

I'm not the international traveler, so I'm unsure of exactly what costs you may face here without our Medicare card. You can't get Imigran over the counter here.
I do know you will need to pay to see a General Practitioner (GP) here for a prescription for Imigran. There's appointment cost for that, they vary, some over $100-$130 from what I overhear of billing departments in surgeries.

If you plan on doing this, make sure you bring your paperwork on CH diagnosis, because, although we are winning the awareness fight, many GPs here are slow on the uptake with CH and may deny you Imigran out of ignorance alone.
Imigran is not approved for use in any other condition than Migraine here, so there's a bit of ambiguity between the 2 conditions (Frustratingly) in order to "bend the rules" and enable CHers to access it... (Basically, proof of previous use will open doors to it here)

With a specialist's report in hand and evidence of previous prescribed Imigran, most GPs are quite co-operative and will write a script for you immediately. Then take your prescription to a Pharmacy, where you will have to pay full tote for Imigran.

If you are on the Tablets, or Imigran FDT tablets, I think a box of 4 will cost you somewhere between $11 and $37 AU, not entirely sure on that.
You may be able to access the nasal spray, at similar costs.
Forget Imigran injection, it probably won't happen here.
Even if you can get a script for 2 shots, it will set you back AU$130 odd and will have to be ordered in by Pharmacy and may take days, or even weeks to get, they just don't stock these on-shelf.

All quite expensive, you could be looking at AU$200 to access just 4 Imigran tablets here.

I am unsure, but have heard you can get Treximet (Sumatriptan 85mg with Ibuprofen) OTC in the UK. This may be let in here.

I would definitely be looking at stocking up before you leave and checking with airlines and/or customs. I know the injections are liquid and may not be let on planes.
But have heard of Imigran tablets making a journey around the world, unused, to return to Australia before.

O2 supply as a visitor, I would say, virtually no hope at all.
That requires a long wait to see a specialist, an "off-label" prescription, as it is only approved for use in respiratory disorders here, like COPD.
Then there's getting hold of a tank and setup.
Unless you're here for months, it's cost prohibitive and unlikely to happen.
Best bet there is to roll up id-attack, to a Fire station, where the guys are trained in emergency use of O2 and will give you a blast through the right mask, as per their training. I know this sound ridiculous, but I hear it has happened here before...
Sorry to give you the bad news mate.

Hospital visits, as you probably know are too slow for CH attack and access to O2, often resulting in a wait of many hours (attack is over) and a nurse with a nasal cannula (not a non-rebreather mask) with a ridiculously low flow rate for O2 in CH.

I do know a few people that have successfully taken Imigran tablets on planes out of here, and back here with no problems. Perhaps is best to load up before you leave and bring your own tablets, I hear you can buy Imigran OTC Over-the-counter there! Lucky, if so, indeed.

If you have a mechanism like our Reg24 script, you may be able to get your Doctor to prescribe 6 boxes of Imigran tablets before you leave.
I hope they can help.

Check out the "Practitioners" TAB on the left there, you may see a "CH aware" GP near where you are holidaying.

If you're stuck, drop me a PM.
I'll see what I can do!

I'll ask for some help from others more experienced in carrying the stuff over borders and get back to you Tom.

Peter? You came back in here recently as an Imigran user, did you bring any in?
Heather (Dusker) a Moderator here may also know.

Another member here "Guy" once communicated similar issues.
I know he has experience on this, perhaps drop him a PM, nice bloke, will help you out, I'm sure: http://www.clusterheadaches.com.au/member-profile.php?id=42

I know just about all the ins and outs of the system here for Imigran for Aussie users, but this is a gap in my knowledge, for sure.
I don't even have a passport and have never been on a plane, nor left these shores, so there may be some ideas out there yet. smile

Cheers, Ben.


Posted in aborted an attach cycle. on 21 Jun, 2013 - 12:44 am

Thanks for the ear Jo, very unexpected, but much appreciated.

If you need to think about any other medications, I have a bit of experience in this area and know which ones to avoid, which is most of them, for sure...
All drugs are poisons, but if one has to take any, CH patient experience is not found at the GP, the Pharmacist, or specialists, I suppose that's why Roger made this site.

This site does so much good for so many people.

Hope you are pain free ASAP.

Cheers, Ben.icon


Posted in aborted an attach cycle. on 19 Jun, 2013 - 11:34 pm

Thanks Jo,

Sorry for unloading that on your thread...I recently saw my Mum and her ravaged appearance just got the better of me, I suppose.
People have no choice to have CH, but a choice whether or not to smoke, I or my Mum are no different. I know it's an addiction and a disease, but somehow makes it no easier to watch.

If I set out to research my Mum's condition, it's pretty simple.
Yul Brynner said it in his famous posthumous ad in 1986.
"Whatever you do, just don't smoke".
Researching this is a no brainer; it takes anyone less then 5 minutes to find answers to this preventable disease.

Somehow it's hard to reconcile the many hours of research I do into CH, and all the medications I've taken, with the ease with which one can end disease from smoking.
I've made it my business to understand my CH condition and to do everything in my power to manage it, conquer it and in the meantime, to live with it.
I wish I could say the same for my Mum.
Oh, if CH were preventable... the lives we could have...

Thanks Jo and again, sorry....
The CH is fine, thanks to Batch and the D3 regimen. smile

I'm green and happy about it. smile

Hope all goes OK for you and your loved ones.
Be careful of the Prednisolone, it has a nasty sting in the tail, if you don't use it short term. There's much on the site about it.

Cheers, Ben.


Posted in aborted an attach cycle. on 19 Jun, 2013 - 9:49 pm

Hi to all,

A bit of recent study info on Smoking in CH, below.
Sorry for the overload.

I feel for all CHers, a disease we can do little about.
I feel strongly about Smokers, a disease that is entirely preventable.

When confronted with the severity and disability of CH, I find most CHers will gladly cease smoking, even if they perceive any possible minor benefit, whatsoever.

For the record, my Mum, when pregnant with me in the 70s, smoked Cigarettes, drank alcohol and smoked weed. She was a hippy. Based on info available at the time, she was not knowingly doing anything wrong. She would not knowingly have done any harm, she is fundamentally, a good person.

She has subsequently had more children and although enlightened on the dangers of smoking, she continued smoking whilst pregnant. She still will not refrain from exposing her young children, now young adults to passive cigarette smoke, which has led to problems for my siblings.

I am the only one of her 4 children with CH.
One of my siblings had "croup", a type of respiratory disorder for far too many years and was subject to passive smoke. Another sibling was born with Pulmonary stenosis. Who knows what links there may be? It does not stop my Mum from feeling the guilt of possibility, or stop her from smoking either.

I too, as an adult, smoked cigarettes and drank alcohol for about 7 years and have smoked weed. I have had CH from birth, first presented age 4. For me, my cessation of smoking cigarettes made no real discernible difference to my CH. I'm sure, in the long run that I'm better off for it.

Whether or not my Mum's smoking contributed to my lifelong CH, I don't know, neither does she, but as a parent she has witnessed more of my attacks than any other person and feels her own guilt about my pain, nonetheless.
I've done my best for my Mum, but to no avail.
Smoking is her disease and her problem.
We have all done our best to help her beat it, it's a hard one, indeed.

Passive intake of her cigarette smoke has always been a huge CH trigger for me. Still, her "need" for a cigarette seems more important than the health of her family, or a bringing about a well known and established trigger for my CH attacks.

After Cancer, many bouts of chest infections, pneumonia, emphysema, decreased lung function, heart disease, much time on Oxygen - all smoking related, she won't stop smoking. This is what will ultimately kill her and soon it seems.

My Mum still smokes, has had Cancer and is on her last legs from Cigarette smoking. Despite our efforts to help her refrain from her smoking habit, her addiction and denial of any ill-effects still dominate her health.

This has been a cause of ongoing anguish and heartbreak to all of her children. I am the eldest and whilst I don't usually, I can speak for my siblings on this occasion, as we all feel the same about this.

Perhaps, I have been a little too candid here, about my family and their lives. But it is an issue that affects us all deeply and for some reason tonight, I just felt compelled to spill my guts on it.

Apologies to anyone reading, but it sucks having incurable CH.
It sucks watching your Mum die from a preventable disease.
At times, I don't know which is harder to endure.

Cheers, Ben.

Not having a dig Jo, apologies.
I'm glad you've kicked it, as I did.
-------------------------------------------------------------------------------------------

Headache Journal. 2010 Jan
http://www.ncbi.nlm.nih.gov/pubmed/19804394

Cluster headache as the result of secondhand cigarette smoke exposure during childhood.

Rozen TD.
Source: Geisinger Medical Center, Department of Neurology, Wilkes-Barre, PA, USA.
Abstract

Unique to cluster headache (CH) compared with all other primary headache conditions is its association with a personal history of cigarette smoking. Studies have indicated that greater than 80% of CH patients have a prolonged history of tobacco usage prior to CH onset. How tobacco exposure can lead to CH has not yet been elucidated.

As secondhand smoke exposure during childhood has been linked to multiple medical illnesses could CH also be the result of childhood exposure to tobacco smoke?

The United States Cluster Headache survey is the largest survey ever done of CH sufferers living in the United States. The survey addressed various clinical, epidemiologic, and economic issues related to CH. Several survey questions dealt with the issue of personal and parental smoking history.

Results from the survey suggest that CH can result from secondhand cigarette smoke exposure during childhood as greater than 60% of non-smoking CH patients had parents who smoked. Strengthening the probable association between secondhand smoke exposure and the development of CH is the fact that double the number of survey responders developed CH at or before 20 years of age if during their childhood they lived with a parent who smoked cigarettes.
----------------------------------------------------------------------------------------------

http://www.thejournalofheadacheandpain.com/content/pdf/1129-2377-1-
S1-P54.pdf


Can cigarette smoking worsen the clinical course
of cluster headache?

The European Headache and Migraine Trust International Congress
London, UK. 20-23 September 2012

Introduction
Up to 90% of cluster headache (CH) patients have a prolonged history of cigarette smoking prior to the headache onset. It has been suggested a genetic link between CH and nicotine addiction and, also, that toxic agents found in cigarette smoke have a direct effect on the hypothalamus, a pivotal area for the pathogenesis of CH.

Purpose
To explore the relationship between cigarette smoking and the clinical course of cluster headache.

Methods
All outpatients with cluster headache, diagnosed according to the criteria of ICHD-II, who were, consecutively, seen from October 2010 to April 2012 at the Headache Centre, were subjected to a phone interview by means a specific standardized questionnaire (29 items), administered, always, by the same trained post-graduate medical doctor.

Results
A total of 200 patients were surveyed (172 male, 28 female; mean age ± SD: 48.4 ± 12.7; male/female ratio: 6.1:1). One hundred and twenty patients were current smokers, 42 former smokers and 38 non-smokers. The age of onset of CH was 29.8 ±13.6 years. Among all smokers and former smokers those who started smoking before age of 18 years had an onset of cluster headache earlier than those who started smoking after age of 18 years (P < .01, Student's t test).

All patients with chronic cluster headache were currently smokers. The episodic form (89%) was more frequent than the chronic one (11%). Chronic CH patients smoked more cigarettes per day (P < .01, Student’s t test) and started smoking before (P < .01, Student’s t test) than patients with episodic CH (P = .001, Student’s t test). The length of the active phase of CH was tripled compared to non-smokers (weeks ± SD: 15.1 ± 17.6 vs. 5.7 ± 4.7; P < .001, Student’s t test).

Conclusion
Our data showed that cigarette smoking is an aggravating factor for cluster headache, in particular for the lasting of the active phase.


Posted in US Supreme Court unanimously rules that genes extracted from the human body are not eligible to be patented. on 19 Jun, 2013 - 3:32 pm

I'm as cynical as you on this Peter.
I looked at the historical legal precedents set in patenting naturally occurring vs synthetic. The court decisions seem to swing back and forward like a pendulum...

The bloke who discovered insulin back when patented it, but then sold the patent to a University for $1. Good outcome, as we all got the benefits of a patent protecting a natural substance. But I also found as many exploitative examples for the negative...

For every "good" patient outcome in medical patents, I found another example of companies locking up access to treatment by hook, or crook.

It seems that for every glimmer of optimism, there is a law firm waiting to clamp down on it by some means, this is just a temporary win for someone, but I'm not sure who it will be... I suppose time will tell.

If Monsanto no longer own the patent on seed stock like a GM developed strain of Canola, how are we going to feed the masses? They deserve the right to protect their IP and research efforts, but at what cost to mankind?

All very rhetorical, I know...
It does make me both worry and wonder, at the same time.

Cheers, Ben.


Posted in Batch's anti-inflammatory regimen for CH on 19 Jun, 2013 - 3:21 pm

Thanks mate, still workin on it...

A very important contribution to the regimen that has been overlooked here by me, are ALL the CHers around the world who did this long before me.

They're the trailblazers and in my view, the heroes of this ongoing story. They put their bodies on the line in countries (mostly in the US) where they don't have a safety net like Medicare to catch them.

With Batch's immense input and their contributions, it gave just one CHer, me, the confidence to give it a try.
All I can do is try to spread the news if I can, a mere middle-man.

Thanks to all the people who tried this years ago, many hundreds for those it did not work and for and for those it did, I and many others thank you for your time and input.

I can say, we've now got the right ears pricking up in the medical profession here in OZ, where this has been largely ignored elsewhere.

I look forward to contributing in any way I can.

Cheers, Ben.


Posted in Medicare eHealth records on 19 Jun, 2013 - 3:12 pm

Hi to all,

A big problem I come across for both myself and in helping others, is that in our Australian medical system, often the left hand does not know what the right hand is doing.

Most problems one comes across in CH treatment are due to a lack of the right medical information being put under the right nose, in the right place, at the right time.

Example;
GP prescribes Medication A.
Specialist prescribes Medication B.

Both medications A & B may be the same drug.
They may also be from classes of drugs that conflict or interact with one another.
Your GP may not know what your specialist has prescribed, and vise-versa.
Pharmacists may not always pick this up, especially if you use a different pharmacist.

You get sent home with 2 different drugs, from 2 separate prescriptions, under 2 different names, that turn out to be the same drug.
As many will attest; this can land you in hospital real quick.

A centralised record, namely your medical file, would pick this up.
But it's locked in a cabinet at your GPs office, its not at the Pharmacy, where at times, it would be a bloody good help...

If you use multiple Pharmacies, (including having a medication dispensed "in-house" in hospital (1), and then use a normal shopfront chemist (2),) there is no real mechanism to make sure that you don't end up with a contraindication, a medication double up, a stuff up, an undesirable, or potentially deadly drug interaction.

There are so many scenarios where CHers are caught short, lacking that vital piece of paper, in the form of a report, blood test or prescription, that would otherwise enable prompt, safe and correct treatment.

After hours GP care will get most CHers nowhere, because the clinic lacks your file.
You may generate a new file however, that labels you something you are not, due to widespread GP ignorance of CH. (Unacceptable, when they now have google...)

If your GP goes on holiday and you are given an alternative GP, they do not have the time to sift 300 pages of your CH history, or to research the condition.

Presenting at a different hospital for your CH condition often results in more unnecessary radiology, scrutiny and raised eyebrows from medical staff, than actual real help.

Many here will be familiar with the 4-5 hour ER wait, the comments from nursing staff about "headache..." sideways looks and and being summarily ejected into the street with a half-assed, half page report and 2 Panadeine Forte, if you're lucky.

If you go to hospital, you may wish to re-iterate or prove that you are not a "drug-seeker".
Your file will reflect your status, if you carry it with you.
Access to your information is key to your appropriate and timely treatment in ongoing CH management.

Indulge me for a second whilst I "laud my exploits" on this one... smile
I carry my file on paper, but it is like pulling teeth to get anyone to read any of it.
My hospital file is now so thick, it is an occupational health and safety hazard for staff to lift it. It has been broken into 3 volumes, lest it should require a forklift and licensed operator to simply obtain and read my last report.

I carry about a ream of files with me at all times, so I can provide any documentation as required. It's a bitch to sift through with a sore head before every hospital or GP consult and enough to send you looking for back pain treatment after carrying it on the bus.

Imagine every narky Pharmacist being promptly made aware of your situation by having access to your own Medicare file, able to view your letters from specialists, saying "Hand over the medication, buddy!" No more excuses or arguments from them...

Or making available recent information on your medications so a Pharmacist may review your medications for drug interactions, not just on their system, but by reviewing your medical file itself.

Imagine every "stand-in" GP, or Locum having your condition explained in great detail at the press of a button, not by you or wikipedia, but by your specialist reports contained in your file.

Imagine every specialist being able to see exactly what you have been taking, and for how long. What scans you've had done in other hospital departments, or other appointments. No more repeating wait lists for treatments you've already done.
Access to what your GP wrote last week.
Whatever will help you.

I understand the "Big Brother is watching" cynicism about collecting personal information and expect many will reject the idea right here, point blank.
If you are reading this or anything else online, doing any banking, shopping, using an app, or making a telephone call, whether you realise it or not, you are already having information about you collected.

Reality is, in Australia, if you have had a pathology test, your record of it sits in isolation on IMVS or Clinpath, or Gribbles server, should your consulting Doctor choose to read it.

A record of any prescription medication you have been issued with sits in isolation on a PBS server somewhere, there for your Doctor or Pharmacist to access it, if he/she could.

(Chemists have been using software to collect and match medication purchasing data to catch bulk purchasing of Pseudoephedrine (a precursor to Methamphetamine manufacture) for over 10 years now. Why not use the Pharmacist's software that is already in place for good patient outcomes too? - A question I have been asking of them and an idea I have been pushing for a long time...)

The findings from any CT, MRI, X-Ray, or Ultrasound report sit on a Radiologists server, probably going unseen, unless Doctors have access to it.

Reports from specialists sit in hospital filing cabinets and are inaccessible to unknown GPs, Pharmacists and anyone else you may wish to provide them to in supporting your case for CH treatment.

You can't spend a dollar of yours or the Government's money on your healthcare in Australia without somewhere generating a paper trail or digital footprint.

Information about your medical situation is already being recorded, everywhere.

It's already here, so why not turn it to your advantage?

Medicare have finally connected the dots.
It seems Medicare have made some attempt to centralise the information already collected about you and your condition(s).

Medicare call it "eHealth records", where a patient can access their data anywhere, anytime. Together with hospital bedside computers and a few smartphones, I see a lot of GPs, specialists and nursing staff in future, being "tuned in" on CH faster than ever before in the history of the condition.

Medicare eHealth records home page:
http://publiclearning.ehealth.gov.au/consumer/

An example of how it may help chronic patients, like CHers:
http://publiclearning.ehealth.gov.au/consumer/what-will-it-mean-for
-me/patient-journeys/chronic-care-patients/


Cheers, Ben.


Posted in US Supreme Court unanimously rules that genes extracted from the human body are not eligible to be patented. on 15 Jun, 2013 - 1:11 pm

Gene patent finding could impact Australia

Friday, 14 June 2013 Stephen Pincock and wires
ABC/Reuters

http://www.abc.net.au/reslib/201306/r1129863_13913039.jpg

Gene ruling: US court rules that naturally occurring genes cannot be patented, but synthetically produced genetic material can be patented

A US court's decision that naturally occurring genes cannot be patented could have an impact on a similar case in Australia.

Overnight, the US Supreme Court unanimously ruled that genes extracted from the human body were not eligible to be patented.

But the court said legal protections could be retained on synthetically produced genetic material, when these molecules are "not naturally occurring."

The ruling by the nine justices, the first of its kind for the top US court, also allows the possibility of patents for applications of genetic knowledge such as treatments and tests.

The court's ruling came in a challenge launched by medical researchers and others to seven patents owned by or licensed to biotechnology company Myriad Genetics on two genes linked to breast and ovarian cancer, called BRCA1 and BRCA2.

The decision comes five weeks before Australian Federal Court judges are due to consider an appeal against a ruling that upheld the ability to patent human genes, handed down in February.

Bill Madden, an adjunct fellow at the University of Western Sydney, and a lawyer with Slater & Gordon Limited, says the Australian court would study the US decision carefully.

"When you get to these fairly esoteric legal issues, there's no doubt that the superior courts in different countries look at each other to see how they've grappled with things," says Madden.

"That doesn't mean that they always come to the same conclusion but it would be pretty surprising if the full Federal Court wasn't given a copy of the Supreme Court decision and asked to read it."

Australian opponents of gene patenting hope the Federal Court will echo the findings of its US counterpart.

"The whole concept of the patentability of human genes does not make sense," says Professor Graeme Suthers, a spokesman for the Royal College of Pathologists of Australia.

"If the Australian Federal Court failed to echo the decision from the US we think that would be an unfortunate decision."

Professor Ian Olver, CEO of Cancer Council Australia, agrees. "We think it's a good ruling," he says.

"The Australian appeal is about whether an isolated gene is patentable. The Americans have made it very clear that it isn't," says Olver.

"We'd like to see a decision in line with that and legislation to change the patent act so that genes, whether in the body or isolated, aren't patentable here."
Natural v synthetic

Dr Luigi Palombi, an expert on biotechnology patents from the Australian National University, says the US ruling hinges on a decision that isolating a human gene or part of a human gene is not an act of invention.

On the other hand, DNA sequences produced in laboratories could be patentable, "provided that the information contained in it is not identical to what exists in nature," he says.

These synthetic DNA sequences include so-called cDNA -- the "c" stands for "complementary" -- which are edited forms of a gene, with extraneous stretches excised.

In a statement, Myriad Genetics president and CEO Peter Meldrum says: "the Court appropriately upheld our claims on cDNA, and underscored the patent eligibility of our method claims, ensuring strong intellectual property protection for our BRACAnalysis test moving forward."

Retaining the possibility of patenting synthetic DNA means the Supreme Court decision is not a setback for the biotech industry, say US experts.

"There are literally tens of thousands of patents claiming DNA that we would not consider to be a product of nature," and which therefore are fine according to the US Supreme Court's decision, says Gregory Graff, a professor at Colorado State University, who led an analysis of gene patents published last month in Nature Biotechnology.
Impact on women

The ruling also makes it clear that US scientists working with genetic material are not at risk of being sued for patent infringement, says Palombi.

"American companies and universities are [now] free to use the genetic material to come up with new inventions. That might be a new diagnostic test, or a medicine of some kind."

Palombi says the test would also improve BRCA testing for American women as more labs would be able to test for mutations in the gene, and the price of testing was likely to drop significantly.

"A number of companies have already announced that they are going to be bringing out their own version of the test in the United States," he says.

In Australia, BRCA testing is already provided by a number of laboratories. After a public pressure, the company that has an exclusive licence from Myriad Genetics, Genetic Technologies, decided not to enforce its patent rights over the genes.
Unforseen consequences

But not all scientists welcome the decision.

Dr Julian Clark, head of business development at the Walter and Eliza Hall Institute, says the ruling could have negative impacts.

"I think the ruling is quite profound, with unforseen consequences...for the patent system," Clark says.

He argues patent protection is vital to ensure private companies help commercialise scientific work and bring it to the public. Tampering with patent law is not needed to ensure equity of access or pricing of tests, he says.

"I do not for one minute think that this will improve equity of access for the test in the US or anywhere else. I fundamentally disagree that changing the patent system is the solution."

Nor would removing patent protection on genes hamper medical research, he said. "It's absolute nonsense that patents hinder research. I've been in this game for decades and I've never, ever seen that happen."

Source: http://www.abc.net.au/science/articles/2013/06/14/3782026.htm#.UbvX
S9jhfZY


Posted in Batch's anti-inflammatory regimen for CH on 14 Jun, 2013 - 1:39 pm

Hi to all,

I saw my specialist in mid-May and he kindly put a safety floor under me and my regimen experiment, in the form of a full pathology work up and some serum Calcium tests.
We are on the lookout of Hypercalcemia, a side-effect of too much D3, just in case I'm "overdoing" the D3 supplements. I have none of the hallmarks of Hypercalcemia, but remain vigilant, nonetheless. I have a list of things to look out for, just in case.

Results from mid-May showed that I have reached my upper limit of serum Calcium. So, I dropped my Calcium intake from diet a bit, which has been huge and I also dropped the regimen D3 component back from 15,000IU of D3 per day (really a loading dose to get my levels up there) back to 10,000IU per day, a holding dose.
As long as ongoing pathology shows I am OK, I will hold at this D3 dose.

I'm not really prepared to go any lower and risk return of CH attacks.
So long as my tests remain OK, I will stay on the regimen, at 10,000IU D3 daily. Been holding there for over a week now, still no sign of CH attacks.

I've just yesterday had a repeat 25(OH)D serum test and again Calcium level. That will be my peak Calcium, as I have dropped intake considerably and now on the other side of that pathology test, reintroduced K2 MK7, to see if any of it's alleged serum Calcium redirection will show up on any pathology test, as I can locate minimal science or trials on K2 MK7. It's one big experiment, but which CH drugs are not?

When I get my next results I will post (25(OH)D in nmol/l) showing where exactly I am on the D3 response graph, as seen in the first post on this thread and my serum calcium too.
We are monitoring safety closely.

As for evidence of this working...
My three D3 burn downs are the closest thing I have for evidence that this works. After all, in CH diagnosis, the only way to diagnose or to establish CH status is by taking down what a patient reports; the detailed oral patient history.

I can report that I am pain free and have not used Imigran in over one month. I am taking no other preventive medication.

Each time I have withdrawn the regimen, my CH has resumed.
This is not some D3 rebound either, as the levels drop straight off and I hit the Imigran if required. But this burn down procedure is not required anymore, I've done enough repeats to prove the validity of the experiment for me.
I am staying on 10,000IU of D3 per day.
There is still tweaking to do.
I must try to remain pain free and also within desirable pathology limits.

It's nice to have Batch there to answer my somewhat uneducated questions.
Nice to have my specialist there to underpin safety, check the biomarkers and offer some supervision.
Nice to have a GP on board who, whilst he cannot officially endorse my D3 dosing, is now not outwardly dismissive of it, having seen my results in CH.

All my supervising practitioners have seen me battle through all the drug trials and CH for many years in an otherwise resistant and intractable case. They can see just by looking at me, that my quality of life has improved tenfold.
This has their attention. People are coming around to the idea.

An unlikely alliance is forming here, to achieve a common goal - pain free status and to get it out to CHers, if appropriate for them to try it.

There is still very much going on behind the scenes with this that I will not yet mention here, but I will keep the site updated as developments continue.
It's very exciting, indeed.

Cheers, Ben.


Posted in Hi all on 10 Jun, 2013 - 11:48 pm

Hi Toddy,

If you need any help locating or discussing medications, or specialists in your area, drop me a post here, or a PM anytime. I will help find access to treatments and relief, if and where I can
Always glad to help.

Cheers, Ben.


Posted in Once a month vaccination against CH - Antibody targets CGRP release on 09 Jun, 2013 - 7:57 pm

Hi Peter smile

Good to see you again and so happy too, getting out into that Russian sunshine must be boosting those D3 levels! icon

Thanks for the correction mate.
Perhaps I should have used the term "Vaccine", as it appears that "Vaccination" is a process of administration;

From the good folks at Wiki:

A "vaccine" is a biological preparation that improves immunity to a particular disease. A vaccine typically contains an agent that resembles a disease-causing microorganism, and is often made from weakened or killed forms of the microbe, its toxins or one of its surface proteins. The agent stimulates the body's immune system to recognize the agent as foreign, destroy it, and "remember" it, so that the immune system can more easily recognize and destroy any of these microorganisms that it later encounters.as

"Vaccination" is the administration of antigenic material (a vaccine) to stimulate an individual's immune system to develop adaptive immunity to a pathogen.
-------------------------------------------------------------------------------------------

"Vaccination" is also the terminology used by Professor Paul Rolan when he first described and alerted me to the existence of this research, whilst I was in a consultation with him last month.

You've got access to his resume and his email Peter. He's a lecturer at Adelaide University's School of Medicines. I'm sure the Prof would be more than happy to explain medical terminologies all day. But he's usually quite busy pioneering Headache research and I find, can be a very hard man to catch...

Cheers, Ben.

Sorry, mistakenly pressed edit, but post is unchanged as of
"This post was edited on 09/06/2013 at 7:58 pm"


Posted in Once a month vaccination against CH - Antibody targets CGRP release on 09 Jun, 2013 - 12:40 am

Hi to all,

Most will have seen this post before, sorry about that.
In opening up an area where users can post on any news and new research, procedures, developments, or a hot tip from your specialist that may help eventually to establish causes for CH, I thought I would shift this post here.

This area is for anything new and is for hardcore science, so the newbies can check it out if they want, but won't be scared off by it! smile

As previously posted:

CH and Migraine share a common therapeutic target; Calcitonin gene-related peptide, or CGRP release. For years now researchers have known this and have been working on CGRP receptor antagonist medications. Most medications aimed at CGRP release fell over at Phase 3 trials, due to a bad side-effect profile and liver complications in the trial participants. But the therapeutic target, CGRP was validated.

This new research has discovered an antibody that inhibits CGRP release. It offers hope of a once a month injection of the antibody, that will stop CGRP release before it starts. I'm not up on the science yet, but I have it on good authority, that previous CGRP receptor antagonists left people feeling really groggy due to the active substance(s) in CGRP receptor antagonist drugs crossing the blood-brain barrier.

This antibody apparently does not cross the blood-brain barrier, it proposes to work on a systemic level.
CGRP is produced in both peripheral and central neurons.
http://en.wikipedia.org/wiki/Calcitonin_gene-related_peptide
http://www.ncbi.nlm.nih.gov/pubmed/6346105

I presume CGRP release need not be targeted specifically in the brain. I have much learning to do and will follow this closely and keep the site updated.

I await "spill over" from Migraine research (as with Imigran) so we can access it. I am privileged to have an active Migraine researcher as my headache specialist, when appropriate, we will seek ethical and regulatory approvals for use in CH. When the time is right, I will gladly pull the regimen and roll up my sleeve - here we go again...

First doses have been administered to humans in a proof-of-concept Phase 2 trial.

This is the best news I've heard in years.

Cheers, Ben.

http://www.prnewswire.com/news-releases/alder-biopharmaceuticals-in
c-initiates-phase-1-clinical-study-of-antibody-therapeutic-candidate-f
or-treatment-of-migraine-ald403-150406395.html


Alder BioPharmaceuticals Inc. Initiates Phase 1 Clinical Study of Antibody Therapeutic Candidate for Treatment of Migraine, ALD403

Therapeutic Targets Well-Validated Biology through Inhibition of Calcitonin Gene-Related Peptide (CGRP)

Alder BioPharmaceuticals Inc. today announced the initiation of a Phase 1 clinical study of its antibody therapeutic candidate, ALD403, targeting the calcitonin gene-related peptide (CGRP) for treatment of migraine.

The placebo-controlled, single ascending-dose study will evaluate the safety and tolerability of ALD403 administered via both intravenous infusion and subcutaneous injection. Healthy volunteers will be enrolled in the study and followed for 12 weeks following the treatment. In addition to the primary endpoints of safety and tolerability of the two formulations of ALD403, the study will also evaluate the pharmacokinetic and pharmacodynamic profiles of the treatment in the healthy volunteers.

"There is a significant need in patients who experience migraines on a routine basis to have a convenient treatment that can prevent the migraine before it starts," said Randall Schatzman , Ph.D., president and chief executive officer of Alder BioPharmaceuticals. "We see distinct promise in ALD403 to meet this need given its potency and specificity for CGRP, which has been established as a validated target in migraine. ALD403 is manufactured with our Mab Xpress technology which allows us to mass produce the antibody for large markets, such as migraine and to rapidly achieve proof of concept.

Research has shown that CGRP has a role as a trigger for migraine attacks, and inhibiting the peptide has demonstrated promise in preventing the onset of migraines. ALD403 is expected to be developed for patients experiencing multiple migraines per month with self-administered infrequent dosing.

Alder's core technology enables the production of antibodies in very high quantities with improved cost structure via their Mab Xpress technology, allowing this class of therapeutics to enter disease areas that have previously been inaccessible for antibodies, such as migraine and cardiovascular disease. Proof of concept for this technology was achieved with ALD518, a monoclonal antibody to the pro-inflammatory cytokine IL-6, which is currently under Phase 2 development by Bristol-Myers Squibb for autoimmune diseases (BMS-945429), while Alder is developing the antibody for cancer-related conditions.

About Alder BioPharmaceuticals

Alder BioPharmaceuticals Inc. uniquely identifies, develops and manufactures novel antibody therapeutics to alleviate human suffering in cancer, pain, cardiovascular and autoimmune and inflammatory disease areas. The company's investigational monoclonal antibody for migraine, ALD403, inhibits a well-validated molecule shown to trigger migraine attacks, calcitonin gene-related peptide (CGRP), and is now in clinical trials. ALD518 is Alder's investigational monoclonal antibody to the pro-inflammatory cytokine IL-6. Alder is developing ALD518 in Phase 2 clinical studies in multiple cancer-related conditions, while Bristol-Myers Squibb is investigating the asset (as BMS-945429) in a Phase 2b clinical study in rheumatoid arthritis and other autoimmune indications based on a 2009 partnership. Alder's management team combines decades of industry experience with a proven track record for identifying and developing novel antibody therapeutics and enabling partners through the out-licensing of its technologies. For more information, visit www.alderbio.com.

First dosing: http://www.redorbit.com/news/health/1112807086/first-patients-dosed
-in-proofofconcept-clinical-study-of-alder-biopharmaceuticals/


First Patients Dosed in Proof-of-Concept Clinical Study of Alder Biopharmaceuticals’ Lead Therapeutic Candidate for Treatment of Migraine, ALD403

Company that Discovered and Developed Clazakizumab, Previously Known as ALD518, Advances New Program into Phase 2 Study

BOTHELL, Wash., March 20, 2013 /PRNewswire/ — Alder Biopharmaceuticals Inc. today announced the dosing of the first patients in a proof-of-concept Phase 2 clinical study of its antibody therapeutic candidate, ALD403, targeting calcitonin gene-related peptide (CGRP) for treatment of migraine.

The double-blind, placebo-controlled, randomized study will evaluate the safety and efficacy of ALD403 administered monthly. One hundred and sixty patients with frequent, episodic migraines will be enrolled in the study across six sites for six months. Patients in the study will have experienced between four and 14 migraines per month in at least three months prior to enrollment and take acute migraine medication.

“Despite the enormous progress made in acute treatments for migraine, substantial unmet needs remain for patients experiencing multiple migraines per month,” said Richard Lipton, M.D., principal investigator, professor of neurology and epidemiology at Albert Einstein College of Medicine in Bronx, New York, and director of the Montefiore Headache Center. “Most currently available preventive treatments for migraine are taken on a daily basis, reduce migraine frequency by 50 percent in about half of users and often produce significant side effects. A biologic targeting CGRP and offering higher rates of efficacy, along with less frequent dosing and fewer side effects, could have a tremendous benefit for patients.”

Added Randall Schatzman, Ph.D., president and chief executive officer of Alder Biopharmaceuticals, “Alder is changing the paradigm for the treatment of migraine from abortive care at the time of migraine onset to a preventative approach, and our team has developed a highly specific therapeutic candidate with the potential to prevent the disorder before it begins that we believe has the ability to make a large impact in migraine. This preventative approach has been welcomed by patients, evidenced by the significant patient interest at all of our trial sites, and we are proud to advance ALD403 into a proof-of-concept trial while exploring additional applications for our core technologies with therapeutic candidates in other disease areas.”

Research has shown that CGRP has a role as a trigger for migraine attacks, and inhibiting the peptide has demonstrated promise in preventing the onset of migraines. ALD403 is expected to be developed for patients experiencing multiple migraines per month with self-administered infrequent dosing.

Alder’s core technology enables the production of antibodies in very high quantities via its Mab Xpress technology, allowing this class of therapeutics to enter disease areas that have previously been inaccessible for antibodies, such as migraine and cardiovascular disease. Proof of concept for this technology was achieved with clazakizumab, previously known as ALD518, a monoclonal antibody to the pro-inflammatory cytokine IL-6, which is currently under Phase 2 development by Bristol-Myers Squibb for autoimmune diseases (BMS-945429), while Alder is developing the antibody for cancer-related conditions.

About Alder Biopharmaceuticals

Alder Biopharmaceuticals Inc. uniquely identifies, develops and manufactures novel antibody therapeutics to alleviate human suffering in cancer, pain, cardiovascular and autoimmune and inflammatory disease areas. The company’s second therapeutic program, an investigational monoclonal antibody for migraine, ALD403, inhibits a well-validated molecule shown to trigger migraine attacks, calcitonin gene-related peptide (CGRP), and is now in clinical trials. Clazakizumab, previously known as ALD518, is Alder’s investigational monoclonal antibody to the pro-inflammatory cytokine IL-6. Alder is developing clazakizumab in Phase 2 clinical studies in multiple cancer-related conditions, while Bristol-Myers Squibb is investigating the asset (as BMS-945429) in a Phase 2b clinical study in rheumatoid arthritis and other autoimmune indications based on a 2009 partnership. Alder’s management team combines decades of industry experience with a proven track record for identifying and developing novel antibody therapeutics and enabling partners through the out-licensing of its technologies. For more information, visit www.alderbio.com.


Posted in New here. on 07 Jun, 2013 - 10:45 pm

Hi Fordie,

Sorry you had to find the site.
Yes, it's very debilitating indeed, I hear you...
You just missed out on the creation of a "new members area" by mere minutes!
However, you're in the right place.

Sumatriptan is one of the areas/drugs I work on a lot.
The Aspen one is a generic (just got it myself, but have not tried it yet).
It takes about 10 minutes longer to work than Imigran (FDT), (same drug, just Fast Dispersion Tablet). Faster onset is better with Triptans, so Imigran FDT will save you 10 minutes of hell...

Your GP can do what is called a Regulation 24 prescription for this drug.
This means you can receive a script for a box of 4 X tablets, with 5 repeats, dispensed at pharmacy all in one go. 24 tablets in one consult/pharmacy visit.
That should save some dramas and some dollars.

I hope you have referral for specialist care and that your GP is going in to bat for you.
You may need a preventive drug, rather than leaning on the Sumatriptan (Sumagran) for any length of time beyond a month or two.

Your Chemist is right, you are meant to wait until onset of attack.
It is an abortive drug, for use per-attack.
Your Doctor is offering relief, I'm sure, but is incorrect in suggesting that you should take one before bed. Taking one before bed is to use it as a preventive.
I know this will get many out of a tight spot for a while and many do it, but it's not best practice. The pills only last about 60-90 minutes before total plasma clearance (Drug is no longer in the blood and has been excreted through urine production, sweat etc).
So for the rest of the night, you are still open to CH attack.

You also run the risk of rebound attack.
If you take one every night before bed, you may well set yourself up for a nightly attack, a few hours after going to sleep, as the drug wears off.
The literature on the drug shows this.

I don't do the best meet & greet and I've been told I'm too technical, so sorry if I've overloaded you here.
I will do my best to help.

Any questions, plug away here, or drop me a PM.
Site members may be able to help you and your GP locate a preventive drug, success rate on that approach is about 90% in episodic CH, so there's hope there yet!

Cheers, Ben.


Posted in An Audience with Bill Gates on 29 May, 2013 - 2:17 pm

Hi to all,

I caught this last night.
It was on free to air television, but I would have gladly paid to be in this room last night.
Inspiring indeed.

Never a big fan of Bill or his Software, I came away feeling somewhat converted.
This man holds in his hand, perhaps the ability to conquer CH, should he choose.
As he outlines in this interview, only the best medical scientists get funding from the Bill & Melinda Gates Foundation.

To my knowledge, as shown on a research website here, Pr Rolan and co, attracted $500,000 of this funding into headache research, right here on North Terrace, Adelaide.

Here's a link to the "Access to Medicine Index" he mentions:
http://www.accesstomedicineindex.org/

The interview, I think is inspiring stuff, with CH in mind...

You be the judge:

http://www.abc.net.au/tv/qanda/txt/s3761763.htm

Cheers, Ben.


Posted in How to split an Imigran injection on 29 May, 2013 - 7:33 am

Not suggesting anyone try this, but many have to...
This man's face says everything. He's clearly doing what works for him...
http://www.youtube.com/watch?v=iVWa9Lqf8jE

Cheers, Ben.


Posted in Could this be what will helps us ? on 29 May, 2013 - 7:03 am

Link fixed.

The Shevel technique:
http://www.youtube.com/watch?v=E2AMidVLcGg

http://en.wikipedia.org/wiki/Elliot_Shevel
http://en.wikipedia.org/wiki/Elliot_Shevel#Arterial_surgery_for_mig
raine_.E2.80.93_The_Shevel_Procedure


Cheers, Ben.


Posted in One more gene, research funding and Presenteeism on 27 May, 2013 - 7:48 pm

OK Peter.

I have a lot of respect for your opinion, as you know.
You have better command of the English language than I.
Are more articulate than I.
Are more well traveled than I.
Have more life experience than I.
Are more educated than I, and I suspect, are of far superior intellect.

However, I do mix with people far closer to the research than you or I.
Those far more informed, well traveled, experienced and qualified in research matters.
Those that are themselves, custodians of the research.
They have cause for genuine optimism that perhaps can't be seen from where you are standing Peter.
I've seen it.
I'm excited by what I see.

I detect a distinct lack of optimism, actually, I would say palpable defeatism, on your part.
No matter what science offers, it will not satisfy your criterion until someone can point to CH cause on a piece pf paper and say "Look, there it is".
How does this help?

A Doctor can point to a broken toe on an X-ray.
There's the cause of pain.
What can we do about it?
SFA. Throw "band-aid" measures at it, like painkillers.
It's still broken.
Cause in this case, is irrelevant.

We don't know the cause of CH.

Cause and effect does not reveal all in medicine.
We know very little about causes of many conditions, but this has not stopped medicine vastly improving quality of life for patients.

We don't know how general anesthetic works.
We don't even know how Paracetamol works, yet we continue to use it.
We only see effect.

But to satisfy your criteria, we need to identify a "cause".
Clearly a defeatist attitude will help to identify the "cause" of CH...

Therapeutic targets and biomarkers are good enough for 99.9% of the medical research fraternity to achieve successes across many conditions, but still fall well short of your exacting specification.

"A dedicated group of carers owning their own patent as being a win over the drug companies" - wrong.

This is not an adversarial relationship between patient and company, where one "wins" out over the other, but a symbiotic one. A relationship between people seeking common ground and answers to a terrible affliction. The drug company has been commissioned by the patients. The company works for the patients. It's a win-win. (Yes to all cynics, it can happen...) CF patients get their drug, the company makes some cash. CF patients maintain control over their own drug.
I'm not looking for pleasant symmetries here.
But, I suspect your cynicism will find ways to shoot holes in that too.
Tell it to a cured CF patient.

The significance of the Headache research going on in Universities and their attached teaching hospitals, like the one I visit, is being outright underestimated, ignored, if not lost on most here.

In the meantime, I will keep searching, rolling up my sleeve for the trials, studying and trialing the regimen, scouring new studies, catching buses to hospital, trialing medications and generally doing what I do.

When we do find a chink in CH's armour; I trust site users would like to know.

There are a small group of us who define this condition through our actions, not let it define us through inaction and pain alone. This is the group of people with which I wish to work. This is productive. I find real optimism in productivity working toward a common goal - Pain free status.

If this site has turned into "club have-a whinge"; I would just as soon not be a part that aspect.

I will keep those updated who are interested in research going on, right here, right now.

If my CH coping mechanism is to maintain genuine hope, who has the right to question that?

One thing I am more experienced with Peter, is finding genuine reason for optimism in a bad condition. I have had a lifetime of practice.

I'm not going to blow a fuse this time.
With CH firmly in my sights, I'm off to walk the walk and leave the talk to others.

If anyone requires practical, timely and localised assistance in clearing PBS, Medicare hurdles, locating practitioners, medications, pharmacists or anything else I can help with, feel free to PM me. I will help where I can.

Signing off for a while.
Cheers, Ben.

Pain free days to all.


Posted in One more gene, research funding and Presenteeism on 26 May, 2013 - 9:07 pm

Peter, you know I'm a cynic too.
Perhaps your cynicism has got the better of you this time mate.

We're not worth our own medication. In some cases this is true.
Cessation of Cafergot manufacture is a particularly frustrating example and confirmation of that statement.
Apparently, it would cost more than we're worth as a market to repair a machine for the manufacturer of Cafergot to resume production. That research is done, efficacy established. No R&D cost there, just a broken machine no-one wants to tool up to replace. So we go without Cafergot...a drug that is used in Migraine too.
We must be a small market indeed?

Gathering CHers for the "Gold standard" - randomized, double-blinded, placebo-controlled clinical trials is difficult to say the least. In a true trial of this design, all preventives must be abandoned or withdrawn, washout periods observed, and bailout medications made unavailable to study participants.

This is a cruel, if not unethical procedure in a chronic disease with our severity.
This is why I use the one-man model, I can bailout with Imigran anytime I like.
It ruins the validity of the data, albeit temporarily, but it keeps my head screwed on in the more difficult trials, or "not tolerated" drugs.

This presents a problem to would be suitors of said research funding.
Reliable and well designed trials are more likely to attract funding, as taking a drug all the way from study to market is a 1 Billion dollar process and investors want returns.

This is where we CHers must make the best of a bad situation and look to Migraine research that is being carried out.
Different condition you say?
We share common goals and therapeutic targets, like CGRP release.

"In CH; a condition of no known origin, one must remain open-minded." - Pr Rolan, 2013.

We're getting good bang for buck in Migraine research elsewhere.
Pr Rolan and team do amazing things with relatively small amounts of money.
I can show you a massive protracted US government funded research project that cost the US half a billion and 5 years, for ZERO outcome. Money is not the be all and end all, efficient use of monies in research does play a role.

On their own, government investment figures are bloody scary.
But the government research figures do not reflect input from The Bill & Melinda gates foundation, or philanthropic groups like them, or money invested by private enterprise in researching to win the race to market for the next drug.

Private investment in research is not clearly declared and far outstrips any government funding into headache research. So a lot of pissed off people here are not looking at the bigger picture.

"Spill over" from Migraine research has provided 90% of the drugs we do have for CH.
When was the last time you leaned on Imigran?
That was the last time you benefited directly from "non-CH" research, specifically Migraine research.
Bet that got you through the night...

The race to market for Migraine treatments is blazing away.
Whilst others bitch and moan about their CH and make loud, but nonetheless important distinctions between their condition, pain levels and those of other headache conditions like Migraine, I prefer to focus on what the 2 conditions share in common. Something I learned from the researchers.

More people suffer from Migraine than any other headache condition.
More days are measured in lost "productivity", through absenteeism, or even presenteeism, where you show up for work off your face and essentially remain useless and unproductive. Something I did for 15 years.
This productivity loss from Migraine has attracted attention from big business and with it; research funding into headache conditions!
More than we could ever hope for in CH...

Migraine research is where the dollars are - fact.
It may well be a shared gene that shows up in Migraine research that will ultimately become the next therapeutic target that then goes on to benefit CHers.

You want Science to find the cause of CH, Peter?
You say this all the time. We need to look under every rock.
We need not necessarily a cause, or a cure, but therapeutic targets.

I'm no geneticist and have very limited understanding.
But I do know that Genetic research offers a niche in the armor of disease.
Migraine research is using identified genes as therapeutic targets, by studying genetic prevalence of hereditary genes carried within families and much more.
Crossing off, or identifying genes helps locate therapeutic targets for headache research.

Medicine used to note statistically that people with yellow teeth had a higher risk of developing Lung Cancer, until they looked and discovered the missing factor - the smoking cigarette... They still don't specifically know how cigarettes cause lung cancer - we just know that the overwhelming body of empirical and statistical evidence shows that it is so.

"Would the pharmaceutical companies try to restrict the availability of the natural product to force sell their chemical versions? Surely that couldn't happen. Could it? "

Maybe this will give you some hope Peter.
Not directly in relation to a natural product, but in relation to patient control over substances.

Here is a patient group that paid for research, identified a therapeutic target (a gene) and now own the patent on their own drug.

Cystic Fibrosis patient power is an example here.
Previously incurable, patients and their supporters took matters into their own hands.
Rather than raise a few grand for a nebuliser for a sick kid in every local town charity drive, Cystic Fibrosis patients pooled their resources into one location and funded genetic research into their condition, not knowing what, if anything they would find.

The research identified the target gene that gave rise to the disease in one particular variant of CF (only about 5% of cases). They were able to target this gene located by the research and funding efforts. Patients developed their own drug. CF patient power has now seen patients and supporters commission their own drug.
This is the first drug, ever to be paid for from research, to therapeutic target, to drug design and into production, by the patients themselves.
It is on shelf now.
The patients own the patent on the drug.
It's theirs.
This particular variant of CF will not be seen again. Gone. Cured.
All by patient power.

They did not find the cause of CF, just a gene implicated in the manifestation of symptoms. They did guarantee that nobody will suffer this variant again.

If we had a therapeutic target , i.e; a gene in CH and could get our collective arses into gear, this is the kind of outcome I can dream about in CH.

Does finding the cause really matter so much Peter, if we can wipe out the condition?

"Pain free", one would think, would be a desirable biomarker, if not an indicator of a very successful outcome.

I know a bloke. "Batch", you may have heard of him.
He may have a word or two to say about "hunting out a regime that helps without having truly horrific side effects".
240 people, 81% efficacy and counting...
People won't know if they don't try.

Cheers, Ben.


Posted in One more gene, research funding and Presenteeism on 24 May, 2013 - 2:01 pm

Vermont professor says research is far unfunded, allowing condition's invisibility.

As if migraine weren't bad enough (it can be disabling) or widespread enough (it afflicts nearly one in five Americans), it also comes with a stigma that often renders it invisible.

That's a social stigma that somehow even extends to the medical research community, which largely has overlooked this neurological disease for years — to the public detriment.

So goes the plaint of Robert Shapiro, professor of neurology at the University of Vermont, practicing neurologist and headache specialist.

Shapiro just published a study, based partly on research on a Vermont family with a history of migraines, that identified a gene mutation associated with the condition. It was the eighth gene that's been pinpointed as connected to unusual forms of migraines. Most of the others were found by researchers in Europe, which Shapiro said is way ahead of the United States in this field.

Shapiro is a leading advocate for more funding of migraine and headache research in the U.S.

Migraine is a brain disorder that shows up as a syndrome. In the absence of biomarkers, or physical signs that can be measured, doctors have come up with diagnostic criteria, based on symptoms patients describe. Headache is the best known symptom and one of the most common, but it's possible to have migraine without one. Other common symptoms include nausea and sensitivity to light, sound and touch and aura symptoms.

Shapiro said migraine affects up to 60 million Americans with "enormous disability consequences" and an economic cost of $30 billion a year. Migraine headaches can last from four to 72 hours and vary in intensity.

According to Migraine Research Foundation, about 2 percent of the population suffer from "chronic migraine," that is, migraines that occur 15 days or more a month.

"What happens if you have this problem and can't afford to acknowledge it or you lose your job or you lose your family?" Shapiro said. "Lost work is measured as absenteeism. It's also measured by a condition called presenteeism, when people come to work because they're capable of passing. If you look at the lost work productivity as a consequence of headache disorders, 80 percent is presenteeism. These are people who heroically soldier on, but they're ineffective. They don't have any choice."

Shapiro, is one of only about 400 physicians certified as headache specialists by the United Council for Neurologic Subspecialties.

Individual experience

Migraines, Shapiro said, are "extremely individual, idiosyncratic. What one person experiences is often quite distinctly theirs," and the sufferer's same symptoms tend to recur from one attack to the next.

Infantile colic has been hypothesized to be a form of migraine, Shapiro said. Research tracking people who had colic as infants found a high prevalence of migraines among them in adolescence. The peak age for migraines to appear is late adolescence/early adulthood.

One of the risk factors is heredity — migraine runs in families. Other risks are believed to be environmental or substance exposures. Many medical conditions also increase risk, including hormonal changes (estrogen, for example), obesity, epilepsy, head trauma, sleep and affective disorders.

"Searching for genes is potentially a very productive angle to understanding what causes this brain state and therefore what might lead to potential therapies," Shapiro said.

Shapiro's recent research focused partly on a Vermont family with a history of both of migraine and a rare sleep disorder. Family members had a mutated gene that Shapiro and his colleagues were able to identify and that they suspected might be linked to both conditions. When that mutated gene was implanted in a line of mice, the mice litters exhibited features associated both with migraine and the sleep disorder.

Might this gene discovery lead to development of treatment or prevention?

"We're quite a ways from that. How far away it's hard to say," Shapiro said, "but the advantage here is, this is the first gene among the genes that have been found for migraine that isn't a code for a structural protein ... it's actually a regulator of other proteins."

Just one class of FDA-approved drugs, including sumatriptan, has been developed specifically to treat acute migraine, he said, but medications used for prevention were all developed for other purposes. One reason there aren't more targeted medications, he said, is that most drug development by pharmaceutical companies is sparked by findings of publicly funded research — research that is sorely lacking in the case of migraine.

Advocacy

Six years ago, Shapiro founded Alliance for Headache Disorders Advocacy, a consortium of 12 nonprofit organizations concerned with headache disorders. The aim is to push for policies that will lead to improved treatment — more funding for research from the National Institutes of Health, for example.

That has been a major thrust of an event the alliance has staged in Washington every year, known as Headache on the Hill, which brings doctors, other caregivers and headache sufferers from all around the country to lobby Congress.

"I know a lot of members of Congress have migraine," he said. "You cannot be very public about it." Why? Admitting you have a disabling condition can be "a career-killer." Rep. Michele Bachmann's campaign last year for the Republican presidential nomination, whatever its other challenges, was not enhanced by her acknowledgment that she suffered from migraine.

"I believe there will come a point, hopefully soon, when it will dawn on enough members of Congress where they will realize they can be a hero by pushing on an open door and saying, we have a problem that we can help fix."

Migraine isn't the only neglected condition, he said.

"Cluster headache is a good case in point," he said. "Cluster headache is widely regarded as the most severe pain a human can experience — that's not hyperbole. It has a population prevalence that's approximately the same as multiple sclerosis."

Over the past decade, Shapiro said, NIH has directed $1.872 billion to multiple sclerosis research, which he said is warranted. By contrast, less than $2 million has gone to cluster headaches over the last 25 years. "It's completely invisible," he said.

The advocacy campaign has yet to bear much fruit at NIH. True, funding for headache research rose 26 percent from 2010 to 2012, to $24 million, but that's still less than 0.1 percent of NIH's budget and below what it should be, in Shapiro's mind.

In a phone interview, Linda Porter, pain policy adviser at NIH, pointed to the increase in headache research funding but added that "we totally recognize that headaches need more funding." The challenges are, she said, that NIH budgets have been flat and the headache research community is a small one.

Source and full article: http://www.usatoday.com/story/news/nation/2013/05/16/researcher-unl
ocking-mysteries-migraines/2165363/


Posted in Shadowing on 22 May, 2013 - 9:54 pm

Hi to all,

In response to a few concerns, I started this thread on "shadowing" and will try to include some known science on it. I know "shadowing" is a big problem for many with CH. I live with it quite heavily...

Shadowing

Source: http://en.wikipedia.org/wiki/Cluster_headache
From wiki's Cluster Headache page, re shadowing and CH attacks:

"Some sufferers report preliminary sensations of pain in the general area of attack, often referred to as "shadows", that may warn them an attack is lurking or imminent."

"Some people with extreme headaches of this nature (especially if they are not unilateral) may actually have an ictal headache. Anti-convulsant medications can significantly improve this condition so sufferers should consult a physician about this possibility"

Consider another condition; Epilepsy, which has an "attack" type profile. The literature on Epilepsy uses some terminologies perhaps compatible with CH; in that these terms too, are based around our CH "attack" profiles. Ictal, being the attack phase. Interictal, being between attacks.

I think what CHers on forums commonly refer to as "shadowing", is what the medicos call interictal headache. (By the way, for me, opiates actually work on this type of "interictal" headache.)

Ictal - From Wiki:

http://en.wikipedia.org/wiki/Ictal

"Ictal refers to a physiologic state or event such as a seizure. The word originates from the Latin ictus, meaning a blow or a stroke. In electroencephalography (EEG), the recording during an actual seizure is said to be "ictal". There are four ictal states which include pre-ictal, ictal, post-ictal, and inter-ictal. Pre-ictal refers to the state immediately before the actual seizure, stroke, or headache, though it's recently come to light that some of characteristics of this stage (such as visual auras) are actually the beginnings of the ictal state. Post-ictal refers to the state shortly after the event. Inter-ictal refers to the period between seizures, or convulsions, that are characteristic of an epilepsy disorder."

Perhaps this paper from Cephalalgia Journal best describes interictal headache in CH:

http://cep.sagepub.com/content/30/12/1531.full

Here's the full PDF: http://cep.sagepub.com/content/30/12/1531.full.pdf+html

Interictal pain in cluster headache

Abstract

Introduction: Cluster headache is characterized by severe attacks of unilateral pain, but many patients experience symptoms more commonly associated with migraine such as persistent pain.

Patients and methods: We evaluated cluster headache patients using a questionnaire and chart review to determine clinical characteristics.

Results: Twenty-four of 50 subjects reported interictal pain outside of their acute attacks. Sixteen reported persistent pain more than half the time while in cycle. Unlike acute attacks, this pain was generally mild.

Conclusions: Subjects with persistent interictal pain were more likely to have chronic cluster, allodynia, and suboptimal response to sumatriptan, suggesting that interictal pain in cluster headache may predict a more severe disease process.


Cheers, Ben.


Posted in Wild Krill oil on 22 May, 2013 - 9:29 pm

Good call Leathal,
Wild Krill Oil seems to be the next progression on Fishoil.
I know a few people with arthritic and musculoskeletal problems who say Krill Oil is good stuff. They throw their old fishoil at me!
I'm yet to research application of Krill Oil in CH.

On the site here we have "Batch's anti-inflammatory regimen".
A major part of it is Fishoil, (DHA & EPA) as anti-inflammatories and to help with Vitamin D uptake as a regimen cofactor.

Check it out man!
http://www.clusterheadaches.com.au/forum_posts.php?id=2985&start=0[
/L]


You are onto something for sure.

Cheers, Ben.


Posted in Opioids don't work in CH. on 22 May, 2013 - 5:41 pm

Peter, are you trying to get a rise outta me mate? icon

Yes, I did take the time to read the posts, more than once.
He also took the time to read the studies.
I did note Alex's agreeance, also the state of mind he is experiencing.
I also took the time to re-read Alex's posts from 2011 and get some background as to medication use in his situation.

This is not a one-way street.
The posts as they stand, do not reflect what is going on behind the scenes.
Perhaps not everyone wants to go public with their problems.. Sorry Alex.
I will try to preserve his privacy here, but suffice to say, I am also taking the time via PM to work with Alex to the best of my ability, quite extensively. He remains in contact and has thanked me for my posts and PMs.

When I see someone on the "quick road to nowhere" (Pr Rolan quote, re:opioids in CH treatment) escalating Oxycontin dose, especially in CH, I can't refrain from offering to help. (Maybe I should?) I'm actually in his corner, arguing for Alex's position here.

(Not take the time to read? Jesus. I read 15 hours a day lately, it helps many. My inbox and the many "thankyous" it contains are testament to this, despite my abrasiveness...)

Alex? Care to set the record straight mate?

Medically proven efficacy or not, I defer to the body of known literature on long-term, high dose Opioid use. That is a well known quantity. When "whatever gets you through the night" is scientifically and statistically proven as likely to end up killing you AND I have been asked specifically for help by that patient/medication user who has themselves identified this as a problem, I help; simple.
I'm helping, I can take the flack...

Putting a safety floor under any treatment is vital.
I've seen you draw the line before Peter, on safety in CH treatment.
This is why I work so hard on the regimen and continue to do so.

Also, I am the patient of a specialist dealing in this very precise research area.
CH Pathophysiology, CGRP release, Glial cell attenuation and all issues Opioid.

A bit about the Prof, from a 2006 bio:
"His main research interest is in the development of new compounds for neuropathic pain and how to deal with opioid related hyperalgesia. He also works at the Pain Management Unit at the Royal Adelaide Hospital principally seeing patients with problematic headache."

The Science is moving at a rapid rate, things have changed since 2006.
It is difficult to deal with the "Whatever works for you" mentality, when I have the latest understanding of the mechanics of these clinical trials explained to me, in person, at length, by the best in the business.

Time for me to fess up too, as I have done with Alex via PM.
I still take 6-8 Panadeine Forte per day, mainly for lower back pain.
It never affects my CH, for better or worse.
But it does help to reduce inter-ictal (between attack) head pain (or shadowing, Mick), always has. My point, as per the studies shown above, is that Opioids will never stop CH at Pathogenesis or at any point in the known Pathophysiology of CH itself.
In the meantime, Opioids will do what Opioids do...

Perceived relief is another area entirely.
Check out the Prof's video, "Breaking the Pain Chain", particularly the part on Placebo response as a drug. He addresses ethics around Placebo response.
Few headache and pain clinicians are more ethical than Pr Rolan.
http://blogs.adelaide.edu.au/researchtuesdays/2013/01/11/breaking-t
he-pain-chain/

Placebo response as a drug has been clinically validated and is a useful tool.
Watch for the graphs.

(Before everyone jumps on me about sugar pills and shit here, have a look at the latest use of Placebo response in medicine - it has been validated and is used to great benefit. Throw your outdated, pre-conceived ideas out the door about Placebo response, it is NOT as simple as a sugar pill... Last time I was jumped on about Placebo response, people clearly did not take the time to watch the Prof explain exactly what a clinical Placebo response is.).

I cannot provide full access here, but I wish I could show you all this paper:
Perhaps zoom in (CTRL +) to read it.
http://www.readcube.com/articles/10.1038/clpt.2010.300
Clin Pharmacol Ther. 2011 Feb 16.
The placebo response is part of good medicine.
Rolan P.


So yes, "relief"; be it scientifically proven, or perceived, (as I always say...)
is where you find it.

Who gets to judge?
That leaves me pinned between the horns of a rhetorical dilemma.
You know I can't answer that, Peter.

Mick, "Shadowing" as explained by many throughout CH forums around the world, is a residual head pain, between attacks, or sometimes described as a "phantom attack".
Mostly not worth medicating in itself it can be painful, but many will take shadowing as a sign that they are about to go into a bout, or out of one.
Mainly the territory of the episodic CHer, which I am not, so best left to others for a detailed patient account of shadowing.

Cheers, Ben.


Posted in My 30th Birthday Present, Clusters are back after 5 years!!!! on 22 May, 2013 - 4:12 pm

No worries Mick.

You can ask for the Imigran FDT tablets as well.
You can get a "Regulation 24" script that will allow you to receive all 6 repeats at once, giving you a total 24 Imigran tablets.
I reckon they work better than the nasal spray, but I'm glad you are getting some relief, however you achieve it.
There's always Imigran injection, relief in 5 minutes flat, 96% guaranteed!

GPs may have the drug reps banging on about Maxalt, but as you saw in the graph, Rizatriptan tablet and wafers have almost identical speed of onset.
The wafer is a gimmick...

This triptan is too slow anyway.
I'm repeating myself, sorry mate.

Great to hear!

Cheers, Ben.


Posted in Opioids don't work in CH. on 20 May, 2013 - 11:31 pm

Alex,

You can disagree with me all you like.
Try disagreeing with the guys who conduct the trials and make the drugs.
They have this really nasty habit of knowing exactly what they're talking about, unlike the long line of idiots you must have seen, 30 GPs? Jesus...talk about bashing your head against a wall...I feel apologetic on behalf of the medical profession for you having to suffer so many fools.

Email Goadsby what you've written here, or my specialist Professor Paul Rolan and they will tell you the same thing - Opiods will not stop hypothalamic activation, or the trigeminovascular reflex, or CGRP release.

Now as an experienced drug user I have a few observations to make.
If I were to take your levels of Oxycontin, I could endure hell itself.
The stuff makes anyone feel like superman.
10 foot tall and bulletproof, but very much dosage dependent..
This is what you are doing and you will ultimately pay for it.
You know this.

You know why I wrote this thread?
Because I could tell from your newest posts, where you don't even mention Oxycontin, that you were taking it. It sits between the lines, where it can be read.
Takes one to know one.

Oxycontin is a post-surgical grade pain killer.
I held a 4 spd gearbox up with one arm, whilst I tightened bolts with the other on this stuff. I ripped tendon off bone and did not even notice on Oxycontin.
It can make anyone into superman.

Tramadol is contraindicated for use with Triptans, you may know this.
It's bad news with SSRI, or SNRI drugs too, the science is coming through...
Taking 400mg per day is likely to trigger serotonin syndrome.
The stuff is shooting at the wrong target in CH and is more trouble than it's worth.
I had a hypertensive crisis with tramadol too, at 300mg SR/day, which is an overdose...

Playing semantics with the term "addiction" will not help.
That is a logical and rhetorical debate, that can disappear up it's own ass quite easily.
If you have any concern as you stare into your emptying box of Oxycontin and think to yourself, "Oh shit, I better find more" you have showed a pre-occupation with obtaining supply of said drug - this is addiction.
Ever lost a box of it?
Absolute panic for 5 minutes until it is found.
I bet you know where yours is right now.
Felt it missing from your pocket or bag?
I will bet my left arm it makes you anxious as hell...
Try stopping it cold turkey (which is bad medical advice in itself).
You will find that playing with the English language and medical terminologies like "withdrawal" and "dependency" pale into insignificance and go out the door with you, in search of your next dose.
I speak from experience...

Find the DSM IV or WHO - ICD 10 and read the criteria for "addiction".
I know addiction well. Been there done that, still doing it.
I have very few "ethical" boundaries when it comes to my own drug use, so I tried all the illicit ones too...and suffered the pitfalls...
I still have to grapple with it.

I genuinely challenge any forum member to name a preventative or abortive which is available that I haven't tried.


If you have tried every preventive and abortive known to man, then I must have much to learn... You have had CH for 10 years right?
In 34+ years, I have trialled 70 drugs and there are more to do.
That took some doing, indeed.
If it were not for so many drugs being deemed "Not Tolerated" in a clinical setting, I would never have got through such numbers...

You have not had time to have adequately trialled every known preventive.
It is a mathematical impossibility in your case.
You would need 3 months at least to go through the drill (with chronic CH) to establish initial effect, withdraw the drug (washout periods) and re-introduce the drug to establish and prove definitive efficacy in your CH case.
You need to do the drug, you and your condition justice in a correct drug trial, in order to officially put a line through a drug name.

You need to do this with a headache specialist, closely monitored.
Not all CHers are as lucky as me, to have come across Professor Rolan.
He monitors one-man trials very closely.
I would hardly call borrowing Topamax off a friend with Migraine, a well conducted, or closely monitored drug trial.

As for naming other preventive drugs.
There are ones in the pipeline that I can't even tell you about.
Seriously, some really exciting stuff.
As soon as I can, I will spill the beans, I always share.
So there's hope there yet mate!

Try some from outside Australia. (Specialist imports on "compassionate use" grounds)
If you want Mushrooms, try the ergot-alkaloids again.
They are so molecularly similar to Psilocybin.
DHE nasal spray comes from outside Australia.
Ergotamine can be made into an abortive injection by a compounding pharmacy.
Desril (Methysergide) is a couple of molecules away from LSD...

I don't go to 30 GPs.
I work with a clinical pharmacologist, IHS member, creator of Zolmitriptan and 80 other first-in-human molecular structures in the form of new drugs and a veteran of now over 800 clinical trials. Your Doctors are looking in all the wrong places mate.
There is always something new to try.
Check my posts, i always update the site on new delivery methods.
Patches, catheters, devices, needle-less delivery systems, everything i can find.

Although I have not done a new trial in about 18 months and don't care to, Pr Rolan, on Wednesday last week, had new possibilities for me to try.

There are other modes of delivery for drugs you've already tried.
There are less invasive outpatient procedures you can now try.
There alternatives to medication in CH treatment.

I'll give you one you haven't tried - Batch's regimen.
You can't say it does not work, until you put your ass on the line and try it.

If you've done all preventive drugs, then I'm friggin Mary Poppins...
That is palpable ignorance from your specialists here.
They should scratch harder, ask on Practitioner's forums, like the IHS have.

You threw down the preventive "challenge"...I don't care much for competitive CHing! Haha!
Rattle em off mate, seriously.
Tell me how long you trialed each of them for.
Washout periods, drugs not tolerated, drugs ineffective, drugs repeated, efficacy established, what ever data set you have.

Hopefully I can come up with some you have not tried, or need to re-trial, or even a specialist contact who can throw something right outta left field at you.
I can run it past the Prof too, I'm lucky to know him, indeed.

Repeating a trial in a different clinical environment is something I do as well and it's always an option...

I had a mate who called himself "Chemical boy" after the sheer number of drugs he had consumed. He thought he knew it all. His own intellectual vanity and misplaced pride got in the way of finding an appropriate treatment in a completely different condition. He now credits me with saving his life. Good on him, he did the hard yards, not me. I'm glad he's still here and remains a good mate.
It took a bloody good slap upside his hard head to break through his own ruminations on "addiction" and his "immense drug experience" before I was able to help him.
That was 15 years ago and we are still best mates.

I hope I can help you Alex, before you end up in a bad place.
I'm here to help.

Cheers, Ben.


Posted in Noises during and post c/h attacks on 20 May, 2013 - 4:15 pm

Hey Alex!

You are completely right - CH is not strictly a vascular headache.
Vascular theory is being overturned, but I cannot access the latest Journal articles to back myself here. That's why I have not posted my thread on it, yet.

Imigran as a 5HT1 Serotonin agonist seems to have an as yet unknown mode of action.
Vasoconstriction is a side-effect of Triptans and can be seen.
But more recent studies and fMRI and PET scanning techniques show CH attacks that have occurred without vasodilation and patients that report relief without any seen vasoconstriction.
Go figure!

Check out Goadsby's paper: The vascular theory of migraine—a great story wrecked by the facts.
I know it's Migraine...but focusing research efforts on what the 2 conditions share in common like CGRP release, seems to be a more productive way to look at the research. http://brain.oxfordjournals.org/content/132/1/6.full

More here, specifically relating to CH being non-vascular headache:
http://www.expert-reviews.com/doi/pdf/10.1586/14737175.4.4.563
The references on the end of this paper are a good resource for anyone researching the more recent clinical studies and medical imaging techniques that helped to overturn vascular theory.

As for the seizure idea, I agree entirely.
That so many anti-seizure drugs even get a look-in is telling...
Although not terribly conclusive yet.
Obama's 10 billion to map the human brain (as per the human genome) over the next 10 years may well unlock that secret.

Someone else hears it too!
When I have used particularly Imigran injection, I have a click, click, click sound seemingly coming from around my base of skull, or brainstem area.
I thought it was a nervous system anomaly until someone next to me asked "What's that clicking sound?"
That absolutely blew me away.
I thought it had to be my nerves sending electrical signals, fooling my auditory nerve (or some other complex pathway) into leading me to believe that I was hearing something that was not there.

I never told anyone, ever,.
Then, unprompted, a third party asks me what the sound is! It's actually audible.

It sounds like hot metal cooling down.
An overheated saucepan or stove element contracting.
A hot race car cooling down after a fast drive; brakes, exhaust all contracting as they cool. clank, click, clank etc...

It only happens when relief begins, never before.
Very interesting indeed...
I wonder what it is...

Cheers, Ben.


Posted in 10 Year Anniversary on 20 May, 2013 - 4:04 pm

Thanks Shrek (I will endeavour to dig up your name, pretty sure I remember it. I don't have access to the old account I was using last time, so lost my PMs).

I'm so glad you did not take that the wrong way.
I was harsh.
I had been quite worried about your circumstances.
I know you're strong and that you don't seek sympathy, I suppose I have become accustomed lately to the US based "Woe is me", "Why me" crowd, from which you are obviously not. You are telling it like it is.

If you can tolerate me and what I wrote - that's as harsh as it gets from me.
I'm harsh, I realise.
I'm my own harshest critic.
It gets me out of bed each day - "Mind over mattress".
Severity of attacks can get me down mate, but I did not get this far by ultimately caving in under the severe duress of chronic CH pain.
I have had decades and still have days, even weeks, or months like you describe above.
I try not to post when I'm like that, but sometimes I just spill my guts on how I feel about stuff... To my great surprise, many people around me thank me for just being me.
It's brutal honesty, brutal being the operative word in that sentence, but it's still "The world, according to Ben..." nonetheless...
I wish I could say I'm sorry, but I won't go back on what I said.
I tell people what I think, not what I think they want to hear.
I'm acutely aware of that and I have been quite concerned awaiting your response.
It's hard for me to try to be so "good" all the time, but I do my best, which is all one can really ask for.

I will be glad to help in any way I can.
With practice, I'm getting better at that.

I hope you're holding up OK under the circumstances.
PM away!

Cheers, Ben.


Posted in Opioids don't work in CH. on 19 May, 2013 - 7:05 pm

Hi to all,

There is a phrase used often here - "Whatever works for you".
Any of us will take CH relief where we can get it.
Barry once said something here along the lines of this - if he had to stand on his head in a cow pat, snorting sarsaparilla through a straw up one nostril for CH relief, he would do it. I understand the desperation for relief.

One perception I encounter almost daily from both Practitioners and CH patients alike, is the idea that somehow Opioids will help CH.
The sheer volume of prescription Opioid medications issued for CHers is indicative of patients' misplaced belief in Opioid efficacy and a sad indictment of GP education on alleged Opioid efficacy in CH.

Many of the more seasoned CHers will know from both their own experience and from reading medical literature, that Opiates; (raw or refined) or Opioids; (synthetic or derivative) do not help in CH treatment.

Much recent research shows how Opioids may actually worsen pain perception through inducing a "heightened sensitivity" in the way Glial cells attenuate neuropathic pain transmission and pain perception:

A selection of text from the below study as an example:

The “Toll” of Opioid-Induced Glial Activation: Improving the Clinical Efficacy of Opioids by Targeting Glia.

Linda R. Watkins, Mark R. Hutchinson, Kenner C. Rice, and Steven F. Maier.

"Intriguingly, powerful modulatory control exists not only for pain, but also for an organism’s responses to opioids, such as morphine. Opioids not only suppress pain, they also activate endogenous counter-regulatory mechanisms that, for example, actively oppose opioid-induced pain suppression, enhance analgesic tolerance wherein repeated opioids lose their ability to suppress pain, and enhance dependence wherein organisms require continued opioid exposure to stave off drug withdrawal.

The idea that glia contribute to pain has gained widespread support in the past decade. Spinal microglia and astrocytes are activated in every clinically relevant animal model of pain enhancement, including pain arising from trauma-, inflammation- or chemotherapy-induced peripheral nerve damage, bone cancer, spinal cord injury, spinal nerve injury, multiple sclerosis, migraine, radiculopathy, and among others. Comparable results have now been reported for trigeminal pain models as well.

On appropriate stimulation, microglia and astrocytes can each shift from their basal-but-active state to an activated state, characterized by a reactive, proinflammatory response profile. In this state, glia release substances that increase neuronal excitability, leading to pain enhancement."


Source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2783351/

I have ingested nearly every form of Opioid or Opiate; legal, illicit, derivative or synthetic in my drug taking career.
http://en.wikipedia.org/wiki/Opioid
http://en.wikipedia.org/wiki/Opiate

My only personal observation, is that if you take enough of the stuff, you may not give a toss about raging CH, but it's still raging.
Since my first opioid use in 1988, I have ramped up doses and modes of delivery right up to the point of unconsciousness. My CH could never be stopped by any amount of Opioid medication, not for lack of trying... I stopped short of Heroin use. The only thing I have personally injected is Imigran.

This includes:
Raw Opium from Opium Poppies. (Smoked, inhaled)
Codeine itself, or common Codeine based drugs, like:
Panadeine Forte (Codeine) & Mersyndol Forte (Codeine) etc.
Oxcycodone (Oxycontin) IV and various release tablet forms.
Tramadol IV and various release tablet forms.
Morphine IV, administered in hospital for acute Back Injury.

Codeine is a trojan horse delivery system enabling your body to access the substance Morphine. Morphine at best, will increase your indifference to your pain. It will not stop CH from occurring.

This article demonstrates in a clinical environment, why Opioids do not work in CH. One of the main characteristics shared between Migraine and CH conditions is CGRP release. CGRP is possibly the only validated therapeutic target we currently have to aim at in CH research and treatment. Goadsby et. al. has clinically demonstrated that Opioids do not alter CGRP release whatsoever:

Human in vivo evidence for trigeminovascular activation in cluster headache Neuropeptide changes and effects of acute attacks therapies.

by Peter J. Goadsby and Lars Edvinsson

Summary

"Cluster headache is a rare very severe disorder that is clinically well characterized with a relatively poorly understood pathophysiology. In this study patients with episodic cluster headache fulfilling the criteria of the International Headache Society were examined during an acute spontaneous attack of headache to determine the local cranial release of neuropeptides. Blood was sampled from the external jugular vein ipsilateral to the pain before and after treatment of the attack. Samples were assayed for calcitonin gene-related peptide (CGRP), vasoactive intestinal polypeptide (VIP), substance P and neuropeptide Y. Attacks were treated with either oxygen inhalation, sumatriptan or an opiate. Thirteen patients were studied of whom 10 were male and three female. All had well-established typical attacks of cluster headache when blood was sampled. During the attacks external jugular vein blood levels of CGRP and VIP were raised while there was no change in neuropeptide Y or substance P. Calcitonin gene-related peptide levels rose to 110± 7 pmol/l.

Treatment with both oyxgen and subcutaneous sumatriptan reduced the CGRP level to normal, while opiate administration did not alter the peptide levels. These data demonstrate for the first time in vivo human evidence for activation of the trigeminovascular system and the cranial parasympathetic nervous system in an acute attack of cluster headache. Furthermore, it is shown that both oxygen and sumatriptan abort the attacks and terminate activity in the trigeminovascular system."


Source: http://brain.oxfordjournals.org/content/117/3/427.abstract

Show this to your prescribing practitioner, should they insist that Opioids work in CH.

We do know that Opioids have a well established history of addiction, dependency and withdrawal syndromes. Opioids can also be instigators of Opioid analgesic rebound headache, medication overuse headache and may cause headache conditions to worsen in some patients, with continued use.

Cheers, Ben.

Apologies for the double (truncated) post, the site is jerking me around again, no end...


Posted in CH T-shirt on 18 May, 2013 - 3:50 pm

Hi Dan,

Yeah, I saw these shirts too.
They are being sold by Craig Sammon from a UK cluster headache site. Hi Craig!
He says his site was set up with donations from his Mum.
Good on him, I contacted him with some ideas on localising (from experience here) which he used. For my trouble, I had my details publicly listed without the courtesy of an email, or seeking of any permissions. I offered Craig my support and unexpectedly received a rather stern lecture on headache types. Like I would not know the difference...

Seeing as Craig is using Weebly as a website platform, which a friend of mine also uses, the expenses are minimal. It's essentially a free site, with some domain name costs of around $10 to get going for 2 years. Maybe Weebly is different in the UK, but I'm sure it doesn't require fund-raising drives to meet site expenses...

It does make one wonder where any funds raised from these T-shirt sales will go...
Something Craig has neglected to mention on his site (at this date).
Profit from pain? Perhaps...

I'm sure Craig's heart is in the right place, but you don't see Roger flogging stuff here.
I genuinely hope Craig's site goes well, but I remain cynical on the T-shirt sales...

1 in 10-12 Australians suffer from a "rare disease".
It's an epidemic.
What makes us CHers any different?
I understand the frustration of the CHer all too well and the reasons people channel their frustrations into ways to raise awareness.

If someone can tell me how raising CH awareness amongst the general population can be undertaken and how it will will ultimately help CHers, I'm all ears.

Cheers, Ben.


Posted in 10 Year Anniversary on 17 May, 2013 - 9:11 pm

G'day Shrek,

We've spoken before, while you were in hospital you were posting via an iPhone, I believe. Not sure you liked what I had to say, but then again, many don't.
I could say "I don't give a toss" I suppose, but gauging by my actions, my volume of posts and the concern shown in them would indicate otherwise, much to my own surprise...

I feel ya man!
Really do.
I can delete whatever you want Shrek.
Let it stand, I say.
Testament to what you have been through and honest, at that.
I appreciate candid honesty.
You tell it like it is.

Don't get down on yourself about negativity, it was the truth at lunchtime, still is now, will be when you wake up in the morning. But you can do something about it.

The way I see it mate, you have 2 choices:

Get busy living, or get busy dying.

I think you're more like me than you would care to admit.
I've done all that mate, everything in your story, then some.
But as we both know this is totally irrelevant, CH is not a competitive sport.

"Pain" you know well. It is an anatomical manifestation of our disease.
"Suffering" is what we do about pain with our heads.
An important distinction need be made here.
The pain you're in is non-negotiable, finite, intractable.
The suffering you experience, is negotiable; something you can get pro-active about.

The psychology behind "suffering" is negotiable, one needs to have a major shift in thinking, a paradigm shift, a revolution in thought - Metaphorically speaking - A Copernican Inversion.
http://en.wikipedia.org/wiki/Copernican_Revolution_%28metaphor%29[/
L]

I know you can understand this inversion, read between the lines, it's a metaphor.
Then you can turn 10 years of "suffering" to your advantage.

I do not "suffer".
Check my posts for the term, I do not use it in describing my own condition.

I see no other choice for you, than to turn CH to your advantage.
This may seem impossible, even a ridiculous suggestion at first, but it can be done.

I no longer lament my lack of academic achievement.
I learn every day.
I achieve each and every day in helping others right here, doing what I do.
I find sense of purpose in it.

I'm on a disability pension.
I can't work.
I don't get paid for this, nor would I accept anything.

I have a wireless USB internet connection, 5GB/month and a crappy old netbook.
I don't let it stop me.
I spend up to 15 hours a day researching and helping others to navigate CH.
It's not the "career path" I chose.

I was a child prodigy musician, but I can't play on stage anymore, due to CH.
I got over it.
I make guitars now.
I get up, I have an attack, I hit it with Imigran, sometimes it fails, sometimes it works.
I go down like a sack of potatoes every 4-6 hours, then I get back up and keep plugging on.

Attack, sand the wood, attack, read the D3 study, attack, glue the wood, attack, sleep, attack, write some posts, attack, help some people, attack, clamp the wood and so it goes. I have learned every day and when the sun sets, i have progress to show for my efforts.

What other F****N choice do I have?

In the middle there somewhere recently, after over 70 drugs and 34 years of knowing nothing else, I found the regimen. Check it out.
It's an option.

I could say, "Now there. there" like so many will.
If you want "Sympathy", its in the Dictionary, right between Shit and Syphilis.
But I suspect you don't need it, or seek it in the slightest.
Your character has been revealed through CH and you are strong.
The fact that you are still here and telling the truth shows your inner strength.
Sympathy never worked as an abortive drug for me anyway...

Instead, I say "Get in the driver's seat".
Research your condition, know it well.
If you think you know it well, then know it better.
Exhaust all possibilities, then create more.
Know your condition better than any damn specialist you've ever come across.
You know the headaches, they don't.
Leave no stone unturned in your search for relief.
If you hit a brick wall with a drug or a practitioner, seek out alternatives.
Go on a search and destroy mission.
Take a new drug, if it fails, piss it off, get a new one.
Do not rest.
You are the custodian of all the information and equipment you need to find relief.
It is potential, as I see it in your posts, as yet; untapped.
Be relentless in your pursuit of relief.
Don't stop until you find some.

What's the worst that can happen?
You stumble onto some relief, or you die trying.
Beats going out like some sucker on the end of a rope.

In the meantime as you climb the huge mountain that this task is, stop occasionally to enjoy the view. You only get one look.

Cheers, Ben.


Posted in Income protection to cover cluster headache (pre-existing condition) on 17 May, 2013 - 8:13 pm

Belle,

Great news that you are not taking that list.
It does alarm me that the level of supervision is left up to you.
There is a very small margin for error with that pile of scripts.
I hope you have follow up specialist supervision, for when you do get to those scripts.
Being left alone to conduct your own trials, with a set of written instructions is bad practice, you will need safety monitoring and feedback from specialists.
In itself, that list comprises perhaps the worst of the worst drugs for CH.
I've tried them all extensively, except the stematil and the Maxalt.

Maxalon, taken at onset of attack, can reduce Nausea.
I use it quite a bit, but with practice, vomiting becomes less of an issue.

Because I had a highly skilled headache specialist prescribing later on in my drug trialing career, I only had to try one Triptan - Imigran (Sumatriptan).
It works for me and most CHers.
It is the fastest acting of the Triptan group, though the nasal spray only comes in 2 packs, so you may have trouble getting supply and it can get expensive too.
I didn't think much of the nasal spray to tell you the truth.

Give me an Imigran FDT tablet and 25-35 minutes and I'm pain free.
Give me an Imigran injection and it begins to work in 5 minutes flat.
Without it, my attacks go on for 3 hours.

The speed of CH onset in my case will determine severity, which in turn will determine which mode of delivery I choose when using Imigran.

If I have an attack jerking me around for 5-10 minutes, this is slow onset and usually indicates that severity will be 6 or under. Tablets, washed down with a strong, hot coffee are good for these attacks.
25-35 minutes of writhing and I'm done.
If I have an instant clanger, that comes on in 30 seconds flat, I know I am headed for force 10 cluster. I whack in an injection, because I know the tablets will be too slow and would not work on that level of severity.

Sometimes I stuff up.
I take a tablet thinking I will get away with it.
Within 5 minutes I know I should have chosen injection, because CH is kickin my ass.
I could chicken out and use injections all the time, but they are difficult to access and I have used 5 in 24hrs before. They cause rebound CH attacks in me, if I use too many.
Triptan use takes patience, practice and experience.
Speed is of the essence.
Faster you get them in, sooner they work.

Sumatriptan is the go for that group called Triptans.
Forget the rest, they are not fast enough in CH attack.
My specialist prescribes Sumatriptan because he knows it is the fastest.
You would think that he may show some bias toward Zolmitriptan, having pioneered it himself. But he is a good headache specialist and pain clinician, so he prescribes what is appropriate for the patient and their condition.

I would hazard a guess here, re: Indocid.
CH is male predominant. I see a lot of females with CH diagnosis being prescribed Indocid. Indocid works absolutely in a female predominant type of headache called Paroxysmal Hemicrainia (PH). Neuros should know, from a cursory glance over the IHS literature, that CH is not likely to respond to Indocid. Based on gender and predominance stats, your Neuro may be testing to see if you have a different headache type.

Are you sure you have CH?
Not doubting you, just your treating practitioner...
Recently I helped a diagnosed female "CHer" to overturn her alleged CH diagnosis, via her Neuro, only to discover that she had Paroxysmal Hemicrania (PH)
Her headaches were a new presentation, since last year.
They had increased in intensity and lasted days, not 15-180mins, as CH does.
She had no real "peaks" in attacks.
Her pain was unilateral and behind the eye.
She had no response to triptans.
She had MS and some bad CT and MRI scans (which CHers don't)
She reported some relief from excessive doses of Nurofen, an anti-inflammatory.
I did not have to be Sherlock Holmes to see that her Neuro had misdiagnosed.
She took my posts and some print offs of a few IHS criteria with her to her Neuro.
He prescribed Indocid.
Her response to Indocid was absolute.
She is pain free. Haven't seen her since!
Great news for her and the site.

PH is very rare. My specialist has been treating complex headache conditions for over 20 years. He has only seen one case of PH and now, so have I.
Correct headache diagnosis is about pattern recognition.
One does not need a great deal of medical expertise to spot a pattern in headache.
Have a peep at the International headache Society's web based application:
http://ihs-classification.org/en/02_klassifikation/02_teil1/03.00.0
0_cluster.html

Particularly at the diagnostic criteria for CH, click on that, click on Paroxysmal Hemicrania, click on any you want!
You should be able to spot your own condition pretty easily, by looking at three factors:
Frequency (How often attacks occur), Severity (Descriptions of pain levels) and Duration (How long headache types last) and peruse the list of criteria too.
You will spot it, then you need to record your specific headache condition in a headache diary.

This is why we use headache diaries.

Have you ever filled one in Belle?
They're fantastic diagnostic tools.
They help practitioners hone in on the exact condition with precision.

There's one here: http://www.nps.org.au/conditions-and-topics/conditions/nervous-syst
em-problems/pain/for-individuals/pain-conditions/headache/for-individu
als/headache-diary


There's a link on the page, so you can download a pdf and print off a few.
When you next start experiencing pain, grab a pencil (rather than stare into a screen, eyes watering) and jot down your data in the columns provided.
Be sure to be vigilant (don't get slack!) and as accurate as you can be.
I know it's hard in a post attack haze... but write down what you can.

A pattern will emerge. Even if you're dead certain you have CH, it is wise to collect data for a while. It can either overturn, or help to confirm or reinforce your diagnosis.
The correct way to differentially diagnose CH is by taking a detailed patient history.
There is no other way, no confirmatory test for CH, you can't see it on a scan, or measure it in pathology testing.
Proof lies solely in the data you collect and arm yourself with.
Also when some smarmy Neuro decides to punch holes in your story - you have armed yourself with the data - knowledge is power, my friend!
Back yourself!
I suspect Medibank (remember them? they started this!) might question your diagnoses later, with their appointed practitioners (with their agenda in hand; to minimise claims...). You will have the data collected and they can't knock you back!
It may just be all the proof you need.
It may be all the proof you have...

Re: O2

Here's a CHers user's guide to O2.
If you drop me a PM, I can put you in touch with Batch, he is one of the leading O2 specialists. He will take you through it, maybe even send you one of his patented regulators, get you onto the right masks, which we don't have yet "O2ptimask" is an evolution on the non-rebreather mask CHers have been using.
Batch will even school you in correct breathing techniques and how to connect it all, via Skype. The guy is a legend, true Gentleman and very helpful.

http://www.ouch-us.org/medications/oxygen/O2_CH_Abortive_v2r7_Final
.pdf


Enough information overload for one day.
Apologies Belle.
My head is full of info, when it's not full of pain!

Cheers, Ben.


Posted in Income protection to cover cluster headache (pre-existing condition) on 17 May, 2013 - 10:12 am

Hi Belle,

Unfortunately we lost our resident O2 expert, Barry T Coles earlier this year, we miss him a lot.

There is still plenty of info on O2 around and not only does Batch do the work on the regimen, he knows a thing or 2 about O2 as well. I'm sure locals will chime in with some O2 usage tips on finding the right mask, regulator and breathing techniques. I'm not an O2 user, so I defer to their expertise on this one. Check out the BTC O2 page and the O2 suppliers register we set up in his honour, tabs are on the left Belle.
Getting the O2 happening is a very good idea.
Hats off to whoever is pursuing this line of inquiry.
Have you trialed O2?
Has it worked for you?

Re: The drugs you have there.
I hope you're not taking them all.
I don't want to scare you, but that's potentially lethal, in some combinations...
Forgive me if I'm telling you stuff you already know here...

I'm not a Doctor and can't venture onto the slippery slope of handing out medical advice, but I do know these drugs well and can encourage you to read the current literature on these drugs and the CMI (Consumer Medical Information) sheets and the more complex PI (Product information) sheets.
They're on the PBS Medicine A-Z listing where you can search for the drug and it's data sheet in alphabetical order, again, a tab on the left. smile
If you look up a drug brand name on wiki, you can then find the active ingredient and search for info on that back on the PBS site.

Imigran nasal spray (Sumatriptan) - Triptan drug group
Maxalt wafer (Rizatriptan) - Triptan drug group.
Do not use these Triptans within 24 hours of eachother.
Never use them as preventives, they are abortive drugs, for use on a per attack basis.
Triptans should not be used with Ergots.
Triptans should not be used with an MOAI type anti-depressant medication.
Deseril (Methysergide) is an Ergot alkaloid, so do not take any of the above triptans with Deseril, or any other ergot-alkaloid. Ever.
Maxalt is generally too slow to work in CH, I would suggest trying to get hold of Imigran (Sumatriptan) in a tablet form (Fast Dispersion Tablet - FDT) or even injection form, if the attacks are real bad.

Temazepam is not contraindicated with anything else you're on.
Everyone needs a good night's sleep.
Taken at the same time each night, it may help to reset your bodyclock, which in turn, may help your bodyclock to reduce CH attack frequency, especially at night.
(Just my experience. Occasionally I use 14 days of Temaze to reset my bodyclock, but no more than 14 days)

Prednisolone is a transitional treatment, used in the very short term (4-6 weeks tops) in a gradual downward taper. Usually this buys you some relief and your treating physician some time in which to transition to a more suitable preventive medication.
It is not a preventive, or an abortive and should be used sparingly...

Deseril (Methysergide) is a particularly nasty drug.
I had 4 years experience with it, not pleasant for you or your liver.
It is an Ergot-alkaloid and works in similar ways to triptans (Vasoconstrictor), but they will prescribe it as a preventive. Usually 3 months on, 3 months off, so as to give your body a rest. It is being used less and is no longer sold in some countries due to the bad side-effect profile. Australia is one of the last places on earth still prescribing it.
If you say Ergots didn't work, from my personal experience, I would ditch Deseril before it causes issues. After 4 years solid use, I did ask "If this is an Ergot-alkjaloid, can I take it on a pre-attack basis?" (As an abortive) the answer was, if it works for you, then yes do it.
From a not particularly well educated GP mind you...

Indomethacin (Indocid) has no place in CH treatment.
Neuros will prescribe it, often checking you for a response, in which case they can rule out CH from your diagnosis. It is a good diagnostic tool I suppose.
Headaches like Paroxysmal Hemicrania show an "absolute Indocid response".
CH does not usually respond to Indocid, or any of the NSAIDs (Non-Steroidal-Anti-Inflammatory Drugs) like Nurofen (Ibuprofen), Voltaren (Diclofenac sodium or potassium). It will burn a hole in you gut. I'm not trying to fear monger here, but Indocid is a well known gut burner, with 50+ years of history in causing GastroIntestinal issues, like ulcers. It's response in CH is minimal and it's relevance to CH treatment, questionable... I would ditch that one too, it's another one that is being used less and less.

I am not familiar with the Stematil.
http://www.betterhealth.vic.gov.au/bhcv2/bhcmed.nsf/pages/swcsteme/
$file/swcsteme.pdf
I suspect you've been given it for Nausea?
For what condition was this prescribed, Belle?

It may be contraindicated with sleeping pills or any other drugs.
I must read up on this one for you and get back to it, I have a full day ahead of me.

Bear with me belle, I will locate and link up all the datasheets later.
I will see what you're actually taking right now and find any obvious dangers.
Like I said, I'm not a Doctor, but this lot could put you in some serious trouble.
Depends which you are currently taking.

I will be back onto this ASAP, I have some researching to do and a few people to talk to about Stematil and CH.

Back soon.

Cheers, Ben.

By the way, if you wish we can take this over to PMs, or even email, up to you.
But the forum does give others a chance to learn from Doctors mistakes and CHers experiences...


Posted in Batch's anti-inflammatory regimen for CH on 16 May, 2013 - 10:09 pm

Thanks Dan,

Although this may all appear altruistic and "noble" of me, as my specialist puts it.
It is entirely selfish, I want CH relief!!! As I'm sure everyone here understands.

I ignorantly tried the one man mission to cure the sore heads of the world, one at a time by doing trials of some far out medications.
More often than not, the drug contraindications put me in hospital, not fun. But at least it puts a line through those shitty drugs, before others get exposed to them. That pretty much killed my altruistic streak, but I find it coming out more lately...
It has been about 18 months since I trailed anything new. The distance from that is doing me good. Not so angry on here these days...Sorry bout that when I was...

It is good to help others through the site with solutions other than the regimen too.
I'm just trying to put my ass on the line for me mainly.
If the regimen helps others, then even better.

My contributions are meager.
Batch deserves the credit, he shared it with us all, where many would have attempted to profit, or simply neglected to mention it to anyone.
There is no "I'm right Jack, stuff you" in Batch. He's the real deal.
He has put his ass on the line in far scarier ways, I'm sure...
He is the altruistic one here. He deserves full credit for my CH relief and that of many others. Batch doesn't strike me as the type to try to profit from pain.
(I note his forfeiture of any profit from his patented high flow O2 demand valve, just to get it into development and out to CHers. Yeah, Hi Batch!! I do my checkin up...you sneaky old bugger...)

I've been a volunteer for far scarier things than the regimen.
The only differences here are that this "seems" safer than a lot of the drugs I have been trailed with. Mind you, Batch continues to do masses of research on this and we all benefit from his ongoing work.

Not that I don't trust Batch, but a few failed drug trials and near death experiences have taught me the hard way to stay vigilant. I've nearly died at the hands of "the best" Neurologists before... So, I read up to 15 hours a day on D3 studies, all the co-factors, endocrinology textbooks, medical terminologies and all the tangents I can lay my hands on, still I am an absolute novice, at best. I've only been reading this stuff for a few months.

Once the basics have been covered and you are reading the same duplicitous D3 dosing data for the umpteenth time, I think there is more to be gained by sourcing the recipe and throw it down the hatch, with monitoring of your own obs and bloods of course...

I have to research for my own safety and go through the withdraw/introduce tests to validate the science experiment. Science experiments are only valid when repeatable.
What's the worst that can happen when I do a burn down? I get CH.
(This is not an "I'm so tough" thing either, I'm in a privileged position)
I know it well.
I can handle it.
I know it won't kill me.
I have bailout drugs in the form of Imigran.
With the added bonus of one of the world's best watching over my shoulder, I feel safe in doing this.
The relief speaks for itself. (despite my epic posts, speaking for it smile )

Hell, I'm in the driver's seat on my own CH.
This is new and exciting.
How many people can say that?
It feels good and the view from here looks good too.

I just see no reason why I should not try to take as many people with me for the ride.
Why not?

CH is a sonofabitch, I want relief and so do others.
I hope people reading this are seriously considering giving it a go.
I've done my best so far to cross check, validate the idea and have it clinically monitored.
I will continue to monitor and post.

The rest is up to individuals to take this info from this page (or preferably Batch's) and get the regimen happening.

If your CH is blazing away, what have you got to lose?
Seriously!

A big thank you to all the people who seem to get a kick out of my relief. I don't really understand it, but I really appreciate the support.
You guys have helped me so much, I am indebted for sure.

Roger, you're a bloody legend.
Creating this site has not only saved lives, but made them worth living.


Cheers, Ben.


Posted in Batch's anti-inflammatory regimen for CH on 16 May, 2013 - 7:02 pm

Hi to all,

I hope those under the duress of severe CH pain will consider the regimen.

I took my CH case, a copy of the regimen, an extract from Batch's unpublished paper and my own accumulated CH data in for clinical assessment.

My specialist is certainly the man for the job.
I know I go on about him sometimes, but the man really is brilliant.
Professor of Clinical Pharmacology (Not a Neuro), Headache specialist, an excellent pain clinician, Headache researcher extraordinaire, IHS Member, prolific writer of papers, ethicist, NPS member and all round bloody good bloke.

I caught up with him yesterday.
We discussed many things.

I showed him the regimen and my successes with it.
He indicated that the D3 dosing was not excessive (paraphrasing here).
He decided to give me some clinical supervision, for safety reasons.
This is something no GP was willing to do.
My specialist explained that as clinicians, GPs and practitioners are trained in the use of Vitamins & Minerals to treat deficiencies. This will lead to recommendations within RDAs. GPs are not trying to treat chronic disease with D3 doses, or any doses beyond RDAs. The RDA/RDI system is something they are trained not to question, it is the product of expertise and experience. GPs are not going to "trailblaze" outside of recognised guidelines. So looking for full GP support here in Australia, when taking the regimen, is unlikely to occur. They are not trained for this sort of approach.

Having said that, I got some clinical supervision for safety.
One of the known problems with taking excessive D3 doses is Hypercalcemia (and I mean Excessive - over 40,000IU/day, or megadoses of 1,000,000IU, yes 1 Million IU).
Hypercalcemia (google it) is too much calcium in your blood.

Yesterday I did a serum calcium test (blood test) for safety.
I will let the site know how it goes.

I've been on 5000IU D3 X 3 daily (every 8 hours)
2 capsules of 1500mg high strength fishoil (every 8 hours) total 6 per day.
2 X Centrum, 1 morning, one night.
I wash down each D3 dose with at least 250ml of high calcium milk.
(I had a drug interaction with calcium supplementation and a beta-blocker for heart rhythm, Atenolol. So I had to stop Calcium supplementation and use diet, I get about 200% RDA of calcium through diet,. Yoghurt, cheese, milk etc)
I have ditched Magnesium, except from the 100mg of Mag Oxide I get from 2 Centrum per day.
I had some weird feelings in my chest after taking K2 MK-7 (Menaquinone) so yesterday I stopped taking that too.

I have done 3 complete "burn downs", where I withdraw the regimen and wait for CH to hit. It takes about 12-36 hours.
I get back into a 4-5 attack per day cycle, aborted with Imigran, for 10 days. Then I drop a 50,000IU D3 loading dose, reintroduce the regimen and it takes about 72 hours to stop CH again.

3 times I have withdrawn the regimen, to a consistent bludgeoning of CH. 3 times I have re-introduced it, to have CH stop.
This rules out placebo effect and establishes efficacy in my case.

It is NOT A CURE. CH still blazes away.
I still have all the other symptoms of regular attack.
I am having one now, but pain level is 0.5, where it may have been 5-6-7. I'm at the computer, not writhing in bed.
This feels like Pred. Attacks blaze away, just under the threshold of the "preventive" and threaten to break through. Sometimes they do. I took Imigran FDT yesterday morning for one absolute bastard of an attack that awoke me at 5am. But I have had only 2 Imigran FDT since 28 April - now 16th May, no injections in that time. All through April I was taking 3-4 FDT per day and using an Imigran injection every 48 hours or so, sometimes 2 a day.

Frequency has now gone from 4-5 attacks per day, back to 1 or 2.
Severity has gone from 7 - 10, back to 0.5 - 2, simply not worth medicating. Duration is now longer because I use no abortive drug.
I get the full 3 hours now, but the reduced severity means it is nothing more than a painful inconvenience, like a Migraine is...

The other symptoms are still disabling.
Photophobia, Phonophobia, sweats, shakes, pupils shrinking, stabs behind my right eye, but it is reduced so much.
I notice that if an immune system consumer comes along, like a head cold, the D3 seems to be used up in dealing with that and CH will kick my ass. But D3 keeps head colds down to a 24 hour incident, instead of weeks. So I stay on the regimen and within 24hrs, the sniffles are gone and with it, CH too.

Some measuring and tweaking left to do for sure.
I will use the clinical supervision and pathology as a guide and keep the site posted.

Cheers, Ben.


Posted in My 30th Birthday Present, Clusters are back after 5 years!!!! on 16 May, 2013 - 6:22 pm

MIck,

I used to compare all pain to CH.
I asked people about it here, there's a thread on it here:
http://www.clusterheadaches.com.au/forum_posts.php?id=2588
"Do your headaches go to eleven?" where we discuss pain levels we report to medical practitioners. (That Ben there is me, under an old profile, I started the thread back when...). This old thread gives a fairly broad spectrum of thoughts from seasoned CHers on reporting pain levels, there's some pretty insightful input and it makes pretty educational reading from some experienced CHers, who have other pains as we all do.
Turns out it is not such a good yardstick to go around comparing any other pains to CH.
You could be doing yourself out of some serious pain relief.

CH is essentially the distension of an organ; the brain.
Some of the most painful conditions known to medicine involve distension of an organ; a bladder that won't drain, kidney stones etc.
CH involves distension of the very nerve centres we use to cope with and perceive pain.
The brain itself, cannot feel pain. In the case of CH, it is the trigeminal nerve branch that sends the pain signals from behind your eye, temporal areas and jaw. (3 nerve branches). Our coping mechanism itself becomes distended. No wonder CH is one of the most painful conditions known to medicine.

If you want others to appreciate it, perhaps tell them it is like an ice-cream headache that will not end for 3 hours, whilst you have a hot poker jammed in your eye, whilst staring directly into the sun...
4-6 times a day, for 10 months of the year, for 34 years. (In my case anyway)
That wakes them up...

Pain levels...
When I went into A&E with a slipped disc last year (herniated), the nurses ask me "what is your pain level out of ten?'.
I used to chuckle, think of my CH pain and say 2 or 3 for a major disc prolapse.
Perhaps I did this out of a sense of stoicism, bravery or just plain ignorance.
Comparisons with CH are not relevant to other conditions when seeking pain management and.or emergency relief.
I was doing myself a dis-service and boy did I pay for it.
Last time I slipped L1 and had roaring sciatica, they asked me again "Out of ten?",
I said 10, because it really bloody hurt, like screaming type of hurt.
For the first time ever, I received Morphine and oxycontin, in house, as a one-off. It was appropriate for my condition and gave me relief.
(Incidentally, in 34 years of CH I have never been offered Pethedine, Ketamine, Morphine or any of the strong stuff, which is good, because Opiates do not touch CH - a fact.)

Sorry, I can't check all my spelling of drug names, I've moved house and my connection is painfully slow... excuse any omissions or spelling/research issues until I get it sorted.

As for the term "Headache". It simply does not convey the severity of the condition.
We have debated a name change for the condition at length here.
General consensus if I remember it right, is that CH has had so many names, changing it now, simply to try to convey the severity of pain would be counter-productive, as GPs and specialists are only beginning to get their heads around the term "Cluster Headache" now.

A re-write of the current literature for all medicos at this late point, would probably do CH awareness more damage than good. So we're stuck with it.

But you're not alone in feeling frustrated with the term "Headache", everyone's had a headache - just ask em... It is such a subjective thing, that everyone inevitably compares their worst hangover, or Migraine with your CH Mick.
It sucks mate, I know. I have put up with it for life.

This does not stop my specialist from saying "Perhaps it would be better conveyed if you could walk around with an axe hanging out of your forehead or something...".

Perhaps tell people you have a "Trigeminal Autonomic Cephalalgia".
It's a mouthful, I know, or that you have a complex Neurological pain syndrome.
It's a hard one.
No matter what you say people remain confused, even in the absence of the use of the term "headache", they will still look at you like you got two heads mate, something we all battle with.

I listen to people in waiting rooms and emergency talk about their hangovers and I just nod and sympathise. I don't bother "tuning them in" on CH anymore.
Practitioners, blood nurses, uni med students are a different story, I unload a full cartridge on them all. I take the full the hour appointment to do an impromptu 1 on 1 seminar on CH, often leaving them well tuned in and gasping for air.
Few practitioners forget me. "Your the one with Cluster Headaches" they say...
"I googled that, you poor bastard, I read about it and have NO IDEA how you live with it" is a uniform response. But we keep up the CPE - Continuing Practitioner Education.

We are winning by sheer attrition.
More GPs have heard of CH than ever, more know how to treat and/or refer for it.
Average time to correct CH diagnosis is still up well over 5 years, but through an astute GP and a bit of help from this site, a bloke recently went 12 days from first attack, to diagnosis, to treatment with Oxygen. 12 days - that is some kind of record.
We are winning the awareness battle, one practitioner at a time!

Employers and the general public can't be expected to get it.
They have no idea what we go through and I for one don't bother telling most anymore.
That's a personal choice thing. If someone listens and is interested, I will talk.
Opportunity is where you find it!

Keep your head screwed on Mick.
We're here if you need anything, no worries.

Cheers, Ben.


Posted in My 30th Birthday Present, Clusters are back after 5 years!!!! on 15 May, 2013 - 10:19 pm

Hey Mick,

Glad you didn't take the driving thing the wrong way mate.
It was a realisation to many of us to hear of what a lot of us fear, but do not talk about; a major accident involving CH. Ol' Buzz did the right thing telling us, I know it makes me think twice before driving, for sure. His warning worked better than any shock advertising about driving. I hope he's OK.

The GP I mentioned, the one filling in for my usual GP wanted me to go hard on the Maxalt to try and stop the CH's before they build momentum was her words.


That's the product of a GP who hasn't done you the courtesy of following her training.
She is not supposed to be a CH expert. Not at all.
She is trained however, to pick up the referral pad and send you off to someone who is.
Preferably a headache specialist.

If you put up a suburb, or even a state mate, I may be able to locate a "CH aware" specialist for you, or just check out the "Practitioner's TAB" on the left there and see if any are in your state. Finding a good headache specialist is more than half the battle!

Gees mate, your GP would have had a thing or two to answer for there if you did crash.
Any consequences will have landed squarely on your shoulders, for sure.
No specialist referral? That's one lousy GP.

Triptans are abortive drugs, to be taken on a "per-attack" basis only.
Never take a Triptan daily as a preventive.

Zafron? I've looked it up and terms like it, but I can't find anything close.
The only one off the top of my head which is close might be Zomig?
Zomig is Zolmitriptan.
If, and I mean IF you are taking Zomig (Zolmitriptan) and Maxalt (Rizatriptan), you're doubling up on triptans mate, not good. I could be wrong about the name, but you best check that somehow GP overlap has not put you in a position which is quite common - taking 2 drugs simultaneously from the same group. You should not take any alternate Triptans within 24 hours of each other, or use any Ergot-alkaloids (Ergotamine, Cafergot, DHE, Methysergide/deseril) or take any of them whilst on an MOAI class anti-depressant.

It is quite common for me to get questions like this.
This is nobody's fault, it just happens in CH;

Example; "I got Imigran from my GP and Cafergot from my Neurologist, which should I take first?"

This rings huge alarm bells, because the answer is' "They are contraindicated for concurrent use". Two drugs of similar mode of action, that do not go well together.

Another common one I hear is: "I have Verapamil and Isoptin, do I take them both?"
Verapamil and Isoptin are the same drug, under different names, so be careful and know your active ingredient, so as not to double up on it!

If you need any help Mick, you know where we are.
Feel free to ask anything, have a rant, whatever you feel.

Cheers, Ben.


Posted in Side effects from Verapamil. on 14 May, 2013 - 7:53 pm

Hi Jo,

Yes that is a common side-effect of Verapamil.
I have heard of a ruptured intestine caused by constipation in treatment of child CH from Verapamil use... Many Doctors will recommend undesirable laxatives, most containing Senna, or Sennosides as their active ingredient.

Senna and it's derivatives' mode of action is to cause intestinal spasm by peristalsis (Peristalsis is a radially symmetrical contraction and relaxation of muscles which propagates in a wave down the muscular tube), with undesirable and unpredictable results. Movicol is a new generation version, with completely different mode of action(s), it won't get you into trouble, will not interfere with drug absorption or reduce GI transit time, but will relieve the problems caused by Verapamil, whilst leaving enough of the drug in your system to still be effective.
http://www.movicol.com.au/

Check out this thread, I posted some very relevant studies there that may be otherwise difficult to locate, also some patient experience with Verapamil:

Verapamil Hydrochloride thread:

http://www.clusterheadaches.com.au/forum_posts.php?id=2973

GET REGULAR ECGS whilst taking Verapamil!!!
It's all in the thread...

--------------------------------------------------------------------

This thread, "New Here", posted by "Matty" covers some of the reasons why Relpax is perhaps not the best choice of triptan in CH. It's a slow-burner.

http://www.clusterheadaches.com.au/forum_posts.php?id=2975

There are better triptans (Sumatriptan/Imigran) and better modes of delivery - nasal spray, Fast Dispersion Tablet (FDT), normal tablet and injection too.

Hope this helps.

Cheers, Ben.


Posted in Income protection to cover cluster headache (pre-existing condition) on 14 May, 2013 - 7:33 pm

Go for it Belle!

Fire away, there are so many ideas in heads here!

While insurance companies jerk you around, we are focused on CH relief here and now. We all understand that CH don't wait for no-one!

Batch's regimen (I know I flog it) is really something.
I have only seen anti-inflammatory response (and CH relief) like this from Prednisolone. This is much, much safer. It can take a while - even 4-5 months to get 25(OH)D levels (Vitamin D3) up to where you need them, but the health benefits are amazing!

What scripts have you got there Belle, out of interest?
Just want to see if your neuro is on the ball or not...

Welcome anytime, we need more input!

Cheers, Ben.


Posted in My 30th Birthday Present, Clusters are back after 5 years!!!! on 14 May, 2013 - 7:23 pm

Hi Shanno,

The use of Maxalt (Rizatriptan) by doctors in treating Cluster headache perplexes me.
My specialist (A Professor of clinical Pharmacology and inventor of Zolimtriptan) is particularly familiar the the Triptan drug groups and when I asked him what he thought of the Maxalt wafers, he replied "They're a bit of a gimmick...".

If it works for you then great!
But there are better options, that won't leave you susceptible to making errors like putting unleaded into your Diesel car.
It does make one wonder, were you capable of safely operating a motor vehicle, from either CH itself, or the drugs used to treat it?
Not having a go, but a member here recently wrote himself and 2 parked cars off, due to CH. He learned the hard way and it could have been much worse...
Simple errors like that are a good indicator that perhaps you should reconsider driving until you better know how any Triptan or drug used in CH, may affect you...

Maxalt:
https://www.ebs.tga.gov.au/ebs/picmi/picmirepository.nsf/pdf?OpenAg
ent&id=CP-2009-PI-00743-3


Taken from the above Rizatriptan (Maxalt) datasheet:

Pharmacokinetics

Absorption

Rizatriptan is rapidly and completely absorbed following oral administration. The mean oral bioavailability of the tablet is approximately 40 - 45 %, and mean peak plasma concentrations (C max ) are reached in approximately 1 - 1.5 hours (T max ). Administration of a 40 mg dose with a high - fat breakfast increased the extent of absorption of rizatriptan (approx.19%), but delayed the absorption by approx. 1 hour. In clinical trials MAXALT was administered without regard to food with no apparent effect on efficacy.

The bioavailability and C max of MAXALT wafers are similar to that following tablet administration. The apparent rate of absorption is somewhat slower, with T max averaging 1.6 - 2.5 hours.

Definitions:
(C max - Cmax is a term used in pharmacokinetics refers to the maximum (or peak) concentration that a drug achieves in tested area after the drug.)

(T max - maximum threshold; time to maximum [concentration].)
-------------------------------------------------------------------------------------------

Since the majority of cluster headache cases conform roughly to the IHS guidelines by which they are diagnosed (15-180 mins duration), I would suggest that the selection of Maxalt wafers is a poor choice to abort CH attack, for anyone.
It is more suited to headaches of longer duration, like migraine, as many Triptans are.

Put simply, Maxalt has low absorption (40%), and it takes way too long to work on CH attack (1 - 1.5 hrs), if not further delayed by stomach contents.

Fear not!
There are other Triptans and other delivery methods.
CH patients like to "juggle their Triptans" to find what works best for them.
I would suggest trying Sumatriptan (Imigran FDT tablets).
It is freely available on the PBS in many delivery modes; Nasal spray, tablet, Fast Dispersion Tablet (FDT) and also Injection.

Off the top of my head, I think Sumatriptan in tablet form has about 40% absorption too, but works in 25-35 minutes, clearing out of your system in about 90 minutes.
This means it hits CH much faster than Rizatriptan and leaves less chance of feeling "groggy" or any after effects, as taking Imigran is a fairly short event, as is CH. (15-180 mins). Also less chance of getting into a medication overuse/rebound CH cycle.

You can reach for Imigran more often than Maxalt, with fewer complications, in the longer term. Imigran injection also has 96% bioavailability and is absorbed in 5 minutes flat - instant relief. It hits CH like a sledgehammer.

I would suggest that you discuss alternative Triptans with your Doctor, especially Sumatriptan. If you have been approved prescription for Rizatriptan, you already show that Triptan use in your case is appropriate and tolerated.
I reckon you will find Imigran the go!

http://www.pbs.gov.au/medicine/item/1849H-8144P-8341B-8885P

Don't be afraid to ask, GPs and most specialists know jack about matching Triptan use to the correct application and headache type.

Cheers, Ben.


Posted in Thanks Mum on 12 May, 2013 - 4:03 pm

Hi to all the Mums out there.

You are the greatest CH supporters we all have.
The first to see childhood CH,
the first to treat it,
the first to take us kids to the GP,
the first to give us a hug when it all gets too much,
the first to be there when we need support.

You've been with us, through all the tough times and the good times.
Stayed up all night with us, witnessed our strongest pain and our lowest of lows.

I just want to thank all the Mums out there for all they've done as supporters of those with Cluster Headache.

With you all there when we need to talk, the world simply is a better place.

http://realitysteve.com/wp-content/uploads/2012/11/rose1.jpg

Thanks to all Mums, Cheers, Ben.


Posted in is this even working on 11 May, 2013 - 2:32 pm

WE HAVE CONFIRMATION!!! IT WORKS SPECTACULARLY WELL ROGER!!!

Thanks again Roger, this has been such a pest.
We all appreciate your time (especially on weekends!) in sorting it out.

I have a stack of PMs that I can now send, including drug names that previously triggered the ol 403 error.

Thanks again Roger.

Come back Sonja, it's fixed!!!

Cheers, Ben.


Posted in Sphenoplatine Ganglion or SPG block just got easier on 11 May, 2013 - 2:29 pm

Gday Kim,

Long time no see mate.

I posted this because I was knocked back at practitioner level due to the discomfort for patients. The version on offer to me (and this has been a while so the memory is a bit foggy) apparently involved me laying with head tilted back.
Some balloon-like device was to be inserted between my eyeball and eye socket and inflated. A large needle was going to be used, fed in under my eye for the procedure.
I am unsure whether they planned to inject Cortisone or Lignocaine.
As a drug, one would think Lignocaine would be fairly useless, as it is a short acting local anesthetic. I always thought a localised shot of pred was the drug of choice, or would be the preferred option. But I am not well versed on Neurosurgical procedures.

SPG was pretty much dismissed as a treatment being quite uncomfortable for me, the patient. I was told I would probably feel like I was drowning, due to the addition of some water or spray part of the procedure.
Success rate in CH was debatable.
I trusted the judgement of Pr Rolan on this. He has so much experience in treating Headache disorders that if his risk/benefit analysis says to dodge that one, I now often do.

I once went against his recommendation and insisted that I try Topamax.
He certainly would not deny me appropriate treatment, so he went on to prescribe and closely supervise Topamax and monitor the pathology, dosage revisions etc.
He warned me of the side effect profile, and as it turns out - I had all of them.
300 days of hell, ending in the back of an Ambulance.
All at my insistence, against the recommendations of an experienced practitioner.
This was something I did, following a load of bullshit medications and lack of supervision from Neuros (The No ECG Verapamil incidents)
It was about the time that the ambo sirens switched on, that I realised I should have deferred to the expertise of this particular specialist on this particular drug.

I have not researched the old SPG procedure, as I have had other areas to research.
If it was dismissed as difficult for both Practitioner and patient alike, perhaps this little device will bring it back to the toolbox of frontline transitional therapies.

Who knows. Perhaps slipping in for one of these, even with Lignocaine, may push the Pred taper procedure further toward the back burner during the search and dose ramp-up of a suitable preventive. I know it will be logistically simpler for a GP to prescribe Pred and get it from a local chemist; instant relief.

But with new systems and outpatient day procedures becoming faster and more accessible this may become a preferred option to the dangers of Pred.

Its certainly a lot less invasive and hopefully when it hits Oz (a research team have used it here) it will move SPG procedure from the arcane to a fast, cheap and available option for CHers.

Every development helps, that's why I post em.

Cheers, Ben.


Posted in Sphenoplatine Ganglion or SPG block just got easier on 10 May, 2013 - 3:59 pm

May 09, 2013 02:12 PM Eastern Daylight Time

New Catheter from Dolor Technologies Used by Physicians Who Treat Chronic Headache and Other Disorders.

SPG Blocks have been preformed for centuries, but new technology allows them to be performed with comfort and ease

SALT LAKE CITY--(BUSINESS WIRE)--The medical device innovator Dolor Technologies today announced the U.S. availability of its patented, breakthrough drug delivery catheter, SphenoCath™. SphenoCath is a single-use, disposable catheter that delivers medication through the nasal passages to a difficult-to-reach ganglion located at the back of the nose without needles, sprays, swabs or sedation. When used as indicated, SpenoCath saturates and sustains the medication immediately proximate to the ganglion to achieve a Sphenoplatine Ganglion or SPG block. Interventional radiologists, neurologists, internists, emergency departments and pain specialists are interested in utilizing SphenoCath for a safe, comfortable and quick delivery of the medication required for the SPG block procedure.

The drug delivery innovation, SphenoCath, is drawing the attention of physicians who treat patients with chronic and episodic migraine, cluster headache, and chronic daily headache and for other applications. The SPG blocks have been studied for many disorders for over a century. More recently however, the block has been associated with profound neuromodulation of the SPG complex, resetting the chaotic signaling associated with chronic migraine with both immediate and sustained results.

Though widely accepted as effective, few physicians are willing to perform an SPG block because the traditional procedures are uncomfortable for the patient and demanding for the caregiver. Formerly, the block was attempted by navigating a cotton tip applicator through the nasal passages, by atomizing a spray or with a long needle through the side of the head. These older approaches carry risks, sometimes require sedation and may not be effective in all patients.

Steven Eror, the Company’s CEO, remarked, “We expect that the comfort, ease of use and precision delivery of the SphenoCath innovation will dramatically expand interest in SPG block by physicians who want to use the block to treat patients with headache pain and other disorders.”

Headache alone affects nearly 45 million individuals, and migraine occurs in 6.8% of men and 15-18% of women. Nearly two-thirds of headache patients discontinue prescription medications due to inadequate relief and side effects. The SPG block may also have utility in the treatment of other disorders.

The SphenoCath is designed to deliver medicines or fluids to the nasal cavities, and can be used to provide blocking medication directly to the entire SPG apparatus. Depending upon physician preferences and anatomical variation among patients, SphenoCath may be used with or without fluoroscopic visualization.

The full article:
http://www.businesswire.com/news/home/20130509006234/en/Catheter-Do
lor-Technologies-Physicians-Treat-Chronic-Headache


SphenoCath's website:
http://www.sphenocath.com/

A video showing the SPG procedure using Spenocath for headache conditions:

http://www.youtube.com/watch?v=4ZlYLXP6sXQ

Supporting Documentation:
Sustained Headache Management via Neuromodulation of the Sphenopalatine Complex

http://www.sphenocath.com/wp-content/uploads/Sustained-Headache-Man
agement-via-NSClte.pdf


Cheers, Ben.


Posted in Off to see Dr. Michael Walsh. on 10 May, 2013 - 1:59 pm

Jo,

Welcome to the site Jo.
I'm sorry you had to find it.

We're here to help in any way we can.
Sorry to hear that you are having a bad time of it at the moment.
If there's anything we can help you with, there are a few quite caring souls here who can pop up and offer all sorts of resources, practitioners, logistical support, emotional support - whatever you need.

I see you've been at this CH business for a while now, like I have too.
If you want to, feel free to tell your story, what medications you are taking, or have tried etc. Your info helps the Moderators and contributors to find answers to CH.

There is so much accumulated knowledge here in the brains of site members, who are all glad to help. We also have the PM feature, if you just want to ask questions of anyone here and not tell the whole world! Whatever suits you.

I bowled in here quite angry at everything, thinking I had all the answers.
It turns out I was very wrong, I had exhausted all options for me.
You know what I found?
A bunch of very caring people who had ideas that I and headache specialists had failed to think of in 34 years of intensive CH investigation.

Through connecting with other CHers, we have all harnessed patient power.
More recently, a few of us have discovered Batch's anti-inflammatory regimen.
I have knocked otherwise intractable CH on the head, using this simple vitamin regimen, after 34 years of Chronic CH and 70 drug trials.

It is amazing what a few caring people, connected by technology can do for eachother.

When you've just had it with Doctors, medications, specialists and CH itself, here is where you can vent as loud and as long as you want, to a bunch of people who really understand what you're going through.

So don't be a stranger.
Ask as many questions as you like, fire away.
That's what we are here for!

Cheers, Ben.


Posted in Off to see Dr. Michael Walsh. on 10 May, 2013 - 8:44 am

Hi Jo,

From a quick look around, (If I have the right Dr Walsh, there are many...) it appears that he knows a thing or two about heads. Not being a Queenslander myself, I have not come across him.

It seems someone here on the site has, even going on to say that allegedly, Dr Walsh himself HAS CH, incredible:
http://www.clusterheadaches.com.au/get_help.php?show_state=qld#show


"Dr Walsh
07 38474366
Greenslopes hospital
Brisbane, Queensland
member comment:
Dr Walsh is a neurologist who suffers from ch so he knows what you are going through first hand. It might take a few months to get to see him though."

In clinical practice, there is a big difference between a run-of-the-mill "Neurologist" and a Neurologist specialising in headache conditions.
It would seem you are going to the right place!
Let us know how you go!

There's usually a good reason that any practitioner treating CH lands in our "Practitioner's Tab".

Good luck with it.

Cheers, Ben.


Posted in Income protection to cover cluster headache (pre-existing condition) on 10 May, 2013 - 8:18 am

No worries, glad to help, Belle.

Episodic CH for 2 months of the year is likely to be a relatively cheap condition for an insurer to manage, not that expense is, or should be a factor. Some private health insurers fork out up to $130,000 in one year, in various surgeries and in management of chronic CH cases, as one of our members will will testify.

I have no experience with insurance whatosever, but if they could discriminate on the grounds of medical condition alone, they would never be able to insure even a diabetic, which would probably cost more to treat than an episodic CHer in a calendar year.

They don't need any knowledge or education on CH specifically.
They simply seek to classify your CH as "pre-existing" and rightly so.
But the exclusions are in place, so I can see no reason why you should not be insured by them.

I would certainly question the validity of any decision to exclude you and ask them on exactly what grounds you would be considered "ineligble", for sure.
Even get them to put their refusal in writing.
My advice would be to conduct all business with them in writing.
Phone fob-offs are easy for them to get away with, but laying "pen to paper" or committing to a position in an email, or letter gives you written evidence to support your position.

Perhaps, fill in a policy application, (take a copy of it) submit it and let them knock it back.

You may find them all of a sudden, quite co-operative!

Good luck with it.

I have far more experience with medications in CH, than with insurance... In the meantime, there are many here who can help you to get relief.

Perhaps check out "Batch's anti-inflammatory regimen", it beats most available drugs used in CH, that's for sure...
Either here: http://www.clusterheadaches.com.au/forum_posts.php?id=2985&start=0[
/L]

Or go straight to the source, with Batch himself: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


But, if you have to go for medications, perhaps we can help.
I know a few people who know a bit about Pharmaceuticals in CH. ;)

Cheers, Ben.


Posted in Income protection to cover cluster headache (pre-existing condition) on 09 May, 2013 - 11:13 pm

Belle, upon further investigation, it looks like Medibank Private use the 2 Doctor certificate system to establish "pre-existing condition" status; One treating GP and one specialist to sign off on your condition.

(Meeting this same criteria in Chronic, intractable CH will get you a disability pension...)

I can't locate any list of medical conditions with them, I presume this is why they appoint the 2 Doctors, to provide the medical expertise and diagnoses to the insurer.

The (PEC) Pre-Existing Condition rule states that the waiting period (MP F3.6) is 12 months, I can find no exception. If after 12 months they can't refuse treatment, perhaps they can't refuse income protection insurance either, if both insurances share the same rule.

On their form "Pre - Existing Condition Certificate", they say they can only exclude you from health insurance for 12 months for a pre-existing condition:

"Pre -Existing Condition (PEC) means a Condition, the signs or symptoms of which, in the opinion of a Medical Practitioner appointed by Medibank Private, existed at any time during the six (6) months ending on the day on which the Member joined Medibank Private or transferred to a higher level of Cover."

http://www.medibank.com.au/Client/Documents/Pdfs/MPL_Fund_Rules.pdf


"The Pre-Existing Condition (PEC) Rule is applied in the first 12 months of membership of any cover where, in the opinion of a doctor, dentist, or other practitioner appointed by Medibank, signs or symptoms of an ailment, illness or condition related to a claim were in existence at any time during the 6 months preceding the date of commencement of membership of that cover. "

http://www.medibank.com.au/healthcover/forms-and-brochures/PEC_Medi
cal_Certificate.pdf


I would hazard an educated guess that if they will insure you for health cover, after an exclusion/waiting period of 12 months they would have to treat your CH, even if declared as pre-existing.

I have searched the site and can find no clear distinction between "private health insurance" or "income protection" in relation to the specific application of the "pre-existing condition rule". They are both insurances offered by Medibank. The above quote does say "any cover", so I presume that means - any cover, including income protection, which I understand from their advertising is a "level" of cover. (But this is insurance, I could be misled here)

They may not wish to insure against CH, they know it is expensive to attempt to manage or treat and is likely to cost them a lot more than you will pay in premiums. However, I don't think they can exclude you.

I think, to single you out as ineligible by medical condition itself, may be discriminatory. They may have to offer you income protection insurance, especially if you are already insured, have declared your pre-existing condition, have waited the 12 months and then go on to apply for a policy upgrade that includes income protection.

Just a guess, like I said, insurance is outside of my area (sifting the fine print is right in my area), but insuring and sitting out the 12 months may be a way in on income protection...

Hope this helps.

Cheers, Ben.


Posted in Income protection to cover cluster headache (pre-existing condition) on 09 May, 2013 - 10:06 pm

Hi Belle,

Sorry you had to find the site.
This is waaaay outside of my area, so I can't offer any help on income protection, sorry about that. I'm not much use to you there. CH can put you on Disability Pension, I know that much, there's an income! No seriously, I am sure someone will chime in with some timely and relevant info for you soon.

One thing that I do find very interesting though, if you can humour me for a minute here...
(Sorry about this, don't want to scare you off or anything, first visit and all...)

You must have experienced the lack of awareness of your CH condition, right across the board, from Doctors, Employers and pretty much anyone you meet.
Explaining CH to those we come across is not easy for any of us.
There is a big struggle for CH recognition in the wider world, that's for sure.

E.g; - The Pharmaceutical Benefit Scheme (PBS) will not yet officially allow prescription of any PBS subsidised drugs for use in CH, in Australia.
(To receive Imigran, either GPs must "bend the rules" and state that we have Migraine or even worse "Migraine/Cluster Headache", which makes CH recognition even more unlikely and complicated. Or, specialists prescribe CH medications for "off-label" or "experimental use" for CH, internally through a hospital Pharmacy.)

In a practical sense, most of the Australian medical system still does not recognise CH without a push, with perhaps the exception of specialist care in a clinical setting.

I am wondering, if through your honesty, you have unintentionally found a form of CH recognition in perhaps the wrong place...

If Medibank Private recognise CH as a medical condition so as not to insure against it, pre-existing or not, I do wonder on what grounds they consider you to be ineligble and hence, refuse to take your money.

They must have a CH definition somewhere, or recognised diagnostic criteria, in order to have established grounds to officially knock you back...

I am sure many of us would like to know how CH may have become officially recognised by institutions like Medibank Private, or from what literature they are reading.

(I'm not asking for this info from you, it's a bigger picture problem for us all), but it would be nice if Medibank Private could tell us all how they officially recognise CH, when so many others in our social and medical systems do not.

I'm interested to hear what they have to say.
Maybe I will ring them and ask.

Thanks for the heads up Belle.
It has given me food for thought, where I may find a possible answer for you...
I shall investigate.
Sorry my post is of no real use to you.

Cheers, Ben.


Posted in Oral Imigran prescriptions now interchangable on 04 May, 2013 - 11:01 pm

How's this for form from a Pharmacist ???

I contacted my GP for yet another Reg 24 script for 24 X Imigran FDT.
I phoned it in to the same pharmacy mentioned above, with 2 days notice.
They have my phone number, 2 days lead time and have not called me...
Upon arrival at the Pharmacy, I lodged my script.
They jerk me around for the obligatory 10 minutes...
The head Pharmacist comes out to speak to me.

He says "We couldn't get your Imigran FDT in, there must be a supply or warehousing issue", which as we know is not true, GSK have confirmed that supplies are fine, I have also sourced FDT through from another shopfront of this very chemist chain's same warehouse in the meantime....

The Pharmacist brings out this sheet of paper. I have seen it before. It is the "Brand substitution" document (above) which I had provided to them not a week earlier.
He says to me "You do realise, we can now substitute Imigran FDT with an alternative generic Sumatriptan?". Sherlock bloody Holmes...
I gaped like a goldfish in disbelief. icon
"We usually have 10 or 12 boxes of Sumatab, or our own house brand here if you want" he continued...
"If I want?" - this guy needs to google "Cluster headache"...

For over a year this alleged "Pharmacist" had been sending me down the road:
- empty handed with CH
- unmedicated
- No double checking their own shelves for Imigran FDT
- No warehouse checking

After OVER A YEAR of this, he mentions that the entire time, he has had alternative Sumatriptan mere feet away and knew about brand substitution.

Unbelievable...

Fortunately, I have not used the substitute Sumatriptan he supplied and I have Batch and the regimen to thank for that.
I look forward to watching it expire on my shelf.

Some people just don't listen or care.
Some Pharmacists just can't be tuned in.

I think I will buy him one of these shirts:

http://rlv.zcache.com/it_could_be_worst_i_could_be_a_silly_pharmacist_tshirt-r43051eac0d6e4b1dbdc0d41d2160b11d_804gs_512.jpg

I am taking my business elsewhere from now on.

Cheers, Ben.


Posted in Batch's anti-inflammatory regimen for CH on 04 May, 2013 - 3:24 pm

Hi to all,

Tweaked the regimen, persistence pays.

- Now on 15,000iu D3 - 5000IU 3 times daily, 8 hrs apart..

(It's worth noting that an external audit of D supplements showed a comparison between stated on-label content (IU) and actual supplement content. Results varied from as little as 9% of on-label stated D3 content, up to 146%.)

http://www.sciencedaily.com/releases/2013/02/130211162231.htm
http://archinte.jamanetwork.com/article.aspx?articleid=1570096

Not all D3 supplements are created equal, even within the same bottle, hence the need for regular 25(OH)D serum tests and D3 dosage adjustment to suit...)

- 6 X 1500mg fishoil. (2 X capsules, 3 times daily, 8 hrs apart)
I wash that lot down with a big glass of milk, for Calcium (250ml/300mg calcium).

- 300mcg Vitamin A, & 5 mg Betacarotene/day.

- Honey twice daily, 2 teaspoons total (for Boron).

I dropped Calcium supplements in favour of huge calcium intake from diet (200% RDI) due to a calcium supplement reaction with Atenolol, my heart rhythm drug. (watch out for Calcium and beta-blockers, Atenolol (Tensig, Noten etc, and Propranolol)

Dropped Magnesium back to 50mg oxides, found in Centrum.
(Yet to find tolerable Magnesium, currently looking Magnesium Orotate or at Epsom salt (Magnesium Sulphate) baths and transcutaneous mineral absorption studies.. looks like it might be a possibility: http://www.epsomsaltcouncil.org/articles/report_on_absorption_of_ma
gnesium_sulfate.pdf
) still tweaking...

Dropped Zinc back after an unexpected reaction (50mg/day, had numb top lip) Now on around 10mg Zinc/day.

Got the K2 MK-7, for redirecting serum calcium back into bone mineral density, as a long-term measure.
K2 MK7 (Menaquinone) data sheet:
http://www.douglaslabs.com/pdf/pds/200913.pdf
This does nothing for CH, itself, but preserves, possibly even builds bone density. This really gets peripheral circulation going!
My cold extremities (from Imigran use) are now quite warm.

BP and HR stable.

Gone from 4-5 attacks, back to zero - I'm green!

That's twice the regimen has worked like this.
I have withdrawn it for 10 days washout, waited for CH to resume hammering, which it dutifully did.
Had 5 attacks per day for over a week.
Re-introduced the cofactors one by one, upped the D3, it took a while and I'm green again. Vitamin A seemed to flick the switch on the D3 reserves and it all kicked in.

It takes some tweaks, but the regimen can work wonders.
Still need 25(OH)D serum tests...

Putting this in front of the Prof in the next couple of weeks.

Gotta go..

Cheers, Ben.


Posted in 10 year project - mapping the human brain on 02 May, 2013 - 1:55 pm

Mapping the human Brain.

People said it couldn't be done - but we mapped the human genome.
Pr Goadsby laments in CH research that we spend more money to learn more about the surface of Mars, than on learning about the human brain... Now it is time to get the cash together to better understand the human brain. One thing I have learned is that when I see the promise of big medical research $$$, it gets scientists' collective asses into gear, often with huge medical or scientific implications in areas we may not have expected, or have anticipated.

Surely this has to be one of the more promising developments in recent times for CHers. It's good to hear some interest in brain research with a view to better understanding the brain, developing therapeutic targets and treating Neurological disorders. All sorts of unexpected developments come out of mapping human anatomies, systems and structures. It would not surprise me if this project were to help scientists to come up with a raft of novel new treatments, or to overturn some long-held beliefs and myths about how the human brain is thought to work.

Advance in scientific thought is good for CH.
Mapping the human Brain has got to be good news for CHers.
I know they're not looking AT cluster headache, but they're at least, beginning to look in the right place, at last.

Good news indeed.

The man with the cash, Obama:
From the White House:

Obama announces $100 million in funding for the President’s Fiscal Year 2014 Budget, the BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative ultimately aims to help researchers find new ways to treat, cure, and even prevent brain disorders, such as Alzheimer’s disease, epilepsy, and traumatic brain injury.
------------------------------------------------------------------------
Charlie Teo is going to put a word in for Australia.

He wants the Australian Government to kick in some cash too, on our end. He said on ABC news this morning, he would like $100 million to use in research here in Australia and is going to scream from the top of the hill until the Australian Government listens.
I wish him luck.

The European Commission (EC) has created a €150m fund for brain research to launch the European 'Month of the Brain' - a campaign to raise awareness of the challenges and successes in brain research.

http://www.pmlive.com/pharma_news/ec_launches_150m_brain_research_f
und_474595


(Maybe the Australian Government could join the party and pony up some bucks??? Or will we be the only first world developed nation to leave this vital work to others???
It's an election year...anything is possible...)

Our Australian representative, Associate Professor of Neurosurgery, Charlie Teo will be the first Australian to address US congress on the brain mapping project. Charlie Teo goes there with Brain Cancers as his priority, but we all still stand to gain from the research.

Charlie Teo helps pioneer minimally invasive Neurosurgery techniques. One day, if the drugs and all other options have failed in CH, it may be Teo's work that ensures maximum safety and better patient outcomes during Neurosurgery.

Whatever you thoughts on Charlie, the man gets results.
He knows what it is like to be a patient and to empathise with patients - one thing few specialists will ever be in a position to do. He is one of the only leading medical specialists in Australia, who is himself a patient of a neurological disease. He shares with us a level of understanding as a patient through patient's eyes, as well as being a pioneering Neurosurgeon, in a position to bring about change.

"LEADING NEUROSURGEON FIRST AUSTRALIAN TO ADDRESS US CONGRESS ON BRAIN MAPPING PROJECT."

Source: http://www.cureforlife.org.au/latest_news/media_releases/

"Internationally acclaimed brain surgeon Dr Charlie Teo has today announced Cure For Life Foundation’s 10 year plan to find a cure for brain cancer, through the Global Brain Exchange, as he prepares to address US Congress next week.

Associate Professor Teo – a pioneer in keyhole minimally invasive techniques - founded Cure For Life Foundation – the largest funder of brain cancer research in Australia - in 2001. A/Prof Teo will leave the country on Sunday to attend a Brain Mapping Day at the US Congress, organised by the Brain Mapping Foundation and Congressional Neuroscience Caucus, on Friday May 10, as part of US President Barrack Obama’s vision to explore and better understand the human brain."
-------------------------------------------------------------------------------

The White House

Office of the Press Secretary
For Immediate Release
April 02, 2013
Fact Sheet: BRAIN Initiative

Source: http://www.whitehouse.gov/the-press-office/2013/04/02/fact-sheet-br
ain-initiative


“If we want to make the best products, we also have to invest in the best ideas... Every dollar we invested to map the human genome returned $140 to our economy... Today, our scientists are mapping the human brain to unlock the answers to Alzheimer’s… Now is not the time to gut these job-creating investments in science and innovation. Now is the time to reach a level of research and development not seen since the height of the Space Race.”

- President Barack Obama, 2013 State of the Union

In his State of the Union address, the President laid out his vision for creating jobs and building a growing, thriving middle class by making a historic investment in research and development.

Today, at a White House event, the President unveiled a bold new research initiative designed to revolutionize our understanding of the human brain. Launched with approximately $100 million in the President’s Fiscal Year 2014 Budget, the BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative ultimately aims to help researchers find new ways to treat, cure, and even prevent brain disorders, such as Alzheimer’s disease, epilepsy, and traumatic brain injury.

The BRAIN Initiative will accelerate the development and application of new technologies that will enable researchers to produce dynamic pictures of the brain that show how individual brain cells and complex neural circuits interact at the speed of thought. These technologies will open new doors to explore how the brain records, processes, uses, stores, and retrieves vast quantities of information, and shed light on the complex links between brain function and behavior.

This initiative is one of the Administration’s “Grand Challenges” – ambitious but achievable goals that require advances in science and technology. In his remarks today, the President called on companies, research universities, foundations, and philanthropists to join with him in identifying and pursuing the Grand Challenges of the 21st century.
---------------------------------------------------------------------------------------------

This sort of research gives me hope for my CH condition.

Together with these in the pipeline:
- IHS International Classification of headache Disorders (ICHD) version 3, revisions out soon. http://cep.sagepub.com/content/31/1/4.short
- World Health Oraganisation's - International Classification of Diseases (WHO- ICD11) revisions underway, due out soon. http://www.who.int/classifications/icd/revision/en/
- The DSM V (Diagnostic and Statistical manual of mental disorders, version 5) due out soon. http://www.dsm5.org/Pages/Default.aspx

I look forward to waving the past 20+ years of standard medical practice goodbye and embracing a new era in scientific thought and understanding.

Not sure how we could get behind this for Australian $$$, but I will leave the charity drives, grandstanding and photo op's on the hill to others, and get on with my focus on helping CHers through this site, to gain access to good individual patient outcomes.

Pain free days to all.

Cheers, Ben.


Posted in The Oprah Effect on 27 Apr, 2013 - 10:19 am

Hi Peter,

Spot on Peter - "commercial potential".
Migraine is a huge problem in developed countries, with huge untapped commercial potential. In commercial terms it is measured not in sufferer's pain, but in days of lost productivity and in market potential. It's all about the $$$.
All of the Migraine literature is littered with references to "untapped revenues" and how manufacturers could get their share of the pie.
Some CH marketing papers refer to commercial targeting of the "deep niche" market that we represent.
This is not necessarily a bad thing for CHers, but I do remain cynical.
In a way, CHers and the companies seeking to profit share a similar goal.
Companies attract far more dollars in Migraine research than we can ever hope to get in CH research. (There are not enough Australian Headache sufferers to bother manufacture or marketing Cafergot anymore...and that research is done.)

There are far more (reported) Migraneurs' days lost in productivity to Migraines in a US week, than there is here by a nation of CHers in a year.

Imigran, our CH abortive mainstay was intended for use in Migraine.
Now look how many CHers use it.
If it's in the commercial interest for drug companies to seek answers or even profits from Migraine - then we too stand to benefit.
Although two very different conditions, treatment overlap means that drug companies seeking to profit from Migraine, may just end up with a CH solution on their hands.
That's how we got Sumatriptan for CH and Imigran injection - straight out of Migraine research $$$$. Whether or not any drug will reach it to market for CH remains unclear.
So many have failed in the last 5 years...
No matter how cynical we can all be about recognition for CH, profiting drug companies and CH sufferers, at times, do share a common interest....

(When the drug companies do find a Migraine "cure", they will probably have over-estimated patient drug uptake numbers. They will blow the lid off the world's oldest 'Sickie" excuse and will be shocked to realise how many hangovers and bogus "sickies" have been taken in the name of Migraine...the condition the employer "can't see"...)

However, we live in hope...

Cheers, Ben.


Posted in Batch's anti-inflammatory regimen for CH on 26 Apr, 2013 - 9:46 pm

Hi to all,

Firstly an acknowledgement.
Batch has done the heavy lifting on all this, long before I even joined the site here. I am a regimen newcomer. Barry T Coles was Batch's friend and Australian CH contact point for all things O2 and on the regimen.
Although no Barry substitute, by any stretch, I was appointed a mod by Roger after turning the position down on more than one occasion.
In Barry's absence, I was also appointed "the man" (Batch's words, not mine) for passing on the regimen in Australia.

Barry bought the regimen to us all and I couldn't thank him enough for it, and did when he was still with us. At the time, I had my own discussions with Batch going, on seeking a clinical trial of the regimen here in Australia. Somewhere in the middle of it all, I ended up as an appointee by default.

Barry started the regimen work here.
Someone has to continue the work, so here I am, very much ill-equipped to fill such shoes.

I have no business posting a vitamin regimen here, but perhaps I am the only man here for the job... (Hi Batch!)

I will do my best by Barry, Batch and their work.

Sincerely, Ben.
---------------------------------------------------------------------------------------

Vitamin D research is a HUGE are, as I have been finding out.
Dozens of studies on Vitamin D are published every week.

For those interested in Vitamin D studies, discussion and a jumping off point for research, I will drop the Vitamin D council's website link here.

http://www.vitamindcouncil.org/

------------------------------------------------------------------------------------
Below: An interesting position statement on Vitamin D dosing.
(In Australian Pathology labs, we use nmol/l indication in reference to 25(OH)D serum levels, not ng/ml, as in the US)
-------------------------------------------------------------------------------------

For health professionals:
Position statement on supplementation, blood levels and sun exposure

Posted on January 12, 2010 by Vitamin D Council

Blood Levels

The marker for vitamin D status is 25-hydroxyvitamin-D [25(OH)D], a metabolite of vitamin D3. A 25(OH)D level determines whether a person is deficient, sufficient, or toxic in vitamin D. At this time, there is not a consensus in medicine in what blood levels define these categories.

The Vitamin D Council recommends maintaining serum levels of 50 ng/ml (equivalent to 125 nmol/L*), with the following reference ranges:

Deficient: 0-40 ng/ml (0-100 nmol/l)
Sufficient: 40-80 ng/ml (100-200 nmol/l)
High Normal: 80-100 ng/ml (200-250 nmol/l)
Undesirable: > 100 ng/ml (> 250 nmol/l)
Toxic: > 150 ng/ml (> 375 nmol/l)


(*Note: 25(OH)D levels can also be defined in units of nmol/L. The conversion between the two is [nmol/L]=2.5*[ng/ml])

The Vitamin D Council makes a recommendation of 50 ng/ml and defines the above reference ranges for the following reasons:

- The human genome was selected with abundance of vitamin D. Humans evolved in the sun near the equator, synthesizing robust quantities of vitamin D in the skin. Research has shown that lifeguards, farmers near the equator, and sun dwelling hunter gatherers maintain blood levels between 40-80 ng/ml on sun exposure alone1,2,3.

- The Vitamin D Council believes that the maternal 25(OH)D status necessary to provide antirachitic activity for offspring should be considered a biomarker for optimal vitamin D status in humans. Research shows that antirachitic activity in breast milk occurs at 45 ng/ml or higher, but not at 38.4 ng/ml or lower4.

- Research has generally shown that parathyroid hormone is maximally suppressed at 40 ng/ml or higher, another finding that the Vitamin D Council considers a biomarker for optimal vitamin D status5,3.

- The human body is usually unable to achieve 25(OH)D levels above 100 ng/ml on UVB exposure alone3. There are no studies to date to suggest that 25(OH)D levels over 100 ng/ml are beneficial, so the Vitamin D Council believes that the upper limit should be set at 100 ng/ml.

- Vitamin D toxicity manifests itself by hypercalcuria and hypercalcemia. Research has shown that serum calcium levels are not related to 25(OH)D levels up to 257 ng/ml6, but cases of toxicity have been reported at levels as low as 194 ng/ml7. The Vitamin D Council believes that a conservative threshold of 150 ng/ml should be considered the lower limit of toxicity.

The Vitamin D Council recognizes that there are not enough controlled trials at this time to either support these recommendation or oppose these recommendations.

Study references are included in the below link.

Source:
http://www.vitamindcouncil.org/further-topics/for-health-profession
als-position-statement-on-supplementation-blood-levels-and-sun-exposur
e/


Cheers, Ben.


Posted in The Oprah Effect on 26 Apr, 2013 - 3:51 pm

Hi to all,

For those researching any advertising claims, studies, trials on products, including supplements, even the "best" of the literature is littered with bogus claims.

Half the battle in ascertaining fact around the latest supplements or treatments, is sifting not only through trial results, but the integrity of the journals who publish them, that of the manufacturers, finding out who funds the studies and where the bias lies.

Most of these companies spend far more $$$ on marketing the supplement, than clinically researching it. Marketing $$$ wins out over fact, more often than not.

I'm not saying I have got it right at all.
I'm sure in the thousands of links I have posted, that there are bogus clinical results...

Recently, when sourcing supplements for the Australian adaption of the Anti-inflammatory regimen, I linked people to Chemist Warehouse, specifically to Swisse products. I did it simply because they had a half-price sale, I am a broke pensioner and a CHer, trying to help fellow CHers locate what they need, at an affordable price. (If you are going to get untested supplements, at least you will only be half as ripped off, in a half-price sale.)

I encouraged regimen users to seek out their own brands, showing no particular brand preference.

I also did this knowing that Swisse had their own issues...
Remember the line "You'll feel better on Swisse"?
The TGA forced them to drop that line, the battle between the two camps remains unresolved. Yet the Swisse website as of today (26.4.13) does not display the tag-line anywhere... They have their own conflicts of interest to declare anyway...
Their chief of Swisse clinical studies is the Father of the Chief Executive and co-owner.
http://www.dailytelegraph.com.au/news/swisse-secret-clinical-trial-
academic-is-chief-executives-father-avni-sali/story-e6freuy9-122630921
2330


In researching for evidence-based medicine, I ignore retail health sites, user driven (shills) input, sites offering medical evidence - complete with direct links to sales opportunities. Still, I sift a plethora of crap, just to find "the good stuff". Even then, clinical studies are not always as transparent as they should be. It's a big and ongoing problem for anyone seeking info on making a good cuppa, let alone researching the complexities of CH...

"Buzz words" like KUDZU or BOTOX attract attention.

Often, products get flogged and subsequently mentioned here before robust clinical trials have been done. Some of the "laymen" and "newbies" around here are quick to lob in and post their new supplement, often saying that it is "the answer" for all of us.

Often, whatever Oprah recommends, gets more market share than clinical scrutiny.

Check out "The Checkout".
This explains (in layman's terms) what we all must sift through, before posting anything here amounting to "evidence-based science" in medicine.

5 minutes of your time, will give you some insight into the reasons why you should be suspicious and apply scrutiny when seeking clinical trial results.

http://www.abc.net.au/tv/thecheckout/episodes/ep06.htm

Cheers, Ben.


Posted in Hi all on 26 Apr, 2013 - 2:43 pm

Thanks Matt, much appreciated.

I know you've written heaps on your ONS here Matt and I'm sorry to ask you to repeat yourself, but with info becoming old, thread titles dropping off etc, it's hard to locate it all as a resource.

Although I have refused it once, ONS keeps coming up in my case and I remain intractable, so I look forward to your patient account, indeed.

Hope you're doing as OK as you can.

Cheers, Ben.


Posted in Botox--here I go! By Dusker on 25 Apr, 2013 - 9:43 am

Hi to all,

Botox now appears for musculo-skeletal use on the PBS listings:

http://www.pbs.gov.au/medicine/item/6103F

Supplier:
Allergan Australia Pty Limited(Manufacturer code: AG)
Level 4, 810 Pacific Highway
GORDON NSW 2072
Tel:1800 252 224

PBS schedule cost per 100 units (1 vial): $415.50

This means it can probably be accessed via specialist for "off-label" or "experimental use".

National Prescribing Scheme (NPS) has now posted datasheets (4th April 2013), on it's use including reference to use in Migraine headache:

"BOTOX®is also used: to treat headaches occurring in adults with chronic migraine"

http://www.nps.org.au/medicines/muscles-bones-and-joints/nerve-musc
le-transmission-medicines/botulinum-toxin-type-a/botox-powder-for-inje
ction


The datasheet, again citing use in Migraine: http://new.nps.org.au/__data/cmi_pdfs/CMR06700.pdf

NPS Migraine treatments, including Botox:
(The botox reference here states that it is not available on the PBS)

Date published: 15 Nov 2012:
http://www.nps.org.au/conditions-and-topics/conditions/nervous-syst
em-problems/pain/for-individuals/pain-conditions/migraine/for-individu
als/migraine-medicines-and-treatments/migraine-preventive-treatments[/
L]


This may create some confusion between GPs, specialists and patients, but it looks like Migraneurs can get access to it, after other well established treatments have failed.

I hear that through a Physiotherapist, Botox approval can now be sought for use in Cervicogenic Headache.
This should work as a good diagnostic tool for Physios claiming to cure CH and put a few bogus claims I can think of, to bed.
I am yet to post on any literature on this front, but it's out there.

The current PBS arrangements mention nothing about CH and nothing about using BOTOX to treat it.

I had a one-man clinical trial model done for Botox in CH.
I for one, had it injected for my CH in about 2005/2006 by my specialist, who told me at the time, I was the first case of chronic, intractable CH in Australia that he knew of, for which Botox had been approved for experimental use. He obtained it through drug approval boards and sought ethics committee approval for "off-label' or "experimental use" in-house at the RAH Pain Management Unit ward, where I was stationed for the procedure.

It did bugger all for me, or my CH.
Waiting time for positive effects is not an issue.
(Don't let purveyors of Botox tell you that it's action is somehow delayed, and that you should repeat the procedure just to see.)
I was still getting absolutely bludgeoned by CH, so I spoke the Prof perhaps 2 or 3 days after the procedure and asked him "When is this stuff supposed to kick in?"
He asked "Still having attacks are you?"
I said "Yes".
He replied "If it is to work at all, it's effect should be immediate" or words to that effect. It was immediately deemed a failure in my CH condition and written up as such for the medical literature.

It did what it was meant to - paralysed my right eyebrow for 3-6 months. Very expensive for the hospital system and not very amusing for me...

BOTOX in CH - FAIL.

I get the impression from reading many studies and sifting through many advertising campaigns that purveyors of Botox (or reps) would prescribe it as a cure-all for everything if they could.
The "Buzz word" factor does not help here.
Drug companies seeking as many regulatory approvals for as many uses as possible is in the interest of sales. Many drug manufacturers routinely do this.
For every page of evidence-based clinical trial information I can find, there are hundreds of pages of advertising, patient input, placebo effects, expectations, cash for comment, paid advertising shills, falsehoods and promises that the trials show - Botox simply can't deliver.

This is the best the manufacturer can come up with and the warnings are scary:
http://www.botoxchronicmigraine.com/

Here is the full datasheet showing all current uses for Botox conditions, from the manufacturer:
http://www.allergan.com/assets/pdf/botox_pi.pdf

Botox datasheet for cosmetic use:
http://www.allergan.com/assets/pdf/botox_med_guide.pdf

Given it's lack of efficacy in IHS diagnosed chronic CH patients, I would give it a miss, on risk vs benefit analysis and personal experience.

Botox is used across many medical conditions to primarily paralyse muscle. From what I have read of it's proposed mode of action, I cannot see how it would be thought to work in CH by any mechanism; acting as a anti-inflammatory, proposed ability to "neuromodulate", stopping or modulating Hypothalamic activation, or in any way, altering the behaviour of the trigeminovascular reflex.

How Botox will attempt to help treat CH is beyond explanation.

Maybe it works for Labradors, I guess we'll never know...haha!
Update; it is used in Labradors too... cosmetic surgery for dogs.
Is there no "purpose" they cannot find for Botox?

Although the product BOTOX has been deemed "safe" and the vials on offer are biologically inactive, perhaps the first few lines of this will inform people that Botulinum Toxin is still one of the most dangerous toxins known to man:
http://en.wikipedia.org/wiki/Botulinum_toxin

Of interest...
Botulinum toxin is also a known biological weapon:
http://jama.jamanetwork.com/article.aspx?articleid=193600

Cheers, Ben.


Posted in Newbie from Scotland on 25 Apr, 2013 - 8:29 am

Cluster headache preventives:

http://www.adelaide.edu.au/painresearch/headache/headache_cluster/[
/L]


Why Gabapentin is used, or should not be:

http://en.wikipedia.org/wiki/Gabapentin#Pain

A list of alternate anti-convulsant drugs:

http://www.epilepsy.com/epilepsy/newsletter/sept09/aeds

Tried to write a post, but the site keeps blocking me with 403 errors...

Cheers, Ben.


Posted in Ambulance cover on 24 Apr, 2013 - 10:38 pm

Woohoo!

Great to see you around Heather!

When I first inquired about Ambulance cover in SA, I rang St John, of course.
I've seen them attending emergency for years, did the Grand Prix and heaps of events I did music at too, I did my Senior First Aid cert with them.
They are great people.

When i rang, the nice St John lady said to me that they don't do ambulance cover anymore.
It got me confused, because I think I still see them getting about all the time.
She mumbled something about state government contracts and for a while there was an ambo war or something going on here, I did see blank ambulances getting around with no names at all!
She forwarded me onto "SA Ambulance service" for my cover, which I subsequently used, without issue.

Maybe there's some overlap, I better check that out too...
OK, just went to the SA St John site.
My search for "Ambulance cover" returned no results.
I scoured the rest of the site for ambo cover, but to no avail.
Looks like they lost the SA gov contract maybe?

Still the best place for training, first aid kits and everything emergency in SA.

This is the only place I could find SA ambulance cover:
http://www.saambulance.com.au/ProductsServices/AmbulanceCover.aspx[
/L]


A mate of mine signed up (finally) the other day.
He got the application form at his local post office, filled it in there, paid the fee and walked out the door covered.
Glad he did, cause he's a worry...

Great to see you again Heather!
We've missed you! icon

Cheers, Ben.


Posted in Oral Imigran prescriptions now interchangable on 24 Apr, 2013 - 3:13 pm

Update:

Saturday morning I got my GP to write a Reg 24 script for 24 Imigran FDT tablets.
I telephoned it in to a chemist, where a diligent Pharmacist who works only Saturday mornings did check stock and warehouse levels on 2 X tablet boxes and ordered it in for me. He said it was available and would be in by Monday lunch time.

Monday afternoon. I attend the pharmacy where I had ordered.
Approaching the counter, from 20 feet away, I spot a stack of Imigran FDT boxes a foot high (mine). I paused for a few minutes to talk with one of the great staff there, the resident Vitamin expert who is helping me (and us all) by checking warehousing and inventories for regimen supplements, like vitamin K2 (MK-7). She provides great advice and is willing to entertain ideas like 10,000IU D3 dosing, with the right evidence in front of her.
She's a great help.

I wander over to the "platform of condescension" (That 18 inch high step that Pharmacists often need to be taller than you - it gives them a sense of authority...)
The Pharmacist looks at me. icon
He knows me.
He knows what I want.
He studiously ignores me.
I ask him pointedly "Do you have some Imigran in for me mate? In the name of Ben ..."
Without turning around, consulting a computer or any shelf stock, he replies "No, there is a.....(mumble, mumble...) issue.."

My friend the vitamin expert knows me, my CH and what an Imigran FDT box looks like. She goes over to the shelf of "Incoming goods" where she grabs the 12 X boxes of FDT for me and shakes her head. She filled the script and took me to the till to pay, shaking her head in frustration at her co-worker's lack of diligence.

For the 5th time straight in as many weeks - that a***hole pharmacist was going to send me down the road again, without medication, and without checking his shelves, PC or any incoming goods. The Imigran was 3 feet away from him.

He apologised, still mumbling bullshit about stock levels...
He seemed to think that 12 boxes (24 pills) were too many, again without researching.

I noticed this had attracted the attention of the head pharmacist and all 5 other staff, who were looking on. I took the opportunity to inform the offending Pharmacist about warehouse levels, shelf stock levels and a bit about cluster headache while I was at it, loud enough so all could hear. I provided him with his own printed copy of the above Imigran substitutions.

I made it clear that me having a CH attack on his pharmacy floor amidst his customers would not be a good look and left.

I doubt he will be stuffing me or any other Imigran users around again anytime soon.

(CPE) Continuing Practitioner Education never stops for a CHer.

Don't let 'em stuff you around.

Cheers, Ben.


Posted in Ambulance cover on 24 Apr, 2013 - 2:45 pm

Excellent BlueDevil, and thanks.

I'm a lifelong public patient and never had private health, so am totally ignorant of the ins and outs of private health policies. I did know that doubling up or "over-insuring" could be an issue, but I was not aware of these particular issues you've mentioned.
For sure, there are grey areas around levels of priority for call outs.
So I just wrote in my post "check your individual private health policy for details." in the hope that people would do just that.

Looks like it's better for all to have a paid-up Ambulance cover policy then!
It's so cheap too.

My cover says I can have any number of Ambulance rides per year.
I am only covered in my home state.
Call-out priorities appear ambiguous to me, so unless it's life-threatening, I get a lift to ER. (The one ride I did have was for atrial fibrillation and was deemed priority one, but only after the fact. This could have changed and landed me with a huge bill, if the Ambos had got picky about it...)
Chopper rides? Never thought of that, I better check...
Thanks for the heads up Bluedev..

If you think this info needs to be included or amended in my first post, please drop me the relevant info either here or in a PM and I will seek it out in each state/territory, IF this is to be made a tab on the left at a later date.

This sort of experience is invaluable and so much needed on the site.icon

Thanks again, I am sure you have helped many here!

Cheers, Ben.


Posted in Batch's anti-inflammatory regimen for CH on 24 Apr, 2013 - 8:57 am

Ho to all the good people of Clusterville,

It's just over 2 weeks since posted and Batch's Anti-Inflammatory regimen is at 200 views.

Would any CHers out there like to share their own experiences with using Batch's Anti-Inflammatory regimen?

Many people are interested and watching, as is Batch.
Perhaps some patient feedback on your experiences here would encourage more CHers to give it a try.

Cheers, Ben.


Posted in Ambulance cover on 23 Apr, 2013 - 10:43 am

Great to see you back Petericon
Seriously, the site could use more points of view!

Don't get me started on CH recognition, drugs, licencing, operating motor vehicles etc.
It's a major pet peeve for me and a huge can of worms.
That will need it's own thread, which I suspect would be long.

I had a huge post written about it, but the site dropped it.
Perhaps, the cyber-powers-that-be are trying to tell me something...
I saved it, but will spare the good people of Clusterville my thoughts on all that, for now...

As if to reinforce my position, this sort of shit is happening daily in my state. Oxycontin addled elderly people are making a habit of parking in shopfront or houses and killing people. This happened yesterday, about 4 kms from my house. Too many medical conditions and drugs are slipping through licensing and GP scrutiny.
This pedestrian, or the driver for that matter, could have been any one of us: http://m.adelaidenow.com.au/pedestrian-killed-at-ingle-farm/story-e
6frea6u-1226625855554

-------------------------------------------------------------------------------------------
Re: the ambulance info in CH.

I just put up the Ambulance info, because it's cheap and they did save my life in am major drug interaction - a product of CH treatment..
I think the clauses in most Ambulance insurance say, that if you are not a Priority 1 call (life-threatening, and a CH attack is not medically life-threatening in itself) you will be placed down the list as non-urgent treatment. An Ambulance will take considerably longer to get to you and THEN you still may get the bill for them attending a non-life threatening call out.

That's one expensive suck on an O2 bottle, through the wrong mask, after your CH has already peaked.

Going to emergency departments for treatment of a CH attack is completely pointless.
Anyone who does this is yet to discover the pointlessness of this entire exercise.
The only grounds left to attend ER, is CH related, not CH attack itself.

Drug interaction, contraindication, allergic reaction, mental health status are all different CH related issues that may give legitimate rise to the need for an ER visit.

My advice to people racing off to ER, (by ambulance or not) to treat CH attack as an emergency is this:

- You know a CH attack won't kill you.

- Calm down

- Pain is a physical phenomenon that you can deal with, suffering is a product of your psychological state that may cause you to think that your CH attack is an "emergency" when it clearly is not.

- Suck it up, you've done this before

- Use known abortive measures, if you have none, perhaps it's time to book Specialist care through an outpatient service and find some abortives or alternative preventives.

- Don't add to your CH woes by dragging family, vehicles, ambulances and ER staff into something that will not kill you and will be over soon.

- Don't put others lives in danger by driving mid CH attack to ER out of desperation for "treatment". The situation may well end up as life-threatening when you drive into someone...

- Don't let bystanders, or relatives whip up hysteria around your CH attack. Concerned relatives witnessing the torture of CH attack can often blow your symptoms out of proportion and are often the instigators of otherwise unnecessary "emergency" treatment.

After CHers have attended ER, they are often quick to have a go at ER staff about their lack of CH knowledge.
Stop blaming ER staff for lack of CH treatment.
They are trained to deal with acute trauma presentations, not short episodes of non life-threatening chronic disease.
This is why we have headache specialists and outpatient departments.

If you want an ugly scene, where your CH goes untreated, you get pissed off and end up with 6 security guards sitting on top of you - go to ER for CH attack. Even if ER do offer successful CH attack treatment - it will be something you can do at home.

(Before people have a go at me here - I can back myself.
I am an experienced CHer and ER veteran. I have consulted ER nursing staff, their superiors, their training, right up to the leading CH specialists. Their professional consensus across the entire hospital system is that ER is not the place to go for CH attack)

Cheers, Ben.


Posted in Newbie from Scotland on 22 Apr, 2013 - 8:08 pm

Yes.


Posted in CAFERGOT on 22 Apr, 2013 - 8:07 pm

Hi Sam,

Yes, Cafergot is no longer available, unfortunate for so many...
I consulted the manufacturer on this.
The only Australian machine that made it broke down in 2009 and the manufacturer did not replace it. Apparently the machine was too old and costly to bother repairing and low sales could not justify the cost of replacing a 30+ year old machine with a new one.

I don't use Cafergot myself, as it was a dismal failure for me in drug trials.
Other Cafergot users here (after GP prescription) have reported that any compounding Pharmacy can get it in and have capsules or injections made up. (I have not personally confirmed this).

I do know that compounding Pharmacies are thin on the ground, but usually one can be found servicing a wide area. In SA we have 5 or 6 compounding Pharmacies, servicing Central, North, South, East and Western suburbs.

A quick localised google search of the term "Compounding Pharmacy" on anyone's PC, smartphone, whatever, will show where they are.

I like the personal touch in dealing with Pharmacies, especially with the capacity for them to get it wrong. I would recommend CHers seeking any compounding work, to go direct to their local compounding Pharmacy in person.

Then they can obtain drug datasheets, one on one Pharmacist advice and supervision, also contraindications or drug interactions are often picked up at point of sale.
Seeking drugs online bypasses a lot of safety mechanisms, like a simple question from your Pharmacist.

This is so important, especially for those who may be taking MAOI's, Triptans, or other ergot-alkaloids like Methysergide (Deseril), or Dihydroergotamine (DHE) nasal spray for CH.

Specialists can sometimes prescribe drugs that need compounding work, that can be dispensed "in-house" at the pharmacy of a major hospital.

Thanks for the tip, Sam.
Many CHers appreciate any leads they can get on their medication of choice.

Cheers, Ben.


Posted in Oral Imigran prescriptions now interchangable on 22 Apr, 2013 - 10:46 am

Hi to all,

I am still tweaking the anti-inflammatory regimen and having all sorts of minor issues getting it right, but that's another story.
In the meantime, I am still having attacks, I probably shouldn't be "green" here...I got optimistic...

I have been having massive amounts of trouble getting Imigran FDT supplied from chemists. GPs prescribe boxes of 4 X tablets and these are the exact stock line that Pharmacists seek using their inventory software - boxes of 4 tablets.
Despite my having received 4 tablet boxes for years, it turns out that PBS approval is only for boxes of 2 X tablets.
The end result is the same with a REG 24 script - 24 tablets, it just comes in more boxes - IF they can supply them.

BUT, Pharmacists look directly at your script, then in the supply column specifically for the 4 tablet boxes and fail to seek warehouse advice on stock levels of the 2 Tablet boxes. They don't open another window on their PC to check...
If seeking Imigran, you may have to point this out.
Pharmacists will happily tell you that Imigran is "unavailable", "out of stock", or cite a "supply issue" or even a "manufacturing issue", all without consulting their software for alternative sources. (I checked with GSK, there are no supply or manufacturing issues).

After having to put a bomb under many a Pharmacist in the past few weeks and my requests for more information from GSK going unanswered, I contacted my specialist, who thankfully provided me with the info below.

Any Pharmacist may now substitute Imigran (FDT or other Sumatriptan tablet) with any of the "equivalent" Sumatriptan tablets listed below. After 3-4 weeks of delays, I am about to make some particular Pharmacists aware of this today, in no uncertain terms.
I have printed off a copy each for them.

No Pharmacist I dealt with (and there are many) had bothered to seek the 2 tablet boxes or alternative sources of Sumatriptan, until I tuned them in to the resource.

Now I find that a simple search of Pharmacies own stock inventories and warehousing, for the active ingredient "Sumatriptan" will have revealed any amount of available stock, going by different and generic names.

There's about 20 un-medicated CH attacks that I didn't have to have...
Thanks Pharmacists...

I should have driven many suburbs away to my old Pharmacist who does check this sort of stuff - they're not all this inept...
-------------------------------------------------------------------------------

One big issue I have with the below substitution is again, is lack of recognition of CH. Imigran is only prescribed for use in Migraine, despite numerous patients using it regularly in CH.

The article states this:
"There are no clinical efficacy data to show that sumatriptan fast-disintegrating tablets have a more rapid onset of effect in treating migraine than conventional sumatriptan tablets. In fasted healthy volunteers, the peak plasma concentration of sumatriptan for the 50 mg dose occurred on average 10 minutes earlier with the fast-disintegrating tablet, a difference that is probably not clinically important.1,2 Data from this study were accepted by the Therapeutic Goods Administration (TGA) as demonstrating bioequivalence of Imigran FDT 50 mg with Imigran 50 mg tablets.2"

10 minutes difference in achieving peak plasma concentration in Migraine (for which this drug is prescribed) may well be "not clinically important".
In my CH attacks, 10 minutes is an eternity and sometimes is the difference between a successful abortion of attack and failure, with oral Triptans. That's "clinically important" to me.

Whoever wrote this CRAP (1,2), never had a CH attack, or used a Triptan; another reason why we need CH recognition on the PBS.

At least, this info may get you out of a tight spot, if seeking Sumatriptan tablets.

Cheers, Ben.

--------------------------------------------------------------------------------------
Source NPS "Medicine Wise": http://www.nps.org.au/publications/health-professional/nps-radar/20
12/march-2012/brief-item-sumatriptan



Sumatriptan fast-disintegrating tablets (Imigran FDT) and substitution with other PBS-listed brands.

Published in NPS RADAR

Date published: 01 March 2012.

From 1 March 2012, sumatriptan fast-disintegrating tablets (Imigran FDT) 50 mg and other brands of sumatriptan 50 mg tablets listed on the Pharmaceutical Benefits Scheme (PBS) may be substituted for each other by pharmacists, unless indicated otherwise by the prescriber.

The Pharmaceutical Benefits Advisory Committee recommended for a note to be added to the listing of sumatriptan tablets 50 mg (all current brands) and sumatriptan fast-disintegrating tablet 50 mg, stating that they are equivalent for the purpose of substitution.

The usual indicator of brand equivalence in the Schedule is an ‘a’ next to the brand name. However, in this case sumatriptan fast-disintegrating tablets 50 mg and sumatriptan 50 mg tablets have different PBS item codes, so for clarity a note has also been added to the listings.

Evidence lacking for faster onset of action

There are no clinical efficacy data to show that sumatriptan fast-disintegrating tablets have a more rapid onset of effect in treating migraine than conventional sumatriptan tablets. In fasted healthy volunteers, the peak plasma concentration of sumatriptan for the 50 mg dose occurred on average 10 minutes earlier with the fast-disintegrating tablet, a difference that is probably not clinically important.1,2 Data from this study were accepted by the Therapeutic Goods Administration (TGA) as demonstrating bioequivalence of Imigran FDT 50 mg with Imigran 50 mg tablets.2 The other PBS-listed brands of sumatriptan 50 mg tablets have been shown to be bioequivalent to Imigran 50 mg tablets, and by indirect comparison, are accepted by the PBAC as being equivalent for the purpose of substitution to Imigran FDT 50 mg.

Substituting brands of sumatriptan

There are now 10 brands of sumatriptan tablets 50 mg on the PBS that pharmacists may substitute for each other (see box below). As for all medicines that are identified in the PBS as being interchangeable, substitute only if the prescriber allows and the patient consents.

PBS-listed brands of sumatriptan tablets 50 mg* that may be substituted

APO-Sumatriptan
Chem mart Sumatriptan
Imigran†
Imigran FDT
Pharmacor Sumatriptan 50
Sumagran 50
Sumatab
Sumatriptan-GA
Sumatriptan Generic Health
Terry White Chemists Sumatriptan

* Restricted to people with past migraines that have usually failed to respond to analgesics [Authority required (Streamlined)]

† A brand price premium is payable in addition to the standard PBS patient co-payment for concessional and general patients
References

1 Walls C, Lewis A, Bullman J, et al. Pharmacokinetic profile of a new form of sumatriptan tablets in healthy volunteers. Current Med Res Opin 2004;20:803-9. [PubMed]
2 GlaxoSmithKline Australia Pty Ltd. Imigran (tablets, injection and nasal spray). Product information. 16 May 2011


Posted in Ambulance cover on 21 Apr, 2013 - 9:24 am

Hi to all,

A recent post here on driving with CH got me thinking about Ambulance cover for CHers.
Although I personally think that calling an ambulance for CH is probably counter-productive, as nobody ever died from CH attack - (Time taken to get to you, resources are diverted from life-threatening situations where they are needed, inability to treat CH attack) However, some people may still need to call one for any number of medical reasons.

Better to pay a small sum up front for peace of mind, rather than add a massive Ambulance bill to your woes...it could be enough to give you a headache...

In CH treatment, I have experienced drug interactions and/or contraindications that have given rise to the need for emergency medical treatment - requiring the attendance of an Ambulance.
I have SA Ambulance cover. My one ride cost me $44 insurance for that year. It paid for itself. It would take me 20 years at that rate to equal the expense ($850) of an uninsured Ambulance ride.
Money well spent.

An uninsured priority one emergency ride in most Australian Ambulances, starts at around $850 and that's before they do any treatment or use any on-board resources...

People with private health insurance may already have Ambulance cover as part of their individual policy arrangements, there's no need to double up, or "over-insure" - but it's best to check the fine print on your individual private health policy for specific details.

People in country or regional areas should seek information on country or regional Ambulance services, arrangements may vary.

Ambulance insurance arrangements change frequently and vary considerably from state to state. Check out what is currently applicable to your individual circumstances, as insurance arrangements may change.

----------------------------------------------------------------------------------------
National Ambulance cover overview - state by state arrangements:

- All states and territories

Department of Veterans Affairs Gold Card holders are covered for state ambulance services in every state by the Department.

http://www.privatehealth.gov.au/healthinsurance/whatiscovered/ambul
ance.htm


http://www.stjohn.org.au/

note: As in SA, St John may not be the default ambulance provider for your state or area.
In SA, where St John no longer operate as the default Ambulance service, Ambulance cover is purchased directly from "SA Ambulance service."

--------------------------------------------------------------------------------------------

Individual State by state Ambulance cover websites:

Queensland:

Ambulance costs for Queensland residents are covered by the state government.

http://www.ambulance.qld.gov.au/subscribe/faq.asp

------------------------------------------------------------------------------------------

New South Wales:

NSW - State Ambulance Insurance Plan

The Ambulance Service of NSW no longer operates an Ambulance Contribution Scheme however this product is still available from several of the larger private health funds.
Health Care Concession Card, Pensioner Concession Card, and Commonwealth Seniors Health Card holders are entitled to free ambulance transport services. If you are not eligible for a concession and want to be covered, you can purchase insurance from a private health fund.

NSW: http://www.ambulance.nsw.gov.au/Accounts--Fees/Frequently-Asked-Que
stions.html


--------------------------------------------------------------------------------------------

Victoria:

Pensioner Concession Card and Healthcare Card holders are entitled to free ambulance transport services. If you are not eligible for a concession and want to be covered, you can purchase insurance from a private health fund or a subscription through the state ambulance service.

VIC: http://www.ambulance.vic.gov.au/Membership.html

---------------------------------------------------------------------------------------------

South Australia:

If you want ambulance cover you can purchase insurance from a private health fund or a subscription through the state ambulance service.

SA: http://www.saambulance.com.au/ProductsServices/AmbulanceCover.aspx[
/L]


---------------------------------------------------------------------------------------------

Northern Territory:

Pensioner Concession Card and Commonwealth Seniors Health Card holders are entitled to free ambulance transport services. If you are not eligible for a concession and want to be covered, you can purchase insurance from a private health fund or a subscription through the state ambulance service.

NT: http://www.stjohnnt.org.au/ambulance-service/ambulance-cover

-------------------------------------------------------------------------------------------------

Tasmania:

TAS: Ambulance costs for Tasmanian residents are covered by the state government.

-------------------------------------------------------------------------------------------------

Western Australia:

Aged Pensioner concession holders you may be entitled to free ambulance transport services. If you are not eligible for a concession and want to be covered, you can purchase insurance from a private health fund or a subscription through the state ambulance service.

WA: http://www.ambulance.net.au/content.asp?id=166#ambulancecover
WA country ambulance service: http://www.ambulance.net.au/content.asp?id=114

-----------------------------------------------------------------------------------------------------

Australian Capital Territory (ACT):

Health Care Concession Card and Pensioner Concession Card holders are entitled to free emergency ambulance services. If you are not eligible for a concession and want to be covered, you can purchase insurance from a private health fund.

Ambulance only cover
The ACT Ambulance Subscription Scheme is no longer adminstered by the NIB Health Fund; members of the public can compare registered health funds at the government initiative website, privatehealth.gov.au. If you are not eligible for Centrelink benefits, private health cover is available via contact with your preferred health care provider in the form of “Top Tier Hospital Cover” or “Ambulance only cover”, some funds will cover you whether you are transported or not. You can find the available health funds at privatehealth.gov.au.

-------------------------------------------------------------------------------------------------


Please let me know if there are any errors or omissions, I will fix or add them to this post. Perhaps we can get this up as a tab on the left, we'll see what happens.

If you have the time, have a look at becoming trained in Senior First Aid.
I have this certificate and my training once helped keep an elderly car accident victim alive, until an Ambulance arrived - He was OK.
Training well worth it, I was glad I could help and his family appreciates it to this day.

Cheers, Ben.


Posted in Verapamil hydrochloride on 18 Apr, 2013 - 10:38 pm

Glad they caught it Blue Dev.

It sure sounds like a minority reaction, but Pathology testing here is cheap, Medicare funded and easily accessible. There's no excuse for missing this.
A bit different in the US.

Always hassle your GP for pathology - if I had not done this, I would be dead - a fact.
There's no excuse for lack of monitoring from prescribing Doctors - it's harm by prescription pad. They know this.

Whoever prescribed the Verapamil, should be doing the pathology and ECGs.
Twice I was nearly killed by Verapamil and yes, chest pain was an issue.
No Neuro could see why, as the drug is prescribed to correct chest pain.
But it was a symptom for me. They never listened...

Somewhere (perhaps above) Goadsby warns of heart block in Verapamil for CH.
People associate this with the "industrial doses", but like you, I had reactions at relatively low doses, somewhere between 240 and 360mg.
I also had similar trouble with a close relative of verapamil - called diltiazem.

I remain eternally pissed off that one of this state's leading neurologists (you know who you are...) never commissioned ONE single ECG, whilst I was on escalating Verapamil doses. My heart arrhythmia caused by unmonitored Verapamil use now has me on Atenolol; for life. Anyone ever tried to stop taking a heart rhythm beta-blocker like Propranolol? It can kill you.

This is why I rabbit on about ECGs, pathology and scans.
If prescribing doctors do not note their patients bio-markers, then more people will be harmed.

Despite my own experiences, I note the weight of evidence in favour of verapamil use in CH. It works for many, and I too would not want to scare them off.
It should not be up to the patient to hound Docs for their own monitoring, but unfortunately - it is.

I think many people report drug outcomes when they go wrong, not so often when they go right. In CH, if a drug works, people are busy enjoying their lives.
I am glad of this, all I want to see is pain free days to all.

On the other hand, dead patients can't give feedback...

Whew, that was a close call for you...
Glad you're still with us Blue Dev.
Keep an eye or two on them in future mate.

Cheers, Ben.


Posted in What works for me on 17 Apr, 2013 - 1:28 pm

Benny,

Ahhh. C2, Cortisone.
Not the SPG blockade I was offered, but maybe it's an option for the future.
Certainly looks less invasive than the SPG version, that's for sure.
Didn't like the Neuro's description of what they would do around my eyeball at all.

"This shit" does work for some!
No scientists seem to know why, but the results are there.
(Nobody knows how Sumatriptan works either...but we know it does and all still use it.)

http://www.clusterheadaches.com/michael/2007_chronic-blockade.pdf[/
L]


http://www.americanheadachesociety.org/assets/1/7/Andrew_Blumenfeld
_and_Matthew_Robbins_-_Peripheral_Nerve_Blocks.pdf


http://www.acnr.co.uk/JA08/ACNRJA08_greater.pdf

It appears you are one of the "lucky ones", indeed.
Drug fee is an excellent outcome for an CHer.
Hope it all goes smooth and you get the same relief again Benny.

Great to hear.

Cheers, Ben.


Posted in What works for me on 17 Apr, 2013 - 9:34 am

Thanks Benny.

I did look back through your posts, but the thread titles had dropped off, I couldn't make much sense of it, or find the posts where you must've gone into detail.
I remember you did explain this before. But my memory is a bit foggy.
Sorry, my head ain't too good either despite the regimen, needs more tweaks...
(I will get onto the thread titles as soon as I can figure out how to re-name the old threads with no titles!)

Hope it all goes well.

Cheers, Ben.


Posted in What works for me on 16 Apr, 2013 - 10:42 pm

Hey Benny,

I'm curious. This procedure was offered to me 6 or 7 years back, but I was unclear of the exact procedure on offer. Don't worry, I'm not going to throw a thought grenade in here - the science is evidence based. Both yours and the clinical trial results speak for themselves.
A well-proven method by anyone's measure.
I wanted to learn more about the procedure proposed for me, but Neuros can be a silent and cryptic bunch at times...

They explained something to me about inflating a balloon-like device under or around my eyeball, to make sufficient room be able to inject what I think, was a Cortisone shot behind my eye. They left me unsure and confused.
I did not have the procedure done, but would like to consider it an option for the future.
My experience is lacking here.
A patient account would be excellent!!!

Could you please tell me more about what you had done?

Is the procedure you had called the SPG Sphenopalatine Ganglion Nerve Block?
(I had some confusion about a different type of nerve block possibly used in CH, in the Greater Occipital Nerve in the back of the head)

This sucker:

http://www.mirxprotocol.com/spgnerveblock.html

http://www.youtube.com/watch?feature=player_embedded&v=BqBKcALPN-I[
/L]


Any help would be much appreciated.

Cheers, Ben.


Posted in Batch's anti-inflammatory regimen for CH on 15 Apr, 2013 - 5:06 pm

Hi again to all,

User input on sourcing and your experiences in using the anti-inflammatory regimen ingredients are always appreciated and are more than welcome here. The more feedback, the merrier.

When sourcing supplements, for your health and to ensure the integrity, efficacy and safety of the regimen:

- Be sure to check the integrity of supplements by seeking clinical trial results.

- Be sure also, to check the integrity of vitamin and mineral suppliers, by reading user feedback on theirs and others review sites.

- Try to find the best info on shipping to be sure potential suppliers state to which countries they will ship.

- Compare disclaimer information on supplement provider's sites.

Very few have FDA approval, but some companies have voluntarily participated in independent third-party Good Manufacturing Practices (GMP) audits, long before the FDA released their final regulations for the dietary supplement industry.

Others Disclaimers are at best, disingenuous, like this one from a supplement provider; "Disclaimer: Statements made, or products sold through this website, have not been evaluated by the United States Food and Drug Administration. They are not intended to diagnose, treat, cure or prevent any disease. Products, services, information and other content provided on this Site, including information that may be provided on this Site directly or by linking to third-party websites are provided for informational purposes only."

Clearly not all vitamin supplement providers offer their users accountability, or share the same level of testing or confidence in their products.

- Have a look at Customs law and verify with Customs to see if your supplement of choice is a legal import and will not be withheld.

- Try to use your banking safety mechanisms and internet smarts to make sure you don't get ripped off, or sold a bottle of sugar pills - worse still, something dangerous.

If it looks too good to be true - it probably is.

Whilst K2 (MK-7) has not met Australian regulatory approval and will not be found on-shelf here, Batch (via myself) has provided the above tried and tested links in the previous posts, so that seekers of regimen K2 (MK-7) supplements may make an informed choice in who they deal with.

Happy hunting.

Cheers, Ben.icon


Posted in Batch's anti-inflammatory regimen for CH on 15 Apr, 2013 - 11:20 am

Thanks Sara and all,

Vitamin K2 availability in Australia.

We are running into a few issues finding reliable and good "bang for buck" K2 vitamins here in Australia. The TGA's Therapeutic Goods Register show no listing for K2 supplements here.
That's why we won't see them on shelf in the more...let's say "credible" Pharmacies.

Vitamin K status in the form of blood tests appears difficult to achieve.
The tests are complex, perhaps not routinely conducted (must verify this with Pathologists) and results are a rough estimate at best.
Proof of K2 in serum levels would be a desirable indicator, I would expect. This would be a good way to see if we are getting any real K2 MK-7 from these alternative sources.

The good news is, Batch is on it.
He is sifting a ton of literature on K2, variants and its availability for everyone. If it's like any other supplement I have looked at, not all are created equal and some give better bang-for-buck, which can be important across the life of the regimen.

Prices on different dosages and products vary considerably, depending on whose dosage instructions you take on board and whose prices you are willing to pay.

Amazon is off the menu for us, (on my default shipping address anyway) it appears that they won't ship Vitamins here. This is a shame, as some of their K2 complex vitamins look very promising for the regimen.

Thanks again to Batch for providing links, availability and cost per dose data:

Cost in USD/100 mcg... the suggested daily dose ~ cost/day.

http://www.vitacost.com/vitacost-vitamin-k2-mk-7-with-nattokinase-1
00-mcg-90-softgels

16.2 cents/100 mcg - OUT OF STOCK

http://www.herbalprovider.com/Vitamin-K2-MK-7
16.62 cents/100 mcg

http://www.swansonvitamins.com/superior-source-vitamin-k2-mk7-100-m
cg-60-tabs
24.9 cents/100 mcg

http://www.biotechpharmacal.com/catalog/mk-7-vitamin-k2/
38.6 cents/100 mcg

Solal Technologies, a South African company, offers a Vitamin K2 formulation of MK-4 and MK-7 for R179, or 63 cents (Australian)/day

http://www.solaltech.com/new/shop/index.php?act=viewProd&productId=
5186

---------------------------------------------------------------------------------------
One of the best all-round formulations of vitamin D3 (5000 IU/capsule plus cofactors and vitamin K2 MK-4 and MK-7 comes from Purity Products. It's formulated by the Executive Director of the Vitamin D Council, Dr. John J. Cannell, Vitamin D with Vitamin K is a next generation vitamin D complex that includes patented Super Boron, extra vitamin K2, zinc, and magnesium.

This is tantalisingly close to what we need, but is for sale only in the US:

http://www.purityproducts.com/purityEcommerce/control/productDetail
?productId=dr-cannells-vitamin-d-vitamin-k


At the best price for a 30 day supply with automatic delivery, 2 capsules taken twice a day for a total of 10,000 IU/day vitamin D3 plus K2 and cofactors) costs $40 USD or $1.33/day. Unfortunately, it's a bit pricey and only offered in the US... for now.

I have supporting research links and studies if anyone wants to further investigate. Feel free to drop me a PM and I will paste in the links for those doing K2 (MK-4 and MK-7) research.

Thanks again to Batch!
He makes me sound like I know what I'm talking about...icon

Cheers, Ben.


Posted in Old anti-inflammatory thread on 14 Apr, 2013 - 11:58 pm

Hi to all,

The Anit-Inflammatory Regimen and Survey, by Pete "Batch " Batcheller.

Direct link to the US site, for the Anti-inflammatory regimen, with regular updates and current safety info:
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


Current discussion on the US site, with Q&A from Batch can be found on his thread here: "123 days Pain Free and I think I know why.", by Batch.
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=129196941
6/1350#1359


Current discussion on this site, regarding Australian use of the regimen should go here: http://www.clusterheadaches.com.au/forum_posts.php?id=2985&start=0[
/L]


Updates on sourcing local Vitamin & Mineral supplements, Aussie user experiences, contraindications and any important safety issues will be posted on the above thread on this site. Always check with Batch's threads, as the science is updated regularly.
----------------------------------------------------------------------------------------------

****This thread contains inaccuracies and omissions of important co-factors, contraindications and safety measures, most of which are my own doing...
The above links in this post should be consulted for the latest updates.****

For users of Batch's regimen, I will lock this thread to further discussion here, and leave it posted purely as "historical" information.

I don't want to stifle discussion here, or for anyone to feel unwelcome, censored, or left out of discussion on this thread, but the new thread is the place to continue discussion, for the safety of all regimen users.

It's just a safety and currency of information issue.
If there are any objections, feel free to PM me.
I or any of the Moderators here can always unlock it again.

See ya over on the new thread.

Cheers, Ben.


Posted in My alternative treatment on 14 Apr, 2013 - 8:20 pm

So, I concluded that dr's/drugs were of no use, so decided to look into alternative therapies.


There is no doubt that modern medicine as it is now practiced needs to improve its relations with patients, and that some of the criticisms leveled against it by people such as Weil -- and by many more within the medical establishment itself -- are valid. There also can be no doubt that a few of the "natural" medicines and healing methods now being used by practitioners of alternative medicine will prove, after testing, to be safe and effective. This, after all, has been the way in which many important therapeutic agents and treatments have found their way into standard medical practice in the past. Mainstream medicine should continue to be open to the testing of selected unconventional treatments. In keeping an open mind, however, the medical establishment in this country must not lose its scientific compass or weaken its commitment to rational thought and the rule of evidence.

There are not two kinds of medicine, one conventional and the other unconventional, that can be practiced jointly in a new kind of "integrative medicine." Nor, as Andrew Weil and his friends also would have us believe, are there two kinds of thinking, or two ways to find out which treatments work and which do not. In the best kind of medical practice, all proposed treatments must be tested objectively. In the end, there will only be treatments that pass that test and those that do not, those that are proven worthwhile and those that are not. Can there be any reasonable "alternative"?

- Arnold S. Relman, former editor of The New England Journal of Medicine.


Posted in Batch's anti-inflammatory regimen for CH on 13 Apr, 2013 - 9:32 am

P.S - I have been taking 10,000IU of D3 for quite a while and D3 loading doses. Day 3 of regimen for me, with co-factors (except K2, yet to locate). From 5-6 attacks aborted with Imigran 4 days ago, to almost entirely PAIN FREE today.
I have not taken Imigran in 3 days now.
This never happens - my Chronic CH tapers off over 2-3 months, if it ever stops.
No preventive used in the history of CH has worked this fast for me (Except transitional use of high dose Prednisolone) - and I have tried them all. (My specialist says we have scraped the barrel - it's official, we have tried everything)

Through 70 drug trials and 34+ years of chronic, intractable CH, I have never seen results either this fast (except the high dose Pred) or this side-effect free. This is not a spontaneous CH remission.
Autonomous attacks still occur in me, but severity is 0.5, where it was 10.
Frequency is 1 or 2 per day and dropping, where it was 5-6.
Duration, well it really isn't a concern, due to the reduced severity and frequency. All this by DAY 3 everyone...

Through my own experience in CH and vast amounts of pill popping, I can probably exclude any placebo or nocebo response. Wanting something to work and seeing a positive response never occurred in my 70 drug trials and I don't think it has now.

Early days for me yet. When it comes to trials of new CH treatments, I am a cynic and will wait and see what happens.

I think Batch is really onto something.
Try it and see.

Pain free days to all.

Cheers, Ben. iconiconicon

**Update: Day 7 - My D3 levels have still not been measured by pathology test, so unable to tell if I am officially in "The Green Zone" yet. Waiting one moth before pathology testing.
Still getting the occasional attack, mostly 1 at night.
Using Imigran injection for those.
This level of improvement cannot be understated!
Beats the hell outta 4-6 attacks per day, I was having.
The regimen needs time, blood testing and individual tweaks!
Fine tuning in progress...
Within RDAs, I am lowering Magnesium, seeking alternative sources of Calcium through diet, changing multivitamin etc etc.
I can feel the merits in this - my brain tells me something is changing for the better. It's this or destructive surgery for me, so I'm stickin' to it!

Ben.


Posted in Batch's anti-inflammatory regimen for CH on 10 Apr, 2013 - 4:09 pm

LOCALISING THE REGIMEN.

UPDATE ON SOURCING AUSTRALIAN LOCAL INGREDIENTS ON-SHELF FOR THE REGIMEN.

See this link, or those in previous posts for the current "recipe", updates and co-factors.
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


If anyone is having trouble finding the right Vitamin supplements in Pharmacies with a print off of the regimen in hand, you're not alone.

Australian Pharmacists can be quick to condemn alleged "high doses" of Vitamin D3. To be fair, they are trained in "normal" safe ranges on supplements (or Recommended Daily Allowance - RDAs), when giving Pharmacist advice. They are unaware of what we are trying to achieve in CH specifically here and will often recommend against high Vitamin D dosing, with little or no evidence to back their claims.

Show them the graphs and studies Batch has provided and most will soon come around. Check out The Vitamin D Council's recommended D3 doses and many studies that support higher D3 dosing in non-migraine Headache conditions. I found some of the more knowledgeable Pharmacists most helpful, even encouraging. If they don't want to help, find another Pharmacist. Resistance to these ideas here is far stronger than in the US, where they routinely sell D3 in 5,000IU or 10,000IU capsules over the counter.

When seeking D3 capsules in concentrations higher than 1000IU, there is not much on-shelf in Australia. The Pharmaceutical Benefits Scheme (PBS) has higher dosages available via GP prescription; in powders, oils, gels etc. See your GP to get your D3 blood levels tested and while you're there, ask your GP for a supervised prescription of higher dose D3 if you want to add loading doses to get your D3 levels up faster.

In close consultation with your GP, follow Batch's instructions on his links (provided above and throughout) on D3 dosing schedules, seeking regular blood tests and always follow up on D3 serum level tests with your GP.

-------------------------------------------------------------------------------------------

I post this list of Vitamins and co-factors here (below) for reference purposes only, as the regimen may change. Keep a close eye on the link to the regimen for recipe updates and your safety.
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


List of vitamins and co-factors we are seeking:

Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360mg/day, DHA 240 mg/day)
Vitamin D3 * - 10,000 IU/day
Calcium ** - 500 mg/day (calcium citrate preferred)
Magnesium - 400 mg/day (magnesium citrate or magnesium gluconate)
Vitamin K2*** - 120 mcg/day (MK-7)
Vitamin A **** - 900 mcg (3,000 IU) for men and
- 700 mcg (2,333 IU) for women
Zinc - 10 mg/day
Boron - 1 mg/day


With the exception of vitamin D and vitamin K2 MK-7, all the rest of the supplements in the anti-inflammatory regimen should be taken at Recommended Daily Allowance (RDA) or less.

Research and know your Vitamin and mineral - Recommended Daily Allowance (RDA).

The United States National Library of Medicine's, Dietary supplement's labels guide. An excellent resource to locate brands, check the studies, find datasheets and answer any questions about your Vitamin supplements and RDA.
Vitamins: http://dietarysupplements.nlm.nih.gov/dietary/vitaminIngred.jsp
Minerals:
http://dietarysupplements.nlm.nih.gov/dietary/mineralIngred.jsp

-------------------------------------------------------------------------------------------

Current On-shelf availability.

Fish Oil.
Example: Swisse High Strength Fish Oil, 1500mg.
Contains Omega 3 marine triglycerides 450mg as:
EPA 270mg
DHA 180mg
2 X these capsules per day should fulfill Batch's criteria.

Swisse advise dosages of up to 6 capsules per day in joint health, so safety of 2 of these capsules is well within range.

http://www.chemistwarehouse.com.au/product.asp?id=61283&pname=Swiss
e+Ultiboost+High+Strength+1500mg++Wild+Fish+Oil+200+capsules

-----------------------------------------------------------------------------------------

Vitamin D3.
Example:
Swisse Ultiboost Vitamin D 250 Capsules, 1000IU.
Ostelin D3 1000IU oilcaps.
Contains oil/gel capsules (not tablets).

10 X of these capsules = D3 at 10,000IU, the daily D3 dose we are after. Safety data and D3 dosing strategy is here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


http://www.chemistwarehouse.com.au/product.asp?id=63243&pname=Swiss
e+Ultiboost+Vitamin+D+250+Capsules

-----------------------------------------------------------------------------------------

Calcium Citrate.
I have found Citracal in Amcal Pharmacies here for between $12-$18.
It is also available on-shelf at other Pharmacies.

Calcium citrate (1.19g equiv, elemental Calcium 250mg)
I bought the pink labelled one in the picture on the Citracal site below.
The Citracal site. http://www.citracal.com.au/

**Warning: Verapamil users! Calcium supplements can interfere with Calcium channel-blockers, like Verapamil. Beta blocker users of Atenolol (Noten, tensig etc) and Propranolol should also be wary of Calcium supplement interactions. Calcium supplements may alter the way in which Atenolol and Propranolol behave and the way in which they are absorbed. See Batch's regimen link for more detail.
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


Calcium information and RDA: http://dietarysupplements.nlm.nih.gov/dietary/ingredDetail.jsp?cont
ain=Calcium&id=1041


http://ods.od.nih.gov/factsheets/Calcium-HealthProfessional/
-------------------------------------------------------------------------------------------

Magnesium.
Batch advises using either Magnesium glycinate, Magnesium malate, or Magnesium citrate.

These are on-shelf in most pharmacies.
Feel free to seek alternative brands.

Swisse Magnesium 60 Tablets
Magnesium 150mg, (Magnesium Citrate 927.64mg)
http://www.chemistwarehouse.com.au/product.asp?id=66393&pname=Swiss
e+Ultiboost+Magnesium+120+Tablets


Sara has also made me aware of a more tolerable form of Magnesium - An organic form of magnesium - "Magnesium Orotate".
Thanks Sara.

Calcium information and RDA: http://dietarysupplements.nlm.nih.gov/dietary/ingredDetail.jsp?cont
ain=Magnesium&id=1156


http://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/

-----------------------------------------------------------------------------------------

Due to lack of an Australian regulatory approval (TGA therapeutic goods register) Vitamin K2 menaquinone-7 (MK-7) "on-shelf" in Australian Pharmacies is not yet available. Most local wholesaler's inventory lists do not show any available K2 supplement, I am working with Pharmacists to establish Australian stock lines of K2 (MK-7). Regimen users will have to seek it from online Pharmacies in Australia, or perhaps ship it in from outside of Australia.

See links to vitamin K2 (MK7) suppliers in the posts following this one. Batch came up with some good ones.

***Warning: Blood thinners such as Warfarin or Coumadin are contraindicated with vitamin K2 use. See Batch's original thread for details on K2 warnings.
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


Vitamin K2 information and RDA: http://dietarysupplements.nlm.nih.gov/dietary/ingredDetail.jsp?cont
ain=Vitamin+K2+%28as+menatetrenone%29&id=4547

-------------------------------------------------------------------------------------------

Vitamin A and Zinc.
You may want to rely on your diet and/or your Multi-vitamin, (like Centrum) for your Vitamin A and Zinc intake.

http://www.centrum.com/

Feel free to find an alternative source of Vit A and Zinc with respect to RDA.

The regimen recommends Vit A at daily doses of 900mcg/3000IU for men, 700mcg/2,333IU for Women.

There are known dangers in using excess Vitamin A, so err on the side of caution. Know your RDAs.

****WARNING: When taken in excess of 3000 micrograms retinol equivalents, vitamin A can cause birth defects. If you are pregnant - or considering becoming pregnant - do not take vitamin A supplements without consulting your Doctor or Pharmacist. The recommended daily amount of Vitamin A from ALL SOURCES is 700 micrograms retinol equivalents for Women and 900 micrograms retinol equivalent for Men.

Check your diet for sources of betacarotene, a precursor of Vitamin A.
A daily serving of carrots, spinach, or squash are all a great source of beta carotine and will meet your RDA (Recommended Daily Allowance) or RDI. Know your Vitamin A intake and proceed with caution. (If you are taking a Multi-vitamin like Centrum - read it's Vitamin A retinol equivalent (R.E) and factor this in.)

Again, Batch's important safety data is here:
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


Vitamin A information and RDA: http://dietarysupplements.nlm.nih.gov/dietary/ingredDetail.jsp?cont
ain=Vitamin+A&id=1282


http://ods.od.nih.gov/factsheets/VitaminA-HealthProfessional/

Zinc information and RDA: http://dietarysupplements.nlm.nih.gov/dietary/ingredDetail.jsp?cont
ain=Zinc&id=1300


http://ods.od.nih.gov/factsheets/Zinc-HealthProfessional/
-------------------------------------------------------------------------------------------

Boron.
You can get this from a couple of teaspoons of Honey.

Boron information and RDA: http://dietarysupplements.nlm.nih.gov/dietary/ingredDetail.jsp?cont
ain=Boron&id=1033


http://www.nlm.nih.gov/medlineplus/druginfo/natural/894.html

-----------------------------------------------------------------------------------------

Here, I have made my first attempt at Australian "on-shelf" adaption of regimen Vitamins and co-factors. In an effort to focus on safety and availability, I have gone down the "on-shelf" track, in order to avoid some disingenuous international sellers, Ebay and any postal or Customs issues. Also when you buy "on-shelf" here, there is TGA approval, personal 1 on 1 Pharmacist advice and guidance available, that you will not find online. GPs too, are familiar with "on-shelf" product here in Australia and are better versed to deal with these than unknown overseas or backyarder's versions. (Some supplements on offer online were shockers in my research). So, I hit pharmacies and their wholesalers here online and on foot, for true reflections of what is available in Australia.

Localising the regimen is challenging in Australia, I am sure it will need tweaks. I have far from exhausted all possibilities.

The original thread link, posted throughout is the place to look for all info regarding the regimen.

Not all of the co-factors need to be sourced in a bottle.
Dietary factors can assist in bringing CH relief.
Honey for Boron, more sunshine for Vitamin D, carrots and vegetables mentioned (via beta carotene) for Vitamin A.

The world and the internet are a huge place...
I am sure CHers will find Aussie resources I have not.
Feel free to find other brands, other sources, contribute your ideas here, we will all benefit.

That's what this thread is for.

As always, check Batch's thread (Yeah, I know - again).
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4

Consult closely with your GP and/or specialists on all of this.

Be sure to have regular pathology tests and discussions with your GP. Know your vitamins, read up on them, know your RDAs, potential safety issues and check all vitamin & mineral supplements for known interactions with all of your CH medications. If anything goes wrong, seek prompt medical advice from a qualified medical professional.

Hopefully, we are looking toward some pain free days.
If you do well - don't forget the survey!!!!!!

Whew... smile

Cheers, Ben.


Posted in Batch's anti-inflammatory regimen for CH on 10 Apr, 2013 - 8:43 am

Hi to all,

I have a few PMs from people, indicating that they would like a straightforward recipe, so they can seek vitamins and co-factors from their Pharmacies and begin taking the regimen.

The following link will take you to the post titled: "Anti-Inflammatory Regimen and Survey", on the CH.com Forum in the US.

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


This link also contains the latest list of supplements used in this regimen (Some call it the Recipe) suggested by Batch. He keeps this list updated on a frequent basis.

Be sure to see your GP after 30 days on this regimen for a blood test of your 25(OH)D serum concentration if possible. This is particularly important if you've been taking more than ten thousand IU/day of vitamin D3. Once you have the results of this 30-day blood test in hand, be sure to take the Anti-Inflammatory Regimen Survey.

If you have problems reaching the US CH.com web site, and you want to take this survey, click on the following link:

http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c
5ce971022f6.


If you're still having problems getting to this site, please let me know.

Cheers, Ben


Posted in Batch's anti-inflammatory regimen for CH on 09 Apr, 2013 - 10:34 pm

Hi Dev,

I would say so, if you want a shot at potential CH relief, with no real side-effects.
Batch explains that ramping up D3 serum levels, together with the co-factors can take a while before positive responses in CH are reported. Most stay on the regimen, even if episodic, it has many health benefits beyond CH - "So far only a handful of CH'ers have stopped taking this regimen and that includes the episodic CH'ers. Most of them are continuing on this regimen the year round in order to avoid going back in cycle."

dev1980 said: "still spend time getting prepared for the next bout. That was the problem when i was in cycle i was putting it off and then they went away and came back and i was in the same place."


With respect to the use of the regimen for those in CH remission; I think you answered your own question a couple of posts back Dev, but I know where you are coming from.
If you know the suckers will be back, planning ahead is a good idea, indeed.

Cheers, Ben.


Posted in Old anti-inflammatory thread on 07 Apr, 2013 - 12:24 pm

Hi Ange R,

Apologies if I covered this somewhere before, but a bit strapped for time, so can't look back through all posts to see it.

Indocid response is good in PH.
Pretty sure you have done that one (from my shaky memory).

There is a new thread posted on Batch's anti-inflammatory regimen today, with direct supervision from Batch. I am working closely with him to bring it to Aussies.
http://www.clusterheadaches.com.au/forum_posts.php?id=2985&start=0[
/L]

The new thread should probably supersede any old discussions on the regimen, as we have the man himself on board this time.

I have some grunt work to do here yet, re: finding local ingredients of the right type.
I am zeroing in on Australian high dose 5000IU or even 10,000IU gel/oil D3 caps as we speak. Also locating the correct variants of Calcium (Citrate) and Magnesium types required. I will post on that thread, when I have rustled up an on-shelf, localised regimen for Aussies.

I'm on it.

As for it working in PH.
I am unsure, but would give it a try.
Perhaps you could be one of the few PH patients that tries the regimen.
I'm sure Batch would be delighted to know your experiences with it, even in PH.

Let us know how you go - it's worth a shot.
From what I understand Indocid is a powerful (although undesirable) anti-inflammatory.
I know that Indocid will burn a hole in your gut.
I know the regimen won't.
Safer is better, I think.

Perhaps the regimen has relevance in PH too.
I will check with some people and see what they reckon.
It's definitely worth a shot.

Cheers, Ben.


Posted in Batch's anti-inflammatory regimen for CH on 07 Apr, 2013 - 8:46 am

Hi to all,

Pete "Batch" Batcheller's Anti-inflammatory regimen for CH.

I have been in contact with Batch about bringing the latest version and facts about the Anti-Inflammatory Regimen to the Australian site. I will be working closely with Batch to bring all the latest research here, so we can implement it in Australia and try to get some of the CH relief that so many (81% of respondents) now report in Batch's surveys.

Here's the details.
-------------------------------------------------------------------------------------------
Disclaimer: The following Anti-Inflammatory Regimen, treatment protocol and dosing guide to prevent cluster headaches are provided for information purposes only. Discuss them with your primary care physician (PCP) or neurologist whoever is most aware of your overall medical health and other prescribed medications before starting this regimen.
-------------------------------------------------------------------------------------------
For CH'ers new to this regimen, having your vitamin D3 status checked is the first step. Do this by asking your GP or neurologist for a blood test for 25(OH)D. That's the serum level metabolite of vitamin D3 that's used to measure its status. Be sure to tell your GP or neurologist why you want it tested and take along a copy of this post.

The normal reference range for 25(OH)D is 30 to 100 ng/mL (75 to 250 nmol/L). Unfortunately, most physicians will say you're "normal" with 31 ng/mL... That's way off the mark for CH'ers... We need a target 25(OH)D serum concentration of 85 ng/mL, (212.5 nmol/L) and that will take the average adult 10,000 IU/day vitamin D3 over a 4 to 5-month period to attain.

The latest results from the online survey Batch has been running for over a year indicate 68 of the 84 CH'ers (81%) using this regimen who completed the online survey have experienced a significant reduction in the frequency, severity and duration of their CH. 60 are completely pain free. Their response times are illustrated in the following chart:

http://i378.photobucket.com/albums/oo230/F8Driver/Anti-inflammatoryRegimenResponse_zpsd9f2d587.jpg

As you can see... 75% of the CH'ers who experienced a favourable response had it occur within the first 10 days... On the other hand... some CH'ers took as long as two months to achieve a pain free response.

This isn't a regimen you take for a few days then quit... If you bail out of this regimen after just a week because you didn't have a favourable response... you could easily miss out on the benefits of a very effective and inexpensive preventative... with no real side effects.

Stick with this regimen for at least a month then see your GP for another blood test for 25(OH)D. Even if you don't respond in a month, there's still hope as there's usually a reason why, but you'll need the blood test for starters. When you have the blood test results, please take the anti-inflammatory survey. To start this survey, click on the following link:

http://www.esurveyspro.com/Survey.aspx?id=fb8a2415-629f-4ebc-907c-c
5ce971022f6


The next chart illustrates the time 25(OH)D serum concentration response to various doses of vitamin D3:

http://i378.photobucket.com/albums/oo230/F8Driver/25OHDResponsetoVitaminD3Dose.gif

The top line indicates the average response to a vitamin D3 dose of 10,000 IU/day. As you can see the increase in 25(OH)D serum concentration increases rapidly for the first 10 days then it takes on an exponential shape, stabilizing in an equilibrium by the 4th to 5th month. As you can also see, the higher the vitamin D3 dose, the higher the equilibrium concentration of 25(OH)D.

The green color band indicates the range of 25(OH)D serum concentrations (60 to 110 ng/mL) reported by CH'ers after going pain free while taking the anti-inflammatory regimen. Batch indicates the running tally of CH'ers at CH.com (US) who have gone pain free on this regimen is 240 out of 300 (80%) who started it. So far only a handful of CH'ers have stopped taking this regimen and that includes the episodic CH'ers. Most of them are continuing on this regimen the year round in order to avoid going back in cycle.

Most CH'ers tend get impatient when CH is hammering away and want medications to work as fast as possible. What Batch has found is that an accelerated vitamin D3 dosing schedule increases the 25(OH)D response so CH'ers can go pain free a little faster.

The most popular and well tolerated accelerated vitamin D3 dosing schedule is 20,000 IU/day plus a 50,000 IU loading dose once a week. Batch indicates you can stay on this schedule for a month or until you go pain free, which ever occurs first and then drop back to a maintenance dose of 10,000 IU/day vitamin D3.

At the end of a month on this schedule, regardless of the results, you'll need to see your GP or neurologist for another 25(OH)D blood test then adjust your vitamin D3 intake down to a maintenance dose of 10,000 IU/day. The target 25(OH)D serum concentration of 85 ng/mL, (212.5 nmol/L).

Batch indicates the rational for maintaining this serum concentration of 25(OH)D is simple... This regimen isn't a cure and the 25(OH)D half life is a week to 10 days... Go without any vitamin D3 for that length of time and you'll fall out of the "Green Zone" and the CH attacks will come after you.

In case you're wondering about vitamin D3 intoxication... the dosing schedules Batch suggests in this regimen are conservative and very safe as illustrated in the following chart.

http://i378.photobucket.com/albums/oo230/F8Driver/Safe-ToxicVD3Chart_zps3a2ea633.jpg

Notes:
- The toxicity reports are generally for Vitamin D monotherapy
- Magnesium, Vitamin K2, and other COFACTORS are needed
- True toxicity (with cofactors) is probably much higher than the monotherapy line on the chart

Source: http://www.vitamindwiki.com/Overview+Toxicity+of+vitamin+D
------------------------------------------------------------------------------------------

Finally, don't forget to take the rest of this regimen. The vitamin D3 cofactors are very important and an essential part of this regimen.

The 2000 mg/day Omega 3 Fish Oil acts as an anti-inflammatory and also aids in vitamin D3 absorption.

500 mg/day calcium (calcium citrate) helps maintain bone mineral density (BMD).

The most important vitamin D3 cofactor is magnesium. It's essential in vitamin D3 metabolism.

Vitamin D3 at the doses used in this regimen also depletes magnesium so you'll need 400 mg/day up to as much as 1000 mg/day if needed.

Magnesium glycinate, magnesium malate or magnesium citrate are the preferred magnesium compounds to take. All three have a high bioavailability. Magnesium glycinate has the least laxative effect at higher doses... Magnesium oxide has the lowest bioavailability and can also make you loose as a goose.

Vitamin K2 MK-7 helps direct serum calcium away from soft tissues and arteries towards building BMD. 120 mcg/day should be sufficient.

Vitamin A (retinol) is also essential. It plays a significant role in the extra-renal autocrine path of vitamin D3 metabolism that takes place at the cellular level throughout the body. This is the mode of vitamin D3 metabolism we think is responsible for the cluster headache preventative effect... A little vitamin A goes a long way. Don't take more than 900 mcg/day (3,000 IU/day).

Some CH'ers want to take a multi-vitamin with B12 and vitamin C. Batch takes a multi-vitamin called Centrum Silver. He uses it as his source of vitamin A and vitamin K.

The data Batch has collected from the online survey indicates this regimen can be taken with nearly all the standard CH meds; although there are a few studies that have found that steriods slow vitamin D3 metabolism. CH'ers taking blood thinners like coumadin (warfarin), rat poison as Batch calls it, for a heart condition, need to discuss the vitamin K2 with their physician before taking it. Vitamin K1 and K2 are contraindicated for people taking blood thinners.

I will keep the site updated.

Please report your experiences taking the regimen. Help Batch to help us by clicking on the survey (link above) and reporting your outcomes. The feedback data from patients will help to get GPs, Doctors, Neurologists and other Headache Specialists to sit up, take notice and bring even more hope and relief to CHers worldwide.

Pain free days to all.

Cheers, Ben.


Posted in is this even working on 05 Apr, 2013 - 8:48 pm

Sonja,

If you're sick of taking pills and are a believer that a cure will be provided by nature, as many of us are, perhaps you want a look at Batch's Vitamin D3 regimen.
Many bits and pieces of it appear here on this site, posted by people that have lifted it out of context and mal-adapted it.

Best to go straight to the source, speak to the man himself.

It is a vitamin regimen that is pretty simple to follow, with pretty complicated things going on in how it works. But the patients or rather respondents have reported 81% efficacy so far, as of Feb 2013. It seems to be powerful stuff.

Pete "Batch" Bachelor is the creator of the regimen.
Himself a 50 year CH veteran and a trained Chemist, I understand.
He is a really charming true Gentleman, rare to find these days. His continuing efforts working with CH patients, specialists and Doctors globally, confirm his seriousness in seeing the idea through and his commitment to helping others with CH.
His patience is commendable. In the face of so many questions from everywhere, he hasn't flinched once. I have the highest respect not just for what he is doing, but how he is doing it. Harvesting data from patients worldwide, so the regimen can be tested in Phase 1 clinical trials. The ball is rolling on this one and even if Batch fell off his perch tomorrow, his work would be continued by all those it has helped.

He is always contactable, answers my stupid if not obvious questions with humility and grace, and he is always there to help.

Check out the original version here:
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=132404640
4


Unlike all the versions re-reported around this site - this is the original and the best.
Batch meticulously lists all the benefits, risks, co-factors, procedures from not only an educated scientist's point of view, but also a CHers one. He understands the pain.

Join up to the site and you can talk on his thread "123 Pain Free days and I think I know why": http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=129196941
6


Batch can be PMd, Emailed, Skyped or just ask any questions on his thread, he will be back with an answer before the Earth has rotated one full turn.

I can't thank him enough and neither can 1134 other people.
His thread has 100,000 views now.
It is making waves around the CH world.

Once it is clinically validated, it could prove to be the next major advance in how we look at treating CH.

Here's to alternative thinkers! smile

Hope this is the sort of thing you are looking for Sonja.

Cheers, Ben.


Posted in is this even working on 05 Apr, 2013 - 1:47 pm

Sonja,

Double post fixed.
I sent you a PM.

Cheers, Ben.


Posted in is this even working on 05 Apr, 2013 - 12:03 am

Nothing melodramatic about head pain, Sonja.
It's a bitch, i am reminded about every 4-5 hours at the moment...
I sympathise with your situation, it must suck...

If you want answers, they best come from Doctors.
I know you have been there, done that, but we're not experts here.
You know for me to be responsible, I have to urge you to speak again to medical professionals.

It sounds like a tricky one to me.
CH is usually unilateral - strictly one side of head.
You report pain on both sides of head and some longer and shorter durations which concern me. I hope your Head CT and/or MRI scans are all clear.

Bear with me, this could get complicated.
(This below, is what Doctors will use to diagnose CH)

The International Headache Society (IHS) criteria for cluster headache says the following, below.

(Does this sound familiar to you?
Or do you experience something different to the description below?)

From the IHS--------------------------------------------------------------------------------------
Description:
Acute cluster headache

Attacks of severe, strictly unilateral pain which is orbital, supraorbital, temporal or in any combination of these sites, lasting 15-180 minutes and occurring from once every other day to 8 times a day. The attacks are associated with one or more of the following, all of which are ipsilateral: conjunctival injection, lacrimation, nasal congestion, rhinorrhoea, forehead and facial sweating, miosis, ptosis, eyelid oedema. Most patients are restless or agitated during an attack.

Diagnostic criteria:

A - At least 5 attacks fulfilling criteria B-D

B - Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes if untreated (note 1, below)

C - Headache is accompanied by at least one of the following:
1 ipsilateral conjunctival injection and/or lacrimation
2 ipsilateral nasal congestion and/or rhinorrhoea
3 ipsilateral eyelid oedema
4 ipsilateral forehead and facial sweating
5 ipsilateral miosis and/or ptosis
6 a sense of restlessness or agitation

D- Attacks have a frequency from one every other day to 8 per day (note 2, below)

E- Not attributed to another disorder (note 3, below)

Note:

1 - During part (but less than half) of the time-course of cluster headache, attacks may be less severe and/or of shorter or longer duration.

2 - During part (but less than half) of the time-course of cluster headache, attacks may be less frequent.

3 - History and physical and neurological examinations do not suggest any of the disorders listed in groups 5-12, or history and/or physical and/or neurological examinations do suggest such disorder but it is ruled out by appropriate investigations, or such disorder is present but attacks do not occur for the first time in close temporal relation to the disorder.

----------------------------------------------------------------------------------------------------------

I know it's all medical jargon to most.
But what you say, doesn't seem like typical CH.
That's not to say it isn't either.
It is highly variable, but given your reported symptoms and circumstances around CH diagnosis, I would go out on a limb here and suggest that perhaps the Docs got it wrong? Maybe you have another headache type, or even 2 different headache types.
There are many headache types that mimic CH, some nearly as painful.

If you are going back in for possible investigation, tests or possible new medications, it might be a good idea to try to create a snapshot of what your headaches are like by using a Headache diary.

I usually link people to another one, but I just found a local Australian NPS one that explains how to use it very well: http://www.nps.org.au/__data/assets/pdf_file/0010/160003/NPS_Headac
he_Diary_0612.pdf


Print off a couple of these, let me know if you have any issues viewing it, downloading it, or printing it. I will talk you through it.
If you have any problems, drop me a PM and I can send info (like attachment PDFs) via email to you, if you wish.

Filling in one of these diaries will establish a Headache pattern.
It's bloody hard to remember them all with a sore head.
I thought I knew exactly what my head was doing, until I kept a year worth of these diaries. When I looked back, I was surprised at the pattern.
I kept about 7 years worth before zi got sick of filling in forms.
But I had a correct diagnosis by then and treatment, so they didn't need them anymore.

(If they asked me how many CH attacks I had, I always estimated far fewer than I had actually experienced. So I recorded them in the diary.
When I looked back in the diary, I saw to my amazement, that I had over 10 months per year, at minimum 3 attacks per day, up to 6. I nearly fell off my chair.
I never realised I had so many, but the diary cleared that up for me and the Doctors)

I used to tell Headache specialists about what went on as a kid for me too.
They explained, that only recent info was relevant.
They don't need (or want) to know about history long ago - strange, I know, but they limit their focus to the last few months and take it from there.
As the diary introduction says, fill it in for 1 month and present to a specialist.

If you have a different headache type, like Trigeminal Neuralgia, or Paroxysmal Hemicrainia or even 2 headache types, adding Migraine or a headache caused by neck problems into the equation - a diary should show this up pretty soon.

Then they can start to prescribe different drugs and try different approaches.

You and the Doctors can take it from there.
Your headache is very real.
I hope those around you can see this.
Validation of your pain is important for you, the Docs and your loved ones.
I hope a diary will move things along in your favour and raise some awareness amongst the people around you.
Then they can help so much too, if they know this sort of info.

One more question - Have you used Indocid (Indomethacin) at all?

Cheers, Ben.


Posted in Don't Drive.... on 04 Apr, 2013 - 9:30 pm

Shit Buzz, I hope you're OK.

Sound advice, indeed.

Not having a go mate, but I make sure my Ambulance insurance is up to date, for just such an occasion. Let them do the driving.
From experience, racing to Emergency for CH is a shitty plan anyway, I don't go there.
They never treat the things and that's if CH has not already peaked by the time they get to you. Preventive and abortive medication approaches help keep me off the road, or at least medicated well enough to drive.
(By aborting attacks with Imigran injection, wait 15 minutes until I feel OK, then drive)

I have always wondered seriously, what would happen to me if CH was bought up in a driver impairment issue with Rego dept, or the coppers, in a crash.

How did the coppers handle that one Buzz?
Did you tell them you had CH?

The implications of this are big for all of us.
Please let us know how it goes, or what the legal fallout was.

Hope you're OK mate. Jees, scary...

Cheers, Ben.


Posted in is this even working on 04 Apr, 2013 - 8:08 pm

Hmmm, the site likes dropping messages lately.
It gives me 403 forbidden errors all the time.
I go back through my saved pre-written posts on notepad, removing links, brackets, slash marks - anything that may be mistaken as Malicious code, but it still doesn't work.
I often rewrite posts from scratch because of this. Same for PMs. People keep telling me they are having trouble sending PMs, they get lost between point A and B.
I can't even PM an example to Roger, because it contains the same errors that cause the problem in the first place, its becoming a big problem.
I write posts in notepad, but when I cut & paste here, some form of page formatting is copied too, (tried - Raw txt, ANSI, Unicode, Unicode big endian, UTF-8)
but it makes
no difference, causing the post
to
break up into lines like this.
Pretty sure Hoppy has experienced this too
as
his posts tend to look like this. (notepad, I guess...)

A temporary fix...
I put the cursor on screen, then do CTRL + A (select all) then CTRL + C (copy) before I post. This keeps your post on the "clipboard" of your PC.
If the site drops out, or throws an error, you can then CTRL + V (paste) the post back in.
Or go to Notepad, or Word and CTRL + V (paste) it there, save it and work on it later.
At least there is a way of saving what you wrote and protecting against losing what you type. On top of CH, this sometimes makes me want to launch my PC through the nearest window when I lose a big post, with many links and research in it.

I will have a talk to Roger about it.
I know he's really busy and I don't want to bother him.

Anyway, computer issues aside.
I will try to help Sonja, if I can.

I have a few questions after reading your post, I am just trying to get an idea what is going on.

You mention both sides of your head in your post.
I'm a bit confused, not sure I'm reading it right...

When "the big one hits", which side is it on?

Pain seems constant, as you say, lasting for weeks.
If you would call the pain from the big one an "attack"; without taking pills, how long does it last before it stops hurting?

If you still have the info, what drugs did they give you when you were diagnosed with CH?

Important here. I'm not picking holes in your pain or diagnosis.
I don't doubt for a minute that it is bad, sounds horrific to me.
Just trying to work out, frequency, severity and duration of your head pain.

I am sure someone will chime in with some ideas, but working out what is going on first would be a good start, I think. It's a Doctor's job really, but it seems they have failed for you. With a bit more info, perhaps i could dial in on what is going on and offer some ideas to check with your Doctors. We'll see... icon

Hang in there, we will all help, as best we can.

Cheers, Ben.

Now, CTRL + A, CTRL + C, then hit post reply and hope for the best...fingers crossed!


Posted in Greetings From Colorado USA on 04 Apr, 2013 - 11:53 am

Yeah, the US health system is different indeed.
We generally don't have to fight insurance issues here. That's why I posted links to the guys who know how to do this, in the US.

There are some studies and questions about how Verapamil is used in CH here, "must read" info for Verapamil users:
http://www.clusterheadaches.com.au/forum_posts.php?id=2973&start=0[
/L]

Better wise up on verapamil real quick mate, or you could be like me in the thread there.
Don't take my word (or that of your neuro), check the studies and have the EKGs.

Hydorcodone - Yes, oxycontin.
Will not touch CH. No clinical efficacy in CH whatsoever.
Checked with my specialist, who is well qualified in this area, Opiates like Oxycontin have no place in CH treatment. yes, Zombie WITH a headache.
This hillbilly heroin should not be prescribed in CH.
(The clinical evidence is there to back my claims here)
Bad news with addiction and dependence, withdrawal too.
Real bad stuff - Oxycontin.

"Yeah I used to get migraine" they say.
They have no idea.
The term "Headache" does not convey the severity of CH.
We need to call it "Axe in the eye-socket syndrome" or something more descriptive...
Sometimes, people use this letter to explain to employers and others what is going on:
http://www.ouch-us.org/downloads/ch_syndrome.pdf
It seems like a good idea at first.
Most people say it actually has a negative effect on their bosses.
Raising CH awareness sometimes backfires on the ignorant.
Everyone has a head.
Everyone's had a headache.
Everyone's a friggin expert, based on their experiences with "Migraine" or "Hangovers" - just ask them, they will tell you all about it.
I sometimes do this, for my own amusement in waiting rooms.
People tell me how tough Sunday was after a drinking session and "Hangover Migraine". I nod. I don't tell them about CH anymore.

Hang in there mate.
Get that Verapamil into you, supervised of course.
Make sure the Neuros do EKGs, they should have done a baseline one before prescribing Verapamil.
How they know which drug will work is beyond me - it's a cocktail, one well proven in CH, the other a shot-in-the-dark, at best.
Fill in a headache diary, this will help.
Get over to the US site, they know your situation far better than we do here.

Good luck with it all.
Drop in anytime.

Cheers, Ben.


Posted in Greetings From Colorado USA on 04 Apr, 2013 - 9:59 am

Hi Denver,

Sorry you had to find the site.
I think the SEO (Search Engine Optimisation) from Roger's (admin) IT brilliance shows here. You found us before the US site.
There a lot of people over on the US site who can offer perhaps more timely and localised advice on seeking specialists, medications, insurance issues and all things CH in the US.
Things are very different in the US to here, as far as treatment approaches and the day to day logistical challenges there for a CHer. So advice on that side of things will be somewhat limited by geography, I would think.

Having said that, our heads are all feeling the same, no matter where we are...

To answer your questions, I will do my best.
Many can still work, when CH is correctly managed.
I can't, but generally I am the exception to the rule.
Try not to let CH take too much ground from you, hang in there if you can. It might mean a change in jobs, or the amount of work you can do, but I think a closer look is needed by the specialists before you get to these sort of life changing decisions.

Verapamil is probably a good start. make sure they give you regular ECG's (or EKGs over there) for Verapamil use in CH.

Indomethacin does not generally work in CH.
I suspect the Neuros are playing with you here, or have no idea how to treat you. I had 2 trials of it, one Neuro confessing after 3 months of my using it (to no benefit) that he was testing me to see if I had a response, to rule out CH, and to check if I was lying about my condition. I could have thumped him for that and the reflux/heartburn it caused... 3 months of unnecessary suffering, oh well.
Indomethacin (indocid) is used as a diagnostic tool to rule out CH.
If you have Indocid response, you probably don't have CH.
It is routinely prescribed in non-CH headache conditions, like Paroxysmal Hemicrania. It could work for you perhaps. In a condition of no known cause, one has to maintain an open mind.
Indocid will burn a hole in your gut though, guaranteed.

Hydrocodine? I think there is a brand name here, or a US variant, or possibly a typo.
I can't find this one.

I assume Codeine is a component here.
Codeine too, will not touch CH.
It can give you the added bonus of MOH Medication overuse headache, or rebound attack. General concensus around Codeine in CH, is that it does not work at all to abort an attack, but can further aggravate the problems. Also leading to addiction potential and withdrawal syndromes. Codeine is a trojan horse delivery method for your body to make Morphine, which is also ineffective in CH treatment. The pain is still there, morphine will just increase your indifference toward the pain. It can cause a heightened sensitivity in your pain profile, resulting in more pain when it is eventually withdrawn. I would steer clear of Codeine in CH.

All this leads me to believe your Specialist is taking another "shot in the dark" diagnosis and has not invested the time to properly research CH, or offer you correct treatments.

(I'm getting hit. Back later...sorry.
will finish with some treatment ideas and vital info
Back again, 1 hour downtime from CH start to finish, using Imigran FDT, not bad, I suppose...)

You may want to fill in a headache diary.
http://www.headaches.org/pdf/Headache_Diary.pdf
Armed with one of these filled in, Neuros may dial in on your condition and better treat it.

You may want to ask them about a Prednisolone (Cortisone) taper, to give you some immediate relief. Also ask about abortive medications like Imigran, for use on a per-attack basis. Perhaps even trial Oxygen therapy as an abortive, 100% pure O2, minimum 15l/min, through a non-rebreather mask - works for some.

That's about all I can offer at this point, Denver.

The US site has some great guys there to help.
Batch with his vitamin regimen, Guiseppi, Bob Johnson and Mike NZ are all excellent researchers and contributors there. Bob and Batch can help with US located resources, medications and specialists.

US forum link: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl

You may not yet be able to see the forum, you may have to join up.
The forum link above is a sister site to the link below.
Alternative entry point: http://www.clusterheadaches.com/

You're still welcome here anytime.

Hang in there, support is on the way.

Cheers, Ben.


Posted in Suffering alone in a Western Australian mining camp on 04 Apr, 2013 - 9:34 am

Thanks Kim,

I feel embarrassed to have posted that now.
I was weak.
Everyone has days like those and complex lives to lead, with or without CH.
Mine is no different.

I didn't realise that I keep a very cool head out there in the Hospitals, GPs, pharmacies and radiologists, I am a veteran Patient, with patience skill unmatched out there in the wards and waiting rooms. I never lose it at anyone out there, I actually have many blood nurses, radiologists, pain unit nurses, admin staff, and the Prof congratulating on my demeanour, despite what I live trough.
Then I suppose, I let fly here, but only at persistent dickheads who don't research, lob in here, post crap AND punch holes in my diagnosis. That one is the hardest to take - I know MY own CH , it's diagnosis, and so do the best specialists.
I didn't think I was letting fly AT people in particular (except Les, who had many, many opportunities to establish basis in fact and did not).
Apologies again to those who felt I did.

The CH is bad enough.
I get narky for the newbies, not at them.
They don't have 30,000 CH attacks under their belt, or the practice in experiencing them.
I have had 34 years of this to develop coping mechanisms.
People like Bren who have just been hit, outta nowhere, have NO CH coping mechanisms built in yet. So I try to help as best I can.
I was never well enough to have had a long-term job, car, house, mortgage, kids and a wife to lose. So I have no idea what it is like to be a "normal" person, hit mid-life with CH.
It is unimaginable to me what it must be like for them, having so much to lose.

I worry about the crap the newbies read and the delays they experience until correct diagnosis. Bren went 9? days from presentation to diagnosis, a record, thanks to an educated GP. Fantastic, but we need to see more of this from Doctors.
I don't want to hear that anyone is swinging from a rope, because they lacked the facts and hence, a diagnosis and some treatment.
I don't want to hear, that in 2013, anyone should have suffered well over 20 years of misdiagnosis. It is not acceptable.
This is time you don't get back.
The system needs to learn from mistakes they made on people like me and get into prompt diagnosis, otherwise cases like mine are all for nothing.

That's why I'm here.
If I can't turn a lifetime of unimaginable pain to someone's advantage, if not my own - than it has all been for nothing.

I'm off to chase Imigran, with renewed vigour.
Thanks to all who sent me PMs.
Your encouragement means a lot to me.

Back into it.

Cheers, Ben.


Posted in Suffering alone in a Western Australian mining camp on 03 Apr, 2013 - 11:00 pm

I haven't seen this thread in a year.
I remember now, "the team" had it under control and I could offer no better advice, so I didn't. I miss 'the team" today.
Heather's warm greetings and solid knowledge.
Barry's considered tone and cool, experienced head.
Peter's succinct and often lateral view on things.
Gee I miss 'em today.
Sara, you should be a mod too - you're better at it than me.

Apologies to Andrew for the thread degrading into rabble here.
Rather than be negative all the time, I prefer to focus on the positives and thankyous I get in PMs. I have received many, you know who you are...and I appreciate them so much. Those are reason enough to keep doing what I do.

I see people have had jack of me being narky. Fair enough, I have made apologies elsewhere on the site for it, but no excuses.
I can make no excuses, but for once I will let you in on what a few days are like in my life.
I don't want sympathy and I don't usually do this...

I am having attacks 4 hourly now, with no preventive options whatsoever.
None, nada, nix, nil, nuete... we have scraped the barrel and it is empty.
The Prof has nothing else to offer. Decapitation maybe...
Imigran is it, all I have left.
Whilst still helping people via PM, email and in the US too, this is the sort of shit I go through. This is how I come back with the rub on drugs like Imigran, from personal experience like this. It's time to let you in on it.

I wrote this today, with no idea where it would end up.
My specialist's inbox, lost in a folder in my PC, or in the recycle bin.
I had no intention of posting it, as it sounds like a huge whinge to me.
I just wrote it.
Sorry if it does not make much sense - it was for my records only, treat it like a journal entry. (The shingles was bought on about 18 months ago by Pred, for use in CH.)

Throughout this, i thanked all pharmacists, as it is not their fault.
I am courteous in person, I was raised with manners.
Today, I had to use 'em...

The Imigran Debacle.

RAH – Royal Adelaide Hospital
PMU – Pain management Unit
USS – Ultrasound scan
ETA - Estimated Time of Arrival

March 27 – Contacted Specialist via email for Imigran Injection prescription through RAH. To be collected March 28, in AM. Confirmed via email.

March 28 - Specialist advised via email, unable to prescribe Imigran Injections in AM due to lecturing commitments. Patient (me) unable to attend in PM, due to attacks and no transport. Pharmacy stock levels of injection not verified. (Yet to find out they have none in stock)
Using expired (NOV 2012) injections over Easter and Imigran FDT stockpiled DEC 2012. Unable to attend Royal Adelaide Hospital Pharmacy to collect until April 2, due to closing for Easter holiday.

– In the absence of Injections, lodged existing Regulation 24 prescription for Imigran FDT 50mg at Amcal (visit 1). Was provided 2 X boxes of 4 tablets (8) and 4 X boxes of 2 tablets (8), with 8 tablets to come, waiting on order.

Easter Holiday (Hell) – March 29,30,31, April 1. Over 20 CH attacks experienced.
Severe shingles pain flare-up. Some CH attack reaching 10, some unmedicated - try to save Imigran for the worst.

April 2 - Drove borrowed car from home into city - Royal Adelaide, between CH attacks, paid for petrol & parking, staggered 2kms with bad knees to Pain Management Unit to collect script. Collected Imigran Injection script at 9AM from Pain Management Unit, took it to RAH L5 Pharmacy, lodged it. Waited 30 mins and then was informed that none were in stock, would place injections on back-order.
Advised that stock would be arriving April 3. (Cost to get into RAH, $20 to pensioner, for ZERO medication outcome). Used expired injection in RAH carpark, drove to Doc.

11.15 AM, Attended a local Medical centre, seeing an unknown GP, for Shingles pain. Aciclovir prescribed. Advised inflammatory markers worse. Tumor markers clear.

Drove to Amcal (visit 2), where without consulting databases, Pharmacist advised there was a “manufacturing issue” which I believe to be bullshit. Still waiting on 2 X boxes of 4 tablets, due 3rd April.

Telephoned my main regular GP for a new 2nd Reg 24 script of 24 Imigran FDT tablets, to be collected the next day.

April 3 – Collected new Imigran script from GP at 9AM.
Attended Amcal again (visit 3), where they advised 8 Imigran FDT tablets were on back-order. Citing “Supply issue” – not consulting database, or seeking alternate information - again bullshit. Could not supply new script, for these reasons.
I know it's bullshit, because I installed and networked most of their internal stock & inventory computer system back in 1999, trained the F***N staff how to use it....

3.30pm Was telephoned by RAH L5 pharmacy, advised that 2 X refills (4 Imigran injections) had been located at L2 Pharmacy in the RAH. Could not attend due to CH attacks, transport availability and conflicting Radiology appt for USS on lipomas in arms. (I still have 4-6 expired injections and thought it best to wait until all have arrived at L5 RAH Pharmacy, given attacks and cost of visits). RAH L5 Pharmacy cannot advise ETA for injection back-order.

Attended ANOTHER Pharmacy and lodged new 2nd reg 24 script for 6 X boxes of 4 (24) Imigran FDT. They checked with supplier and said they could supply the script of all 6 boxes X 4 tablets and placed order with supplier for 4pm.

4pm – attended a Salisbury Pharmacy and was supplied with 2 X boxes of 2 tablets and handed 5 repeats. GP had failed to write “Reg 24” on the script, or it had been torn off the script by pharmacist.. Produced letter from my specialist “Dear Pharmacist” at which point the pharmacist offered to dispense all repeats, 4th April. She advised that Imigran FDT was only PBS approved for prescription in boxes of 2. (more bullshit) She advised a back-order of 10 X boxes of 2, to be collected 4th April.

As at 5pm April 3rd, waiting on;
Amcal, for 8 FDT tablets
A Salisbury Pharmacy, for 10 X boxes of 2 tablets.
RAH Pharmacy for 18 X Injections, on “back-order” with no foreseeable availability. None in stock.

Currently experiencing 5-6 attacks per 24hrs, severity 10.

No known preventive, Imigran FDT becoming ineffective, using expired injection, no new injection available. Running out of Imigran supply.

Any idea what is going on with Imigran supply?
I am about to lose the plot, completely.

Ben.


Posted in These therapies stopped C H Dead on 03 Apr, 2013 - 11:29 am

Well the people of the site have spoken... Mojo too, has his 2 cents worth on the subject...

This little ditty goes out to you Jammy Dodger:

http://www.youtube.com/watch?v=T-TB-qTaXSM

Enjoy!icon

Cheers, Ben.


Posted in on 01 Apr, 2013 - 1:14 pm

Of purely historical significance Hoppy.
Wouldn't suggest trying it these days.
It shows how long man has been seeking relief from the dreaded head pain syndromes.

Pain free days to all.

Cheers, Ben.


Posted in Tens on 01 Apr, 2013 - 10:49 am

Kba78,

Best give Matt a PM questions on this.
He has more experience than I with TENS (from memory)
Not 100% sure, but I think he used to use one, but I'm not sure how, where, when etc.
http://www.clusterheadaches.com.au/member-profile.php?id=579

From my own research, TENS devices that are for sale in retail are not regulated for safety and are aimed at muscle stimulation. It's complex engineering stuff, but to keep it simple; perhaps commercially available TENS units are inappropriate for home use on the head.

They are designed to be used on muscles and the FDA has a ban on devices that use the application of Transcerebral current (voltage applied to the head). The units may have proved "safe" for use on muscles, but I think you will find most literature contained within manufacturer's packaging of TENS units provides warnings not to use their TENS units above the neck.

Here's an IASP document on TENS efficacy in primary headache:
http://www.iasp-pain.org/AM/Template.cfm?Section=Fact_Sheets4&Templ
ate=/CM/ContentDisplay.cfm&ContentID=14465


extract:

Transcutaneous Electrical Nerve Stimulation (TENS)
• Effects are conveyed by electrical stimulation of the skin within a painful area with varying intensity and frequency. Stimulation of nerve fibers sensitive to touch is thought to modulate neurons transmitting nociceptive stimuli at the level of the spinal cord.

• Despite some positive small studies, meta-analyses have failed to provide convincing evidence that TENS is effective in primary headaches.

"at the level of the spinal cord" - I think they too mean, not on your head directly.

A quick check of CH patient accounts around the world does not look good for TENS either. Some say it triggered attacks and they also say that when used on your neck, results are unpredictable, at best, if not unpleasant. I researched this extensively as an ONS candidate and experienced electronics tech, also asking a headache specialist and an ONS surgeon what they thought of TENS. I would not put it on my head.

Before I get jumped on for calling you "wrong" here, which I ain't...
I am providing this information for your safety and consideration.
Up to you what you do with it.
Always check with your GP or specialist.

I hope you find relief somehow Kba.
There are a stack of other preventive drugs in CH, if you want to talk about those, maybe I can help.

Hang in there.

Cheers, Ben.


Posted in on 01 Apr, 2013 - 4:28 am

Hi Hoppy,

I was scouring the literature, found this and immediately I thought of you.
Thought it may be of interest to you mate.
Perhaps I should have put it in "Medications and treatments".
Good research starting point...

http://www.jstor.org/stable/pdfplus/6366.pdf

Enjoy! icon

Cheers, Ben.


Posted in Chocolate a trigger in CH attack? on 31 Mar, 2013 - 1:29 pm

Subjects from the population experience trigger factors less often than clinic patients. The difference between theoretical knowledge and personal experience is largest for oral contraceptives, chocolate and cheese.

http://link.springer.com/article/10.1007/s10194-006-0305-3#page-1[/
L]


http://link.springer.com/static-content/0.6342/lookinside/74/art%25
3A10.1007%252Fs10194-006-0305-3/000.png


http://link.springer.com/static-content/0.6342/lookinside/74/art%25
3A10.1007%252Fs10194-006-0305-3/001.png


Apologies for the 3 part epic, the site broke it up into pieces for me.

Enjoy the Easter Eggs, I say!

Cheers, Ben.


Posted in Chocolate a trigger in CH attack? on 31 Mar, 2013 - 1:28 pm

None of 40 patients with tension headache (diagnosed by International Headache Society criteria) reported sensitivity to foods, and only one was sensitive to alcoholic drinks. The prevalence of sensitivity among 46 patients with some migrainous features was intermediate between the migraine and tension headache categories. It is concluded that cheese/chocolate and red wine sensitivity, in particular, have closely related mechanisms, in some way related more to migraine than to more chronic tension-type headache, while quite separate mechanisms play a major role in sensitivity to alcoholic drinks in general.

http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.1995.hed3506
355.x/abstract

------------------------------------------------------------

Pediatric Neurology Journal.

The diet factor in pediatric and adolescent migraine.

Diet can play an important role in the precipitation of headaches in children and adolescents with migraine. The diet factor in pediatric migraine is frequently neglected in favor of preventive drug therapy. The list of foods, beverages, and additives that trigger migraine includes cheese, chocolate, citrus fruits, hot dogs, monosodium glutamate, aspartame, fatty foods, ice cream, caffeine withdrawal, and alcoholic drinks, especially red wine and beer.

http://www.sciencedirect.com/science/article/pii/S0887899402004666[
/L]


-------------------------------------------------------------

The Lancet

A population study of food intolerance

There is a discrepancy between perception of food intolerance and the results of the double-blind placebo-controlled food challenges. The consequences of mistaken perception of food intolerance may be considerable in financial, nutritional, and health terms.

http://www.sciencedirect.com/science/article/pii/S0140673694902348[
/L]


------------------------------------------------------------------------------

“Neurology” Journal

Migraine Triggers May Not Be So Potent After All

TIME article, based on NEUROLOGY Journal study outcome.

Bright lights and too much exercise are well-known migraine launchers, but the latest study hints that sufferers may not be as sensitive to these triggers as previously thought. Researchers report in the journal Neurology that commonly suspected migraine triggers might not be responsible for a hurting head after all.

Unlike previous studies of migraine triggers, in which sufferers were asked about what conditions or situations preceded a headache, the scientists exposed 27 migraine patients in a lab to flashing lights, intense exercise or a combination of both to provoke a migraine with aura, a type of headache accompanied by often debilitating visual disturbances. Only a handful of subjects experienced any sort of migraine, and those who did had exercised, suggesting that bright lights may not be to blame. The participants ran or used an exercise bike at maximum effort for an hour, while researchers used a combination of lamps, flashes and other visual stimuli to mimic light disturbances for up to 40 minutes in order to study the combined effect of light and exercise. After these sessions, only 11% of the participants — three patients — experienced migraines with auras, and an additional 11% experienced migraines without auras.

“What have generally been reported as sure triggers for migraines are not so sure when you actually expose people to them” says Dr. Jes Olesen, the study’s corresponding author from the University of Copenhagen in Denmark and a fellow of the American Academy of Neurology.

(MORE: Can Brain Freeze Solve the Mystery of Migraines?)

Dr. Stephen D. Silberstein, a professor of neurology at Thomas Jefferson University and the director of the Jefferson Headache Center who co-wrote an accompanying editorial for the study, suggests that some of what people think are triggers may actually be symptoms of migraines instead.

“You eat chocolate and you get a headache. Does that mean chocolate triggers the headache?” Silberstein asks.

“What probably happens is the first symptom of your migraine attack is the desire to eat chocolate. Just like when you’re pregnant, you might want pickles or ice cream. That’s one end of the spectrum, where the desire to do something is part of the migraine attack, not the trigger.”

Distinguishing between triggers and symptoms is challenging, not just for those who study migraines but for patients as well. Silberstein says there are some known triggers, such as certain odors, hunger, chemicals in alcohol and hormonal changes linked to menstruation, but that other factors may fall somewhere between an actual trigger and a symptom. How can patients tell? “Everybody with a migraine should try to find out what is triggering their attacks,” Olesen says. “When they have a suspicion, it would be a good idea to try and see if it induces an attack. In most cases, it’s probably not going to be true.”

Both Olesen and Silberstein say there are a number of factors that determine whether these suspected triggers will actually lead to an attack. Patients likely have individual thresholds that vary from day to day and from environment to environment: some days your brain is less vulnerable to certain triggers, while on other days the conditions might be right for a migraine.

http://healthland.time.com/2013/01/24/migraine-triggers-may-not-be-
so-potent-after-all/


------------------------------------------------------------------------------------------

Journal of Headache Pain. 2006.

Trigger factors of Migraine and Tension-type headache: experience and knowledge of the patients.

Abstract:
The objective was to examine potential trigger factors of migraine and tension-type headache (TTH) in clinic patients and in subjects from the population and to compare the patients’ personal experience with their theoretical knowledge. A cross-sectional study was carried out in a headache centre. There were 120 subjects comprising 66 patients with migraine and 22 with TTH from a headache outpatient clinic and 32 persons with headache (migraine or TTH) from the population. A semistructured interview covering biographic data, lifestyle, medical history, headache characteristics and 25 potential trigger factors differentiating between the patients’ personal experience and their theoretical knowledge was used. The most common trigger factors experienced by the patients were weather (82.5%), stress (66.7%), menstruation (51.4%) and relaxation after stress (50%). The vast majority of triggers occurred occasionally and not consistently. The patients experienced 8.9±4.3 trigger factors (range 0–20) and they knew 13.2±6.0 (range 1–27). The number of experienced triggers was smallest in the population group (p=0.002), whereas the number of triggers known did not differ in the three study groups. Comparing theoretical knowledge with personal experience showed the largest differences for oral contraceptives and cheese. (Please see link below, truncated post - continued)


Posted in Chocolate a trigger in CH attack? on 31 Mar, 2013 - 1:22 pm

Enjoy your Easter Eggs - Chocolate as a CH trigger?

I conducted a systematic review of online resources and available published medical journals to see if I could find out one thing: Does ingestion of chocolate precipitate cluster attack in diagnosed CH patients?

In doing so, I attempted to remove bias by excluding user-input information from forums, news sites, personal blogs, individuals and commercial websites, and those last bastions of Medical integrity – Yahoo and Wiki answers.
I excluded as much of the above sources as possible as a filter mechanism, because the internet is littered with untested and anecdotal references to Chocolate and Headache.

Information that was not located in or associated with a published reputable medical journal was excluded from my search results. I used deep searches, combinations of keywords, searched within domains, searched within Author’s work, their citations and used selective file types and a few extra search methods. Google cache is useful here; where a document has ever appeared online I was able to access available stored copies of it.

There were a few limitations imposed on my search criteria; mainly the requirement for journal subscription and the required fee of around $30 per article to access a lot of journals or library articles, which is prohibitively expensive for this patient-based research exercise.

I noticed a few very important factors for consideration when researching this topic:

- Careful consideration of the literature and the need for a clear distinction between Cluster Headache, Migraine and all other known Headache conditions. Their individual diagnostic criteria and established known mechanisms needs to be applied when reading all the info below.

- Diagnosis of headache conditions has historically been achieved by practitioners taking detailed oral patient history, in which many patients report their own perception of known triggers; including, but not limited to chocolate.

- The long and widely held belief and often repeated notion that Chocolate is a known Headache trigger.

- Statistical recording/reporting by practitioners of patients accounts; themselves alleging Chocolate as a headache trigger.

- The need to seek trial based evidence for or against the notion of involvement of Chocolate as a Headache trigger in Cluster Headache, specifically.

- The age and hence, the currency of data taken from studies.

I note emerging trends in the data.
Here is what I found.

Most reports of Chocolate as a Headache trigger make reference to the components of chocolate reported as potential triggers. The most often found alleged culprits in my search results were: Phenethylamine, Tyramine and Tyrosine.
I am not a chemist. The mechanisms behind how these candidates work is outside of my area of understanding or expertise, but you can read more about them online.

Be your own judge, reach your own conclusion.

Cheers, Ben.

(I am not suggesting Wiki is a provider of conclusive fact, but a good start point for research and links.)

http://en.wikipedia.org/wiki/Phenethylamine
http://en.wikipedia.org/wiki/Tyramine
http://en.wikipedia.org/wiki/Tyrosine

Studies, abstracts, extracts and quotes lifted from them:

--------------------------------------------------------------------------------

Journal of Neurology, Neurosurgery, and Psychiatry, 1974, 37, 445448

Effect of chocolate in migraine: a double-blind study

A. M. MOFFETT, M. SWASH, AND D. F. SCOTT
From the Section of Neurological Sciences, The London Hospital, London

SYNOPSIS: The effect of chocolate on a group of volunteer migrainous subjects, who had observed that headache regularly occurred after the ingestion of small amounts of cocoa products, was investigated. Two separate studies were carried out in a double-blind placebo controlled manner. Only 13 headaches occurred to chocolate alone in 80 subject sessions, and only two subjects responded consistently to chocolate in the two studies. This suggests that chocolate on its own is rarely a precipitant of migraine. Other possible implications of the results are also discussed.

http://www.ncbi.nlm.nih.gov/pubmed/4838915

http://jnnp.bmj.com/content/37/4/445.full.pdf+html

-----------------------------------------------------------------------

NT Mathew - Neurology, 1992 - medlink.com

During a cluster period, trigger factors that precipitate headache include alcohol ingestion and nitric oxide ... These should be avoided to prevent cluster headache attacks. Migraine triggers, such as chocolate and cheeses, have no known triggering influence on cluster headache.

(Cached by Google, linked below, full study available for purchase)

http://www.medlink.com/medlinkcontent.asp

-----------------------------------------------------------------------

Cluster Headache - Orphanet Journal of Rare Diseases 2008,

Both CH and migraine can be triggered by alcohol, and relieved by triptans, but CH necessitates parenteral routes of administration. Stress, foods (like chocolate) and menstrual cycle, are not typical triggers for CH.

http://www.ojrd.com/content/3/1/20

------------------------------------------------------------------------

Headache and chronic facial pain.

Oxford Journals - Continuing Education in Anaesthesia, Critical Care & Pain.

Migraine attacks are triggered by stress, menses, pregnancy, dietary habit (e.g. red wine, cheese, chocolate, and nuts), odours, light, and poor sleep.

http://ceaccp.oxfordjournals.org/content/8/4/138.full.pdf+html

-----------------------------------------------------------------------

Headache: The Journal of Head and Face Pain

Relationships Between Food, Wine, and Beer-Precipitated Migrainous Headaches

Four hundred twenty-nine patients had migraine, of which 16.5% reported that headaches could be precipitated by cheese or chocolate, and nearly always by both. Of the migraine patients, 18.4% reported sensitivity to all alcoholic drinks, while another 11.8% were sensitive to red wine but not to white wine; 28% of the migrainous patients reported that beer would precipitate headaches. There was a definite statistical association between sensitivity to cheese/chocolate and to red wine (truncated post, sorry - continued))


Posted in New here. on 29 Mar, 2013 - 6:56 pm

Matty,

I forgot to mention FDT is Fast Dispersion Tablet version of Imigran.
Imigran is one of the brand names for the active ingredient, Sumatriptan.
You may have had basic or generic Sumatriptan tablets, which allegedly have slower onset than Fast Dispersion versions.

Sumatriptan comes in 50mg and 100mg tablets, a nasal spray, or injection.
All the datasheets for all types of Imigran and modes of delivery are listed here: http://www.clusterheadaches.com.au/forum_posts.php?id=2972&start=0[
/L]


If you respond at all to relpax, you have shown a positive Triptan response.
The trick with Triptans is to get them into you as quick as possible and find the right one for the job. Patients like to juggle Triptans until they find which ones work the best for them. I don't think you will find a better working drug in CH than Imigran, or a faster mode of delivery than Injections.

There is a list of some others here: http://en.wikipedia.org/wiki/Triptans

immigrant eh? I gotta love preemptive text and spellcheckers. Ha!

Still, correct diagnosis is required, I see you are onto that.

As for the Head scans.
I used to be a very strong advocate of scanning all new Headache presentations.
Jumped up and down about it for years, asking everyone "Have you had a precautionary scan to rule out the nasties?". Turns out that this approach is now becoming outdated.
I was ignorant on scans in headache and asked this out of my own frustrations with lack of treatment and ER staff ineptitude.

Of all the people that come here, I have seen 2 with bad scan results - one with a brain tumor, which is a NEW presentation of pain, one with MS, which was also a NEW or MORE SEVERE head pain, they both met the "Red flag" criteria (below) and got their head scans done, so their non-CH related head problems still didn't slip through the net. Docs are getting better at this stuff these days.
Don't be alarmed if no scans are done.

RED FLAGS:
What follows is NOT an exhaustive list of red flags for headache but gives you an idea of what to look for:


- A headache you've never had before or a headache you have had before but it changes in some way – e.g. greater severity, how often you're getting it and where you're experiencing it
- Headaches which start for the first time in your life after the age of 40
- A headache that hits you out of blue (this is one needs urgent assessment, especially if it's at the back or front of the head)
- A headache that's associated with weakness in an arm or leg, slurred speech or difficulty speaking and/or when you try to smile, you can't properly. (This is a stroke till proved otherwise and you should call an ambulance)
- A headache with fever especially if it's made worse by light and associated with stiffness in your neck – again needs urgent attention
- Headaches that are getting progressively worse, waking you up at night or worse in the morning
- Headaches when you have a history of cancer
- Headaches associated with weight loss
- Headaches after you've hit your head
- Headaches with any change in consciousness or associated with a seizure or blurred vision (another one for urgent attention in an emergency department)

Source: http://www.tonictv.com.au/index.php/about/tonics-blog/183-red-flags


99.9% of CH patients have no nasties on scan results.
I got my statistics from my specialist, the video is on here - "Breaking the Pain Chain" with highly skilled headache specialist, Professor Paul Rolan, where he quotes this stat. Some people should watch it...

I have had a shedload of Radiology done this year and the diagnosticians tell me that recent studies show a higher risk from radiation in scans than first thought.
So they are steering away from "routine" scans these days, for your safety.
Note, I said 99.9% of CH PATIENTS, this means correctly diagnosed ones.
Specialists may still want a look at your brain anyway. Go figure...

That is why the diary is important, so specialists can spot reports of any new, more severe, or shifted pain like those on the list above.

Good luck with it, keep us posted Matty.

Cheers, Ben.


Posted in New here. on 29 Mar, 2013 - 10:41 am

Matty,

Thanks!

I was writing my post while yours about ER visits came up, didn't see it until after.
Arm yourself with filled in diaries. ER staff can look at them too.
They will see by frequency, severity and duration, if it is Migraine, CH or another headache type. Don't get angry with ER staff (I have...) they are trained to deal in acute life-threatening trauma - not headache. They seem like a bunch of incompassionate idiots, I know, but they are actually doing their job properly by prioritising Headache down to the bottom, behind their usual emergency presentations in ER.

That's why we have specialists mate! smile

Chewing Relpax to get it in faster - I can relate to that!
Imigran is the go over Relpax for fast onset any day, better ask your GP for some.

Everything else is in the post I wrote.

Dev is on the money too, be pro-active, cause it will come back.
Be prepared -Scout's motto...

Hope it helps.

Cheers, Ben.


Posted in New here. on 29 Mar, 2013 - 10:09 am

Hi Matty,

Welcome to the site, sorry you had to find it.

Please, seek a Specialist diagnosis.
Usually, a Neurologist will be able to do this for you.
I cannot urge you in strong enough terms, you need to see a Specialist, not a GP, for important differential diagnosis (that is to work out exactly what type of headache you have, in order to correctly treat it)

Your GP can refer you to a Neurology department at your local hospital.

It would be wise to keep a headache diary, whilst on the wait list to see a Neurologist.
http://www.headaches.org/pdf/Headache_Diary.pdf
Fill these in for a while and your headache pattern will emerge, recorded on paper.
When you do get in front of a Neuro, you will be armed with your own info.
Info is power in the health system, it gets prompt diagnosis and treatment and stops Neuros from trying to shoot holes in your story.
This is important as the only way to diagnose CH (and most headache types) is by having a specialist take a detailed oral patient history, as reported by you.

A Neurologist MAY commission a CT of head, but in 99.9% of CH cases, diagnostic imaging shows no problem. Doctors are moving away from CT or MRI scanning in CH conditions. Don't be too alarmed if you don't get a head scan, although one may be done. CH does not show up on any routine scans we do in Australian health systems.
We can't yet "see" a CH on a routine X-RAY, CT or MRI scan.

If it is CH...
10 week bouts are perhaps long enough to seek a preventive medication.
You may wish to suggest Endep (Amitriptyline) to your Doctor (GP), 20mg doses are routinely prescribed in Headache conditions. Endep 20mg taken before bed, may help with sleep, nerve pain, pain perception, although it won't abort a CH attack. You can do this before you get to a Neuro, it may help.

There are many other preventive drugs, but your case appears episodic, in 10 week bouts. That is a predictable bout and perhaps introducing a preventive drug may be of little use, but I would leave that one up to a Specialist, who manages Headache conditions. Risk vs Benefit analysis should be carried out on an individual basis, your case is no different.

"Drs have given me relpax in the past episodes they work only if I take them at the very first sign of an attack but if I miss the signal they don't help."

Eletriptan (Relpax) can be too slow acting on most CH. Most oral triptans are too slow to act on CH. You can see from the Eletriptan (Relpax) graph, that it is too slow to beat the fast onset of CH attack. Most of us are done and dusted before Eletriptan has time to work. Great for long-lasting Migraine, not so good for CH attack.

The cumulative headache response up to 4 hours following treatment is depicted in Figure 2.

http://s20.postimg.org/d12eacwf1/Eletriptan_response.jpg

If image is too small, CTRL+ to zoom in, or here is a direct link to it: http://s20.postimg.org/d12eacwf1/Eletriptan_response.jpg

Don't want to baffle you with too much info, but here is the Eletriptan (Relpax) efficacy data if you are into reading up on your drugs; (Product Information sheet): http://www.medicines.org.au/files/pfprelxt.pdf

Your Dr has seemingly assessed you as suitable for Triptan use, by prescribing Relpax.
You may want to ask them for Imigran FDT 50mg instead, it has a faster onset, less risk of rebound attack than Relpax and your GP can prescribe it, available at your local Pharmacy. A "Regulation 24" authority script for Imigran FDT, will see you receive 24 tablets in one script. ($36 on concession, $111 for those without).

A Neuro can prescribe injectable Imigran, if required.

I am no Doctor - check it out with your GP and specialist.

Cheers, Ben.


Posted in These therapies stopped C H Dead on 28 Mar, 2013 - 9:25 am

Jammy Dodger,

I have read your therapies again, a few times.
I am still trying to find clinical validation for them in CH studies. It remains elusive.
The burden of proof, if any was required remains with you - the poster of the above information. Spontaneous CH remission is a possibility you cannot rule out, my friend.

A "Moderator" title has not and will not alter my position as a researching and contributing CHer. I have an opinion, to which I am entitled, as is everyone.
The word "moderator" next to my name does not mean that I "know best", I defer to the work of qualified medical researchers and practitioners at the pointy end of current CH research, frequently.

I have posted for years as a CH patient, heavily resisting all offers of moderator's position. I fail to see why I should in some way alter my position or opinion, having been granted a few basic editing facilities. I am not a site representative, just another CH patient. My Hypothalamus fails to make any distinction between "moderator" and patient; I still have over 30 years experience with CH.
Had you researched this site, you will have established this.

I take it from your posts and the now dissociation of Psilocybin from your treatment regime, that it's use in your case would appear to be recreational.

As a life-long CHer, I would not begrudge anyone pain relief, no matter how they achieve it. Whatever works for you.

Pain free days to you mate.

I have others including myself to help and will refrain from further comment here.

Cheers, Ben.


Posted in These therapies stopped C H Dead on 28 Mar, 2013 - 7:41 am

Jammy Dodger,

Nothing compromising about it.
Moderator or not, I am still a contributing member and long-time CHer. 2 weeks ago, I was not a Moderator, but still contributed vast amounts of research to the site, have for years now. No difference, or compromise. The title means jack to my head & my CH anyway.

There are NO treatment guidelines for Psilocybin in CH, that have been endorsed or approved by any University. We await confirmation, availability and prescribing information for the already available Psilocybin used experimentally in labs.
Until a CMI, or datasheet on Psilocybin is made available and safety mechanisms put in place, users take their lives into their own hands. I speak from experience.

This is the current state and a starting point for Psilocybin research:
See Dr David Nutt's work for details.
Also, this research paper: http://www.neurology.org/content/66/12/1920

This dubious little trial even states that it MAY be of benefit, but more work is needed. http://www.erowid.org/plants/mushrooms/mushrooms_article8.pdf
CONCLUSION: LSD and psilocybin may be effective treatment for cluster attacks and cluster periods and may prophylax against future cluster periods with a single dose, a quality shared by no other medication. A randomized placebo-controlled trial is warranted.

This is as close as we have to a research outcome, but still, not of any real use to us in CH. Tell us how to identify and how/where we get legal Psilocybin mushrooms and where to find safety guidelines for use in CH. Not crap from online either.
I have the studies on the current situation, already posted here. Also the applicable Legislation regarding removal of native flora from National parks and Legislation around possession of such substances, are on the site.
Legality and margin for error, both in correct mushroom identification and in "medical" use are a big issue.
One mistake can kill people.
Back your claims with some safety, I would suggest.

CH has no known cause.
Alcohol and Nitrates are perhaps the only known ways to induce an attack. There is a difference between allergic reaction, an induced CH and an un-elicited spontaneous CH attack.
There's a fact.

How diets, sugar elimination, gluten-free and a lot of the stuff you mentioned helps CH remains unproven in CH. Show the site robust, medical journal published clinical trials establishing efficacy of your claims in CH and I, for one, may listen.

If you are going to lift substantial pieces of text and others ideas, please credit the people who do the work, provide some source info, or a link. Batch provides very precise individualised consultation in conjunction with his D3 regimen work. His regimen, lifted altered and posted, without all the supplementary details may be ineffective, or at worst, even dangerous, should users get it wrong.
He also deserves to be credited for his work.

The rest of your post amounts to a "crash" situation for most, at best, if taken on board in its entirety. Lifestyle changes as significant as this should be done incrementally, under supervision. I urge people to seek their Dr's supervision and as always, seek PCP advice.

You posted the stuff - You do the research.
I don't have the time.

In the absence of clinically validated evidence in CH therapies, neither of us can yet argue conclusively or effectively for, or against such treatments. I defer to the recognised outcomes of science-based evidence and will leave the speculation up to others.
The jury is still out on a lot of this, so I await science-based efficacy in CH for most as yet, unproven treatment methods.

Cheers, Ben.


Posted in These therapies stopped C H Dead on 27 Mar, 2013 - 8:56 pm

Day 1) Well known treatment on cluster busters D3 therapy.


Credit to Pete "Batch" Bachelor, for his 50 years of experience with CH, training as a qualified Chemist and monumental efforts in creating the D3 regimen.
80% efficacy in CH prevention so far.
Papers on the regimen are in the works, so clinical validation is not far away.

Individual tweaks may be required, this is different for everyone.
It is not as simple as using the recipe, Batch includes a huge amount of supplemental information, backing himself with diligent research, citing science fact.

Clearly Batch put a lot of work into this and he deserves full credit.
See his official version, or speak directly to Batch here:
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=129196941
6/0

It's a long thread, so you may need to navigate to current discussion on the D3 regimen.
Batch is a true Gentleman, accommodating all questions, just got through a PM with him where he helped immensely. Few CH patients (or specialists) have done more to reduce CH suffering than Batch.

As for the rest of the above post... What the?
I don't have the time to research all the claims there, but suffice to say - I can see holes I could drive a Mack truck through - sideways. There are extensive posts here on most of it. Do your research people.

Disclaimer is at the bottom of every page for a reason...

Cheers, Ben.


Posted in Verapamil hydrochloride on 27 Mar, 2013 - 2:37 pm

Kba78,

I assume you want a patient experience with Verapamil.
Firstly, I am Male, with chronic and intractable CH.
I used Verapamil under GP guidance at first, it was low dose - 180-240mg, ineffective for my CH and no ECG was done.
I reported Bradycardia - a resting heart rate under 60bpm.
This was considered non-serious Bradycardia.

I then used it a second time, under Neurologist supervision, where the dose was elevated from the previous range to only 360mg, before I developed heart arrhythmia.
Neurology dept failed to perform one single ECG on me throughout, despite repeatedly reporting my symptoms directly to them.
I went face down into the carpet after an upward dosage revision from 240, to 360mg.
This is the level of care (or non care) widely reported in CH cases, even under specialist supervision.
I was left with heart block and (if memory serves me) a prolonged P-R interval, eventually found by ECG, commissioned by obtaining a second opinion.

I now take atenolol to prevent arrhythmia, for life.
Attempts to reduce or cease Atenolol have been horrifying and can result in heart attack.
Atenolol prohibits elevated heart rate and thus, any positive benefit from undertaking aerobic type exercise of cardio-vascular benefit, eventually leading to weight gain, inactivity and high cholesterol. I can exercise, but it is of little benefit, as I run out of puff quite easily, when I used to cycle and walk everywhere.
This is a significant reduction in quality of life and leads to all sorts of other medical conditions, weight gain, diabetes, high cholesterol, arthritis etc etc.

Thanks Neurology dept, you bloody legends.

Make them do ECGs (EKGs), or you could end up like me.

Don't take my word for it - the studies are done and located below.

Cheers, Ben.

------------------------------------------------------------------------------------------


Neurology. 2007 Aug 14;69(7):668-75.
Electrocardiographic abnormalities in patients with cluster headache on verapamil therapy.

Cohen AS, Matharu MS, Goadsby PJ.

Headache Group, Institute of Neurology, The National Hospital for Neurology and Neurosurgery, Queen Square, London, 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.

PMID: 17698788


Posted in Verapamil hydrochloride on 27 Mar, 2013 - 11:57 am

Hi Kba78,

Verapamil is probably the most widely used preventive drug in CH treatment.
Many report long-lasting relief over many years by using it.
It is a heart drug, a calcium channel blocker.
GPs have NO idea how to use it in CH.
Regular ECGs are required, when using Verapamil.
It's use and ECGs are best done under the close supervision of a Headache specialist, most probably a Neurologist, in Australia anyway.
Hound them for a baseline ECG before you start.
If already on Verapamil, hound them for an ECG anyway.
If they won't give you one, show them the studies and an ECG will be provided....
Get an ECG each time you revise dosages upward.

Finding the minimal effective dose for your CH is key to the success of Verapamil treatment.
Some need as little as 240mg, the same dose recommended for its use in heart conditions.
Some need as much as 960mg, if tolerated, to stop their CH.
Remember - find the minimum effective dose for CH reduction, as there is window between effective dose and toxic dose.

I am not a Doctor - verify all info with a specialist.

All there in the clinical study below.

Cheers, Ben.
--------------------------------------------------------------------------------------------
Headache. 2004 Nov;44(10):1013-8.

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

=======================================


Posted in Imigran (Sumatriptan) datasheets - GSK Australia on 24 Mar, 2013 - 10:52 am

Hi to all,

When visiting the GSK Australia site for info on Imigran, I was alarmed to see that Imigran is not listed under "products", or "Prescription medications". An on-site search of GSK failed to find the keywords "Imigran" or "Sumatriptan". I used keywords, file types, and domain name through Google's advanced search functions to deep search the GSK site, where I dredged up the links for Imigran Datasheets in PDF.
It appears they are now referred to by GSK as historical.
Maybe the patent has expired, making way for a generic.
Maybe they sold the drug patent, I will have to do more research and report back.

In the meantime, get 'em while you can:

http://www.gsk.com.au/resources.ashx/prescriptionmedicinesproductsc
hilddatadownloads/2295/File/46207A2D104EC3E360C0CDBE237EB182/Imigran_F
DT.pdf


http://www.gsk.com.au/resources.ashx/prescriptionmedicinesproductsc
hilddataproinfo/842/FileName/CC8BC3F4C28951EB73E0697BEA77A7F4/PI_Imigr
an_Tablets_Injection_NasalSpray.pdf


http://www.gsk.com.au/resources.ashx/prescriptionmedicinesproductsc
hilddatadownloads/2292/File/3C8F50838B89F5F7ED29E858C8A4A850/Imigran_T
ablets.pdf


http://www.gsk.com.au/resources.ashx/prescriptionmedicinesproductsc
hilddatadownloads/605/File/01C534CE97583BADDF9F9E42DF6AAE93/CMI_Imigra
n_MkIIInjection.pdf


Perhaps this shows a fundamental flaw in my idea of off-site links to manufacturer's datasheets. Back to the drawing board, I guess...

Cheers, Ben.


Posted in Hi from Pascoe Vale on 17 Mar, 2013 - 2:04 pm

Who would have thunk it?

A GP suspected case of CH is ruled out by consulting this site, the IHS diagnostic criteria, a qualified specialist and clinically validated by Indocid response!
Proof that both evidence-based science and this site works, as intended. You were very lucky not to have been officially diagnosed, or rather misdiagnosed by your GP as a CHer. You could have ended up with a very lengthy and frightening experience, indeed.

Glad you sought a differential diagnosis.
Sorry to hear about the MS news.

Good luck with it all.

Cheers, Ben.


Posted in Hi all on 17 Mar, 2013 - 1:04 pm

Hi Matt.

Long time, no see.
Not good to hear you are still suffering.

If its not too much trouble, would you share your experiences up to date with your Occipital Nerve Stimulator implant here?

Heaps of people have read and heard a lot on ONS from their specialists and Neurosurgeons and what they really want is to hear about it from a patient's perspective.
Many CH sufferers are now ONS candidates and seem very concerned about their potential ONS procedures. I get occasional posts/PMs from people that are thinking about it, but are scared to have it done. Your personal experience and input in this area would be invaluable to them all, I am sure.

You posting me that ONS info back when helped me to make a more informed decision about my own ONS candidacy and I can't thank you enough for it.

Hope all goes well for you and family.
Best wishes.

Cheers, Ben.


Posted in Trigger Point Therapy Workbook on 17 Mar, 2013 - 6:37 am

Hoppy, I am going to take this discussion somewhere else.
I will attempt to answer your questions, but it will not be easy.

Ben.


Posted in Trigger Point Therapy Workbook on 16 Mar, 2013 - 10:11 pm

Roger,

I am not talking about the long held myth and perception of the placebo itself, as taken in the form of a sugar pill, or fake medication, although relevant. There are other forms of placebo, sham surgeries, inactive implants, inactive magnetic stimulation and many more ways to see if a patient reports efficacy in the presence or absence of a specific treatment.
In a trial I have a copy of somewhere, some ONS implant recipients reported instant relief, only to find that their stimulators had not yet been switched on.
This helps establish baseline data (controls) for clinical trials and helps researchers to find very specific targets for therapies.
I refer to the placebo response in patients, which is a measurable one, with significant merits in medicine.

Cheers, Ben.

Hoppy, I will get back onto this later mate, I'm with you!
Just too tired and I feel another one coming on, gettin off here.


Posted in Trigger Point Therapy Workbook on 16 Mar, 2013 - 1:18 pm

Hoppy,
Thanks for your conclusion, glad you got that off your chest mate.
Relevance to the thread is difficult for me to understand...
For the record, my case of CH is refractory, or intractable and remains resistant to all prophylactic treatments. Apart from Imigran, I don't recall having said what "works for me", simply because nothing else does.
I am happy that you know what works for you - you must be one of the lucky ones who does.

Pain free days to ya. smile

Cheers, Ben.


Posted in Trigger Point Therapy Workbook on 16 Mar, 2013 - 9:34 am

Hoppy,

Perhaps this will better help to illustrate the point being made here.
Manual therapies are promising results they can't deliver, in the meantime, people are being harmed. Pseudosciences need to be heavily scrutinsed and if found lacking in efficacy, kicked out of the Universities that give their claims an air of credibility in the first place.

This is not to prevent consumers from making informed choices about alternative approaches, "whatever works for you". Check out the website and opening statements from Friends of Science in Medicine's Professor John Dwyer AO; Founding President FSM. http://www.scienceinmedicine.org.au/

This clip demonstrates an alarming consumer-driven trend in where practitioners of manual therapy are headed. These patients don't get to report symptoms, or treatment efficacy. This clip is not what I would call "Journalism", but this sort of application of "medicine" makes me sick to watch and as a taxpayer, you're paying for it - it's medicare subsidised, all there in Today Tonight's layman's terms:

http://www.youtube.com/watch?v=gv_rwscJ2oo

How much further will they go before they draw the line?
Many people have already been hurt seeking relief for cluster headache.

Cheers, Ben.


Posted in Barry T Coles on 15 Mar, 2013 - 11:13 pm

Hi to all,

The response over at the US cluster headache site has been overwhelming.
With well over 2000 posts there, Barry outdid himself on many an occasion and made a big impression. He helped many people.

The guest book, posted here for Barry:
http://www.legacy.com/guestbooks/thewest-au/guestbook.aspx?n=barry-
coles&pid=163209277&page=6


I am sure he would like to go out on a joke.
So, here's one he prepared earlier.

Paddy & Mick again:

Paddy and Mick are walking down a street in London .



Paddy happens to look in one of the shop windows and sees a sign that catches his eye.

The sign said: "Suits £5.00 each, Shirts £2.00 each, Trousers £2.50 per pair".

Paddy says to his pal, "Mick, look! We could buy a whole lot of dose,And when we get back to Ireland we could make a fortune.


Now when we go into the shop, you be quiet, OK?



Just let me do all the talking, cause if they hear our accent, they might not be nice to us I'll speak in my best English accent."

"Roight y'are, Paddy, I'll keep me mouth shut, so I will," replies Mick.

They go in and Paddy says, "I'll take 50 suits at £5.00 each, 100 shirts at £2.00 each And 50 pairs of trousers at £2.50 each. I'll back up my van and..."

The owner of the shop interrupts. "You're from Ireland , aren't you?"

"Well... Yes," says a surprised Paddy. "How der hell d' y' know dat?"

The owner replied, "This is a dry cleaners

http://www.clusterheadaches.com.au/member_avatars/cf3fa29ec5e9a718fad3309cc752efe2146.jpg


Posted in Trigger Point Therapy Workbook on 15 Mar, 2013 - 11:01 pm

Hoppy,

I agree, it ain't exactly the Readers Digest, it is aimed at the academics who usually read this sort of material. I am quite familiar with the K-I-S-S principle, use it all the time, but like I said at the beginning of the post, it is very complex. I can't "dumb it down" for anyone, nor would I wish to try. I can't reduce everything down to a "tweetable" 160 characters or less for those with a short attention span. Science is what it is, complexities and all.

Hoppy, I too am a layman, with some medical books, a dictionary, thesaurus, google, fingers and an insatiable appetite for learning. I make it a hobby of mine to go to bed at the end of a day, smarter than when I woke up. When I first got diagnosed, it was all confusing to me, but I sought out answers, still do everyday. No one said it would be easy, this having CH business... Gotta start somewhere mate. smile

If you would like access to my extensive library of medical reference books, drop me a PM anytime, I would be glad to share with you or anyone else reading this post.

Cheers, Ben.


Posted in Trigger Point Therapy Workbook on 15 Mar, 2013 - 3:55 pm

Roger,

The Placebo response is extremely complicated and still the subject of much research.
(See Pr Rolan's video lecture on pain, where he briefly covers placebo response: http://media.adelaide.edu.au/researchtuesday/video/RT_Feb_2013_stre
aming.m4v
)

Perhaps this explains some perceived benefit response in patients, to "trigger point therapy".

Cheers, Ben.

Placebo response to manual therapy: something out of nothing?

Abstract

The mechanisms through which manual therapy inhibits musculoskeletal pain are likely multifaceted and related to the interaction between the intervention, the patient, the practitioner, and the environment. Placebo is traditionally considered an inert intervention; however, the pain research literature suggests that placebo is an active hypoalgesic agent. Placebo response likely plays a role in all interventions for pain and we suggest that the same is true for the treatment effects associated with manual therapy. The magnitude of a placebo response may be influenced by negative mood, expectation, and conditioning. We suggest that manual therapists conceptualize placebo not only as a comparative intervention, but also as a potential active mechanism to partially account for treatment effects associated with manual therapy. We are not suggesting manual therapists include known sham or ineffective interventions in their clinical practice, but take steps to maximize placebo responses to reduce pain.

Conditioning as a mechanism of placebo-related hypoalgesia

Placebo-related hypoalgesia is enhanced through a learning/conditioning effect. For example, a person conditioned to experience relief from a headache each time he takes an aspirin may obtain similar relief if, unbeknownst to him, he is given a sugar pill of the same size and shape as the aspirin. Experimental studies support this mechanism of conditioning for placebo-related hypoalgesia.

Full pdf:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3172952/pdf/jmt-19-01-0
11.pdf


Posted in Wow it's hard getting a script for Oxygen!! on 14 Mar, 2013 - 1:14 pm

Sspocko,

I love a self motivated researcher and go-getter!
Excellent work.
Good luck with the O2. smile

Cheers, Ben.


Posted in Trigger Point Therapy Workbook on 14 Mar, 2013 - 1:11 pm

Hi to all,

Here is an open link to the much discussed "Trigger point therapy workbook'".
It is widely and freely available online as a pdf, quite common.
As a general precaution, have your virus scanners updated and switched ON.
http://depositfiles.com/files/xarr8098x
Click on the "regular download" button, fill in the captcha code, wait your 60 seconds time, press the "Download the file" button and select your destination folder.
Decompress the file with winrar, or winzip.
If you don't have winrar, you can download it here: http://www.rarlab.com/download.htm
Open the pdf and start reading! Easy!

You be the judge.
I would be glad to hear diagnosed CHer's opinions and experiences on the merit of this particular treatment in helping CH.
We know Les is a passionate advocate of this approach.
Chapter 4, page 48 of the text, makes reference to cluster headache.

Enjoy, Ben.


Posted in Imigran Concern on 14 Mar, 2013 - 12:48 pm

shane1837 said:
My questions : Can an old split tablet become 'unstable' due to moisture, or any other sort of degradation and become toxic/unstable? I was biting them and then swallowing with water - could the acid from my saliva have degraded the tablet in any way when it was left in the container? Can only taking a quarter cause this reaction due to an imbalance of ingested ingredients? Also, can sumatriptan be harmful to a non migraine sufferer(which I believe I am) even if they only take a very small amount? There was no intense headache or weakness of muscles one one side or anything after the reaction so I'm confident I didnt have a stroke or anything too serious. Thanks for the help. Shane.
iconiconicon"


Hi Shane.
Sorry you had to find the site.
Imigran was designed primarily for use in Migraine patients.
The tablets you mention usually come in sealed packaging with an expiry date.
This is usually around 18 months, in my experience, but it also depends on how long your Doctor had them laying around.
Tablets open to air can oxidate or become unstable.
My specialist (An expert in this area) once told me, as a general principle, never take Medications outside of their expiry date. Most drug datasheets explain that a drug used past its expiry date may become ineffective, may work differently, may interact with other drugs differently, or may even cause harm.
I could only speculate on the degradation from contact with saliva, but I suspect it would not have helped in storage of the medication.

Imigran tablets should not be split up.
Unless a drug has a line through the centre like these in the picture, where it is designed to be split, it should be taken whole, with regard to specific prescribed dosage in mind. Your Doctor may also occasionally instruct you to halve a pill, or cut one with a pill-cutter to achieve desired dosage.
This is not the case with Imigran.
https://encrypted-tbn1.gstatic.com/images?q=tbn:ANd9GcSX1rkU9Ei3LYrzDVI7GMphNIiykG19rPafxdAWJH_hyud3q7LTjA
Some are drugs are designed as a single unit pill, with enteric coatings for different or slow-release delivery methods.
Imigran is not a slow release drug, quite the opposite, a version called Imigran FDT (triangular salmon coloured 50mg) is a Fast Dispersion Tablet, designed for quick release and fast effect. Oral absorption of Imigran tablets is poor, typically around 15% of the 50mg oral drug (as succinate) is bioavailable and usually the full 50mg (or 100mg in some cases) is required to abort a cluster attack. This is why CHers often use Imigran injections, with 96% bioavailabiility when injected in 6mg doses.
Essentially the same drug, but with different dosage and delivery method.

Imigran probably shouldn't space you out.
But it seems it is not well tolerated.
I threw up my first few, but persisted and now they are a mainstay, I used an FDT last night. Perhaps you may want to take Maxalon to prevent vomiting, as I did.
With practice, you can keep them down.

This does not mean I recommend that you take Imigran at all.
You need to see you Doctor about your dosages and reactions to them.
Imigran doesn't work for everyone.

Harm from Imigran may occur to any person who ingests it, no matter what the headache type. So have a talk with your specialists.

The symptoms you describe don't sound like CH to me.
A Headache of 3 days duration could be many other types, but almost certainly rules out CH.

I am not a Doctor, so double-check me.

Cheers, Ben.


Posted in I think I have the answer! on 14 Mar, 2013 - 7:52 am

Les,

"provoking cluster-type referred pain" by means of "myofascial trigger points (MTrPs)" is not a CH Les. Neither is a nitrate induced CH, nor an alcohol induced CH.
They are all induced. Ask anyone getting belted every morning at 4am, this is not "induced".

"Combined with prophylactic drug therapy, injections (local anesthetic) were associated with significant improvement in 7 of the 8 chronic cluster patients" - this is not CH relief from "trigger points".

induced: past participle, past tense of in·duce (Verb)
Verb - Succeed in persuading or influencing (someone) to do something.
Bring about or give rise to: "measures that induced a change".

"Myofascial trigger points in cluster headache patients: a case series."

I know the title is sexy Les, but do you actually read the stuff you post?
This particular study has no relevance to the studies in the trigger point workbook or the point you attempt to make about it.
A search of "Travell & Simons" studies in trigger point therapy works brings up more sales opportunities than I have seen in a while. Their over 3000 times cited link, redirects not to a trial result, but to a book sale.

They also fail to make a differential distinction between headache types, subtypes or syndromes, as per the IHS diagnostic criteria:

"According to Doctors Janet Travell and David Simons in their widely acclaimed medical textbook, Myofascial Pain and Dysfunction: The Trigger Point Manual, myofascial trigger points (tiny contraction knots) in overworked or traumatized muscles are the hidden and unsuspected cause of most headaches. This includes tension headaches, cervicogenic headaches, cluster headaches, vascular headaches, and migraine headaches."

- "hidden and unsuspected cause of most headaches".
I know a scientist or two who would object, backing themselves with fact.

Pressing on nerves to induce cluster-like pain is a trick many illegitimate practitioners use. It is a parlour trick and should be rooted out of Universities.

Due to the training boom of the last 20 years (No Australian HECS bills for overseas students either...take the training at taxpayer expense and run...), a lot of crap has infiltrated Universities and is dragging them down as a result. Friends of Science and medicine are attempting to do this. Go back to the FSM link and have a look at the research that 75% of all academics consider to be quackery, it is long.

Did you know you can submit a thesis and obtain a Doctoral PhD on "The Beatles" Les?
Hardly contributing to Science.

True CH happens without a known causative factor.
That's why we are all here.
If Travell & Simons have found a unifying causative factor in CH, my specialist is out of a job. I am sure he would be delighted.

Unfortunately, I have to get off to the hospital now.
I will be back onto this more thoroughly later, if necessary.

Ben.


Posted in I think I have the answer! on 13 Mar, 2013 - 9:10 pm

Sorry, server dropped out on me as I was editing my post.
I must've taken too long.

Apologies Les. I checked the trigger point therapy book today, we will have to agree to disagree. The Author's lump Cervicogenic Headache, Tension Headache, Migraine and Cluster Headache all into one group, even going on to classify them all as "whatever headache", trigger point therapy will fix it. It doesn't say how it is supposed to work. I (and most practicing medical clinicians) need to be shown clinical trials that validate this sort of blanket statement by the Authors. I would be glad to read it, if you can locate clinically validated evidence to support the efficacy of any manipulative therapies in treating cluster headache.

It's been a tough week finding out about Barry and all. Unfortunately, I was the one who broke that news to the US site, much to their grief and surprise. Today I have been fielding messages from people I don't know, explaining a situation I don't understand. I hardly feel like I am in a position to do such a thing. Who knows? There is no instruction manual for coping with this stuff.

I am sorry to all, I should do better by all the people on the site.
I am not the only one suffering.
I will do my best. I am going to give the site a rest until I am better, sorry again.

Ben.


Posted in I think I have the answer! on 13 Mar, 2013 - 8:36 pm

Duly noted.

I am working hard on this site, while getting my ass kicked by CH here, with little help from anyone.
37 years old - 34 years of it - 4-6 attacks per day, 10 months per year.
I am not making any excuses. Most here know what it is like.
Perhaps this science based evidence would help to explain my sunny disposition: http://www.ncbi.nlm.nih.gov/pubmed/22665916

Ben.


Posted in I think I have the answer! on 13 Mar, 2013 - 7:31 am

Onya Kim.

Complimentary and alternative medicines show ZERO efficacy in CH.
Research it thoroughly for yourselves and you will see.
Seek evidence based, credible science coming out of accredited public teaching Hospitals, their Universities and Labs.
READ Journal impact factors.
CHECK how many other Scientists have cited the documentation.
ASK yourself; does this person/website/product have a vested interest in selling something?
If so, it is probably BS.

To the newbies.
There are a lot of people with commercial interests standing by, ready to profit from your pain. Buyer beware.
Do some research yourselves.
READ the tabs on the left.
Got an idea? Then Google it.
Use advanced searches, deep search every site, be selective in the file types you seek. FIND every clinical trial. READ every clinical trial.
Don't understand medical literature? SHOW it to your specialists, as I do.
ASK QUESTIONS of your Doctors and specialists, make them work for their money.

Before you waltz in here without a cursory glance at the resources, asking basic questions, READ - do YOUR OWN research, for FAQ sake!

I am here to help, but I am not a free consultation service for those too slack to do a basic google search or read the available resources on the left, just over there.
http://www.antisocialmediallc.com/wp-content/uploads/2012/02/Arrow-Blue-Outline-Left.jpg

Cut the crap, indeed.

Ben.


Posted in Barry T Coles on 12 Mar, 2013 - 6:54 pm

Hi to all,

It is with a heavy heart that I bring sad news.
Our resident O2 expert and long time Moderator, Barry T Coles has sadly passed away.
Reportedly, on the 23rd of February, Barry lost his battle with lung cancer.
http://www.westannouncements.com.au/obituaries/thewest-au/obituary.
aspx?n=barry-coles&pid=163228139&fhid=14421


If it were not for Barry, many of us would still be wondering how and where to get an O2 supply and how to use it in cluster headache.
Barry was a big help to many of us in times of suffering.

My sincere condolences to his family and friends.

Barry will be missed on the site.

In pain no more.

Rest in Peace, Barry.