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Posted in Lsd for CH`s on 27 Jul, 2013 - 8:41 am

Hi Toddy
Welcome, sorry you had to come looking...
The US had a 'clusterbusters' website - not sure if it's still operational, but it may be of interest to you - as Peter said do your research and some of the info you need may be on that site.

Happy travelling

Posted in New and struggling badly on 27 Jul, 2013 - 8:36 am

Hi Trent

Sounds like you're having a tough time of it - my thoughts are with you.
I can't add much more than Peter, as usual he's got everything covered, but I do recommend following a healthy diet and talking to your GP about the vitamin D3 stuff.

A couple of years ago, CH was crippling me and I noticed the attacks were much much worse after eating any processed food - so I just stopped eating it, upped the fruit and vegies and cut out the crap. This brought about a huge improvement. Less attacks and less severe. When I read about the D3 stuff, I jumped on board with a modified version of that and more improvement still.

All the best Trent, whichever way you decide to go, and keep in touch
kind regards

Posted in new on 24 Jul, 2013 - 2:03 pm

Hi Colin
Welcome to the site but sorry you had to come looking..
Glad you are sorted with a neurologist and have organised appropriate drugs + oxygen. Sadly it's a common story of CH sufferers being put through the wringer before finding a GP / specialist who takes the condition seriously.
Also pleased Batch's regime is working for you - works for me too! But I'm not going to go so far as to say "I'm looking forward to my next cycle..." ha ha
Anyway Colin, welcome aboard and I'm sure the others will chime in with their welcome over the next day or two
Take care

Posted in Batch's anti-inflammatory regimen for CH on 25 Apr, 2013 - 10:36 am

Hi all
I started on Batch's regimen when it was first discussed on the site by Barry Coles in March 2011. Prior to this my CH had been quite debilitating - I'm episodic and a couple of cycles had been up to 6 attacks a day, giving me no option but to bring my annual leave forward and take 3 weeks off work in order to try and get a handle on things.
I did a bit of internet research plus talked to my GP about the effects of following such a regimen and was simply told (with disinterest) "that taking supplements within the RDI was unlikely to do me any harm".
My pharmacist was heaps more enthusiastic and very helpful, but again cautioned me to stay within the RDI if I was planning to follow this long term.

The regimen I ended up with is as follows -

Magnesium orotate (3 x 400mg) taken at night for better absorption
Calcium carbonate 1000mg (taken in morning)
D3 1000IU (taken in morning combined with the calcium)
Taurine (1/4 teaspoon) + honey (1 round teaspoon) - in breakfast smoothie with milk, yoghurt and fruit (banana preferred as it has potassium)
I also take 1/2 Berroca in the morning - as well as the B group vitamins, the 1/2 tablet contains 50 mg calcium, 50 mg magnesium, 5 mg zinc and 250 mg vitamin C.
I take no other medication, prescribed or otherwise.

Prior to started the regimen, I'd had a bit of an inkling that my diet was also playing a part, so I had been recording what I'd eaten in my CH diary -
I was using the diary available on the site, and found a few things of interest there.
In a nutshell - headaches were worse if I ate crap.
I also checked out body inflammation and pH levels on the internet - lots of "alternative" stuff, but no real medical evidence re diet and pH - but what the heck, I applied the "unlikely to do any harm' test and cut down drastically on red meat, sugar and dairy, and upped the vegies.
As well as starting the regimen and overhauling the diet, I started better sleep habits - going to bed and getting up at pretty well the same time every day, using heavier curtains and getting rid of the clock radio with its annoying red light.

The outcome - pretty well immediate improvement! Cycle continued on its merry way, but less intensity and less frequency;
so continued with regimen and other changes when out of cycle to see what the longer term effects were.
Next cycle - spring 2011, amazing!! Cycle only lasted a month (had been around 11 week cycles previously) and again, much less frequent (about 10 headaches / week) and less intense - nothing over a 6.
Since then a continued improvement - cycles occur with change of season but last only 2 - 3 weeks, have around 4 headaches a week. Pain around a 4 - easily managed with a heat pack.
Headaches now only last 20 minutes or so, whereas before 60 - 75 minutes was the norm. The only hiccups have been when I've got a bit cocky and drank alcohol mid cycle - the devil is always there waiting for you to slip up!
I haven't even bothered to change my status to red for the last couple of cycles because the whole thing is pretty well over by the time I think about making the change.

So - an appraisal of the whole thing -
Firstly, CH is only a "minor inconvenience" to me at the moment and I'm elated about that.
Has Batch's regimen made a difference?
Well, to be completely honest, I don't know. As I have said above, as well as starting the regimen 2 years ago, I also made a number of dietary changes;
and as a female at 49 years of age it's fair to say I'm undergoing normal hormonal changes associated with ageing as well.
But, my instinct tells me it has.
My advice - for what it's worth - is to give it a go. As my GP and pharmacist noted "it's unlikely to do you any harm", and be prepared to commit for the long term as it may take a while for any benefits to show.

Let me know through the thread or through PM if you need any more info - very happy to help where I can.

Am hoping this posts - I'm using notepad and copying because like many others I'm having trouble....

Posted in Newbie from Scotland on 23 Apr, 2013 - 9:07 pm

Hi chronic
Welcome to the site, but sorry you have had to come looking.
Gabapentin is an anticonvulsant medication, with some indications for use as a migraine preventative. I can't imagine it being used as a first port of call for CH.
Just curious whether you have been prescribed other medications and what if any success you have had there


Posted in Batch's anti-inflammatory regimen for CH on 15 Apr, 2013 - 6:53 am

Thanks for all your work with this Ben and great to see you green

Posted in These therapies stopped C H Dead on 28 Mar, 2013 - 4:45 pm

jammy dodger
The anti inflammatory regimen you have adapted (or plagiarised?) is serious stuff, and thanks to its creator Batch and our recently departed CH friend BTC, the last 18 months of my life have seen a remarkable reduction in both the frequency and intensity of my CH.

But please tell me what is all that crap about massaging midstream urine into yourself?
WTF can that possibly achieve?

I'm really curious...


Posted in Hello from the UK on 23 Mar, 2013 - 6:44 pm

Hi Bren
Make sure you keep that doctor's appt - double dosing on nurofen won't do you much good in the long term ...

Couple of other tips - avoid alcohol. I don't think there's a CHer anywhere who isn't triggered by alcohol; avoid processed meats such as ham, bacon, pizza toppings especially - the nitrates used as a preservative in these foods can also trigger a CH.

A few folk have reported that downing an icy cold energy drink - mother, V etc, at the start of a CH can work wonders, might be worth a try

Anyway, let us know how you get on at the docs

Cheers and pain free days

Posted in Hello from the UK on 22 Mar, 2013 - 7:06 am

Hi guys
Welcome but sorry you had to come looking.
All the best with the site Craig - looks good
Brendan - less than a week for a diagnosis - wow must be a CH record!!!
Loads of info on the left for you Brendan, everything from a full run down on medications, oxygen therapy plus info for family / friends. Well worth taking the time to check out.

So where to from here Brendan - what (if any medication) are you using? Any specialist referrals?

Keep us informed


Posted in Wow it's hard getting a script for Oxygen!! on 16 Mar, 2013 - 8:29 am

Hi sspocko
Great news. Everyone likes a story with a happy ending!

Thanks for sharing

Posted in Wow it's hard getting a script for Oxygen!! on 14 Mar, 2013 - 8:29 pm

All the best for a great night - let us know how you get on


Posted in Barry T Coles on 12 Mar, 2013 - 7:06 pm

Thanks Ben for sharing this info

I join with you in offering condolences to family and friends

Posted in 57 weeks free and back again :( on 12 Mar, 2013 - 7:01 pm

Hi guys
Re the sinus connection - an article I have suggests some male CH sufferers have narrowing in their sinus cavity - I can post the link if anyone's interested in reading more.

Unfortunately, even if a link is discovered, it doesn't mean that sinus problems are the cause of CH, it simply means that sinus problems can be associated with CH.

The nasal irrigation that Leslie refers to involves tilting the head and pouring salt water up one nostril so it runs back out the other - there's heaps of info on Google if you're interested in finding out more.


Posted in Wow it's hard getting a script for Oxygen!! on 05 Mar, 2013 - 5:13 pm

Hey Sspocko
Check out the Practitioners tab - scroll down to the bottom left of the page and see if there's anyone listed there you are able to make an appointment with. All the medics listed there have been recommended by members as being knowledgeable and understanding of CH.

Good luck


Posted in Imigran Concern on 05 Mar, 2013 - 5:06 pm

Hi Shane
Sorry you're having such a tough time of it at the moment.

Further info on sumatriptan (imigran) - click on the medications tab on the left of the page, and then scroll down to sumatriptan / imigran (not sure which name is listed) you will find more info on how the medication works, possible side effects etc.

A quick read of the info there shows that while the majority of folk tolerate this particular medication well, it can be pretty risky for some.

Get yourself back in front of a medic and insist on being checked out properly.

Let us know how you get on!


Posted in 57 weeks free and back again :( on 04 Mar, 2013 - 9:16 pm

Hi Katy
Sorry to hear CH is back for you.
Many people with CH seem to notice the seasonal thing - although not much is known about CH, the experts agree that there is some abnomally with the hypothalmus. Among other things, the hypothalmus controls the body clock - this is why CH can occur at the same time every day / night as well as the seasonal trigger.

I'm not much of an expert on the medication side of CH, preferring to make lifestyle changes to try to manage my CH. As well as avoiding any food triggers, as you do, I have also found that sticking to a fairly rigid sleep / wake cycle - for me that means being in bed by 11 and up at 6.30 - 7 , even weekends, as well as making sure my bedroom is really dark seems to help. I realise this isn't going to be much fun icon especially if you have an active social life, but it might be worth a try for a few days to see if you can't beat this current episode.

All the best!

Posted in Is there a Preventive Medication left that I have not tried? on 30 Nov, 2012 - 7:29 pm

Hi Ben
I've been using a similar routine for a year or so now - I use ural as an alkaliser, rather than salvital and add magnesium. Certainly hasn't "cured" me but things have been one hell of a lot more manageable.
Good luck ..


Posted in Pepsi on 15 Nov, 2012 - 4:57 pm

Hi Gabrielle
Thanks for the info - well put and very informative, especially the bit re sugar, insulin and blood vessel dilation.
Glad you're pain free - I've been travelling pretty well also

Sorry Leslie for hijacking your post ...


Posted in Pepsi on 14 Nov, 2012 - 9:49 am

Hi all
Peter - just wondering where you found the info re the fructose being a possible CH trigger? I've recently read a couple of books by Aussie David Gillespie; "Sweet Poison" and "Big Fat Lies"; both of which examine the dangers of the sugars (50% fructose) and vegetable oils which make up so much of our modern diet. A possible link between fructose and CH would be great news 'cos sugar is pretty easy to cut from the diet.


Posted in calm cluster headaches with KUDZU on 23 Jul, 2012 - 10:24 am

Hi all
I posted a while ago on kudzu - here is the link

My corner shop sells a drink marketed as a hangover cure which contains kudzu - I haven't bothered to try it - I will get the name of it next time I'm there.


Posted in Survey of effectivness of online support groups for headache disorder sufferers. on 23 Jul, 2012 - 10:18 am

Hi Heather
Let's say green with the slightest tinge of red!!
I'm getting one CH per night, about an hour or so after I fall asleep - good news is it's pretty tame. Am using ice pack plus fan next to bed on full speed (plus electric blanket!!), am able to "breathe" thru it if you know what I mean. Generally all over in 20 to 30 minutes.

Have decided to stay positive, not game to touch alcohol though.

Sorry to see you're still red and my thoughts are with Matt who is also having a tough time


Posted in Survey of effectivness of online support groups for headache disorder sufferers. on 23 Jul, 2012 - 9:27 am

Hi guys
I completed the survey this morning. Very easy, didn't take long.


Posted in The Watson approach - Zero validity in treating Cluster headache. on 09 Jun, 2012 - 9:37 pm

Hi k2
Thanks for your perseverance with this.
The truth is now plain to see and CH suffers will not have risk emptying their wallets and battering their emotions due to misrepresentations from this particular mob of charlatans


Posted in Mother's Day on 17 May, 2012 - 5:19 pm

Hi Heather and thanks for the well wishes.

I scored very nicely this year, with some new PJs and reading material. Best pressie was a painted wooden block from my grandson - with a message to "run around the block 5 times" to keep fit !!!!

How's the shoulder going?


Posted in Imigran on 17 May, 2012 - 5:13 pm

Hi all
Am back from hols and had a great time!!!
No HA first two days then got a bit overconfident and had a couple of drinks - HA back with a vengeance.
Sadly found imigran (1 x 100mg) not too much help and it's probably a bit cost prohibitive to go for a higher dose.


Posted in Hello to all on 12 May, 2012 - 11:00 am

Hi again Paul
Touch wood things are pretty well okay with me at the moment. I'm getting only one attack a night, usually a couple of hours after I go to bed, with pain at about a six. I've just got hold of some imigran, so will see how that goes.

Definately take the time to read the info on the site and check out other member's experiences with what works for them. Good idea to use the diary as well. Before I found this site 18 months ago, CH was ruining my life. I was being hit up to 6 times a day and needed time of work. Night time was awful, I was exhausted but too scared to go to bed knowing what was in front of me.

Support from the members here, as well as a few lifestyle changes, has been my saviour.
I now take calcium, magnesium and vitamin D3 supplements. I avoid processed meat. I try to go to bed and get up at the same time each morning - no more weekend sleep-ins sadly. What I can do though, is get up at the usual time on weekends and then jump back into bed late morning for a couple of hours to try and catch up on some zzz's. Go very steady on the alcohol - I can tolerate a light beer or half nip - any more and I'm in for it.

Feel free to vent as needed or ask any questions. Sharing the pain with others who really understand can make all the difference


Posted in Hello to all on 12 May, 2012 - 9:59 am

Hi Paul

Welcome and glad you've found us - but sorry you had to come looking

You'll find there's stacks on info on the site as well as great group of "fellow sufferers" who are more than glad to help out with advice and support when needed.

Glad to hear the imigran is doing the trick and you seem to have the beast under some sort of control - if you check out the imigran topic you may find some info of interest re multiple scripts / cheapest places to buy etc

Stay in touch


Posted in Imigran on 09 May, 2012 - 11:55 am

Hi everyone
Thanks for your input - really appreciated.

Welcome Steve - I see you have been a member for a little while but have just made your first post - so hi from all of us here

Thanks again, I will let you know how I get on


Posted in New to OZ and the forum - my story on 08 May, 2012 - 8:14 pm

Hi Scott

Found this site:


Posted in Imigran on 08 May, 2012 - 7:35 pm

Hi Heather
Thanks for the info. I think I might also go and have a yarn with the pharmacist about only taking half a tablet -- whether it will affect how the medication is absorbed etc.

Hope all goes well Friday


Posted in Imigran on 08 May, 2012 - 5:38 pm

Hi all
Saw a new GP today - everything seemed very positive. He spent heaps of time looking at my HA diary, asking questions etc and seemed reasonably knowledgeable about CH.

But .... to cut a long story short, the reason I went was to get a script for abortives of one kind or another - I haven't been down the medication route as of yet but I'm going away next week with a group of girls cruising up the Qld coast - super budget - four to a cabin that's probably no bigger than the average bathroom. As you can imagine it's probably not the best environment to be dancing with the devil at 1am ....

The script he gave me was imigran tabs 100mg - take a maximum of 3 a day etc etc. The thing is, there's only 2 to a script and they cost $35.00.

I have 2 repeats - so a total of 6 tablets - if I manage to fill all the repeats before I go, at a cost of $105.

As I stated before I haven't been down the medication route before and i'm not 100% sure whether to fill the scripts. I noticed in the medication info that the tablets take quite a while to work and they are also ridiculously expensive for something that theoretically could only last me two days.

I'm going back to the GP on friday to get some blood test results - and I'm wondering if I should go with the imigran or ask him for a script for something else.

I know we're all amateurs at this, but any feedback would be really helpful for me in making my decision.

Cheers and sorry for the saga


Posted in New to OZ and the forum - my story on 08 May, 2012 - 5:20 pm

Hi ScBuck
Welcome to the Forum, sorry you had to come looking but glad you have found us!!
You raise a number of interesting points - firstly, the hereditary link and the fact your dad is no longer as troubled by CH. From time to time the question of long term prognosis for CH is raised, but there's no real answers as to whether the condition gets better "all by it's self" as we age - can your dad recall the time his CH started to improve and if anything seemed to trigger this?

Secondly - nitrates - for a while I've suspected that nitrates tend to worsen my headaches as well. Over the last 18 months or so, I've started recording what I eat along with my HA characteristics and anytime I eat processed meats - especially pizza, McD's etc - I seem to be really in for it. Not being conscious of "hidden" nitrates, I haven't gone as far as checking food labels but will certainly consider that from now on.

You say you are new to this country - can I ask where you are from?

Take the time to check out the links to the top and the left of the page. There's heaps of info there that may be of use to you or another family member.

Welcome again and thanks for sharing your story


Posted in I am off again--AGAIN--and now I am back-- on 07 May, 2012 - 12:33 pm

Hi Heather
Great idea - go somewhere nice for a few days and be kind to yourself.

Posted in Medication Overuse Headaches on 07 May, 2012 - 9:39 am

Hi Nell and welcome

As Peter says so beautifully - it's great you've found us but sorry you had to come looking.

Peter has provided you with a wealth of information - the only thing I can do is to echo his words and encourage you to check out the links on the left, especially the external link to the International Headache Society. When you're in the site, you can do a search for Medication Overuse Headache. The info in there may give you a bit of a starting point when considering your options.

Stay in touch, I'm keen to know how you get on


Posted in A Cure for Cluster headaches!!! on 05 May, 2012 - 10:48 am

Hi Peter
Welcome and thanks for posting

I must say I find the whole busting thing more than a little intriguing and I'd be interested in hearing more of your story - when diagnosed, how long suffered, other things tried etc.


Posted in Here I go again and again on 04 May, 2012 - 8:33 pm

Hi Leathal
Sorry you're back red again after only 10 days. No good.
Hope it's only a bit of a hickup and you'll be green very soon


Posted in New to forum long time CH alien on 04 May, 2012 - 5:27 pm

hi zRoYz
Welcome to the site but sorry you have to be here

(Welcoming new sufferers is a bit of an ozymoron - it's a bit like when you visit the GP and the first thing they do is ask how you are.....) anyway that's my thought for the day.

I think many of us share your frustration with misdiagnosis and uninformed doctors, but I also think it's safe to say there are (a few) informed doctors out there, it's just a matter of looking. Surely in this day and age we shouldn't have to just "soldier on" with what is described as probably one of the most painful medical conditions known to man. Check out the practitioner tab to the left of the page - members have the opportunity to recommend GPs and specialists they find helpful and depending on where you live it may point you in the right direction.

It's also probably safe to say that over the last decade or so there have been advancements in the number and range of drugs available to treat CH, either as a preventative or abortive. Advancements have also been made in the effective use of oxygen as a treatment for CH. Check out the tabs to the left for more info - this can be printed off, taken to your GP and discussed in more detail.

Stay in touch and let us know how you get on


On a personal note, regular uses of the site will see I'm back in the red after only 6 weeks remission. Don't know what the go is there ........



Posted in Nerve Implant on 03 May, 2012 - 4:56 pm

I really feel for you. Am hoping all goes well.

Has your treatment been cancelled or just postponed?


Posted in Into another cluster period on 03 May, 2012 - 4:53 pm

Hi Anie
If you go to the home page and scroll down to the Practitioner tab on the left, you will find info on recommended medics in each state. Alternately send a private message to member (and moderator) Barry T Coles - he is from WA and may be able to make a personal recommendation.

Peter is spot on right - managing CH is much more than managing the pain.

Good luck in your search


Posted in Lump on the back of head? on 01 May, 2012 - 5:45 pm

Hi Lauren
I had a bit of a "google" too of cluster headaches and lumps on head, and found a few references as well - very interesting!

Hope all goes well with scan and medication - keep in touch


Posted in Nerve Implant on 01 May, 2012 - 4:46 pm

Hi Matt
Thanks for the update. Fingers and toes crossed for a great outcome for you.


Posted in My meds seem to be working on 01 May, 2012 - 4:44 pm

Hi Improving
Welcome !!
Sadly, you're not the first person to be misdiagnosed and you certainly won't be the last ... I guess it's because CH is a fairly rare condition, that doctors tend to look at the sinus and jaw area for the "cause" of the pain. Many members report being referred to ENT specialists, dental surgeons and physios/chiros before getting a diagnosis. This is not only frustrating, but probably quite an expensive exercise, that adds to the suffering and isolation felt by those of us with CH.
Really great to hear you are in contact with a neuro who could point you in the right direction. I'm certainly no expert on CH medication, but both verapamil and imigran seem to be fairly commonly prescribed.


Posted in Hi I'm from the member on 30 Apr, 2012 - 8:38 pm

Hi Schultzy

Glad things seem to be going okay with the relpax - hope it stays that way.

You say you're very tired - understandable. I don't know about you, but I find that sleeping in pretty well guarantees an escalation in the CH. Last cycle though, I found that if I got up at the usual time (especially on weekends), then did a few things before going back to bed for an hour or so, then I'd feel more rested without my Ch getting any worse.

Take care

Posted in Lump on the back of head? on 30 Apr, 2012 - 8:32 pm

Hi Lauren
Sorry you had to come back, but glad you did (if you know what I mean!!).

I haven't heard of anyone having a lump on the head, but no doubt other members will chime in with their own experiences.

Glad you are getting yourself straight back to the doctor

Let us know how you get on


Posted in Into another cluster period on 30 Apr, 2012 - 8:29 pm

Hi Anie

I'm not really sure I should say welcome back ... but I'm glad you've posted again to share what's happening with your CH at the moment.

Agree the aspirin, especially aspro clear, can make a difference. Not sure what you mean by the injection of narcotics though - do you get yourself to hospital when things get really bad?

Have you spoken to your GP / specialist about preventative / abortive medication you can use while your CH is around? I'm not much of an expert on medication, but you'll find information in the tabs to the left of the page. Maybe print some and take along to your appointment. If you're not keen on using medication, you could consider using oxygen. There's info about that to the left of the page as well.

Keep us informed with how you're going


Posted in Hi I'm from the member on 30 Apr, 2012 - 8:17 pm

Hi Schultzy

You sound to have a very hectic, but exciting, life. Good luck with getting your speech therapy practice up and running.

Unfortunately, alcohol seems to be a trigger for most CH sufferers - I'd suggest giving it a miss for a while and seeing if you have any improvement.

How did you get on at the doctor's?


Posted in Hi I'm from the member on 29 Apr, 2012 - 5:22 pm

Hi Schultzy
Welcome but sorry you had to come looking .....
I'm sure you'll find this site a fabulous resource when dealing with CH. You've also found a group of people who understand exactly what you're going through, and, who between them have stacks and stacks of information.

The tabs to the top and the left of the page will also provide a great deal of information - taking responsibility for your own health by gathering as much knowledge as possible is time well spent when dealing with a condition as rare and misunderstood as CH.

You say you had a four year break - have you any idea what might have caused your CH to resume?

Are you currently under the care of a GP / specialist for your CH?

Re the massage - if you're seeking a bit of relaxation and "me" time, then go for it and enjoy. If you're seeking a cure for your CH then you're probably wasting your money.


Posted in I am off again--AGAIN--and now I am back-- on 28 Apr, 2012 - 9:23 pm

Hi Heather
Hoping all goes well for you over the next couple of weeks - you certainly have a lot on.


Posted in Nerve Implant on 27 Apr, 2012 - 5:56 pm

Hi Matt
Continuing to think of you with fingers crossed for a positive result. Thanks for the update and take care

Posted in Red Bull on 25 Apr, 2012 - 5:30 pm

Hi Heidi
A word of warning about using caffeine -
It can apparantly contribute to Medication Overuse Headache in people who are susceptible -

The first article focuses on migraine headaches, but the second covers headache in general


Posted in Idenitfy with CH symptoms :-( on 10 Apr, 2012 - 5:44 pm

Hi H and welcome to the site

Yep, a whole site dedicated to Aussies with CH and their supporters. It's great that you have found us, but sorry you had to come looking...

The diagnosis / cause merry-go-round is something that most of us can relate too. If you spend time browsing the posts, you'll see many CH folk have gone the same way ... I guess it's becaause CH is a pretty rare disease, with less that 1% of the population affected. The rarity of the condition also means that people in general have no idea about the pain that's involved. People (again in general) are prone to think that a CH sufferer is attention seeking or malingering - after all, it's "only a headache" and "everybody gets headaches...

I would have to agree that anxiety / stress impacts on CH. I don't know what the answer is here, when your work seems to be the cause of most of that stress and anxiety. Do you have an employee assistance program when you can access confidential counselling? Perhaps just talking to someone may help. Other members may have faced similar situations and have other suggestions.

In the meantime, remember there is always someone here who understands your pain.

Take care

Posted in Help :( on 10 Apr, 2012 - 5:19 pm

Hi Jodie

Welcome to the site, but sorry things are so tough for you at the moment.
Don't worry at all about the long post. Everyone here either has CH or cares for someone who does, and we know how horrible things can get.

You mention a few things in your post, so I'll try to go through one issue at a time with some suggestions you might find helpful.

Firstly, your CH. I'm wondering whether you have seen a specialist (neurologist) or just a GP? If you haven't yet seen a specialist, try and get a referral.
Keep a headache diary - there is one on this site you can use. Some people notice that certain things - such as alcohol, processed meats or sleeping at irregular hours - can make their CH worse. By recording all these things and how they affect your headaches (if at all), you can sometimes come up with some self help strategies to reduce the intensity of the attacks.

Secondly, your other health issues. You are probably very run down if you are dealing with constant illnesses and infections. Do you have access to a women's health nurse through your GP or local hospital? If so, think about making an appointment. You can usually have a good long chat with someone who has heaps of information about health in general. best of all, they are usually free.

Thirdly, your job. I work in community health, but I don't really know what jobs the other members have - some are working, others studying and others are unable to work because of CH.

You say you aren't working at the moment and that you will need to go to Centrelink. If you need help then, yes, go to Centrelink. No one will begrudge someone who is sick from getting financial assistance. That is what they are there for. If you are struggling to find a job, why not think about studying. Perhaps you could study from home and get some qualifications. That way, when your CH is under control you will have heaps more options for work. Centrelink may also be able to help you out with the cost of your course, as well as paying you youth allowance while you are studying.

Finally, you sound "down" at the moment - do you have anyone to talk to, maybe your mum, a sister or good friend? Perhaps you can talk to your doctor about how you are feeling? You can also print off some of the information on this site to show your boyfriend.

We are always here as well. You can post anytime, or send a private message to someone.

Thinking of you

Posted in Our new home on 10 Apr, 2012 - 4:38 pm

Hi Barry
Great news and all the best to you and Mrs Coles. What part of Perth are you looking at? I lived in Wanneroo for a little while around 20 years ago. Beautiful place, great scenery.

Hope everything goes to plan for you both


Posted in Cutting Edge Treatments For Migraines on 06 Apr, 2012 - 12:10 pm

Hi all

This is an interesting article, well worth taking a look at - don't be put off by the epilepsy tag.

It talks about the use of a new type of implant into the cheek bone that controls headpain the same way as the the triptans but without the side effects - European studies have shown benefits in 59% of CH sufferers. Goadsby also chimes in talking about some new drugs in the pipeline for CH and chronic migraine as well as a bit on IV asprin.

It's also super recent, dated April 2012.

Good find Leslie


Posted in Comorbidity in Cluster Headache on 05 Apr, 2012 - 10:18 pm

Hi Chris
My BP goes up during a CH and stays elevated for an hour or so afterwards before dropping down to normal. Interestingly, the high BP plus the headpain once saw me investigated for having a stroke...

Posted in Maybe just maybe on 05 Apr, 2012 - 10:10 pm

Hi Deano

Glad your cycle is running to an end, and may you have many, many months pain free icon

Please check in with us from time to time. There's new and interesting info being posted all the time. Plus, your experiences may help someone else.


Posted in Comorbidity in Cluster Headache on 05 Apr, 2012 - 10:05 pm

Hi guys

I'm not real sure about a link between CH and a predisposition to mental illness.

Any chronic illness, especially one such as CH which causes a great deal of pain AND is largely misunderstood by society at large ("ye I get headaches like that, but I just pull myself together and get on with it....." etc etc) is bound to cause feelings of frustration, helplessness, why me?, what's wrong with me? etc which could trigger a depressive state.

Many years ago, a particular personality type was suggested as being link with CH -
Graham (1972) cited in Lance J & Goadsby P Mechanism and Management of Headache -suggested CH sufferers were "a hard drinking and hard smoking lot, ambitious and hard working, the prototype aggressive executive male type ... which conceals feelings of guilt, inadequacy and dependancy which shows itself in brief episodes of hysterical behaviour during a CH attack....". The same bloke also suggested a particular set of physical characteristics - apparantly we all look like lions!!!

Thankfully, numerous more recent studies have shown the above to be nothing but BS. CH suffers come from all different walks of life, with our personalities being as diverse and varied as our CH attacks.


Posted in 30th Anniversary of CH and Still going Strong! NOT HAPPY JAN! on 05 Apr, 2012 - 9:45 pm

Hi Pete

Yep only a CH sufferer knows what it's like to go to bed fearing you'll be woken in bloody agony


Posted in 30th Anniversary of CH and Still going Strong! NOT HAPPY JAN! on 05 Apr, 2012 - 7:04 pm

Hi Pete
Welcome, but sorry you had to come looking .... icon

I'm not an expert on CH medication but I believe dihydergot works as an abortive i.e works to stop an attack once it happens. Other approaches include swapping to / combining with a preventative medication - ie prevents / reduces likelihood of an attack. You could speak to your GP / neurologist about this.

Something else to consider is oxygen. Check out the tabs on the left to find more info about this. Another approach is a preventative routine involving magnesium, calcium and vitamin D3. More info on this here

All the best Pete


Posted in just for the sake of talking on 03 Apr, 2012 - 4:40 pm

Hi matt
Glad all is well so far

Posted in Back to Red on 29 Mar, 2012 - 4:39 pm

Hi Barry
Let's hope you break your 2 and a half year record this time!

Agree with the preservatives theory. I know it's only anecdotal but gathering information like this can only be helpful. Maybe it's another piece in this huge jigsaw we all want solved


Posted in Back to Red on 28 Mar, 2012 - 1:29 pm

Hi Ktulu
It's strange how when we're in cycle we become so sensitive to things that normally wouldn't bother us. When not in cycle, I really enjoy the odd "pizza and plonk" night with the girls, but there's no way I'd go within a sniff of such excesses during the dreaded change of season.
Another thing that I find interesting is the so called "rebound headache" phenomena. Why is it when you take analgesics for headaches, you can actually cause a headache but no where have I heard of headaches being a side effect of long term analgesic use for arthritis etc.

Posted in just for the sake of talking on 28 Mar, 2012 - 12:48 pm

It sounds like you have a good team behind you.
Thanks for sharing your implant journey with us and hoping for some good news from you next week

Posted in Back to Red on 28 Mar, 2012 - 11:43 am

Hi Barry
Yes, yes yes! I'm convinced the supplements are helping.
My diary shows 29 attacks over the 5 weeks. mainly 4's and 5's. Only two 7's. This is a huge improvement over how things were a couple of years ago.

Used no medication, only heat packs during the CH then took up your suggestion of going back to bed with a cold pack.

Switched to a different Mg because my usual one wasn't in stock. Now using an organic magnesium blend that has the D3 (1000mg) in with it. I take one about half an hour before bed each night.

Also have cut out all processed meats. Noticed last spring that attacks were worse after eating things like pizza, so started recording what I was eating in my HA diary. Saw a definate link between diet and severity of attack. I now avoid things like sausages, supermarket mince, ham, bacon etc as much as possible.

Am pretty sure a regular sleep / wake cycle helps as well.

How are things your way Barry - you seem to have been green for ages now


Posted in Back to Red on 28 Mar, 2012 - 8:16 am

Hi all
Am pleased to be able to report back to green after a week HA free. Surprisingly short cycle - only 5 weeks.
Thanks for all the support - I couldn't manage without you guys!


Posted in just for the sake of talking on 28 Mar, 2012 - 8:00 am

Hi Matt
Will keep you informed of my plans. Hope all goes well with your surgery - the days are counting down now. Fingers crossed.

Posted in just for the sake of talking on 20 Mar, 2012 - 5:47 pm

Hi Matt
I will be over that way late July / early August visiting my son - our paths may cross without us even knowing it!


Posted in just for the sake of talking on 20 Mar, 2012 - 6:44 am

Hi Matt

Glad some good things are happening. You deserve it.

When are you planning to go to the States?

Hope all goes well with your op


Posted in still here... on 15 Mar, 2012 - 9:44 pm

Hi Love peace

Try not to worry too much, stress will only make things worse.

Use your headache free days well. Visit your GP and organise scripts / medication so you can deal with the headaches as soon as they start.

Concentrate on your health, get rest well you can. Being in optimum health will help you cope better when / if the headaches come back.

Why not take the time to cook a few extra meals and throw them in the freezer. They may be helpful down the track.

Finally, remember to use the site. There's probably heaps more info here now, so take the time to check out the tabs along the left of the page.

We hope you don't need us, but someone will always be here if you do

Take care

Posted in BACK AGAIN on 13 Mar, 2012 - 5:20 pm

Hi Loagz
Welcome but sorry you had to come looking!

I think most people here will agree that one of the most difficult things to deal with when you have CH is the lack of knowledge most GPs have about the condition.

Heather is very right - it's essential to get informed - and there's stacks of info on this site that will help with that. If you find that your GP still isn't up to scratch with CH then by all means insist on a specialist (neurologist) referral.

As well as medication, there are other non-invasive methods of dealing with CH. Oxygen is one such method of managing the attacks and you'll find info on that to the left of the page.

Many people find "lifestyle' changes can help as well. Avoiding alcohol, watching your diet - especially cutting out processed meats that contain nitrates and setting a regular sleep / wake cycle can all make things that bit more manageable.

All the best

Posted in Public Service Notice on 12 Mar, 2012 - 6:30 am

haha very appropriate with St Patrick's day coming up!

Posted in Back to Red on 11 Mar, 2012 - 8:17 pm

Hi Heather

Not sure what the go is with the vomiting. Will see how I go.

Really running the gauntlet today - went on a bit of a road trip with one of my kids today and stopped at a country pub for a beer. Shadows intensified for a couple of hours but feeling okay now. Will see what tonight brings.

You've got to keep on living

Hi Red

I checked your diary before and see you've had a couple of good days. Hope it continues for you


Posted in Second Opinion on 11 Mar, 2012 - 11:54 am

Hi Ktulu

You are spot on with your comment that the IHS criteria needs revision.

I found an interesting article that compares CH symptoms between males and females - in it both phonophobia and photophobia are seen as common for both genders. it also compares CH symptoms with those of migraine.

This study (late 1990's) is much more recent than the one Lance and Goadsby quote in "Mechanism and Management of Headaches" (1966 - 1971 stuff)


Posted in Back to Red on 11 Mar, 2012 - 9:58 am

Hi guys

Thanks for the ice pack tip Barry, I used it last night and found it very soothing.
Still managing okay. Only 1 hit per night, a 6 or 7, lasting about an hour. Am vomiting every time though, which is something new for me.

Am shadowing pretty bad this morning, probably because I slept in. Sometimes I think we are our own worst enemies


Posted in Ultimate Price on 09 Mar, 2012 - 4:51 pm

Very sorry too Matt
Take care and all the best with the surgery

Posted in Have to admit it! on 09 Mar, 2012 - 6:54 am

Hi Heather

Just a quick post - have to get ready to go to earn a dollar

Hope you got throught the night without too much pain.

Have you tried hot towels to help with the pain? I use those new style fibre dishcloths - forgotten for the minute what they are called. But put them under the hot tap and sort of squeeze the water out as i fold them into a pad. Microfibre i think they are from the $2 shop. Anyway, they help me heaps.

What sort of pup have you got?

Cheers and good vibes your way

Posted in Back to Red on 06 Mar, 2012 - 7:03 pm

Hi Heather and thanks for the thoughts.

Not going too bad - an average of 1 daily, always during the night. Have doctor's appt later in the week to discuss oxygen. Sadly my GP of 15 years has retired and sold her practice. We now have a "medical centre" with three doctors, non of who speak English as their native language. I'll take some info in with me and see how I go.

Still battling the tiredness but am eating well etc and trying to go to bed / get up at same time each day.

Re America - my son moved there two years ago on a student visa to Kansas. I'm flying over late July for a couple of weeks while he is on summer vacation. I've been to the West coast before, but never the mid west so I have no idea what will await me - hopefully no tornadoes. Sam tells me he has planned our itinerary - I certainly won't be bored as there are a couple of "road trips" included ha ha.

Will let you know how I get on at the docs


Posted in Suffering alone in a Western Australian mining camp on 06 Mar, 2012 - 6:10 pm

Hello Andrew and welcome

I'm really glad you've found this site. Here you'll find an on-line community of ordinary people, just like yourself, who for some reason have / support someone with cluster headaches.

These guys - and they know who they are - can really make a difference. I know because they've helped me. Being able to seek worthwhile info and vent to people who know exactly what you are going through can make a huge difference.

I'm glad you've accessed oxygen and have a plan for if / when the beast hits tonight. I'm currently back in cycle and I too am being hit in the early hours of the morning. Only a fellow CH sufferer can ever know what it feels like to be exhausted yet scared to go to sleep, fearing the inevitable. That moment when the realisation of pain hits. You're barely conscious. Something's wrong, it's not a dream it's reality and you have no choice but to get up and deal with it.

Heather's right though, we have to take control and knowledge is power. I'm sure you'll take the time when you're home to talk with your GP / specialist. Check out some of the info on the site and get yourself a management plan. Use this site to float ideas and ask questions.

All the best Andrew for tonight, tomorrow and what ever the future brings


Posted in My Story - A Good News Story on 05 Mar, 2012 - 6:52 pm

Hey Justin

Great article

Hoping you stay pain free for ever


Posted in Back to Red on 03 Mar, 2012 - 12:13 pm

Hi Heather

Ah Claude Monet - wonderful artist. You have inspired me to save my pennies and go to Paris one day!! So pleased you had a wonderful and memorable time and love the snow angel. How great you were able to let your hair down and have fun fun fun.

Am hoping I may have come up with a solution for catching up on sleep - this morning (Saturday) I got up at usual time, had brekkie and did a few jobs, then went back to bed for a couple of hours. All good at the moment, feeling rested. Head feels "clear" - no shadows lurking to spoil the day.

Thanks Heather and Kim for the practical info re traveling with CH


Posted in Back to Red on 02 Mar, 2012 - 5:52 pm

Thanks Heather

I'm okay just very, very tired from having disturbed sleep. It's a catch 22 because if I try to "catch up" on sleep - ie afternoon naps or sleeping in on weekend then things get worse.

Still not using medication, just heat packs. Have GP appointment next week to discuss oxygen. Will let you know how I go.

How are you going and how was Europe? Please tell, I'm dying to hear of all the exciting things you got up to. Also interested in how the long haul flight and change in time zones impacted on your CH. I'm planning to fly over to the states in August to visit my son - and am a little bit concerned about managing should my CH be active at that time.

Thanks again for your thoughts

Posted in Ice Cream headache might help? on 02 Mar, 2012 - 5:40 pm

Ha Ha good on you Roger.

Seriously though, I'll try the icecube treatment over the weekend.


Posted in Second Opinion on 28 Feb, 2012 - 7:52 pm

Hi Red

Welcome to the site - but sorry you had to come looking.

It seems to me you have done the research and developed a sound understanding of some of the characteristics of cluster headache and the difference between cluster headache and migraine - that's a great starting point.

From the info you provide I agree you either need a second opinion from a GP and a referral to a neurologist. You know all this though; your challenge is to get yourself in the right mindset to deal with the situation without causing yourself anymore grief.

As you're no doubt aware, there's heaps of info available on this site. Maybe print some out to have with you when you next see a health professional.

Here's a link to an excellent book that can be downloaded (thanks Ben) - for some reason the link will need to be copied and pasted into yr browser.

Good luck with your search for answers, and please remember we're always here if you need to vent


Posted in Back to Red on 28 Feb, 2012 - 6:29 am

Thanks guys

Posted in Back to Red on 26 Feb, 2012 - 11:10 am

Hi guys

Just a quick note to say I'm back to red icon

Have had night time attacks for a week - increasing to 2 last night - but currently nothing thru the day. Pain level moderate, so we'll see how we go.

Take care

Posted in All Your Details on 12 Feb, 2012 - 8:30 am

Hi Matt
Good point, I'll take a look at my profile and see if it needs fixing iconicon

Sorry to hear things aren't going too well for you at home at the moment. I'm sure everyone is thinking of you at the moment and hoping that everything works out for you.

Also hoping all goes well with the implant procedure.

You're a brave man Matt, and a survivor. Your input into this site, even when things are tough, is really appreciated


Posted in Another new member on 07 Feb, 2012 - 7:54 pm

Hi Rob and welcome
So sorry to hear of the bs you are having to put up with from your GP, but sadly it doesn't seem to be unusual

All the best

Posted in Energy Drinks Oxygen & others on 02 Feb, 2012 - 9:47 pm

Hi Megan
Yes, it seems the title has dropped off Benny's Nerve Root Block thread. Perhaps one of the mods can reinstate it??
If you want to see the posts, either search for member "Benny" and read all, alternately search the forums for "Nerve Root Block"

Posted in Energy Drinks Oxygen & others on 02 Feb, 2012 - 6:04 pm

Hi Megan and welcome to you and Michael

It's a great idea to spend a few days familiarising yourself with the site and checking out the info available. As well as reading through the threads, the tabs to the left of the page will also, I'm sure, be of great benefit.

Can you fill us in on the injection that Michael had - it's difficult to comment without having all the info icon

The question you raise on altitude is interesting - I can't remember any discussion on that topic, but maybe others will chime in with their experiences.

Changes in sleep routine - whether more/less sleep or sleeping at different times of the day - certainly impacts on my CH. It's a difficult one, especially if you are waking through the night in pain and then trying to catch up by sleeping in / having afternoon naps...

As you are no doubt aware, the "cause" of CH is still unknown. What we do know though, is that the hypothalamus is somehow involved. One of the jobs of the hypothalamus is to manage the internal body clock or "circadian rhythm" - when we wake and when we want to eat etc.

The "cluster" nature of (episodic) CH - ie attacks occuring same time each day / night or at a particular time of the year indicates that somehow the internal body clock is involved in the disorder. Keeping to a regular sleep routine has beeen shown to help reset a wonky body clock, as has making simple changes like ensuring the bedroom is as dark as possible. These measures alone are certainly not going to "fix" the problem, but they may certainly be a set in the right direction.

Re the Ride for Awareness - here's the link to the original post:


Posted in Book anyone? on 01 Feb, 2012 - 1:38 pm

Hi Ben
What a find!! This one's currently selling for $200 on ebay

Posted in Occipital Nerve Stimulation on 01 Feb, 2012 - 12:49 pm

Hi all
Here's another recent article on advances in neuroimaging for TACs and in particular CH for those who are interested[/L

Perhaps we are moving closer to the holy grail of knowing exactly what causes CH

We live in hope

Posted in Energy Drinks Oxygen & others on 28 Jan, 2012 - 3:00 pm

Hi Dave and everybody

Re the taurine, I take a quarter of a teaspoon sprinkled over cereal, yoghurt etc with breakie.

I've been doing a bit of net surfing re taurine, caffeine and circadian rhythm and found a couple of interesting points -

Firstly, (it seems) that taurine is used by the pineal gland to aid in the uptake of melatonin

Secondly, caffeine (by indirectly increasing noradrenalin) actually "turbo charges" the uptake of taurine

I wouldn't mind looking into this a bit more because the sources citing this info weren't particularly strong, but it could be of interest to those trying to manage their CH by supplements etc

Barry - I'm interested in your thoughts here???


Posted in UK based Film-Maker seeks CHers for Documentary on 28 Jan, 2012 - 2:04 pm


Here's a thought from my teaching days:

"Talent = above average knowledge + passion + creativity"

Go for it ..

Posted in UK based Film-Maker seeks CHers for Documentary on 28 Jan, 2012 - 1:18 pm

Hi Ben

Where do you find this stuff?? Brilliant.

Never mind Charlie Southall and his UK documentary, why not look at making one yourself and airing it on the Community TV channels here in Australia?

Just a thought

Posted in Energy Drinks Oxygen & others on 27 Jan, 2012 - 4:53 pm

Hi all
Re taurine - available from any health food shop. I have Musashi brand (nestle), 1000mg/gram ie pure.
Fine, white crystaline, tasteless. Cost under $20 for 75g

Posted in Rebound Headaches on 17 Jan, 2012 - 10:07 pm


Absolutely no need to apologise.

Your statement "It looks like there is an important clinical separation between the two headache conditions." had me back at the keyboard, searching away, and yes there is a distinction and yes, I now have a much better understanding of the two.

Again, something gained from your input.


Posted in Rebound Headaches on 16 Jan, 2012 - 6:38 pm

Ben !! Welcome back !!

This is super interesting info. I've read the above and also revisited your earlier posts on glial cells - it took me a bit to get my head around it, but wow! I understand your excitment.

I'm just a bit confused with the trial part though - the info said the trial would be completed by December 2011, yet the article was dated October 2011 and said "recruiting now" ???

You hint at the fact that you've been flamed over your faith in Dr Rolan??? Don't be so hard on us Ben - people, by nature, tend to resist change. Lifestyle changes, behaviour changes, thought changes etc can all be overwhelming when added to the complexities of daily life, especially when one is dealing with an on going medical problem.

And yes, Howard Florey was the penicillin dude from Adelaide.


Posted in Steroids on 16 Jan, 2012 - 12:48 pm

Hi Katy
We had a bit of a discussion on prednisone a while back. This link will take you to the thread. From there you can link to further info if you like.

Sorry you are being hit really bad right now icon


Posted in Rebound Headaches on 15 Jan, 2012 - 8:56 pm

Hi Edam
You're right, this site is a godsend. If you go to the home page and scroll down the bottom to "About the Site" you'll read about Roger, a CH sufferer and IT whizz who set everything up in the first place. Thanks Roger!!!!

You can post the info re your grandfather in the prognosis thread. If it's not right, one of the moderators will fix it. They're good at that icon

Again, all the best

Posted in Rebound Headaches on 15 Jan, 2012 - 4:04 pm

Hi AlphaEcho

Welcome but sorry you have to be here.....

I'm so pleased the info on the site provided a starting point for you and your GP to arrive
at a diagnosis. There's heaps of info to the left and top of the page that's really useful, including an info sheet you can give to interested people and a diary to record how things are going for you.

You seem to be exploring lots of options for management - hopefully you'll find something that works for you. One of our members, Barry, has also posted info re a supplement based program that may also be worth trying. I've posted a link to the thread in case you haven't come across it as of yet.

I'm also interested in your statement in your profile that your grandfather had CH until his 60's, but no longer suffers. We've recently had a bit of a debate re long term prognosis so anything you can add to that re your grandfather's situation would be really appreciated.[

Thanks for the info re the aspirin/caffeine combination.Being a bit ignorant on the medication side of things I googled acetaminophen and found it to be simply paracetamol!!

Hope all goes well with your push for an early neuro appointment


Posted in I'm new here on 15 Jan, 2012 - 12:24 pm

Hi David
I have to agree with Barry that you are certainly describing classic symptoms of CH.
The residual pain you describe could be what we call as "shadows" or "shadowing". Some people find these precede an attack, while others have them on and off throughout the whole CH bout or episode.

Assuming you do indeed have CH, you will quickly learn to differentiate between the shadows and the onset of a classic CH. I find the shadows are more dull in nature, where as the onset of a CH has a stabbing or piercing element.

I find shadows can often be managed by getting out in the fresh air or sitting in front of the air con (the car is especially effective for this), maybe massaging a small amounts of Vicks into the affected area and just sitting up straight and breathing deeply. A couple of panadol might also work for you. I use panadol for shadows and aspirin at the onset of a CH (see below) - otherwise I find the aspirin not as affective, also at the height of a cycle I'd probably be exceeding the daily quota for the stuff. Others probably have different techniques.

The nurofen zavance is a good idea, as is the red bull, alternately 3 aspro clear in half a glass of warm water at the onset of an attack works for some. It has to be the "fizzy" aspro for best results. A word of caution though on combining caffeine and asprin - it seems the combination in high doses can cause rebound headaches for some.[

I see you have posted extensively on the use of O2 in another thread. Valuable information indeed and I'm sure Barry (he's a dedicated O2 user) will no doubt chime in on the debate.

Please remember David, the info we post is simply how we see it. It doesn't take the place of professional medical advice.

All the best

Posted in Rebound Headaches on 13 Jan, 2012 - 10:13 pm

Hi all,
I was doing a bit of net searching and came across an article on "Analgesic Rebound" headaches.

The article's too large to paste, so here's a bit of a synopsis.

It was written by a Dr Robbins, described as on of the top 10 experts in the country (US)on management of headache medications (whatever that means) and presents a case study of a young man, aged 23, with a history of "severe daily headaches and frequent migraines" from the age of 5, who has had little success in managing his headaches using a range of medications, many of which will no doubt be familiar to CH sufferers here on this site.

The patient in the case study is currently taking "12 to 14 pills per day of an aspirin and caffeine combination" - I'm not sure what they would be (Ben, we need you here) - but it seems that in this young man's case the supposed cure is actually part of the problem.

Admittedly, no where in the article is the term "cluster headache" mentioned, and the medication causing the problem may not be something used for the management of cluster headache, but it's still an interesting read.


Posted in I'm new here on 13 Jan, 2012 - 9:43 pm

Hi David


Yes, definitely get yourself to a doctor - as you are no doubt aware all unexplained / unusual headaches need medical investigation.

Sadly, cluster headaches are something many GPs are not conversant with. If you read through some of the posts and member profiles on the forum, you'll see some of us wait years before diagnosis. Have a look through some of the links to the top and to the left of the page and print off some of the info to show your GP if necessary.

As you say "self diagnosis can be fraught with dangers", can I also suggest that so can self medication with heavy duty opioids such as endone - they are unlikely to work for CH anyway, due to the time it takes for them to "kick in". If you do have CH and decide to go down the medication route, there are other medications that can work as either a preventative or an abortive that will (hopefully) be far more effective, as well as the O2 that you have already tried.

If medication is not for you, then Barry Coles has posted info regarding a supplement based anti-inflammatory regime that seems very promising. This is the way I have decided to go.

Re your question of how CH "usually" starts - I honestly can't remember but no doubt other members will be able to provide their perspective for you.

First things first, though David. Get your self to a GP and seek a diagnosis.

Best of luck with everything and let us know how you get on


Posted in CH Going away Signs on 13 Jan, 2012 - 7:15 pm

Hi Laksh
I usually find that the headaches become less frequent over a period of time. I'll wake up and think "wow, no headache last night" and they generally just stop over a period of about ten days.

Some members have reported feeling a "pop" or clearing of the head? I don't notice this, so can't give you any more info.

Are you thinking that your cycle may be coming to an end?? Is so, fingers (and toes) crossed for you.

All the best

Posted in Passed my use by date. on 13 Jan, 2012 - 6:52 pm

Hi Ben

Increased knowledge and robust debate are never passed their use by date!!

By all means take a break Ben. You cannot help others if you don't look after yourself first and you have much to consider with the possibility of an inplant in the near future.

As Peter said, please hang around. You WILL beat this thing one day. I'm sure i speak for everyone when I say we want to see you "turn green" so we can celebrate along with you.

Personally, I have learned much from the information you have shared and I thank you for that opportunity.

Best wishes and kindest regards with whatever you decide to do


Posted in New to site on 12 Jan, 2012 - 9:46 pm

Hi katy
Welcome to the site, but sorry you had to come looking...

I'm pleased you managed to get a quick diagnosis, as many of us have to wait years before being given a name for "our headaches".

You mention you have trouble taking oral medication. Are you still seeing the same GP and have you been referred to a neurologist? Perhaps you can be prescribed something to stop the vomiting.

Take the time to check out the links on the left. There's heaps of useful info there. The link to oxygen (O2) treatment might be helpful, especially with you having trouble tolerating the oral medication.

You can also set up your own headache diary to record frequency, intensity and any triggers etc. This might be useful for you. The link for that is at the top right of the page.

All the best for now


Posted in on 08 Jan, 2012 - 8:59 am

Hi Kim
Great news indeed. Enjoy your pain free time.

You state this was the most severe bout in over 30 years - do you have any idea what might have been the reason for that? All these little pieces of information may play a part in filling together the jigsaw that will provide us with the answers we need.


Posted in Ride for Awareness on 07 Jan, 2012 - 6:48 pm

Hi Matt
I'm happy to help with any sponsorship letters. Let me know if there's anything I can do to help


Posted in An alternative anyone on 30 Dec, 2011 - 4:18 pm

Hi Barry and everyone

Thanks for posting the info re Batch's CH prevention regime. I have been following something similar for a little over twelve months with real success. CH cycles have been shorter, fewer heaches and less pain.

Give it some thought guys


Posted in Untitled on 28 Dec, 2011 - 8:39 am

Thanks Matt and Heather for your kind words.
Great news - Sam has just emailed to say he's allowed home today. Diagnosis was acute pericarditis. In one way he was fortunate that he became sick on a long haul flight because the major concern was that he had developed a blood clot. This got him straight into the ICU and under the care of a specialist.

Woke again in the early hours with a "headache" - I'm not going to label it CH at this stage!! The pain eased a little with a heat pack, then I jumped back into bed with the fan on high and chose to ignore the whole thing. Have some shadowing this morning, nothing major.

I really appreciate the support and kindness showed by everyone who contributes to this site. People are always willing to offer kind words, no matter how much they are suffering themselves. Just knowing you guys are here to offer information and support makes such a difference.

Heather, I hope you snagged a few bargains while out shopping

Kind thoughts to everyone

Posted in Untitled on 28 Dec, 2011 - 8:13 am

Hi guys,
Glad you have had relief with these two products - I'll put them on my shopping list.
I've had limited success rubbing a small amount of vicks on my temple, especially for day time CH, if I start rubbing the stuff in as soon as I feel a twinge, but there's no way vicks would shift a serious attack.
All the best for the New year

Posted in Untitled on 27 Dec, 2011 - 2:20 pm

Hi guys
Was woken at 1.30 this morning with a headache - first one in a couple of months. Not really painful, only about a 5. More scary than anything 'cos I really really don't want to be going back into cycle. Have brought my New Year's resolutions of no alcohol, no caffeine and more routine sleep / wake cycle forward in the hope that last night is only going to be a one off!!!

Could have been stress though - my son flew back to Kansas City on Chrissie Eve, was taken off flight straight to ICU with chest pain and breathing difficulties. Still in hospital. Fortunately ??? only a virus attacking the heart and unlikely to be any lasting damage (only to my credit card). Feel for Sam though - the 25th wasn't only Christmas Day, it was his 21st birthday.

So here's hoping for good health and painfree times to all for 2012 and beyond


Posted in Untitled on 26 Dec, 2011 - 1:44 pm

No Ben, I didn't "pinch" your link - I'll leave that to others lol

Posted in Untitled on 26 Dec, 2011 - 12:29 pm

Hi Ben
I did a bit of internet searching re nitroglycerin and CH but most of what I found was at least 20 years old, or was citing stuff this old.

I did, however, found one article that may be of interest

"During a cluster headache episode and in chronic cluster headache patients, cluster headache attacks can often but not always be triggered by histamine or by nitroglycerin.[1] Drinking alcohol triggers attacks in about half of the patients, red wine in 70%.[2] Triggers seldom have an influence on the start of a new cluster headache episode. Some heart medications for example can induce cluster headache episodes.[3]"

The references are -
1.↑ Sances G, Tassorelli C, Pucci E, Ghiotto N, Sandrini G, Nappi G.: Reliability of the nitroglycerin provocative test in the diagnosis of neurovascular headaches. Cephalalgia. 2004 Feb; 24(2): 110-9. PMID 14728706, DOI.
2.↑ Schürks M, Kurth T, de Jesus J, Jonjic M, Rosskopf D, Diener HC.: Cluster headache: clinical presentation, lifestyle features, and medical treatment. Headache. 2006 Sep; 46(8): 1246-54. PMID 16942468, DOI.
3.↑ Ekbom K, Sjöstrand C, Svensson DA, Waldenlind E.: Periods of cluster headache induced by nitrate therapy and spontaneous remission of angina pectoris during active clusters. Cephalalgia. 2004 Feb;24(2): 92-8. PMID 14728704 DOI.

So in a nutshell, nitroglycerin as a trigger is not 100% guaranteed, and the patient needs to be in cycle at the time - which may not be the news you're looking for.

Whatever path you take ben, I hope all goes well for you


Posted in Untitled on 22 Dec, 2011 - 4:39 pm

The kids and I celebrated chrissie last night because we will be scattered near and far on the actual day. I'll head out to my mum's for a traditional Christmas dinner - it's the one part of her English heritage she holds onto with tenacity. She's also a great cook so it's very easy to overeat.

On a more personal note, this time last year was the start of some pretty horrific weather in this part of the country. Dalby itself was inundated five times in three weeks and the near by areas of Toowoomba and the Lockyer Valley suffered huge loss of life from major flash flooding, so there will also be a place in my heart for those who lost so much.


Posted in Don't Let The Beast Rule Your Life on 20 Dec, 2011 - 3:03 pm

Great news kerri, and how true, this really is a fabulous resource.
Thanks for the christmas wishes, and same to you and yours

Posted in Ride for Awareness on 19 Dec, 2011 - 2:23 pm

I'm willing to help with the catering / cooking etc - whatever is needed.
Will need dates though, cos I'll have to put in for annual leave

Nice Christmas message from Roger!


Posted in No Brainer... on 16 Dec, 2011 - 10:30 pm

Other option might be disprin direct - if you just dissolve them under yr tongue

Posted in No Brainer... on 16 Dec, 2011 - 10:14 pm

Hey Ben
I'm pretty sure u can get nurofen suppositories - no seriously - might be worth thinking about

Posted in restles leg syndrome on 09 Dec, 2011 - 6:30 am

Hi guys
The leg kicking at night could be periodic leg movement disorder. I suffer from this from time to time. It is apparantly related to circadian rhythm disorder. Have a look at this wiki entry for sleep disorders and it is listed there.


Posted in restles leg syndrome on 02 Dec, 2011 - 9:56 pm

Hi Les and welcome to the site.

Re yr question on a CH and RLS, it seems that the latest research is actually disputing a link

The wiki site was also an interesting read. I always believed that RLS referred to those annoying involuntary leg movements just as you were falling asleep, a bit like kicking out at something - however this seems to be a misconception, as the condition is described as "an itching or tickling in the limbs".

I also found a number of references to RLS and magnesium deficiency, which is interesting because there is some anecdotal evidence that magnesium supplementation can play a part in managing CH

In a nutshell Les, it seems to be another one of those issues where a search for answers only provides more questions...


Posted in Untitled on 29 Nov, 2011 - 7:15 am

Love the idea of a get together, Matt.

Stay strong, our thoughts are with you


Posted in I think this bloke has the answers to our CH on 29 Nov, 2011 - 7:13 am

I'd be interested in finding out more about how chemical exposure can cause Parkinson's disease, since Parkinson's is also a malfunctioning of the hypothalmus

Posted in Are they cluster headaches? Who can diagnose me properly? on 07 Nov, 2011 - 6:51 pm

Hi again
Sad to hear you've had no luck with a quick neuro appt - definately try one of the other neuros or the pain management clinic - sometimes I think that knowing you have an appointment in the near future can be a big help.

I agree that heat / humidity seems to make things worse - I sleep with one of those box fans on my bed side table and the window open. I find the "white noise" from the fan quite soothing and it helps the air circulate.

I've never tried the middle of the night hospital trip, but I gather from what others have posted that it's a waste of time. With a "simple headache' you are probably triaged as low priority, and by the time you see the medic the attack is over or you're that worked up they think you're a junkie after a fix... Sorry, but that's the way it seems to be.

One other idea (assuming you are dealing with CH) - are you currently exercising alot? If you are hitting the gym can I suggest you stop for the duration of the episode. For some reason heavy exercise (not just walking etc) seems to make things worse. Also, look at your diet - focus more on fruit / veg and keep protein to one or two serves a day - this may help reduce the severity of attacks. Another tip that works for me is to take a Ural sachet each morning and night for a week or so and see if that makes any difference. One theory is that these measures help make the body more alkaline (ie raise body pH) which seems to work as a protective measure - won't stop the attacks altogether but may help with reducing severity and intensity.

Only another person with CH can understand the fear of going to bed each night. It's not a good place to be but putting off sleeping doesn't help. It's important to keep to a regular sleep / wake cycle, even on weekends try not to sleep in for more than an hour. There's heaps of evidence that disturbances to the body's circadian rhythm is a contributing cause.

All the best Tara with this battle - keep informed, read the links to the left and search the posts for info that may help. As we say, "knowledge is power".


Posted in Are they cluster headaches? Who can diagnose me properly? on 07 Nov, 2011 - 5:33 pm

Hi Tara and welcome
Hope you get into the neuro shortly, and hope he has answers for you.
Just a hint re the ice packs you mention. I find that filling 3 or 4 sandwich size snaplock bags with frozen peas works heaps more effectively than a more solid sort of ice pack. You can keep the bags in the freezer, and if you wrap them in a damp cloth (maybe a chux or something similar) they are a bit more comfortable to use. You can just throw the bags back in the freezer and re-use as needed.

I also find heat helpful. I wet a tea towel and fold into a pad shape, then zap in the microwave for about 45 seconds before holding over my temple - be careful though, as it can get very hot. As the tea towel cools, I refold so what was on the inside is on the outside, that way I get a good 5 or so minutes before I have to re-do.

Sometimes a hot pack on the temple and an ice pack on the back of my neck is helpful too. A friend of mine who's a nurse once suggested using the heat pack on the head and sticking your feet in a bucket of icy water - it's supposed to draw the excess blood away from the head but I must admit I haven't been game to try!

Hi to Heather as well - great to hear from you and hope things are going as well as they can


Posted in Untitled on 05 Nov, 2011 - 3:19 pm

Hi Guys
Just a comment re dietary changes - eating as Peter suggests causes the body Ph to rise (ie the body becomes more alkaline) - which I reckon can help reduce both the frequency and intensity of attacks - Barry has posted some great info on the subject and it's well worth taking a look at.

Posted in calling female cluster headache sufferers on 05 Nov, 2011 - 3:10 pm

Hi Penny and thanks for the info

I have no experience with CH and pregnancy - I'm 47 and only had CH for the last 5 years.

If you're interested in other members' experiences with CH during pregnancy, click on "Forums List" at the top lhs of the page, then you can search for posts containing the words pregnancy / pregnant etc.


Posted in calling female cluster headache sufferers on 03 Nov, 2011 - 6:38 pm

Hi Penny,
Welcome and thanks for sharing your experience and info.

Just a couple of questions - is the long term use of progesterone likely to increase the risk of breast cancer and / or blood clots, especially in post menopausal women?

Secondly, do you mind if I copy your post to show my GP?


Posted in Time to "fess" up on 12 Oct, 2011 - 8:21 pm

Hi Barry
I hope you're not insinuating that our beloved Heather resembles the lady in the pic

Posted in Time to "fess" up on 09 Oct, 2011 - 10:28 am

Hi Heather

What can I say - I logged on today to change my status to green and saw you were now red..

You certainly won't go wrong in heeding your own words - you have provided me, and many others I'm sure, with stacks of info and bucket loads of commonsense.

Heather, have you considered trying the supplement / vitamin routine Barry posted in his topic "worth a look" - I started a similar routine approx 12 months ago, and although I've had three CH cycles since then, they've been heaps easier no manage. No meds other than aspro clear as Ben suggested and hot / cold packs. Cycle length reduced from 10 weeks to 4-5 weeks; intensity, duration and frequency of CH also reduced.

Do what you need Heather to get through - stay away or rant and rave to your hearts content. We all understand where you're at.

Look after yourself, stay positive and here's hoping we see you green before too much longer.


Posted in just how far can you go on 08 Oct, 2011 - 10:13 am

Hi Alex

Wonderful, wonderful news!

Thank you for being so honest - we all know the value of keeping up with medication routines, staying within a set sleep / wake cycle and avoiding triggers, but yes, it's hard.

It's hard for me, as a 47 year old mum of three boys around your age; it must be especially hard for you - at 21 - at what should be the best years of your life for the intelligent and determined young man as you have shown yourself to be.

One suggestion (and forgive me if I'm overstepping the mark - you haven't asked for any advice) - but why not print a copy of what you have just posted. Frame one copy and keep it on the wall, keep another copy in your wallet or glove box. Use them as a reminder of the message you have just shared to help keep you motivated to do the "right thing".

Enjoy your pain free time, you deserve it!


Posted in just how far can you go on 28 Sep, 2011 - 6:52 pm

Hey Alex
All the very, very best for Monday and the days beyond

Posted in Untitled on 28 Sep, 2011 - 1:05 pm

Hi all

I reckon we just call 'em "Suicide Headaches" - it's simple, descriptive and an attention grabber.

A while ago I posted one of my workmates had mentioned his brother has CH - he was talking to someone else at the time and stated that "the headaches are so bad they call them suicide headaches". That not only got my attention, but everyone else's in the room as well...

Cheers to all and special thoughts to those who are suffering so cruelly at the moment


Posted in on 24 Sep, 2011 - 1:21 pm

Hi Barry and everyone

Thanks for the update.

I'm convinced this info from Batch is worth taking seriously - I have been following a similar routine as Batch indicates for about 10 months, and have noticed a definite decrease in attack intensity. This time last year I was a bl**dy mess from my spring cycle and needed three weeks off work - this time only 12 attacks over 16 days, mainly 4's and 5's.

My regime is:
1 ural sachet daily (for raising body pH), 2 x magnesium oratate 750mg daily,1 vitamin D3 1000 IU daily + a vitamin B supplement. I take the magnesium at night, the rest in the morning.

I've also made my bedroom as dark as possible and got rid of the clock radio with its annoying red light - which is probably having a positive effect on my circadian rhythm. I'm sleeping better anyway!

These changes may not have "fixed" the problem, but hey, things are certainly getting any worse.

Just a note of caution with the vitamin / mineral regime - the usual advice of checking with your doctor still applies. These supplements may be available OTC but can still be contr-indicated for some people depending on other medication etc. The ural is also fairly high in sodium at around 700mg per sachet, so may not be suitable for everyone.


Posted in Recent Research on Hypothalmic Involvement on 17 Sep, 2011 - 10:15 am

Hi all,

Yes, Peter I agree - it seems very bold to simply write of the association between CH and the hypothalmus simply because the REM sleep link couldn't be proved.

I also found another piece of new research that shows no link between REM sleep and migraine if anyone's interested.

So just more questions. I guess our only hope is that one day all these little pieces of research fit together and provide us with the answers we're looking for!


Posted in Anyone else's CH go to eleven? on 17 Sep, 2011 - 9:47 am

Hi Ben and everyone
Glad you are okay Ben, and you pose a couple of interesting questions.
Firstly, I use the KIP scale as it works for me - like Heather, I have never rated my pain above an 8. In a funny sort of way, I get comfort in believing it could be worse.."breathe..others suffer more than me ..'ll be gone in an hour.." etc". I've never actually hit the floor due to CH pain, but I've become dizzy, felt like I'm falling and vomited everywhere. Not nice.

The one shortfall I can see with the KIP scale is that it doesn't rate duration and frequency. If I'm woken three times thru the night with CH then chances are the third time I'm pretty close to hysterical, regardless of the pain.

On the other question of rating other pain, my belief is we need to rate as a non CH sufferer would - simply because telling the medics I'm only at a 5 may result in a wrong diagnosis or lack of further investigation.

On another note, after daily attacks for the last week and a half I have sadly switched my status to red. So far not too bad - fingers and toes crossed.

And yes Heather, you do make sense and hope all is on the mend with you


Posted in Recent Research on Hypothalmic Involvement on 14 Sep, 2011 - 9:21 am

Hi all
As I usually suffer CH thru the night, I thought I'd have a bit of a net search of "CH and sleep disorders" to see if I could find anything of interest.

Found this abstract, which I've copied in its entirety - the most interesting thing is in the conclusion - that no link was found between hypothalmic disfunction and CH!!

"Sleep disorders
Tuesday, May 31, 2011, 10:15 - 10:30
Serial polysomnography in cluster headache shows no association with REM sleep
M. Obermann, D. Holle, S. Naegel, T. Wessendorf, S. Zaremba, H.C. Diener, Z. Katsarava (Essen, DE)

Objective: To identify associations of REM sleep with the occurrence of headache in patients with cluster headache.
Background: Cluster headache is a rare primary headache disorder often related to sleep. Many patients experience cluster headache attacks at night lasting between 15 min and several hours. The suspected relationship of hypothalamic dysfunction in the pathophysiology of cluster headache has often raised the suspicion that typical headache attacks might be related to REM sleep. This would underline hypothalamic involvement in this disease.
Design/ Methods: We performed polysomnography in 4 patients with cluster headache according to the diagnostic criteria of the International Headache Society (ICHD-II) in four consecutive nights. An independent, experienced sleep medicine specialist blinded to the diagnosis evaluated a total of 14 nights where typical headache occurred.
Results: We found no association of the occurrence of headache in patients with cluster headache with a particular sleep phase. Headache onset was arbitrarily distributed to REM and Non-REM sleep. Headache occurred most often in sleep phase 2, which also is the most likely finding as this is the most common sleep phase.
Conclusion/ Relevance: The occurrence of cluster headache attacks is not associated with a particular sleep phase, neither REM nor Non-REM sleep. These findings dispute the common understanding that hypothalamic dysfunction is the hallmark of cluster headache pathophysiology."

Anyway, for those interested in the research side, it's something to think about


Posted in Let the fun begin!! on 06 Sep, 2011 - 8:05 pm

Hi Bobby,

Welcome to the site, but sorry you have to be here!
Like you, I have just started another episode, with three attacks over the last couple of days. My pain has been quite manageable too, which like you, is how things start. Unfortunately my remission has only been for 10 weeks and my spring attacks are usually the worst, lasting well into November - which is a bit miserable.

Hope you "went ok" with your GP visit - let us know if anything positive came from it. Gathering as much info as possible is definately the way to go, and there's certainly heaps available here!

On another note, the most remarkable coincidence has happened - over the last couple of weeks, 2 of my workmates have spoken to me of their experiences with CH. One staff member has a brother in law with CH and another staff member told me today that her daughter's "migraines" had just been re-diagnosed as CH!!

Anyway, cheers for now

Posted in Thank you. on 31 Aug, 2011 - 3:16 pm

Hi Ben

Firstly, glad to hear your mum is on the mend.

I checked out the three links you posted above and had no problems accessing.

I also did a quick search for clinical trial data for imigram / sumatriptan and found this -

I haven't opened any of the links - there's 69 in all - but you might find something of interest in there


Posted in CH, ADH4 Gene and Kudzu on 25 Aug, 2011 - 5:20 pm

Hi everyone
Just wondering if anyone has heard of / tried kudzu as a teatment for CH?

I've been having a bit of a squizz at some of the info out there in cyber space and found kudzu mentioned in wikipedia -

Further research on kudzu shows it's a plant extract, used by the Chinese for many years to "treat" alcoholism.

Admittedly, this fact alone doesn't mean much but another article I found suggests a link between the ADH4 gene and CH, with the ADH4 gene having something to do with how we metabolise alcohol.

The active ingredient in kudzu is an isoflavin called puerarin, which is supposed to increase blood flow to the heart and brain -

It's all a lot to digest, I know, but the alcohol / ADH4 gene thing does seem to link the two.

Anyway, I'd be interested to know of anyone's thoughts on the matter or experience with kudzu.

Cheers for now

Posted in CH gets a mention in mainstream media at last! on 16 Aug, 2011 - 4:49 pm

Thanks for the link Ben. My kids and I listened while I was cooking tea last night.It was great for them to hear an account of CH from someone the same gender and age as themselves - it gave them a new insight into mum's "headaches"

Posted in Circadian Solstice??? on 26 Jul, 2011 - 5:34 pm

Hi all,
Just wanting to share a link to a UK site focussing on circadian rhythm imbalance, seasonal adjustment disorder and light therapy - it isn't at all scientific, but everything on there seems to "check out" with the other info that's around. It's also easy to read and may be a great starting point for anyone interested in following the idea up further.

Sorry to hear Ben that your reprieve was so short - I may not post often, but check the site most days and really appreciate the info and ideas you share.


Posted in Circadian Solstice??? on 04 Jul, 2011 - 5:27 pm

Hi Again,
Firstly Peter - no "pop" or other significant event - just woke up at 5am one morning and thought wow - have slept all night, no headache!! After two nights sleeping through I became cautiously optimistic and now nothing for 9 days. This was a relatively short cycle - 23 days, but as I've never had a winter cycle before I have nothing to compare it with.

Re Ben's comment noting the equinox, yes my cycles previously have been autumn / spring, very cyclic, starting either early March or early September and lasting around 9 weeks.

To add to the info provided by Ben above, I'm sure I read somewhere that CH is more prevalent the further away one is from the equator - could be interesting because as latitude increases so does the difference between the amount of daylight on each of the solstices. At the time I started to compile a list of different countries and the prevalance of CH to see if this really was the case. I will see if I can dig these stats out to see if there is anything of interest in them.

I also had a bit of a look at our member stats on a state by state basis to see if there is anything of interest there -
Qld 241 members / population 4.5m - 1 in every 18 672 Qlders is a member
NSW 313 members / population 7.3m - 1 in every 23 322 a member
Vic 212 members / population 5.5m - 1 in every 19 573 a member
SA 69 members / population 1.7m - 1 in every 24 638 a member

so in a nutshell - nothing there to support the theory!!!

Agree it's an interesting subject

Posted in Circadian Solstice??? on 02 Jul, 2011 - 12:33 pm

Cycle over - headache free for 8 days now. Sudden end, no tapering and coincided with end of the cold weather. Yes, I know I'm in Queensland but we had a run of cold weather - mornings dropping as low as -5. End of cycle could also have coincided with solstice - who knows?


Posted in Circadian Solstice??? on 22 Jun, 2011 - 9:24 pm

Hi Everyone
I came back into cycle the start of the month - very strange as I have never had a winter cycle before. CH cycle for me has always been spring and autumn. I was thinking the weather might have had something to do with this as winter hit here unusually hard and sudden about the time the headaches flared up.
On a positive note (if there is a positive) headaches are only at night and only reaching a 5, so I'm hopeful I'll travel okay ...


Posted in Untitled on 23 Mar, 2011 - 9:31 am

Hi DDay2
Just caught your post and am feeling your pain too. It's a strange beast we do battle with - I'm currently 6 weeks into cycle, cycles strike twice a year and usually last around 10 weeks.

Now I don't know much about about CH, but I'm learning - and knowledge is power. This site contains a stack of info - so take the time to read what you can and learn.

Keep a headache diary as well, and note down the foods you eat - the whole CH thing is far more complex than a simple food intolerance, but you might notice a link between a particular food and the really bad headaches. For me, a possible trigger is processed meats in takeaway - if I eat Maccas or pizza during a cycle, I can guarantee I'll be up 3 times during the night doing battle with a force 7 - 8 each time. Stay off those foods, and I may be up once or even twice, but it'll only be a 5. Much more manageable.

Use the time between cycles to preapare for the next one - not easy I know, because CH is probably the last thing you want to think about when you're not suffering. See your doctor and talk about possible medications etc, that way when the beast returns you have a plan of attack.

All the best

Posted in Untitled on 18 Mar, 2011 - 4:49 pm

Hi Bluesphere
Welcome to the site and I encourage you to take the time to "read further" as you say - you'll find heaps of info from others who can relate clearly to how you're feeling, as well as links to some great professional information.

Hope all goes well with your doctor's visit - you didn't say whether you were seeing a GP or a specialist.

Let us know how you get on


Posted in Untitled on 10 Mar, 2011 - 6:02 pm

Hi jennievans

Welcome to the site and so sorry to hear you are hurting so much.

Unsympathetic doctors seem to be the norm where CH is concerned - they just don't get it, and I think that many people here will have the same story.

Firstly, can I suggest you get a referral to a neurologist and get an exact diagnosis - then you know what you are dealing with. If your GP won't come to the party, then find another one who will. In the meantime, start a headache diary and record things like duration, level of pain, type of pain and any possible triggers etc - there is an excellent one on this site that you can copy and paste onto a word document to take with you to the doctor.

Secondly, although the exact cause of CH is unknown, alcohol seems to be a trigger for many - so avoid, avoid, avoid.

Thirdly, until your doctor takes you seriously, you are unlikely to be prescribed any effective medication. Cluster headaches come on very rapidly and oral analgesics simply take too long to work to be effective. In the meantime, try 3 aspro clear in half a glass of water at the first signs of attack - several members have found this effective, but it must be aspro clear - the fizzy type. Hot and / or cold packs can also provide some (admittedly not much) relief.

And finally, use this site for support and to gather as much information as you can. Everyone here either suffers from CH, or cares about someone who does.

Cheers and good luck

Posted in Untitled on 06 Mar, 2011 - 12:46 pm

Hi Ben
You raise many interesting questions - and a quick search of "cluster headaches and melatonin" reveals heaps of info - particularly from the US where melatonin is (I believe) available without prescription. Here's one as a starting point -

Barry also raises interesting questions with his post "something worth taking a look at" in which he suggests the merit of vitamin D3. Since melatonin and D3 both have something to do with sunlight, I googled "melatonin and D3" and came up with another point to ponder -

The following site contains a paragraph which explores the link between vitamin D3 deficiency and depression, in particularly SAD - so a discussion with your specialist re the benefits of D3 supplementation may also be worthwhile.

Anyway Ben, all the best with your search for answers


Posted in on 03 Mar, 2011 - 5:06 pm

Thanks for following this up for me Barry - i really appreciate it

Posted in on 02 Mar, 2011 - 3:59 pm

Thanks for taking the time to share this info Barry - anything that can help is worth a try - especially when it's legal, easily obtainable and inexpensive as this regime certainly is.
However, I must admit I am a little confused about the science behind the author's reasoning.
Perhaps you have a more scientific mind than mine and can clarify a few points in the post - firstly, am I am correct in saying the author was seeking to elevate a low arterial ph by the regime of calcium citrate, vit D3, magnesium and zinc? And secondly, I am presuming that the author feels that making the blood more alkali was having a +ve effect on his CHs - is this correct?

The reason I am asking these questions is that if my understanding of the science is correct then the author may be on to something here - a couple of months ago (not in CH cycle at the time) I consulted a chiro and during the consultation he recommended I take a mineral supplement plus ural 2x daily in order to "alkalise" my body. He stated that with an overly acidic body, a person would be unable to enjoy a sleep in because they would wake up stiff/sore and headachy - this caught my attention as it was very descriptive of me - so I gave it a go and hooray! no more feeling hungover each Sunday morning because i had chosen to roll over and grab a few more zzz's.

Anyway, to get to the important bit, I'm now 3 weeks back in CH cycle, still taking my minerals and ural but guess what - suffering nowhere near as bad as previously - less headaches and less intensity. Still horrible, but bearable. Perhaps, just perhaps, increasing the body's ph is helping.

Also - another thought that might add some weight to the argument - Ben was a passionate advocate of aspo clear, clearly stating that it had to be the fizzy type of aspro to help abort an attack - could it be that it isn't in fact the aspirin that helps but the alkalinity of the stuff that makes it fizz?

Hope I'm making sense...

Posted in Untitled on 27 Feb, 2011 - 3:46 pm

Hi Zana and welcome to the site. I'm sure you'll find heaps of info and support here that will help you with your battle against CH.

The times you say your headaches strike certainly seem normal (if anything about them can be called normal). During a cycle mine strike about 0745am (or 90 mins after getting up), then about 2pm and 1030pm (or 45 mins after going to bed). Fortunately, it is only mid cycle that I get them during the middle of the night and it's at about 0230am.

I personally haven't heard of any link between head trauma and CH - however that doesn't mean it doesn't exist - and the other members may have more info on this. I also can't provide info on the best way to use O2 cos I haven't tried it - but again I'm sure others will be able to.

I hope you got thru last night okay - I'm sure everyone who has anything to do with his site knows how truly horrible it is when the first signs of a CH strike - you're going about your life quite nicely then suddenly it hits - the realisation that you're in for another one - and the fear or even panic of how bad the beast is going to be - then saying to your loved ones "I've got another headache" before walking away to your own private hell. It sucks, it really does but as I said before, I'm sure you will find some great stuff here to help.

Anyway Zana, you sound to have a great attitude to life and the sh** it throws at us from time to time. Welcome again and all the best.


Posted in Untitled on 06 Oct, 2010 - 4:34 pm

Pleased to hear you are pain free Greg and hoping that I am well on the way there also - had a couple of 3's over the weekend and a 5 Monday night but nothing since. Can't help with the isolated attack though.

Cheers for now

Posted in Untitled on 01 Oct, 2010 - 4:54 pm

Hi guys
have been reading this thread and hoping that Greg is still pain free. As for me, I had to come home from work this arvo in intense pain from a CH that struck out of the blue at 1.30 - must admit it really shook me because it was such an unexpected time of the day (I normally get the wretched things thru the night or within a couple of hours of waking). Anyway, there I was, sitting at the kitchen table with my head resting on an ice pack, bawling my eyes out and I must have fallen asleep at some stage because I stayed there until after 4. Have had a couple of strong sweet coffees and feel almost human again - but just wondering how others manage at work?


Posted in triggers? on 30 Sep, 2010 - 3:18 pm

Have been thinking about my own triggers a little bit lately too - definately not lifestyle but I suspect the internal clock thing. I seem to suffer four cycles per year with them seeming to start about fours weeks prior to the solstice / equinox and then gradually tapering off after the actual day. Don't know - I might be imagining this ..
Cheers and thanks for the great reading

Posted in Untitled on 30 Sep, 2010 - 2:51 pm

Hi Heather and thanks for your kind words!
I have suffered CH for about four years now and am currently 5 weeks into a cycle. Had two last night - both woke me, with the later one being pretty intense but none today thankfully. Currently taking no medication - have only tried paraceutamol/codeine and asprin/codeine mixes which I find don't work so manage with ice and lamaze breathing (how theu tell you to breathe thru childbirth!). Also my GP put me on low dose beta blockers (for blood pressure) which didn't work. Interestingly, the beta blockers came about because I measured my blood pressure during an attack and found it soared despite it usually being within the normal range. Am very interested in trying oxygen and will definately look into this.
Anyway, it's great to find an Aussie site where we can chat because I'm sure only a fellow sufferer has any idea of the suffering this condition causes. For me the worst part is feeling too scared to go to bed each night ...
Strength to all

Posted in Untitled on 29 Sep, 2010 - 4:03 pm

Hi Guys
Have just found your site and looking forward to chatting. I have been suffering for the last month but attacks have lessened in frequency over the last few days so here's hoping...
I live in Regional Queensland and am a single mum of three grown up kids (two still at home). I work in the aged care / disability sector which is very rewarding and in my spare time I enjoy reading, learning about new things and walking the dog. I've recently joined the gym in the hope of maintaining my fitness as I grow older... My dream at the moment is to do a tandem skydive - hopefully around Easter next year.
Anyway, cheers for now