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Posted in Detox? on 13 Feb, 2011 - 7:33 pm

saintpeter said: ... Despite this, a lot of us ignore the warnings and carry on mistreating ourselves.

Says the guy with an avatar holding a bottle of bubbly. icon

Sorry to read that you're back on again - all the best for the session. I'm still 'green'! Since Xmas when I decided to have a few glasses of champagne (bugger it) and another 'do' on Boxing Day. No headaches! Having been exceedingly careful of alcohol intake (thanks Dusker) I've found that causing my nasty liver numbers to head north my CH attack has stopped! Not talking bottles of Jack Daniels here by the way just a bottle of red a day.

There are a myriad of posts on the site about not drinking during a CH period, but for me it seems to stop them. Not for everyone obviously but it does, I think, just emphasise that no-one knows what causes them or what can alleviate them (for everyone).

I also thought that smoking dope for years could have been a cause. So stopped ten years ago. And have started again with absolutely no ill effects! Munchies and music - can't beat it.

All the best to you all. One day someone will find the commonality between us all.

Posted in Untitled on 15 Jan, 2011 - 6:06 pm

Guy (@14 Jan),

Not sure if it's normal but being a chronic sufferer (or maybe now episodic hopefully) I have had CH on both sides and once on both at the same time. They tend to stay on the same side until a couple of days break (end of an episode?) , then maybe switch sides. I "prefer" the left for some reason. icon

Posted in Untitled on 15 Jan, 2011 - 5:51 pm


Click on the link left (MEDICAL INFO - O2 treatment). I too was told by my GP that o2 is only prescribed for those with breathing difficulties. There's info. about BOC and their freecall healthline in there.

Another female sufferer - I'm beginning to wonder if women with CH have been misdiagnosed because of their sex or that they just handle the pain better? Good luck to you Nomad.

ps I've switched to Green as no CH for three days! I'm an optimist.

Posted in Untitled on 03 Jan, 2011 - 5:09 pm

For those who have no idea about Paul's post it is to do with English football. Maybe forget my train set theory - it is the football teams we support that are the cause!

Posted in Untitled on 22 Dec, 2010 - 7:33 pm

Hi Sunset21,

Thanks (I never thought to search youtube); it would appear to be the one.

Is this procedure carried out in Aus.? It never said where in the brain the electrode was implanted - I presume the pituitary? There are suggested links (of course) but this one may be of interest, especially to newcomers:

I may, however, have discovered a 'commonality' for all CH sufferers! Model train sets! I was right into building my first since being a kid when my CH started! I await a flood of corroborating posts from all fellow sufferers. CH solved in one.

Happy Xmas to all.

Posted in Untitled on 18 Dec, 2010 - 6:08 pm

A friend dropped in today whilst I was out and told my wife of an ABC programme he'd watched. Specifically for CH. Link to all I've found so far :
" (cut and paste).

If anyone can find the programme itself can they please post a link?

Posted in Untitled on 15 Dec, 2010 - 9:56 pm


My orgasm headaches didn't last for long (in terms of my CH history); I'm now back to the normal male thing of just falling asleep! Not being frivolous - your's may just be a passing thing too. They do set the pulse racing which is all part of a theory as to CH causes.

Hope the MRI shows something (I've never had one). I had CT scans and X-rays galore: all showed nothing untoward. Maybe, one day, someone will take enough interest to do a DNA survey on us. Have we all got the same bit that's not quite right?

Hang in there. By the way, have you talked to your (adult) kids about it?

Posted in Untitled on 12 Dec, 2010 - 10:22 pm

Katrina (and all the other female posters on here),

When I was first diagnosed the majority (8-1 in those days) were male. It seems to me that the stats may have been wrong all along. I have no idea why.

I'd suggest reading as many posts as you can. There are lots of things that work for some (some of the time) and not others (all of the time). There is not a GP who knows more about CH than you can by researching this site and others.

Orgasm headaches - you are not alone. For a couple of years I loved (as always) and dreaded an orgasm. It meant an almost immediate CH attack. These CH's had nothing to do with my body clock!

All the best.


Posted in Untitled on 12 Dec, 2010 - 9:41 pm


Not sure that this is current but... after a few years of having CH my GP suggested I should apply for a DSP. It wasn't that I couldn't work (I was trying to run my own business and not doing too well obviously, and was considering applying for the dole) but that I couldn't be employed with any guarantee that I could front!

My GP filled out the form, I had an interview with the (then) DSS doctor who knew about CH and I was put on a pension straight away. My case was reviewed annually and about ten years ago I had to front the same GP again with a form the length of War and Peace for him to fill out. To put it mildly he was less than impressed! It would have taken him a couple of hours to fill in all the things I'd tried and my (then) medication etc. with no payment to him. He filled in the "comments" section (I won't repeat what he wrote), signed it and I posted it back. I have never had another review since!

Get your GP to fill out the form (however long - it's the first) and take that in. I'm sure they know more about CH than when I first started having them. I hope that you are episodic and can then get back to work. A word of advice to all by the way: don't EVER use any power tool etc. when marginally affected by CH or the drugs we take to abort them.

Posted in Just Venting on 03 Nov, 2010 - 10:06 pm

Hey St. Peter (sorry - a good old rock and roll line). I always assumed you were living in Saint Petersburgh USA! Just checked the "From" link. Like Roger asks - wtf are you doing there? Went there in 1966 when it was Leningrad - fantastic city.

I presume that is a bottle of Aussie champagne (aka sparkling whine) you are holding?

Posted in Untitled on 26 Oct, 2010 - 8:26 pm

Roger said: It is definitely the trigeminal nerve, -- that has been proven by directly interfering with the nerve to abort cluster headaches.

That's a bloody sweeping statement! O2 only works for 50% of us (I'm starting next week hopefully), red bull works for less than 50% and alcohol does not trigger my attacks.

Robbin - I've done the chiropractor trip. Personally it was a disaster. He never looked at my neck X-rays (C3/4 joint - a potential for CH - was stuffed) and then said I had a misalignment of my lower back, which never troubled me. Ever since that "manipulation" I can't stand for long and have to sit, and then have to stand again! Any chiropractor that says they can fix a CH is, with respect, "up himself".

Oh - did the sinus trip as well. The funniest of times spent at the Royal Hobart.

Posted in Untitled on 26 Oct, 2010 - 7:35 pm

dragon lady,

Are you my mother-in-law? Only joking.

Amazing to know that Virgin are aware of CH and take care. Maybe Richard Branson will enter the health care arena? A free flight on the spaceship trip for CH sufferers would be nice.

Have a happy and pain-free trip. Enjoy.

Posted in Untitled on 16 Oct, 2010 - 5:08 pm


Most of the stuff I've tried have contraindications that I should note. I don't. If it helps reduce/stop an attack then I'll try it. FFS I've considered killing myself on several occasions during attacks. What's the difference?

An aside: I'm not sure if it was just good timing or not but, when my kids were young I either didn't have attacks whilst they were awake or I somehow managed to persevere. It was only when they reached about ten that I absented myself and their Mum had to say "Dad's got a headache".

All the best mate.

Posted in Just Venting on 16 Oct, 2010 - 4:39 pm

Even without CH I'd be an archetypal 'grumpy old man' (maybe). The last two days:

Snow, hail, rain, snow. Stuck inside (which I hate).
Car wouldn't start. It likes the weather just as much as I do.
My wife's cat. Actually that's every day, not just the last two.

It would be nice to have a dedicated thread to just chat (without mention of CH). We all do something apart from just handling it, surely?

Dev1980 - that comment would cover quite a lot of things for me!

Posted in Untitled on 12 Oct, 2010 - 10:16 pm

My condolences Heather.

Posted in Untitled on 12 Oct, 2010 - 9:49 pm


My apologies for not recognising Ava as being - well - Ava. Which pales into insignificance with the news of your daughter. I have no words.

Given the "big smiley" smiley I presume you're re-enjoying the role again? My best wishes to you and your 'new' family.

I won't mention CH. Just bloody well ignore it.

Posted in Untitled on 11 Oct, 2010 - 9:08 pm


Don't know where you live. There is a list of 'good' GPs and neuros ("Practitioners" on the left menu bar) who may be able to help. My own GP is now very knowledgeable and would pick it on a first consultation. He'll probably never see another CH patient in his life though. That's the hard part for first contact. You really need to front up and tell your GP what you think you have - if he doesn't know he'll refer you to a neuro hopefully.

First steps, but quickly. Forget prophylactics (what can stop them happening) in the short term. That takes a long time of experimenting. Just find what can stop an attack. That's easier and there have been some suggested. As Heather said - just forget painkillers (even morphine) - they just don't work. Find something that will cut an attack as short as possible. Try just working down the list in the "on-line" poll. Something will work.

Oh - and be honest with your partner/parents/close friends (or whatever). Their support, when informed, can be the difference between 'suffering' and living.


ps don't feel sorry for those that have suffered for years Kel. It's a bugger I agree but I could have fallen out of that tree when I was ten, I could have crashed my car (pissed) when I was 17, I could have had any number of worse things hit me. It's just CH. Fortunately life goes on.

Posted in Untitled on 11 Oct, 2010 - 8:25 pm


I can only empathise. I'm in the same boat so to speak and my recent attacks seem the worst ever. They probably aren't actually; just so bloody annoying after all these years.

Lovely pic. Grandson I presume? I'm still waiting for that to happen - the sons better be quick!

All the best.


Posted in Untitled on 07 Oct, 2010 - 8:57 pm


Read as many of the posts as you can; read the links on the left; try everything until you find something that works for you.

There's an English equivalent of this site I think. It may have much more info on specialists.

Good luck.

Posted in triggers? on 07 Oct, 2010 - 8:51 pm

OK Heather,

My hands are up! I hadn't read the O2 link on the left - I thought it was about the treatment possibilities, not how to source it. If there was a smiley for 'idiot' then I'd insert one here!

Anyway - o2 stuff on its way and I'll try it. I also enquired about the Imigran nasal spray. It's sort of mutually exclusive with Zomig so I'll finish my current truck load of trusted Zomig and then try the Imigran.

I've had a bad few days. After 26 years I didn't think CH could throw anything new at me! Over all that time it was pretty constant in timing (for the most part) and intensity. I had six over 18 hours yesterday; the worst 2 gave me hints on the left and then hit me on the right! Would be amusing if it wasn't so annoying.

What's wrong with the helium joke? Has anyone tried it? May be the major breakthrough we've all been searching for.

Posted in Untitled on 07 Oct, 2010 - 8:25 pm

Hi Kellie, sorry to 'meet' you,

If you've read some of the posts on here you'll have realised that most CH sufferers are better informed than most specialists or GPs on the subject. There's an online poll on the left which lists most of the stuff people have been prescribed and have used. Arm yourself with as much info as you can and take it along to your appointments.

You'll realise that what works for someone doesn't work for someone else. And what works for you in one cluster won't work in the next. I sincerely hope that you are episodic - don't waste the remissions (but continue researching).

CH isn't much fun but it is manageable. All the best,


Posted in triggers? on 03 Oct, 2010 - 6:14 pm

Dusker said:
"Yes it was another loss of Australian talent to "overseas".

Just spent some time reading older posts on the site. I realised that I had been 're-inventing the wheel' with some stuff I've posted - my apologies to all. Anyway - check out this link!

Just a bit more on my last visit to my GP. He said that medical oxygen is only 'prescribed' for those with breathing difficulties (that may be the norm in Tassie)? There have been posts about just using an oxy bottle (as in Oxy actelyne). I'll revisit the GP but have several mates who use oxy for welding/plumbing etc. and can probably get a mask via. Ambulance Tasmania contacts. Definitely on my list for this week. If it doesn't work I'll just substitute helium (for a laugh).

Posted in triggers? on 02 Oct, 2010 - 10:25 pm


The trigger I referred to was reading all of those articles! Never failed.

ps - must find a picture. I have one when I wasn't suffering (I think).

pps - went back to my GP last week for a chat (and new Zomig prescription, amongst other things). It was good, basically because he has students from UTas with him on occasion. As every time this situation has occurred my GP does the right thing. Asks me to describe my symptoms and then asks the student to diagnose me. Must have done it about eight times now and none of the students have ever heard of CH!

This (young - they all are at my age) med. student was the first to show any animation, as opposed to just taking notes. He was seriously interested and quizzed me for 20 minutes. Promised he'd look up some stuff and hopefully will be a GP who knows about CH.

Again from reading stuff - the average time for correct diagnosis for CH is 6.6 years (and four 'specialists'). Hopefully this young guy can save some time for anyone he sees with CH.

Posted in triggers? on 02 Oct, 2010 - 9:21 pm

Hi Heather,

Firstly - Goadsby's an Aussie! Born in Melbourne (I think). Oh well.

The "touchneurology" site has some interesting articles; shame they can't write two versions - one for their peers and one for us sufferers. Some of the stats in articles annoyed me, listing drugs we've all tried and then stating they showed an improvement of 80% of patients. Such small samples sometimes - a double blind with eight contestants in one I read. To be honest I found reading heaps of 'papers' on CH very depressing, which is the last thing I needed over the last three days. I think I have, finally, found a 100% trigger for my CH!

All the best - stay green.


Posted in triggers? on 01 Oct, 2010 - 12:06 am

Dusker said:
"I will commit to having a little play on the internet later to day to see if there is anything new I can find on Peter Goadsby that is available and will advise either way.
Cheers Heather."

Found this on OUCH (UK) Heather, from 2007 -

You'll have to scroll down to "Transcript" but an update from Goadsby. It's pretty turgid stuff and I hope the presentation was better than the transcript. I've only read it once (about a third of the way through I had to have a two hour break for latest attack). One thing (I think) I remember from it is that UK CH sufferers are the same percentage as UK MS sufferers. Anyone for a CH "read-a-thon"?

It looks like an interesting website by the way - I'll check out more tomorrow.

Posted in Untitled on 29 Sep, 2010 - 9:46 pm


How long have you been suffering? 4-8 in 24 hours (with no medication?). I hope you've read posts about what can help.

My only suggestion re. a good nights sleep is - don't go to bed. As an attack calms down sit in an uncomfy chair, close your eyes and sleep. After about four times of nearly falling off the chair then bed seems to work for me. I'm not joking or being frivolous - this is what I do. I have done some nasty damage by actually falling off the chair though - didn't hurt as much as a CH.

I doubt that any CH sufferer has done anything to deserve it - shit happens. We could all have won div1 in Tatts instead.

ps - is that a hexadecimal member name that I should de-code?

Posted in Left or right sided on 29 Sep, 2010 - 5:55 pm

Solely left for first ten years then switched to the right overnight! Then back to the left, then both at the same time (nasty). Randomly seem to switch and stay the same side for a couple of months.

Prefer the right - much more painful but much shorter.

Posted in time effect on 29 Sep, 2010 - 5:35 pm


What size oxy bottle do you have? I try to keep up with an Ambulance Tasmania volunteer group; we have a bottle that, at 15 lpm, would last about 20 minutes max. From what I've read about o2 therapy, 15 lpm is the minimum you use?

Clock watching - definitely. Once an attack has gone over an hour I batten down the hatches as it were. Unlike Roger what is actually 5 minutes seems like 5 hours for me. I've been known to check that the battery in the clock was still working.

ps Roger. I just (for the first time) clicked on the link to "Middleton". Google maps has moved me about 150 kms north west (to where it's even colder)!

Posted in triggers? on 29 Sep, 2010 - 5:23 pm

Roger said:
".... but of course, when in remission, nothing causes them, because we're not having an cluster..."

That then begs the question "what causes us to start a cluster cycle"? It's obviously not a lifestyle thing as we haven't changed our lifestyle!

Bearing in mind that, until about nine months ago, I was a chronic sufferer the six month break I had was delightful to say the least. During that break I did what I do and then all of a sudden I'm back with CH. I didn't change anything but they just started again. So - what caused the cluster?

I note that the interview with Dr. Peter Goadsby was in 1999! Any news on any further research he's done?

Along the same lines - has anyone ever seen ads. for CH sufferers to take part in any research? There are often ads. for people to take part in various trials (for a variety of 'disorders') at Tas. Uni. and I'd happily be part of any trial for CH.

Four hours sleep last night - off for a nap.


Posted in triggers? on 27 Sep, 2010 - 6:22 pm

Triggers - interesting, but overrated in my opinion. Again, lack of research annoys me. We can do our own logs of what we eat, drink, smoke, do and so on, but we only tend to do that during a cycle.

What gets me is (I'll go personal) is I can live the lifestyle I want when in remission with no ill results. Why do I not get a CH? When in a cycle I have to watch everything and then take note. It makes no sense.

A classic example for me is the afternoon nap. When in remission I wake after 20 minutes and feel refreshed and raring to go. I don't dare have a nap when I'm in a cycle! What's changed physiologically?

Anyway - I don't think that any of the things I do triggers an attack. Something my body does (outside of my control) does. Just nice to find what that is.

Posted in Untitled on 27 Sep, 2010 - 6:03 pm


I try to maintain my (strange) sense of humour but it is bloody difficult some times. 3.30 am in Sth. Aus. isn't any warmer than Tassie surely (in winter)? I'm sure your neighbours will understand by the way.

I normally feel the cold too, more so as I grow older. Woke again last night sweating in bed - the CH passed within ten minutes (again). I'll try to find some sort of temperature monitor too.

I understand that you are having it much tougher than us "just CH" sufferers and I wish you all the best. As I said (somewhere) I feel fortunate that CH is all (well nearly) that I suffer from. All others are either self-inficted or a result of CH itself.

Grandma mark 2? Good on you - I'm still waiting for either of my sons to even find a partner!

All the best to you,


Posted in Untitled on 27 Sep, 2010 - 5:47 pm


Firstly thanks for organising the website. And thanks also to those who have posted - it's been interesting and informative reading alternative approaches to CH.

I tried Imigran (tablets) a long time ago with no result. Zomig was the third of the class that came on the market - it does work (for me). I haven't tried the nasal spray but will look into it. Or maybe snort crushed Zomig?

Never noticed a cold spot on my neck. First sign for me (if I'm awake) is a tingling type sensation in/alongside a nostril. I was born in the UK too and ended up in Tassie when 28 - if all CH sufferers are like us we've found the key to the problem?


Posted in Untitled on 25 Sep, 2010 - 9:48 pm

Joined recently so thought I should say hi. Suffered (chronic) for 26 years; longest remissions were about 4 weeks until recently – a 6 month break (lovely). They came back of course and I’m now about 10 weeks in to the latest. Just a few thoughts.

I was misdiagnosed for about three years. Had teeth removed, had a chiropractor stuff my neck and back, tried acupuncture and so on. I’ve tried most of the drugs and suggestions listed on here. Visited arrogant specialists (one of whom eventually diagnosed my CH) and none of whom was at all helpful. My local GP leant me anything he had on the subject (pre Internet) and I began to suggest things to him. Eventually we ended up with Zomig, the only thing that has helped.

Anyway – thanks for the site. I’ve read heaps of the posts and will visit my GP again with some additional questions. Compared to many on here I feel reasonably lucky. Having said that I really do miss having fathered two boys who have never known me without CH. That annoys me.

One thing that has always concerned me is the apparent lack of on-going research. One of the neurologists I visited told me “why should there be – Lithium is proved to work”! What I’ve read on here about the part the hypothalamus plays is interesting. This from Wikipedia –

The hypothalamus functions as a type of thermostat for the body. It sets a desired body temperature, and stimulates either heat production and retention to raise the blood temperature to a higher setting, or sweating and vasodilation to cool the blood to a lower temperature.

I read some posts about hitting the aircon at the start of an attack. Living in Tassie that isn’t needed, but the last couple of nights (about 3.30 am) when it kicked in swift and hard I tried the easy option. Just went outside, naked (about 7 degrees), and within ten minutes it was gone! By the time I went back to bed I was freezing but my wife told me I was just “radiating heat”!

A mention of partners. They (thankfully) will never feel what we do. I have missed so many family meals, been unable to go to school functions, missed birthdays and anniversaries and so on. My wife was, rightly, pissed off and I was, wrongly, feeling guilty. Or vice versa. To anyone just beginning this CH journey then straight away bring it in to the open with your partner.

Triggers: there are none. I’ve done the full gamut of not doing this, not eating that. Even got down to checking additives. When I asked myself if “eating cheese when not eating nuts” was the cause I realised I was wasting my time.

I contemplated many years ago about arranging a meeting for CH sufferers. What time siuts you? I cancelled the idea – it would have as much chance as a meeting of agoraphobics!