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Topic: Have I started to have Cluster Headache? (Read 555 times) |
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jorj-X
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Have I started to have Cluster Headache?
« on: Mar 4th, 2004, 11:32am » |
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For those who are in the UK, you may have been listening to the talk on Radio 4 about headachse which has just finished. As well as talking about Migraine the guy talked about cluster headache and a couple of things he said switched a lightbulb on and 15mins later I'm posting here.
Basically I wan't to know what cluster headache suffers think about some symptoms I had recently. Let me say first that I am a scientist and work on the development of the brain, so its not as if I can't understand the "compare and contrast" type table for the various types of headache but I don't find it very helpful as I know I get migraines but am I scared that I have had something worse.
Ok, As far as I can remember I have had migraines for the whole of my life. When I was a kid I got the pain on the left side of my abdomen and would end up curled up in a ball unable to move. As I got into my teens it gradually switched to being the standard behind an eye type affair. I've been quite sucessfull in preventing my migraine, basically I get a few hours notice of one coming on and can get home go to bed and try to sleep (which is best but only rarely am I quick enough) or go sit under a hot shower in the dark for a few hours. So as far as migraine goes I think I'm quite in control.
I do get standard head aches from sitting at a PC all day or crouching over a microscope with my glasses off but a couple of months ago I went through a few weeks of something completly different.
In the first attack I awoke in the middle of the night with an intense pain behind one of my eyes. It was much worse than a usual migraine and I have never been awoken during the night before. Again unlike the usual my eye was red and watering like mad. I tried the usual treatment but instead of my usual.. sit and just let the pain swim around me I couldn't get away from it.. that sounds strange but I can't describe it any better. Needless to say I ended up pacing up and down the house like a mad man, occasionally rolling on the floor and crying and begging jesus (something that I haven't done before). About two hours later it just went, over the space of about 10 mins. Also ahem... the problamatic side effect of hornyness that I get with migraine didn't occur.
Then the next day I got home from work, sat down in front of the TV and suddenly noticed that "ohh I have a head ache". Then "holy ...." and I was on the floor in absolute agony. Same as before and ended up going to A&E but it went away before the good ol' NHS got around to dealing with me.
I then had 3 weeks or so of similar stuff every second or thrid afternoon. Then I haven't had one for about 5 months. My GP was useless and basically didn't beleive me when I told her it was not a migraine.
To be honest, I am in terror that it happens again. Do ppl think this sounds like cluster headache? and hence I can look forward to it happening again or do ppl think it sounds different from their experience and is not cluster headache.
Thanks
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Tiannia
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Re: Have I started to have Cluster Headache?
« Reply #1 on: Mar 4th, 2004, 11:57am » |
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If it is clusters then it is eposodic. Not that that is good news, but it is better then being chronic and not having any type of break. You need to not talk to your GP about it, but see a neuro or a specialist in Headaches. Yes it does sound like Typical clusters with the waking up and not being able to sleep it off. Those are migraine symptoms. Take the cluster quiz to the left and answer the questons about about when it was happening. That should give you a general idea if it is clusters that you need to be researching.
Hoping that they dont come back for you.
Tiannia
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Prense
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Re: Have I started to have Cluster Headache?
« Reply #2 on: Mar 4th, 2004, 12:00pm » |
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on Mar 4th, 2004, 11:32am, jorj-X wrote:| To be honest, I am in terror that it happens again. Do ppl think this sounds like cluster headache? and hence I can look forward to it happening again or do ppl think it sounds different from their experience and is not cluster headache. |
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Sounds exactly like CH to me!
If, in fact, it is CH, and this was your first episode, it is not likely that you will be able to predict your next one. Rest assured that you will have more though...again, if it is CH.
For now, I would suggest reading/printing as much info here as you can handle. Then, at the first sign of your next episode, you will have some things to suggest to your doc to try.
Unfortunately, you have to be getting attacks to be able to find out what works for you and what doesn't. CH is all about trial and error.
Here's hoping that you never go through that shit again!
Chris
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pubgirl
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Re: Have I started to have Cluster Headache?
« Reply #3 on: Mar 4th, 2004, 12:16pm » |
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Jorj
I'm so glad the radio programme is reaching people like you already  What great free publicity and what a great programme. Good news for Ch sufferers!
For those who are not in the UK, the guy on the Radio was Prof Goadsby! He was a total star ad I have never heard anyone describe the pain of CH quite so well before and evincing such sympathy from listeners. He really told it how it was in comparison to migraine pain!
We managed to get OUCH UK mentioned as well as sumatriptan and 02 treatments via 'planted' callers from OUCh so it was a great result.
Jorj, what you describe sounds a lot like CH, but a good neuro, and there are lots around now will diagnose for you.
You can also see 'the guy' himself (Prof Goadsby) if you get a referral to his clinic at Queen's Square or volunteer for their 02 research trials.
The site Goadsby was referring to by the way was OUCH UK(www.clusterheadaches.org.uk) the UK support site, but coming here too is the best of both worlds!
Hope you don't have CH, but you will get loads of help here, and at the Uk site if you do
Wendy
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| « Last Edit: Mar 4th, 2004, 12:28pm by pubgirl » |
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pubgirl
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Re: Have I started to have Cluster Headache?
« Reply #4 on: Mar 4th, 2004, 1:08pm » |
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P.S.
PG was asked by the presenter what CH pain was like and he said something along the lines of:
"imagine having both your legs broken, and giving birth 5 times a day without pain relief, or having your head tied down while someone drills through your teeth-imagine that and know that CH pain is worse"
Brilliant!  What a doc!
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Filbert
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Re: Have I started to have Cluster Headache?
« Reply #5 on: Mar 4th, 2004, 1:11pm » |
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Hi
The almost exact quote from Proff Goadsby on BBC radio re the level of pain of cluster headache was
" Imagine the pain of having both legs broken,or giving birth 5 times a day without pain relief,or someone has tied your head down and is drilling through your teeth- imagine that and know cluster headache pain is WORSE"
Not a bad description.
Filbert
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Filbert
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!!Re: Have I started to have Cluster Headache?
« Reply #6 on: Mar 4th, 2004, 1:15pm » |
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Seems pubgirl beat me to it
Story of my life!!
Sorry for the repeat.
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pubgirl
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Re: Have I started to have Cluster Headache?
« Reply #8 on: Mar 4th, 2004, 2:29pm » |
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John
thank you very much, I'm not very good at this putting links in business! That is SO helpful
Wendy
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thomas
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Re: Have I started to have Cluster Headache?
« Reply #9 on: Mar 4th, 2004, 2:51pm » |
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on Mar 4th, 2004, 11:32am, jorj-X wrote:
In the first attack I awoke in the middle of the night with an intense pain behind one of my eyes. It was much worse than a usual migraine and I have never been awoken during the night before. Again unlike the usual my eye was red and watering like mad. I tried the usual treatment but instead of my usual.. sit and just let the pain swim around me I couldn't get away from it.. that sounds strange but I can't describe it any better. Needless to say I ended up pacing up and down the house like a mad man, occasionally rolling on the floor and crying and begging jesus (something that I haven't done before). About two hours later it just went, over the space of about 10 mins. Also ahem... the problamatic side effect of hornyness that I get with migraine didn't occur.
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I have been there before, my friend and what you are describing sounds like ch to me.......... you poor devil. 
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Giovanni
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Re: Have I started to have Cluster Headache?
« Reply #10 on: Mar 4th, 2004, 3:25pm » |
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After you launch the radio, skip the first 20 minutes and you can pick up the conversation on CH.
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Tiannia
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Re: Have I started to have Cluster Headache?
« Reply #11 on: Mar 4th, 2004, 3:30pm » |
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I cant wait to try it as soon as I get home to hear it.
Thank you guys.
Tiannia
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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pubgirl
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Re: Have I started to have Cluster Headache?
« Reply #12 on: Mar 4th, 2004, 3:31pm » |
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apparently you go here to hear it
http://www.bbc.co.uk/radio4/science/rams/checkup.ram
This will play the R4 Check Up interview again! How I have no idea, someone else with a technical bent here must know!
Thanks to Paul for that!
Wendy
P.S.
You won't learn anything new Tiannia, it was a general programme, You need to hear PG in person just about CH to do that.
Anyone in London in June can do so as he is appearing as speaker at the OUCH conference then
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| « Last Edit: Mar 4th, 2004, 3:34pm by pubgirl » |
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Tiannia
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Re: Have I started to have Cluster Headache?
« Reply #13 on: Mar 4th, 2004, 3:47pm » |
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Actually what I am hoping is that my hubby will listen to it. I can t get him to come here but I can cheat and play it while we are at home and he is sitting on his CPU tonight.
Tiannia
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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pubgirl
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Re: Have I started to have Cluster Headache?
« Reply #14 on: Mar 4th, 2004, 3:51pm » |
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CPU?
RAM?
oh dear, I have a lot to learn Tiannia 
W
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BlueMeanie
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Re: Have I started to have Cluster Headache?
« Reply #15 on: Mar 4th, 2004, 7:47pm » |
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Jorj,
Sounds like you got episodic clusters. Hope you get relief soon. Check the meds section for abortives to tame the beast.
PFDAN to you.
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TxBasslady
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Re: Have I started to have Cluster Headache?
« Reply #16 on: Mar 5th, 2004, 1:29am » |
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Hi jorj,
Welcome to the board.
Sure sounds like CH to me too.
Guess the only thing I would like to add to what has been said is that it is a very good idea to keep a headache diary. I am episodic.....but when I was in cycle, after each visit from the beast, my husband logged the time, duration of headache, time meds were taken, etc. This was a great help to my doctor.
Hope you find the right meds to help with the pain. Let us know how you're doing.
PF vibes,
Jean
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