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Topic: Hello fellow cluster peeps (Read 213 times) |
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JockOfHearts
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Hello fellow cluster peeps
« on: Aug 20th, 2004, 5:21am » |
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Hi, I'm Jocko and live in SW Scotland.
What a wonderful site. I've suffered since my early 20's after having an operation on my sinuses, I'm now 36.
I've twice been diagnosed with trigeminal neuralgia and it is only after visiting their website that I heard about cluster headaches. My symptons are classic of cluster; long periods of regression, the blocked nose, waking up during sleep etc, so now I'm off back to the doctor to get the right drugs to help.
Loved the piece "The Devil" as did my partner, who has now seen me in pain for the first time. It has given her an idea of what we go through.
I'm now a week into this current cluster and am missing my alcohol  but they are always worse if I have some, and was the trigger for this current bout.
Can anyone tell me what it is about alcohol (or the constituent) that is the trigger?
Also, although I used to get the clusters every year in a February without fail, since being on Tegretol (for TN) in 1998 I never had an attack for 3 years.
Also during that time I have been having my ears syringed, once during clusters and they cleared up, other times delaying the onset by 20 months. Or is it psychosematic? Can there be a link?
Anyway great to have found the site, I've posted a "funny" for a laff, but you may have come across it before as I'm not sure how old it is....
Cheers and be pain free
Jocko
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FZfan
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Re: Hello fellow cluster peeps
« Reply #1 on: Aug 20th, 2004, 9:24am » |
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Hi Jocko. Welcome to clusterville. Read everything you can here and arm yourself with information.
I'm no expert, but I'm guessing the problem with alcohol is that it is a vaso-dialator? The reason o2 is so effective for most of us is that it acts as a vaso-restrictor.
I would highly recommend getting oxygen, a high flow regulator, and a non-rebreather mask right away.
As far as having your ears syringed? My guess is that it was simply a coincidence that your h/a's stopped when you had that done. The beast is very tricky that way. All too often we try so many different things, that when the attacks stop it is natural to assume that the last thing we tried was the "magic bullet". The reality is, this is hardly, if ever, true.
Good luck in finding what works for you for relief. The answer lies here somewhere.
Now I'm off to check out your funny.
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marfanoidus
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Re: Hello fellow cluster peeps
« Reply #2 on: Aug 20th, 2004, 1:05pm » |
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Well said FZfan.
Those of you who know me know I associate a couple of my previous cycles to food allergies. However, could it have been coincidence that when I eliminated the foods the HAs went away? Damn right it could have been.
To be honest, the only meds any of us clusterheads can know help us, and I mean know like you know you're reading this now, are the abortives. I know O2 and Prednisone help me. I don't know if Verapamil or MaxALT helps. Do the preventives work, possibly. Or it might it be tricks of the beast.
But when a cycle comes to its end, none of us can actually know that any medicine played a part in it, because the beast may simply have left on its own.
Same goes for the beginning of a cycle - it may seem delayed and we may want to attribute the delay to a medicine, but none of us can know if it wasn't just the beast.
The same applies to sinus surgeries, ear syringing, doing a jaja dance under a full moon... you get the point, maybe these things do influence our cycles and maybe not - we can't know.
Forgive my verbosity, I simply cannot bereft myself of elongated speech.
My point is this - focus on what you can know might stop a CH. Fighting a cycle is one thing, but by definition fighting a cycle is fighting one CH at a time.
Oxygen - its not just for athletes anymore.
best of luck to all
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JockOfHearts
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Re: Hello fellow cluster peeps
« Reply #3 on: Aug 23rd, 2004, 7:35pm » |
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Many thanks for the replies and encouragement.
Well I went back to the doctor, and I'm still on tegretol - "you said it worked for you last time" or maybe now i understand a bit more and maybe it was just the cycle ending?
Anyway, will have to persuade him to put me on oxygen, if this really is the most effective, for the next time... He was definately not keen to go anywhere near anything to do with ergot. E-mailed me a page on St Anthony's Fire......
Will take on board about clutching at straws re syringing etc, now I now more about condition.
Regards
Jocko
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thebbz
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Re: Hello fellow cluster peeps
« Reply #4 on: Aug 23rd, 2004, 11:40pm » |
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Jocko,
The more you know the better to fight with. Sorry for the pain, your not alone . Always someone here for them tough times.
BB
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