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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Newbie from the other side of the world
        
(Message started by: Keljian on Dec 6^th, 2004, 2:03am)

Title: Newbie from the other side of the world
Post by Keljian on Dec 6^th, 2004, 2:03am

*waves* Ahoy up there,

You know, I've been suffering from cluster headaches (on and off) for about 18 years and the doctors just kept passing me off as having a normal severe headache.

Finally, as of today my gp explained the whole deal about cluster headaches - seems I fit the textbook description of it. Anyhow, I just thought I'd say hello and perhaps share a few bits and pieces with you all. Might even become a regular poster, who knows.

What is good however, is the fact that I now know I'm not the only one suffering - so at least I can talk about it.

Kelj

Title: Re: Newbie from the other side of the world
Post by Svenn on Dec 6^th, 2004, 2:49am

Hi there "down under from up on the top "Norway"

So sad about the diagnose but so happy you found us.
Its tons of info here.

Check the keys on the left and just read,read,read .

Svenn

Title: Re: Newbie from the other side of the world
Post by Keljian on Dec 6^th, 2004, 3:50am

on 12/06/04 at 02:49:00, Svenn wrote:

Hi there "down under from up on the top "Norway"

So sad about the diagnose but so happy you found us.
Its tons of info here.

Check the keys on the left and just read,read,read .

Svenn

Thanks for the warm welcome :)

I should say that I'm now 24, and I've had these CHs on and off for about 18 years, Usually they're around for about 2-3 days, and up to 14 days a year (on average) So I suppose I'm not a "chronic" sufferer. Anyhow as a last resort today I went to my GP (for the billionth time) after a 5 day stretch when it just went on and on, and he suggested that could be the problem, when we went through the symptom list together I was kinda surprised that there was a condition such as this, that fitted my symptoms to the tee.

Anyhow.. so far what I've worked out:

Heavy exercise regularly (aikido in my case- though I've been off that due to another injury) seems to keep the beast at bay to a great degree, Ice packs help. Usually I just curl up in a ball on my bed and try and sleep it off (which sometimes works). Generally no amount of painkillers helps.

Aside that I can't really say much :S The doc's put me on all the usual suspects as a preventative measure for the next few days (paracetamol + codiene + ibuprofen) and I'll see how it pans out. I plan to get back into aikido in the new year, but want to get my fitness back up first.

Title: Re: Newbie from the other side of the world
Post by Svenn on Dec 6^th, 2004, 4:09pm

on 12/06/04 at 03:50:04, Keljian wrote:

Thanks for the warm welcome :)

I should say that I'm now 24, and I've had these CHs on and off for about 18 years,
Anyhow.. so far what I've worked out:

. Usually I just curl up in a ball on my bed and try and sleep it off (which sometimes works). Generally no amount of painkillers helps.

(paracetamol + codiene + ibuprofen) and I'll see how it pans out. I plan to get back into aikido in the new year, but want to get my fitness back up first.

You are sure you been proper diagnosed?
Sorry,just asking because what you are telling does not fit in to ch as far as i know?

Svenn

Title: Re: Newbie from the other side of the world
Post by nani on Dec 6^th, 2004, 4:31pm

Welcome and I'm sorry you're here. Actually the way you describe what you do during an attack doesn't fit the description of a "textbook" or typical CH. The meds you are taking will probably not work on CH. Preventatives that are effective include verapamil, lithium and sometimes anticonvulsants. Imitrex and oxygen are abortives. Perhaps you should see a neurologist who specializes in headaches so you can get properly diagnosed and treated. Pain free wishes to you.

Title: Re: Newbie from the other side of the world
Post by BobG on Dec 6^th, 2004, 7:15pm

on 12/06/04 at 03:50:04, Keljian wrote:

I should say that I'm now 24, and I've had these CHs on and off for about 18 years, You started getting headaches at age 6?That is very unusual for Cluster headaches but not unheard of. Usually they're around for about 2-3 days, and up to 14 days a year (on average) So I suppose I'm not a "chronic" sufferer. Chronic refers to the length of time you are in a cycle or 'cluster'. Don't worry, you are not even close to being chronic or Anyhow as a last resort today I went to my GP (for the billionth time) after a 5 day stretch when it just went on and on, Are you saying that the headache lasted 5 days without let up? Cluster headaches only last 20 minutes to a couple hours and then are gone. and he suggested that could be the problem, when we went through the symptom list Do you have a copy of the doc's symptom list? Below you say the doc put you on codiene + ibuprofen. I really don't think your doc knows anything about Cluster Headaches. A knowledgeable doctor would know that pain killers will not work on Cluster Headaches. together I was kinda surprised that there was a condition such as this, that fitted my symptoms to the tee.

Anyhow.. so far what I've worked out:

Heavy exercise regularly (aikido in my case- though I've been off that due to another injury) seems to keep the beast at bay to a great degree, Ice packs help. Usually I just curl up in a ball on my bed and try and sleep it off IMHO you do not have Cluster Headaches. It is impossible to lie still or sleep during a Cluster attack. I do not know what is causing your pain but hope you find relief soon. (which sometimes works). Generally no amount of painkillers helps.

Aside that I can't really say much :S The doc's put me on all the usual suspects as a preventative measure for the next few days (paracetamol + codiene + ibuprofen) and I'll see how it pans out. I plan to get back into aikido in the new year, but want to get my fitness back up first.

Please try to get a referral to a neurologist that is knowledgable in headaches. Good luck and let us know.

Title: Re: Newbie from the other side of the world
Post by Keljian on Dec 6^th, 2004, 8:01pm

on 12/06/04 at 19:15:17, BobG wrote:

Please try to get a referral to a neurologist that is knowledgable in headaches. Good luck and let us know.

*shrugs* that was the diagnosis. When I say 5 days straight I mean I begin with the symptoms(droopy eye, blocked nostril on one side) in the morning, then it creeps up on me later in the day.

Maybe you're right, maybe the doc doesn't know what he's talking about. I'll see what I can do about getting a referral to a neuro sometime soon.

Title: Re: Newbie from the other side of the world
Post by BobG on Dec 6^th, 2004, 9:04pm

Quote:

When I say 5 days straight I mean I begin with the symptoms(droopy eye, blocked nostril on one side) in the morning, then it creeps up on me later in the day.

That does sound more like cluster headaches. I wasn't sure if you had one headache that lasted for 5 days or if you got a new headache EACH day for 5 days.

Have you taken the 'cluster quiz' under the button on the left side of your screen? Try it and let us know. Also read under all the buttons on the left. Lots of information there. Educate yourself because you may have to teach your doctor or neurologist on the subject of clusters.

Title: Re: Newbie from the other side of the world
Post by Keljian on Dec 6^th, 2004, 9:48pm

Taken the quiz, 3/5 of the cluster symptoms.

Beginning to read all the stuff (lots of info)

Title: Re: Newbie from the other side of the world
Post by Keljian on Dec 7^th, 2004, 7:59am

Ok so latest thoughts: Adrenaline aborts CHs, so .. maybe Aikido was doing that - every time I'd hit the mats (not literally) I'd get an adrenaline rush, I almost became an addict to it. That could explain why I never got CHs while training.

What this COULD mean: Aikido could be the cure people are looking for. I've trained with people age 8 through 88 there is no age limit on aikido. It's good for your health in general (you'll end up fitter than otherwise), plus it's inexpensive in comparison to some of the other treatments people are suggesting.

just a thought.

Title: Re: Newbie from the other side of the world
Post by Keljian on Dec 7^th, 2004, 8:01am

just as an addendum - aikido is technically non violent.

( info here if you know know about it: www.aikidofaq.com )

Title: Re: Newbie from the other side of the world
Post by BobG on Dec 7^th, 2004, 7:24pm

Quote:

I think you may be correct with that theory. More than one person here has used excerise to get pain relief. For a long time I’ve believed that relaxing brings on the attacks. Staying busy and a little stressed (good stress- from excecise or bad stress- your nagging significant other) Helps keep the attacks away.

Quote:

What this COULD mean: Aikido could be the cure people are looking for.

Cure? Nope, don’t think so. Abortive? Very possible.
The good thing is Aikido can be great excecise even if it has no affect on clusters.