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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Longevity = Severity ?
        
(Message started by: imnotbub on Dec 14^th, 2005, 11:50am)

Title: Longevity = Severity ?
Post by imnotbub on Dec 14^th, 2005, 11:50am

I have been noticing that many of the most severe attacks comes to those who have been afflicted with CH's for a long time. I wonder if this is because the longer you deal with them, the more severe they get, or is it that it takes a long time for people to realize that this is a recurring problem and don't seek help for awhile?

Title: Re: Longevity = Severity ?
Post by jon019 on Dec 14^th, 2005, 12:39pm

Hi IM,

24 year dancer here. As George Wallace (not a fan, but he was interesting) used to say about republicans and democrats: "Not a dimes worth of difference" in severity from then til now.

Regards

Jon

Title: Re: Longevity = Severity ?
Post by BobG on Dec 14^th, 2005, 1:34pm

My clusters started about 30 years ago. For 20 years they came on strong and regular, 6 to 8 weeks every year, sometimes 2 cycles a year. But they have diminished to the point that I haven’t had a true "cluster cycle” for about 6 years. I have been getting clusters of shadows and I still get an occasional attack, wake up call, once or twice a month but the level is only about a Kip 5-6 and short lived, maybe 20 minutes.
It's nice to be getting old and maybe outgrowing them.

Title: Re: Longevity = Severity ?
Post by MJ on Dec 14^th, 2005, 2:39pm

After 30 years my attacks have remained much the same. Not that they are worse than anyone elses.

I think contrary to what you wonder.
Initially you spend a lot of years looking for help untill you get to a point that you have exhausted all or most avenues for help and find that the current established knowledge of CH keeps repeating itself like a broken record.

It doesnt take too long to realize the reoccuring problem will remain.

Then, after many years, as in my case you give up on finding help from others. However in reality you never stop the search for relief. You enter the realm of doing your own research and quit relying on the medical community who have been unable to help you. You look inward for relief as well.
The hope never dies. You look a lot closer at ways to compensate for CH and carry on as normal a life as you can.

MJ

Title: Re: Longevity = Severity ?
Post by marlinsfan on Dec 14^th, 2005, 4:16pm

23 years for me, and I've had my ups and downs in terms of severity. Haven't put a gun to my head for 10 years or so, that was the worst cycle I remember.

Title: Re: Longevity = Severity ?
Post by Bob P on Dec 14^th, 2005, 4:34pm

35 years here.

First 20 years were like clockwork. After that the remissions got longer and the cycles got longer.

Last remission 2 years 9 months, last clsuter cycle 5 months.

Attacks still feel the same though.

Title: Re: Longevity = Severity ?
Post by StressFree on Dec 14^th, 2005, 4:54pm

Mine got much more severe at the point that the initial chronic cycle was broken. Once they returned a couple of years later, the verapamil and ergotamine didn't seem to help much and the attacks were the worst ever. Imitrex seemed to make things worse when I tried using it, I began getting 6 to 8 attacks per day and even at night. I hadn't had night attacks previously. The cycles now last 6 to 8 weeks, but I get a wonderful 3 or 4 years break in between. Cycles seem to begin after severe colds and long periods of stress. Also I think alergies play a roll. Bad allergies during spring and fall=no cluster cycle. But, no allergy symptoms when I should have them=cluster cycle! Now I try to appreciate sneezing my head off and continually rubbing my itchy watery eyes. I avoid anti-histamine like the plague! Rich

Title: Re: Longevity = Severity ?
Post by Kris_in_SJ on Dec 14^th, 2005, 8:13pm

With 4-5 years between cycles, I must admit I forget what it was like the last time. But I don't think they get more severe. Perhaps we just dread them more as time goes on.

Waiting ... Kris

Title: Re: Longevity = Severity ?
Post by raider_educator on Dec 14^th, 2005, 8:36pm

Newbie here...I have had CH's since 1999, not sure where I read it or if I read it...maybe it's wishful thinking but I thought I had read that CH's generally last 12-15 years. Am I going to have these the rest of my life :o!

Title: Re: Longevity = Severity ?
Post by burnt-toast on Dec 14^th, 2005, 10:20pm

Chronic since day one, severity hasn't changed in 11 or 12 years other than typically predictable ups and downs within cycle over the course of each year.

raider_educator - there are cases where for some unexplained reason(s) CH left some sufferers, unfortunately most are in for a life-long affliction.

Tom

Title: Re: Longevity = Severity ?
Post by Mr. Happy on Dec 14^th, 2005, 10:24pm

on 12/14/05 at 20:36:21, raider_educator wrote:

I thought I had read that CH's generally last 12-15 years.

Horsehockey.

on 12/14/05 at 20:36:21, raider_educator wrote:

Am I going to have these the rest of my life :o!

Plan on it, since planning is everything. Denial is beneath you, and me too.

Any good news is a Bonus Round plus.
RJ

Title: Re: Longevity = Severity ?
Post by gobby on Dec 15^th, 2005, 1:04am

4 years here

My first cycle was by far the worst. 10 after 10 after 10
My last cycle was much easier to get through, and this time, 5 weeks in, it has been (I know I'm gonna' get ripped for saying this), but, "almost pleasent" in comparison to that first time.

Remember I said "almost" :)

Title: Re: Longevity = Severity ?
Post by nani on Dec 15^th, 2005, 5:32am

Not for me. My first several cycles were VERY bad. Then a couple of decades of varying severity. Followed by 5 years of a relatively easy chronic episode. Another BAD cycle last year. Basically...I'm all over the place.
I'm with Mr Happy... I plan on having it forever, so I stay prepared.

Title: Re: Longevity = Severity ?
Post by BarbaraD on Dec 15^th, 2005, 8:42am

Personally, I think you go thru stages... Denial, anger..... and finally acceptance. When you reach the acceptance, they don't get any less severe, but you deal with them better. I've been chronic since 97 and for years I didn't deal with them too well, but now I just accept them as part of my daily routine and lead as normal a life as possible with them.

I'm past the point of apologizing for having CH - that's just something I can't control. If it bothers anyone - get over it!

I don't think they're any more or less severe than they were when they started, I just think I deal with it better now.

Hugs BD

Title: Re: Longevity = Severity ?
Post by Jasmyn on Dec 16^th, 2005, 2:31am

In my 15th year, severity increase and duration increase every year. This last one lasted 14.5 months, only letting up now but then again I've got more meds than ever before.

So I don't know, the only thing you can count on is the beasts unpredictability [smiley=huh.gif]

Title: Re: Longevity = Severity ?
Post by BlueMeanie on Dec 16^th, 2005, 8:23pm

Mine have been the same every cycle for as long as I can remember. No better, no worse. Always terrible.

Title: Re: Longevity = Severity ?
Post by Jonny on Dec 16^th, 2005, 8:45pm

31 years CH, 30 chronic.....in the last year I was able to stop taking my preventitve meds (Which was my life line for many years) and lead a normal life.

I have not done anything different, it just went away.

Could it come back?.....you bet your ass and im ready if it does!!

In all those years the beast only made me stronger to fight his ass!

Title: Re: Longevity = Severity ?
Post by jminmilwaukee on Dec 18^th, 2005, 5:07am

Jonny......Med free!/?!

Congrats man, bout time.

Ohhh, BTW [smiley=moonwiggle.gif]

Love you man