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imnotbub
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Longevity = Severity ?
« on: Dec 14th, 2005, 11:50am »
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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?
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Re: Longevity = Severity ?
« Reply #1 on: Dec 14th, 2005, 12:39pm »
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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
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Re: Longevity = Severity ?
« Reply #2 on: Dec 14th, 2005, 1:34pm »
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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.
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Re: Longevity = Severity ?
« Reply #3 on: Dec 14th, 2005, 2:39pm »
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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
 
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Re: Longevity = Severity ?
« Reply #4 on: Dec 14th, 2005, 4:16pm »
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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.
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Re: Longevity = Severity ?
« Reply #5 on: Dec 14th, 2005, 4:34pm »
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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.
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Re: Longevity = Severity ?
« Reply #6 on: Dec 14th, 2005, 4:54pm »
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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
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Re: Longevity = Severity ?
« Reply #7 on: Dec 14th, 2005, 8:13pm »
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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
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Re: Longevity = Severity ?
« Reply #8 on: Dec 14th, 2005, 8:36pm »
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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 Shocked!
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Re: Longevity = Severity ?
« Reply #9 on: Dec 14th, 2005, 10:20pm »
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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
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Re: Longevity = Severity ?
« Reply #10 on: Dec 14th, 2005, 10:24pm »
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on Dec 14th, 2005, 8:36pm, raider_educator wrote:
I thought I had read that CH's generally last 12-15 years.

Horsehockey.
 
on Dec 14th, 2005, 8:36pm, raider_educator wrote:
Am I going to have these the rest of my life Shocked!

Plan on it, since planning is everything. Denial is beneath you, and me too.
 
Any good news is a Bonus Round plus.
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Re: Longevity = Severity ?
« Reply #11 on: Dec 15th, 2005, 1:04am »
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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"  Smiley
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Re: Longevity = Severity ?
« Reply #12 on: Dec 15th, 2005, 5:32am »
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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.
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Re: Longevity = Severity ?
« Reply #13 on: Dec 15th, 2005, 8:42am »
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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
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Re: Longevity = Severity ?
« Reply #14 on: Dec 16th, 2005, 2:31am »
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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 Huh
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BlueMeanie
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Re: Longevity = Severity ?
« Reply #15 on: Dec 16th, 2005, 8:23pm »
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Mine have been the same every cycle for as long as I can remember. No better, no worse. Always terrible.
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Re: Longevity = Severity ?
« Reply #16 on: Dec 16th, 2005, 8:45pm »
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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!
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Re: Longevity = Severity ?
« Reply #17 on: Dec 18th, 2005, 5:07am »
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Jonny......Med free!/?!
 
 
Congrats man, bout time.
 
 
Ohhh, BTW     moonwiggle
 
Love you man
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