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Topic: permanent remission? (Read 291 times) |
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chris_the_chemist
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permanent remission?
« on: Oct 14th, 2002, 9:24pm » |
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Do we have any inhabitants of these boards who are "permanently remiss" with their CH's? Just interested to hear how they disappeared. My last several cycles have been separated by increasing periods of remission ... doing the math ... by the time I'm 53 they should be gone! (Mind you I'm 28 now ...).
Interested,
Chris
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Charlie
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Re: permanent remission?
« Reply #1 on: Oct 14th, 2002, 10:54pm » |
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My last attack was in 1991. I was 45 and had them for 22 years. I'm not sure why. It may have been some anti seizure drugs for my epilepsy but I was taking nothing unusual and the timing doesn't fit. So it's been 11 years and I don't miss em at all at 56.
Welcome and keep up the good fight
Charlie
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BobG
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Re: permanent remission?
« Reply #2 on: Oct 15th, 2002, 11:05am » |
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My clusters started at about age 26. I'm 55 now.
At first I had breaks of about a year between cycles. As the years went by the breaks became longer, 2 years, 3 years.
My last full blown cycle was 4 years ago. But I still get a couple of attacks now and then. I bring them on myself when I don't pay enough attention to my sleeping/eating habits (I work a rotating shift, changing each week).
Permanent remission? I don't know. Probably have to wait for death to know for sure. Ask again in about 40 years.
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Stay stressed. Never relax. Never sleep. Ever.
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Mark C
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Re: permanent remission?
« Reply #3 on: Oct 15th, 2002, 11:42am » |
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"Natural History
There is a paucity of literature on the long-term prognosis of CH, but the available evidence suggests it is a lifelong disorder in most patients. In one study, about one-tenth of patients with ECH evolved into CCH, whereas one-third of patients with CCH transformed into ECH. An encouraging piece of information for CH sufferers is that a substantial proportion of them can expect to develop longer remission periods as they age."
From the OUCH site.
Mark
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domm
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Re: permanent remission?
« Reply #4 on: Oct 15th, 2002, 5:16pm » |
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mine started at 44 with eight weeks of hell. Two and a half yrs remission, then 16 weeks of this damn horrid condition, then off for two and a half. Third cycle and I'm now 50. I'd love to think these will go away forever.....shit, with math, this cycle should last 32 weeks. Give me some of that new math 
domm
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jonny
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Started chronic at 14 and still am at 40, like BobG said death will tell when you are in permenant remission.
...........................jonny
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Linda_Howell
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Re: permanent remission?
« Reply #6 on: Oct 15th, 2002, 6:45pm » |
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No Jonny,
You're 39 and 400+ days.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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jonny
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I LOVE YOU, LINDA ;D
.........................jonny
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DonC
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I have had CH's for 41 years.....age 22 to 63, but the last 11 years have been in remission. I am here because they came back 13 days ago on Oct. 2, 2002. I thought I had outgrown them and really forgot about them until they came back. So, I vote for "no such thing as permanent remission". The good thing, however, is that there is an internet site like this now that I can get information, guidance, advice, etc. from. This is a great help for all of us, and especially new sufferers or those of us who come back to this world of CH.
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Jim R
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Re: permanent remission?
« Reply #9 on: Oct 15th, 2002, 7:33pm » |
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Chris,
Started at 23 and now I'm 47 and still waiting for the ultimate remission (jealous of you Ch!arlie!!) Had a long remission on verap. alone, but the friggin beast found a way around it. Good luck. - Jim R
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gtar_man
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Re: permanent remission?
« Reply #10 on: Oct 15th, 2002, 8:32pm » |
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Damn, DonC, hated to hear your story. Seems like after 11 years you could kiss the mo-fo goodbye.
Mine started 5 years ago at age 47; 6 months duration, then 4 years off, cranking back up May '01 and staying.
Remission may be the most beautiful word in the English language. Wish I had 100 tons of it to pass around to everybody here...
Mike
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Jabeen
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Re: permanent remission?
« Reply #11 on: Oct 16th, 2002, 10:06pm » |
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My story is very similar to Mikes. They started when I was 46 out of nowhere. Had no idea what I had and took a while to find out. They stayed about 9 months, then went away for 5 years. Now they are back-but the meds that worked last time blessedly worked this time and the attacks are few, far between and very manageable. I will stay on medication for months and then try to wean off and see if they are gone-
I had cautious optimism after 5 years (and only having had 1 other cycle) that it was a fluke and was gone forever...no such luck.
Jabeen 
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Donna
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Re: permanent remission?
« Reply #12 on: Oct 17th, 2002, 6:51am » |
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I had cluster headaches for 28 years, cycled twice per year and they lasted about 6 weeks each time.
They stopped cold in 1986 and I've been cluster free ever since.
My 31 year old son has had them since he was 17.
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ChristineL
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Re: permanent remission?
« Reply #13 on: Oct 17th, 2002, 7:22am » |
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Hi Chris,
I started them when I was 26 and was at first episodic and then became.chronic. I went into remission for 12 years and they came back this past July out of the blue. I am now 51.
Hope this helps.
Chris L
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