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        New Message Board Archives >> 2002 Posts >> permanent remission?
        
(Message started by: chris_the_chemist on Oct 14^th, 2002, 9:24pm)

Title: permanent remission?
Post by chris_the_chemist on Oct 14^th, 2002, 9:24pm

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

Title: Re: permanent remission?
Post by Charlie on Oct 14^th, 2002, 10:54pm

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

Title: Re: permanent remission?
Post by BobG on Oct 15^th, 2002, 11:05am

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.

Title: Re: permanent remission?
Post by Mark C on Oct 15^th, 2002, 11:42am

"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

Title: Re: permanent remission?
Post by domm on Oct 15^th, 2002, 5:16pm

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 :D
domm

Title: Re: permanent remission?
Post by jonny on Oct 15^th, 2002, 6:23pm

Started chronic at 14 and still am at 40, like BobG said death will tell when you are in permenant remission.

...........................jonny

Title: Re: permanent remission?
Post by Linda_Howell on Oct 15^th, 2002, 6:45pm

No Jonny,

You're 39 and 400+ days.

Linda

Title: Re: permanent remission?
Post by jonny on Oct 15^th, 2002, 6:58pm

I LOVE YOU, LINDA ;D

.........................jonny

Title: Re: permanent remission?
Post by DonC on Oct 15^th, 2002, 7:32pm

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.

Title: Re: permanent remission?
Post by Jim R on Oct 15^th, 2002, 7:33pm

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

Title: Re: permanent remission?
Post by gtar_man on Oct 15^th, 2002, 8:32pm

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

Title: Re: permanent remission?
Post by Jabeen on Oct 16^th, 2002, 10:06pm

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 :) :) :)

Title: Re: permanent remission?
Post by Donna on Oct 17^th, 2002, 6:51am

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.

Title: Re: permanent remission?
Post by ChristineL on Oct 17^th, 2002, 7:22am

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