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Topic: Are CH's a lifelong disorder? (Read 461 times) |
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maria9
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Are CH's a lifelong disorder?
« on: Sep 16th, 2003, 4:48pm » |
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This question frequently comes up on the board here. The following study (while old) actually addresses this question, sorry to be the bearer of bad news. Maria
Cephalalgia
Volume 11 Issue 4 Page 169 - September 1991
doi:10.1046/j.1468-2982.1991.1104169.x
Cluster headache course over ten years in 189 patients
Gian Camillo Manzoni1, Giuseppe Micieli2, Franco Granella1, Cristina Tassorelli2, Carla Zanferrari1, Anna Cavallini2
One-hundred-and-eighty-nine cluster headache patients, referred to Parma and Pavia Headache Centres between 1976 and 1986 with a disease duration of over 10 years, were interviewed about the course of cluster headache. They were classified as episodic (n = 140) or chronic (n = 49) cluster headache patients on the basis of course during the year of onset. Episodic patients showed the following outcome: maintenance of an episodic form (primary episodic form) in 80.7% of cases, shift towards a chronic form (secondary chronic form) in 12.9% and shift towards an intermediate pattern ("combined" form) in 6.4%. In chronic patients, cluster headache was still chronic (primary chronic form) at the moment of observation in 52.4% of cases, while it turned into an episodic form ("secondary" episodic form) in 32.6% and into a "combined" form in 14.3%. Nineteen patients (10%) had had no attacks for at least three years at the moment of examination. We can conclude from our data that: cluster headache is a disease of long duration, perhaps lifelong; episodic cluster headache tends to worsen; chronic cluster headache may easily turn into a better prognostic episodic form; prophylactic drugs are unable to induce recovery. The following factors seem related to a poor outcome: a later onset, the male gender and a disease duration of over 20 years for the episodic forms.
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dougW
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Re: Are CH's a lifelong disorder?
« Reply #1 on: Sep 16th, 2003, 9:32pm » |
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Thanks
Strike 1: "We can conclude from our data that: cluster headache is a disease of long duration, perhaps lifelong; episodic cluster headache tends to worsen"
Strike 2: "The following factors seem related to a poor outcome: a later onset, the male gender and a disease duration of over 20 years for the episodic forms"
Strike 3: after 18 months remission, they're back bigger and better than ever,
Damn, ruined my day 
LOL on my way to the oxygen tank.
Doug Wright
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Mark C
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Onward through the fog.
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Re: Are CH's a lifelong disorder?
« Reply #2 on: Sep 17th, 2003, 2:11am » |
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I have had one or more cycles a year since I was 13. I will be 42 soon...seems like a long time to me. I do know of two folks who haven't had an attack in years, Charlie is one, and a fellow I work with used to get hammered before his 50's...so maybe in a few years I might be finished!
Hanging on....
Mark
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TxBasslady
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Re: Are CH's a lifelong disorder?
« Reply #3 on: Sep 17th, 2003, 7:34am » |
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Wow, Mark....29 years ???
Guess this is what really flabbergast me. Everyone being so different, and the "beast" being able to hang on to each of us in his own way.
I am female, 56, and had my 1st CH in January of 2002. I had 2 ha's in 2 days....bout scared the hell outta me. Never in my life have I had a ha like that. I was at our lakehouse, alone, and was awaken with pain that I have never felt before. Scared me so bad, that I stumbled around to find pen and paper , wrote a note to my husband, and children....I honestly thought I would not make it thru the nite.
Had maybe 1/2 dozen or so ha's after that over time, but went into a full cycle in Aug of this year.
Can't remember many times in my life that I was really scared. There is truly a fear factor here for me. Maybe because I don't understand it. Why does it happen to those of us that get it? I am extremely active, but this shit has all but made me a prisoner in my own home. During my cycle, I was scared to leave home, scared to be alone, afraid that my children (who are all grown), would think I had lost my ever lovin' mind. And my grandchildren.......I love them dearly, but was so afraid of having an "attack" while they were here overnight. It's a hard thing to deal with for me.
How much difference does age or gender make? I don't think anyone really knows. Nor can anyone explain, why some stay pf and others suffer on a daily basis. It would just be nice if we had the answers. There is great fear in the "unknown."
Sending lotz of pf vibes your way........ ;D
Jean
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maria9
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Re: Are CH's a lifelong disorder?
« Reply #4 on: Sep 17th, 2003, 12:42pm » |
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DougW: sorry to hear your cycle started again 
DougW and Marc C: you are both due a remission period according to the study since I believe both of you started your CH's as teenagers (early onset). In my case the CH's started at 16 years of age with yearly cycles for 22 years. Over the last eight years I only have had one cycle. I'm not sure if I'm out of the woods yet with these things. I remember someone on this board going 10-11 years without them before they came back with a vengeance.
Jean: sorry to hear this horror has hit you in your 50's. From what I've read about these CH's and the age of onset, men's age of onset peaks in the third decade of life while women's age of onset peaks both in the second decade of life and the fifth decade of life. Also the proportion of men vs. women diagnosed after 50 is about equal while men outnumber women diagnosed at younger ages.
Another little interesting tidbit, is that there are actually people out there who only have one cycle of cluster headaches and they never return. I have read of this in the literature and met someone recently whose husband had a cluster headache cycle 10 years ago and they never returned.
I agree with you Jean, there has got to be an answer to this or a cure out there that is legal and readily available. Another reason to join OUCH and get more publicity out there about this rare and poorly understood disease.
Maria
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"All you have to do is the best you can. A high wave comes, a crashing wave comes, a gentle swell follows. Whatever comes, stay in your boat. And enjoy the ride. And row." Peggy Noonan
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