Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2003 Posts >> Question for long time sufferers ??
        
(Message started by: Kasey4 on Jun 16^th, 2003, 6:24am)

Title: Question for long time sufferers ??
Post by Kasey4 on Jun 16^th, 2003, 6:24am

Hi - I had to register because I lost my "cookies" and couldn't remember my password ::) but I have posted here in the past.

I am wondering if any of the long time sufferers (not chronic - although OMG, I don't know how you can deal with being chronic, I would kill myself, I really think I would - God bless you); Anyway - to those of you who have suffered 10 years or more, have you experienced major changes in your cycles? Amount of time between, length of cycle, severity of pain, and number of CH's? I am trying to get a handle on what the future may hold for me by your responses.

I have been a Clusterhead for 25 years. For me, I had cycles every 11 months for the first 10 years or so. One CH a day and a cycle length of about 6 weeks. Then they went to every 13 months for a few years and then to every 15 months for awhile but the cycles became longer - between 8 and 9 weeks. I had 2 cycles that were 18 months apart, lasting 10 weeks. My last cycle was in spring of 2000 and it lasted alittle over 11 weeks. 3 years and I thought, Thank God, they're gone!! But of course they weren't and I am in week 8 of a cycle right now (with an average of 3-6 CH's in 24 hours). I have no idea how long it's going to last. It seems the longer I go between cycles, the longer the cycles are. Is that the same for others? Also, I never experienced low Kip scale CH's before and shadows that last a better part of the day until this cycle. I am still getting 9's and 10's but also 2 or 3 "minor" CHs during the day - is anyone else experiencing a change like that?

Sorry this is convulted - I'm trying to make sense but lately I have a hard time with that since my head is so clusterf*cked.

Thanks for your information :)

Title: Re: Question for long time sufferers ??
Post by Mastifflvr28 on Jun 16^th, 2003, 12:26pm

Welcome back Kasey,
My cycles have been a lot like yours. For about 16 years now...in the beginning, once every 11 months for 2 weeks. Then 4 years ago they jumped to 3 months, then last year 4 months...and this year? I hope I don't jinx myself, but I'm about 3 months OVER DUE to start a cycle.

From what I've learned here and experienced is there are NO SET RULES with the beast.

Sorry,
Hope your feeling better soon,
Mast

Title: Re: Question for long time sufferers ??
Post by KingOfPain on Jun 16^th, 2003, 1:07pm

WB Kasey4

So sorry the bast*rd is f'n with ya.

Mine (epi CH) have gotten worse in: severity, duration, intensity, # of attacks, & resistant to med approaches the longer I have had them & the older I get.

Been dealing with CH for over 20 years now.

Really bad the last 6 years.

Does that answer your question?

Sorry, but it is the reality of my CH anyway.

Hope this helps.

KingOfPain

Title: Re: Question for long time sufferers ??
Post by Live4Fun on Jun 16^th, 2003, 1:10pm

I have been a clusterhead for 10 years. I have noticed the length of my cycle grows about a week each time and the intensity of the headaches gets much worse every cycle. :-/

Bryan

Title: Re: Question for long time sufferers ??
Post by suzy617 on Jun 16^th, 2003, 1:22pm

I've had CH for 22 years now and get it once a year for 6-8 weeks. That has not changed over the years but I must say last cycle was by far, the very worst I've ever had. :(

suzy

Title: Re: Question for long time sufferers ??
Post by Brian_Y on Jun 16^th, 2003, 2:33pm

Been one since 1985. I have noticed that the episodes tend to be farther apart, but that the episodes themselves will last longer than they did in my "youth".

I attack them mercilessly these days and did little to nothing back in the days of yore, largely due to them being misunderstood. So, it is a paradox.

Anyhoo, longer bursts, but every two years or so nowadays...

I hope this helps you. Unfortunately, there are so few "patterns"....

Title: Re: Question for long time sufferers ??
Post by Mark C on Jun 16^th, 2003, 2:55pm

Started when I was about 13, suddenly and violently. Several cycles a year each lasting 1.5 - 3 months each and continued through my 20's, hammered a couple of times a year. Being mis-diagnosed at the time made it even more miserable. My 30's they seemed to calm down both in intensity and duration.....till last year. I got hit about August of last year and it was bad...real bad. The worst both in severity, frequency and duration. I am still shadowing to this day and in the past I never shadowed between cycles. Am I becoming chronic? God I hope not.

I think the pattern is there is no pattern...good luck on you quest.

PFDAN's
Mark

Title: Re: Question for long time sufferers ??
Post by Kasey4 on Jun 16^th, 2003, 4:00pm

I sure as hell hope you are not going chronic, too - I can't imagine anything worse in the world.

Thanks for your responses everyone. It was just as I was afraid ;) no method to the madness!!