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Posted by Carl D ( on March 28, 2001 at 05:09:38:

In Reply to: Life with clusters, why I back OUCH! posted by Elaine on March 27, 2001 at 09:05:30:

First off, thank you Elaine, Paula and Riccardo for sharing your stories... and encouraging a moron like me to share mine...

When I was 17, I was a wildcat teen, had been playing guitar for 7 years, and was quite good by this time; playing in various bands, partying till dawn, just having fun. Around September 1987, I started getting these pains, I wasn't even sure I could call them headaches. It just felt like my eye had an ice cube melting on it. It hurt like hell, probably a 4 or 5 on the K scale. I got one maybe every few days or so, but then, around November, they went away.

In 1988, They started again, a little stronger. I remember it was right before summer started, and I would get one every couple of days, it would last about 20 minutes or so. They went away, and came back a year later - even stronger.

It seemed each time they went away and came back, they were worse. My mother had taken me to the doctor, and he quickly labeled them as "Classic Cluster Headaches" and said that they were "A bear to treat sometimes." I was very fortunate to have the GP I still have to this day. I believe it was around December of '90 that they had got so bad, they did a Catscan to rule out a possibility of a tumor, and was put on Propanolol and Indomethacin.
I seem to forget how '91 and '92 went, though I know I did have an episode or two there. The next significant episode would be the one to top them all.
My mother died on our birthday (yes, I was her present back in '70), in April of '93. I was devastated. Then a month later, a friend of mine shot himself. Another month went by, and then WHAM! Like a ton of bricks, they began without warning. It had reached an all time high, and I found myself despondent, suicidal, making trips to the ER thinking I was dying, and so forth. At one point, had loaded my fathers old 357 with hollow point bullets, but could not bring myself to pull the trigger. I hated myself so much for not being able to have the guts to do it. I eventually lost my job, my car... and it seemed there was no hope.
In January 1994, I received a job offer in Michigan. Realizing I had nothing to lose, I took the job and was MI bound in April of '94. The CH's were on and off again, but even worse. Finally, in October of '94, I mustered up the courage, and attempted suicide, but failed. The next day, I was taken to the emergency psyche ward where they got to the root of my problem. They aksed me, "If you could get rid of these Headaches (I hate that word), would you still want to die?" My response? "Duh, no!"
Finally, I started going to the MHNI (Michigan Head-pain and Neurological clinic), where I was put on Verapamil, Lithium, and o2. These remained quite effective for a time, but were not fullproof. At the end of '95, I moved back to Illinois. Around Feb or March '96, I began to get 'occasional attacks', maybe 1 - 3 a week. That was okay in my book. I was kept on the Verapamil though, as they had pulled me off of the lithium early on due to very bad side effects.
Around August of '97, they began to creep up again. I would get 3 - 4 attacks a week, and unfortunately got them at very inconvenient times, and lost a couple of very good jobs as a result.
Then in February of 1998, it happened! I was in full blown cycle again. 4-6 attacks a day. The Verapamil became ineffective. It wasn't until May that I got bad enough I could not even hold down a job, much less even go out job hunting. I became pretty much homebound with the fear that the next attack was just around the corner.
Since February of 1998, I have become what is known as "chronic". I get them all the time now. I have tried boatloads of different meds, some with very nasty side effects - but have yet to find anything that keeps them under control. Things that used to work are no longer effective. o2 doesn't even touch them anymore. Nothing works. Now I am forced to just ride them out, and occasionally pray for death.
They are now at the point I can blackout momentarily during an attack, or pass out momentarily. I have also lost bodily function, and a couple of times done things while unconscious during an attack, and have no idea what I have done. I even broke my thumb last July by pounding on the floor too hard during a 10er, and brought my hand down at the wrong angle, and snapped it. I didn't even realize that it was broken until after I came out of the attack. I thought maybe I just jammed it, but no.
It is now March 2001, and there is no end nor relief in sight. I am sick to death of the public and professional ignorance of CH. I am sick of constantly having to go "Doc Shopping" to find someone who understands and can help me. I am sick to bleeding death of a system that does not see human beings, just numbers. I am currently writing a book which is a fictional account of someone having thier life ripped apart by CH; but at times even wonder if it will make it into the public eye. I have been so frustrated as of late, I do not even know why I press on anymore. All I know is I do, and I live to fight again for another day. Now if only I could sleep...

Peace, and don't be afraid to share your story as well. Everybody has one. Lets hear yours.

Support O.U.C.H.
Carl Daniels

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