Posted by Dick R (18.104.22.168) on March 26, 2000 at 11:00:56:
I have followed the threads on this site for a year now. I have engaged in one discussion regarding UV lights. At the time of that discussion, I felt the lights were the answer and they were for 2 1/2 years. Then the devil returned in Nov 99 and is getting worse by the day. But I thank Paul Borneo from the depths of my soul for the time those lights gave me. Never had I gone that long without a cycle.
After 27 hears you would think I would know better than to have hope. (smile)
The point of this post: This site is the ONLY place for CH sufferers that provides comfort and information. The comfort is genuine and the information is priceless.
Going year to year enduring the cycles, the one thing that is constant is the inconsistency of the attack and how it develops. The pain result of the CH is the same for all, but the attack and duration can be entirely different for each individual. After about the fifth year none of my cycles have been "normal" given the "experts" description of a CH. My bad episodes are coming every other day. The last two going 5 1/2 and 5 hours respectively. Now, the peak lasted a little over 2 hours, but I don't consider just being able to lie down and not moving a "shadow". When you can't sleep from the pain, that is a cluster.
So... If you don't agree with someone's description of the CH or their terminology, ask yourself.. "do I really know". With all of the research I have done on these damn things, I have discovered I don't know the answer. Sadly no one else does either. But I SURE know what that CH sufferer is going through. The main thing to do is just keep the information flow going.
Keep this the best site for the CH'er...
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