Posted by Keith (134.163.248.126) on April 03, 2001 at 15:29:05:
I've been getting episodic clusters for 34 years now - about one episode per year, lasting 1-3 months, usually one CH per day. (I guess that makes about 2000 CH's). I've found two things in the past few years that seem to make them more manageable.
1) For about the last ten years, I've been taking Norgesic Forte (a mild muscle relaxer plus aspirin and caffeine). It works only if I take it IMMEDIATELY at the first inkling of pain (i.e., a 1 or 2). If I wait until it is a 3 or 4, it doesn't do any good. Except for one episode three years ago - where every CH seemed to be a 9+ - it has worked to shorten the duration to 10-15 minutes and reduce the peak pain to a 5 or 6.
2) When a CH comes during sleep, I don't wake up until it is way too late for the medicine to help. To avoid this, I sleep in a reclining chair rather than a bed until the cycle is over.
I've seen many doctors, and tried nearly everything mentioned in the various CH web sites - except oxygen - with no real success. I don't know if this will help anyone else, but it seems to work for me.
I've never met another "clusterhead", but it is really awesome, and somehow comforting, to read about so many others who have had the same kind of pain. I sympathize with all of you very much, especially those with chronic CH...