Posted by Cate Roberts on August 05, 1998 at 13:03:41:
I am a white female, 45 years old, who first experienced CH at ~21, and finally properly diagnosed at ~25. Saw the same neurologist in Chicago for 15+ years who treated me successfully with Prednisone, but finally had a stop prescribing because of its dangers. My CHs would last a total of 6 weeks; 2 weeks of building up intensity, 2 weeks of agonizing pain; then 2 weeks of decrease until stopping. Doctor told me "as mysteriously as CH appears in mid-20s, they usually just as mysteriously disappear in mid-50s", which gave me a new outlook on growing older! My CHs were usually associated with stress, but I think alcohol may be a trigger as well. I am not a heavy drinker, but 3-4 beers can throw me into a cluster. I cannot drink wine (especially red), champagne is a big no-no, and any kind of cola can get me into trouble. I have now cut out alcohol, caffeine and am slated to start Zyban for smoking cessation shortly. My move to Texas triggered my last CH ~3 years ago. The neurologist I was seeing here in Houston put me on Indocin, which seemed to do the trick, as long as I took it every day. Recently, I switched neurologists and I decided to try getting off my medication and going it drug-free. That turned out to be a big mistake and now I'm in trouble again. New doc prescribed Verapamil, which made me sick. Was put on Sansert and Indocin, but had a reaction, so now only taking Sansert with not much relief. I, too, have tried just about drug treatment plus H2O with Prednisone being most successful. My new doc seems unwilling to prescribe it now, and I'm beginning to think she views me as a hypochondriac as well as a pest. I feel there is a connection between my CHs and hormones as I was pain-free during both my 2 pregnancies, with onset of CHs within a few weeks after delivery. My OB/GYN recently put me on hormone therapy, but neurologist recommended I stop that until current cluster is broken. My best advice to anyone suffering out there - see a top-notch NEUROLOGIST. GPs don't know enough about CHs and will only waste time and money "playing around" with drugs and tests. Has anyone tried ACUPUNCTURE? What about YOGA? My best wishes for you all. Keep your heads up.