Posted by irene on September 30, 1998 at 08:47:20:
In Reply to: Chronic Paroxysmal Hemicrania (CPH) posted by Nancy on September 29, 1998 at 11:37:16:
Good Morning,
I was diagnosed with chronic clusters and now have been told at Mayo that I may have a variant of CPH. CPH is "supposedly" indomethician responsive.... does not respond to much else typically. I have improved markedly with Indomethician in high doses but have not cleared 100%. I am ecstatic with any improvement after a year in hell.
After substantial research, I have read that some folks (rare) do not respond well or tolerate indomethician. Verapamil and Feldene help in some cases. Also, oxygen helps only SOME people with CPH, not consistently. Initially, I did experience some relief with O2 but soon I did not have any luck.
I've been told that CPH is even rarer than clusters. (We all need HELP!) If anyone has any first hand experience, please let us know.
Best of luck to you,
irene