Posted by Bob P on May 26, 1999 at 13:02:40:
In Reply to: We ALL need help here, Bobby! posted by Margi on May 26, 1999 at 12:33:34:
Guess I've just been lucky in my CH treatments. 30 years ago when my CH started, the first cluster was diagnosed migrains but by the second cluster I got the CH diagnosis. Since then when I make an appointment to see a Dr. the receptionist always asks what the problem is. I always answer, cluster headaches. I once called for an appointment at the beginning of a cluster, the lady said the first opening the Dr. had was in 10 days. I told her I couldn't wait because I had CH. She put me on hold, came back a moment later and said come in right now, the Dr. will see you. I don't know how to get that to happen for all of us other than don't leave the diagnosis up to the doctor. Tell them you have CH and ask what they can do to treat it.
Unfortunately this brings up the guinea pig syndrome. This board has shown that different treatments work for different people. All you can do is run the gauntlet of drugs till you find the right combination. I think the Dr.'s know this and that's why they are so noncommital about cures. Even the first neuro that I saw, perscribed Sansert, said we don't know how it works, we just know it works so take it.
Maybe I've just been lucky and haven't run into the Dr. that poopoo's CH.
Good luck to all in the search.
Bob P