Posted by Judith Mosley (207.175.140.81) on August 09, 1999 at 21:30:34:
I just found this website last night, and burst into tears. I have been a CH sufferer for 24 years, and right now after my longest break ever (2years) and back in the swing of things and in my 2nd month!!I have about another month to go, but just wanted to get on the board quickly with a couple of things that may help people. I apologise if it has already been covered, but I have only been able to check about 12 or so of the other postings, just to get the feel of what other people had to say.
I am one of the few that oxygen doesn't work for, in fact I get rebound headaches from it. I was a test patient for Imitrex before it hit the market, and thought I'd died and gone to heaven.What worked best for me,was 125mgs
of amitryptaline (Elavil), which knocked the CH down from 2 a day to four a week, and I would have the Imitrex injections for the breakthroughs. I now have four kids, and can no longer take amatryptaline, as it would take me at least 2 hours to get out of bed in the morning, and then I would function of 1/4 power for the rest of the day. But it beat having headaches....it may work for someone.
I cannot believe that there are some of you out there, that cannot get imitrex from your Doctor. I shopped around until I found one who give it to me. Now that I live out in the Pacific
(not the medical center of the world),I went to the Dr.
I knew my condition better than anyone else, and I need 30 50mg tablets, 15 nasal sprays, and 8 injections. I was polite, but determined, and I got what I need to get me through the next three months. I must have been fortunate, because all of the Drs. I have seen have been very understanding and accomodating.
If I ever win the lottery, and buy you all a years supply of Imitrex.....nobody who suffers from CH should have to suffer the pain and lonliness that they bring with them.
Thanks for the wonderful site, and I hope my addition can be some help.
Sincerely..........Judi