Posted by alec (24.163.11.138) on November 01, 2000 at 23:30:33:
My name is Alec, and I just loggged on to this site for the first time today. I've been sitting here in pretty much total shock, not being able to comprehend that there is actually a place to go to find such comfort just knowing I'm not alone. I haven't had a cluster in a little over 5 years now; before not more than 3 passed before a new one started. I know I'm real lucky to have made it this far, but I'm sure you all know what I mean when I say that not a week passes that I don't wonder when the next cycle will begin. They started for me when I was 20, in the middle of the night, and soon after the first one, I was in the emergency room. Thank God they referred me to a great neurologist who diagnosed me right away as a CH sufferer. He put me on Sansert, which broke that cycle immediately, so I would recommend that drug highly to anyone who hasn't tried it. However 2 1/2 years later, it had no effect when we tried it again. My drug of choice since then has been prednisone, which, if taken in high enough doses, blocks the headaches completely until the cycle ends. The real problem with that is that one doesn't know when that happens, so the dosage has to be slowly decreased to see if the cycle has indeed come to an end. That's a very scary time for me. Another problem with prednisone is the weight gain I experience every time I have to go on it. Has that been a problem for anyone else out there? I typically gain 20-30 pounds in the two months I have to stay on it (usually around 80 milligrams a day). Sometimes, after a cluster ends, I'm left with a nagging headache in the same spot as the cluster that just doesn't want to go away. The Doc put me on Elavil for that the last time I had a bout, and it worked pretty good. Anyone else had that kind of symptom? I've tried the herbal stuff, which did NO good for me, and pain killers like percodan just don't seem to be able to work quick enough to stop the pain before it gets to full force. Trying to take two at a time just made me sick on my stomach. I haven't tried anything like imitrex because it wasn't available when I had my last cluster, but I thought it was more for regular migraines than clusters; any thoughts? Are there any other new drugs available that were invented purely for cluster headaches? I'm sorry this message was so long- it's been a long time coming, let me tell you. Thank you, EVERYONE OF YOU, for sharing your experiences. I really feel that the next cluster (if there is to be another, God forbid) will be a little easier to live through, just knowing there are others out there who know what it's like. Thanks again, Alec