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Posted by Joe M ( on January 15, 2000 at 18:41:19:

In Reply to: Butalbitol as possible relief posted by Patrick McGrath on January 14, 2000 at 22:53:32:

This is my first time posting and I don't want to preach, but I feel it necessary to respond. I have had clusters for 24 years. I first visited an internest who didn't know a cluster from his left foot who prescribed Fiorinal. I don't know if anybody has mentioned it to you, but Fiorinal is addictive. Clusters, generally speaking, are over before the drug even has an opportunity to dull the pain. Consequently, one tends to take more. I was finally taking them by the hand full. In the whole scheme of things, they aren't extremely helpful, but when you get to the addiction level you start personality changes - usually mean ones. About the time my wife was going to divorce me I went to see the Dean of Neurology at a very prominent US medical school. His view was that I had clusters and Fiorinal was worthless for clusters. That is when I started on ergotamine. I have been taking ergotamine (now caffergot) everyday for 26 years. I have had many career relocations so I have visited neurologists all over the US. I have tried enumberable drugs. For the past fourteen years I have taken 3 caffergot and 3 librium every day. Currently I am trying Norvasc as a new remedy - but it doesn't look promising. My neurologist is also one of my closest friends - he tells me all the longterm caffergot useage is probably going to cause my heart to seize one day. (Smoke, some drinking, slightly overweight, no exercise, 47 years old) (quit smoking for 18 months once, no change in headaches). The doctor and I discussed the use of Sumatriptin (probably spelled wrong but you get the point) but he said there were too many people with my profile that the drug caused immediate heart attacks with. The drugs don't make me headache free, it just tones them down and makes them less frequent. When I get in a really bad cycle, the ones where you get no sleep, I use a large dose cycle of prednisone. It usually works if I don't use it more than about twice a year or so. For day to day headache relief, I use oxygen. It will usually knock out a headache in 5 to 10 minutes. I have a full size tank at home and small ones to use at the office, car or travel. I am very fortunate that I travel in private aircraft, better chance of getting a gun on commercial aircraft than your oxygen tank. One more wierd remedy that drives my wife crazy, when I don't have oxygen available, chewing Kleenex seems to help. I suppose I never feel any more stupid looking than when I am in an important meeting and I have a thumb gouging my temples, tears rolling from my left eye, head cocked to the shoulder and a wad of Kleenex in my mouth and chewing it. The deamon has certainly affected my life, but I refuse to let it rule it. I have been a corporate president and hold one of the highest positions in state government. I have even had meetings with my closest staff while I sat there with the end of an oxygen tube in my mouth (by the way, no mask or nose tube, just cut off the end of the hose, stick it in your mouth and turn it up about as high as it will go). Well, that is my story. Thanks for listening to me be long winded, but I don't think anybody else would care like you all might. We all do what we have to do to beat the deamon, just be careful with the Fiorinal, it has the potential for being just as nasty.

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