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Posted by Renee Johnson ( on February 17, 2000 at 14:45:26:

I just left the "guest book" on this site- made a fool of myself misspelling and then asking to be forgiven. This is my first day to visit this site and I couldn't believe it when I happened upon it by mistake! I have suffered for 22 yrs. from clusters and also have a brother that does too! BUT, we found help and don't suffer anymore! I put in the guest book that I don't understand why my brother and I have gotten help and no one else seems to have gotten much. Of course I haven't read enough post to really know that. I do see that a lot of you are still suffering. Here is a little about myself and what works. Five yrs. ago I went to a neurologist at Vanderbilt hospital and it CHANGED my life! My doctor put me on 6 tablets of verapamil (also known as calan) a day. Each tablet is 80mg. If I take my medicine like I'm suppose to, I DON'T have ANY headaches! My brother takes 8 tablets-80mg a day. He hasn't had a headache since the day I took him to see my doctor. The doctor that he was going to had him on 1 250mg a day-time released. It didn't do a thing for him. He has been to the emergency room several times and sent home with oxygen, which didn't touch it! We have found, like I'm sure most of you have, that most doctors don't know enough or anything about clusters. My doctor thinks that most doctors are afraid to put someone on this much verapamil. I have been taking it for 5 yrs. this way. My brother has for 2 now. We are doing GREAT! It seems like if this works for the two of us that surely it could work for others. Has ANYONE out ther ever tried this much verapamil? Seems like this web site doesn't even need to "BE" if more doctors knew more about this. I'm so frustrated that I am no longer suffering and most of you guys are!!! Keep going to doctors until you find one that will listen to you and help. I never gave up AND took my brother to MY doctor because his wouldn't listen. My wish is that EVERYONE that reads this will get help. Don't give up! renee

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