My experience

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Posted by Mitch on November 12, 2001 at 20:23:52:

Great to see this site.

For what it is worth, I will share my experience. I have what must be "classic cluster." I am male, with onset at age 29. During a typical period, I will have the headache once daily, usually to be woken up in the early dawn hours. The pain is excruciating in a way that only cluster sufferers can understand.

I was fortunate to have good doctors who took my complaints seriously - actually, after my first attack they were so concerned that they wanted to check me out for a possible aneurism. I went through every imaginable test, and cluster was finally diagnosed more through the process of elimination than anything else.

Once diagnosis occurred, I was prescribed a treatment which has worked for me ever since.

At onset - which usually comes with no warning whatsoever - I take a Fiorinal, or Fiorinal with Codeine, immediately. I then wait out the first headache as best as I can. (I always have Fiorinal with me). Then, starting that same day, I begin a treatment of Verapamil, with a gradually declining dose over a period of 30 days. During that time, I do not even THINK of drinking alcohol, or else I might trigger a resumption of the cycle.

I have found this treatment to work very well over the past 14 years. I suffer from an attack about once every 2-3 years, but I can immediately manage it.

From my experience, having a system that works is half the battle. I accept the fact that I may have to live through a first attack. But knowing that I can abort subsequent attacks is extremely comforting.

I would be please to provide more info about my experiences or this approach, if desired.

There ARE ways to manage cluster headaches and survive. Don't despair.

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