Posted by Bennie Sue (63.16.4.124) on March 16, 2000 at 16:03:30:
In Reply to: Read this reply.... posted by Preston on March 16, 2000 at 15:49:18:
but those people are actually pretty dumb. Whoever answered your letter didn't even pay any attention to what you wrote or bother to research it. Some letter-answering person probably shouted across the room,"Anybody ever heard of cluster headache?" Somebody probably shouted back, "Yeah, it's kinda like migraine, not real common."
That's why O.U.C.H. is so important.
Once I asked for a survey on the board of a better name for CH. I got several suggestions, but the best was probably just CH. If people were as familiar with CH as they are with MS we wouldn't have a problem with making our story known.
You are great to take the time to send all those emails. Don't get discouraged - we're working on it, and these things take time.
One consolation - CH is not common. At least I can be happy for those who have never had to deal with the "most terrible pain known to man."