Posted by Joe Cavazos (209.196.109.110) on May 30, 2000 at 00:44:31:
Thought you might find this interesting. Here is my responce (email) to a person doing a documentary in the United Kingdom on pain. It was a request(in the questbook section) for what we as sufferes would like to see conveyed to the public about our condition...Tell me what you think.
If there is one thing I would like to see conveyed to the public, it is this: I have an indention, almost like a hole, on the back,right side of my skull....from the 20some years of pressing and banging the same spot on my head during the CH. This is how bad it is...that the pain of banging my head is a "relief" in some sort of way. Nothing else exists during the one or two hours of pain. I hope that in your documentary a sense of MAGNITUDE is made clear.
....I really hate it when someone asks me where I was the last hour, and I say I needed to be alone with my headache...and they say in return "Yea, I get headaches sometimes, I hate them..."
I instantly think to myself "Oh really?...YOU have no %$@#!ing IDEA what pain is....."
Just FYI: I started getting mine in 4th grade (8 years old) ...they started chronic, and in the last 8 years have become episodic...So feel free to email me if you have any questions, as I feel I am well qualified to describe this predicament. In closing, thank you so much for your effort...It brings a little joy to me knowing that in the last couple years or so, there has been more attention finally given to this condition, and hope that this attention will some day spawn more research, and a cure, for I wish this hell upon no one.
Joe Cavazos
Houston, Tx. 77034
U.S.A.