Posted by matt (195.121.180.83) on November 14, 1999 at 07:41:34:
Yesterday I went to the annual meeting of CH patients
in Holland. It was a meeting of a subgroup of the Dutch national headache and migraine foundation.
It was strange for me, because i havent met other ch patients before and now i was in a room with about 80 of us!
There was legal info about Clusters and (how to keep your) work and a neurologist told his stories and xperiences with CH patients.
Most remarkable for me was to see and hear the frustrations of the people about what went wrong with treatments and misunderstandings about clusterheadaches (i think we all can tell hours about these things)and to see how many patients are tobacco smokers. (yes here we go again)
Really i never saw a so high percentage smokers in a group of people.
I am happy I went because for the first time i could talk to people who understand the difficulties about living with Cluster headaches and the effects it has on your life. And to see that I am not the only one with this bizarre pain is , in a kind of way, also a relief.
wishing you best
Matt