Posted by Tony S (24.218.50.253) on May 18, 2001 at 23:46:46:
I have to get this off my chest...
I'm in the seventh week of a cycle (and thankfully the
beast is showing signs of giving up). I've been lurking
here much of that time reading through posts. A few days
ago I read a post that piqued my interest because it
was similar to my condition. It was from a Janie, she
was asking if others experienced "m-word" headaches
during or after a cluster cycle, and if it was an indication
of the Cluster returning. Immediatly she was chased from the
board, and the general consensus here seems to be that
we must never ever ever utter the m-word here.
It blows my mind that I have to sort through many, non-cluster
posts about the origin of grapefruit, and post links to
"f*ckgeneralmotors.com" to find useful information,
and that people here can openly discuss ILLEGAL
mushroom treatments, but I cannot make references to m-word headaches
without getting asked to go elsewhere.
The standard response is go to "headachesupportgroups.com"
I have a few problems with this:
1) I do not need support for my m-word headaches. They
are thankfully not very severe (anymore). I only wish to discuss
them in the context of being a cluster headache sufferer
who also gets the headache-that-dare-not-speak-its-name.
I very much doubt that there will be many cluster headache
sufferers on the m*g*a*n* board that can share experiences with
me.
2) Have you actually read the boards at that site? The M-word
board hasn't had a post in a month, and the cluster board is
getting about a post a day lately. So basically we are being
told to go somewhere that no-one will listen.
I agree that we shouldn't tolerate postings here where
m*bleep* headaches are the PRIMARY topic, however, I really
can't understand why a cluster sufferer can't talk about them.
Some people say they worry about confusion, well who
better to know the difference between a cluster and an
m-word than someone who suffers from both? People like
us can help clear up any confusion.
You guys claim to be "like a family" to us fellow
cluster sufferers. But to me this feels more like an
exclusive clique when I shouldn't post an honest message
that is on-topic, just because it alludes to the m-word, when others
are posting totally off-topic messages with total acceptance.
I have nothing against off-topic posts. I just find
it aggrivating and hurtful that their posts are welcome
and mine are not.
Thanks for listening
Tony