Posted by gary (126.96.36.199) on December 04, 1999 at 23:45:58:
In Reply to: Sad posted by Lars on December 04, 1999 at 23:02:38:
NOBODY has ever been attacked the first time they have come - honestly & openly - looking for help.
Most receive lots of helpful suggestions where else to look if they have other problems.
If they won't take this advice gratefully & graciously, then maybe they're asked to find their own pew elsewhere.......
so what ?
The examples you used (alcohol or msg as trigger) are ridiculous as a base for your protest - if you HAVE read the discussions over a long period you know that such things as that are NOT what anybody is talking about as definitive or diagnostic of CH
and whether you realize it or not - there are now as many docs using cluster headache as a conmvenient "catch all" diagnosis for head pain they don't have a handle on,
as there used to be who never heard of CH - it's EXACTLY the same problem we've always had - just the other side of the coin
also - there is no "elite" here, but there are a LOT of people who have spent YEARS researching and focussing on cluster headache -
and a lot of them don't have much use for the folks who "barge in" and commandeer 1/2 the space on the board with all sorts of airbrained cockamamy foolishness they dreamed up, because they heard the words "cluster headache" for the first time last week, and instantly decided that sounded like something they'd like to "try on" as an "ailment dujour"
haven't you ever heard of hypochondriacs ?
well, now it's even worse - the shrinks even have a word for it -
"cyberchondriacs": people who spend immense amounts of time surfing the web looking for diseases they can self-diagnose so they can get all kinds of attention
one of the things that comes with following CHMB for a long time (reading 1000s and 1000s of messages)is a knack for "reading between the lines" - sometimes this reveals a LOT that the person posting thinks is unique to them, but is actually very very common
they're apt to get their feelings hurt if someone tells them they're not fascinatingly unique - but so what, it's probably something they need to hear
as far as "misinterpreting people"
I'm just old enough to have been raised that people have some responsibly for presenting their case clearly and accurately if they expect a response in kind
if somebody posts some outrageous thing that draws a negative respnse, they don't get much sympathy from me by afterwards crying "poor me poor me nobody treats me fair, that isn't what I meant"
and if you haven't noticed - there ARE a LOT of people lately trying to use CHMB to justify their abusive drinking patterns, their daily use of illegal recreational drugs, escape from family problems -you name it, etc -
that's their business BUT it is not the business of CHMB to aid and abett them in their self delusions -
all of us - me included - have ALL SORTS of issues and agendas - but just having cluster headache doesn't give us the right to drag them all into this forum - there are places to take all sorts of problems, and when the problem isn't CH, we need to find those other places OR we fould up the focus and dedication of THIS place for the next Clusterhead who comes along & needs help
as far as "freedom of speech goes" - which is often brought up
there's only ONE GUY HERE with absolute freedom to use this site as he sees fit - the guy that set it up, owns & operates it - and to see what he says about this site - try reading the homepage !!
and that means people who want to stick to the topic, and make a contribution, whether they are CH patients or not -
there ARE extremely valuable people here who are family members or health-care providers (supporters) interested in the topic - they're an important part of our efforts & perhaps the most welcome of all
the issue isn't whether you HAVE Cluster Headache,
it's whether you're willing to stay focussed on CH in the discussion--
if you don't want to generally stick to the topic-
here's your hat, what's your hurry ?
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