If you're looking for ch.com...


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Posted by Simon (193.113.185.163) on September 14, 2000 at 20:17:48:

...you have indeed come to the right place, though looking through the last few dozen principal posts, not to
mention the follow-ups, you might not think so.

Iíll try and return the subject to cluster headaches for a while, so a series of questions, in no particular order:

1. How many of you have been diagnosed by doctors other than your usual doctor? - Iíve noticed a few
people over at UKCH saying that they were finally given a correct diagnosis by locums, certainly true in my
own case.

2. What is the most helpful comment youíve ever had from a doctor? MDs are regularly knocked here, but
some are doing a good job, and it might be nice to share their wisdom.

3. Has anyone here actually been cured (ie. had a bout definitely come to an end early or stopped
having ch altogether), or heard of someone being cured, by
a) giving up smoking
b) changing their lifestyle
c) taking up yoga/reflexology/shiatsu/wearing magnets or any other alternative therapy.
I address this question only to those who have been diagnosed as a ch sufferer by a reputable doctor, and
those who are certain that the change has had a direct and causal effect on their ch. I am really too
fed up to hear about someone else who thinks that because they feel a little ďhealthier in
themselvesĒ their clusters are more manageable, and therefore they should evangelise their own chosen
quirk. We all know that we cope better at certain times, and what Iím really asking here is whether
anyone has done something that has had a quantifiable effect on their ch, not on their general health.

4. If you had fifty words on prime-time television to get the message across about clusters, what would you
say?

5. Why should someone with ch come to ch.com? What can they gain, what can they give?

6. What can you do to further the cause of ch sufferers (Answer 1: join OUCH excluded, as youíre all doing that anyway, arenít you?)


There should be enough there to get your teeth into, even if you only answer one or two. If nothing else we
can push the crap off the bottom of the board. Humour, yes; personal insults, no.


Sorry if this makes some people think Iím trying to impose my will on the board, but others are doing so
without even questioning whether there is anything wrong with that, and I think an increasing number of
people are feeling the same. I donít want to have to retreat across the Atlantic and just use UKCH, which I can impose my will on. I saw my doctor
today and handed out the web adresses of OUCH, ch.com and UKCH; Iím beginning to wonder if there was
any point in giving the middle one of the three. DJ - Iím sorry to have to say that!!

Simon





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