Posted by Jonathan Poulter on September 17, 1998 at 08:43:39:
In Reply to: www.oprah.com Oprah's website posted by Don M. on September 15, 1998 at 15:37:47:
Sent my letter to Oprah.
'HI Oprah,
I Just wanted to send you a note to ask if you can
help Clusterheadache sufferers with pushing our
need for support. I'm 26 years old, I've been
suffering from clusters for 6 years, and have
been chronic for 1 and a half of those. It took
me several years to get my symptoms diagnoses,
most doctors thought I was suffering from tooth,
bad eyesight or migraines. They finally got it
correctly diagnosed when I went to a specialist
in neurology. I realize that my being form
outside the US may mean you can't do much to
help me personally, but I wanted to ask you if
you could help enlighten the public in US and Canada of the
problems that we cluster sufferers have to face.
I recently went through a very deep depression
as a direct result of the drugs I've been taking
for clusters, and had it not been for a web site
www.clusterheadaches.com I feel I would have take
n my life. I was so depressed that I couldn't go
into work. I couldn't function with the drugs,
and can't live without them. This site helped me
to cope with my pain, and I feel that it could
and would help if others knew of the problems
we have with day to day life. It may also help
us to find support from our government for
support groups etc. At this time there are no
support groups for Cluster sufferers in the UK,
and I have asked for help from the migraine trust
for setting one up, but they are unresponsive
and seem only to want to deal with migraine
sufferers. The truth is I, as does my doctor
believe that many people are misdiagnosed
because of lack of awareness,and that's where
you may be able to help. You may not be able
to help UK people, but if you help US and Canadian people,
we might get closer to helping ourselves.
Thank you for your time
Jonathan.'
I hope it helps