Hello all. There are a couple of things going on with the site that need
your attention. Please take your time and read this page very carefully, there is some
very important information here. Thank your for your time.
I have a couple of things I would like to let you know about (just in case
you haven't been keeping up with the board).
First, as most of you know, the feeling that people don't understand
cluster headaches (including physicians and the drug manufactures), and feeling like no
one is doing research on our behalf is very difficult to deal with at times. Why should
they spend any time trying to help us because there are so few of us and it would not be
profitable for anyone to put any work into clusters? Right? We'll just keep feeding off of
the the migraine industry and keep hoping that treatments for migraine sufferers can help
us in some way. Right? Well, things may be changing....
There was some MAJOR news out of England yesterday from Peter J. Goadsby,
M.D., Institute of Neurology, London, U.K. It seems that Dr. Goadsby and his research team
may have found the root cause for cluster headaches. Their research shows that in
25 male cluster headache sufferers, each and every one of them had "excess" grey
matter in the hypothalamus area of the brain (the part of the brain associated with
circadian rhythms - the 24 hour rhythm of the human body). This could explain why our
headaches occur at the same time each day, season, year, etc. You can read more about this
incredible discovery and see the actual television interview (via Real Video) on the BBC's
website (click here for the article). There is also an article about it on the
USA Today's website (click
here for the article).
I have personally emailed Dr. Goadsby to thank him for his work on cluster
headaches. I received a fantastic response from him assuring us that he and his
researchers are working diligently to find a cure for the demon we call clusters! GREAT
NEWS for clusterheads!!
Second, I need to voice some concern.
The purpose of this website is to give cluster headache sufferers from
around the world a place to come and gain understanding about our condition. Living in a
world that has NO CLUE what we are going through, this website gives us a place to come to
on a daily basis to laugh, to cry, to vent, to share what treatments have and haven't
worked, and to simply share with other people that really do understand exactly
how we feel. What a wonderful feeling it is, as most of you know.
This is NOT "DJ's website", this is OUR website. WE are what
makes this site "tick". I simply provided the place for us to gather. WE are the
one's that provide the content, love, comfort, and understanding. This site would not
exist without US.
As the webmaster, I have NO editorial control over what is said on the
message board or guest book. I DO NOT and WILL NOT delete or edit posts made on either of
those pages (with the exception of two posts I made about my soon-to-be ex wife that had
absolutely nothing to do with cluster headaches and were pretty much uncalled for).
You need to understand that when you post on the message board, what you
type will be available for everyone to read verbatim (sufferers, supporters, doctors,
researchers, drug manufacturers). You need to understand that when you post on the message
board you are not only representing yourself and your feelings, but to others out there,
you are representing US. You are representing what WE stand for. You are representing what
clusterheadaches.com stands for (a place to come for love, support, understanding).
There have been a couple of "spats" on the message board lately.
A couple of things have been posted that some of us didn't like. What WE did concerns me.
It concerns me because the result of our "spats" was seeing posts that said
things like "my doctor visited the site twice. Once during the first 'spat', and once
during the second 'spat'. He didn't get a good impression of US". "I've gotten
so disgusted with the arguing on the site that I've removed it from my favorites and
decided I won't come back". "Why should I post my feelings and risk being bashed
in public?". "I don't post anymore because every time I do, I get harassed with
countless emails".
My friends, I beg of you this. If something is posted on the message board
that you don't agree with, please, simply DON'T RESPOND! If you don't like what's
posted, simply IGNORE IT! Don't post nasty follow-ups and don't send nasty emails to the
poster! IGNORE IT! It's that simple!
There are countless numbers of sufferers, supporters, doctors, etc. that
are "lurking" around our board who read each and everything WE say. With the
recent discovery of Dr. Goadsby and my emailing approximately 100 neurologists around the
country telling them about our "cyber support group", there are ALOT of
important eyes on OUR site right now. Please help US by not pushing those people away by
arguing. Please help US by not making the people who need us the most, afraid to post!
Please help US by not making the "normal people" think we are a group of
hostile, bitter, nasty cluster headache sufferers. Before you press the button to
submit your post, please remember that what you say represents US and what WE stand for.
Post your feelings, have fun, ask questions, tell jokes, be cynical, poke
fun, voice your concerns, whatever. Just please take the extra moment to think about how
everyone watching us will PERCEIVE what you say and how you say it.
Thank you for your time,
DJ
