Way too long.

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Help us fight Cluster Headaches! Visit the O.U.C.H. Website!

Posted by Paco ( on May 18, 2001 at 13:05:00:

DJ launched this site in the spring of 98. A few other clusterheads found their way here. Quite a few of them still read the board daily and support each other through the misery of life with clusters. You can see their names on the MB every day. Their "family" has grown rapidly. Like other families, this one has its ups and downs-and sometimes its down-and-outs.
When I found this group, I felt a great relief-and sorrow-- at knowing others suffered like me. In my exuberance, I read all the medical info and tips and most of the previous posts. What a treasure trove of knowledge and experience gathered through the many hours of research by some of the people who are still here. For twenty years, I had read all I could find about clusters, (very little) visited more than fifteen doctors-from GPs to ophtalmologists to dentists to acupuncturists to chiropractors to quacks, and even neurologists.
My first mistake on this board, (I've made a lot of them) was to post that I would welcome information and advice from anyone. I didn't understand-at first--the importance of keeping the site exclusively for clusterheads. I'm a slow learner, but I finally got it. When migraneurs use the cluster headaches message board to provide support and advice for each other, it becomes a migraine headaches support site. Elaine and Todd created a site where people with any kind of headache can support and relate. I think they did that to help preserve this site exclusively for clusters.
Recently, my posts have become too acerbic and have caused relational problems rather than support. I am often too quick on the trigger and react to what I thought I read. When I saw a long thread of discussion involving migraines and clusters, I reacted insultingly to Janie. I later apologized for hurting her feelings. Still, I have the same opinion, that if those of you who are so unfortunate as to have clusters and migraines start discussing migraines and medications for migraines and commiserating with each other about your migraines, the intended structure of this board will change. It won't happen overnight, but eventually this site will no longer be exclusively for clusters.
So. Some will argue that we discuss everything else under the sun, so why not migraines? Well, there are several reasons: When people post about deaths in the family, fighting brain tumors, lung cancer, heart disease and ingrown toenails, they are not seeking advice or medical information from this cluster site; they are relating with their family. Hmmm, so, logically then, why can't we discuss migraines? Because migraines aren't clusters and the confusion about the two diseases has caused untold, unnecessary prolonging of pain through false treatments and misinformation. Almost daily, someone new will seek help for their "cluster migraines." Several people on this board suffer from both, and there are supporters who suffer from migraines who would never seek advice and support here.
I have learned to care a lot about this cluster family, and I often get too vulgar in my perceived protection of that exclusiveness. Still, I promise to try to better tailor my remarks to people who don't know me. Those that know me just ignore me. :-) That's for you. Den.

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