Posted by Jack Boyd on April 29, 1999 at 19:15:38:
I have been clicking on to this site since its inception about a year ago. I have alternately been an active participant and a sometimes bemused but always interested observer. The site obviously performs a great service for all of us.
My concern and my recommendation goes something like this:
New folks come on board and it seems there is always the same, sometimes less than efficient, education process that takes place. People are told that yes, there is treatment, what the options are, the side effects, etc., etc.
I think that it would be enormously helpful if we dedicated a part of this site to a simple listing of the facts about clusters that ARE KNOWN. In spite of all of our conjecture about root causes, and the medical community's benign neglect, there are many important
things that are known about clusters. The facts go something like this:
Clusters are not a fatal disease.
They are a true vascular headache (like migraine). The mechanism for the pain comes from the dilation of blood vessels after they have constricted. Many of the
treaments interfere with the constriction of blood vessels.
The hypothalmus ( circadian clock ) and various nuerottransmitters such as serotonin are strongly implicated as a root cause.
There are treatments that can be categorized as abortive and preventative.
abortive: oxygen, imitrex, et al
preventative: verapamil, prednisone, psychotropic medicine ( elavil, lithium, etc. ), etc.
All of these medications have well known side effects some short term and others long term.
When all else fails there is surgery.
Neurologists are usually the most knowledgable MDs.
Alcohol during a cycle will almost always trigger an attack.
Males are more likely to suffer from clusters than females but there are a significicant number of female sufferers as well.
We could present these facts after proper review by a knowledgeable physician ( such as Doc Greg ) with all the proper disclaimers to prevent liability.
Stating the facts in clear plain english ( not techno-babble ) would be of great value for anyone who is new to this game and it might free up the bulletin board for more focused and useful discussion.
The part of this site that descibes clusters is great but I do think we need an edited, abridged version for quick reference.
I would welcome any comments via email.