Posted by Sean (18.104.22.168) on December 13, 2001 at 09:31:54:
I apologize for not responding last night to all of your messages. Please read below.
Thank you for your messages. I know the demon quite well...fortunately (if one can use the term) only on an episodic basis. I am skeptical of the medical establishment as well, having been through sinus surgery, put on B-blockers etc... before finding out through forums such as CH.com what the disorder is about and what is effective.
In the past I have had only limited success with verapimil and O2. Predinisone is fairly effective for me, but the side effects are pretty bad, and I worry about the long term consequences of pred.
Being in the medical/scientific community, and suffering from these damn things, I have thought alot about their etiology, mechanism of action etc... It is clear that the episodic variety, given its remarkable periodicity, both seasonal and circadian, is somehow tied into the hypothalamic clock. There is alot of recent literature describing the molecular components of this clock, both in Drosophila and the mouse, two good genetic models to test mutants in the clock components. The full understanding of the clock is along way off, escpecially in humans, where it is difficult to do the same sorts of experiments. However, one can generate hypotheses from the mouse/fly research as to what is happening in humans, and how one might intervene.
As I mentioned in my post, I have had some recent success in preventing my own bouts of CH, and although some would probably call it premature to say anything, it is at least interesting enough to me to want to know whether it might help anybody else. Honestly, I was initially thinking only of the episodic sufferers, but the overwhelming response has been from Chronic folks.
So this generates two options. One is to just post on the board an anecdotal account of my own experience and my theory. The other is to try to organize a little study, obviously not too formal, since it would be self-initiated from the participants of the board, but at least in hopes of generating some real data as to any general effectiveness.
Do you have an opinion as to which route to take?
I am initially leaning towards the latter if the logistics of it are not too difficult.
Please let me hear from you.
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