Posted by Sean (126.96.36.199) on December 13, 2001 at 12:57:47:
Thank you for your input. I promise you that my intentions are pure. They are 1) to share with you my experience and possibly help fellow CH sufferers 2) Potentially organize some sort of study to see if there is anything real to this other than a potential placebo effect.
The consensus from you is to try to do both. I fear that this may compromise some of the rigor of an organized study, but I understand what it means to suffer from a cluster headache, and thus I am willing to do both and sort out the details later.
Let me explain some background. Although some will be skeptical of the hypothalamic clock hypothesis to explain episodic clusters, one is nevertheless left with the challenge to explain the uncanny periodicity of these headaches. Anybody who suffers from true episodic clusters can agree with me.
It is known that neural activity in the Suprachiasmatic nucleus (SCN) of the hypothalamamus is regulated by the molecular components of the clock in a circadian fashion.
In any theory of CH, one also has to account for the unilateral nature of the headaches. It turns out that the two bilateral nuclei of the SCN (on each side of the brain)can osscilate in a split fashion, 12 hours out of phase with each other (for reference, see H. de la Iglesia et. al., Science 290 799-801 (2000)) thus potentially explaining how the activation could be one-sided.
What has been recently discovered is that the regulation of several components of the clock machinery is based upon the redox state of the cell (the ratio of NAD:NADH). By altering the redox state, one can change the activity of several of the key players in the clock system (for ref see Rutter et. al., Science 293 pgs 510-514 (2001).
One group of molecules that are thought to regulate the redox state inside cells are the electrophillic methyl group donor compounds, of which the most abundant donor is S-adenosylmethionine (SAMe).Some of you may have heard of this (also known as Actimet), becuase it is available over the counter at your local pharmacy.
What has been interesting for me is that I have taken SAM (initially for its joint protective function - I am a runner) and have now been through several danger periods without even a shadow. That is what I wanted to share.
Before you run out and try it, let me say the following:
1) I am not a physician (still in school), and more importantly I am not YOUR physician. I am not aware of the possible drug-drug interactions etc... so make yourself familiar with it and consult your doctor if you choose to try it.
2) I have no experience with chronic clusterheadaches. I do not even have a framework of how to think about them. Any response to this (if there is one) might be different between episodics and chronics.
3) If you do decide to try it, please keep some sort of journal of your experience, so that later perhaps a questionaire could be filled out. e.g how long it was taken, what dose, time to benefit, duration of benefit, any relapses etc...
4) I would really like to try to find out if this might be of benefit for anybody else. Please keep me posted. If their does appear to be any benefit, then perhaps a larger more organized and controlled study could be initiated.
P.S. Some of the responses to my message of been quite pointed. I assure you that as a fellow CH sufferer, I would never try to jerk you around. The reason for my earlier posts was to gather a consensus as to how to proceed.
In closing, much of the above is admittedly speculation. But I can say that I have had an unusual experience in relief from clusters since trying the SAM. I realize that the demon may just be lurking around the corner; however, at least for a while he/she has left me alone. I truly hope that perhaps you can get some relief too.
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