My experience

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Posted by Sean ( on December 13, 2001 at 20:05:46:

In Reply to: Would still like to know more about YOUR experience....... posted by Glenda on December 13, 2001 at 18:31:58:

Hi Glenda,

As I mentioned in my previous posts, I am aware that this may all be premature and that the beast may be lurking around the corner but nevertheless here is my story:

When the CH first started approx 12 years ago, I would always go into a cycle in the summer, starting late June, running through July, and ending in early August. I would always get my headaches around 10:00 in the morning, like clockwork. Basically textbook episodic CH, although for the first 2 years I thought they were major sinus headaches (never heard of CH), and had the sinus surgery etc... and then had a cluster a week after my surgery.

Early on I would sometimes have a cluster bout in the winter as well usually December-January, then later I would always have the second bout. Several years ago the cycles shifted to Spring-Fall e.g. April and November, and more recently they have become somewhat unstable, e.g. the fall cluster running through the winter and several CH's per day, with all the usual triggers.

As far as KIP scale is concerned, I usually get up to around 8 or 9, never rushed to the ER from home, though I frequently walked over to it when I was on the wards as a med student and sucked on oxygen.

My last cycle was in the Spring. I started taking the SAMe in the early summer, and have not felt even a shadow since. And let me state that in the 12 years that I have suffered from these damn headaches, I have NEVER gone through both a summer and a fall (and now winter) without a bout. So I would say that I have missed two cycles, and this is why I decided to post.

I know full well some of the old timers are shaking their heads and calling me naive, but it is definately something different for my cluster headaches, and therefore perhaps worth a try.

The interesting thing is that I took the SAMe for about a month in the summer at 400 mg/day (while not in a cycle) and then also for the past several weeks. This is what I don't understand. I have not had to be on the SAMe the whole time.

Anyhow, I am really interested to see if anybody else out there has any sort of relief from trying SAMe, although again with the caution that they should read the contrainidications that Alan provided the link to, and consult with their physician if they have questions.

I hope that this answers your questions.


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