Posted by John Reynolds on September 09, 1998 at 13:30:35:
In Reply to: Misery posted by GhostRyder on September 08, 1998 at 20:34:30:
I'm a chronic sufferer for about 12 years and am usually on verapamil to try to prevent daily headaches, but I have been put on or tried all sorts things when the verapamil frequently fails.
Anyway,it would be nice if there was a place for only chronic sufferers because some of our issues are different. But maybe some day I'll become an episodic sufferer (please, God!).
Well I just wanted to suggest something that worked for me for awhile ago and that I'm getting back on track with. Last winter I couldn't control my headaches for quite some time and was missing a lot of work and felt I might go nuts. I used (along with a protracted dose of predisone) the full-spectrum light info from Paul's Cluster Headache Homepage (see clusterhead.com's cluster links). It really seemed to help prevent the clusters once the prednisone finally clicked in and stopped the break-through headaches ( or limited them). I was able to eventually cut my verapamil dose down to just 2 and perhaps even 1 tablet/day at 120mg (not sustained release tablets).
This was as long as I kept getting up at 5:00 a.m. each morning and excercising or reading in front of the panel of full-spectrum lights that I had rigged using Paul's info. But I still had to get to bed quite early (9:30 p.m.) and not nap at all or I would get headaches. It is very difficult to maintain a normal life and never stay up till 10:00 p.m. When I went on a week's vacation in the Spring, I quit getting up and using my lights daily and eventually had to work my way back up to a high dose of verapamil. Now that high dose isn't working again, I'm back to using the lights and another round of predisone. I just started the predisone a few days ago so I'm not yet out of the daily headaches. When I can't abort them with the oxygen or jumping rope at onset of pain (or combining jumping up and down with the oxygen) I have a pretty nasty time of it. Lots of things a work for a while or help a little, so don't give into the "suicide headache."
I think that there is a lot of evidence that the headaches are somehow related to the sleep cycle. They seem to strike folks that do shift work a lot. Trying to straighten out one's sleep/wake (cicardian sp?) rythm makes sense to me. Also, a lot of the drugs that work for prevention seem to be ones that also change the chemicals involved in the sleep cycle. I know at least one University is conducting a study on clusters and sleep cycles/disorders.
I hope this helps. Also, if I can't get control of these very,very soon, I will see my doctor about getting a prescription to nasal DHE. I've use the injectible form in the past, but I have a hard time doing that any more.
I'll put another posting up later to let you how the lights work this time.
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