Dear Mike I can't email you without an addy but if you don't

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Posted by Charlie S ( on June 30, 2001 at 03:36:10:

In Reply to: Headaches,imitrex,smoking,pissed off posted by Mike R on June 30, 2001 at 02:50:23:

want that, we understand.

Personally, I don't think much of the allergy connection with CH. We like to find something on which to blame this but I'm older and perhaps jaded (54). Like you, my life hasn't been all that wonderful. I've had epilepsy for 42 years, have never had a drivers license and our family was in the auto parts business. Just about 10 years after my seizures began, I was hit with CH.

What a nice combination. Fortunately, because epileptics always see neurologists I knew a good one. I learned a strange and not easy technique that helped me a good deal of the time. I'll add it at the end of this post. By the way, after I quit smoking my olfactory senses got back on line. I quit in 1980 but the CH stuck around for another 11 years. In 1991, they went into remission and I've been free of the thing for all that time. It has nothing to do with the technique below but I suspect it may be my seizure drugs may have had something to do with it. I've taken Phenobarbital, Dilantin, Mysoline, Depakote, Topamax, and now Lamictal. The only drug I still take is Mysoline. The generic is Primidone. It's more often known as that. I've never heard it used for CH, but who knows? Still it took 30 years for that to kick in. Maybe that in combination had something to do with it. Still, I don't take the older drugs, and my new ones, I've only had for a couple of years. Lots of seizure drugs are used for CH. Stick around here and try everything. Usually there are one or two things that help.

Here is the post:

Dr. Wright's Circulatory Feedback

This is not TM, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. With it, I knew I had a fighting chance.

When I was diagnosed, my neurologist said to treat these as a vascular problem. As odd as it sounds, I was told to concentrate on forcing blood-flow from behind my throbbing eye, down my neck and into my arms and hands. When properly done your hands will become warm and redder with increased circulation. I also found it much easier to concentrate on one hand.

What this does is relieve just slightly, the pressure on the affected vessel which causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about 40 minutes to no more that 15 or 20. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. I would suffer only minor twicthes instead of the killer pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided.

I learned this from the Dr. in about five minutes. He simply told me to concentrate on keeping blood away from the head and to redirect it anywhere else. The easiest is the arms and hands but anyplace that works for you is fine. He said to think of it as "filling your hands" with redirected blood. Anything one does to retard this circulation will help. It is important to keep at it THROUGH the pain. This will be hard, but it is the only way this technique will work. I like to keep at it five minutes longer than seems necessary to insure success.

This will not always work but I think it will always have at least some effect on the severity and duration of the attacks. It's great between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than what I got from the Dr. as I've added some of my own experience.

I used this even when awakened in horrible pain. This is very hard but I think it does shorten them. It takes some intense concentration but it can be worth the effort. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck.

Charlie Strand

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