Posted by David (216.250.33.147) on February 21, 2001 at 23:36:55:
I was diagnosed with clusters back in 1973...tens of thousands of dollars for tests, cat scans, dentists, anything for an answer, etc. Over the years...'sansert', ergotomine, cafergot, ergotomine injections, lithium, beta blockers...the list goes on.
I then started taking things in my own hand...charting, research, commonalities, etc.
My headaches were always left side, usually behind the left eye, sometimes radiating to the jaw. Pain, you know the story, excrutiating...off the scale. 4 - 5 times a day, 30 minutes to several hours for each. Knowing it was about to hit, pacing, wondering about options...yeah, that too.
Scared to death to go to sleep knowning it wouldn't be for maybe an hour or two before being woken up with a full blown episode...
Oh, how about driving and getting hit by one...God only knows how many times I wanted to drive right into a bridge support.
But about 3 years ago, something peaked my interest. Trigeminal Neuralgia. I noted that I favored laying on my left side when sleeping and chewing on the left side. So I stopped laying on my left side, and with the help of my wife who makes sure I don't lay on my left side, I haven't had a night time episode in three years! Another thing I found, I can trigger a cluster by rubbing the left side of my face...so, I am protective of the left side, which includes no chewing on the left side. It appears the trigeminal nerve is the culprit. I have kept to this regimen and had only a rare episode. Usually I am able to keep it at bay by placing an ice pack directly over the trigeminal nerve and taking 3 500mg Anacin extra strength WITH caffine.
Hope this helps someone else...it did me.