Posted by pinksharkmark on March 07, 1999 at 11:44:29:
I've just spent several hours reading posts to this message board.... so glad it exists. From what I've read, there are plenty that are worse off than me. I never would have believed that a few days ago.
I had my first CH in about 1985, when I was thirty-one, though they were misdiagnosed as migraines till 1993, when I was introduced to Immitrex. I kiss the feet of the team that discovered Sumatriptan! Propanolol seemed to abort the cycles for the first year or two... now they do nothing. Same with Verapamil.... initial success, then nada. I have never been able to try O2. I have been living in the Dominican Republic for the last eleven years, and medicinal O2 seems to be nonexistent on the north coast here, except in emergency rooms. I have to have my Fiorinal C and Immitrex (and now Zomig... Zolmitriptan) shipped in by FedEx by my parents in Canada, since neither is available here. Another expense... sigh. Anything with ergot in it makes my tongue swell up and gives me terrible hives.... the only thing I've ever found in my life that gives me an allergic reaction, and it is one of the mainstays of CH relief... ironic or what?
I work as a bartender.... this latest cycle has made it impossible to work since mid-January, and I have been taking 3 to 4 Immitrex or Zomig (very slightly cheaper, a bit faster-acting, a bit longer-lasting) for almost 4 weeks now. Expensive as hell, of course, and my money is fast running out. I am episodic... 6 to 12 weeks every 10 to 18 months... I can't even imagine being chronic! The very thought terrifies me. If I owned a gun I wouldn't be here to write this.
Sorry if this sounds disjointed... I just took my first ever dose of prednisone and sansert and am feeling kinda spacey. I hope the combo will abort this cycle. Prednisone starting high and tapering down with simultaneous sansert starting low and tapering up. This therapy was prescribed long distance by a neurologist in Canada. Anyone had any success with a similar regimen?
Random success stories... when my cycle begins I get what many people seem to call "shadows"... I have found that a teaspoon of ground ginger mixed in warm water will eliminate them for a few hours. As the cycle progresses and the pain gets worse, I move to Fiorinal with codeine... bad constipation, but what the heck. When I am in the worst part of the cycle, Immitrex or Zomig seems to be the only thing that works, but then only for 6 to 8 hours, and sometimes it takes as much as an hour and a half before they kick in.
How to describe the pain? My eye is the worst... feels like it is a testicle being squeezed while a white hot poker is being rammed through it simultaneously. From what I've read here, I have it easy compared to some. I have often seriously considered suicide, but I can't bring myself to inflict the emotional pain on my girlfriend and my parents. If I was an orphan and single, I would do it in a second
Sorry... didn't mean to whine. A few things I've read here seem hopeful... this flooding with water business would be great if it works... cheap, no side effects. There is no way that I could bring myself to try vigorous physical exercise, though. Just not possible.
I seem to differ from the majority of y'all in that pacing and hitting myself in the head don't seem to be much more effective than curling up on my hands and knees (fetal position with a pillow firmly pressed against my eye and rocking rythmically. Sometimes I stroke my left side, hip, and thigh with my free hand at the same time.
A small bit of humor here... a doc once asked me how long the headaches lasted if left untreated. GUFFAW!!! I told him that I had no idea... I have never had the courage to ride one out without taking everything I could get my hands on. (Except alcohol, of course! I figure that cluster headaches are probably the one sure-fire cure for alcoholism) He seemed baffled. Go figure.
Some questions... does demerol or morphine sulfate work better or faster than Immitrex? It's GOTTA be cheaper, and I know I can get them on the island here. Does Valium or similar anti-depressants do any good? Does prednisone really make your hair fall out? I know it sounds dumb, but I'm starting to go bald and I would prefer not to accelerate the process. Ah... vanity, vanity!
Dang... I just reviewed this post and it does seem kinda scrambled... not my usual well-reasoned, logically arranged work... must be the meds and the sleeplessness (or hopelessness). Any responses or follow-ups will be greatly appreciated. To all of youn and especially to all you chronics, hope y'all have a pain free day.