Posted by Daddyg (184.108.40.206) on March 26, 2001 at 18:48:40:
what I'm feeling here. Not so sure why I'm even writing this. Don't usually post to groups, nor do I much care to discuss "the beast".
Funny...that's what I called it, too. Getting awful hard to ignore or deny it though, as it's an everyday, every other day experience for me.
I just found this site today. Been to "Achenet.org" occasionally, but nothing ever really sounded like what I was experiencing. Never really bothered to frequent the place much. What a revelation it is to see in black and white almost exactly what I experience, how I react. Jeez....unbelievable. I guess I could accurately label myself as a CH sufferer now.
It's now been around 4 years since they started coming. Thought I was having a stroke with the first one. I saw the PCP, who referred me to the neurologist. My wife's a neurosurgical nurse and knows most of the medical community. The doc was nice, but within 30 seconds of talking with her, she said "you have cluster h/a" and gave me Maxalt. Never having taken meds, nor really wanting to start, my immediate impression was "I've been labeled"; she never ordered one test. I put the maxalt into the drawer and forgot about it. (I've since had a CT and Xray...nothin there)
Interestingly enough, my wife connected me to another physician. He is anything but conventional. Specializes in allergy and craniofacial manipulation. Our first visit, we talked...that's right, just talked, for about an hour; never had such an in depth history taken, ever. Very long story short, the first thing he did was to attempt to attempt to put my head in "neutral" through optometry. See..I have a "lazy eye"; amblyopia or amnisimotropia is the scientific phrase. Can't see out of my left eye anywhere near what I can with my right (h/a ALWAYS on L side). He got me into contacts for "regular" vision, with glasses for computer use. I spend all day in front of the computer at work. Unbelievably, my h/a went away for about 3 months. I was sold. Then they came back. He NEVER made claims that it would work, only forwarded a theory; the head has it's natural rhythm, just like the heart. The cranial bones are NOT fixed and static, but have a regular rhythmic movement to them. Additionally, as the eye focuses, it shortens and elongates, just like a telescope, to bring objects into focus. When the eye(s) is unable to accomodate, the head will contort (narrow, widen) to accomodate. Sometimes you get "stuck", and compress structures which eventually is why the pain comes. He and I had a long talk about the sphenopalatine ganglia...so he's well aware of the anatomical structures involved. In my case, if I can get away from looking at a computer monitor for a couple days (usually over the weekends, I find that they lessen. Can't watch television any more. More then 5-10 minutes...and I'm out of it for a couple hours. His therapy has been to manipulate my head (it's kind of like massage, but not really)and deal with my eyesite. I thought it had merit, and actually benefitted for quite some time. I still do think it has merit (and think it would be MUCH more effective if I didn't have to look at monitors for 8-10 hrs. a day. I'm seriously considering quitting my job because of this) , as there doesn't seem to be any viable explanation for a causative agent for ch. Sure, vasodialation seems to be present, but is that causative or simply a part of the sequela? The answer seems to be as varied as there are "experts" out there.
These days though, the beast visits 4-5 out of 7 days. I pulled the maxalt out of the cupboard about 2 months ago. It's gone. Had some dental surgery (not related) about 4-5 months ago. Funny, the oral surgeon gave me some Fiorocet to deal with the surgical pain. I found it amusing...the pain from the oral surgery maybe reached 1-1 1/2; not to tough to deal with when three or four nights a week you hit an 8-10. Anyway...they tide me over, or maybe just exhaust me to the point that I pass out.
Over the last month, my wife's gotten increasingly concerned and frightened. These days, they're bad. I'm going to another neurologist. Trouble is....especially after finding this site, that treatment seems pharmacological, rather then curative. So...I risk side effects, hangovers, etc., or acting like I belong in "cukoo's nest", i.e. Lithium therapy. Course, I can continue to try the therapy that's been somewhat helpful, and continue to smash my skull and rock back and forth in the middle of the night, hoping not to moan to loud so that I wake her. Not much to look forward to,unfortunately.
Anyway..guess I'm done ranting. I feel for ya'll
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