Posted by Geo (216.112.236.203) on September 05, 2000 at 09:21:58:
I 'm sorry I can't help it. It saddens me and it pisses me off.
I'm going up and down reading these posts, all these descriptions of swallowing this, shooting that, breathing this- It's madness. It's insane. Yes I understand that all of us do whatever we can to put the "ality" back into the "function" of our lives, and if that means injections ,or oxygen,or demerol,or methadone,or sansert,or prednisone,or any of the other 'crap' we take to subdue the "Evil Genius", then so be it.
But does it make any more sense than just dealing with the pain? I mean, hell, after all of that, just how much more functional can you be? Yes, I've been down the "Yellow Pill Road", and it was horrible. Sure, I had no pain, but I was a zombie. Either that, or I was nauseous,or constipated or crazy, and I hated every minute of it. At least I know that the pain will come and go, and when it does I'll be whoever I'm supposed to be when its over.
Today I'm flipping a coin over whether or not I'm going to go get another referral to another neurologist and tolerate explaining 12 years of pain to him/her, only to have him/her ask- "What was the last medication you were on?" And then argue with him/her that that didn't work. Then back to the CAT room-I HATE that machine!-: Nothing unusual (I could've told you that), and so on and so on.
This ordeal, to me, is worse than the headaches.
Is it me, or does it seem as though a lot of us are comfortable with the idea of being sick and not having any faith in our sense of what's wrong with us?
That might sound nuts, but it's real. YES, WHEN YOU'VE BEEN SICK FOR SO LONG, AFTER A WHILE YOU FORGET HOW TO LIVE WITHOUT BEING SICK. It's happened to me, and it happens all the time. I'm so used to "The Evil Genius" ruining my life that if I go more than 24 hours without an attack I suddenly forget who I am. I lose my identity as a "clusterhead" and don't feel normal anymore.
I don't intend to wait for some neurologist to figure out why I have a hyper-active brain, or come up with some new treatment that might or might not work. If it works for 50% of the CH'ers on the planet, that won't make it any more of an effective treatment on way or another,anymore than imitrex or oxygen.
We've all got to stop being wussy about this thing and
start looking at, and acknowledging EVERY REALITY there is to be considered regarding CH- That means everything from spring water to alien implants. So what if Goadsby is right? It wouldn't have meant a thing to me 13 years ago, because I never had, or knew, or cared what clusterheadache was then. There's obviously more than an edemic hypothalamus involved for some of us, and for some others, that just may be the problem.
But we're never going to know unless we take ALL of the evidence, and ALL of our experiences into consideration.
Peace
PF
Geo.