Posted by Bob Hartje (63.252.41.26) on March 21, 2000 at 23:54:44:
In Reply to: Another night shot to hell... posted by Todd Owen on March 21, 2000 at 23:07:41:
I've been going non-stop now for about 5 months or so. Been through every song and dance over the years and have found NOTHING that lasts for any period of time.
Got hit with a major attack yesterday at sometime around 1 in the afternoon. Lasted about 2 hours or so. Wife and son came home to find me passed out in vomit on the bathroom floor. She wanted to take me to the ER. I did not want to go at that time because a) I was feeling WAY too bad to even slightly move and b) Having been down this road before (ER) I knew that it would only lead to make my problems worse than they were already. After a couple of hours I attempted to contact my Neuro and let him know what was happening and that I would be going to the ER for treatment as soon as I was semi-functionable.
Well, suprise, suprise, the Neuro NEVER bothered to return my call. I went over to the ER at VA Medical Center for treatment.
Making a long story short, I was treated like I was some kind of nut, complaining regularly about "headaches" which made my life sooo unbearable. The "treatment" I received was a couple of shots in the rump and then locked up in an "isolation" room on the Psychiatric ward for about 16 hours. No treatment, no observation, no concern whatsoever for what is a documented MEDICAL CONDITION.
After seeing one of their "expert" doctors this morning, I was allowed to leave the nut house. The horror stories of others as well as my own experiences has always ( or most of the time anyway ) kept me away from seeking the treatment I so desperately need for fear of being branded a nut and locked up like an animal. When the hell is the medical community going to open their eyes and acknowledge the fact that CLUSTERS ARE A MAJOR PROBLEM. They are not going to just go away and even though the numbers of those who suffer from this disease are relatively small, we can not just be swept aside and ignored for what amounts to ignorance on the part of the doctors.
To lie there and suffer excruciating pain all alone, or to "go public" with your problem and be cast as a "nut" and locked up like a rabbid dog. Which is worse, and why are we forced to make such decisions?
With each pending attack I question if I can take another one, why should I continue on and why won't the doctors do ANYTHING to help us. How does one learn to "live with" such a horrible thing in your life? I often (everyday) wish that I could have some type of medically-recognized terminal illness that would have a definite end to it and one which the doctors would sincerely attempt to ease the pain and suffering which I experience through my final days.
Why are there no answers to our questions, why are we ignored, why will no one help us, why do I have to almost die several times a day, why are we the only ones who ask why?
I long for the times when my attacks were eposodic and would run their course, then giving me several months of pain-free living. Several times a day, everyday, day after day is too much for anyone to be expected to endure. Clusters, for me anyway, have become a terminal illness which will in one way or another end my life. For all intent purposes, my life has ended anyway.