Posted by Miguel (209.42.225.84) on February 05, 2000 at 10:30:57:
It is not a surprise that there is not a definitive solution or cure for CH. Coming to this board has provided a lot of support in the sense that I no longer feel that I am alone. It is so rare to find CH sufferers out there, at least that would openly admit it, with whom to share, even if they do not fully understand. One feels so isolated ad misunderstood, which compounds the purely physical effects of CH.
My GF discovered this board only a few days ago. Coincidently, this happened a couple of days after the attack ceased. I am still CH-free, 8 days now? From this perspective, if this is the usual 3 month remission period, CH is so....unthinkable...As in - What DA F**K WAS THAT!?!?!?! I will carry on with my life happily until one day in a few months from now WHAM!!!! All of a sudden, no warning, seeminly following no rhyme or reason. And that is exactly the crust of things with CH...no rhyme or reason.
After reading through posts in this board, the first time that I have been able to share my experiences, as well as learn of other's, it is no wonder that CH has no solution yet. CH manifest itself in so many ways, with so many differences between even the few threads of similarities...Shuch might be derived from the degree of severity that is inherent to each CH suferer. On the oter hand, the only thing that seems to be share by all of us is the excruciating nature of the pain, and how it affects our lives. It is no wonder, and not to make excuses for anyone, that there is relatively little that helps aleviate CHm at least in a more consistently effective manner. Also, it is no wonder that there are so many physicians that do not understand the syndrome that well, if at all. During my brief 14 years as a professional in the development of ethical drugs I think that only working in the viral field was more frustrating. The permutation of change are so large, with the changes coming aqbout so quick in many instnaces that it is a given that the cure for the comon cold may never come. Unfortunately, perhaps the same is true for CH (and boy, do I honestly hope that I am completly wrong in this one). Frustrating to me is that there is not even a shred of any of the drugs utilized for its treament being 100% effective over more than a very smal percentage of the afflicted population. Not only that, but that what seems to be effective today may likely not work for that same person at some later time, thus a new drug has to be utilized to decrease the effects of CH, as in completly back to the drawing board! It is indeed a mindbloggling affliction. Sometimes I wonder - Why me? And why with this CH? why not something like an ulcer or something that is treatable?
The more I see the symptoms in others and myself, the more convinced I become that CH is likely either a genetic disorder. This is merely a speculation since I have no data to support this, although I am positive that someone has at some point done some genetic studies in CH sufferers. Be it weather patters, smoking, alcohol, chicken, postural triggers, light, latitude, the hypothalamus, perfume, and many others, it afflicts only one side! The hman body is pretty much a miracle of symmetry, except for some large internal organ, of course. If it is a purely vasculard affliction, why only affect only one very small portion of the body if the whole body has more blood vessels than all the highways in the world put together? I guess the vascular issue is just another manifestation, not the cause, sort of like the pain, the lateral lacrimal gland swelling, and tearing from one eye. I somewhat certain that the condition is derived from a group of localized brain or nerve cells that are gentically deficient. This would explain CH's compartmentaized effects, that it afflicts a very small sector of the population. Also, that according to what a fellow CH'er conveyed, the affliction seems to be predominant among those from or with ancestry traceable to regions above the 45N parallel. This makes me wonder what is the incidence of CH among Asian, South Pacific, some of the least genetically proliferated, and that remained mostly isolated races of the world. Could this be a "European" syndrome? Is CH something like hemophilia, traceable to a genetic aberration in Europe? Of course, this not about racism, but about tracing its origins as a way of understanding what causes this horribly incapacitating condition. The more is learned about it, the better the chances of evetually having a focused and targeted approach to diminishing the effect of this condition. Many think along the lines of star trek, with one serenditpitous magic bullet found overnight. Unfortunatly, it isn't that way. And if it was, I am sure that things like cancer and congestive heart failure would take priority, the cold reality.
Pay no attention to the above ramblings from an insomniac. That is the other thing; when my CH is gone my insomnia returns. Anyone experienced that? LOL, likely not, just another singularity of CH!
May the Beast die a death conmesurate with the life if has given us...
Miguel