Posted by Michel L (220.127.116.11) on July 21, 2000 at 21:24:49:
Hello CH friends,
The following text is not science, it must be considered empirical datas collected by one individual trying to cope with his own CH reality. I have posted a few times in the past and have followed the board very regularly.
This is the time of year where I should be in a cycle. I have the basic ''shadowy'' pains, but not the crisis of CH attacks. This posting is a description of how I proceed to alleviate and mostly forgo the outright crisis of a CH cycle. In the past I have tried many things, from Diflucan to Yogurt yeasts, trying B6 - Magnesium, Calcium, Grapefruit seeds extract, Prednisone, Feverfew, etc.
This procedure may be usefull to some and not to others, only you can tell. But I am still a strong believer in my own previous theory about myelin sheath injury.(see previous posting many months ago).
For me, the target of my efforts has been the trigeminal bipolar nerve. This nerve as enough ramifications to explain the sinus, teeth, eye and ear pain we experience during a bout with CH.
If I accept my own theory, inflammation is the key to pain, and control of inflammation is the key to relative peace during a potential CH cycle.
Early in December I was starting a new bout with CH, following an horrendous summer and fall. Last year was my worst cycle ever. Never ending, daily attacks, making me virtually useless as an employee, husband or individual. But I worked hard on researching and searching and thinking and reading the most recent publications on neuroscience, headaches and head pain.
My luck, I believe, is that I have not suffered from CH for decades. Maybe I still have enough energy to seek and introspect about my own suffering and the maturity and freedom to elaborate a clear scenario about my own problem.
I noted by empirical observation that during the periods I was painfree I was also taking NSAID (Voltaren) for acute lower back pain, this was a few years ago.
I noted that during a cycle, neck pain always made me try to relax my neck by sending my head backward (and earing a crack or pop sound - followed not long after by a massive CH attack).
In December 1999, I am quite certain I stopped my cycle by pulling my head forward so hard that I saw stars, freeing in the process my trigeminal nerve from a C2 crunch (second cervical vertebrea), and having major pain from the neck to the middle of my back for about a week.
I must say that since then, I have made conscious efforts never to send my head backward or even looking upward. I also rotate my head the least possible on the potential painfull side (for me it is the right side). I don't hesitate to rotate left. When I go to bed, I also bend my neck to the left and use a neck support pillow.
In March, I started to have some significant sinus and eye pain and I went to my Doctor. I told him I tought that CH was coming back. He had predetermined instructions from my neuro to put me on prednisone, but I requested he put me instead on a twice a day Voltaren (75mg) SR regimen, and he accepted to do so. He gave me a prescription for 120 pills.
At this time of year I am very stressed from my job. Nervertheless, I can manage by taking 1 Voltaren every morning, gently pulling my head forward as needed, and taking motrins for any residual pains that usually appears mid morning. I have'nt had any real cluster attacks for months now. I do experience low level pain on my right side that I can manage with motrin, but no full blown attacks.
Other sufferers have mentioned the use of NSAID as preventative. I think it does work if you have the stomach to endure; it is hard on the stomach lining. It is also important to understand the need not to work your neck too hard. I believe it is the source or the location of a pinched and myelin deprived trigeminal termination and also the origin of the basal CH problem.
Of course I can't bring forward any scientific evidence, but the regular use of a peripheral action antiinflammatory, coupled with controlled movements of my neck have kept me relatively pain free for many months now.
Pain free days.
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