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I can't claim to understand your particular pain or the other things you're dealing with, but I also have dealt with extreme pain since my first nerve surgery some 32 years ago, about 6 months after I graduated from high school. Since then, I have seen around 60 doctors and have taken over 50 different medications (I stopped counting both when they reached 50.) I've also had a dozen surgeries to either cut out neuromas, remove scar tissue, insert nerve stimulators, try new stimulator electrodes, reposition the electrodes, and attempt to do the stimulation at the spinal cord (dorsal column.) The only things that haven't been tried are deep brain stimulation, motor cortex stimulation, periaquaductal grey stimulation, a morphine pump, and direct administration of anesthesia to the occipital nerve (the nerve where my trauma occurred.)

When things really started getting bad, mere puffs wind on my hair would trigger knife-like pain in the back of my head. Sometimes the pains would come even without anyything touching my head. However, that would have been preferable to the year and a half that I was bed-ridden because of constant, severe pain. I literally spent only hours out of bed during that time, and most of that was to see my doctors. I honestly don't know how I managed to keep from going insane. At the very height of my pain, I was taking over 300 mg of straight oxycodone each day, and the pain was unbelievable. My children were 14 and 11 at the time, and it was difficult for them to see their normally active, happy dad in such agony.

It all came to a head on July 2nd of 2007, when I managed to overdose on the oxycodone. Luckily, an addictionologist was on call covering neurological rounds the next day, and he switched me from oxycodone to Suboxone (buprenorphine plus naloxone.) I have since reduced my narcotic usage almost to nothing, and should be off of it by the end of this year (2010.)

Another thing that made a HUGE difference was a finding that my vitamin D levels were seriously deficient. Within weeks of starting high-dose (50,000 I.U. per week) of Vitamin D, my overall pain levels dropped significantly. In fact, that is what allowed me to cut back on the narcotic and also allowed me to reduce the only other med (Cymbalta) that I've been using for nerve pain.

In the process, I have learned better coping skills, and that has allowed me to decouple the suffering from the pain. It's mostly a forced relaxation technique, where I can allow the pain to exist without affecting me as much. If there's anything positive to say about constant pain, it's that somehow the body can often learn to compensate by allowing the conscious mind to disregard the pain as not being a real threat. What I have most of the time is the equivalent of a bad headache, but I've been lucky enough to be able to tolerate it with adequate nutrition, exercise, positive attitude, and being able to be an active member of my treatment team. I had to "fire" several doctors before I found a couple of really good ones, and that has made a tremendous difference.

My marriage did not survive the stress, but at least I'm on speaking terms with my ex. We had our share of normal relationship issues, but there's no doubt my illness was the major factor.

I urge you to make sure your vitamin levels are checked. Vitamin D levels are chronically low in much of the population, possibly because we work and pursue recreation indoors much more than previous generations. It's such a factor in chronic pain that doctors are now being told to check blood levels of Vitamin D for all muscoluskeletal pain syndromes, especially when the pain levels are not commensurate with the amount of trauma or disease.

Best of luck. < edited > Finding others with similar stories has helped me realize that I am not alone in my struggle, and you need to know that you are not alone, either.

Jeff





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