My heart goes out to you, and I can relate to some of your frustrations. I too am limited by my insurance, and went from a career to being at the mercy of government assistance. I have experienced severe nerve pain from what is suspected to be Trigeminal Neuralgia, but nothing on the scale you have endured. I never heard of the condition you face, but I hope and pray breakthroughs in research and treatment prevail soon. Keep on trying to find help for your condition and pain--I hope that help comes your way soon.