Hi,
I have read all these comments with a great deal of interest and also feel better in the sense that misery loves company, but wish none of us had any of this. After seeing 3 neurologists and 1 neurosurgeon, I have been diagnosed with both hemifacial neuralgia and trigeminal neuralgia. Ironically, because my TN is atypical, the neurosurgeon does not feel he should operate as he does not think it will help me. I have a 10+ year history of chronic pain in other areas of my body including my neck and shoulders and lower back and also neuropathy left over from chemo nine years ago. This one, though is new. I currently take meds of Topomax, Celexa and Zanaflex for pain. I also get pain blocks occasionally. The latest neurosurgeon thinks the pain meds have been blocking the severity of my TN pain. I have already been on Lyrica, Neurontin and Tegretol and could not tolerate them. I have just agreed to try trileptal. We are starting me out at very low dosages. I've only been on it one day at 25 mg. I would not imagine I could take it, but I am hopeful. My next step is going to be to find neurologists or a clinic in the US who specializes in the treatment of TN. I live in both Ohio and Gulfport, MS (near New Orleans). I have to keep looking outside of these states. If anyone has suggestions, I would really appreciate them. Linda