Hi, I am new to this forum and I thought I would share a little. I am a RN who has TN and AD. I got mine from having an acoustic neuroma brain tumor removed about 14 yrs ago. The surgeon did a "mid fossa" approach, meaning he cut in front of my ear. This approach severed my Trigeminal nerve, which he repaired at the time of the surgery. It wasn't until about 8 years post op that I started having problems with TN. As you know, it was so excruciating I agreed to anything to stop the attacks. I was being seen at the U of MN and they did a percutaneous trigeminal rhyzotomy. Everything was wonderful for 10 full days. I was completely numb, but out of pain. I could easily live with that. But then, burning pain started setting in. The burning is so severe it is incredible plus now I am back to getting the lightening strikes as well.
For the last 4 years I have been treated by a TMD/TMJ team at the U. They started me on so many meds, most of which I cannot tolerate. One of the best things they did for me is to teach me how to do a sphenopalatine gangleon block. This involves getting 2% lidocaine Hcl into the back of my nose (on the effected side only) by soaking a long cotton tipped applicator with the lidocaine and inserting in and letting it get soaked into the gangleon. My doc said this is a thing that dentists will use with patients who are too afraid of needles to get novacaine. This seems "icky" to have a stick sticking out of your nose for a while several times a day, but it really takes the edge off the severe burning. It takes a while to perfect the treatment but if you have not tried it, I would suggest at least talking it over with your doc as it is treating the pain locally instead of systemically and it is very inexpensive which is important as your medical insurance may not pay for it. I hope this can help at least someone else with these terrible condition.