I’m so sorry you too experience this pain. I have chronic active sarcoidosis that plagues just about every aspect of my life. These diseases/conditions are just awful and others do not understand the absolute struggle that we go through. I too have chronic debilitating pain, but I wouldn’t dare compare it to the pain of trigeminal neuralgia. I’ve seen what my mom goes through and it’s awful. She has tried oxcarbazepine and maybe carbamazepine, but she says the dizziness is just too severe to tolerate. I keep telling her to ask her doctor to use a compounding pharmacy and ask for a “special” dose, a reduced dose for her to try, but I’m not sure she has. I’m thinking that if she could possibly try maybe even a quarter of the lowest standard dose, maybe it would help and not have such severe side effects. I’m so sorry you have to live with this too. I’ll say a prayer for you.

In regard to the neck/cervical spinal problems, my mom did have a pretty serious cervical spinal injury several years ago, but I think this may have started before then…not sure. I’ll have to ask her. She had Hep C from a blood transfusion in the 80s and was diagnosed with Sjogrens several years ago as well. She also has osteoporosis so who knows! She has a lot of chronic pain everywhere anyways, but this is unimaginable pain. She did say when she tried the medication (either the carbamazepine or oxcarbazepine) that it did help, but she was too dizzy to function. She’s 74 and still won’t retire because she afford to do so, but she REALLY needs to.