I have TN, it’s the worst pain I’ve ever experienced, along with gallstones. I started on carbamazepine too, and it really helped, it’s very good for TN. I have quite an unusual case, in that it’s the part of the trigeminal nerve that was in the salivary gland that is misfiring - so anything that triggers salivation triggers the pain. Carbamazepine was good for a while, but I had a couple of strange episodes where I collapsed - I didn’t lose consciousness, it was like my skeleton just evaporated, and I just melted to the floor. This was put down to the carbamazepine, and I was taken off it and put on a high dose of pregabalin instead.
I was due to have some quite major nerve blocking done a few months ago, but since I got my HbA1c down to normal levels, the pain has all but gone. My team think it’s a form of diabetic neuropathy that seems to be reversing with good blood sugar levels.
TN seems to have a few forms, I don’t know if my experience will be of much help, I’m afraid. It was destroying my life, but I barely notice it now.