8 months plus

Hi all! I have been diagnosed with GPN and put on Carbamazepine in December. I was originally sent to a Neurologist by my PCP due to intermittent horrible pain in my left ear (discussion called “the pain is the thing”). I have been pretty much pain free since going on the Carbamazepine but now I am having intermittent pain in my throat that feels like tonsillitis with no redness or inflammation as well as minor pain in my right ear. It is there one day and gone the next and then back a day later.

Could this be related, in other words, can it get worse or move? I have a call in to the neurologist but am traveling a lot for work and might be some time before I get in to see him. He wants me to take the Carbamazepine more often (was on one per day, he wants me to take two now). Does this sound like anything anyone else has gone through? Thanks for the support once again


My pain started in my throat and went to my ear, and it got worse with time, not just stabbing pains but triggered attacks which lasted 5 to 10 minutes once triggered. Horrible. I don't know where yours will go. But in my case 800 mg of carbamazepine only helped temporarily despite increased doses. My pain doctor told me that in 6 to 9 months most of their trigeminal neuralgia patients had 90% reduction of pain with all the tricks up their sleeve. I gathered he had not seen anyone with GPN, it's that rare. I asked if the damage were caused by vessel compression, would pain meds simply be masking damage which could end up being permanent? Nobody could or would give me a straight answer. So even if medications work, I figured the nerves might be crushed beyond repair, making MVD success less likely. I didn't want to be faced with surgery at age 65 instead of 58, and who knows what unelected bureaucrat would be in charge of that decision years from now? So I made the decisions. I went to a neurosurgeon who looked at my old MRI from 2007 and said there is a tortuous blood vessel pressing on my nerve causing my pain. I had my MVD 7 and 1/2 months ago and have been pain free ever since.

If I were to go back in time I would have gone to a good neurosurgeon 5 or 6 years before I did and would have avoided all those years of misery. But you have to make up your own mind and look at the risks. I have not completely recovered from my surgery, so I paid a price to get rid of my pain, but I am alive and living again. I was alive with the pain but a zombie on medications and my quality of life was zero. I would do it again. Here's hoping you get well and free of pain.