I live in Arkansas in a rural area. It’s been a long painful journey with so many dx’s. About four months ago my gp said You have atypical face pain and put me on gabapentin. It would work then after a couple of weeks stopped so the dosage was upped. At 1800mg she sent me to the neurologist in our closest town of 15k people. I had a MRI a week ago that he read and said was normal. He said he was thinking about sending me to a neurosurgeon. I’m now up to 3600 mg gabapentin and 400 mg tegretol. He says I’m a complicated case and actually pulled out a book for reference at my last appt. he’s changed my dx to atypical facial pain in the trigeminal nerve area… Is that even a dx? He’s told me I can’t have tn because I don’t have shocks that send me to the floor. The tegeretol has helped but i still have some pain most of the time 1-4. I think I probably have atypical tn but really need a good Dr. To help me with this. I also use lidocaine cream which I’ve found on here. I’ve been lurking around on here for many months. I’ve searched for dr.s but the ones I find only talk about tn not atn or I could have something else. Here are my symptoms…please help.
Constant pain left side… the location changes thought the day. Before gabapentin pain 6-9 all the time. Pain above teeth is the nucleus… Lol pulling pain behind eye.seen specialist prior to dx and dx with superior oblique palsy… Neurologist disagrees. Have slight prism in right eye to help .70 astigmatism in both eyes and progressive lenses. Pain is in my jaw area felels burning pulling. My gums often feel so raw. Yet I touch them and they are fine. My top molars often feel like they are rotting out of my head.(they aren’t). Pain behind my ear going done my neck. I feel as though I’m having spasms in jaw and temple area at times but I touch it and no spasm. Until the tegretol started working I had had about 5 shocks all in my teeth area. Now that it’s working I’m getting them several times a day usually when I talk or are in a car they hurt but not excruciating. I’m sure I have more variations of pain but that’s I I can come up with in my tegretol fog…lol I’ve cried over 30 times from this pain and I’m not the crying type. The pain wasn’t always constant and best I remember it started about 6 years ago.