It was difficult to get a consensus on the diagnosis, even after MRI showed the compression on the left side. I’m titrating off lamictal due to side effects (I’ve tried almost everything else). The TN certainly is coming back faster than the side effects are subsiding. I was told that I do have TN, BUT, it is not the typical kind…with the burning and numbness (which is spreading to the lower left side of my jaw). Also, diagnosis somewhat complicated by continued sinus problems. Was told by one dr. that it’s not trigeminal neuralgia-“doesn’t matter what is on MRI” but is atypical face pain. Next neurosurgeon disagreed. so 2 neurosurgeons agreed is TN- so, is it TN-1 or 2? sounds like TN-2. All have said none of the procedures will be as high a success as the “classic” TN. Also, dr in Portland at OHSU suggested my “cluster headaches” may really be TN pain…confusing! Meanwhile, numbness and pain in my upper lip makes it hard for me to hold mouth positions (like “o” and “w” for children who need me to freeze in that position).

Dear Camia,

I can SO empathize with your situation in regard to the diagnostic confusion, it is almost a mirror of my own, with my neurologist naming it atypical facial pain, the neurosurgeon: TN, Atypical TN, atypical facial pain in different places throughout his notes.

I have/had 1artery and 2 veins plus significantly scarred dura wrapped around my nerve. The MVD was successful for about 3 months, but the pain came back as soon as they succeeded in finally closing the recurring CSF leak (longgggg story). This was all back in 2007.

Recently we had an NS come to speak at one of our TN support group meetings here in the Bay Area, CA - he was like a breath of fresh air, he recommended that the term "atypical facial pain" be completely eliminated - hallelujah! He is young and at the forefront of a new generation of neurosurgeons who are rethinking the condition.

Anyway, I just wanted to let you know that there are good NS's out there who are heading (no pun intended) in the right direction.

Best wishes,


HI Lily,
Thank you so much for your response. My ns in portland, Dr. Kim Burchiel at Oregon Health and Science University told me that “atypical facial pain” was a misnomer, and should be removed as well. He showed me the compression of the trigeminal nerve on the left side, where all the problem seems to be. I live in So Cal (moorpark) and would like to find a fabulous ns here. If not, I’ll go pretty much anywhere. Since reducing the lamictal to a beginning dose, the burning and numbness have been more severe. I can just feel the migraine starting (the TN appears to be one of the many triggers). I will look at the ns in SF. thank you for the link!

Have a good night!