My husband was diagnosed with TN in September while in the University of Michigan hospital. Meds weren't doing the trick (though he is on 3600 mg of Neurontin plus Tegretol and Cymbalta--not sure of the doses). So his ophthalmic neurologist referred him to a neurosurgeon at UM. He said my husband does not have TN because he would allow the doc to touch his face. He said he has post herpetic neuropathy because he had shingles on his forehead years ago. the shingles were so insignificant we can't even remember when it was. We are going to Mayo next week to see Dr. Garza. Anybody have any suggestions?
Hi gramma6,
I would have your husband write down what his symptoms are and what his pain is like.
Not everyone with TN has triggers on the face that set of TN. Most neurologists will lightly touch the face as part of their exam to see if you present with classic tn symptoms. ( flinch in pain) if you haven’t already done so, check out our face pain info tab as well as our TN fact sheet. These might help you better understand how TN can present.
My very first episode of TN was not from touching my face, a few days later wind or even a light breeze would hit my face and set me off.
The second time around with TN I couldn’t eat, speak, brush my teeth or wash my face without having an episode of TN pain. I now also have what is classified as tn2 constant pain in my lower teeth, ice pick in the ear feeling…
TN is not cut and dried as some doctors like to think, but there are definately other things that could be going on other than TN, it often takes awhile to get a right diagnosis.
Usually if you respond well initially to Tegretol or one of the other anti convulsants the doctors will count that as a TN diagnosis.
I hope you get some answers soon, and that your husband gets relief from his pain.
Mimi