Hi everyone, well after 16 months of bilateral face pain, my neurologist changed my diagnosis from parathesia to atypical face pain. The pain changes frequently and yesterday for the first time my face on the right side hurt for a minute when I spoke. That really scared me. My neuro advised me not to start meds yet because the pain normally goes away on its own after a few seconds. I can have several episodes one day and hardly any the next.
Has anyone else been diagnosed with atypical face pain and what helps?
Thanks.
Wtf? Get a new neuro. The point of the meds is to PREVENT the pain. Atypical TN can start as seconds of intense pain and sometimes several episodes in a day. I have some days wirh no pain and other days where I stay in bed. Get a second opinion… Please.
I live in a small coastal town in Oregon. I traveled to a larger town in order to see a neurologist the first time. She told me it couldn’t be TN because my pain is bilateral! My current neurologist here in my town doesn’t think its TN either because it’s bilateral and the pain changes. My PCP is willing to start me on anti seizure meds. I see him on Feb 20. I’m a little nervous about starting the meds after reading about the side effects.
I am from Oregon too! And have bilateral pain where the type of pain changes. Not sure what town you traveled to, but I live in Salem and no neuros would see me. They insisted I travel to OHSU as it has a research center for TN. I went into remission 2 1/2 years ago only to come out and going through the same problem with finding a neuro.
If it is TN the anti-seizure meds may or may not work. With atypical sometimes other meds are more effective. But they will have you tru tegrotal, if that doesnt work gabapentin and then on and on.
Go slowly on the meds. I can’t tolerate tegretol, gabapentin is okay for me but I do not get total relief and still need pain meds for end of the day.
It is real bummer when doctors either do not know about TN or as in my case my family doctor had never treated a patient with TN. I went several years on 200 mg Carbamazepine without much success. It took a lot of pleading for a referral to a neurologist and the first two were not helpful. One told me to get my teeth fixed. LOL. I had been visiting my dentist sometimes up to 3 times per week and my teeth were fine.
Be persistent even if it means going a little further from home to get a neurologist willing to work with you as some of them seem to specialize - and not deal with TN
I wish you all the best 
Chippy
Thanks for your responses. I live in Coos Bay Oregon and went to Springfield to Sacred Heart Hospital at Riverbend for my very first neurological appointment.