How far can this thing go? It comes and goes often now but it's annoying. Just a couple of weeks it started in my throat. Only the TN affected side. Feel like when you have a swolen tonsil but it's not swollen and I'm not sick. then the side of my tongue feels like I bit it way in the back. No sores no nothing just pain. Wow.

Yeah, I had that too. Also on the top (right side only) of my palate. Felt like half of my mouth was on fire.

The MVD fixed it!
LS

I guess since I haven;t been diagnosed for a long time they want to try meds first. The thought of surgery is scary.On my head,like though my scull scary.I don't even want to think of the headache in recovery.

Yeah, "hole in the head" is very scary. Maybe it was a bit easier for me because it was my 2nd brain surgery. Or, as my neurosurgeon says, "sometimes the pain gets bigger than the fear"

Wish you all the best with the meds. With luck that'll do the trick!

CAT

Hi. I'm brand new here and your thread caught me right away. You are describing what is going with me right now, if you add the parotid gland swelling - all one sided. As with you, comes and goes. In addition, pain behind and/or under ear is horrendous. This may be ATN, am trying to get dx, looking for new neurologist.... may see Dr. Casey. Anyway, sorry that you are suffering also with this. I take low dose Lyrica which helps but doesn't stop/prevent. Tegretol and neurontin just have too many side effects for me, have used them in past.
Glad to have found this site!
Leigha