I’ve have TN for 2+ years now but this most recent flare 4 weeks ago has some very odd symptoms. Sometimes it does the left and right together, sometimes apart. This time it is on the left for the first time, previously just on right. Ears and sound are killing me, wearing eyeglasses hurt, more migraines. Typical cycling of pain, lower jaw, upper jaw, cheek, eye socket, then start over. What is odd is on the upper jaw, sometimes all the teeth, sometimes just a few.
Anyone else have odd flares or flares that dramatically change from previous occupancies? Thank so much.
Glad you are feeling better. I think I’ll use an anxiety pill and see if it helps, especially as I have trouble sleeping on a good day!
Mine are changeable, too. People will ask how I'm doing, and I tell them I'm thus and such (insert level of pain here) for now. Who knows from moment to moment with this stupid disease? Usually right ear, occasionally left. Usually burning, sometimes feels like I have an electric written wiggling in my ear. Sometimes my top teeth, sometimes the whole right side of my face.
I hope you find some relief soon!
I've had TN for at least 20 years. Attacks have always been on the right side and I'd go months, even years without an attack. Then I'd have a severe attack. Exactly a year ago I had an attack that lasted 3 weeks solid. It was the worst pain I'd experienced with TN. Just unrelenting. My doc prescribed all kinds of pain killers ending with the narcotic, hydrocordone. It didn't touch the pain but simple Ibuprofen helped somewhat.
Anyway, about a week ago I started getting little jabs and twinges in the left side of my face. For the past three days the pain has increased so now I have pain left and right (first time ever). Same as you, sometimes the flare-ups are separate, sometimes together. I don't understand how one can get pain on both sides since it involves two trigeminal nerves. Can someone explain? I take Lamictal on a daily basis but with flare-ups I take Neurontin. I can only take it when I can sleep since it makes me so loopy and tired.
I've also noticed that, leading up to this current episode, I have been extremely fatigued. It's an effort to do anything and when I get home from work I just want to fall into bed and sleep like Rip Van WInkle.
It makes me feel so much better just to hear that someone else has it this very odd way vs. a more conventional way. I kept thinking it was just me!
You are not alone with the traveling pain! Mine is usually the worst in my jaw and cheek, left side. Also feeling like I have a mouth full of bad teeth on that side, but I have no back teeth there. Lately it's been the back of my head, both sides, and my forehead and scalp. I also get twitching in my eye, cheek, and my lips go numb in certain spots. Just part of it, I think. I hope you feel better. I hope we all do!