Trigeminal Neuralgia Support Group

I wish I had an answer for you sarahanne. I have never herd of these symptoms from TN. Someone who might know is sunflur (yes, it is spelled propperly).
I do search around a lot so if I do run accross something I will let you know.
I am sure you will get some type of reply regarding these symptoms.
My prayers go out to your husband.
Take care, I know the type of frustration you and your husband go through.
Mike

Hi sarahanne,
I've been living with TN for several years now and can't say that my symptoms are like your husband's at all. I don't have instant lightning bolts either. It begins with twinges of pain in my left ear then just intensifies until it's like someone is pounding a hot curling iron into my head through my ear. I don't feel pressure, but I do know that each of us experiences this in a different way. I too take tegretol and it helps keep the attacks to a minimum. Thank goodness!
Take care and keep asking questions! My best to your husband, may he find answers.
Love and Peace........

I have TN and a horrendous case of TMJ. I understand the bumpy highway thing. I have to avoid pot holes when my TMJ is bad. Right now, the tegretol has taken the TN away (yippee) But I am working with an oral surgeon, and neurologist, a dentist and a physical therapist with my TMJ. I am curious, does your husband have a deviated septum? (have sinus issues been ruled out?) often times that can put pressure on the nerve causing pain and a "stuffy nose" feeling. Good luck- I asked my neurologist yesterday about the connection between TN and TMJ, he said "its all connected". That made me feel better, at least I am not going crazy. Keep us posted:)
Jill

I get more of a pressure in the right side of my upper jaw. I can't say that I feel like I have a stuffed nose. I get few of the lightning bolts. But understand how irritating it is to have the pressures in the face. It just doesn't seem to go away.
Here for you if you need a friend.
Becky

Sarahanne-
ONe more thing I thought of while I was at the gym. Cluster Migraines can present with a stuffy nose- TMJ can cause cluster migraines. I thought I should share that before I forgot! I hope some of what you are reading here helps:)
Jill

Hi Sarahanne---what you describe sounds a lot like what I experience. Nerve blocks can be really helpful. The one that I had didn't completely take away all of pain, but in certainly helped. Good luck to you both!!

Sarahanne, my pain isn't the lightning bolt pain either. Mine is more a constant ice pick in my cheek and hard pressure on my forehead type of pain. My doctor has me on Topamax (for TN) and Buspar (for TMJ). I was on the Tegretol for about a year and it just didn't do it for me like the Topamax and Buspar has.