I can relate to you pain, Lyn.

I have a lot of facial, head and neck pain. Burning pain around the ear, deep in the ear, through my skull and out the other ear, down the neck, affecting my throat, jaw and tongue, causing fatigue and spasms. I also get deep pain in my eyes, pressure, and stabbing pains. I get electrical shocks across my cheeks, and numbness around my hairline, and nose and mouth. I have gotten pains deep in the jaw and above the tooth line, like you.

I spent a lot of time researching TN. After more than 2 years, and discussing with my GP, neuro, my DDS (who specializes in cranio-facial pain), another dentist specializing in cranio-facial pain. The consensus seems to be its not typical or even atypical TN as recognized. My pain is not fleeting and can last weeks, which is not the usual MO for TN. It seems my Trigeminal nerves are just badly affected by my MS.

I definitely agree, your trigeminal nerves are involved. The level, frequency, and duration of the pain helps define the problem, at least that's the way it seems to me.

I now take lyrica and baclofen. I seems to have gotten some relief--my episodes of pain no longer last weeks, often only a day or two. Don't know if that's the nature of the disease or the drugs.

Hope you feel better soon and find permanent relief.