I'm new here, and don't know the typical protocol, so thought I would just post an intro.
I don't know for sure if I have atypical TN (that's my current best guess, though), but have lived with chronic pain most of my life. As a kid, I had "ear aches" which, because of my history (infections and abscesses as an infant, until they removed my adenoids), they treated with penicillin, even though most of the time, they didn't see anything. In the mid 1970s, when I was a teen, I was diagnosed with TMJ dysfunction - it became a popular dx back then. We tried the treatments available (splint with readjusting my bite each week, orthodonture, biofeedback, progressive relaxation, even accupuncture) to no avail. I learned to live with it, and just put up with misery when I had a flare up.
I'm pretty sure there is some TMJ issue underlying, but - I don't think it is just TMJ any more. I no longer have any days that are pain-free, though most of the pain in my right side is a low level managable sort. (I have decades of experience dealing with it, so managed to adapt to a fair amount.) A number of years ago, two things changed, but I kept associating them with either TMJ or "whatever." One is - I can no longer tolerate having my hair touch the sides of my neck, nor wear a turtle neck. (I don't know exactly when that started, btw. I normally wear it up in the summer, and it was one of those sneaky "it got worse over time until it dawned on me, 'Hey, this kind of stinks.' things.") The other one was occasionally when I inhale, I get a kind of sharp pain, like the air is flowing across a raw nerve. (Not that I have a clue what that *actually* would feel like, but that's what my mind interprets it as.) It is, as most of my pain, centered more or less around the ear.
The thing that changed is - in January, it started to be more or less a constant thing. I'm having more trouble with other shirts than turtlenecks, too, if the collar touches my neck. My left side (all the fun stuff seems to be centered on my left side) has a new higher baseline level of pain, and the breathing pain makes it tough to fall asleep sometimes. (So relaxing, ya know? ;-))
I just had my physical Wednesday, and am getting a referral to a neurologist, don't even have an appointment yet. (The wheels of bureaucracy and all that.) So, although from what I read I suspect my symptoms *may* align with atypical tn, I don't really know for sure. For all I know, something may have missed my googling, or worse, it may all still be TMJ, which, based on what I've done, would be a bit disheartening.
Just thought I would say hey.