Most of the time, I have an ear ache, with periodic "bonus pain" (how I think of it - I'm weird and try to make a joke of things.) I sometimes have throat pain. But I'm noticing similar icy-burning type of pain on my jaw line. Not the cheek, just the jaw.
Does anyone else have that? Is that part of glossopharyngeal neuralgia?
I have TN and GPN so I have pains all over the place!!! Again periodic.
Yes I have the stabbing ice pick ear pain, sometimes ache. Also jaw line, gums and where my bottom wisdom tooth used to be. Also shoots down my neck all the way to coller bone. All on right side. I also have eagle syndrome. Had right styloidectomy last March. GPN pain started this Jan. MVD and rhizotomy sched June 13. Scared to death. I’m on neurontin 400mg 5 times a day, tramadol 50mg 1-2 times a day and klonopin 1mg to sleep. Still lots of breakthrough pain.
I don't have Eagle Syndrome (I asked the TMJ specialist to double check the panoramic x-ray for that, and he did, and saw no sign of it), and only recently got an accurate dx. The neurologist I was originally sent to, and saw for about 2 years, said it was atypical facial pain - and stuck to the AFP dx even when I got new symptoms that were pretty clearly not that. I had a cervical fusion (shoulder pain - I was SURE it was from the shoulder, but the shoulder doc I've seen for shoulder issues did imaging, and nope - but imaging of my neck showed a problem, so he referred me to a particular neurosurgeon) so at my last post-op (and the fusion looks great) appointment, I got the nerve to ask for a second opinion. He immediately thought glossopharyngeal, got another MRI (original MRI of my brain looked normal, but it was different than the one this guy ordered) and it backed up the GPN dx.
He upped my dose of Lyrica to 300mg (the neurologist has upped to 200 a month prior; initially, it really dialed the pain down, but things were getting worse and more intolerable; we already have run through gabapentin, epitol (generic tegretol), Cymbalta, nortriptyline, and amitryptiline before trying Lyrica.) I see him again on May 18 - a month trial, basically - and if I am not doing better, he mentioned doing an MVD (though not by name - described what he would do.)
My worry is - I don't just have flares for a couple minutes, though occasionally get those, but mostly have constant pain, at a variable level. (Earlier it was more mild, now I am hurting much more.)
Good luck with your MVD and rhizotomy. And thanks for your reply.
Oh me too. I don’t have flares. The pain is constant. It’s just either a constant ache or the sharp stabbing or shock waves that are very quick. It’s been relentless. Meds do help some but by no means everything. Stress quadruples the pain. Any stress.