Difficult problem involving jaw/ear/tongue

[levinv]

I have posted this question about my symptoms to neurology. I hope it's okay to get the opinion of someone in this community too. I have been dealing with these symptoms for about 2 years and they seem to occasionally get better, but the overall trend is down. Currently I am taking time from work because I cannot use a computer or talk to anyone for more than an hour without having severe pain.

blood tests: no signs of arthritis/autoimmune problems

scans:
- mri of head unremarkable
- ct scan of head unremarkable

orthodontist:
- currently using a hard plastic splint
- says bottom teeth are too far back; recommends braces and surgery to repair bite

neurologist:
- offered clinical diagnosis of glossopharyngeal neuralgia; currently using medication - have tried tegretol, trileptal, amitryptiline without much success

neurosurgeon: suggests vascular decompression of 8-9 (glossopharyngeal) nerve bundle.

symptoms right side:
- painful sensation of pinching in ear when talking (seems to be triggered when closing mouth) that becomes progressively worse until it becomes debilitating
- very unpleasant burning/tingling sensation from the ear to base of tongue and along bottom/side of tongue triggered by sitting, bending head forward (cooking, reading), using computer, lifting weights (seems to be tension in neck that triggers it)
- some ache

symptoms left side:
- some ache in the jaw when talking (very minor compared to right side)

misc:
- have tried gentle cranial massage, chiro, acupuncture without success

[ChloeSue]

Hi:  I just found this group and read your post.  Have your read the book Strike Back,
it deals with all sorts of facial pain and their treatments, put out by the Trigeminal\Neuralgia Org. I believe, but if youre interested, I'd check that out to be sure.
I have no idea what to suggest for you.  I've dealt with daily facial/jaw pain for 11 years now, every day, it rages.  I've tried the meds like Neurontin, but I always feel I can handle the pain better without that classification of drugs as they make me even more
fatigued and dizzy too.  I wish I HAD a diagnosis!  For one thing, I have a spur in my left joint, some arthritis, and a flattened condyle and displaced disc.  But I also have
what seems to be nerve pain which began he day after my four front teeth were extracted (long story).  I've also had Botox injections to relax the muscles under my jaw and inj. into the trapezius and rhomboid muscles only to become paralyzed in my throat and on a feeding tube for 3 months and developed bilateral pneumonia.  I was very ill! But, I digress, and I go on with this constant pain where I could just scream.
I do take M.S. Contin although not a high enough dose as it barely touches the pain.
I think, although you are in pain, you are fortunate to have a definite diagnosis, and I
hope whatever you decide from here on out will be the decision that will at last bring you complete relief.

[scottma]

Neck-tongue syndrome may also be included in the differential diagnosis. Neurontin (gabapentin) or pregablin may also be effective for neuralgia. Further consultation with your neurologist is advised.