I am new to NeuroTalk and am hoping to find help and to be of help to others. I have glossopharyngeal neuralgia and am have been going through and episode for about 4 days now. I was diagnosed in 1995 but this is the first episode that has significantly limited me in my daily activites. I do not know anyone with this affliction and am wondering how long an episode can last. I take 200mg of Tegretol 3 times per day during a flare-up.
Looking to converse with others.

Hi,

I was diagnosed a few years ago with glossopharyngeal neuralgia. It developed over almost 20 years from very mild pain to 6 years ago an unbearably intense searing pain in the right side of my head around my ear and down my neck. It is accompanied by difficulty in swallowing.

Lyrica would relieve the pain in about 90 minutes, usually 200mg would do it. But I hate the side effects of lethargy, foggy thinking, impaired motor skills, emotional dysregulation.

Acupuncture usually works for me, though it has only been successful with a single practitioner out of the several I have tried.

Lately I have started a gabapentin/lidocaine/ketoprofen topical cream that seems to help.

I have been trying to journal the episodes to find causative links - nothing stands out yet.

I can distinguish 4 stages:

1 - mild tightness near my right ear

2 - moderate burning pain, aggravated by touching my neck on the right side or touching my ear.

3 - severe searing pain, jaw displacement to the left, difficulty swallowing

4 - agonizing pain, loss of body and thought control - rather humiliating.



Sometimes it is months between episodes. Then again, this summer I had three episodes in one week.


Woke up at 3:30 am Jan 1 in stage 4. Wife got 200mg Lyrica into me, not fun with the swallowing problems. Pain finally stopped around 6 am. Slept until 4 pm. Lyrica fog the rest of the day.


I have a suspicion that my neuralgia may be caused by exposure to chemical nerve agents in military training back in 1987. The one area of the body not covered by the protective gear is neck and ears. There is a hood, but air circulates beneath. My guess is ultra-micro exposures to airborne non-persistent nerve agents in training has caused damage.

I doubt most of the folks with this neuralgia have had the same exposure, but most household pesticides are only one or two functional groups away from military nerve agents.

Man, I've never been in the military but got hit with multiple extremely painful neuralgia's a little more than a year ago. MRI showed inflammation in the cavernous sinus but every test has been clear. Got rid of the inflammation with steroids but still have the same pain. The inflammation was diagnosed as tolosa hunt syndrome, the pain that remains is atypical cranio-facial pain and bot classical and atypical trigeminal neuralgia. A neuralgia in my ribcage started at the same time and after 3 neurologists I'm not any closer to knowing what I have or what and none of them think it's related despite both starting out of nowhere at the same time. I'm on oxcarbazapine, nortriptyline, cymbalta, and percocet all for pain. And I'm a full time student in my 20's and still in terrible pain.