NeuroTalk Support Groups - newbie with glossopharyngeal neuralgia

Hi all,

I was just diagnosed with glossopharyngeal neuralgia a couple months ago, though I have suffered with it intermittently for about twelve years. (I live in a rural area where most of the doctors have little experience with neurological issues and had not pursued it further because of their general lack of knowledge and motivation to even point me in the correct direction) One of them even told me he thought the problem was caused by Celebrex! Thank God for the internet. After putting my symptoms into Google, I discovered the world of cranial nerve dysfunctions and tactfully asked my GP if he thought it was a nerve problem. He had a "Eureka" moment and immediately referred me to a neurologist, who the minute I described my symptoms said, "I know what you have; it's a classic case of glossopharyngeal neuralgia."

He prescribed tegretol, which I was unable to tolerate as it made me very sick to my stomach. He changed my medication to neurontin, which I seem to tolerate much better. Other than dizziness and sleepiness, with which I can cope, I don't have side effects from it. It truly seems to help the problem, because if I miss a dose I can tell a significant difference.

Apparently, this is quite a rare syndrome. I wondered if there were others out there with whom I could share experiences and knowledge.

I am a 54 year old woman, married with two adult children. I work in the library of a community college and teach math part time. I love to knit and create my own patterns for many items. I also love to read. On my list of favorites is also cats and of course chocolate.