NeuroTalk Support Groups - Hello - Glossopharyngeal Neuralgia and More

Four years ago, at 48 years old, I was in the best shape of my life, running marathons and loving life. Then, I started to develop a chronic cough and throat clearing. I was treated for asthma, then reflux. I was tested for everything imaginable. Nothing was found. I tried reflux meds, asthma meds, supplements, integrative medicine, acupuncture. I developed a chronic sore throat, so painful I could barely talk. My testing showed reflux, but the reflux meds didn't help. I tried Nortriptyline. It helped a bit, but not enough. Alpha Lipoic Acid helped a bit. But not enough. In desperation, I opted for reflux surgery, but it didn't fix things either.

Finally, I saw a neurologist, she diagnosed me with Glossopharyngeal Neuralgia. Since then, I've tried a bunch of neuro pain meds with varying results and side effects. I also have developed nerve pain in my scalp around my ears. I've had to give up wearing glasses, because the legs of my glasses cause searing pain when they touch my ears. And for some reason, I have nerve pain in my right nipple. What the?!

Still managing to hold things together somehow. My current cocktail of Nortriptyline, Lyrica and Topamax controls the tongue and throat pain well enough for now. I'd love to find some better relief for the scalp pain, and I'd really like to find the cause of all of this pain, but so far, that's eluded all of the testing they've done.

Hoping to find some good recommendations and possibly some support here.

Thanks!