Four years ago, at age 48, I was in the best shape of my life. I had run 10 marathons and was pursuing a Boston qualifying time. I was really, really happy. Then, I started to develop a chronic cough and throat-clearing tic. It didn’t go away, despite round after round of intervention. I was treated for asthma, allergies, reflux, and tested for just about everything. My condition worsened. I began to get hoarse. I had daily sore throat. My vocal chords felt like they were being sliced by razor blades. It sure sounded a lot like a bad case of Laryngopharyngeal Reflux, and my testing showed that I had bad reflux. I didn’t respond to surgery. Nortiptyline helped a bit, but not enough. I opted for a new implant device, LINX, which helps to keep the Lower Esophageal Sphincter closed. It didn’t help.
Finally, in desperation, I went to a neurologist. She put me on Gabapentin. It made me dopey as hell, but it helped. I could barely function, but the pain was manageable. Unfortunately, my neuralgia spread to my ear and around my ear, mostly on my left side. I couldn’t stand to wear glasses, because my left ear would erupt in searing pain. I had to cut the left leg off my glasses.
The neuralgia has spread again, this time to my right ear and my right nipple, believe it or not. No idea why.
I’ve tried a pretty wide variety of meds. Currently, I’m on Lyrica, Nortriptyline and Topirimate. Tegretol helped a bit with the scalp neuralgia, but not completely, and I gained about 20 pounds. I looked like the Pillsbury dough boy and felt sluggish as hell. Right now, I’m using lidocaine patches to cover the bits that the meds don’t seem to reach.
Despite MRIs and just about every test conceivable, no cause has been found. This used to make me crazy, because I want to understand why this is happening, but I’m beginning to try to learn just to accept it.
I’ve also tried lots of alternative treatments. Some helped, like acupuncture, but it only helped while the needles were in place, as soon as they were out, the pain returned.
So, I’m here now. Most days my GPN is fairly well controlled, though it flares up when I’m stressed. Mostly though, I know that if I am quiet, it won’t be much of a problem. My scalp neuralgia is pretty unpleasant though, and it’s more of a concern, because it seems to be wandering around, and I don’t know where it might go next or why.