An Epileptic Mouth

The spiking pain on the right side of my head that has confounded doctors for two years finally has a name. I have been tested for temporal artery inflammation (and later told that was impossible – I was too young), had cat scans done on my sinuses, had my teeth checked and my eyes examined, taken antibiotics, endured repeated blood work for who-knows-what possible illness, been told “you get headaches” and given medicine that would eat my stomach if I took it for more than 6 weeks. And then one day, almost two months ago, I went to a new dentist. When I got there, I realized it was a woman I knew when I was teaching at the dance studio – she’d gotten married and changed her last name since then. After my cleaning and x-rays, she said she had no idea, but that I should go see an oral pathologist, and she gave me a referral to one in the area.

I saw the oral pathologist Wednesday. After two years of hearing “I dunno,” he had it pinpointed, diagnosed and explained in under 10 minutes. I love this man. Just knowing I’m not insane (about that, anyway) was a huge relief. The short version is that I have epilepsy in my mouth. The longer version is that I have a tic douloureux of the middle superior nerve bundle in the upper right soft palate. The easy version is that some nerves in my mouth have become exposed and cold temperatures trigger a seizure (the epilepsy connection) that sends a horrible spiking pain up the side of my head. But it can be fixed!!

There are some surgical options, which I’m not nutty about. I mean, really now, who wants to think of some doctor cutting open the roof of their mouth and pulling out nerve bundles??? There’s also radiation to kill the nerves, but doc says that’s not too reliable, that the relief period varies for everyone, but never lasts more than two years. So, first we’re going to try some medication, and my regular doctor will have to monitor the dosage and side effects, and I’ll have to have blood drawn periodically to make sure its not screwing up something else. The meds will basically raise the seizure threshold a good bit, so that it takes a much colder temperature to trigger an attack. Doc says I’ll be able to drink sweet tea and eat ice cream pain free, once we get the right dosage. I’ll probably be on these the rest of my life, but if they work, I’ll deal. And who knows, maybe they’ll come up with a less hideously invasive and yet more permanent solution.