Saturday, August 30, 2008

A Confession and a Lecture

I am embarrassed to admit that there is one whole category of blogs I steer clear of: blogs by and for people with disabilities and illnesses. I am ashamed of this, because there are countless blogs by people who are suffering mightily with little hope of respite or who are without the means to pay for the drugs which might help them. I justify my callousness by thinking I can do nothing to help. I pray for them daily.

I have spent most of this summer wrestling with my own condition. My kids said I should write about it—not to garner sympathy, because it is just about under control, but as a help to anyone who may meet the same symptoms and not know where to start. The condition is called trigeminal neuralgia and it is easy enough to look up. Early in the summer I noticed short blast of pain while I was eating or cleaning my teeth. By the time my brain realized there was pain involved, it usually stopped. I mentioned it to my doctor who told me to see my dentist. But I wasn’t due for a check up and it mostly went away until a Friday night in early July when I was awakened shortly after I fell asleep by the most astounding pain I had ever felt. It crept up the right side of my face like an un-remitting labor pain. I couldn’t speak: tears were rolling down my face. I didn’t want to go to the ER and I spent four pain-racked nights before I could get to see a dentist. (Note it only attacked me at night: during the days I was perfectly normal.) My dentist banged on all my teeth, but couldn’t trigger an attack. He took x-rays and after muttering “tic douloureux” he personally picked up the phone and made me an appointment with a diagnostic dental surgeon for the next day. A fancier office, words like maxillary surgeon, more pounding on the teeth. “It is not TMJ” was his verdict and he too personally got on the phone to make me an appointment next day with a neurologist, an adorable man called Boris who is the first doctor I have ever met with a sense of humor.

I’m going to make this short: it upsets me to write about it. Boris prescribed a drug called tegretol. It took away the pain, but had horrendous side effects. I threw up, walked like a drunken sailor and all my limbs twitched. Just as I was getting used to the drug, the pain came back, though by no means as harsh. Last week Boris upped the dosage and gave me a slow release form of the drug.

The situation is much better now and I promise not to write about it again. But if anyone reading this ever suffers the same problems, or knows someone who does, here’s a place to start. It tends to afflict women over 50 and almost always on the right side of the face, so I fell right into the demographic. Apparently it sometimes takes years to be diagnosed, but thanks to three wonderful doctors, it only took me four days.

Boris claims that my body will adjust to the medication. I can’t stop sleeping, I suspect my short-term memory is even worse than usual and my hands are quivering badly: typing and writing are an adventure, but I am grateful to be one of one of the fortunate ones. Otherwise I would be writing an agonizing blog that callous people like me wouldn’t read.


Ann said...

I am so sorry to read this, Beryl. I'm not going to go on and on, but I will keep you in my prayers. I think maybe part of what makes me not want to read those blogs (though I understand how some might, for support and educational purposes) is that the primary identity, at least online, gets defined to be "the disability," or "the disorder," or whatever. I think it's the nature of blogs that people aren't known in the fullness of who they truly are -- at least not for a long time. So your identity becomes your illness. That's not for me! Still -- I'm praying.

candyschultz said...

I too hope it gets better. You don't say what the prognosis is. Will it just go away or is it permanent?

Anonymous said...


I am so sorry that you are going through this. TMJ can be all consuming. You may want to consider finding a neuromuscular dentist in your area before you explore surgical options.

I do understand how painful this can be. I have been through 2 prosthesis systems, and just finished an experimental treatment actually growing a new TMJ for me.

Educate yourself and be proactive. There are several online forums if you would like to ask questions.

Good luck with everything! I pray things settle down for you.

Maggie May said...

I am really sorry that you are suffering from this terrible condition. I have read about other people who found it terribly painful.
I pray that it will go as quickly as it came.