- Posted October 7, 2013 by
This iReport is part of an assignment:
The written word: Your personal essays
Living with the Pain--My Life with Trigeminal Neuralgia
That marked my first trip to the orthodontist to try to solve the problem. I thought my permanent retainer—a small wire that is cemented to my bottom teeth—had came loose. Two hours later, I was leaving my doctor’s office in tears because he insisted that nothing was wrong with my teeth. I went back to school and sat through another week of classes, Homecoming events, and sorority socials with this jabbing pain in my jaw.
Each day it got worse. At first, it hurt when I tried to eat, but the pain was manageable. Then it started to hurt when I brushed my teeth, but still, I could deal with it. On one of the worst nights of that first month, I remember trying to eat dinner, but just the thought of chewing my food made me cry. For the next two days, I couldn’t eat, because it just hurt too much. That round of pain, spurred me to make another trip to the dentist, thinking that maybe—hopefully—I had an abscess, something that could be fixed. But I couldn’t be that lucky. The dentist said my teeth were perfect and sent me home with some toothpaste for sensitivity. I made 5 trips to the dentist, all with the same complaint, and the same results. My dentist took X-Rays, and tried coating my teeth with a sealant to prevent sensitivity, and then tested for broken enamel by touching each tooth with liquid nitrogen, trying to stimulate the pain. Nothing worked.
By January, I was given some steroids and was making plans for a root canal, when this mysterious pain disappeared just as suddenly as it had came appeared. For six more months, I was pain free, and those six months were wonderful. In July, in the middle of my family vacation, the pain reared its ugly head once again. It was back, and worse than it was the first time. This time, I skipped the dentist and went straight to my primary care provider. I described the pain as best I could, a sharp, stabbing sensation that started in my jaw and continued up to my ear. She thought I was making it up, gave me steroids, and insinuated that I was looking for a drug-seeking patient. I have never been more embarrassed and humiliated in my entire life. I am from a tiny town in southern West Virginia where abuse of prescription medications is not unheard of, but I am going to be a doctor, and have worked so hard to get into medical school, and for someone to say that about me, I was furious!
To prove to myself that I wasn’t just making up this mysterious pain, I took to the Internet. Searches turned up fibromyalgia and TMJ, but my symptoms weren’t exactly the same. Finally, at my wits end, in the middle of the night, I Googled, “facial pain” and, BINGO!, there it was. Trigeminal neuralgia. My symptoms fit everything about this condition perfectly. I went to the doctor the next morning and told her everything and she agreed. In fact, her aunt had been diagnosed with the same condition a few years before. Finally, someone agreed with me! To have trigeminal neuralgia at my age, was a bit unsettling to my doctor. The next months were spent going to doctors’ visits and have various medical tests performed to rule out a brain tumor or multiple sclerosis, and those were some of the scariest months of my life. I was a 20 year old, med school hopeful, trying to deal with the fact that I may have brain cancer or MS.
Now, two years after my original diagnosis, I am in the middle of the worst flare of TN that I’ve had. The pain has been literally debilitating this weekend. I have barely left my bed, because the simple act of moving my head has caused blinding pain on the right side of my face. I have spoken to almost no one, eaten only what doesn’t require chewing, cried while I was brushing my teeth and washing my hair, because talking, eating, and brushing my teeth all my cry. My doctor gave me a prescription for pain medicine to take during a flare, but those haven’t worked. The prescription for gabapentin that is supposed to stop the nerve impulses to the trigeminal nerve has stopped working.
I know that the pain is only going to get worse and it’s something I will be forced to live with for the rest of my life. It’s a scary, sobering thought to think that I may never have another day where I don’t experience some sort of pain. It’s horrible to hear the fear in my mom’s voice when she tries to find some way to ease the pain, even though we both know nothing will work.
As a future health care provider, I hope that in the span of my practice, there will be more options. The medicines that are currently available only worked for a limited period, until the body develops a tolerance to the drug. Once that happens, it’s on to the next drug, this one more debilitating than the last.