Trigeminal Neuralgia is a chronic nerve disease where the pain starts at the jaw and runs along the side of the face. The nerve seizes sending electric shocks or stabbing pain into the face. This is my story of living with trigeminal neuralgia.
When I was 52, my car was rear-ended on my daily commute to my programming job at Carnegie Mellon University in Pittsburgh. This was the fourth time in eight years that this happened. Each time, I was minding my own business, sitting at a red light or in traffic, when BANG.
This accident wasn’t a major one, however, I suffered yet another whiplash and concussion. Unlike the first three accidents, after seeing countless chiropractors and acupuncturists, receiving steroid shots, and going to physical therapists, this time I experienced something new. Besides the constant neck pain from the whiplash, a searing pain ran from my left jaw and into one of my top teeth. My first seizure felt like a lightning strike. It lasted only a couple of minutes, but it was terrifying. I thought it was a stroke, but the doctors could find nothing wrong. After that, the seizures happened several times a day, sometimes lasting just a minute or two, sometimes for ten minutes or more.
I had to go on living with Trigeminal Neuralgia
Because I had no visible abnormality, the doctors dismissed my pain and dizziness, thought I was exaggerating, or said it would go away if I exercised. They gave me medication for depression and vertigo. I looked completely healthy. Even two of my sisters accused me of faking. After six months, my short-term disability ran out and without any answers about the source of this pain, I had to go back to work.
Trying to code my assigned project, attend meetings, and do everything a software engineer must do was a daily struggle. My algorithms weren’t right. I forgot basic syntax. The litany of medications that I had to take to numb the pain left me barely able to stay awake.
Some days, the electric-type shocks felt like the worst toothache, so what could I do?
Go to the dentist!
After x-raying my tooth and finding no infection, my dentist was sure a root canal would help. I was desperate. He had been my dentist for years, so I believed him. I paid him $1500 to ruin a perfectly good tooth! He was enriched. My pain remained. I found a new dentist.
And then I was rear-ended again!
It was pouring rain, and again, I was sitting at a red light in a line of traffic. The light turned green and traffic began to move. The driver behind me decided my lane was moving too slowly. He thought he could cut over to the next lane, gunned it, and clipped my back left bumper so violently that my car spun in a half circle. My front right tire hit the curb, twisting my neck in all directions. Dazed, I pulled over and got help. My career at Carnegie Mellon was over.
After this, the fifth accident in nine years, my brain felt like mush. The doctor said it was Repetitive Brain Trauma and there was nothing he could do. My neck was so stiff. I couldn’t sleep. On the rare occasion that I did sleep, the next day I was in misery from the pain. For three years I went through the motions of living. I wasn’t sure how much more I could take.
There is help
Finally, I was referred to the UPMC Headache Center where I was diagnosed with Trigeminal Neuralgia and Temporomandibular Joint Disease. (click the links to learn more about these diseases)
I was fitted with a bite plate and besides the plethora of pain medication and muscle relaxers that I had been taking, I was prescribed carbamazepine and baclofen for the nerve pain. Slowly my pain became bearable. The bite plate helped the TMJ and I could find rest once in a while. The carbamazepine and baclofen caused the pain and the number of seizures to lessen.
I learned some things to help the seizures. Avoid eating anything cold. Brush my teeth carefully with warm water, and stay inside or wear a hood or scarf in the wind. I am one of the lucky ones who got relief from medication. Some sufferers must undergo surgery. Unfortunately, my age and the unpredictable nature of the seizures left me unable to work a steady job, but I needed to be productive.
Life goes on
Before my accidents, I had been an avid genealogist. Years earlier I had tried to write a novel about my findings of one particular ancestor, Catherine Cathillon who endured so much during her life that I thought the world should know about her.
I tried to envision myself in 1585 and realized that my ancestors faced much worse problems than I could imagine. Click here to read more of the history I found.
Because of my health problems, finishing my book took me more than ten years, but I finally got From the Drop of Heaven, published in 2022. Brown Posey Press, a subsidiary of Sunbury Press offered me a contract. Since then, it has won five literary awards. In 2024, it was released by Beacon Audiobooks.
When life gives you lemons, make lemonade
Though my health problems prevent me from marketing my book as I should, I do what I can. I try to look on the bright side. If not for the accidents I probably would never have finished my book.
For all those people out there suffering, don’t give up!