Carol Bloom, FPA Peer Mentor and former Support Group Leader
My name is Carol Bloom, and I am a peer mentor with the Facial Pain Association. I had my first episode of trigeminal neuralgia (TN) when I was 26 years old. I am now 73 years old, and TN has finally become a smaller part of my life. At times I felt it was the devil that lives within me, but I have learned over the years to make peace with it. When I had my first episode, I was out shopping, and I thought I had been struck by lightning. The pain was intense and frightening but it left as quickly as it started. Then began my long and arduous search for answers.
At that time in 1976, TN was considered an “old woman’s disease” by the medical community. Not much was understood about how debilitating and life changing it could be. There were few options for treatment and even fewer physicians who understood the cause.
For the next 15 years, the frequency of the episodes grew, and the intensity of the pain became worse. I never knew when it would happen or how long it would last. During those years, I saw several neurologists who all said I was too young to have TN and told me to learn to live with the pain. Finally, the anesthesiologists I worked for noticed what was happening and recommended I see a new doctor. Fortunately, my new physician recognized my symptoms and recommended a short course of Tegretol (carbamazepine) to see if it would help. For the first time in years, I was pain free. I continued taking Tegretol for 3 years with success, and I was now looking for a neurologist in case the medicine stopped working. It took time, but I was put in touch with a neurologist who was very interested in TN and wanted to see me.
For the next 5 years, I stayed on Tegretol, but began to have problems with my white blood cell count dropping, so I stopped taking Tegretol and tried baclofen, Elavil (amitriptyline), and gabapentin. They helped a little, but TN was starting to take control of my life again. Since we were running out of options, it was recommended that I see a neurosurgeon. An MRI revealed that a major artery was wrapped around my trigeminal nerve three times and an MVD was recommended. I had the surgery, and for 6 months, I was pain free.
Unfortunately, I had suffered for so many years that permanent damage had been done to the nerve. The pain returned, although not as severe as before. Around that time in 2005, Trileptal (oxcarbazepine) was being recommended to treat TN. I began to take it, and after a short time and the right dose, my pain began to lessen. I have taken Trileptal ever since. I still work with my neurologist to adjust the dose if I have an episode, and then return to my regular dose of 600 mg twice a day.
My TN is not completely gone but it is controlled. I am thankful for my coworkers realizing the kind of pain I was in, and for my neurologist being knowledgeable about TN, listening to me, and working with me to find a way to mitigate and manage my pain.