When were you diagnosed with trigeminal neuralgia? I first felt the pain 20 years ago, when I was 43, but I didn't receive an accurate diagnosis for another 11 years. Forty-three is relatively young to be diagnosed with trigeminal neuralgia. The average age of onset is usually over 50.
How did the diagnosis change your life? At first, I was angry and felt a sense of loss. I saw myself as abnormal, even sub-human. I was always looking for the next best procedure or medical breakthrough. The pain controlled me; I did not control it.
After attending a conference for TNA The Facial Pain Association [formerly Trigeminal Neuralgia Association], a patient advocacy group, I learned that the condition is chronic. My pain might not end, but it could be managed. I need to be aware of triggers, take medication regularly, and stay one step ahead of the pain. Once my perspective changed and my life improved, I wanted to help others, so three years ago I became a support group leader for TNA.
How have research and awareness changed since your diagnosis? Fortunately, there is more information available today for people with facial pain and their doctors. The TNA website is a valuable resource. There are also more effective treatments these days, including microvascular decompression and various radiosurgery and radiofrequency lesioning techniques.
How do you stay positive? My family and friends help. In fact, the best antidote for pain is my 3-year-old grandson, Kyle. Staying very busy also helps by keeping me focused on something other than pain. My therapy dog, Bessie, and I visit hospital patients, support victims of domestic violence, and work with children in a "read to the dog" program. I agree with [author, activist, and first African-American Congresswoman] Shirley Chisholm, who said, "Service is the rent that you pay for room on this earth."
What advice can you give to others in pain? No one deserves to be in pain. But if you have pain, you do not need to suffer. I know that if I have a bad day today, tomorrow will be better. Cures are on the horizon. I used to hide my condition, but life became better when I began to tell my story. For me, trigeminal neuralgia is a tiny piece of a very full, loving, productive life.