Correction: In this week’s edition of The Local, I incorrectly named Brenda Sharp. I apologize for the error and any inconvenience it may have caused, and thank you, Brenda, for sharing your story and for being such a good sport about the error. — Penny Coles
Every single person who has experienced trigeminal neuralgia knows exactly when the pain started. It’s like you always remember where you were when the President was shot, or what you were doing when the Twin Towers were hit. It’s that profound. It’s when your life changes forever.
For me, I was a 25-year-old stay-at-home mom, just doing some household chores one morning. Then out of the blue, I felt a searing pain in the right side of my face. It came on without warning, but almost knocked me to the ground. It left as quickly as it had come. I thought, “wow…I’d better get to a dentist, I must have an exposed nerve or something.” But I let it go until a week later when it happened again. This time there were more lightning shots, each one a few minutes apart.
That was the start of a five-year hell where I was consumed with pain, and ultimately medicated so strongly I could barely function.
I’m 62 now, and have been relatively pain-free on and off for more than 30 years, but it’s been a long journey getting to this stage. I still have flares or attacks occasionally, but they are not as painful as the original attacks, and I am able to manage them much better.
What I’ve learned about the disease: trigeminal neuralgia is a chronic pain condition that affects the trigeminal or fifth cranial nerve, one of the most widely distributed nerves in the head. The typical or “classic” form of the disorder causes extreme, sporadic, sudden burning or shock-like facial pain that lasts anywhere from a few seconds to as long as two minutes per episode. Eventually, the pain just keeps striking with little or no relief in between. The intensity of pain can be physically and mentally incapacitating, and TN is commonly referred to as the suicide disease, for reasons you can just imagine.
Getting diagnosed was not an easy task. Dental X-rays confirmed that there was no problem with my teeth. The ear, nose and throat specialist operated on my sinuses, thinking there was a problem there. In those days (early ’80s), it was thought that TN only affected the elderly, and as a young woman in my 20s, I didn’t fit the profile. However, trigeminal neuralgia was eventually suspected and I started down a five-year drug-induced path of anti-convulsants and narcotics.
My family doctor referred me to a neurosurgeon, in Toronto who confirmed the diagnosis. When the attacks started coming more frequently, I was offered a destructive procedure where a large needle is inserted into the face and through the nerve, and glycerol is injected. This is an alcohol like substance which is corrosive to nerve fibres and can mildly injure the nerve enough to potentially hinder the pain signals. It was an extremely painful procedure for me, and ultimately failed. I was left with severe numbness on the right side of my face, but the pain remained.
I learned there were some triggers for me. If a light breeze brushed across my cheek, either from an open window or air conditioner, or the outside wind, it would inevitably set the pains firing. Sometimes I would just roll over in bed, and the sheet brushing my face would set it off. I would get up and go downstairs so the rest of the family couldn’t hear me sobbing in agony.
I wondered how long I could possibly endure this painful existence. Early on, there had been small remissions, sometimes days, sometimes weeks and even months, glorious pain-free days where there was no sign of this invisible, insidious disorder.
Then one day, the pains started firing every few seconds, and there was no reprieve in between. I lay writhing on the floor, screaming and sobbing. My husband (at the time) couldn’t handle it anymore, and drove me to the hospital emergency room and left me there. There wasn’t anything they could do for me there either but watch me rock back and forth on my bed with my head buried in a pillow so as not to disturb others with my screams.
This was probably the lowest point for me, when I decided I just couldn’t go on living like that anymore. I tried to figure out what the best way would be for me to end my life. How much medication could I take to finally end the pain once and for all? I was sure my family would be happy to be relieved of the burden of my illness.
But instead, I called the neurosurgeon again, sobbing on the phone. He told me there was a relatively new procedure, called MVD (microvascular decompression), which is brain surgery, and he would be willing to operate on me. I was scheduled for surgery on Friday the 13th in June of 1986, and I wondered if that was going to be unlucky.
During the surgery, the surgeon found a blood vessel had looped off and had been pressing on the trigeminal nerve. It had gone on for so long that there was a deep groove in the nerve. He was able to separate the two and insert a Teflon pad in between them to prevent further contact.
Recovery was slow. I spent a few days in ICU with extreme nausea and head and neck pain. I temporarily lost my hearing. My dear mother didn’t want me to feel self-conscious about my shaved head, so she went to the hairdresser and had her hair shaved off too.
Exactly two weeks later, that old familiar pain suddenly hit me again. I was devastated. Thinking I was back at square one, I went back on the medication. But the surgery had been deemed a success, and healing just took several months longer than I had anticipated. The pain gradually receded, and after about one year, I could say I was finally pain-free.
I was then weaned off the drugs slowly and slowly started to live my life again. A national support group had been started up in the U.S, and I became a member. There were biannual conferences where neurosurgeons and TN patients from around the world gathered to learn from each other.
After moving to Niagara, I started up a local support group. Whereas there had been no one I could talk to at the time back before internet and social media, we now had an opportunity to come together and support each other.
There are still thousands of TN patients suffering today. It frustrates me that there have been no real advances in the past three decades that come anywhere close to a cure for this disorder.
Newly diagnosed patients are still prescribed the same medication that I was more than 30 years ago. And there have been no new surgical procedures that could offer any further hope. Not everyone is a candidate for the surgeries, and the current meds are proving to be inadequate.
Awareness is needed. Research is needed.
I live in St. Davids now, and have recently begun volunteering for the Facial Pain Research Foundation as their volunteer fundraising coordinator. Everyone can do something, no matter how small, to help bring awareness to trigeminal neuralgia, the patients, the treatments, and the new research that is happening today dedicated to finding a cure.
Anyone who is experiencing facial pain, or has been diagnosed with trigeminal neuralgia is encouraged to reach out to me for support at firstname.lastname@example.org or 289-929-6395.
Oct. 7 is known as Trigeminal Neuralgia Awareness Day, and we have almost 200 landmarks, bridges or buildings around the world (many right here in the Niagara region) which are being lit up in teal this year to help raise awareness.