How it started… One night in my early 40s, I woke with a sudden, stabbing pain that tore through my face and ear. The pain was so unfamiliar that I went straight to the mirror, looking for signs of swelling… or a bruise… or even torn skin, but … nothing. The pain felt like an ice pick repeatedly stabbing my cheek, the back of my throat, and my ear. If I touched my skin, I felt like I was being electrocuted. Why was this happening? What had I done to cause this pain? How could I stop it? I had no answers. I crawled back into bed, cradling my cheek in my hand, rocking back and forth as my eyes darted through the darkened room. The waves and spasms of pain in my face were agonizing — like shards of hot glass mixed with jolts of electricity just under the surface of my skin. Though I was in the safety of my bedroom, I felt like a cornered animal. Somehow, I forced myself not to scream. I remember worrying that the neighbors might think I was being beaten. Later that night, ibuprofen didn’t touch the pain, so I thrashed around in bed, trying to get comfortable. My face was so sensitive that my pillowcase — or even a stray hair or a gentle puff of air — felt like weapons of assault. After about two minutes, the pain stopped. Out of breath, exhausted and bewildered, I quietly cried myself to sleep. The next morning, I felt beaten up. I’d convinced myself I had an ear infection, and after dropping my kids at school, I made an appointment with my primary care doc. A 6-Year Journey To Diagnosis “Weird,” my doctor said. “Your ear doesn’t look infected.” Still, he prescribed antibiotics, and that was that. Since the pain didn’t return, my suspicion seemed correct. Until… Six months later, the stabbing pain in my face returned. This episode lasted ten brutal minutes, and it brought me to my knees. The affected areas included my ear, my cheek, the back of my throat, and my eye socket. Once again, it happened at home. Once again, I had a doctor check my ear. Once again, no signs of infection. This time, though, he recommended I see a dentist. The dentist, after a thorough exam and X-rays, concluded that my pain was likely due to a deep infection we couldn’t see. “You probably need a root canal,” he’d said. I finally got in to see a periodontist and had the root canal. Compared to the facial pain I’d been through, a root canal felt like a cakewalk. I left the appointment feeling hopeful. But, when another attack hit not long after, the periodontist urged me to come back in — for a second root canal. As I left her office, I thought, Please…let this nightmare be over. And, for quite some time, it was. And then, it happened again — this time on the other side of my face. I went straight to the Emergency Room, where they flushed out my ears with saline solution and concluded that a heavy wax buildup was the problem. I was schooled in keeping my ears cleaner, then advised to follow up with an Ear, Nose, & Throat doc (ENT). As I drove to meet with Dr. Ilana Seligman, who’d previously performed eustachian tube surgery on one of my kids, I expected to hear that I, too, was a candidate for ear tubes. I was NOT prepared for her suspected diagnosis of tic douloureux (French for “painful tic”)…also known as trigeminal neuralgia…also known as TN…also known as the suicide disease. Dr. Seligman prescribed pain medication (in case another episode hit) and referred me to a neurologist who could formally diagnose my suspected condition. After a clinical exam and MRI, my new neurologist, Dr. Richard Munson, confirmed the diagnosis: trigeminal neuralgia. It took six years — and as many doctors — to finally get the diagnosis. What Is Trigeminal Neuralgia? According to the Mayo Clinic, trigeminal neuralgia is “a condition that causes excruciatingly painful sensations to your face, similar to an electric shock. It's not rare, and it's often misdiagnosed as dental pain or a sinus issue.” From an interview with Dr. Richard Zimmerman, a Mayo Clinic neurosurgeon: "It's like this hot poker or this electrical shock-like, stabbing pain. They don't know when it's coming," says Dr. Zimmerman. Usually, it results when a normal blood vessel makes contact with the trigeminal nerve at the base of the brain. Less commonly, it can be caused by tumors, either on or compressing the nerve. "The best analogy is as if there's a short circuit occurring. The nerve fires abnormally," he says. A National Institutes of Health report on trigeminal neuralgia by Nidhi Shankar Kikkeri and Shivaraj Nagalli highlights the condition’s etiology and mechanisms. The trigeminal nerve (a large bundle of fibers at the base of the brain responsible for sensation in the face) has three divisions, impacting three anatomical areas: * ophthalmic (eye, upper eyelid, and forehead) * maxillary (lower eyelid, cheek, nostril, upper lip, and upper gingivae) * mandibular (lower lip, lower gingivae, jaw, and the muscles of mastication) Trigeminal neuralgia is most commonly caused by vascular compression of the nerve root. The condition is more common in women than men and is often diagnosed in people 50 and older. If it’s found in a younger person, doctors tend to suspect multiple sclerosis. Trigeminal neuralgia affects 4 to 13 per 100,000 people annually. According to a Yale Medicine fact sheet, an estimated 10,000 to 15,000 people are diagnosed annually with trigeminal neuralgia. While preparing to write this piece, I posted a quick note to social media on Sunday, October 7th — National Trigeminal Neuralgia Awareness Day — and I immediately heard back from several people who either have — or support a loved one with — this awful condition. The intention of the awareness day is to spread the word about TN, using hashtags including: #TrigeminalNeuralgiaAwareness #TNWarrior #FacialPainAwareness #SupportTN #FindACureForTN #TNAdvocacy #HopeForTN What does a Trigeminal Neuralgia episode look like? (VIDEO) After I posted to social media last week on Trigeminal Neuralgia Awareness Day, my cousin, who lives near Paris, reminded me that her mother also suffers from TN. With her mother’s consent and with the hope of raising awareness about the disorder, my cousin urged me to share the video of one of her mom’s episodes. WARNING: This two-minute video can be upsetting to watch and hear. The waves of trigeminal neuralgia pain are often described as “11” on a scale of 1 to 10: This is my cousin’s mother, caught on video suffering an attack of trigeminal neuralgia. Following an attack, patients are often out of breath, exhausted, and fearful that another attack is imminent. Loved ones are frequently at a loss, unsure how to support someone during and after an episode. Accepting your Trigeminal Neuralgia diagnosis takes time Upon receiving my diagnosis, my neurologist prescribed a combination of steroids, anti-seizure medication, and opioid pain meds. For the first time since my nightmare began, I felt seen — and prepared for battle. Looking back, though, I wish I’d also had access to a mental health professional who understood the nuances (and practicalities) of the condition. I didn’t know a soul who had trigeminal neuralgia, nor did anyone in my family. And, though I walked around in constant fear of an impending attack, it would take years before I understood how important it would be to carry my meds with me at all times. Episode… Soon after my diagnosis, I had another episode, but I was out of town with friends, and I hadn’t thought to pack my medicine. My episode lasted off and on for nearly two hours. It began when I yawned while walking outside in the windy, winter air. The moment I felt the cold, dry air hit the back of my throat, I felt a sharp spasm…and then, a bright light flashed in front of my eyes. I stood stock still in the middle of the sidewalk as lightning bolts shot through my face and ear. I knew exactly what was happening, but I didn’t have any way to stop it. My friends gathered around as I stood there gripping my ear, trying not to swallow, lest I exacerbate the pain. With my ears ringing and my entire face throbbing with sparks of shooting pain, my friends’ concerned voices felt a million miles away. A few friends admitted they couldn’t handle witnessing my episode, but one friend, Heather, stayed by my side as I called my neurologist’s office from our hotel. Sobbing, I asked to get my prescriptions transferred to a local pharmacy. As Heather and I walked there, I whimpered and moaned as I held my hand protectively over the side of my face, wanting to tear it off my body. While waiting for the scripts to be filled, I paced the pharmacy aisles, knowing (but not caring) that I looked completely unhinged. Once I had the medicine, I started feeling relief within an hour. And, for nearly a year after that, I was episode-free. It was only during this period that reality began to sink in: I’ll likely be dealing with this for the rest of my life. Still, this dawning acceptance didn’t translate into action. …After Episode… A year later, I was at a friend’s father’s funeral in Cincinnati (near the border of Kentucky) when it happened again. This time, I was so out of my mind in pain during the episode that I could barely speak, let alone recall my neurologist’s name. From my hotel room, I dialed my primary care doctor’s office and got the on-call physician who knew nothing of my situation. Even worse, he seemed convinced that I was trying to “work the system” just to get pills. While I know his response was entirely reasonable (we are, after all, living in an ongoing opioid crisis), I was beside myself in pain and quickly lost my s**t. In a hoarse, tearful voice, I screeched at this faceless doctor, asking if he’d ever experienced the pain of trigeminal neuralgia. “I have not,” he said flatly “Be grateful,” I panted, utterly de
