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 defeated.
Did he have to Google trigeminal neuralgia? Did he finally look through my medical history? Regardless, he finally agreed to transfer my prescriptions to the pharmacy near my hotel.
Long before this episode, I should have learned my lesson to always travel with my meds, but I still hadn’t. The episodes happened so irregularly and unpredictably…but that’s exactly why I should have carried my medicine at all times.
…After Episode…
A year later, I was struck again, this time in the early morning hours while traveling with friends in Minnesota. As they slept, I searched online for a nearby Walgreens. I found one and requested to get my meds transferred, then moaned and rocked in the backseat of an Uber as the driver eventually grew silent after reminding me to buckle up. I couldn’t focus on anything but getting the medication that would arrest my shooting waves of pain. It was during that early morning ride that I made myself a promise to keep my meds with me always.
After that, my episodes increased in frequency.
…After Episode…
When another event hit during a family gathering in Michigan, my youngest son saw me for the first time in a full-blown episode. He sat by my side, asking what he could do to stop it.
“Nothing,” I replied. I just kept apologizing repeatedly — praying that my meds would kick in quickly.
Thanks to that episode, I finally recognized how to spot an oncoming attack and get ahead of it with my medication. Before, my optimism convinced me that things might pass; now, I took my meds the second I felt a slight twitch in my throat/ear/jaw/cheek/tongue/lip. I stopped waiting until things “got very bad” before acting.
For several years, I managed my episodes this way, catching them before they blew out of control.
…After Episode…
But then, on March 10, 2023, during a day trip to Battle Creek, Michigan, I had my worst episode ever. I can still remember how it played out:
The outside air is freezing, and as I walk from the Battle Creek Amtrak terminal to a nearby coffee shop, I inhale a gust of sharp, icy air. I feel a light spasm in the back of my throat, but tell myself it’ll go away because it has to, goddammit — I’ve (once again) left my pills at home.
An hour later, in the Amtrak terminal waiting for our train back to Chicago, Eric grabs a Snicker’s bar from the vending machine. I take a small bite and immediately feel an angry, uncomfortable pulling in my throat. It feels like I’ve blinked and developed a horrible case of strep throat. We board the train, and over the next 20 minutes, the waves of pain increase in intensity, similar to contractions during labor. I hold my breath as the pain ramps up, fixing my eyes on the landscape rushing past us, then grip the armrest (or Eric’s hand) when it subsides, trying to steel my frayed nerves, bracing for the next round of shocks.
We exit the train in Kalamazoo to grab lunch at Bell’s Brewery, but I can barely touch my food — or speak. As the waiter brings our final bill, I have one hand on my right cheek and my phone held up to my left ear, explaining to my neurologist’s nurse, once again, it seems, that I am out of town and in the midst of an attack. Bless her heart, she immediately phones in a prescription to the local drug store.
Standing under the fluorescent lights of the pharmacy, I must look like a deranged woman mumbling to herself as Eric speaks to the pharmacist. In this moment, I want to do anything to make the pain away, and I scare myself when I start to wonder how quickly I’d die if I were to walk onto the nearby railroad tracks.
When the medication is finally in my system, I don’t feel relief for close to three hours. Is this normal? Are my episodes getting worse? Have I developed a tolerance for the meds? By the time I’m home and in bed, I’ve scheduled an appointment with my neurologist.
Per usual, these horrible episodes are typically followed by a period of normalcy, in which the pain, spasms, and raw, electrified nerves fade into memory like a fever dream. I’m glad it’s over, but I live in fear that it’ll come back with a vengeance. Though I’m grateful it’s done, I still feel it in my bones.
A few weeks later, I meet with my neurologist, and he switches up my meds. He says this is common, that pain is a tricky business, and that there are many therapeutic options to choose from. If we run through all the meds available, there’s always surgery.
Over the years, I’ve been prescribed anti-convulsants, muscle relaxants, and tricyclic antidepressants to treat my trigeminal neuralgia. I’ve tried combinations of Oxcarbazepine (Trileptal), Gabapentin (Neurontin), Topiramate (Topamax), Lamotrigine (Lamictal), Phenytoin (Dilantin), Dexamethasone (a steroid), Cyclobenzaprine (Flexeril), Carbamazepine (Tegretol, an anti-convulsant), Hydrocodone-Acetaminophen (for pain), Alprazolam (Xanax, to calm my panic), Sumatriptan, and others.
For a time, I tried to anticipate when things might happen, especially since the episodes — more often than not — occurred a) during colder months and b) while I was out of town. But, recent episodes closer to home in warmer months have disproven my theory. I’ve let go of any expectations about how this will go. I’m committed to taking things day by day, and making sure I’m prepared for these episodes, over which I know I have no control.
In May, 2023, while facilitating a writing workshop at a retreat in Arizona, I befriended a lovely woman named Stacey. Later that year, I’m devouring a podcast by Dani Shapiro in which she interviews my fellow Substacker, Kimberly Warner — a documentary filmmaker who spotlights people who, like her, live with and manage (often invisible) chronic health conditions. Warner lives with a rare, neurological disorder, MdDS, which led to her larger advocacy role within the chronic illness community. During her interview on Shapiro’s Family Secrets podcast, Warner mentions trigeminal neuralgia.
I’m floored, since I rarely, if ever, hear the term outside of my neurologist’s office.
It turns out Warner has written, filmed, and produced a docu-series that includes Rene Morales — a husband and father managing trigeminal neuralgia. As I watch it, I can’t help noticing how familiar Morales’ wife looks. Then, it hits me: I’d met Morales’ wife, Stacey, earlier that year in Arizona. Though we’d never spoken of her husband’s condition, the universe, it seems, was working hard to introduce me to Kimberly Warner and her production company, Unfixed Media:
I can't say enough about Kimberly Warner and her passion to advocate for those with chronic conditions. Were it not for her docu-series, I might still be quietly managing my invisible illness, feeling alone and often misunderstood. Seeing Rene Morales’ story was a massive relief for me. In his story, I recognized my own. I now understand the importance of speaking up, especially about issues people cannot see.
Those who've been with me during an episode will attest that I curl up in tears, holding my head, desperate to make the pain stop, unable to focus on anything but getting to the “other side” of the pain. It's the worst pain I've ever known (and I’ve had a baby without an epidural, thank you very much).
The feeling of helplessness during my attacks is beyond description — for me and for those around me.
For those interested, here's a link to Kimberly Warner's Unfixed documentary, described as "a tapestry of stories of twenty unforgettable people":
In it, Warner trains a spotlight on individuals with conditions like cancer, Tourette Syndrome (TS), Traumatic Brain Injury (TBI), mental health challenges, and many other unseen neurological conditions, like mine.
While Warner was filming the documentary, the pandemic interrupted her efforts. One of her subjects (who, like me, manages trigeminal neuralgia), said of lockdown, "In some ways, people in this country are getting a little taste of what it's like to be in the unfixed community...what it's like to live in a world that is unpredictable...and uncertain."
I'm grateful for Kimberly Warner and her efforts with Unfixed, and for all those willing to share their chronic health journeys. Thanks to them, I feel seen, understood, and far less alone living with an invisible illness. I hope that by sharing my journey with trigeminal neuralgia, others might feel the same.
My wish for Trigeminal Neuralgia Awareness
I hope more people now understand what trigeminal neuralgia looks like, sounds like, feels like, and is confused with. I hope more doctors realize sooner that what seems like a toothache or an ear ache might be an episode of trigeminal neuralgia. I hope more researchers explore drugs and remedies that address the debilitating pain of this condition, and that more mental health professionals are made aware of this invisible disorder.
Resources
Facial Pain Association (FPA) — formerly known as Trigeminal Neuralgia Association — is a non-profit 5013c volunteer organization established in 1990 that assists those with neuropathic facial pain and benefits patients and healthcare professionals alike with education, personal support, and research.
Facial Pain Research Foundation (FPRF) was established in 2011 with one singular mission: find a CURE for trigeminal neuralgia and related neuropathic facial pain, while also developing therapies to permanently stop other nerve-generated facial pains and diseases.
International Headache Society
U.S. Pain Foundation
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Christine Wolf is a memoir coach and the author of Politics, Partnerships, & Power: The Lives of Ralph E. and Marguerite Stitt Church. She’s also the founder of Writers’ Haven LLC, a workspace dedicated to serving writers near Chicago. She facilitates and leads workshops on live storytelling, memoir, and expressive writing for emotional healing. Check out what others have to say about working with Christine, then get in touch at christinewolf.com/contact.
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