'I Thought I Had An Ear Pimple. Then I Was Diagnosed With A Rare Condition That Paralyzed Half My Face'
Two and half years ago, I had just finished putting in the final semester grades for my counseling class at Laval University when I felt a cramp in my right ear. I didn't know what was happening, but I assumed it would pass.
The next morning, I woke up with a lot of pain on the right side of my face, where my jaw and right ear connect, but I chalked it up to stress. I was used to feeling jaw tightness on occasion when I had a lot on my plate. But a few hours after that, I started to notice a strange twitching on the right side of my face. This does not feel normal, I thought. A few hours after those first twitches? I couldn't even blink with my right eye anymore. The twitching got even worse—and I went to the hospital.
Doctors first diagnosed me with Bell's palsy, which is temporary weakness on one side of the face. It usually resolves itself in a few days or weeks. So I was given prednisone (a prescription glucocorticoid drug used to bring down inflammation) and sent home.
A week later, though, my symptoms became worse.
It felt like my head was on fire, or as if someone was stabbing me in the face.
I had also developed three ear sores in my right ear but wrote them off as pimples. But when I went to the hospital for the second time, the doctor told me that those sores, along with the rest of my symptoms, were all signs pointing to Ramsay Hunt syndrome, adding that the condition was much worse than Bell’s palsy—and there was an 80 percent chance of permanent damage.
I'd never heard of Ramsay Hunt before my diagnosis—but it's essentially shingles of the ear. (It's caused by the same Varicella virus that's responsible for chickenpox and shingles.) According to the National Organization for Rare Disorders (NORD), it's a rare neurological disorder characterized by facial paralysis (due to the way nerves in the ear and face are impacted) and a rash. It may also lead to hearing loss and other life-altering issues including vertigo, facial spasms, hearing loss, and eye pain. This disorder is more common in adults over 60, which is why my doctors were so shocked to see someone in their 20s experiencing such debilitating symptoms of the disorder.
I had to reinvent myself at 28 because I didn't know what my life would look like moving forward.
After my hospital visit I was sent to an ear, nose, and throat (ENT) specialist, who gave me the necessary medications to (eventually) save my face, including high doses of prednisone tapered out over the course of a month and a half. Corticosteroids and antiviral medications are common treatments for people who experience Ramsay Hunt, but they don't always work. Thankfully, my face returned to it's original state (aka what I looked like and how I could move it pre-Ramsay Hunt), but it was a *long* and slow process.
Initially after my diagnosis, I continued to experience hearing issues and nerve pain in my head. I had to tape my eye shut at night because it wouldn't close on it's own. I wasn't able to watch television or go on the computer. I couldn't go shopping or out with friends. I lost my entire social life and was completely isolated at home, as I had to keep visits infrequent because I couldn't handle the noise of too many visitors. For two and half years, every single sound felt as if it was all around me at all times. I couldn't tell which direction to listen or look.
My family tried to adjust to my new condition, but the holidays during the years after my diagnoses were awful. My mom's side of the family is Italian, so we would have a big Christmas feast. But the last few Christmases I ended up in my cousin's childhood bedroom alone, and I could only have people come visit me two by two because I couldn't handle the noise of a crowd any larger than that. Even when my family would come upstairs, I could really only handle 45-minute conversations with noise-canceling headphones on. Then, I'd nap for hours after just to build up my energy again due to the extreme fatigue I felt.
I also couldn't do my job anymore as an associate professor, or continue my mentorship with the teenage youth group that I worked with pre-Ramsay Hunt.
So, I started a Youtube channel. I felt like I needed to have more purpose than staying at home in silence.
I couldn't find a place where people were consistently talking about rare chronic illnesses online—and I needed that community. I knew I couldn't change what happened to me, but I could change how I responded to the difficulty I faced, so that's what I set out to express online via my videos. Often times I'd talk about my symptoms that day, red flags people shouldn't ignore, and how to maintain self-care even when you're sick.
My vlog started as a small personal thing, but now I get messages from people all over the world who are learning how to accept where they have to rearrange their career and adjust how they operate in the world as a result of a debilitating illness or injury.
Post-diagnosis, I was forced to decide what I wanted my life to look like in the event that the side effects of Ramsay Hunt never went away (I honestly wasn't sure at that point if my condition would cause chronic issues). So, I also opened my own private practice as a therapist in 2018, while I was still sick. I have my Master's degree in counseling but wasn't doing anything in that field explicitly before being diagnosed. I focused on one-one-one counseling and finally felt like I had learned my value, while accepting the new limitations in my life.
It wasn't until October 2019 that I felt somewhat like my old self again.
Two years after my diagnosis, I was still experiencing random facial spasms and a lot of anxiety. It felt like parts of my brain had stopped talking to each other, and that my nerves were on red alert all the time. I also still had periodic tremors in my hands and arms. The thing is, I became more accepting of these symptoms and limitations because I had come to terms with my new reality.
One day, the mother of one of my Youtube subscribers recommended Ottawa Performance Care (OPC). Up until now, I'd been listening to my doctors who kept telling me that they were optimistic that my symptoms would take care of themselves. Plus, I'd gotten used to them. But I figured it was no harm trying something new and outside the realm of Western medicine. So I went to OPC for a week's worth of treatment for two hours a day, doing neurological exercises to help repair my nerve damage. And after only the first two days of treatment, I no longer had to wear my noice-canceling headphones.
The night of my second treatment, my mom and I went out to dinner for the first time at a public restaurant in two and a half years (no headphones, just us!). And for the first time I could tell where a specific sound was coming from. That was the first moment I felt like myself again.
I'm working on a whole new set of goals and advocacy plans to help others going through a health issue that rocks their world.
My treatment from the Ottawa center has given me so much more confidence, and I'm ready to tell my story on even bigger stages and platforms (without any protective headphones!). I spoke at a conference in January, which marked my first time speaking to a crowd with a microphone in over two and half years. It was dream come true. I thought speaking in front of crowds was over for me—but it's not.
And as far as teaching goes? I'm hoping to start with online counseling courses. The conference I spoke at was a one-off event, and I'm not quite sure I'm ready for big crowds on a regular basis until I feel 100 percent better. But I'm hoping I can work up to it and later this year, hopefully in the fall, I'll be able to teach in person. If there's one thing Ramsay Hunt did for me, it pushed me to adapt and change my life (and career) in ways I never thought would be possible.
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