I lost my hearing suddenly due to Ramsay Hunt syndrome. Here’s what I learned.

While on vacation in Turks and Caicos last April, my voice became hoarse, and I struggled to swallow. Pieces of coconut shrimp lodged in my throat and even drinking water to wash it down resulted in it coming out through my nose. The sudden onset of these symptoms frightened me, especially as I was in a foreign country.

I visited an urgent care clinic on the island, where doctors prescribed my first course of steroids, which are used to treat inflammation. I was home days later, and some of my initial symptoms began to ease. However, just as my voice and the ability to eat solid food came back, I experienced pain in my left ear and a loss of hearing. My ear began throbbing like a traditional earache, but it also felt like I had a noise-cancelling headphone just in my left ear. My hearing went from sharp and crisp to distant and distorted, as if people were speaking underwater.

Hearing loss and pain puzzled my doctors

The hearing loss happened within minutes, though the pain intensity had increased over the last few hours. I was so scared that I left work early and drove to the emergency room. Doctors there gave me more steroids and discharged me within a couple of hours.

The rapid changes in my symptoms left my primary care physician, ENT specialist, and neurologist puzzled. They conducted multiple tests to determine the cause, including bloodwork for Lyme Disease and other uncommon illnesses and MRIs and CT scans to rule out the possibility of cancer or a stroke.

Discovering the culprit: Ramsay Hunt syndrome

Viral infections are a common cause of sudden hearing loss. But despite frequent doctor visits and tests, my illness wasn’t discovered until two months after I began showing symptoms, so I was never treated with antiviral medication. Instead, I took prednisone, a steroid that reduces inflammation, for nearly two months. It's often used for people like me, who develop sudden hearing loss in one ear, also known as unilateral hearing loss. The steroids helped me regain my ability to speak and swallow, but my hearing, while somewhat improved, was still at a deficit.

It wasn’t until singer Justin Bieber announced his bout with Ramsay Hunt syndrome last summer that I realized we shared the same affliction. Within days of Bieber’s public revelation, one of my doctors ordered bloodwork to check for the varicella-zoster virus specifically, and I learned that I, too, had Ramsay Hunt.

Ramsay Hunt syndrome is caused by the varicella-zoster virus, which causes chicken pox and shingles. It can cause facial paralysis, dizziness and hearing loss. I soon learned that hearing loss is one of the most common symptoms of Ramsay Hunt syndrome.

'I'm sorry, could you repeat that?'

How it happens: The herpes zoster virus can damage the cochlea, the part of the inner ear responsible for hearing. Facial paralysis is another common symptom of the syndrome. My palsy initially made it challenging to smile and close my left eye fully at night. It took weeks for those symptoms to ease, but my hearing loss stubbornly persisted.

For months, my hearing loss had made it challenging to hear people at gatherings and other loud environments. I would subtly step to a person’s left side to listen to them better with my right ear. Still, after several “I’m sorry, could you repeat that?” comments from me, I’d excuse myself to the bar area, embarrassed and frustrated by my hearing deficit. But I was still experiencing denial and believed my hearing would fully return.

However, after months of checking in almost weekly with my ENT, it became clear by late last year that the hearing in my left ear would never fully return. Though my hearing had improved since I had recovered from Ramsay Hunt, I still lost nearly 30 percent of my ability to hear at low and medium levels in my left ear, known as low-frequency hearing loss and mid-range hearing loss.

Hearing aid sharpened sense of sound

Mercifully, my health insurance paid 100 percent of the hearing aid cost from covered providers, so I braced for the reality of life with a hearing aid.

After testing different devices for a few weeks (the audiologist loaned them to me until I found one that was a great fit), I finally got my permanent hearing aid in December. It helps that I have thick, curly locks to cover the hearing aid, which is dark brown, the same hue as my hair.

The hearing aid sharpened sounds significantly. Certain words sounded clearer and more distinct instead of distant and muffled. It was the equivalent of raising the volume on the television set from a barely audible whisper to the average voice level. The sudden gain in hearing capacity also gave me headaches the first few days I wore it. I now had to readjust to listening better again.

But while certain sounds were crisper, I realized it was still challenging to understand and hear certain words at lower decibels or if there was too much background noise (like at a gym). But I have also started becoming more open and assertive about my hearing deficit. I now find myself saying, “I’m sorry, I’m hard of hearing in my left ear. Could you repeat what you said and raise your voice a little?”

Accepting the hearing loss

Although it was initially challenging to accept my hearing loss, I have learned to embrace my new situation and be more open about my experience. My audiologist warned that it might take a while to get used to the hearing aid. Once the headaches subsided, it became easier to live with my new reality. Because most hearing aids are programmed for high-frequency hearing loss, my audiologist programmed mine to my specific middle-range hearing deficit.

Since December when I began wearing my hearing aid every day, I’ve gotten used to my new routine. I charge the device overnight on my nightstand. Because it's not waterproof, I don’t wear it until after I shower and put my makeup on. I also love that my device pairs to an app, and I can adjust the volume discreetly, and I have pre-programmed custom settings for the gym, restaurants and watching television.

Hearing aids like mine have come a long way in recent years and can significantly improve the quality of life for others who are hard of hearing. But it's not just about the technology – it's also about changing attitudes toward hearing loss and breaking down the stigma surrounding it.

If you think you have hearing loss

If you think you or a loved on has hearing loss, get it checked out sooner rather than later, especially if your onset is sudden. To find a provider near you, search our consumer-reviewed directory.

^{Sources:
Ramsay Hunt syndrome, National Organization for Rare Disorders}