Sudden Sensorineural Hearing Loss (SSHL) aka Sudden Deafness

The story of Annabel

In March 2013, I went completely deaf in my right ear. I was laying on my bed and suddenly, it felt like someone had just pulled all the noise and feeling out of my right ear in one swift moment. I panicked for a few moments, and then figured it was probably just allergies or something similar so I decided to watch it and go on with life.

Today, almost three years later, I am still almost completely deaf on one side. And we’re still not exactly sure why.

Shortly after I lost my hearing, I visited my first of many ear doctors and learned that bedside manner is incredibly important. I was told right off the bat that I may have a brain tumor and had to have an MRI; I was tested for various infections and given steroids and antivirals. The steroids made my face swell and my skin break out, the antivirals gave me a rash on my hands. But nothing helped my hearing. I was next put on a neurotonin that made my hair fall out in chunks. I was scared to wash my hair because of how fast I was losing it. And through all of this, I was visiting the medical center on an almost weekly basis, getting hearing tests done and trying to figure out what had happened to me.

I was diagnosed with Sudden Sensorineural Hearing Loss (SSHL), also known as sudden deafness. By definition, SSHL is an unexplained rapid loss of hearing. As in no one has any idea why this happened to me or the small number of other people it affects on a yearly basis — and only 10% of that number are able to pinpoint why it happened to them.

I’ve tried pretty much every form of medication and natural remedies, have visited both an acupuncturist and a medicinal doctor, and have done a lot of praying. The problem is that because of the damage, I’m unable to discern most consonants, so a traditional hearing aid isn’t really even an option. From what I’ve seen with available surgery, I’m not ready to commit. And as some of the sound has gradually come back, I’m learning how to live with it.

Most people who know me probably don’t even know this happened. I always try to play it off lightly when I meet new people (“Just in case you talk to me and it seems like I’m ignoring you, I’m not! I’m just deaf!”). But on Rare Disease Day, I want to take the opportunity to urge ANYONE who suffers from hearing loss, especially sudden hearing loss, to get it checked out immediately. Don’t wait until the next day — visit a doctor IMMEDIATELY. Your chance of recovery is much greater if you treat the problem right away.

You never realize how blessed you are to wake up and hear out of both ears until you suddenly can’t hear out of one, or both, of them anymore. So please, I implore you, if you happen to be one of the few people this affects — or if you hear that someone you know is experiencing it — go get it checked out immediately.