Sudden Hearing Loss: Carly's Story
Did you know that you can suddenly lose your hearing, without any warning? On 29th August 2016, this is what happened to me, and this is how my hearing loss story began.
How I lost my hearing
I was 34 at the time and working as an Early Years teacher in Madrid, Spain. It was a teacher-training day, and I was sitting in a school auditorium, listening to a speaker giving a presentation.
As I lifted my head from my notetaking, suddenly, I was overcome by a loud screeching sound that filled my head with pressure. The sound grew quieter into a dull ringing, but the pressure continued, and I was soon feeling lightheaded and disoriented.
I turned to talk to my colleague who was sitting to the left of me. I could see she was talking; her mouth was moving, and she was looking at me and was gesturing. But I couldn’t understand anything she was saying.
This is how I lost the hearing in my left ear. I wasn’t unwell, and I didn’t have a known virus. The world to the left of me just fell suddenly into silence.
Failing to see the emergency in sudden hearing loss
At the time, I didn’t see the emergency in the situation. I thought I would feel better in the morning after a good night’s sleep, putting the spinning, ringing in my ears, and difficulty hearing, down to stress and tiredness.
The next few days, the spinning continued, and I was struggling to hear children in my classroom. Everyday noises sounded harsh and painful, and my ear was ringing continuously.
It was over a week later when I finally went to see my doctor. She looked in my ears and said that everything looked normal, but maybe there was some inflammation. She wrote me a prescription for some Ibuprofen and some nasal spray and told me to come back in a week if my hearing didn’t improve.
My symptoms continued, and a week later I returned to my doctor’s consultation room. From a physical examination of my ear, she couldn’t identify a problem, so she referred me to an Ears, Nose and Throat (ENT) specialist.
Diagnosis and treatment of sudden hearing loss
19 days after the day in the auditorium, I consulted with an ENT specialist. They asked me a few questions, and I carried out my first hearing test. The test results showed what I suspected—I couldn’t hear anything out of my left ear.
The specialist had a serious look on her face. She told me to take the test results and go immediately to the A&E department of the local hospital.
At the hospital, the ENT specialist listened to my story, looked inside my ears, and studied my hearing test results. She gave me my diagnosis—Sudden Sensorineural Hearing Loss (SSNHL). I also had accompanying tinnitus and vertigo.
I spent a week in the hospital and received treatments of antibiotics, antiviral medication, and corticosteroids—both intravenous and injected directly into the ear. Blood tests were taken, and later an MRI ruled out a serious underlying cause of my hearing loss.
At the end of the week, I left the hospital with a tapering dose of steroids to continue treatment at home.
After finishing the treatment and having no recovery of hearing, the doctors told me there wasn’t anything else they could do and that it was unlikely I would regain any hearing. I was also left with ever-present tinnitus and balance issue.
- My Hearing Loss Story blog
I was struggling to deal with the emotional impact of losing my hearing so suddenly. I wasn’t prepared for this. I didn’t have a practical understanding of how to live with single-sided deafness, and I was experiencing feelings of isolation.
I started writing a personal blog, My Hearing Loss Story, to share my experience of living with hearing loss and to work through my emotions. Through my blog’s contact page, I started to receive emails from others going through similar experiences. People wanted to talk and share their stories. I realised my story wasn’t unique.
- Online support group
I began to realise how much value there was in communicating with others living similar experiences—through sharing our stories we were learning from each other and no longer alone in the experience
In November 2019, I created the My Hearing Loss Story Facebook support group. This is a group where people can share their hearing loss stories, ask questions, and offer each other support.
Lack of awareness
I now know that a sudden loss of hearing is a medical emergency. It is important to seek medical attention as soon as possible. Treatment within 24-48 hours of onset is thought to be most effective and acting quickly is crucial.
I didn’t know this at the time. I didn’t know there was such a thing as SSNHL until it happened to me. I had put my work before my health and received treatment too late to have a good chance of regaining any hearing.
Unfortunately, many people who contacted me through my blog had also been misdiagnosed or were simply not given the opportunity to see a specialist as soon as possible.
In connecting with others and listening to so many similar stories of SSNHL, I started to realise that there was still relatively little known about it, which makes it difficult to know where to find information and support.
Although there are various articles online, I couldn’t find anything which encompassed the whole SSNHL experience, all in one place. There was a real need for a resource where people could access reliable information and support in dealing with SSNHL and related conditions such as tinnitus, vertigo and associated emotional effects of losing hearing so suddenly. So, I decided to make one myself.
Founding the Sudden Hearing Loss Support website
Through crowdfunding, I was able to get the project off the ground by financing the initial start-up and running costs of the website.
In creating the website, I sought support from hearing loss and tinnitus organisations and charities, audiologists, and hearing aid manufacturers and providers.
On April 19th, 2021, I launched the Sudden Hearing Loss Support website—the first website dedicated to providing information and support to people affected by sudden hearing loss. There are two main aims of the website:
- Enable access to reliable information and support for people who have been affected by SSNHL loss and associated issues such as tinnitus and vertigo.
- Raise awareness of SSNHL as a condition; that it should be considered a medical emergency, and to urge people to seek medical attention immediately, should they notice any change in their hearing.
I hope this resource will be a reliable source of information and support, and that it will prompt people affected to seek immediate medical attention, helping them to have the best chance of recovering their hearing.