Here, Carly Sygrove kindly shares her experience of sudden hearing loss and the resulting tinnitus. Sudden hearing loss is a serious condition but it's often not clear where to turn for help.
Carly has recently founded the Sudden Hearing Loss Support website and gives us an insight into more of her journey.
The Beginning of My Story
On 29th August 2016, I was working as an Early Years teacher in Spain. It was the start of the new school year, and I was sitting in a school auditorium, listening to a speaker giving a presentation.
As I lifted my head from my note taking, out of nowhere came 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 disorientated.
I turned to talk to my colleague sat 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 and simultaneously gained the intrusive sounds of tinnitus.
I wasn’t unwell, and I didn’t have a known virus.
At the time, I didn’t see the emergency in the situation. I thought that I would feel better the next morning after a good night’s sleep, putting the spinning, ringing in my ears, and difficulty hearing down to stress and tiredness.
Seeking Medical Attention
It wasn’t until day 9, following the day in the auditorium, when I finally went to see my GP.
She looked in my ear, said that it looked normal and that perhaps there was some inflammation. She gave me a prescription for some Ibuprofen tablets and nasal sprays. A week later, after no improvement, I was referred to a specialist.
I began day 19 by going to see an ENT specialist. I was hoping that this would be the end of my hearing loss journey and that someone would find the problem, give me some medicine, and I would be better.
I was asked to carry out a hearing test—this was to be the first of many. After the test, the audiologist took me by my arm and told me to go to the A&E department of a nearby hospital immediately.
Testing and Treatment
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 spent a week in the hospital and received treatment of antibiotics, antiviral medication, and intravenous corticosteroids.
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, I was told that there wasn’t anything else that could be done and that it was very unlikely I would regain any hearing.
Living with Single-Sided Deafness
The loss was profound, I had no functional hearing in my left ear, and I was now living with single-sided deafness.
I was fitted with a CROS hearing aid, which is a special type of aid for people with single-sided deafness. I trialled it for three months but unfortunately, it didn’t provide the support I’d hoped for. I returned the device and was told that I was out of treatment options.
With only one hearing ear, I couldn’t identify where sound was coming from. I might hear some music or a noise, but I didn’t know which way to look to see what had produced the sound.
When I was on my own in everyday situations, I often felt vulnerable. I worried about crossing the road, and not hearing traffic approaching on my deaf side. I worried about strangers talking to me, and not being able to hear them, or even worse failing to acknowledge them.
In noisy environments, it was difficult to focus on a single person’s voice. Socialising was demanding amongst background noise. In restaurants and bars, I learnt to sit in a corner, or with my deaf ear against a wall and my hearing ear facing the person I was speaking to, to have some chance at hearing them in conversation.
Living with Tinnitus
With tinnitus, my life became noisier.
The foundation layer of my tinnitus was always the sound of water whooshing past my ears. With more focus, I’d hear other sounds including the sound of a kettle, boiling with a shrill continuous whistle, and bursts of crackling radio static.
In the beginning, learning to live with these unwanted sounds was extremely difficult.
I spoke to an ENT specialist and asked for help with managing my tinnitus. They told me I had to learn to live with it, and suggested I try taking a Ginkgo Biloba supplement.
It was difficult to accept a condition for which there was no cure.
Sometimes my tinnitus was so loud that it was difficult to hear or concentrate on ‘real’ sounds. It would steal my attention from conversations, and I struggled to sleep because at night there was no ambient noise to mask it.
With time, I learned to live with my tinnitus.
It gradually faded into the background of my days and everyday noises would usually mask it. I stayed busy. I took my mind off it. I surrounded myself with everyday sounds. Yet, I still missed silence.
Not only was I struggling to deal with the practical challenges of living with a reduced sense of hearing and tinnitus, but I was also overwhelmed by the emotional aspects of hearing loss, such as feelings of isolation and the need to grieve the sound I had lost.
In December 2016, I started my blog, My Hearing Loss Story, as a way of dealing with my emotions and sharing my story with others.
Emails began landing in my inbox, from people all over the world who wanted to talk about their experiences of sudden hearing loss. They were looking for support and advice about living with hearing loss and dealing with the emotional impact of losing their hearing so suddenly.
Many people reached out for help with coping with their associated tinnitus, a condition which those affected often found harder to manage than the hearing loss itself.
I took comfort in being able to help people through their difficulties. I listened to every story with sympathy and offered personal advice and as much support as I knew how to.
Online Support Group
Reading so many similar stories of sudden hearing loss, and struggles with tinnitus, grief, anxiety, and isolation, I decided to provide a space where people with similar experiences could connect.
In November 2019, I created the My Hearing Loss Story group on Facebook, a support group where people with hearing loss can share their stories, ask questions, and offer each other support.
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
Lack of Awareness
I had put my work before my health. I should have seen a doctor sooner. It’s crazy because if I suddenly lost sight in one eye, I would immediately go to the hospital, but somehow, I didn’t place the same value on my hearing.
And yet, my story wasn’t unique.
In speaking to people through my blog and support group, I began to realise that there is a general lack of awareness of sudden hearing loss amongst the public.
Unfortunately, many people seek medical attention too late, are misdiagnosed, or simply aren't given the opportunity to see a specialist as soon as possible, which is critical to having a chance of recovery.
Launching My New Website!
It can be difficult to know where to find information and support for SSNHL.
Although various articles can be found online, I couldn’t find anything which encompassed the whole sudden hearing loss experience, all in one place.
So, I decided to make it myself.
Through crowdfunding, I was able to get the project off the ground by financing the initial start-up and running costs of the website.
On April 19th, 2021, after learning how to make a website (not as easy as I thought!), I launched Sudden Hearing Loss Support—the first website dedicated to providing information and support to people affected by sudden hearing loss.
In the creation of this website, I was supported by hearing loss and tinnitus organisations and charities, audiologists, and hearing aid manufacturers and providers.
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.
To read Carly’s blog, click here.
To visit the Sudden Hearing Loss Support website, click here.
To join the online hearing loss support group, click here.
Sudden Sensorineural Hearing Loss (SSNHL) is a serious medical condition that requires prompt medical attention. Delaying SSNHL diagnosis and treatment may decrease the effectiveness of treatment.