“My life changed overnight”: Dealing with sudden hearing loss and tinnitus

today05/02/2024 5

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Sudden sensorineural hearing loss happens to 1in 5000 people a year and usually to those in middle age. There’s very little online about it, apart from standard medical definitions and bleak Reddit threads. It happens seemingly at random and only 10 per cent of cases have an identifiable cause, such as a viral infection, an autoimmune disease or blood circulation problems. It can also be mistaken for Labrynthitis, Ménière’s disease or a regular ear infection, meaning that crucial steroid treatment can be delayed or not recommended at all. Dealing with SSHL is a lonely and confusing experience and I’ve still never met anyone else who has suffered from it apart from fellow music journalist Nick Coleman, who wrote The Train In The Night, which is maybe the only non-medical book about it.

It hit me like a ton of bricks. I was bedridden with vertigo for a week, unable to do much but eat bowls of cereal, vomit and sleep. I managed to drag myself to a GP who put the symptoms down to Labrynthitis and gave me a load of pills to ease the dizziness and sickness. I was signed off work for a few weeks and spent most of the summer on the sofa watching The Wire. I could walk but it took months to feel steady on my feet and I was constantly wondering about the ringing noise in my ear and whether my hearing would return. It was a very grey time, a fever dream in which my life had stopped but the world of my friends, colleagues and peers kept turning. At some point I realised that it was probably more serious than a standard ear infection.

I saw a specialist who conducted Rinne’s and Weber’s tests on me using a tuning fork. It’s an old-school process that can tell whether a patient has suffered conductive (a blockage of the ear, for example) or sensorineural hearing loss. The doctor called it immediately: I’d lost the hearing in my right ear and was unlikely to regain it. The news was difficult to take. I remember my world wobbling at the edges, threatening to collapse. Was that it? Are you… sure?! What about work, music, my social life? What about the constant threat of tinnitus? What if something happens to my other ear?

I lived in denial for the rest of 2016 and into 2017 as I did a seemingly endless series of hearing tests and clung on to the false hope offered by different ENT doctors who all gave me different verdicts (It’s just a nasal blockage! Being around loud music is fine!). In a particularly desperate bout of optimism I tried homeopathic medicine, which is definitely one of the more futile things you can do to treat irreparable damage to the inner ear. After 12 months gathering results and opinions I went to see another specialist, this time on Harley Street in Central London, who confirmed the worst: I’ve experienced a ‘stroke of the ear’, where blood supply in the ear is disrupted and causes damage to auditory nerves. It’s the most coherent diagnosis yet and, finally, a solid explanation. Some closure. The penny drops and I accept defeat; there’s no bringing it back.

In those first 12 months I’d only spoken to one person, the specialist on Harley Street, who understood what exactly had happened to me. After that I was on my own again, incredibly nervous about protecting my ears, scared about losing my mind to tinnitus and wondering whether I still had a career in music. I’d put many parts of my life on pause but now I had to create a new kind of normal for myself. I wasn’t out at clubs and venues all weekend so I used the spare time to get into fitness, learn a new language, do some travelling, rediscover surfing and spend more quality time with friends, who all commended me on my resilience and how well I’d adapted. I slowly gained the confidence to ask people to sit or stand on my ‘good side’, made bashful apologies to people who spoke into my bad ear and found themselves ignored, and spoke openly about my hearing loss to anyone who would, ahem, listen.

On the surface I was doing well. I’d suffered a rare condition but bounced back quickly and was exploring other aspects of life and genuinely counting my blessings (an early coping mechanism was to tell myself ‘at least you’re still alive’ whenever my tinnitus came into focus). In the effort to be brave and move on, I missed the signs of a deeper anxiety and unhappiness. I’d feel dissociation during lively social events when it was difficult to hear; I became listless at work; I lost contact with a bunch of friends because I wasn’t out all the time and I started losing sense of myself and who I actually was as a person. I’d daydream about how happy I’d be when it was all over, when I’d be cured. Every so often worryingly dark thoughts would enter my head after I put the light out to go to sleep. The effects of trauma were catching up on me and I felt lost.

Written by: Tim Hopkins

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