Sudden Sensorineural Hearing Loss (SSNHL) can happen overnight – as it did with me – or develop over a few hours or days. 70% of people with SSNHL also experience tinnitus, and 50% also get vertigo. I was ‘lucky’ enough to get both, and I still have them, although thankfully to a lesser degree than I did when my hearing disappeared.
My SSNHL happened in 2005. I started to feel dizzy and nauseous while at a neighbour’s house so took myself home and off to bed. The next morning the first thing I realised was that I couldn’t sit up, never mind get out of bed. Then it dawned on me that the hearing in my right ear had been replaced by tinging and squelching sounds.
That was the start of my hearing loss journey. And here’s what I wish I’d known in those first few months:
Sudden hearing loss is serious. Like me you might find yourself repeatedly sent away by your GP who is convinced that catarrh is causing your hearing loss. But patients with suspected sudden sensorineural hearing loss should be assessed by ENT (and treated) as soon as possible.
You’ve got to be proactive about getting the best care. After several months of being refused a referral to ENT by my GP I saw a consultant privately, who cheerfully told me my hearing couldn’t be restored and that nothing would help. Only when I really pushed him in desperation did he admit there was something that could help – the BAHA – and he referred me to the fab team at Manchester Royal Infirmary.
Losing your hearing suddenly in both ears is very rare. For the first few years after my SSNHL my first waking thought was “can I hear?” Because my SSNHL is idiopathic (ie has no clear cause) I was convinced I would wake up one morning and be completely deaf. And I only found out a couple of weeks ago how rare this is.
Worrying doesn’t help. It has taken me years to realise this (my Mum will tell you I was born a worrywart!). But it’s true. Spending time worrying about losing more hearing just uses up energy, interferes with your enjoyment of life, and gives you heartburn. All you can do it focus on what you can control.
The right support makes a big difference. With a life change this big you need someone to talk to about it. That could be family or friends, a counsellor or a hearing coach like me. There’s also some great support from other people who have experienced the same thing in Facebook groups like Single Sided Deafness Support. It’s worth remembering, though, to pay more attention to people who are choosing to be proactive about managing their experience rather than those who are all doom and gloom.
If you've experienced sudden hearing loss, what's your advice to others?