Dealing with setbacks

Sudden sensorineural hearing loss (SSHL)

Just over two years ago, on 2 Jan 2014, I woke up early ready to head to the pool for training. As I swung my legs off the side of the bed I noticed that my right ear felt blocked. Strange. It wasn’t totally deaf – but it felt a little like water had got inside. I tried to clear it with a few shakes and blowing my nose – the usual tricks you might try when your ears “pop” – and thought nothing of it. I headed to the pool and once I started to swim I stopped worrying about it.

I didn’t feel the best in the pool – but I told myself I was just tired. As I finished and got out of the pool I noticed that I was dizzy, the whole world had started to wobble. It was like a feeling of vertigo – when you are on top of something high and you look down and your head spins – or you drop off the top of a high point on a rollercoaster and lose your stomach.

I put my hand to my right ear and tapped the side of my head –no sound. The side of my face on the right, all around my ear, was numb. There was no sensation when I touched it – and no hearing. Not even a slightly muffled sound. I remember standing in the showers as everyone chatted after the swim and feeling as if I was having an out of body experience. I couldn’t make out who was saying what, or where noises were coming from. Luckily Mark was with me that morning, and it being 2 Jan I was not heading to work for once. The drive home was the weirdest sensation. It was lucky Mark was driving, I had no sense of speed or direction. I felt as if I was lagging slightly behind the world – like my reactions were really dulled – a spirit level taking ages to come back to the centre point each time I was tilted.

Needless to say I was straight in to see the GP when the local surgery opened the next day. I was told that I probably just had a blocked Eustachian tube, that it was quite normal, and that I should rest and take Sudafed to clear it. Hhhmmmm.  Google threw up a few other options for clearing this ear tube that I had never heard of – and I spent the next week or so trying them all. They mainly involved gargling/snorting strange liquids or steaming your head over a basin. Nothing worked. I was getting worried.

Scared to drive – I had to take a couple of days off work. More seriously I took a couple of days off training. I was struggling with normal tasks like walking in a straight line, carrying hot drinks and even lying down. If I shut my eyes I felt as if I had drunk a bottle of vodka (yes I can still remember those days!), the room spun fast, I felt nauseous and disorientated. Worse though as the days wore on I became aware of a growing buzzing noise in my right ear. At this stage I still fully believed that I just had a blocked ear – although looking back, the other symptoms should have alerted me to something more serious. The buzzing grew louder each day, but varied in intensity, pitch and tone. After a few days I noticed that there were intermittent clicks, high pitched whining, low white noise tones and some that sounded like someone singing. Not being used to these noises I regularly thought they were real noises and it wasn’t rare for me to spend time looking for the source – thinking there was a phone ringing or something boiling over in the kitchen. I still had a numb face and ear, and I began to think that there was really something not right. I went back to the GP and asked for a referral to an ENT specialist.

So just under three weeks after going deaf in my right ear I finally got in to see a specialist. I was on my own. I fully expected him to tell me that he could just put a syringe in there and get rid of the blockage. Within ten minutes of me walking into his office he broke the news. He tested the internal pressure on the ear and a few other things with some gadgets he had and concluded there was nothing physically wrong with the ear. Which apparently meant only one thing – the signal to the ear was not working. Coupled with the nerve damage symptoms of the numbness and it was a clear diagnosis. Sudden sensorineural hearing loss (SSHL) or sudden deafness. Permanent. I had not even imagined that as a possibility prior to the appointment. Deafness and tinnitus in one ear – for good. They were going to run some blood tests and a hearing test to confirm, but the Doctor was fairly sure and he turned out to be right. I was diagnosed as profoundly deaf in the right ear and referred to the ear clinic at the local hospital to get further advice.

I had never heard of SSHL before that day. It can occur at any age, but is apparently more common in people between 40-50 years old (although I am not that old yet!) and affects about 1 in 5,000 people a year. For the most part it attacks just one ear. As I left the hospital that day and drove to the gym to meet Mark I wondered how I was going to tell him that I was always going to be deaf in one ear. It was a huge shock to me. At that stage I was still struggling to adapt and finding the most basic things difficult. I couldn’t run on a treadmill and it was still dangerous to ride my bike. I couldn’t tell where my phone was when it rang. I found being in loud rooms very disconcerting and there was no way I could hold a conversation with someone standing on my right. When I got out of bed in the morning I still struggled to walk without bumping into things for at least ten mins. I couldn’t even make people at work cups of tea because I couldn’t deliver them without half of the tea being spilt. Most annoyingly of all, I couldn’t yet distinguish between real noises and the tinnitus noises in my deaf ear.

Despite all this I still thought it was just a minor setback. Having spent ten years in the Army – I have seen young people deal with far worse. In comparison to losing a leg – losing your hearing in just one ear is a fairly minor affliction. At this time I was just starting to get back into my triathlon training and was focussed on going to Ironman Texas in May and trying to qualify for the age group race in Kona. I decided to challenge my body as soon as possible in order to speed up the adaptation if possible. Scary as it was – I was already driving and soon got back on my bike and out on the roads. This was pretty dangerous at first as it was almost like learning to ride a bike again – I couldn’t even look over my shoulder without losing my balance. Worryingly too it was difficult to tell where cars were coming from – and I often mistook noise for oncoming traffic when in fact it was behind me. In the narrow, twisty Yorkshire lanes this resulted in a few close calls – but I learnt quickly to ride even more defensively than I had before. Riding with other people was embarrassing for a while – I found myself not wanting to admit to being slightly deaf, but having to somehow explain the total loss of bike skills.

Running required all my attention at first and the treadmill was the safest place to start. I found it difficult not to get nauseous to begin with – but after a couple of weeks I started to feel more confident.  The body truly is an incredible thing – and once my brain realised that the signal from my right ear was “broken” it seemed to start to switch off the scrambled messages. After a few months I was starting to find things a bit easier. I still struggled not to fall over if I got out of bed at night – and the running was still a challenge – but I could carry tea at least (so important!). I was also learning that my good ear was now incredibly sensitive to loud noises, and that being in restaurants and bars was virtually impossible. Two ears gives you the ability to distinguish background noise from the noises you are trying to listen to – like someone talking to you. When you lose one ear – all noises in busy places blend into one. I found I became confused and introverted in loud places – frustrated that I couldn’t hold a conversation.

Now – just over 2 years on – and I am fully adapted. My bike skills are about 90% as good as they used to be, I can run (most of the time) without hitting things and I don’t often feel drunk for no reason. There are things I have had to learn to live with, things that will never change. The tinnitus, buzzing and ticking in my ear has never gone and never will. But my brain has learnt to switch off to that and I barely notice it if I don’t think about it. I have learnt where to position myself in meetings and social events so that I can at least hear most of what is being said, and I have learnt that telling people is far easier than trying to cover it up.  I probably won’t ever enjoy busy restaurants and bars again, and if I lose my phone there is no point in ringing it to try and locate it. But the way I see it – these are such minor things and if that is the worst of it then I really have nothing to complain about.

There was one thing that did really bother me though. Music – or lack of it. Unfortunately most music is designed to be heard by people with two working ears.  You don’t really notice it when you have both ears – but try wearing just one in-ear earphone and see what happens. Firstly the noise becomes very “two-dimensional” – it has no depth to it. Secondly you actually miss out on some of the beats and the riffs. To give effects like fading in and out – music will come and go from left to right for example. With just one headphone you just end up wondering what the hell is wrong with the track. It was hugely annoying. But I am using past tense. This did really bother me – until I discovered bone conduction headphones – Aftershokz. For reasons that are a bit of a mystery to me – the way these headphones work has allowed me once again to hear music as it is meant to be heard – in surround sound. It is not perfect – but it is not far off. The day I put those headphones on and tried them was an emotional one. It was so incredible I nearly fell off my chair. As they are also Bluetooth enabled and can be connected to your phone and used as a handsfree kit I am now also able to have conversations with friends and family where I can almost hear them normally. The advantage with the out of ear conduction is that I also don’t lose use of my good ear – and retain balance and proprioception when I am using them. Miraculous really –and akin to having a hearing aide. Of course they were not designed for this purpose – it is simply a happy coincidence – and I would recommend them to everyone to try. Imagine being able to run with music and still hear cars! What a great invention. Sometimes, I love technology!

Life deals you setbacks along the way – it’s how you deal with them that matters.