How I learned to live with tinnitus

It was shortly before my 28th birthday, and the feeling of the drops in my left ear was oddly enjoyable. I listened to the sound of the wax dissolving and crackling, and then felt the warmth of the liquid as it made its way out of my newly clean ear. Why not clean the right one out, too? I tilted my head and put the drops in, and then came a rush as if my ear canal had collapsed: it sounded like I was under water.

I scrambled for tissue paper and dabbed at my ear, and leaned over the sink in the bathroom I shared with my housemate to allow the drops to fall out. And then it was done. My hearing returned to normal, but along with it, I noticed a ringing. What an idiot, I thought.

How to describe the sound? At its best, it sounds like air passing through a tiny hole; at its worst it is like a boiler humming in my head. Initially, I thought the sound would subside after a few hours or days, but it didn’t. It was unmistakeably there in every moment of my waking life – a light but constant ringing. Surely it wasn’t the drops; how could they possibly have caused this? So, then, had it been there before the ear drops? The sound was so subtle after all, and living in London it’s sometimes hard to work out what silence is, so it’s possible I had just never noticed it. Cue late-night panic-googling of tinnitus.

I was quick to get an appointment to see the doctor. Unlike some, it seems, I go to the doctor at the first chance. I’m one of those people who can lie awake at night thinking about what could come next – questioning exactly what nothingness is. For example, imagine knowing it was going to happen? You see it on TV sometimes, when an old person in a hospital bed looks at their partner and kids and says: “It’s time.” Terrifying, quite frankly. So, I go to the doctor whenever I need to, in an attempt to put off the inevitable for as long as possible.

I turned up at the doctor’s the next day. She was a pleasant student doctor, and I told myself this meant that she was far more likely to check thoroughly. I was filled with confidence.

She led me to a room like every other beige NHS room in the country, and asked me some questions. I’d brought the box and booklet from my eardrops with me, and I handed them to her. She looked at me earnestly, and smiled as if to say: “I fully understand your paranoia and don’t wish to belittle it, but what on earth are you talking about?” Ear drops, she told me, were very unlikely to have caused my tinnitus – it must just be a coincidence.

She looked in my ears with the otoscope and told me my ears were perfectly healthy. She even called in the senior doctor. “Yes,” he said, “two of the healthiest ears I’ve seen. Perhaps it’s hay fever?”

They told me to try a nasal spray, and I went away and bought it and it made no difference whatsoever. I used it for a month, and then read that it is not recommended to use nasal sprays for more than three weeks because they can cause, among other things, tinnitus.

By this point, tinnitus – defined in the Merriam-Webster dictionary as “a sensation of noise (such as a ringing or roaring) that is typically caused by a bodily condition and usually is of the subjective form which can only be heard by the one affected” – had become the overriding problem in my life. It was affecting my work, my sleep... it even affected my conversations. I remember being at my girlfriend’s flat one evening, sitting on the sofa, and as she was speaking, I realised I hadn’t listened to a word she’d said: I couldn’t concentrate over the ringing. I was so fixated on it that it had become like trying to talk to someone in a loud pub.

It was at this point that it occurred to me that this could be for ever. I am fairly healthy, I exercise, I’ve never smoked, and I drink only once or so a week. If I’m lucky, I have another 60 years left. Sixty years of listening to this ringing. It was enough to make me cry in the darkest moments – usually lying in bed at night, eyes wide open.

Convinced it was my sinuses, I began to breathe in the steam from boiling water under a towel in the mornings, at lunch and in the evenings. I did head massages and put hot towels over my face and eyes. Nothing did very much to alleviate the ringing, but it did help me relax, and it gave me a sense of doing something.

Back to the doctor, this time another GP. She looked in my ears. “Yes, very healthy ears,” she said.

“Could it be my sinuses?” I said to her.

“Not sure, but I’ll send you to an ENT doctor – you’ll receive a letter in the post.”

“When?” I said.

“I have no idea, but no time soon.”

Tinnitus is one of the most common chronic conditions in the world. Around 15 per cent of people have it in some form, and one in eight will have it permanently. For some people it is debilitating, making it impossible to live a normal life. Earlier this year, Kirsty Gallacher, a TV presenter, stepped down from her role at GB News because of the severity of her tinnitus. For others, such as myself, it is milder, and there is no hearing impairment at all.

My own tinnitus is always there. It gets worse sometimes, such as when I’m ill, or tired, or stressed. I would come away from an argument with my partner, for example, only to realise the ringing had become something like a microphone passing too close to a speaker. But overall, it is light; sometimes I don’t even notice it’s there. Between March and July, it’s at its worst as I deal with hay fever. Those are months, I have decided, that I have to just get through as best I can. Then, in the so-called bleak midwinter, I am more at peace.

I waited six anxious months for the ENT letter. When it came, it told me I would receive a phone call at some point. When they phoned me, I would have to state a pair of curious codewords: “pasta parsley”. But they didn’t ring for a few weeks anyway, and when they did, nobody asked me for a password. Fortunately, I would be going to the ENT the following Tuesday. It was all going to be over, a specialist at last. I had at one point considered forking out the £500 for an initial appointment at a private practice, but had decided to hold out for the NHS.

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I arrived for the appointment ready for the good news: finally we’d identify what was causing my tinnitus, and therefore put an end to this most horrible chapter. I sat down on the chair; there were some big machines in there, and I thought they looked promising. The doctor took out a small otoscope and looked in my ears.

“Two of the healthiest ears I’ve seen,” he said. “Thanks,” I said.

“Can you describe the sound?”

“It’s like those fox-scarers that make the really high-pitched noise. And it’s kind of in the middle of my head; I used to think it was more in the right than the left, but really it’s just in the middle, and it’s constant. It’s always there.”

“Well,” he said, “unfortunately we don’t know what causes tinnitus, and there’s not much we can do about it other than offering coping techniques.”

“That’s it? Are you not going to look at my sinuses?”

“I thought it was a problem with your ears?”

“Well, yes, but I read that your sinuses can cause tinnitus and a private clinic said they would do a nasal endoscopy.”

“We can do that if you want.”

“Why not?”

He took out the hook-shaped camera, lathered it up with lubricant, stuck it up my right nostril and twirled it around ever so slowly. My eyes watered. Then he took it out and put it up the other nostril.

“So?” I said.

“Very healthy.”

I started to feel as though I was in a Kafka story; I was going around in circles. I had an issue that no one could see or hear. I was shouting into the wind: “Please believe me, please help me.” It’s so very lonely when no one really understands what you are going through. The ENT doctor referred me again, this time for a hearing test.

“But my hearing’s fine,” I said.

“Just in case,” he said.

“When’s that going to be?”

“I can’t say; probably no time soon.”

I left the office three minutes after I’d gone in. Well, I thought, at the very least I can say it’s not my sinuses, and at the very least it doesn’t seem to be all that serious.

There was nothing else to do but move on. I did the hearing test, and my hearing was excellent. It was time to stop looking externally and start looking internally. I began to exercise more. I saw an osteopath, who told me it could be my spine where it met my skull after years of bad posture. I also did jaw exercises, because I read it could also be the joint in my jaw (TMJ), and it was true I’d started clenching my teeth in my sleep during the worst days of the lockdowns.

I notice it is worse when I’m at my parents’. They recently retired to Suffolk; I’m originally from Kingston and we lived near a motorway, and I was used to the roar. Then in London, I got used to the general anonymous bumble. But in the countryside, the silence made me all too aware of the ringing, and I would stay awake listening to it. The idea of spending the rest of my life listening to this noise came back to my thoughts.

It was the “just try to ignore it” advice I received from some that annoyed me the most. How about I buy a flute and follow you around all day playing the same note? You should try to ignore that. I started to feel like I’d made the whole thing up. Maybe I had. After all, I had no idea what other people heard. Maybe what I heard was what everyone heard. Did I know what silence was?

Then, at the pub one day, I sat next to a friend who I’ve known for six years or so. I watched him click his neck like I’d learnt to do via YouTube videos. He’d always done it as long as I’d known him, but I’d never paid much attention. Beer in hand, I asked him why. He said that since a car accident a few years ago, he got headaches and needed to click his neck. He said he had tender pain up the back of his head and in his temples. These symptoms weren’t unknown to me: I’d had them occasionally, too. I ventured the question: “Do you have tinnitus as well?” “Yes,” he replied. I have no shame admitting that I laughed out loud with joy – someone else! It was a kind of validation and recognition; an end to loneliness.

“It never goes away,” he said, “but sometimes it’s easier than other times, and those are the best. You get used to it.”

From that point on, I stopped trying to figure out what the cause was. Maybe something to do with my neck combined with clenching my jaw. But that didn’t really matter. I’d ruled out all physiological problems – at least as far as a tumour – and as far as I could see, it wasn’t affecting me too much. This was about a year into it, and sometimes now I can go whole days or weeks without even noticing the ringing – although it is definitely always there; I just have to actively listen for it.

In the end, surprise surprise, the ENT doctor was right: nobody knows what causes it for sure – although loud noises are heavily linked to many cases – and there is no cure. People have reported experiencing it as far back as 1600BC, and more than 200 conditions are associated with developing it.

According to Dr Eldre Beukes, a tinnitus expert from Anglia Ruskin University, it’s also not fully understood. No one even knows for sure how the sound is produced. Cognitive behavioural therapy (CBT) is sometimes offered in an effort to help sufferers to manage it, and the British Tinnitus Association also suggests helpful ways to learn to cope with the condition. But ultimately that’s all it is: coping. There might be some connection with sleep, and Elon Musk seems to think his future Neuralink brain implant will be able to cure it within five years – but for now, there’s nothing.

It was time for me to move on and learn to live with it. What that looks like for me is that any time I notice it’s louder, I simply acknowledge it and move on. I refuse to fixate on it. When it is particularly loud, I will put my headphones in and listen to music. “Just ignore it”, I guess.

This is easier said than done, but, for me, fixating on it and obsessing about it is worse than the actual sound – it was this that made me anxious, it was this that kept me up at night. Some days I pine for true silence, and I do fear that one day it will get worse, but learning to cope with it, as well as meeting others with the condition, can be healing.