A World Turned Up

The below post details my experience of hyperacusis and the treatment I received to deal with it.  Please note however that I am not a medical professional; information given on this page is not medical advice; before acting on any of the information on this page you should discuss the matter with your GP or other qualified medical professional; and I can't take any responsibility for any problems you may experience as a result of acting on any information provided on this page.

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It was when going to the toilet became difficult that I knew I really had to do something about it. The sound of a flush was, for me, as loud as standing beside somebody drilling a hole in concrete, and extremely painful.

Other pain-inducing noises included showers, telephone ringtones, espresso machines, badly-oiled car brakes, the beeps before tube doors shut, and a certain friend of mine who has a rather high-pitched voice. These sounds might irritate most people; for me they hurt. This was my world turned up: for nearly two years, I heard everyday sounds at incredibly loud volumes. And, being a musician and songwriter, this nearly put an end to all hopes of career in music.

The problems all started when I started to feel a strange 'fullness' in my left ear. It felt a bit like when you get water in your ear in a swimming pool. At first I didn't think much of it, attributing to an infection, but then I started to notice that the fullness seemed to get worse every time I heard a 'loud' noise. In my case, the loud noise was usually the sound of my own voice, coming out of a pair of speakers in a studio. Most musicians love the sound of their own voices; mine was starting to cause me distress.

The first port of call was my local GP. He had a look at my left ear and said I had a small hole in my eardrum, and gave me some antibiotics to treat it. A couple of weeks later I returned, and apparently it had healed. But by now something else was happening: I was starting to find certain noises, particularly high-pitched ones, painful – and not just in my left ear; my right ear was behaving strangely too.

This started to have a subtle effect on my behaviour. When getting on a train, I would always look for the loudspeakers which announced the station names, and find a seat as far from them as possible; when going to a café I would distance myself from the coffee machines. Needless to say, social situations started to become really difficult. Bars and clubs became a no-go area without the aid of earplugs, and wearing them drew unwanted comments about foam fashion accessories. Gradually I became more and more dependent on earplugs, and wore them not only in bars and clubs, but in just about every situation.

And of all the noises that caused me difficulties, music was the worst. I was in the middle of recording "Twisted City" and was spending a lot of time in the studio, trying to mix it, a lot of the time in considerable pain. This problem was having a disastrous effect on the album. I would turn the volume down and try to mix at daftly low levels, or I would mix with foam earplugs in. Both approaches to mixing the album had predictable results: it sounded rotten. With repeated trips to my GP (each at 50 Euros – £40 – we don't have free GP visits in Ireland) came reassurances that nothing was wrong with my ears, and that my hearing was fine. Eventually, I was referred to a specialist – the first of several.

I walked out of the consultant's office 150 Euros worse off, and no wiser. The rather stern chap, who wore a dickie bow (this was the only redeeming feature of the appointment), gave me a hearing test and told me I was fine. He referred me to another clinic where I could get a more in-depth one 'just to put my mind at ease,' which I did. Another 60 Euros; no answers.

By now two things were happening: first, I was moving to London to pursue a rock career and a relationship – and second, my ear condition was getting worse. What had started out as weird was really starting to affect me; I became very depressed about how this allergy to sound was affecting my attempts to 'make it' as a musician.

It's hard enough plugging your musical wares around London without having the additional worry of your music causing you physical distress. I also became extremely irritable, and a complete nightmare to live with; my relationship with my girlfriend suffered considerably as a result of me being on constant edge around any everyday sound. It got so bad that she started worrying about sounds herself, and was reduced to tiptoeing around the house whenever I was around. It lead to a series of rows where both of us had to whisper at each other – shouting was entirely out of the question.

Hitherto the health profession hadn't explained what on earth was going on – so, reluctantly, I turned to the internet. I finally found a description of a condition which, based on the symptoms I had, seemed to be what I was suffering from: hyperacusis, "an increased sensitivity to the sounds that most people are able to tolerate".

The problem was that all these websites on which I'd found references to hyperacusis seemed to differ in their approach to what it was, how it was treated, and whether it was something permanent. It was time to reapproach the health professionals; this time I thought, with a diagnosis of sorts, maybe I can get some treatment. I went to an NHS doctor, who was helpful, and put me on a waiting list to see a consultant.

By this point, and faced with a reasonably long wait, I was really panicking, and I decided (against my pinko-liberal instincts) to see a private consultant.

£250 later I walked out of the consultant's room. He had spent five unfriendly minutes with me, told me I had got the diagnosis right, and had given me a prescription.

I was elated about the prospect of taking a pill to remove the pain, until I googled the name of the drug prescribed, Clonazepam. It was an anti-anxietal drug, with strong side effects, some of which apparently could actually cause hyperacusis. More googling led me to the Tinnitus and Hyperacusis Centre in London; I rang them up and they informed me that you couldn't cure hyperacusis with a tablet, and that in fact they had told that very consultant in a recent seminar that prescribing Clonazepam was a bad idea! The centre offered treatment by desensitisation (where hyperacusis sufferers are played white/pink noise at gradually increasing volumes to readjust their ears to everyday volumes), but it was very expensive and, not having health insurance (or even a job) at this point I couldn't really afford any more private treatment. I gradually got more and more stressed about it all, and the more I got stressed, the worse the hyperacusis got, and the more I wore my earplugs to block out the sounds around me. Which, unbeknownst to me, was part of the problem.

The last resort was the NHS appointment. I waited the four months before it came round, and to be honest I wasn't expecting much from it, as at this point nobody seemed to have been able to help. But I was surprised. Instead of giving me hearing tests, prescribing dodgy drugs, or charging me thousands of pounds to go through a desensitisation programme, they gave me "hearing therapy". I was skeptical at first, because I didn't equate an ear problem with a need for a hearing shrink. Fortunately though I wasn't subjected to hearing psychobabble, but practical and (no pun intended) sound advice.

First, I had to stop using earplugs in everyday scenarios. I was told that this is one of the worst things a hyperacusis sufferer can do, as when the earplugs are taken out, the brain perceives everyday noises as far louder than they actually are. It reinforces the hypersensitivity to sound.

Earplugs – but special, expensive ones (they cost about £170) – were still to be used in loud musical contexts where noise levels would damage anybody's hearing - but they were to be taken out at regular intervals.

Secondly, I was told I had to try my best to stop worrying about sound, and to stop being 'afraid' of it. The more I worried about sound, the more I had been focussing on it, and the more I tried to avoid it. A reassurance from the hearing therapist that I had not permanently damaged my ears really helped in this regard, as did some simple suggestions on how to relax. Eventually, I learnt to go out and about without earplugs, and experience noise the way everybody else did again. And thankfully I was able to remix "Twisted City" at a reasonable level.

By the time I felt my hearing was back to normal I had spent approximately £760, and seen three GPs, three consultants, three nurses, two trainee hearing therapists and a hearing therapist. The emotional cost had been huge too: I had nearly given up on my music and my girlfriend.

Eventually I got very good help from the medical profession, but if there was more knowledge within it about hyperacusis I am sure I could have recovered more quickly and avoided those whispered fights with my girlfriend. But ultimately I think the whole thing was good for me; I'm extremely careful these days when it comes to mixing music at high volumes – the cause of the problem, I'm sure – and I don't do things which are effectively bad for my ears (or fashionista reputation) like wear earplugs in restaurants.

For more information about hyperacusis and my experience of it, along with useful resources about the condition, please see the hyperacusis FAQs section on my website. I'd also suggest taking a look at Action On Hearing Loss's factsheet about hyperacusis.<