Recently, I went with a date to a film he had been wanting to see for ages.
It was our third date and I was excited at the chance for a night out but, in the back of my mind, I couldn’t help but worry. And sure enough, 15 minutes into the film, the inevitable happened.
The film — Steve Jobs — was to me painfully loud. It wasn’t just a bit uncomfortable, it actually felt as if the words and music were piercing my head.
I had to hurry to the quiet of the ladies’ where I burst into tears. I spent the next hour in there recovering.
When the film finally ended, I found my date, Michael in the foyer. I was still shaking and gripping my head. ‘It’s the pain,’ I explained.
He took one look at me and took me to the nearest hospital. After an hour in AE I was discharged with a bag of powerful painkillers.
‘People with hyperacusis experience uncomfortable, and sometimes painful, responses to common noises that under normal circumstances do not bother the rest of the population,’ says ear surgeon John Phillips
It was not the first time that I have found myself so severely affected by noise and, I am afraid, it won’t be the last.
I suffer from hyperacusis, a severe sensitivity to sound. Since I developed the condition four years ago, such incidents as that at the cinema have become commonplace.
Everyday sounds — running water, people tapping on a computer keyboard, people chatting — can set off a range of symptoms from a sharp pain in my head to feelings of anxiety and tearfulness.
It has affected every part of my life. Just walking down a busy street is intolerable and most evenings I spend watching a DVD that I have to pause every so often because the sound gets too much.
Hyperacusis is a surprisingly common condition affecting around 6 million people (it is particularly common in children) although less than half of those will have it to the extent that I do.
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John Phillips, a consultant ear, nose and throat surgeon at the Norfolk and Norwich University Hospital, who has a special interest in the condition, explains: ‘Hyperacusis is an unusual intolerance to ordinary, everyday sounds.
‘People with hyperacusis experience uncomfortable, and sometimes painful, responses to common noises that under normal circumstances do not bother the rest of the population.
The current theory is that the hearing system becomes more sensitive to sound, but we don’t know why.
‘The symptoms can be triggered by a variety of noises and frequencies.’
Typically, hyperacusis is a response to noises in our everyday environment.
‘For some this may trigger pain — a headache — but it can also cause feelings of distress or tearfulness,’ says Mr Phillips.
‘For some, it can severely impact on their daily life to the extent that they avoid normal activities and withdraw into a silent world. For others it can be a mild affliction.’
‘For some, hyperacusis can severely impact on their daily life to the extent that they avoid normal activities and withdraw into a silent world,’ Mr Phillips says
We now know that hyperacusis is linked to a variety of medical conditions, including migraine and Lyme disease (a condition triggered by tick bites).
It can also affect those with tinnitus (permanent ringing or buzzing noises in their ear).
Such mental health disorders as depression, anxiety, or even stress can also trigger or exacerbate it says Mr Phillips.
I can pinpoint the beginnings of my hyperacusis to a lunch with friends four years ago. We were all laughing and talking loudly, when I started to feel slightly sick.
At first I thought I must have caught a virus.
There was a slight band of pain round my head and I felt confused and distressed. I put it down to stress: I had just come out of a toxic six-year relationship and was looking after my mother who has severe dementia.
At that point the pain was not excruciating and seemed to come on whenever I was tired or stressed. Yet within a year, I would end up in pain throughout the day.
I was tired and would regularly have to rest for at least four hours a day.
I couldn’t go to supermarkets because the general level of noise felt distressing.
Hyperacusis is linked to a variety of medical conditions, including migraine and Lyme disease (a condition triggered by tick bites), and it can also affect those with tinnitus
Walking down a busy street or even just chatting with friends became intolerable because their voices sent waves of pain through my head.
I could not block out the background buzz of city life, traffic, children playing outside my flat, but I tried to ‘de-noise’ my house — putting such techno devices as my mobile phone on silent, as the ringing or even a ping heralding a new message will trigger sharp pain in my head.
Even days out to the countryside were beyond me. About a year ago, a friend kindly offered to take me to his cottage for the weekend but the traffic noise on the motorway was so bad, I was soon screaming with my head in my hands.
We had to turn back home and I went to bed with an ice pack on my head.
When I last went to the hairdresser a month ago, the sound of the hairdryer felt like I was being pelted with ball bearings.
My condition has had a disastrous impact on my romantic life. Imagine having a date who asks you to turn off the radio in the car, begs to be taken to a quiet, empty restaurant and has to be in bed by ten.
The hyperacusis is so taxing on the brain that it causes intense fatigue.
For those with hyperacusis, simple background noise can cause searing headaches and cause intense fatigue
I never saw Michael again, and I now realise that I am not interested in someone unless they have a bit of understanding, as hard as it would be for them.
Despite the fact this condition has shut down my ability to lead a normal life, getting medical help has proved hard.
Three years ago the symptoms were becoming worse so I went to my doctor. At first my symptons were put down to overwork and I was told to rest.
I have also been diagnosed with a sinus headache and prescribed antibiotics, an ear infection, labyrinthitis and inflammation of the inner ear.
I also had blood tests but these came back normal and I was told nothing could be done. I started to think it was just my imagination.
According to Mr Phillips, my experience is quite typical as some doctors may not have even come across the term ‘hyperacusis’.
My turning point came a year ago when I saw a new GP who referred me to a neurologist. After listing my symptoms, I was diagnosed with migraine and severe hyperacusis. It was such a relief. I wasn’t mad after all.
There is no cure for hyperacusis. Most treatment begins in an ENT unit — being referred to a neurologist as I was is unusual, and was only because I had such bad headaches.
Mr Phillips says using earplugs to block out the noise is unlikely to help, and may make the noise much worse
Treatment options typically include sound therapy which involves using sound generators played at night before you sleep which are meant to gradually reduce sensitivity to noise. The most commonly used sound is white noise, which sounds like a rushing or ‘shhhh’ noise.
Other treatments include cognitive behavioural therapy, which aims to alter the patient’s reaction to life events.
‘Where we identify that hyperacusis can have a psychological underpinning, psychological treatments can be quite effective in unpicking the patient’s stress responses to noise and talking through the underlying reasons for this,’ says Mr Phillips.
WHY ARE HIGH STREET SHOPS SO NOISY?
Earlier this month, bosses at MS announced they are listening to customers’ complaints and are scrapping piped music at more than 300 clothing and homeware branches after ten years.
But out in the High Street, the noise assault continues.
At the Kensington branch of fashion chain HM, the thumping rhythm can be heard from the street, at the surprising volume of 79.3 dB.
Outside the HM branch in Kensington, the thumping rhythm can be heard from the street, at the surprising volume of 79.3 dB
It was even louder in Topshop’s flagship store at Oxford Circus – 83.8 dB during one track, which is only two points off the level at which you are advised to protect your ears to avoid permanent hearing damage.
Another one of the loudest places we visited was the Apple Store on Regent Street, where the ‘Muzak’ combined with the tech talk of hundreds of customers pushed the reading up to 81.9 dB.
My neurologist started me on amytriptyline, an antidepressant that increases the amount of the brain chemicals serotonin and noradrenaline that have a calming effect on the central nervous system.
This I was told, would help with both the hyperacusis and the migraines that can also be triggered by an inbalance of brain chemicals.
The pills have managed to dull the pain and I have been able to tolerate chatting to friends for an hour or so, but they have caused side-effects. I wake up groggy and I’ve started grinding my teeth at night and they have also caused constipation and dry mouth.
But at least I can walk down the street wearing ear plugs — whereas previously even this would have been beyond me. But Mr Phillips says the ear plugs are not a good idea. ‘It is one of the worst things you can do,’ he explains.
‘When you use something to shut out sound from the outside world, the brain reacts to this by increasing its sensitivity to be able to hear better.
‘This means that when you take the earplugs out, the noise level can be even louder, making the hyperacusis worse.’
And it’s true — I’ve found that when I take mine out it is like the world has been switched onto full volume.
Apart from having to wean myself off my ear plugs, I can now see a flicker of light at the end of my silent tunnel. My GP has referred me to an ear, nose and throat clinic, and to a CBT specialist.
I am also practising mindfulness, where I quiet down my brain and try to curb negative feelings around sound, and that seems to be helping, too.
I remain optimistic that some day soon I will emerge from my quiet life and resume all those things it is so easy to take for granted.