Karen Cook doesn’t just dislike loud noises, she finds they actually hurt – so much so that conversations with her two sons, aged 12 and eight, can only be conducted in a whisper, phone calls are impossible, and even the sound of a boiling kettle is too much.
Karen, 50, is so sensitive to everyday noises that going out is now too painful for her and she’s been housebound for two years.
‘On better days, I can whisper and shower,’ she says. ‘On my worst days, I can’t dress or leave my bedroom, even with ear plugs and ear defenders on all day, every day.’
Karen suffers from a little-known but surprisingly common condition called hyperacusis. Those affected find normal sounds so loud it causes them distress or even pain.
For some, loud noises such as fireworks may be intolerable, but for those who have it severely, such as Karen, even innocuous everyday sounds are unbearable.
Before this struck, Karen worked as cabin crew and enjoyed a good social life. Then, in autumn 2021, she started to hear buzzing sounds in her ear and within months had started to find noise physically painful.
‘My life as I knew it ceased to exist in August 2022,’ says Karen, who lives in Southport, Merseyside, with her husband Nick. That was the day her pain began and now: ‘Any sound – wind, rain, passing cars – is too much for me.’
Hyperacusis affects about 2 per cent of the adult population, according to the charity Tinnitus UK, although some studies suggest many more may be affected.
Karen Cook, 50, with her husband Nick. The couple live in Southport, Merseyside
More common in women than men, the cause is not always clear, says Dr Arun Pajaniappane, a consultant audiovestibular physician at Harley Street Audiovestibular Clinic.
It is more likely in people who already have some hearing loss, he says, possibly as this then drives ‘excessive amplification of sounds by the auditory pathways to the brain’, meaning moderate noises can become loud sounds to those affected.
‘It has also been linked to issues in the middle ear, such as problems with the ossicles [middle ear bones] where they fuse together, as well as migraine, stress and head injury,’ he says.
People with autism or other neuro-developmental disorders are also more likely to be affected.
Hyperacusis can co-exist with tinnitus, where those affected can hear a buzzing or ringing sound without any obvious source, in one or both ears.
It is different from misophonia, where certain sounds trigger strong emotions (such as irritation caused by the sound of someone eating) but not the pain that occurs with hyperacusis.
For Karen, hyperacusis has had such an impact on her life that she has even considered ending it, she says. This is not unheard of, says Dr Pajaniappane. ‘Unfortunately this condition can cause significant distress,’ he says. And the fact that it can be misdiagnosed can add to that, he adds.
In fact, before she was diagnosed, Karen’s symptoms were put down to everything from ‘menopause to depression and anxiety – none of which applies to me’, she says.
Karen with her husband Nick and two sons aged 12 and eight
Hyperacusis affects about 2 per cent of adults, according to the charity Tinnitus UK
She first sought help from her GP in the autumn of 2021 after developing ‘weird tinnitus’. She describes it as ‘a high-pitched ‘eeee’ sound in my left ear, but it was only present when there were other sounds and not in silence’.
That December, Karen was referred to an ear, nose and throat (ENT) specialist, who was as confused by her symptoms as she was, ‘as usually people hear their tinnitus more in silence and use sound to mask the tinnitus’.
Karen was told it would likely go in time – but it got worse. ‘My tinnitus reacted to more and more sounds,’ she recalls, and while it was typically a hissing sound, ‘the worst one, a sound like a burglar alarm, goes all through my head’.
She later learned she has ‘sound-sensitive tinnitus’ (tinnitus that occurs in the presence of sound not silence), as well as hyperacusis. The conditions affect both of Karen’s ears.
Karen saw multiple doctors and specialists as her condition worsened. She was told that it was likely that anxiety was exacerbating it. ‘I tried to explain that I didn’t have anxiety at all,’ she says, ‘but I was never listened to.’
Being diagnosed with anxiety is common for patients with hyperacusis, but Dr Pajaniappane stresses that while anxiety and depression ‘have been found to commonly occur in conjunction with hyperacusis, they’re not the main cause for symptoms’.
In June 2022, Karen started experiencing sporadic pain, too.
‘It was like a burning feeling deep in my ears, as though someone had lit a match and placed it there,’ she says.
Her GP prescribed antibiotics, but over the next few weeks the pain became more intense and chronic. More antibiotics, ibuprofen and paracetamol did nothing to help. ‘Only hours of being alone in my bedroom could take the pain down,’ says Karen.
It wasn’t until she saw another ENT specialist in February 2023 that she was given her diagnosis. The suggestion is that previous damage to her hearing, although it didn’t cause hearing loss at the time, may have played a part.
‘I was in a car accident in 2013 and the airbag deployed,’ she says. ‘The noise of a deploy is around 140 decibels, which is a level capable of causing hearing damage.’ She also spent many years working on noisy planes.
The condition is usually diagnosed by ruling out other causes, using hearing tests and checking the eardrum. ‘Only one test, known as loudness discomfort level test, can specifically assess for hyperacusis,’ says Dr Pajaniappane.
During the exam, a patient hears a series of beeping sounds at different frequencies that gradually increase in volume: they press a button or say ‘stop’ when the sound becomes uncomfortably loud. However, as the symptom severity can vary day by day this ‘limits [the test’s] usefulness,’ says Dr Pajaniappane.
The NHS treatment for hyperacusis is limited to cognitive behavioural therapy (CBT), a form of talking therapy.
Dr Pajaniappane says that this can be effective for some patients, adding that treating underlying ear conditions – ‘for example, if there is hearing loss, consider hearing aids, or surgery to treat middle ear problems’ – may help.
‘Medications for migraine, antidepressants and short-term sedative benzodiazepines to manage distress caused by the condition can all have a role to play as part of multi-faceted management.’
Karen has explored multiple treatments but her condition has only worsened. She’s tried painkillers, homoeopathy, acupuncture, nerve blocks (injections of anaesthesia to target nerves), supplements and CBT.
‘Now pretty much every sound triggers my pain and reactive tinnitus, irrespective of volume and frequency,’ she says. ‘For the past year I’ve also had pain all over my head and scalp, as well as pressure and pain in my mouth. It’s awful. I communicate with my family by whispering when I’m able, texting or writing.’
She spends most of her time in her bedroom reading or watching TV on mute, with subtitles.
‘The hardest part for me, and many others, is that my voice works, my hearing is good but I cannot speak due to the sound causing me increased pain and tinnitus,’ says Karen. ‘This is not something you can push through either. Trust me, I’ve tried.’
She adds: ‘I’m at my happiest on my better days when pain and tinnitus are at their lowest and I can have quiet cuddles and a short whisper with my children – but I’ve missed every milestone event in their lives for over two years now and am becoming more limited with each month.
‘I miss the simple things – doing the school run and taking my children to their sports activities, laughing, socialising. All those little things that make us human.’
