Karen Cook not only dislikes loud noises, but they also hurt her, to the point that conversations with her two children, ages 12 and 8, can only be conducted in a whisper, phone calls are impossible and even the sound of a Boiling the kettle is too much.
Karen, 50, is so sensitive to everyday noises that going out is now too painful for her and she has been confined to the house for two years.
“On the best days, I can whisper and shower,” he says. “On my worst days, I can’t get dressed or leave my room, even with earplugs and ear protectors on all day, every day.”
Karen suffers from a little-known but surprisingly common condition called hyperacusis. Those affected find normal sounds so loud that they cause distress or even pain.
For some, loud noises, such as fireworks, may be intolerable, but for severe sufferers like Karen, even innocuous everyday sounds are unbearable.
Before this happened, Karen worked as a cabin crew and enjoyed a good social life. Then, in the fall of 2021, he began hearing ringing in his ear, and after a few months, he began to find the 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 started and now: ‘Any sound (wind, rain, passing cars) is too much for me.’
Hyperacusis affects around 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, consultant audiovestibular doctor at Harley Street Audiovestibular Clinic.
It’s more likely in people who already have some hearing loss, he says, possibly because this causes “excessive amplification of sounds through the auditory pathways to the brain,” meaning moderate noises can become loud sounds for those affected. .
“It has also been linked to middle ear problems, such as problems with the ossicles (middle ear bones) where they fuse, as well as migraines, stress and head injuries,” he says.
People with autism or other neurodevelopmental disorders are also more likely to be affected.
Hyperacusis can coexist with tinnitus, where those affected may hear a ringing or buzzing 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 aggravate that situation, he adds.
In fact, before she was diagnosed, Karen’s symptoms were attributed to everything from “menopause to depression and anxiety, none of which apply to me,” she says.
Karen with her husband Nick and their two children aged 12 and eight.
Hyperacusis affects around 2 per cent of adults, according to the charity Tinnitus UK.
He first sought help from his GP in autumn 2021 after developing “strange 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.”
In December of that year, Karen was referred to an ENT doctor, who was as confused by her symptoms as she was, “as normally people hear their tinnitus more quietly and use sound to mask it.”
Karen was told it would probably go away over time, but it got worse. “My tinnitus was reacting to more and more sounds,” he recalls, and although it was usually a hiss, “the worst one, a sound like a burglar alarm, went through my head.”
He later learned that he had “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 visited several doctors and specialists as her condition worsened. They told him it was likely anxiety was exacerbating it. “I tried to explain to them that I didn’t have any anxiety,” he says, “but they never listened to me.”
Being diagnosed with anxiety is common in patients with hyperacusis, but Dr. Pajaniappane emphasizes that while anxiety and depression have been found to “commonly occur alongside hyperacusis, they are not the primary cause of the symptoms.”
In June 2022, Karen also began experiencing sporadic pain.
“It was like a burning sensation deep in my ears, like someone had struck a match and placed it there,” he says.
His GP prescribed antibiotics, but over the next few weeks the pain became more intense and chronic. More antibiotics, ibuprofen and paracetamol didn’t help at all. “Just spending a few hours alone in my room could ease the pain,” Karen says.
It wasn’t until he saw another ENT doctor in February 2023 that he was given his diagnosis. The suggestion is that previous damage to his hearing, although not causing hearing loss at the time, may have played a role.
“I was in a car accident in 2013 and the airbag went off,” he says. “The noise from a deployment is around 140 decibels, a level capable of causing hearing damage.” He also spent many years working on noisy airplanes.
The condition is usually diagnosed by ruling out other causes, using hearing tests, and checking the eardrum. “Only one test, known as a volume discomfort level test, can specifically evaluate hyperacusis,” says Dr. Pajaniappane.
During the exam, the patient hears a series of beeps at different frequencies that gradually increase in volume: he presses a button or says “stop” when the sound becomes uncomfortably loud. However, because the severity of symptoms can vary from day to day, this “limits the usefulness (of the test),” says Dr. Pajaniappane.
NHS treatment for hyperacusis is limited to cognitive behavioral therapy (CBT), a form of talk therapy.
Dr. Pajaniappane says this can be effective for some patients, adding that treating underlying ear conditions (for example, if there is hearing loss, consider hearing aids or having surgery to treat middle ear problems) may be useful.
“Migraine medications, antidepressants and short-term sedative benzodiazepines to manage distress caused by the condition may play a role as part of a multifaceted treatment.”
Karen has explored multiple treatments but her condition has only worsened. You’ve tried pain relievers, homeopathy, acupuncture, nerve blocks (anesthetic injections to target the nerves), supplements, and CBT.
“Almost all sounds now cause pain and reactive tinnitus, regardless of volume and frequency,” he says. ‘Over the last year I have also had pain throughout my head and scalp, as well as pressure and pain in my mouth. It’s horrible. I communicate with my family by whispering when I can, texting or writing.’
He spends most of his time in his bedroom reading or watching television silently, with subtitles.
“The hardest thing for me, and for many others, is that my voice works, my hearing is good but I can’t speak because the sound causes more pain and tinnitus,” says Karen. ‘This is not something you can push either. Believe me, I’ve tried.
He adds: “I am happiest on my best days, when the pain and tinnitus are at their lowest and I can have quiet hugs and a brief whisper with my children, but I have missed every important event in their lives for more than two years.” . years and I’m getting more limited every month.
‘I miss the simple things: going to school and taking my children to their sports activities, laughing and socializing. All those little things that make us human.’