News

An innovative new package of self-guided online support and information has been launched to help people with hyperacusis – severe sensitivity to everyday sounds – and those that care for them.

The ishush (internet self-help, understanding and support for hyperacusis) website has been developed by hearing experts at the NIHR Biomedical Research Centre (BRC): Nottingham. It has been created to support people who live with a condition that - at its extreme - experience sound “like a knife in the ear,” and to improve understanding of hyperacusis.

ishush has also been created to help people who are newly experiencing hyperacusis – which is not always formally diagnosed - so they can get all the information they need straight away.

Up to 14% of the population across Europe are thought to experience some form of hyperacusis, leading to severe discomfort triggered by everyday sounds such as car noise, doors shutting or keys being dropped on the floor. Even the sound of their own voices or partner’s voice can become overwhelming for some people.

The reaction to the sound often leads patients to become fearful, withdraw from social situations and work, and experience anxiety and depression.

"Sounds can be twice as loud"

Mike Meadows, a college lecturer in business studies from Brighton, lives with hyperacusis and attended the launch of ishush in Nottingham in July.

“Hyperacusis can cause a massive overreaction to noise,” explained Mike. “To me, sounds can be twice as loud as they would be to most other people.”

The close involvement of people with hyperacusis in developing ishush means that patients will be engaged with the tools and resources on the website, says Mike.

“People who have hyperacusis are the ones that best understand how noise can impact them physically and also emotionally,” he said.

“We know best what the condition is all about and how huge the emotional impact of hyperacusis can be. This project has actively involved me and listened to me as a patient, which has been important.”

In 2018, a James Lind Alliance (JLA) priority setting partnership asked people living with hyperacusis to identify the top research priorities for this distressing condition.

Around this time, Dr Kathryn Fackrell from the NIHR BRC Nottingham’s Hearing research Theme started working on an NIHR Fellowship dedicated to research into hyperacusis.

Long term impact on quality of life

She said: “Through our research programme, we have identified the need for a self-management resource for people living with hyperacusis. At its most extreme, this condition – which is less well known than tinnitus, another hearing condition – can create acute trauma and long-term impact on quality of life for people who have it.

“At its most severe, patients have reported that the impact of sounds can be like a knife in the ear.”

The BRC Nottingham Hearing team has created content and resources for the ishush website (ishush.ac.uk) including tools to help people living with the condition, promote greater understanding of hyperacusis and provide self-help strategies including those for relaxation.

Dr Fackrell, who leads a research programme looking at hyperacusis assessment and treatment, added: “The content on this website has been developing through close input from people with the condition and healthcare professionals who care for them; and it will continue to evolve.”

“The key objective is the desire for people with hyperacusis to be able to enjoy more of the things and activities that matter to them, and new experiences, rather than retreat from situations they usually find stressful because of their reaction to sounds.”

• The ishush website is at: https://ishush.ac.uk. People with hyperacusis or their carers are being encouraged to register via the website to access the full range of support that ishush can provide them with.