In this blog, members of the new James Lind Alliance Priority Setting Partnership on hyperacusis talk about how they’re going about finding out what matters to people affected by this condition and how this will shape future research.
Update: the Hyperacusis PSP Top 10 was published in November 2018. Page last checked 16 March 2023.
Hyperacusis? I confess that, until recently, I hadn’t heard of it and perhaps you haven’t either. But when I was asked to be involved in the James Lind Alliance Priority Setting Partnership (PSP) to find the top priorities for hyperacusis research, I didn’t hesitate to say yes. I have already had experience of participating in a PSP, one exploring a condition I live with – mild-moderate hearing loss, and I have seen what value it has (you can read about that in this blog).
I’m also reminded through my daily work just how important it is to research the right things, and not least because we need to spend research funding wisely. Cochrane reviewsCochrane Reviews are systematic reviews. In systematic reviews we search for and summarize studies that answer a specific research question (e.g. is paracetamol effective and safe for treating back pain?). The studies are identified, assessed, and summarized by using a systematic and predefined approach. They inform recommendations for healthcare and research., by gathering and summarising the best available evidence on a health topic, often show that there are huge evidence gaps, and we also see that primary research sometimes fails to address things that matter to people living with a condition. PSPs can help change this, by enabling people with experience as patients and their families, or as clinicians, to set the agenda for future research by working out which questions are most important to address.
I’ve asked PSP Co-ordinator Kathryn Fackrell, JLA Adviser and PSP Chair Toto Gronlund, and three steering group members to explain more about it. Linda Stratmann and Carolyn Farrell have hyperacusis and Veronica Kennedy is a Consultant Audiovestibular Physician.
What is hyperacusis and what is it like to live with it?
Kathryn: Some people have real difficulty coping with everyday sounds such as car noise, dishwashers, or people talking. This is a hearing problem called hyperacusis. It affects about one in ten adults and children. People with hyperacusis report that everyday sounds are intense, frightening, painful, or overwhelming. It can lead to feelings of fear, anger, distress, or anxiety, and people can become isolated and lose their independence. Many also have other conditions to contend with, such as tinnitus, chronicA health condition marked by long duration, by frequent recurrence over a long time, and often by slowly progressing seriousness. For example, rheumatoid arthritis. pain, depression, post-traumatic stress syndrome, autism, or dementia. Despite, the prevalenceThe proportion of a population who have a particular condition or characteristic. For example, the percentage of people in a city with a particular disease, or who smoke. of hyperacusis, and ongoing research, much is unknown and likely misunderstood.
Carolyn: How would you feel if you couldn’t go out with friends, have dinner in a lively restaurant, go to the cinema, enjoy a family gathering or even enjoy time with your children? Hyperacusis prevents me from enjoying any of these things & more. I feel like a prisoner in my own body where isolation gives the only relief in a world that does not understand.
The unique issue with hyperacusis is that it is totally reliant on my surroundings and the behaviour of others. Most of the time others are not doing anything wrong but the sounds they make can cause physical pain, which is virtually impossible for non-sufferers to understand.
Linda: I have had hyperacusis for over twenty years. It was a long time before I even knew that the pain I experienced from everyday sounds even had a name. I had a long wait to receive the only therapy available – TRT (Tinnitus Retraining Therapy). After a year it was demonstrated that this had not improved matters, and I was told that there was nothing else that could be done for me. I started a Facebook group, where people can talk honestly about how they feel, knowing that other members will understand. We swap tips on how to cope, and updates from trusted sources on current research.
My focus nowadays is trying to live with this as fully as possible without risking making it any worse, and educating the public. Wherever I go I find that the public is very aware of tinnitus, but hardly anyone has heard of hyperacusis. So I am a woman on a mission; to tell the world that hyperacusis exists and what it is, that people who suffer from everyday noise are not crazy, or neurotic or making it up to get attention, they actually have damaged hearing.
Veronica: I have worked within Audiology for many years. One of the biggest challenges we face is how to best help adults and children with hyperacusis. There are currently no guidelines to steer the healthcare professional into how to best help the individual with hyperacusis. There is little evidence on how to best assess the degree and impact of hyperacusis as well as little on the mechanisms underlying hyperacusis that might help us develop management approaches. Generally the evidence that is present, relates to adults with only negligible attention given to children for whom it can be an overwhelming and distressing condition.
What might we achieve through the work of the PSP?
Kathryn: There is a growing interest in conducting hyperacusis research and, whilst this is good news, we do need to ensure that the direction this research takes is relevant and matters to those who really understand the issues and experiences surrounding hyperacusis.
Currently, the direction of research is typically guided by funders and researchers themselves. The JLA priority setting partnership garners the valuable insights of those experiencing hyperacusis, and those around them (friends, family and health professionals) to identify the most important unanswered questions for research to address. We want to make sure every voice is heard and that what matters most is turned into priority questions that will have a real and lasting impact on future research in hyperacusis.
The Nottingham Biomedical Research Centre will ensure the priority questions identified through this process are promoted and shared with funders and commissioners of research to ensure that future research in hyperacusis will make a real difference for adults and children living with hyperacusis.
Toto: Like Sarah, I had never heard of the debilitating condition of hyperacusis. I am captivated by the enthusiasm and dedication of the members of the steering group, and that they have chosen to help determine the research agenda in this area using the James Lind Alliance approach.
Having the experience and expertise of both professionals, carers and people with lived experience, in the full process of priority setting, is what makes the JLA so special. The other essentials of JLA are methodological transparency, and a commitment to using and contributing to the existing evidence base relating to the condition.
Asking people who are in the thick of it to get involved and identify their priorities is so obvious, but so often ignored. To give all this prioritisation a bit of punch, the aim of the Hyperacusis PSP is to prioritise and publicise the top 10 research questions. Fear not though, in practice none of the questions are lost, as they are all documented one way or another, and usually the top 25 get a good airing, and are all popular targets for researchers.
Veronica: I am really excited to be part of the JLA Steering Group and seeing what really matters to those living with hyperacusis or those helping individuals with hyperacusis.
A previous JLA PSP on Tinnitus has had such an impact on promoting awareness of tinnitus and pushing research forwards particularly helping the needs of children with tinnitus. I am hopeful that the Hyperacusis PSP will also lead to significant progress not only on the research field but also on how we can practically help those troubled with hyperacusis.
Linda: It is only in the last few years that there has been significant research on hyperacusis, which gives us all hope for the future. The JLA steering group is remarkable and inspiring. For years people with hyperacusis have been distressed at the lack of education given to clinicians, many of whom seem to have no understanding of what their hyperacusis patients are experiencing. Through the steering group we can actually feed back our experience to researchers, knowing that our concerns will be taken on board, and that recommendations will be made on our behalf. It is a highly significant step forward.
Carolyn: Humans are social creatures & the isolation caused by avoiding noise is unbearable. Can you imagine dealing with this every day? Knowing the medical profession are unable to help you? This is why me and people like me need this JLA to succeed. Finally some serious research is being undertaken, giving a chance to sufferers here in the UK. Increased awareness, recognition and understanding of this distressing invisible illness is needed by the medical profession and the general public.
Update: The Top 10
The work of this PSP resulted in a list of priority questions for research (the top 10 and more). These should now influence the research agenda.
More about hearing conditions
On this page Hearing conditions: evidence, experience and resources (March 2023) we share trustworthy evidence and resources about hearing conditions and highlight opportunities to take part in research. Our blogs help to set evidence in context and make it easy to understand, and often include reflections from people living with hearing conditions and from health professionals and researchers.
Sarah Chapman has nothing to disclose.
I have been suffering from Hyperacusis since 2020. It has not been easy. Probably quiet debilitating and painful mentally to cope with the condition and mange everyday life. After mutiple tests, MRI scans and CT I have found out that there is nothing wrong with inside my ear. My situation rose from a blow to my head, and hence medical practitioners concluded it could be a nerve damage leading to extreme sensitivity to sounds.
Since July I have been on Ayurvedic treatment testing my neck n vagus nerve and I feel much better. The painful impact of sounds have reduced not gone but reduced. Also I started meditating regularly and practicing chakra healing. I realized a positive mind can be a great helper in coping with this condition. I also use ear plugs and noise cancelling head phones based on environment I am going into. I brushed away every non empathetic person who does not help me in Coping with this condition. There are still difficult days and moments. But I say don’t give up on yourself. I could have died that day post my head injury. However I am alive, with an impairment. I believe it’s a blessing to be alive. Staying positive is not easy and not effortless. However I choose to help myself Live this beautiful life!
Hey! thanks for the page. I myself suffer from Tinnitus and Hyperacusis. the problem is that Hyperacusin produces more Tinnitus sound. It became a nightmare. Doctors do not understand that sound is made worse, so today life is completely isolated. 2016 was my last mobile call. It hurt, and Tinnitus worse, so I now live in Isolated World. Where friends contacts disappeared. The doctors do not seem to be able to understand this Rise, that People get worse tinnitus, so it will be torment and Grave Tinnitus of Hyperacusis.
Thank you for your stories. My name is Tommy, from Sweden (This is Google Translate)
Hej! Tack för att sett denna sida. Min Hyperacusis, gör att Tinnitusen Stegras och får olika Ljud. jag lider redan av Grav Tinnitus. och det hemska är att Tinnitus blir värre. Jag har haft kontakter inom Läkar vården, som inte all förstått problemet. Där man faktiskt skadas ännu mer av ljud. Jag har inte talat i en Mobil telefon eller sett på TV med Ljud sedan 2016. därför att jag också fick skador av detta, trots liten volym. 2016 var min sista Guds tjänst besök också. jag spelade musik, men inte heller lyssnar jag, på Musik eller Spelar mer, sedan 2016. jag provade lyssna till natur ljud, klara hjälpligt av några, jag kan bara SMS Folk med min TYSTA TELEFON. det finns ingen Högtalare i den ens, så det går inte prata i den. all socialt Liv försvann, och Läkar besök Hörselvård, Men och andra sidan pratade jag med en Hörsel psykolog. Jag uttryckte då att ett Barn vill börja leka igen, och plötsligt, råkar barnet ut För ljud. som gör hemskt ont, med Tinnitus plågor , ont i. barnet går hem, ont i månader och brottning med Tinnitus, och tanker nu skall jag leva, börjar känna mig lite bättre, och samma upplevelse Upprepar sig, barnet gör illa sig i Psyket åter, av ljud som Smärtar och Tinnitus går upp. Efter veckor Månader kanske, Barnet mår bra, men Psyket har tagit ordentligt stryk, Barnet tänker, fler gånger, känner lite obehag, tänk om jag nu får en Smäll Till och kommer må Hiskligt dåligt. barnet är på vakt mot alla ljud, Vettskrämd. Leken tog SLUT. Vänner försvann. Allt försvann.
Det som kan lindra är kanske av att söva ned Hjärnans aktivitet, så Själen kan få lite Ro, än att
sitta krampaktigt eller trampa fram och tillbaka i lägenheten för Tinnitus, som giver svår ångest, som Ljuden Tinnitus framkallar hos själen. det står inte så mycket om hyperacusis som gör att Tinnitus ljuden blir värre. Oftast är det Smärta i öronen, men Tinnitus kommer då också kraftigare på Hyperacusus och Tinnitus Folk.
Jag informerar många människor om hyperacusis, men många visar ingen respekt alls, en deltror man är tokig också som går meD Hörsel skydd och öronproppar på. man kan få typ höra från gamla vänner att hyperacusis är inbilning, därför att stora media inte informerar om dessa åkommor. Så jag började dela ut lappar till folk, en del t.om. jäklades istället for att visa omtanke . jag sände till våra Stora TV kanaler, få se om det tar upp ämnet, visade på HYPERACUSU RESEARCH. Tack för er fina sida,
Hello again. I agree completely … DO NOT ATTEMPT to take your daughter on air travel, whether she has severe loudness H. with T, pain H, or all of the above !!!!
Hello, I have LOUDNESS hyperacusis. I am in contact with others that have this as well. My PRIMARY symptoms are amplified hearing perception of the general environment ,including voices and my own voice. with multiple signal, moderate to severe tinnitus. I’ve been diagnosed as well. I have been this way for seven years, since I had an enclosed MRI. I did have 30 decibel protection. For almost one year I had a burning pain in my left ear, jaw, and down the left side of neck, ALL THE TIME, not with sound exclusively. This did subside. I live a reclusive life now, as it is extremely difficult to leave my house. I have no medical or legal recourse. Quiet, makes the T better, sound much worse. I would like to get the word out for people like myself as well. You do not need pain to have hyperacusis. Loudness H is just as disabling. I know, I struggle every day. Best to all…..
Maciej my brother has been suffering from this condition for the last 3 months. He can’t go to work anymore he is living in hi hallway as it’s the only place in his house he finds relief no much sound. He goes to his bedroom only after he has taken sleeping tablets and xanex so he can’t get some sleep. He is totally withdrawn from all society. We live in Ireland ans cannot get any help anywhere. We have been sent home fro. Hospital A&E where even we can’t get an ENT to see him. We are all icing a nightmare . He doesn’t live close to his family as he lives on his own and is not able to bear getting in the car to get anywhere. He has spoken about been suicidal I do t know what to do. He has seeming an audiologist who thinks he possibly may have a bone broken behind his ear drum and this coUld be causing this. She wants us to get a bone scan of his ear which is will take a while to get an appointment. Also he was referred to another ENT and when I rang the secretary to see if they could hurry up the appt they said they couldn’t see him as they had too may on their waiting list. Every where we go I feel like people. Don’t want to know as they do t know anything about this condition. My brother is suffering from hyperacusis ans severe chronic tinnitus. Is thee any advice you can give me
This sounds really tough – so sorry your brother is going through this. I’m afraid we can’t give clinical advice, but your brother might like to know about a Facebook support group, which is called Hyperacusis Support and Research and can be accessed at https://www.facebook.com/groups/2414964219/
Sending best wishes,
Sarah Chapman [Editor]
The Facebook support group is called Hyperacusis Support and Research and can be accessed at https://www.facebook.com/groups/2414964219/
Hyperacusis and chronic hyperacusis are in supported and unrecognised sensory impacts.
Not exclusive o sosialising.. you can not get to services. Not use technology as noise is vibration so is all forms of energy. No ability to go to the bank. Cancelled doctor appointment agony of sound in dentists. Loss of cognition on techical and legal and accounting matters. Not having luxury of concentration or proper recognition of meaning or intent both due. To the condition but also Pharrell exhaustion and complete overwhelming disorientation. No indipendance. No ability. No persons to assist or support. A simple banking error or supplier error becomes a catastrophy. Yes Dyslexia and dispraxia an order incapacity throw into a. Mix of
Austisum just celebrates the utter vulnerability of
Those afflicted. Yet as you say..
where do we go? how do we live? Where do we die. How can we even arrange any of this. Nearly getting to a doctor is a horrid experience much worse a hospital or chemist. Shopping in a supermarket is a sunami. Buying a car, impossible without much assistance. Coping with the fatigue. Washing, keeping clean. Finding or making any order to find things. A Dream out of reach. Stress of disorder chaos and the evedent knowledge of the ruin as outcome is dibilitating and profoundly shamefull. There is no realease. No cure no support not provision.
Music is played in places of discussion making like banks.as our humanity of one to oneness slips over the edge of affordability. Nearly the sound of a breeze or flashing light or sun rays can disable thought with extreme pain.
It’s not noise. It’s any virance.
We are inefect human sensors that could be vital
Persons in the design and manufacture if all things. Indicators of unacceptable products and applications. Prodictors of our races errors and risks to over mechanise all human product.
Make to order only. Make local. Resource local
Look to uses of products in at least 5 ways to
Reuse resources. Design for waist. With waist food conversation to energy and furtulisers for souls.. reuse materials. Plant crops on diagonals on draining lads to avoid Lang and soil errosion..
Share banks instead of buying your own. Item.
Make noiseless shoos. Do not make busses and Lorie’s run deisle engine. Make electrify close to homes and commercial sector’s.80% is lost in transmission. Yes hyperacusis persons can hear this too.
I HV been trapped and alone for 20years with this
Not even able to have Gardner or cleaner or look good. How does one find support within society?
Please let me in on how to get help
Many kind thanks
My daughter has hyperacusis she is 11 and has never been on a plane however we want to go abroad this year, does the plane affect the ears???
Hello, I’m afraid I can’t offer advice on this but would suggest you contact a support group (Linda, who has contributed to this article, runs a Facebook support group) or your clinician.
I have severe hyperacusis and tinnitus. Please do Not take your daughter on a plane. The noise and vibration will be catastrophic. I know from experience.
I have had mild hyperacusis since little… however, only diagnosed when adult… meaning i lost a job due to the condition ( it involved being on the phone )
It is hard to say how sounds affect the little one and which ones… I for one love flying on airplanes… the distressing thing for me would be the people around eating and talking and certain other sounds. The airplane for me it actually can relax me when i am sitting on the window seat and look outside. if the plane is not too noisy with other people it can be enjoyable… for me train and buses are way more damaging and stressful… Again it all depends the type of noise vibration and sounds that affect the little one… not sure if I help in any way.
Best wishes <3
Earplugs will solve it all. Dont worry about it. I speak out of experience of hyperacutis
Having watched your video about Hyperacusis, I have found some inaccuracies and misconceptions. The first thing that grabbed my attention was the statement about Hyperacusis affecting 1/12 adults when in fact it affects 1/50000 people! What you are referring to is called sound sensitivity and it isn’t a problem to be solved- the noise is. I understand that
you are trying to help people and I do absolutely do support a treatment for disabling Hyperacusis that even makes moderate and soft sounds like a normal conversation unbearable. However, I am also absolutely against a ‘cure’ that will eradicate sound sensitivity completely giving people the ‘ability’ to expose themselves to what you called and portrayed as ‘everyday environmental sounds’ in your video about Hyperacusis.
Sounds such as clanking dishes, screeching buses and loud music happen to exist in the 85-120dB range (and even beyond!) which makes them infamous for placing hearing loss as the third most common health problem after heart disease and arthritis, affecting even 1 in 5 teenagers. A screeching bus is what gave me an acoustic trauma in my left ear; just a few seconds was enough to almost wipe out my ability to hear some of the higher reaches of audibility. It also meant 6 months of unblockable fullness, weird sensations and occasional tinnitus as well as permanent diplacusis.
Now this ‘everyday environmental sound’ (as you call them) could have flattened some stereocilia much earlier if not for Hyperacusis. I was born with Hyperacusis; the actual 1/50000 version not the common sound sensitivity, which gave me awareness of how unnatural the sound scape of the 21st century actually is and unlike everyone else and I knew well, to keep well away from the speakers at parties.
You see, the human (and mammalian) ear simply isn’t designed for listening to the urban cacophony of the industrialised and amplified world of the 21st century. Over thousands of years, humans (and over millions of years before that, mammals) evolved to pick out the faintest sounds at the threshold of audibility- there were no civilizational noises and things like screeching buses; that should be identified as ‘hazardous man-made noise capable of damaging hearing’ as opposed to ‘everyday environmental sounds’, were unheard of. The average environmental sound level was quite often down in the 30 decibel zone and anything loud (the clap of thunder, roaring of a wild animal, tribal war cries, volcano about to explode, etc) meant danger. That’s also why the man, shown in the video, running away from the 95dB music to the 30dB hills for some relief, is not some abnormal response but a natural defence mechanism that has been ingrained into our brains for hundreds of times longer than humans have walked on the earth. Noise is meant to induce a stress response, it’s what kept our ancestors alive. Back then if you weren’t overwhelmed by a distant clap of thunder and you just ignored that that grizzly bear rustling in the leaves, you’d risk coming face to face with death. For centuries humans lived attuned to nature and believed in powerful gods who would sometimes express their wrath through- I think you guessed it – overwhelmingly loud sounds. The Vikings feared Thor who would throw his hammer in anger sending 110 dB clashes of thunder through the air The ancient Greeks (and later the Romans) feared Poseidon who would smash his trident into the ocean floor sending tremors through the ground and Zeus who would bring about raging storms. Ancient civilisations did unimaginable things to please the gods so that they did not bring about peace-disturbing noise and destruction and now you call civilisation’s cacophony ‘everyday environmental sounds. Honestly, I find the ‘environmental’ part rather insulting to our planet; ‘environmental’ makes me think of nature and using this noun to portray our artificial world as being equal in purity with nature is a big no-no. The word ‘everyday’, however, is the word ‘normal’ in disguise and these sounds are not ‘normal’ and okay to just accept.
Sound sensitivity, and more rarely Hyperacusis, are the brakes on the ever increasing noise levels of our world and probably the only hope of our species maintaining awareness of how God intended the world to be just think of the peaceful Garden of Eden. If a way is found to eradicate it, people will no longer be bothered by the noise and will just allow the noise levels to rise accepting it as ‘normal and everyday’ whilst it silently (ironic, if you think about it) wreaks havoc on their hearing, mind and body. National parks will go to waste (as no-one will need or enjoy them anymore) and learnt deafness will set in; rendering the majority of our planet’s population oblivious to nature’s chorus of tranquillity, never knowing what they are missing.
The mentality of accepting artificial loud man made sounds; that are capable of knocking down some precious stereocilia, as ‘everyday environmental sound’ is equivalent to accepting a sedentary lifestyle and highly processed foods; with a high salt and sugar content and plenty of E numbers, as ‘normal everyday foods and lifestyle’. People are aware that highly processed foods, sedentary lifestyle are bad for health. People wear hats, sun cream and sunglasses to protect themselves from UV light despite that it has been present since the very beginning of life, unlike what you called ‘everyday environmental sounds’; many of which have existed only since the industrial revolution – i.e. about 200 years as opposed to 3-4 billion. People are becoming increasingly aware of how certain thing negatively affect their health but are still rather oblivious to what noise does to our body. I believe that the resources would be better spent on raising awareness of the negative effects of noise; creating a quieter world (i.e. putting oil on bus brakes as opposed to ‘helping’ people get used to it), and teaching people about how to protect their ears. The brain may ‘get used to’ the noise and tune it out but that doesn’t prevent it from harming the ear (and the subconscious mind) any more than ‘getting used to’ cigarette smoke will prevent it from wreaking havoc on the lungs. And once people ‘get used to it’ the situation gets worse, not better, they allow the bad to continue worsening the state of our world which is already on the brink of destruction thanks to humanity.
I hope that you will consider my point of view and look a little differently at the ‘everyday environmental sound of the 21st century.
I can relate and connect to your text so much… and think and agree with it…. <3 it is refreshing today was so overwhelming for me…. reading this Maciej meant the world … it really did … Thank you so much.
Thank you, thank you, thank you for speaking truth. I echo every word you spoke. You are correct, this is not a condition that affects one in twelve. I have had hyperacusis for roughly 12 years and have met no one to date who understands the situation. Even many professionals think of it as a novelty and muse over it rather than try and understand it or learn about it. I just wanted to say thank you for your post.