What can be done to help with hyperacusis?

Posted by wayfarer @wayfarer, Mar 10, 2019

Hyperacusis is a rare hearing disorder. Normal sounds are amplified to the point of becoming painful. Have been to 2 ENTs, had a brain MRI, had 5 audiology tests, took prednisone meds, and tried a hearing aid. Nothing helped. Was told to learn to live with it. Does anyone have a helpful suggestion?

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@rivers99

Wayfarer–Yes, the condition of hyperacusis is rare but you are not alone. I would recommend the website of the Hyperacusis Network. I tried to include their link, but this page refused to print it. Once there, read from some of the drop-down menus and then go onto the message board. This website is not selling anything, it's a group of sufferers who pass along information to each other. Also keep in mind that you will see that the consensus for hyperacusis treatment among many audiologists is a bit counter-intuitive. Their approach involves a gradual re-introduction of daily sounds into your life while the brain slowly re-sets itself. I have also suffered from this problem and I know it's maddening, but recovery is possible.

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No she is not alone, I have tinnitus and hyperacusis and it is about to drive you crazy at times. Tried hearing aids but could not wear them because of amplification of sound and tried several other things to no avail. Should would like to find a effective treatment.

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I thought I had Hyperacausis. It turned out to be a terrible hearing aid fitting. When I found an audiologist that did Real Ear Measurements – REM, it took 4 bi- weekly sessions with exposing myself to every day noises to allow my brain to adapt, to bring my hearing aids up to my prescription. I no longer have a problem. If you don't need aids, therapies that slowly increase various sound levels while your brain adapts can be very helpful.

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@wayfarer

Mzhp1988, I know the feeling of being miserable because I have to be so careful now when I go out because of the loudness of ordinary sounds. I have missed many events at our local Performing Arts Center and even church services are painful. Many restaurants as well. I am going to try to learn from others who have the issues. Keep trying. Thanks, Wayfarer

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I have tinnitus and hyperacusis and it it awful,hearing noises 24/7 and all noises are amplified. Been to several ent’s over the years and even had ear surgery at Shea clinic in Memphis Tennessee. The surgery did not help actually made it worst but at that time I was looking for something that would give relief. Also tried other things but too no avail.The government is not spending enough on research to find a cure or treatment. Hope you all have a good day and god bless.

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Hi. I have had similar experiences to most of you. In the early days of my hearing loss, 14 or 15 years ago, I couldn't leave my apartment because everything was just too loud. I went outside once and a bus came by and it felt like a bomb had gone off in my head. Also, my tinnitus was so loud inside my head that it was hard to deal with, even if I stayed inside. After a couple of months, my hyperacusis went away, or at least my brain acclimated to it. My tinnitus never went away, it's always there, but I'm so used to it at this point that it mostly fades into the background. It's funny that just typing this out has made my tinnitus louder and more apparent. I still get hyperacusis from time to time, when I have an attack (I have Meniere's), but it usually lasts for less than a week. To this day I still don't go to loud restaurants, movie theaters, concerts, etc. I wish I could say it's less frustrating 15 years in to this, but I still find it all incredibly frustrating. I try to find restaurants that have outdoor seating and that aren't super crowded (at least when we're not in the middle of a pandemic). I have tried wearing a hearing aid in my right ear (my left is completely gone) but I had the same experience as lhester10. It just made everything too loud and painful. I'm sorry that wayfarer has been experiencing this for such a long time, I can't imagine what it would have been like if mine hadn't eased off.

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@mark888

Hi. I have had similar experiences to most of you. In the early days of my hearing loss, 14 or 15 years ago, I couldn't leave my apartment because everything was just too loud. I went outside once and a bus came by and it felt like a bomb had gone off in my head. Also, my tinnitus was so loud inside my head that it was hard to deal with, even if I stayed inside. After a couple of months, my hyperacusis went away, or at least my brain acclimated to it. My tinnitus never went away, it's always there, but I'm so used to it at this point that it mostly fades into the background. It's funny that just typing this out has made my tinnitus louder and more apparent. I still get hyperacusis from time to time, when I have an attack (I have Meniere's), but it usually lasts for less than a week. To this day I still don't go to loud restaurants, movie theaters, concerts, etc. I wish I could say it's less frustrating 15 years in to this, but I still find it all incredibly frustrating. I try to find restaurants that have outdoor seating and that aren't super crowded (at least when we're not in the middle of a pandemic). I have tried wearing a hearing aid in my right ear (my left is completely gone) but I had the same experience as lhester10. It just made everything too loud and painful. I'm sorry that wayfarer has been experiencing this for such a long time, I can't imagine what it would have been like if mine hadn't eased off.

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Have you explored the possibility of a cochlear implant?

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@julieo4

Have you explored the possibility of a cochlear implant?

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I have, Julie, thanks for asking. I'm a candidate for implants in both ears. I'm sure a cochlear implant would be helpful for speech, which would be amazing, but my first language is music (I was a professional singer until I lost the use of my second ear in 2015). After speaking with a number of people who have implants, and talking about their experiences with music, it doesn't seem like the right fit for me. Holding out for a cure in the distant future might never pan out, but the research being done by companies like Frequency Therapeutics and Otonomy gives me hope. Even Elon Musk has jumped in with Neuralink, which seems like more of a concept at this point than anything close to reality, but if you had asked people fifteen years ago whether Musk would really be able to privatize rocket manufacturing and have SpaceX rockets flying NASA astronauts into space, I think most people would have been skeptical.

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I wish you luck with the wait for a cure. Some of the research being done currently is encouraging. I hope I live long enough to see it even if I cannot benefit from it. I have more trouble with music due to my arthritic pointer hitting finger the wrong string on guitar that with my ears hearing it. I'm bimodal, using both a hearing aid and a cochlear implant. It is my miracle. I enjoy music, but music I've known most of my life that is familiar to me is what is most enjoyable. I encourage you to support the Hearing Health Foundation's research and the Hearing Loss Association of American's advocacy that encourages research in the field. Incidentally, for what it's worth. I had my CI surgery done on the ear that had 'gone down completely' and was unaided for over 25 years. I can turn it off and listen only with the aided ear, but my brain has truly wired itself to prefer using both technologies. The brain is amazing.

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That's great that you're playing guitar…I'm jealous! I still try to play sometimes, because I miss it so much, but I've lost all pitch discrimination, so it all just sounds like a distorted mess. Not sure if you'd be able to hear something that's not familiar, but this is me playing two years before I lost the second ear:

That's interesting that you got your CI after 25 years. My ear that has "gone down completely" is now at year 14. I've been told a number of times that the longer you wait, the less likely you brain is to adapt to the CI. Glad to hear that wasn't the case and that the CI/hearing aid combo has been so wonderful for you.

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@mark888

That's great that you're playing guitar…I'm jealous! I still try to play sometimes, because I miss it so much, but I've lost all pitch discrimination, so it all just sounds like a distorted mess. Not sure if you'd be able to hear something that's not familiar, but this is me playing two years before I lost the second ear:

That's interesting that you got your CI after 25 years. My ear that has "gone down completely" is now at year 14. I've been told a number of times that the longer you wait, the less likely you brain is to adapt to the CI. Glad to hear that wasn't the case and that the CI/hearing aid combo has been so wonderful for you.

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simply beautiful

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@mark888

That's great that you're playing guitar…I'm jealous! I still try to play sometimes, because I miss it so much, but I've lost all pitch discrimination, so it all just sounds like a distorted mess. Not sure if you'd be able to hear something that's not familiar, but this is me playing two years before I lost the second ear:

That's interesting that you got your CI after 25 years. My ear that has "gone down completely" is now at year 14. I've been told a number of times that the longer you wait, the less likely you brain is to adapt to the CI. Glad to hear that wasn't the case and that the CI/hearing aid combo has been so wonderful for you.

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That's beautiful Mark. I enjoyed it and heard it quite well. My guitar playing is pretty amateur, and I would not play with anyone else in the house! 🙂 As a child I had 'an ear' for music and could sit down and play most tunes I knew with chords. I had an accordion and a piano. It drove my music instructors crazy because I wasn't reading the music. Obviously, I didn't become a professional musician. Hearing loss devastated my career as a teacher. It changed my social life. It was diagnosed when I was in college and progressed fairly fast. In my 40s I met other people like me. We all agreed to not let hearing loss destroy us. Some of us changed professions. Some became advocates. I did return to teaching for a few years, but found a new niche in human services. (Nothing to do with hearing loss.) I look back and realize how fortunate I was to have learned about a national support group I could learn from. Now that I'm in my 70s and retired, I realize that the choices, challenges and changes I experienced because of my hearing loss were gifts of a unique kind. I learned how to appreciate things I'd never even noticed before. I met people who were pioneers in the cochlear implant studies. It gave me the courage to go for it. I've traveled extensively because I've been involved in HLAA.

Most important, I knew from my experiences that I wanted to remain in the hearing world. I wasn't cut out to be a person of Deaf culture.My family, friends and dreams all were hearing people and thoughts. I did a lot of research on cochlear implants before deciding to have one. A very wise person who was prominent in the field of audiology and education told me to amplify sound to the ear that had zero discrimination. I did that by using headphones with a portable radio. I didn't have a hearing aid in that ear. I listened to a lot of audio tapes and music. I do believe that helped the 'dead' ear make note of sound even though it did not understand speech. The inner ear is where sound is discriminated and identified. The cells within the cochlea are like a piano keyboard. When they die, the unique sound that each cell identifies disappears. The auditory nerve does not get stimulated to send those unique sounds to the brain for interpretation, but that nerve is NOT dead. It's just waiting for stimulation. That's what a CI does.

When I was first diagnosed with sensorineural hearing loss I was told there would never be anything in my lifetime that could help me hear. I was 21. I am so thankful that statement was not true. With the CI, my speech recognition scores went from the low 30 percent range to 95%. I still have trouble in noisy settings, and it still takes energy to concentrate for long periods of time. But I hear, communicate, sing, and enjoy life in the hearing world. Again….so thankful.

Sometimes those lemons can turn into gifts. Keep hoping. You have a beautiful voice. Keep an open mind about cochlear implants and all the new options that will evolve over your lifetime.

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@julieo4

That's beautiful Mark. I enjoyed it and heard it quite well. My guitar playing is pretty amateur, and I would not play with anyone else in the house! 🙂 As a child I had 'an ear' for music and could sit down and play most tunes I knew with chords. I had an accordion and a piano. It drove my music instructors crazy because I wasn't reading the music. Obviously, I didn't become a professional musician. Hearing loss devastated my career as a teacher. It changed my social life. It was diagnosed when I was in college and progressed fairly fast. In my 40s I met other people like me. We all agreed to not let hearing loss destroy us. Some of us changed professions. Some became advocates. I did return to teaching for a few years, but found a new niche in human services. (Nothing to do with hearing loss.) I look back and realize how fortunate I was to have learned about a national support group I could learn from. Now that I'm in my 70s and retired, I realize that the choices, challenges and changes I experienced because of my hearing loss were gifts of a unique kind. I learned how to appreciate things I'd never even noticed before. I met people who were pioneers in the cochlear implant studies. It gave me the courage to go for it. I've traveled extensively because I've been involved in HLAA.

Most important, I knew from my experiences that I wanted to remain in the hearing world. I wasn't cut out to be a person of Deaf culture.My family, friends and dreams all were hearing people and thoughts. I did a lot of research on cochlear implants before deciding to have one. A very wise person who was prominent in the field of audiology and education told me to amplify sound to the ear that had zero discrimination. I did that by using headphones with a portable radio. I didn't have a hearing aid in that ear. I listened to a lot of audio tapes and music. I do believe that helped the 'dead' ear make note of sound even though it did not understand speech. The inner ear is where sound is discriminated and identified. The cells within the cochlea are like a piano keyboard. When they die, the unique sound that each cell identifies disappears. The auditory nerve does not get stimulated to send those unique sounds to the brain for interpretation, but that nerve is NOT dead. It's just waiting for stimulation. That's what a CI does.

When I was first diagnosed with sensorineural hearing loss I was told there would never be anything in my lifetime that could help me hear. I was 21. I am so thankful that statement was not true. With the CI, my speech recognition scores went from the low 30 percent range to 95%. I still have trouble in noisy settings, and it still takes energy to concentrate for long periods of time. But I hear, communicate, sing, and enjoy life in the hearing world. Again….so thankful.

Sometimes those lemons can turn into gifts. Keep hoping. You have a beautiful voice. Keep an open mind about cochlear implants and all the new options that will evolve over your lifetime.

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Thanks, glad you liked the song. You have a great outlook on your hearing loss, Julie. I hope that at some point I'll come to view things similarly.

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Thank you Mark888. I encourage you to join HLAA. The current national president, Richard Einhorn, is a musician and composer. I have met so many interesting people, from all walks of life through HLAA. I credit HLAA for giving me my life back. The founder of the organization was once the third highest person in the CIA. He was an amazing man who learned to lipread in 7 different languages. Sadly, he is now deceased, but his legend lives on. I hope the chapters can begin meeting in person soon, and that the national conventions will resume.

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