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?

Thanks @dorothynoz45 for you reply. I am sorry you have had to deal with this condition for so long! To answer your questions: I do not have fluid in my ears. I do have hearing loss in the ear that I perforated. I have had audiograms. It is believed that I had two issues going on at the same time – 1. perforated eardrum with resultant tinnitus in that ear and hyperacusis in the opposite (likely from nerve damage at the time of puncture) 2. Spinal CSF leak.

With your Cranial CSF leak, did you ever have extreme pressure in your head and ear? Did they do a brain MRI and if so, did you have pachymeningeal enhancement?

Also, did you ever try pink therapy or white noise or TRT for your hyperacusis? If so, did it help?

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@sirgalahad

could put little wads of cotton wool when you are in loud situations or the hearing pplugs like in aeroplanes or wear ing a radio to play lovely music to counter the pounding and repetitive noise .I am 90% deaf in left ear and I have hypercussia when it get s to much I leave

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Hi! Is your hyperacusis in the opposite ear that you have 90% hearing loss in?

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@mzhp1988

Thank you, Jamie. I have been to the Callier Clinic in Houston (years ago) but not Mayo. I will research the headphones.

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Hello everyone,
I am part of the 'Migraine', 'Hearing loss group' and am crossing over to your group. I am a member of HLAA and have had hearing loss since birth but didn't know about until I was 48 years old. I had gone through life knowing something was wrong but couldn't pin it down, until one day, a Medical Director at the place I was working – told me I was hard of hearing. WOW – what a revelation. I was dumbfounded and it was never the same after that. The years after that brought many diagnoses including moderate to severe hearing loss, hypercusis, tinnitus, vertigo and migraine syndrome. They can't test me for Meniere's disease because I have two aneurysms in my brain stem. I have a sister who has Menieres and is treated for it. I am not treated for it but instead have medication for the migraines.

Because of my brain history which includes three Motor vehicle accidents including one time coma, the neuroscience physicians and audiologists have only been able to provide me with physician therapy, water therapy, neck therapy, vision therapy; I can use a cane for stability, and I have bilateral hearing aids that I use to tone down the noise level to be sure I am not exposed to loud noise or vibrations. The hypercusis acts up when there is loud booming noises and vibrating music. I do not attend any concerts, music festivals, large crowds where their is noise above 90 dBs or any blinking lights since they will start my migraines. Sensitivities to anything that is strobe like will bring on migraines that are hard to stop,
https://www.nidcd.nih.gov/health/listen-infographic
https://www.hearingloss.org/hearing-help/hearing-loss-basics/
My audiologist has worked with my hearing aids to tone them down so that I can comfortably hear wherever I go. I know where I can go and where I should not go which of course limits me. If a place is too loud, I have programs on my hearing aids that I can use and lower my hearing aids to accommodate the noise level. However, if it is too loud, I don't stay too long or I just leave and try someplace else. I usually then write a letter to the establishment and let them know they are a hazard to the people who are going there and tell them I will not be a customer to their place -giving them information from the national websites on hearing health statistics to show what happens to ears over time.
https://www.nidcd.nih.gov/health/hearing-loss-older-adults
https://www.hearingloss.org/hearing-help/hearing-loss-basics/
48 million Americans have some sort of hearing loss and you / I are in that number. Our kids are in that growing number as well. Sobering isn't it?
Eloise /Hearing Loss Support Specialist
and HLAA Member

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I have hyperacusis and tinnitus in both ears and it is constant never stops. Have had it since about 1988 I believe, have been to different ent’s and had ear surgery to help relieve the tinnitus but made it worst. I have tried multiple things to no avail. Would sure like to find a treatment that works but so far no.

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@lhester10

I have hyperacusis and tinnitus in both ears and it is constant never stops. Have had it since about 1988 I believe, have been to different ent’s and had ear surgery to help relieve the tinnitus but made it worst. I have tried multiple things to no avail. Would sure like to find a treatment that works but so far no.

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@lhester10 Welcome to connect.If we can help we try I have tinnitus and the only thing that helps me is Mullein it's a tincture ,herbal, or there is Mullein tea

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@lhester10

I have hyperacusis and tinnitus in both ears and it is constant never stops. Have had it since about 1988 I believe, have been to different ent’s and had ear surgery to help relieve the tinnitus but made it worst. I have tried multiple things to no avail. Would sure like to find a treatment that works but so far no.

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@lhester10 I just read a great article today in the latest edition of Hearing Health magazine, which is the quarterly publication from the Hearing Health Foundation (hhf.org). They are currently doing research into hyperacusis and part of their funding is coming from a non-profit called Hyperacusis Research Ltd. (hyperacusisresearch.org). The article was written by a founder of Hyperacusis Research, Bryan Pollard, who decided to start the Foundation when he couldn't find adequate information online. Their website has a lot of good info also. HHF also is doing research into Tinnitus, so it is worth looking at both websites for info. Another source is the American Tinnitus Association (ata.org). Good luck.

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@mikepa

@lhester10 I just read a great article today in the latest edition of Hearing Health magazine, which is the quarterly publication from the Hearing Health Foundation (hhf.org). They are currently doing research into hyperacusis and part of their funding is coming from a non-profit called Hyperacusis Research Ltd. (hyperacusisresearch.org). The article was written by a founder of Hyperacusis Research, Bryan Pollard, who decided to start the Foundation when he couldn't find adequate information online. Their website has a lot of good info also. HHF also is doing research into Tinnitus, so it is worth looking at both websites for info. Another source is the American Tinnitus Association (ata.org). Good luck.

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Thank you

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@wayfarer

I'm avoiding noisy places, using earplugs to help lower the volume, and trying to condition my brain to accept the disorder.

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I also use earplugs but that seems like the plugs hold the sound in but still use them.Also have hyperacusis and it is so aggravating. People don't seem to take you serious when you tell them. Take care and hope we find a treatment so something that helps .

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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 feel the same way.Don’t want to go out because of sounds. So fustrating

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@lhester10

I have hyperacusis and tinnitus in both ears and it is constant never stops. Have had it since about 1988 I believe, have been to different ent’s and had ear surgery to help relieve the tinnitus but made it worst. I have tried multiple things to no avail. Would sure like to find a treatment that works but so far no.

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@lhester10, hyperacusis and tinnitus can seriously reduce quality of life. I found this article written for audiologists
– The Quick and Dirty on Hyperacusis https://canadianaudiologist.ca/the-quick-and-dirty-on-hyperacusis/

It suggest several approaches for audiologists to use with their patients. They are largely based on knowledge and retraining therapy. Has this type of approach ever been discussed with you?

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@colleenyoung

@lhester10, hyperacusis and tinnitus can seriously reduce quality of life. I found this article written for audiologists
– The Quick and Dirty on Hyperacusis https://canadianaudiologist.ca/the-quick-and-dirty-on-hyperacusis/

It suggest several approaches for audiologists to use with their patients. They are largely based on knowledge and retraining therapy. Has this type of approach ever been discussed with you?

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No

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@colleenyoung

@lhester10, hyperacusis and tinnitus can seriously reduce quality of life. I found this article written for audiologists
– The Quick and Dirty on Hyperacusis https://canadianaudiologist.ca/the-quick-and-dirty-on-hyperacusis/

It suggest several approaches for audiologists to use with their patients. They are largely based on knowledge and retraining therapy. Has this type of approach ever been discussed with you?

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Thank you Colleen.

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