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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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Valerie | @lacy2 | Aug 29, 2022
In reply to @jaynes40 "Ear worm and musical ear are called Tinnitus by the ENTs I know. So different: I..." + (show)
@jaynes40

Ear worm and musical ear are called Tinnitus by the ENTs I know. So different: I see nothing similar between repetitive melodies, drums, songs and Tinnitus (hissing, buzzing, humming, crickets, thunder etc), in my opinion. And yes, it’s all a bit much. Breathe…..

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Oh thanks for info. Well most mornings my adult daughter wakes up thinking of a tune as she has been a music fan all her life . But it's just a thought about the music… hard to explain. I have the regular tinnitus of taps, buzzes, squeaks etc. started years ago and then got progressively worse. Then few years ago it was as if someone had a radio playing downstairs, or neighbour…it wasnt the thought or evening humming a song I liked… hard to explain again. One night months ago I woke and it was right next to my pillow a woman from yesteryear singing to a big band and it was lovely… heard most of the song BUT no one was there singing. I supposed one could call it Tinnitus but recently an audiologist I spoke to said they call it Musical Ear. Then the hyperacusis… and its odd but miss hearing half what my husband says yet flushing toilet, turning off shower, banging a plastic empty jug on kitchen counter is SO LOUD! Add to it Eustachian tube dysfunction and ent wont put tubes in cos of my age and he said fifty per cent get infected and yes it all a bit much for sure….sometimes even after a long phone call/appointment put on speaker phone and hold a foot away, hang up, and the music, or voices start – and no its not voices telling me to do things, just voices as if people are talking and i can here…. isnt there a song 'I HEAR MUSIC AND THERES NO ONE THERE,,,,,,,,' UGH

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Colleen Young, Connect Director | @colleenyoung | Aug 29, 2022
In reply to @lsammartino "I’ve tried retraining my vagus nerve with teaching from Dr Stephen Porges on polyvagal theory, in..." + (show)
@lsammartino

I’ve tried retraining my vagus nerve with teaching from Dr Stephen Porges on polyvagal theory, in particular I bought a program to use for 10 30-min listening sessions called SSP, Safe and Sound Protocol. It uses music and the rhythms/tones of the songs to help retrain the brain as to how it hears sounds. I’ve done a lot of other vagus nerve practice this year too after my Cochlear Implant surgery for sudden single sided deafness so I can’t for sure say that the SSP was the one thing that helped, but I’m thrilled to report that I’m feeling better and making progress! If you’re interested you can message me and I’ll share more details. It was quite the journey finding sources to help. Best of luck to you. I see you and understand that sense of helplessness, friend.

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Lisa, I'd be interested in learning more about your experience with SSP, Safe and Sound Protocol and retraining the brain.

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lsammartino | @lsammartino | Aug 30, 2022
In reply to @colleenyoung "Lisa, I'd be interested in learning more about your experience with SSP, Safe and Sound Protocol..." + (show)
@colleenyoung

Lisa, I'd be interested in learning more about your experience with SSP, Safe and Sound Protocol and retraining the brain.

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Here's the link to the general info about SSP offered through Unyte. I however shopped around for a more affordable provider who'd been trained through them. She delivered the content to me through files online and I was able to click and listen with my own over the ear headphones using a splitter cord that allowed me to stream the music to my CI ear as well as my normal hearing ear at the same time.

It was 10 sessions that were 30 mins each. I have access to the music files to re listen to again if I feel I want to return to it. It felt harmless and enjoyable to me and like I said, I am doing better with loud noises and hyper sensitivity. It's been a long haul. My CI surgery was in Nov 2020, but I refused to let this sensitivity and nervous system disruption get the best of me. I have sought out all kinds of resources to stack the toolkit for healing. Eventually, it's paying off, and I hope it will for you too! Man, if it was just the hearing/aural rehab, that would have been a whole lot easier! I had no idea how much sudden hearing loss would change my life.
https://integratedlistening.com/ssp-safe-sound-protocol/

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willows | @willows | Aug 30, 2022
In reply to @lacy2 "..maybe repeating myself but audiologist not that interested, where I live, as if mainly want to..." + (show)
@lacy2

..maybe repeating myself but audiologist not that interested, where I live, as if mainly want to sell haring aids? the ents (2 with a 1 to 2 year wait) dont deal with tinnitu and when I say hyperacusis its like no one has heard that word before…
I have moderate hearing loss but dont yet wear hearing aids as living at home with husband, retired, turn up volume but dont hear beginning and end of a lot of words he says..anyway, the hyperacusis followed increase in tinnitus and other ear issues .. pain, fullness, echo, pressure which no one seems to care about/have a solution: and lately just the noise of the toilet flushing or the washing machine spinning "hurts" ears…. or toilet seat falling down….so odd to not hear yet hear too well.
My tinnitus wake me up during night, or does it? After months/maybe years I started to write down what time of night i was being woken up .. by my tinnitus .. and although not always right on the dot it seems around 1am, 3am, 4.30 to 5am and 6. Arguing with husband, yes, I do have tinnitus mostly 24/7 but surely tinnitus doesnt occur according to the clock!
Must be some things on timers like neighbours (cant see for trees and fences) that have pools, hot tubs; could be trains going by echoing off the lake; exhaust from neighbours gas water heaters on their roof… we are block from trans canada pipeline which apparently makes noise underground and city pumphouse pumping water to the water treatment plant and then to water pipes to thousands of homes??
Honestly, its been a challenge to figure out what is me and what it=s them making sort of machinery noise….but now realize I am like a jigsaw puzzle with: hearing loss, over-hearing, tinnitus, hearing City noises, cant hear some things, can hear some things…and I just try and be grateful I "can hear."!!!!!
What gets me down more now I realize its a combination of things, is the pain and pressure which last for hours to the point of crying, and now ent hinting at recurring tmj from years ago or neck issues??
Talk about wandering through an aural maze! it gets quite painful esp. right side of face etc but as I read some of the things writers are telling us about their operations, deafness, and other ear issues I am trying to be a bit more positive about the things I am coping with.Could be a lot worse and am thinking of those coping with more serious issues than mine…I hope the drs can help you and wish you all the very best outcomes J.

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Just to let you know I hear you. All your symptoms are mine as well. I too have said to myself “just be grateful that you can hear.” Even though I live in a world of noise and have to concentrate to hear what is being said, I am damaged but not deaf.

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