What can be done to help with hyperacusis?
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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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
Lisa, I'd be interested in learning more about your experience with SSP, Safe and Sound Protocol and retraining the brain.
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/
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.
I bought my first condo in what I thought was a quiet area. There is an air conditioner condenser two floors below that is tormenting me at night. I have tinnitus, hyperacusis (left ear), migraines and central vertigo.
I just read that there are two kinds of hyperacusis: loudness htperacusis and pain hyperacusis. I had to go to the bathroom in the middle of the night at a time when the humming from the condenser was loud and got immediate ear pain, trigeminal and occipital neuralgia with facial numbness, and pain from neck down shoulder on left side. I also feel off balance and weak.
I went to Mass Eye and Eear and an ENT and have a neurologist but I know there is no actual treatment other than retraining programs. These are harmful for those with pain hyperacusis and it is important, I think, to add that here.
When my tinnitus worsened I read about using white or pink or brown noise overnight and bought a little gizmo. When I woke up I could not even stand. I had lost all proprioception. At this point I don't seek help, just wait for it to go away.
Since doctors cannot offer anything, they five the impression of not wanting to deal with it and, rarely,, some sympathy, but they are not experiencing this and cannot understand.
I’m experiencing most of the symptoms mentioned in other posts. I started with clogged feeling ears after Covid. Later I developed tinnitus and hyperacusis. The combination is very hard to tolerate. I also have some damage to my vision. Since my perception is so impaired it’s hard to have a normal life.
No doctor has been able to help. I go along as well as I can.
The AC condenser for my neighbor in my new condo is waking me up and I am experiencing acute pain and numbness on left side of face, head and ear, as well as vertigo and nausea. The doctor's response was to move! I haven't slept in a week.
That sounds terrible! Are you using earplugs? I know earplugs are generally discouraged for hyperacusis, but if it would help with sleep, I’d give it a try.
Also, if you have a cooperating doctor Klonopin helps a bit.
I split a .50 and take half in the morning and half right before bed. It helps me.
Good luck.
I bought ear plugs and noise cancelling ear muffs but both make it worse, though I can wear the ear muffs briefly to go to the bathroom where the noise is the worst. This is torture,
I have to do a Reclast infusion next week and will go to a motel. I am putting this condo back on the market after buying it a week ago. Seriously.
I have a few Klonopin which I am using sparingly. I am trying to avoid an afib episode from the stress. My face and head hurt really badly today too (3L30am) and the left side of face feels like I had novocaine.
Ear plugs haven’t helped me either, but they seem to help some people.
My symptoms are somewhat different from yours, but I can relate!
Maybe one of your doctors will renew Klonopin for you. It’s the only help I have found. It just takes the edge off a bit.
Good luck.