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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oh dear had taken 2 Tylenol this am, and took half xtra strength muscle relaxant and sort of knocked me out,, never happened before so now add anxiety, its ok no need to reply will sort itself out…. have a call into Telehealth Ontario so hopefully a nurse will have some guidance.. always cautious taking new or otc meds with glaucoma ,.. gosh didnt like that feeling of being drugged out… mind you it did help the pain somewhat..is this what we have to do, to stop pain be in a fog, oh no! didnt stop the tinnitus tho, its beyond otc reach!!!!

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I have suffered from tinnitus and hyperacusis and hearing loss as a result of exposure to very loud music for 3 hours. That was 30 years ago. I used to wear ear plugs everywhere if there was the slightest noise. It was so painful being exposed to most noises like hair dryers, and other household appliances, not to mention sounds outside the home over which I had no control. It made me nervous and always trying to anticipate where painful sounds were coming from. I was very jumpy. While my tinnitus has worsened over the years with new sounds, louder sounds, and musical sounds, the hyperacusis has improved over time. At first I removed the earplugs if sounds were not too loud for me, then over a period of years I allowed myself to be exposed to sound that was borderline uncomfortable but not quite painful. As time went on I gradually became accustomed to louder sounds and they were acceptable to me. It was all along a gradual process of re acclimating myself to sounds that were really sounding louder than in fact I knew them to be. For example, initially automobiles driving by hurt my ears. Now I feel quite comfortable with cars driving by. I can also now just barely tolerate buses providing they are not accelerating nearby. As far as going to restaurants, it depends a lot on how crowded they are and how boisterous the patrons are. I still carry my earplugs around in case I need them but that happens a lot less frequently now. So some progress has been made with respect to the hyperacusis. I think that tolérance to sounds can be accomplished by a gradual process of exposing oneself to louder noise as long a the decibel level is reasonable, for example les than 90. Just don’t imagine that sounds at a concert are going to be comfortable because music has so many highs and lows it’s best to use musicians ear plugs for attending concerts.

Hope this helps those of you fellow hyperacusis sufferers.

Willows

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@lacy2

so in effect nothing helps i feel doomed and not overreacting, i have always thought of quality not quantity, and off and on illnsses tolerable as have time in between to enjoy lifes small blessings but when its daily and no end in sight…. pretty depressing imo. and apologies to those fighting the good fight; you are amazing people.

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I am sorry…it doesn't go away. It is a symptom of a damaged brain or auditory system. If you want what you had, it will come with all of these aberrancies or speedbumps. Our brain and auditory system can only take so much of the brass and overwhelming noise assaults that we give it unwittingly. And when it has had enough – it tells us in so many words or sounds what it can not understand or take anymore. That is…it gives us phantom pain, sounds and other side effects of a system that can not quite work right like it use to.
We can use therapies and instruments to help us nurse the auditory system so that it can hobble along to help us hear and understand the spoken word. They can help us learn to stay upright and not fall down. They can help us hear just what we want to hear and not the foreign sounds that annoy us. But as research is now just looking into Pandora's box that was opened to see what else the brain has to discover about how hearing loss works, we wait,& work on our own self care as well as watch and wait for new discovers from those who are finding exciting and yet undiscovered avenues of interest that could help in the near future. Eloise

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@ptf

To Wayfarer: I've had the same experience. How do you comfortably "live with it" when every sudden sound, every continual roar of background life, makes you fold in on yourself and (at least) WANT to run to your quiet place? I have a hard time describing my discomfort even to friends who are sympathetic without going into lecture mode. And while my closest friends and family try to remember to keep their voices low, it's not sustainable. Only if I get a pained look on my face and tweak my ear like Carol Burnett did, as a sign to"lower your voice," are they reminded.

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I also have hyperacusis and it is awful.

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@earlyaudio

I have been living with hyperacusis since 2011. It was sudden onset with tinnitus and hearing loss above 4 kHz in my left ear. It destroyed my audio engineering career and rendered me suicidal, unable to tolerate every day sounds. I have been living as a hermit avoiding people as much as possible. I’m going for a consultation at UCLA Medical Center with Dr Quinten Gopen to see if I am a candidate for his surgical technique. If that doesn’t pan out I will try Dr. Herbert Silverstein in Sarasota Florida who has developed a surgical technique that might work. I have been tested for everything from MS and Minaeres and tried every healing technique to no avail. Surgery is my only hope to get my life back. Hyperacusis is soul crushing and beyond horrible.

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Agree

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@lacy2

..SOS having bad days and right now. 2 areas, bowel and ears. have written lots on here different pages cant find right now. bowel spasms, ibsd, c.diff 2018, feecal incontnence since controlling by imodium which probably not helping how i feel, finally going for colonsocopy but spoke to dr never seen befoe, surgeonm and he thinks ct scan best; but today lots of bowel spasms but what is hurtingis as written before tinnitus 24/7, ear fullness, eustachian tube and ent who is swamped says no tubes, cause eardrum puncture in fifty per cent of people, pain and pressure in ears, taking tylenol, started physio but no help today and spouse has own serioius issues i write on here once in a while just cant go on and today is one of those days and had about 3 at least this week… the pain fullness raditing pain nausea but no vomit, taken half clonazepam i honestly dont know what to do any more… its been long time over year and year before other things and been in bedroom ninety per cent of time; no wehre to phone even for chat; found a friend out of town from connect and she has been wonderful sendng emails etc. but right now am very very down – not calling suicide line, i want help for physical pain and i feel horrible as know others worse off than me… crying and moaning not helping and 2 daughters up to necks in work and household and both incuding spouse sick of hearing me whining…. bad enough almost every day, not point going to emerge, no family dr., dr. clinic closeds for weekend cant do anyting anyway…. how do people cope????? sorry…. even p.n. acting up … i wouldnt expect my dog to put up with this! J.

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I have had tinnitus for about 32 years and hyperacusis about that long. Have been to several ent doctors and tried other things but to no avail. It is horrible but you just have to go on. Carry foam earplugs in pocket almost all time and use them a lot. They help a little. Until a cure is found ,if ever, you have to be very careful.

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@lacy2

oh dear had taken 2 Tylenol this am, and took half xtra strength muscle relaxant and sort of knocked me out,, never happened before so now add anxiety, its ok no need to reply will sort itself out…. have a call into Telehealth Ontario so hopefully a nurse will have some guidance.. always cautious taking new or otc meds with glaucoma ,.. gosh didnt like that feeling of being drugged out… mind you it did help the pain somewhat..is this what we have to do, to stop pain be in a fog, oh no! didnt stop the tinnitus tho, its beyond otc reach!!!!

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Lacy, how are you doing today?

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I feel so sad for anyone going through pain, balance, ear problems of all sorts, including sensitivity to noise. What helped me some, along with what I already wrote, was keeping a journal I started with focusing on pinpointing triggers of everything from food reactions, headache, balance issues, noise reaction increases, and tinnitus. I found my biggest triggers to be changing environments (going from house to car, car to office, etc.) and stress. For changing environments, my approach, that worked to at least a half reduction of problem (usually, depending on how I otherwise felt), was to PREPARE myself ahead of time for a change. Sounds simple? Have to set my timing so 15 minutes to a half hour before I leave one location or setting, I am thinking about what I want to "tune in" or "tune out" that are noises and triggers from outside of where I am now. I am "in my mind" saying, OK, expect more (or less) noise, traffic and visual disturbances, hecticness (made a new word!) and lack of being surrounded by my comfort things. Like when getting ready for church, only I am getting ready for change in environment. If you anticipate the change and say, in your mind, OK, be prepared to tune out noise, tune out distractions (unless safety-related), you are in control of your reactions better. Then figure out how better to react! When noise bothers me now, I think of Barry Manilow or Neil Diamond songs, or my favorite hymn, Amazing Grace, which has carried me through so many times of stress. By concentrating on something like that which you already know and enjoy, you are removing the impetus of the bad thing. Maybe it is just how my mind works, but this works for me, after over 10 years of tinnitus and hyperacusis, I had to figure out something!

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@colleenyoung

Lacy, how are you doing today?

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@colleenyoung Thanks for asking. Up thru night and took plain Tylenol, morning started out same as yesterday but will not be taking muscle relaxant again any time soon. I ended up phoning Telehealth latrer in day, free talk with nurse through government here in Ontario and I explained not urgent but told her what has been happening, she was very nice and listened and did suggest I see a dr. within 3 to 4 hours; but only place to go would be Emerge and its a 4 hour wait and last time when had some horrible "spells" at home, and Dr. said go home take Tylenol, so I decided not to go and wait for my GoodDoctors.ca phone appointment and made it for mid week … just because I spoke ot someone at government Telehealth didnt mean I would get to see a Dr. at emrge any faster and also Saturday night, …. although I understand Its difficult for an emerge Dr. , you have not been his/her patient, they are stressed re time and can be held liable for what they do… and I felt I just wanted the conversation with a nurse to see if he/she thought it urgent…. but its been a painful life for me for a long time and I think I just needed a listening ear although felt quite ill.
She did give me the phone number of a pre-grief support line in a nearby community called Warm-line and I did phone. I see they have same or similar places run by volunteers r ? in parts of USA but we have none here in town where I live… . and staffed by people who have had first hand experience of illness/to the point of thinking about suicide etc and did phone and tell my mini-story… but I dont think they can give medical advice but he said some especially living alone, of all ages, make calls sometimes every day and a different person answering the phone each evening of the week 7 days a week.
I am discouraged because even mild otc pain killers should not be taken if have narrow angle Glaucoma. I felt nauseas today too my daughter visited and said to take a travel pill..Gravool.. but even these are not recommended with Glaucoma… so I just took half of one pill, but I feel its a constant worry and wonder if am going to wake up with no vision. But that muscle relaxant did its job yesterday, too well for me, scared me as I felt like a non-feeling Zombie. Daughter said, thats the idea, Mum, I said sorry dont want to get "drugged out" to not feel pain, but is this the only way out?

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@lacy2

@colleenyoung Thanks for asking. Up thru night and took plain Tylenol, morning started out same as yesterday but will not be taking muscle relaxant again any time soon. I ended up phoning Telehealth latrer in day, free talk with nurse through government here in Ontario and I explained not urgent but told her what has been happening, she was very nice and listened and did suggest I see a dr. within 3 to 4 hours; but only place to go would be Emerge and its a 4 hour wait and last time when had some horrible "spells" at home, and Dr. said go home take Tylenol, so I decided not to go and wait for my GoodDoctors.ca phone appointment and made it for mid week … just because I spoke ot someone at government Telehealth didnt mean I would get to see a Dr. at emrge any faster and also Saturday night, …. although I understand Its difficult for an emerge Dr. , you have not been his/her patient, they are stressed re time and can be held liable for what they do… and I felt I just wanted the conversation with a nurse to see if he/she thought it urgent…. but its been a painful life for me for a long time and I think I just needed a listening ear although felt quite ill.
She did give me the phone number of a pre-grief support line in a nearby community called Warm-line and I did phone. I see they have same or similar places run by volunteers r ? in parts of USA but we have none here in town where I live… . and staffed by people who have had first hand experience of illness/to the point of thinking about suicide etc and did phone and tell my mini-story… but I dont think they can give medical advice but he said some especially living alone, of all ages, make calls sometimes every day and a different person answering the phone each evening of the week 7 days a week.
I am discouraged because even mild otc pain killers should not be taken if have narrow angle Glaucoma. I felt nauseas today too my daughter visited and said to take a travel pill..Gravool.. but even these are not recommended with Glaucoma… so I just took half of one pill, but I feel its a constant worry and wonder if am going to wake up with no vision. But that muscle relaxant did its job yesterday, too well for me, scared me as I felt like a non-feeling Zombie. Daughter said, thats the idea, Mum, I said sorry dont want to get "drugged out" to not feel pain, but is this the only way out?

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Lacy, I'm glad that you were able to speak with someone at Telehealth who listened compassionately and offered a pre-grief support line. It can really help to speak to someone who has training (even volunteers are trained) to get perspective and help us focus. Stay in touch.

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My son has sensitive hearing after a car accident causing concussion one and half years ago. He has seen neurologists and has done MRI but cannot find out the issue. We are told to check ENT about his inner and middle ear which could be damaged. Could you point us to go to which doctor in Mayo, who can help check his ears. Thanks.

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@prayingmom

My son has sensitive hearing after a car accident causing concussion one and half years ago. He has seen neurologists and has done MRI but cannot find out the issue. We are told to check ENT about his inner and middle ear which could be damaged. Could you point us to go to which doctor in Mayo, who can help check his ears. Thanks.

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Hello @prayingmom, Welcome to Connect. I recently had an ENT appointment at Rochester Mayo Clinic with Dr. Michael D. Olson but mine was for breathing related issues. Here's a list of the ENT doctors and their specialties at the different Mayo locations – https://www.mayoclinic.org/departments-centers/ent-head-neck-surgery/sections/doctors/drc-20424100 There is a Request an appointment button on the page also to get you started. If you would like to call for more information and request an appointment, the contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

I can't imagine how difficult this is for your son and for you trying to help him find out what is causing the sensitive hearing and what can help fix it. Mayo I ask how old is your son?

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