Hearing Loss: Come introduce yourself and connect with others

Welcome to the Hearing Loss group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with hearing loss, and friends and family supporters. Whether you were born deaf or hard of hearing, experienced hearing loss after birth or with aging, it helps to connect with others. Together we can learn from each other, support one another and share stories about living with hearing loss, coping with challenges and celebrating milestones.

Let’s chat. Why not start by introducing yourself? What is your hearing loss experience? Got a question, tip or story to share?

Interested in more discussions like this? Go to the Hearing Loss Support Group.

I am here looking for modern research in the varied causes of hearing loss BECAUSE - although I was diagnosed as not likely to ever have hearing issues, my Mother did. I was her helper till she mastered lipreading and made a new life better than many unimpaired. I learned a great deal as a girl about hearing loss from many perspectives. I never had an issue and always performed in speech song and musical instruments. Then an accident at hotflashes time with bone and joint injuries and tons of related trauma to my life emotionally found me "missing things" overnight. I worked in public and speak and hear were my gifts and key to my work, as with most of us. I lost clients, friends and even some family members, because my hearing would "short-circuit" perceptions flashing in and out. I told my doctors that I never had hearing issues and because I learned a lot about the details of hearing loss, I strongly believed my experience may not be normal deafness, but at least part traumatic/psychosomatic. My doctors were NOT helpful - "Get an aid" so I did. I was injured and in chronic pain and not able to give them an argument1 I was also NOT interested in opiates for it, so I treated me with non-pharma therapies and did well.

My art got to the White House anyway, and I was finally able to get some of the orthopedic fixes done to end the pain....MIRACLE! One day I turned on my tv and reached for the headset that lets me hear well with captions etc....and I heard WITHOUT the headset or any hearing aid!

"I KNEW IT!"
I had become resigned to being disrespected to add to my suffering and in that moment, I saw that would end, too.

"I KNEW IT!" My hunch was right - about my sudden hearing loss having a fixable cause - at least in part. So thrilling to be right about something after 55! ^_^

So when I won the breakthrough, I came here, after some searching.
I wanted doctors for hearing issues, and NOT hearing aid salesmen.

From the years with Mother, I leaned that LOTS of things can cause hearing loss and I am older and probably do need the aids I keep on hand for when the audio on a thing is too low or unclear.

But I am healed in most ways and NOW I will get me tested and some further health fixes done to optimize my natural hearing. And then I will be ready to spend significant cash on whatever I need technically to let me enjoy my good life fully.

Do not get me wrong - I know I will need some aids perhaps, and so I must be informed and think and plan and discern and then try and buy.

But I do want the science initiatives - testing for causes etc. first.
I am continuing to get the repairs to the orthopedics done and other health issue to money and emotions fixed. And I am ready to take counseling on my traumas too.

For the first time 20 years I am more or less pain free and mobile without needing to start a new country over it. And it has made that difference. I am able to listen, not struggling with my own pain so much.

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Hello - I am following this group to learn how to help my 85 year old mother who lost the hearing in her right ear 3 years ago and then in her left 2 months ago. She cannot hear anything and has been diagnosed with sensorineural hearing loss (SNHL). Along with the hearing loss, she is experiencing pain and dizziness. She has seen two ENTs, a Neuro otologist, Neurologist, had multiple CT scans and MRIs, had steroid injections in her ear, done several rounds of oral steroids, done physical therapy ... and still no understanding of what caused the hearing loss or how to alleviate the pain and dizziness.

She is feeling isolated, frustrated, and agitated ... all understandable! It is time we figure out how to help her deal with what is happening and start to live each day the best she can, instead of waiting for an answer to "why" and/or a cure.

Any suggestions for services and support for those dealing with sudden hearing loss would be very much appreciated!

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@sdsh

Hello - I am following this group to learn how to help my 85 year old mother who lost the hearing in her right ear 3 years ago and then in her left 2 months ago. She cannot hear anything and has been diagnosed with sensorineural hearing loss (SNHL). Along with the hearing loss, she is experiencing pain and dizziness. She has seen two ENTs, a Neuro otologist, Neurologist, had multiple CT scans and MRIs, had steroid injections in her ear, done several rounds of oral steroids, done physical therapy ... and still no understanding of what caused the hearing loss or how to alleviate the pain and dizziness.

She is feeling isolated, frustrated, and agitated ... all understandable! It is time we figure out how to help her deal with what is happening and start to live each day the best she can, instead of waiting for an answer to "why" and/or a cure.

Any suggestions for services and support for those dealing with sudden hearing loss would be very much appreciated!

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If there is a vestibular (balance) center within a reasonable distance, that would be a good place to start on both the dizziness and pain: If you're dizzy (esp. if you're older), your balance is undoubtedly impaired, which leads to horrific pain, just from the effort of staying upright. Good news is that balance exercises are hardly exercises, can often be worked into daily things you do anyway. That won't explain the hearing loss or help it, but will make a huge difference. Basically, once your inner ear isn't providing balance information, you naturally tend to use vision, which is all bad: every time you move or even move your head, your focal point changes, leading to total confusion. You need to learn to use your third balance system, proprioception, which is the info your get from your feet, ankles, knees, etc. In simple terms, if you're standing on a windy point, proprioception "tells" you which way to lean and just how much. I have Meniere's, have done vestibular exercises every stinkin' day for nearly 40 years; as a result I lead a more active life than most people my age (79). I still do fisheries data collection on a wild little river on Oregon's north coast, by myself, hiking miles upstream, crossing the river far from anyone else (no cell reception for 20 miles), and finish by crawling up above a waterfall. Nothing I do would be possible if I didn't do vestibular exercises daily.

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@joyces

If there is a vestibular (balance) center within a reasonable distance, that would be a good place to start on both the dizziness and pain: If you're dizzy (esp. if you're older), your balance is undoubtedly impaired, which leads to horrific pain, just from the effort of staying upright. Good news is that balance exercises are hardly exercises, can often be worked into daily things you do anyway. That won't explain the hearing loss or help it, but will make a huge difference. Basically, once your inner ear isn't providing balance information, you naturally tend to use vision, which is all bad: every time you move or even move your head, your focal point changes, leading to total confusion. You need to learn to use your third balance system, proprioception, which is the info your get from your feet, ankles, knees, etc. In simple terms, if you're standing on a windy point, proprioception "tells" you which way to lean and just how much. I have Meniere's, have done vestibular exercises every stinkin' day for nearly 40 years; as a result I lead a more active life than most people my age (79). I still do fisheries data collection on a wild little river on Oregon's north coast, by myself, hiking miles upstream, crossing the river far from anyone else (no cell reception for 20 miles), and finish by crawling up above a waterfall. Nothing I do would be possible if I didn't do vestibular exercises daily.

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Thank you for your response. I am going to tell my mom about this. I am hopeful that this will help with her dizziness and pain.

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I am using my 3rd pairs of BTE HA. The first one was made by Siemens, 2nd was by Signia (also by Siemens), the current one by Resound. They were all expensive, costing $1,500 to $2.5000 out of pocket money after insurance deductible. None of them is satisfactory, may be only 70% good. Did anyone get up to 90%? I am reluctant to seek another one, as I think they are back to 70% .

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Musicians With Hearing Loss Support Group Request

I have a friend who returned Phonak BTE HAs in the past because of the tinny quality of the music experience which is important to him as a musician. I know there are groups for musicians with hearing loss. Can anyone here direct me to them please? He is about to set out again to try to find workable hearing aids. I am happy with my two Phonak Marvels but am not listening to music.

One of the tricky aspects of finding hearing aids is that one's expectations have to be managed in regard to every aspect of hearing, and some HAs are better than others for specific needs. Assistive devices can fill in some of the holes hearing aids can't help. I just got a Roger ON iN and it is very helpful in many situations where I have trouble.

For what its worth, I did try iPod Pros briefly for listening to books and they are awesomely clear.

Thank you to anyone who can help me find support groups for musicians!!

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@sunnyone

Musicians With Hearing Loss Support Group Request

I have a friend who returned Phonak BTE HAs in the past because of the tinny quality of the music experience which is important to him as a musician. I know there are groups for musicians with hearing loss. Can anyone here direct me to them please? He is about to set out again to try to find workable hearing aids. I am happy with my two Phonak Marvels but am not listening to music.

One of the tricky aspects of finding hearing aids is that one's expectations have to be managed in regard to every aspect of hearing, and some HAs are better than others for specific needs. Assistive devices can fill in some of the holes hearing aids can't help. I just got a Roger ON iN and it is very helpful in many situations where I have trouble.

For what its worth, I did try iPod Pros briefly for listening to books and they are awesomely clear.

Thank you to anyone who can help me find support groups for musicians!!

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Hearing aids are all different. I hope your friend has an audiologist who understands his/her unique needs and interest in music. Also one who is willing to let him/her try a variety of brands and models. I don't think there is any one particular brand that is known to be best for musicians. Each person's hearing loss is also unique, so it's a challenge to fit the best aid to the individuals unique needs. The Association of Adult Musicians with Hearing Loss (AAMHL), may be of interest to your friend.

Adult musicians with hearing loss may be interested in some of the opportunities provided by the Association of Adult Musicians with Hearing Loss (AAMHL). A nonprofit organization based in Rockville, MD, the Association was founded as a resource for musicians with hearing loss to discuss the challenges they face in making and listening to music. https://www.musicianswithhearingloss.org/wp/adult-musicians/

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@ksly008

I am using my 3rd pairs of BTE HA. The first one was made by Siemens, 2nd was by Signia (also by Siemens), the current one by Resound. They were all expensive, costing $1,500 to $2.5000 out of pocket money after insurance deductible. None of them is satisfactory, may be only 70% good. Did anyone get up to 90%? I am reluctant to seek another one, as I think they are back to 70% .

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@ksly008, you may wish to join this discussion and your questions about BTE hearing aids.
- Can't Make Apples-to-Apples Comparisons of HAs: Recommendations? https://connect.mayoclinic.org/discussion/cant-make-apples-to-apples-comparisons-of-has-recommendations/

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I am joining this group to try and find some answers as to how to deal with hearing loss that has come on with aging. I am finding it difficult to enjoy some things that have been very significant to me throughout my life, primarily music, theater, and movies. I can no longer enjoy concerts, plays, movies without closed captioning, and discussions in larger groups. I have had hearing aids for about three years and wear them faithfully. I recently had my audiologist adjust the settings, but I am still very frustrated with the sound quality and my ability to hear conversations in larger groups and to enjoy performances of any kind. I also have tinnitus and am curious about others’ experience with that phenomenon.

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@kmseay

I am joining this group to try and find some answers as to how to deal with hearing loss that has come on with aging. I am finding it difficult to enjoy some things that have been very significant to me throughout my life, primarily music, theater, and movies. I can no longer enjoy concerts, plays, movies without closed captioning, and discussions in larger groups. I have had hearing aids for about three years and wear them faithfully. I recently had my audiologist adjust the settings, but I am still very frustrated with the sound quality and my ability to hear conversations in larger groups and to enjoy performances of any kind. I also have tinnitus and am curious about others’ experience with that phenomenon.

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I chose to finally get a Cochlear Implant due to just what you described. It’s healing nicely and gets turned on March 30. I am excited but also nervous. Stay tuned.

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