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 group.

@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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@arieswoman

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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I wish you all the best, and I’ll be curious to hear what you experience when the implant is turned on.

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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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@kmseay Welcome to Mayo Clinic Connect. Over 46 million people in the United States have hearing loss. While it often comes with ageing, it affects people of all ages. Hearing loss creates unique challenges. The good news is that we are living in times when technology is far more helpful than it once was. I have so much to share with you that I don't know where to begin, so will start with a few questions.
1. Have you been able to use technology that goes beyond your hearing aids at performing arts centers, movies, concerts, meetings, etc.? There is much available that people don't know about.
2. Do the hearing aids you are using have the telecoil option? Did your hearing aid provider explain that to you? Do they also have BlueTooth connectivity?
3. Are you familiar with the national consumer organization; Hearing Loss Association of America, Inc.? http://www.hearingloss.org Might there be a chapter of HLAA in your geographical region? If so, connect with them. If not, you might be interested in connecting with HLAA members online as there are a lot of opportunities to learn that way. It's very helpful to get tips on managing hearing loss through association with other people who share your experiences, concerns, frustrations, etc. Because of this organization, 'communication access' is recognized as a necessity under the American's with Disabilities Act. However, advocacy is necessary to get technology in place. It takes people to make that happen.

You mention the value of captioning. Not too long ago, captioning on TV was sporadic. It was not required. People who got involved in advocating and educating changed that. Do you know that your smartphone can use apps that will translate speech into text?

Most important: Acquired hearing loss does not have to take away things you once enjoyed. You just have to find new ways to enjoy them.

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