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?

@scottk

I know how you feel! Without my hearing aids the world is very quiet! My hearing has really gone down hill 3-4 years ago. Even with a good pair of Phonaks I struggle with any conversation with more than two people. I have 13 grandchildren and I need to remind them that grandpa has to be very close to hear them! The important thing is that they know that I love them and try to spend as much time as I can with them. That is what is important! It has been a struggle but last week I came to the conclusion that it is more of a nuisance than anything else…..need to count all my other blessings and realize that this is just a challenge to overcome. Other than the hearing loss I am thankful that I can still get around and stay very active. But I do understand the frustration! Take care.

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You sound like a very special grampa! Do you ever take the grandkids; one at a time, to do something unique to them? I do that whenever I can, but I only have 4 of them. It's so special to just have some one on one time. It's also amazing what you learn. Good to look at all the things we can do instead of focusing on what we can't do or have lost. We need not be defined by our hearing loss unless we choose to be. Blessings to you!

Liked by barbb

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@rosemh

I have a moderate to severe hearing loss. And, I find it very frustrating to live with. 😬

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@rosemh I wonder how long you've been feeling such frustration? And which things make for frustration. I'll mention a little about myself because it might give some perspective. My hearing loss is worse than yours as it's labeled severe to profound. (Just a few years ago I replaced my hearing aid with a CI which was a good move.) It forced me to retire from my profession, which I was very invested, in at the age of almost 60 because it involved a lot of listening. Had I not had the hearing loss I would probably still be working 20 years later! When I had to retire, I very soon linked up with HLAA which then provided a whole new world of interest, challenge, new people and satisfaction. That certainly helped to significantly lessen the feelings of frustration besides developing skills with regard to coping with hearing loss.

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@barbb

@rosemh I wonder how long you've been feeling such frustration? And which things make for frustration. I'll mention a little about myself because it might give some perspective. My hearing loss is worse than yours as it's labeled severe to profound. (Just a few years ago I replaced my hearing aid with a CI which was a good move.) It forced me to retire from my profession, which I was very invested, in at the age of almost 60 because it involved a lot of listening. Had I not had the hearing loss I would probably still be working 20 years later! When I had to retire, I very soon linked up with HLAA which then provided a whole new world of interest, challenge, new people and satisfaction. That certainly helped to significantly lessen the feelings of frustration besides developing skills with regard to coping with hearing loss.

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Barb, I’m inspired by your story. You seem to have fully accepted your disability. I’m still working on that. I get frustrated because I can’t watch a lot if tv programs because I can hear, but not understand, what is being said. I use captioning when possible, but that’s not always available. I attend meetings and have trouble understanding. Although, now with COVID-19, there are mostly Zoom meetings and I love those because I can understand! I read a lot so that’s good. But I want to figure out some technology , which I know is out there, that might make it easier for me. And I’ll have to make an attitude adjustment. Thanks for “listening”.

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@rosemh

Barb, I’m inspired by your story. You seem to have fully accepted your disability. I’m still working on that. I get frustrated because I can’t watch a lot if tv programs because I can hear, but not understand, what is being said. I use captioning when possible, but that’s not always available. I attend meetings and have trouble understanding. Although, now with COVID-19, there are mostly Zoom meetings and I love those because I can understand! I read a lot so that’s good. But I want to figure out some technology , which I know is out there, that might make it easier for me. And I’ll have to make an attitude adjustment. Thanks for “listening”.

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Hi Rosemh,

Are you using hearing aids with telecoils or BlueTooth capability? If so, there is technology available to connect you directly to the sound system of your TV. Your hearing aid provider should be able to help you learn about those options.

Captioning is wonderful. Most programs are captioned. If that isn't the case in your area, especially with local news, etc., do contact the stations to let them know it's important to you. Captioning can also be provided at meetings. It's referred to as CART, which stands for computer assisted realtime transliteration. It done by a stenographer. It is equally as important as a form of 'communication access' as providing a sign language interpreter for deaf people is. You have to ask for it in advance, and insist on it if you are attending a public meeting. Churches and other non profit groups are exempt from providing communication access, but many do because they care.

There are other ways of getting access to communication, including automatic speech to text translation apps on cell phones. I'm still trying to find out if those apps can be transmitted to a screen for many to view. It would help a lot at meetings.

I hope you will find ways to adapt to your adult onset hearing loss. There are so many of us. It helps to talk about it.

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@julieo4

Hi Rosemh,

Are you using hearing aids with telecoils or BlueTooth capability? If so, there is technology available to connect you directly to the sound system of your TV. Your hearing aid provider should be able to help you learn about those options.

Captioning is wonderful. Most programs are captioned. If that isn't the case in your area, especially with local news, etc., do contact the stations to let them know it's important to you. Captioning can also be provided at meetings. It's referred to as CART, which stands for computer assisted realtime transliteration. It done by a stenographer. It is equally as important as a form of 'communication access' as providing a sign language interpreter for deaf people is. You have to ask for it in advance, and insist on it if you are attending a public meeting. Churches and other non profit groups are exempt from providing communication access, but many do because they care.

There are other ways of getting access to communication, including automatic speech to text translation apps on cell phones. I'm still trying to find out if those apps can be transmitted to a screen for many to view. It would help a lot at meetings.

I hope you will find ways to adapt to your adult onset hearing loss. There are so many of us. It helps to talk about it.

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In response to Rosemh's post, it IS difficult to accept that you cannot hear the way norms do! Almost 40 years ago, I lost hearing (and balance) on my right side due to Meniere's. Sound was distorted, and I had lots of recruitment, so I was forced to quit playing in amateur classical groups. Because I believe that creative people simply must have an outlet, I began to spend some time painting, and learned to knit involved Aran pattern pieces. The knitting really helps during meetings, as it can keep my mind busy and help me slide past when I can't hear well enough to participate. Recently, after a year of being virtually deaf because Meniere's went bilateral, I achieved a remission and regained the level of hearing I'd had over a year ago. Amazing how what used to seem inadequate is now amazingly wonderful! After I've done more of the intense work needed to gain more stability, I intend to go back to Costco and see about getting an aid for my supposedly unaidable ear. Before I went deaf, the fitter at Costco had suggested that I might want to try that, but it didn't seem like it was worth the effort and money at the time. However, now I'd like to give it a shot. During the year that I was nearly totally deaf, I learned that I really can hear a little on the right, so it may be worth it. Over the years I've finally gotten to the point where I can at least listen to music (even though it doesn't sound right), but I don't like to attempt anything I don't know at all as I can't imagine the parts I'm missing. Still, I had been going to a few classical and jazz concerts the past three or four years. Baby steps!

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@joyces

In response to Rosemh's post, it IS difficult to accept that you cannot hear the way norms do! Almost 40 years ago, I lost hearing (and balance) on my right side due to Meniere's. Sound was distorted, and I had lots of recruitment, so I was forced to quit playing in amateur classical groups. Because I believe that creative people simply must have an outlet, I began to spend some time painting, and learned to knit involved Aran pattern pieces. The knitting really helps during meetings, as it can keep my mind busy and help me slide past when I can't hear well enough to participate. Recently, after a year of being virtually deaf because Meniere's went bilateral, I achieved a remission and regained the level of hearing I'd had over a year ago. Amazing how what used to seem inadequate is now amazingly wonderful! After I've done more of the intense work needed to gain more stability, I intend to go back to Costco and see about getting an aid for my supposedly unaidable ear. Before I went deaf, the fitter at Costco had suggested that I might want to try that, but it didn't seem like it was worth the effort and money at the time. However, now I'd like to give it a shot. During the year that I was nearly totally deaf, I learned that I really can hear a little on the right, so it may be worth it. Over the years I've finally gotten to the point where I can at least listen to music (even though it doesn't sound right), but I don't like to attempt anything I don't know at all as I can't imagine the parts I'm missing. Still, I had been going to a few classical and jazz concerts the past three or four years. Baby steps!

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Hi….. Loved your comment "What used to seem inadequate is now amazingly wonderful". I recently had another significant hearing loss. Left ear pretty useless already, now right ear went from 95% word recognition during testing to 45%, enough so I could no longer understand what my husband was saying 6 inches away from me. We were writing notes and using texting to communicate. Just finished a 10 day course of oral steroids and regained 10% in that ear. It is enough so that I can hear and understand him if we are out on the porch early in the morning. So now we have our "porch time" date each morning at 7am to discuss and plan the day.
Now I am doing a course of three once a week steroid injections into my eardrum. Done it before….. not fun but worth it if it helps more. I'm hopeful but meantime am so grateful to have the 10% gain!

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Hi all, Today's member spotlight features @julieo4, a member well known to members of the Hearing Loss group. Read her interview with @hopeful33250 to learn more about Julie: her involvement in HLAA and how that led to her becoming a member and mentor for Mayo Clinic Connect, and her unrelenting advocacy for people with hearing loss.

– Staying Connected with Assistive Technology for Hearing Loss: Meet @juieo4 https://connect.mayoclinic.org/page/about-connect/newsfeed-post/staying-connected-with-assistive-technology-for-hearing-loss-meet-juieo4/

+Follow the About Connect page to see all the Member Spotlights and be notified when new spotlights are published: https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/

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@judyca7

Hi….. Loved your comment "What used to seem inadequate is now amazingly wonderful". I recently had another significant hearing loss. Left ear pretty useless already, now right ear went from 95% word recognition during testing to 45%, enough so I could no longer understand what my husband was saying 6 inches away from me. We were writing notes and using texting to communicate. Just finished a 10 day course of oral steroids and regained 10% in that ear. It is enough so that I can hear and understand him if we are out on the porch early in the morning. So now we have our "porch time" date each morning at 7am to discuss and plan the day.
Now I am doing a course of three once a week steroid injections into my eardrum. Done it before….. not fun but worth it if it helps more. I'm hopeful but meantime am so grateful to have the 10% gain!

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@judyca7 your recent hearing loss sounds similar to mine. My hearing of sounds/volume hasn’t changed much but my speech recognition has degraded badly. One ear is now profound and the other severe.

Do you know what caused your hearing loss? I know it can happen with aging, but I believe that both cirrhosis and immunosuppressants can also cause that, but rarely. I think they exacerbated my loss which started in 2004. As my husband has aged his voice is less clear so it’s almost impossible for me to hear him the first time he says something.

Having hearing problems really is isolating. I had been going to water classes prior to the pandemic. It was a large friendly class but I was definitely an outsider because it was impossible for me to communicate over the sounds in the pool area and I have to pay a lot of attention to the class leader. This despite wearing my HAs into the pool – my head does not go under.

Phone calls with customer service people are impossible! Frequently they have strong accents and they always speak fast. My doctors are pretty accommodating.
JK

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@judyca7 Judy – you mentionproblems hearing on the phone. Are you using Caption Call or Captel which I find helps immensely with hearing?

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@contentandwell

@judyca7 your recent hearing loss sounds similar to mine. My hearing of sounds/volume hasn’t changed much but my speech recognition has degraded badly. One ear is now profound and the other severe.

Do you know what caused your hearing loss? I know it can happen with aging, but I believe that both cirrhosis and immunosuppressants can also cause that, but rarely. I think they exacerbated my loss which started in 2004. As my husband has aged his voice is less clear so it’s almost impossible for me to hear him the first time he says something.

Having hearing problems really is isolating. I had been going to water classes prior to the pandemic. It was a large friendly class but I was definitely an outsider because it was impossible for me to communicate over the sounds in the pool area and I have to pay a lot of attention to the class leader. This despite wearing my HAs into the pool – my head does not go under.

Phone calls with customer service people are impossible! Frequently they have strong accents and they always speak fast. My doctors are pretty accommodating.
JK

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Hi JK….. I have Takayahu's Arteritis, an autoimmune disease diagnosed 20 years ago. It can cause all kinds of problems over time. Did very well until 4 years ago. At that time I had to be treated for a lung infection caused by the Takayahus and had to go off the immune suppressants while on a combo of three antibiotics. After 4 months on these antibiotics I developed vertigo which I have 24 hours a day. A week later a significant loss of hearing which has gradually gotten worse. It's all about keeping the immune system suppressed enough do that inflammation does not cause all kinds of problems. When inflammation from the Takayahu's gets high, there is more hearing loss.

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@contentandwell

@judyca7 your recent hearing loss sounds similar to mine. My hearing of sounds/volume hasn’t changed much but my speech recognition has degraded badly. One ear is now profound and the other severe.

Do you know what caused your hearing loss? I know it can happen with aging, but I believe that both cirrhosis and immunosuppressants can also cause that, but rarely. I think they exacerbated my loss which started in 2004. As my husband has aged his voice is less clear so it’s almost impossible for me to hear him the first time he says something.

Having hearing problems really is isolating. I had been going to water classes prior to the pandemic. It was a large friendly class but I was definitely an outsider because it was impossible for me to communicate over the sounds in the pool area and I have to pay a lot of attention to the class leader. This despite wearing my HAs into the pool – my head does not go under.

Phone calls with customer service people are impossible! Frequently they have strong accents and they always speak fast. My doctors are pretty accommodating.
JK

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JK…. more: so it is a constant balancing act. My hearing loss is also severe in one ear and profound in the other, no clarity at all now. Also have to be careful not to catch a cold or other illness. So with Covid-19 I am really just staying home 98% of the time; relying on texting friends since phone conversation is very difficult.
You are right about dealing with business calls….. the accents are difficult to work with and even when I explain the situation and ask the person to speak slowly, it often doesn't happen.
I know I have over time become much more isolated and it is often lonely. But it is just too hard to try and be with friends and be an active participant in the conversation. Can't do Zoom meetings or Skype because can't hear anything on computer. Gave up yoga and pilates because could not hear instructor. And on and on. Problems that I think all of us deal with every day. That's why this group is so important as it provides support and a chance to be heard. Thanks for listening.

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@barbb

@judyca7 Judy – you mentionproblems hearing on the phone. Are you using Caption Call or Captel which I find helps immensely with hearing?

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I have a caption call phone but it does not work very well….. often translation is incorrect and since my part of the conversation is not printed I'm left to try and figure out what was said. I have been paying several monthly bills over phone but may have to go to online accounts now. Did not really need the caption phone a few months ago but I am trying to work more with it now and get used to the errors. Will look into the Captel phone…. thanks. Judy

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@judyca7

JK…. more: so it is a constant balancing act. My hearing loss is also severe in one ear and profound in the other, no clarity at all now. Also have to be careful not to catch a cold or other illness. So with Covid-19 I am really just staying home 98% of the time; relying on texting friends since phone conversation is very difficult.
You are right about dealing with business calls….. the accents are difficult to work with and even when I explain the situation and ask the person to speak slowly, it often doesn't happen.
I know I have over time become much more isolated and it is often lonely. But it is just too hard to try and be with friends and be an active participant in the conversation. Can't do Zoom meetings or Skype because can't hear anything on computer. Gave up yoga and pilates because could not hear instructor. And on and on. Problems that I think all of us deal with every day. That's why this group is so important as it provides support and a chance to be heard. Thanks for listening.

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Do you know that the Google Meet platform has insta captions? It's not perfect, but it mirrors the apps available on the cell phone that change speech to text. ZOOM is working on this for their platform. I don't know what's taking them so long, but HLAA has been working on this for some time. ZOOM needs to hear from people with hearing loss who want/need captions. It is the way of the future and we do not want to be left out. We have a CART provider caption our HLAA chapter meetings. There's a cost to that, of course. Check out the national HLAA website for some of the webinars done on Zoom. They are all captioned. http://www.hearingloss.org The goal, always, is to keep people with hearing loss actively involved in life.

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I am wondering if anybody of this site has pulsating tinnitus and what can be done about it

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@judyca7

Hi JK….. I have Takayahu's Arteritis, an autoimmune disease diagnosed 20 years ago. It can cause all kinds of problems over time. Did very well until 4 years ago. At that time I had to be treated for a lung infection caused by the Takayahus and had to go off the immune suppressants while on a combo of three antibiotics. After 4 months on these antibiotics I developed vertigo which I have 24 hours a day. A week later a significant loss of hearing which has gradually gotten worse. It's all about keeping the immune system suppressed enough do that inflammation does not cause all kinds of problems. When inflammation from the Takayahu's gets high, there is more hearing loss.

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@judyca7 I had never heard of Takayasu's arteritis before so I googled. I’m sorry yours has degenerated, causing so many problems.

From what you say it sounds as if Takayasu's arteritis was not a direct cause of your hearing loss. Just what you didn’t need though, another complication. I’m surprised that the hearing loss has gotten worse, I thought when there was a specific cause like the antibiotics, that it didn’t usually get worse. I can’t imagine living with vertigo all the time either. I get light-headed many mornings and I hate it. I won’t drive until it goes away.

Hopefully you will not have much inflammation going forward. I don’t think the type of loss that I have is affected by inflammation, but I honestly don’t know!

We also stay home all of the time except to take walks. Everything is delivered.

We do family zooms with my son and daughter and their spouses but I end up frustrated. It is a bit better if I have the audio from my iPad stream directly into my HAs.

My HAs are Oticons and when I go to any classes the instructor is happy to wear my connect clip, an Oticon accessory that streams his/her voice directly into my HAs. Phonak has a similar device called the Roger pen. They really help a lot.
JK

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