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?

@julieo4

Do you experience that same kind of pain from certain sounds when you are NOT wearing hearing aids? Did your provider mention anything about a form of loudness sensitivity called hyperacusis? It does take time to get used to hearing amplified sound when you are new to hearing aids.

Jump to this post

I should have stated my problem better. Here it is.
I have had 2 sets of hearing aids during the past 7 years. At first the aids seemed ok, then they became uncomfortable,and then increasingly painful. Now I am testing a third set, hoping there is a way to suppress some frequencies, but there is not. . This set becomes painful after wearing for about 6 hours. I am not bothered by normal sound when I am not wearing hearing aids. I recently had hearing tests from 2 audiologists, and each test was extremely painful in a few high frequencies. Incidentally, one audiologist tested my comprehension of spoken words using normal volume and again with lower volume. My comprehension of the words was better at a lower volume. Both audiologists were concerned that my ability to hear speech would be worsened if they suppressed the higher frequencies. I don't think either mentioned hyperacusis, and I started to read about it yesterday. If that is my problem, have you more suggestions? I am hoping to understand my situation better.
Fortunately I can return this hearing aid with no charge, returns are very expensive for most aids.

REPLY

I have had hearing loss for 30years but am now at the point where even with hearing aids I cannot understand people and a terrified of the phone. I don’t know how to be independent at this point I. Me life (72 yrs)£

REPLY
@smbritt

I have had hearing loss for 30years but am now at the point where even with hearing aids I cannot understand people and a terrified of the phone. I don’t know how to be independent at this point I. Me life (72 yrs)£

Jump to this post

There is help available. Do you know about captioned phones? It depends on where you live, but in most states they are FREE. Check out http://www.captioncall.com and http://www.captel.com You are definitely too young to give up! There are several apps that can be downnloaded to your smartphone that transcribe speech to text so you can read what people are saying as they say it.

If hearing aids no longer help you, have you considered the possibility of a cochlear implant? Mine has been a miracle for me.

The Hearing Loss Assn. of America (HLAA) has chapters throughout the United States. The HLAA website is: http://www.hearingloss.org The mission of HLAA, which is a consumer organization, is to help people with hearing loss remain in the hearing mainstream through information sharing, education, peer support and advocacy. Chapters are listed on the website, along with a large amount of information. If you will share your location, we might be able to provide more information.

Technology that goes beyond hearing aids is extremely helpful, but so many people with hearing loss have no idea that it exists.

REPLY
@sophie32

I should have stated my problem better. Here it is.
I have had 2 sets of hearing aids during the past 7 years. At first the aids seemed ok, then they became uncomfortable,and then increasingly painful. Now I am testing a third set, hoping there is a way to suppress some frequencies, but there is not. . This set becomes painful after wearing for about 6 hours. I am not bothered by normal sound when I am not wearing hearing aids. I recently had hearing tests from 2 audiologists, and each test was extremely painful in a few high frequencies. Incidentally, one audiologist tested my comprehension of spoken words using normal volume and again with lower volume. My comprehension of the words was better at a lower volume. Both audiologists were concerned that my ability to hear speech would be worsened if they suppressed the higher frequencies. I don't think either mentioned hyperacusis, and I started to read about it yesterday. If that is my problem, have you more suggestions? I am hoping to understand my situation better.
Fortunately I can return this hearing aid with no charge, returns are very expensive for most aids.

Jump to this post

Before giving up on the hearing aids, I would ask the audiologists to lower those high frequencies so YOU can tell if it helps.

Liked by sophie32

REPLY

@smbritt Tell us a little more. Have you been to a real hearing /audiology clinic? What do you or your ENT doctor think caused your hearing loss, i.e. loud noises like in the military? Do you have Ear Drum damage, Middle Ear calcification (Otosclerosis), or Inner ear damage..? My loss of hearing started in the Military with big guns creating a shock wave that could nearly knock you over, that damaged the inner ear …those tiny hair like members that receive the vibrations have been laid flat…no longer able to send any signal to the brain… Perhaps you were in a rock band where you sat near the speaker for hours.. ?
I have Starkey smart Hearing Aids the Veterans Administration gave me, they work with my smart phone and send the phone signal directly to my fairly good ear hearing aid… It really helps.. Certainly the Closed Captioning on the TV is a must… but that helps on the phone. Tell your friends who call you to leave a message … and hopefully those voice messages will be translated to text … I text with certain people who do not enunciate very well.. Don't give up .. I am 83 , the quiet is kind of nice sometimes, but life is for living to the maximum.. Ken

REPLY
@sophie32

I should have stated my problem better. Here it is.
I have had 2 sets of hearing aids during the past 7 years. At first the aids seemed ok, then they became uncomfortable,and then increasingly painful. Now I am testing a third set, hoping there is a way to suppress some frequencies, but there is not. . This set becomes painful after wearing for about 6 hours. I am not bothered by normal sound when I am not wearing hearing aids. I recently had hearing tests from 2 audiologists, and each test was extremely painful in a few high frequencies. Incidentally, one audiologist tested my comprehension of spoken words using normal volume and again with lower volume. My comprehension of the words was better at a lower volume. Both audiologists were concerned that my ability to hear speech would be worsened if they suppressed the higher frequencies. I don't think either mentioned hyperacusis, and I started to read about it yesterday. If that is my problem, have you more suggestions? I am hoping to understand my situation better.
Fortunately I can return this hearing aid with no charge, returns are very expensive for most aids.

Jump to this post

Hello Sophie, I've read these other responses. I think you probably do have a form of hyperacusis and that you would benefit from having your audiologist turn down the sound on your hearing aids, especially the high frequencies. Then augment what you hear in these lower settings with captioning apps. You will need a smart phone for this, but I think most people with serious hearing loss realize that a smart phone is well worth the price because of the great hearing apps. If you have an iphone, you can augment your comprehension during in-person conversations with captions provided by Otter ai. I use this constantly, especially now when everyone is wearing masks. I also use it for any online meeting that is not captioned. I just set the phone up on my laptop with Otter ai picking up the sound. The captions are clear and generally, but not always, accurate. If you have an Android phone, you would use Google Live Transcribe, which is very similar. For making and receiving phone calls you can download Innocaption+ which live captions every call you make or receive and captions voice mail as well. The captioners are generally humans, though occasionally in peak periods they switch over to automatic speech recognition, which is okay but not as good.
I was a technophobe but Otter and Innocaption have saved my life.
One other point, you mention that the hearing aids become physically uncomfortable. I've experienced this. Sometimes the shape of the ear changes, if you gain or lose weight, or even with climate changes. Your audiologist should be able to adjust your ear mold so that it's more comfortable.
Good luck!

REPLY
@smbritt

I have had hearing loss for 30years but am now at the point where even with hearing aids I cannot understand people and a terrified of the phone. I don’t know how to be independent at this point I. Me life (72 yrs)£

Jump to this post

Dear smbritt…. just read your posting and have to say I really identify with what you are feeling right now. I too am at the point where the aids are not helping. I have a caption phone but often it does not print out what people are saying and I do a lot of guessing. Still it is better than nothing at all to help with phone conversations. I also tell people at the beginning of a conversation that I cannot hear and to speak slowly and clearly. They start out that way but soon forget. Now I am developing the habit of repeating back to them what they said so that I am sure I got it right. I explain why I am doing that and most people are very patient and helpful. The worse experiences for me are going out in public and trying to communicate. I just got back from having a PET scan. I could not hear the instructions given to me even with the aids. I think the tech had some experience with non-hearing people because when I told him he immediately began using a lot of hand signals and did very well. Then I repeated my understanding of the instructions back to him. It went very well.

Yesterday going out to pick out a new vanity top did not go as well. Could not hear the salesperson at all so he took off his mask and got about 3 inches from my good ear. Still could barely hear him and then started worrying about virus exposure. Finally I could not wait to get out of there and came home exhausted and with several questions unanswered, I will call the company back to ask those questions and I expect it will
go much better.

Going to the bank I write out the transaction expectation and give the note to the teller. Better than trying to speak with someone who is six feet away and has a mask. I guess my point of all this is that I have learned to be more assertive, figure out what will help and let people know. Most people will try to help. It's a big adjustment but don't give up. My hearing loss began 4 years ago. I never expected to be in this position and it is difficult, frustrating, exhausting and brings me to tears occasionally. But really there is no good alternative but to keep on participating in life and trying things that may help. Good luck to you! Judy

REPLY
@sophie32

I should have stated my problem better. Here it is.
I have had 2 sets of hearing aids during the past 7 years. At first the aids seemed ok, then they became uncomfortable,and then increasingly painful. Now I am testing a third set, hoping there is a way to suppress some frequencies, but there is not. . This set becomes painful after wearing for about 6 hours. I am not bothered by normal sound when I am not wearing hearing aids. I recently had hearing tests from 2 audiologists, and each test was extremely painful in a few high frequencies. Incidentally, one audiologist tested my comprehension of spoken words using normal volume and again with lower volume. My comprehension of the words was better at a lower volume. Both audiologists were concerned that my ability to hear speech would be worsened if they suppressed the higher frequencies. I don't think either mentioned hyperacusis, and I started to read about it yesterday. If that is my problem, have you more suggestions? I am hoping to understand my situation better.
Fortunately I can return this hearing aid with no charge, returns are very expensive for most aids.

Jump to this post

@sophie32
I have been wearing hearing aids for 40 years and , along with the other excellent posts here, I just want to add a couple of comments. I wear 2 aids and have a profound loss….the aids are Phonak Nadia ultra power.

First, lowering the high frequencies will not lessen your understanding of speech necessarily. I hear and understand better in the lower tones. I just had another adjustment last week because environmental sounds have become too loud but the sounds don’t hurt. They do interfere with voices and started to sound distorted. I have lost around 5 decibels which is a lot for me.
I asked my Audi to lower the loudness while preserving the voice sounds and making the voices stronger. She did and the easiest way to explain what she did is she adjusted all sound on a tilt level. Meaning, the high end of the tilt is voice and the lower end is environmental.
So, while speech is indeed in the high frequencies, these frequencies can be suppressed without sacrificing comprehension.
As a result I actually understand more speech after this latest adjustment. I even get some things through masks now and that is an accomplishment. It took a few days to get use to the lower tones of the environment and , while I can’t hear a tea kettle, I still hear emergency vehicles and my phone etc. And it is a reasonable non stressing stressing.

I use 4 programs…1 is the start up program for daily life…all around sound. 2 is the directional voice program usually used in a quiet one on one setting. I often switch to this program when I am shopping or in gym class because it eliminates most background noise.
3 is a directional mic with some lowering of background noise but more background noise than 2. 4 is my telecoil program which I have programed for mic only (no background)

I hope my explanation is understandable. Tell the Audis to lower those high frequencies…..While most Audis are knowledgeable, some don’t experiment enough or even know enough about what can be done with hearing aid programming.,and You are the boss when you are sitting in that chair on the office.

FL Mary

REPLY

Hi everyone.

I am new to the community here. I've had hearing aids for over 10 years now. Can't say I'm a huge fan, but I am very grateful to have the opportunity to still hear. Some of my friends are using little bluetooth hearing aids. I'm not sure what the difference will be?

I also am wondering about buying hearing aids online. I've always gone to an audiologist and I feel like something could go wrong buying online? I found some different hearing aids online.

I'm thinking of going with the first one they recommended — the 'invisible fit'. Does anyone have experience with this?

REPLY

@bnals I have hearing aids for nearly 50 years.. It was recommended that I have a cochlear implant back around 1980 but I never did that … they were going to do it on my bad ear (with profound loss) but I thought I would make the hearing aids (HA) work for me…(I was a University Professor for 20 years after that initial set of HAs… one develops all sorts of ways to cope and get by…. I have alway had over-the-ear HAs and Now I have rechargeable ones that are much smaller than before .. the ear mold is much smaller and easier to deal with .. Not having to deal with batteries is great.. so much less hassle.. I have HAs in both ears but the one in the Left (profound loss) simply accepts the sound from that direction and rebroadcasting it to the right ear… that left ear mold has a big hole in it… But the bluetooth connection of the remote microphone (that works with my smart phone) is the greatest help.. So I received my newest HAs from the Veterans Administration I had paid for my other ones… Always resenting how much HA companies spent on advertising.. I had tried several cheap ambient sound amplifiers but they really were not very suitable… more trouble than they were worth sometimes.. I would pay for several of those with a credit card as they were purchased online. The great part about that was that I could return them that way and there was NO hassle… Good Luck .. but a lot of things have happened in the HA world in the last 10 years.. Try the new technology, it is really so much better than what was available before.. Ken

REPLY

I also have profound hearing loss but I'm able to wear regular hearing aids inside my ears. Most people don't even notice them. They also work well for TV and online when I need sound.

REPLY
@bnals

Hi everyone.

I am new to the community here. I've had hearing aids for over 10 years now. Can't say I'm a huge fan, but I am very grateful to have the opportunity to still hear. Some of my friends are using little bluetooth hearing aids. I'm not sure what the difference will be?

I also am wondering about buying hearing aids online. I've always gone to an audiologist and I feel like something could go wrong buying online? I found some different hearing aids online.

I'm thinking of going with the first one they recommended — the 'invisible fit'. Does anyone have experience with this?

Jump to this post

The number one key to having a successful experience with hearing aids is to have them properly fit for your hearing loss. If all you need is amplification, then an over the counter/online personal sound amplification product (PSAP) may be all you need. However, if you have problems understanding words/clarity, you will want well fit hearing instruments.

You can buy hearing aids online on eBay and a few other places, but who is going to program them for you? Hearing aids definitely cost too much. because of that many people who could benefit from them are unable to get them. On the other hand, they have improved so much over the last decade, that you may be pleasantly surprised at the improvement over 10 years.

BlueTooth can be wonderful because it can connect you wirelessly to your smartphone, and also to other hearing aid accessories and audio devices. It does add cost to the product though, and the BT feature has to be paired with other devices.

I hope you find the right answer.

REPLY
@katherinebouton

Hello Sophie, I've read these other responses. I think you probably do have a form of hyperacusis and that you would benefit from having your audiologist turn down the sound on your hearing aids, especially the high frequencies. Then augment what you hear in these lower settings with captioning apps. You will need a smart phone for this, but I think most people with serious hearing loss realize that a smart phone is well worth the price because of the great hearing apps. If you have an iphone, you can augment your comprehension during in-person conversations with captions provided by Otter ai. I use this constantly, especially now when everyone is wearing masks. I also use it for any online meeting that is not captioned. I just set the phone up on my laptop with Otter ai picking up the sound. The captions are clear and generally, but not always, accurate. If you have an Android phone, you would use Google Live Transcribe, which is very similar. For making and receiving phone calls you can download Innocaption+ which live captions every call you make or receive and captions voice mail as well. The captioners are generally humans, though occasionally in peak periods they switch over to automatic speech recognition, which is okay but not as good.
I was a technophobe but Otter and Innocaption have saved my life.
One other point, you mention that the hearing aids become physically uncomfortable. I've experienced this. Sometimes the shape of the ear changes, if you gain or lose weight, or even with climate changes. Your audiologist should be able to adjust your ear mold so that it's more comfortable.
Good luck!

Jump to this post

Thanks for your response. Very useful, as were the others. I talked to an audiologist today who gets no commission for selling an aid. She gave me a good perspective. I am testing my Kirkland Signature aids, sold by Costco, (which also has no commission for sales people.) Their are much less expensive than many good aids, and I might find them quite serviceable if they could adjust the higher frequencies. Also, I believe I was mistakenly told to download the wrong hearing app on my Iphone, as the app is very clumsy to use. If that cannot be done, I will get a more expensive aid. Thanks for talking about those very useful apps you have. I will look into them.

REPLY

The VA gave me a Starkey Hearing Aid that uses an App called "Thrive" that I use. I hope to get a new smarter phone soon that will use more of the functions available on "Thrive" …

REPLY
Please login or register to post a reply.