Hearing Loss: Come introduce yourself and connect with others

Welcome to Connect, @buzzmccracken You sure do have an unusual problem! I have never heard of such a thing. I doubt there are many audiologists who are practiced in such a unique problem, unless your hearing aids can be adjusted to a different setting. I hope you can find an audiologist who can help you, it sounds as if music is very important to you. I wish I could help more, but as I said, the only thing I can think of is a different setting on your HAs since obviously your hearing cannot be changed. You might want to see if there is a specific brand of hearing aids that is favored by people in the music industry.
JK

In response to @buzzmccracken, some of us have a similar problem, part of the special "features" of Meniere's Disease. We not only lose hearing and gain tinnitus, but fight distortion and recruitment. On top of that, our hearing (or lack thereof) fluctuates from day to day, even hour to hour. When Meniere's first became a problem for me, I was in my 40s and was an active amateur classical musician, playing in ensembles and orchestras. The godawful sounds I heard from the other members of the group plus my inability to hear anything correctly, ended that for me. For years, I couldn't stand to listen to music, because it both lacked some tones entirely and was distorted and strange. Just when I'd gotten used to listening to music a little again (adding all the missing flute sounds in my mind), Meniere's struck my so-called good ear. I had always thought tinnitus was just an annoyance that could be overcome by concentrating on other things, but this is a whole new experience, as is the terrible amount of distortion and recruitment. In my kitchen, I can often tell that something's running, but whether it's water from the faucet or the electric heat fan or an appliance, it all sounds just the same. Most days, my car runs virtually silently, but some sounds intrude and are downright painful as they slice through my head.

From what I've learned, this problem of hearing things incorrectly doesn't show up on audiograms, nor can it be corrected by resetting my aid. Worse, if I'm having an unusually good day while the test is being done or HA adjusted, it will appear that I have far more hearing than I usually have. So far, as luck will have it, I've never been tested during a bad day, even though sometimes bad days run for weeks at a time. It's all totally frustrating. I cannot listen to music at all, as all higher instruments sound like kazoos. I did try to go to a local concert done by the Air Force brass quintet. Who would have thought that the Air Force would use kazoos instead of trumpets and a French horn? AARGH! The tinnitus in my newly-affected ear is so loud that it wakes me up during the night. I've known for a long time that Van Gogh sliced off his ear due to Meniere's...and know I understand why he did it. Imagine living with this dreadful disease and not knowing why everything is so strange! Even though I know what's happening, it's very hard to put up with it. The final insult is something referred to as "auditory hallucinations" where you clearly hear something you haven't heard for years, even decades.

Although it seems counter intuitive, sometimes it helps clarify what you're hearing if you turn your aid down a bit.For me, that cuts down on the overly loud "sss" and "hard" sounds. It's still difficult for me to understand words, but less volume helps...sometimes. It doesn't work at all with music, however.

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Hello. Not sure if this is where I do this, but I just joined to get some information for my mom, who experienced profound hearing loss from her chemo treatment. I am specifically hoping for cell phone recommendations, ie ones that have good clarity, amplification, background noise reduction, anything that makes it easier for her to hear. We tried connecting her hearing aids to her phone, but she found it too overwhelming. At some point, perhaps we will revisit that option, but for now, we are just wondering which mainstream cells phones have you found to be the clearest for hearing? Thanks in advance.

Janice

Hi Janice. Cell phones have an accessibility rating. Ask the sales person if the rating is not shown. There are two letters, M and T, and range from 1 to 4. The M stands for Microphone, which is how well the cell phone works with the hearing aid microphone. The T stands for telecoil, which is how well the cell phone works with the hearing aid telecoil. If you don't know what a telecoil is, hang on, I'll get to it. The ratings, 1 to 4, is a measure of quality (1 is the worst, and 4 is the best). So, the best cell phones have an M4 T4 rating. A rating of M3 T3 is very good too but do not choose a phone below a 3 rating. Stick with M4 T4, M4 T3, M3 T4, or M3 T3. Your moms hearing aids may or may not have a telecoil. The audiologist would have to enable it if they do have them. The telecoil allows the audio from the phone to be inductively coupled to the hearing aid instead of via an audible signal. The telecoil would give a better sound than an audible sound. Mom would have to remember to turn on the telecoil program if she wanted to listen to the phone in this manner. The best way to get the sound to the hearing aid would be via Bluetooth. She would hear through both ears instead of just the ear that the phone was held up to. Many people that have hearing loss use the speakerphone option to hear via both ears if Bluetooth is not an option. I would recommend trying several phones that have at least a M3 T3 and let her try them before deciding which phone works best for her. Before my Bluetooth hearing aids, I had a Casio flip phone. I went to the Verizon store to try different phones and the Casio worked best for me. I doubt that phone is even made anymore.
Tony in Michigan

I had just gotten a used IPhone 6 for its GPS capabilities when my remaining hearing went south in May. Even older IPhones can be paired with an aid or aids, which, once you get used to it, is undoubtedly the best way to hear via phone. However, the absolute best speech-to-text app, Live Transcribe, is only available for Android devices. I bought a cheap tablet, but found its mic is nearly useless, plus it makes two things to charge and cart around. I just bought a Samsung (Android) A20 for $200 and find it a much better phone--more info at all times like temp/time, etc., far better keyboard, longer battery life. However, it cannot be paired with my aid, bringing phone conversations directly into my ear. Some of the new (read: $$$$$) Android phones can be paired. I'll be test driving the new phone with Live Transcribe Tuesday for a three-hour technical meeting. I do have a mic that's paired with my aid, and it helps in lecture settings.
I don't know how to select an audiologist that's best. I went to a clinic that specializes in CIs. The audi who tested me to see if I qualifiy for a CI (I don't, by a mere 5% at this point) told me to dump my $1,500 Costco aid, buy two $3,000+ "good" aids, and come back for another test in six months. I had a second appt., with an audiologist at the same clinic, to learn how to live as a much deafer person, and she told me that my Costco aid is great, that I should keep it until it ages out in a few years. So, two audis from the same clinic, but totally different recommendations. I am very glad that I made the second appt. as I'm not going around thinking that my aid in of low quality, won't work well for me.