Hearing Loss: Come introduce yourself and connect with others

Progressive sensorineural (as named by ENT) hearing loss, or SNHL. Noticed about 6 years ago starting on the right side. The right side is still worse but the left is catching up. Two years ago the problem became severe enough for me to quit my job which involved a lot of phone communication with clients.

As bad as the loss of sensitivity is, the severe distortion of the sounds, especially in the lower frequencies, makes it much worse. I can hear better women's voices and discern their speech better than men's in general. I used to play instruments and sing. I can no longer listen to the music - it has become a highly irritating cacophony. I cannot discern speech coming out of the loud speakers. For example, understanding what people say on TV is virtually impossible, regardless of the volume level. Hearing aids do not help, and seemingly make things worse - I tried many to no avail. Participating in group conversations is out of the question. I can still do OK with face-to-face in a quiet room, as long as the voice is projected at me and not to the side with any reflection. Some sounds/frequencies are felt more like vibrations akin to what smartphone does when in vibrating mode.

Tinnitus is constant and overwhelming. It does not get muffled by background sounds (e.g. white noise). On contrary, the louder the ambient environment, the louder the noise in my head. I might not hear the sound itself, but the increased tinnitus and difficulty hearing would suggest me that something is humming nearby (e.g. an A/C). At times, a high pitch sound arises and then subsides, scaring me by the prospect of its staying. I feel most comfortably in complete quiet and with my ears plugged, as I feel my head acts like an echo chamber even for my own voice.

Along with the hearing loss, I developed difficulties concentrating, lack of thinking clarity and mental fatigue. Whether that and the hearing loss stem from the same cause is not determined but the tinnitus must be adding to the "foggy thinking" and fatigue.

I had no previous e.g. professional exposure to loud noises or a family history of anything similar, but ENT's diagnosis is that it is "hereditary", which I view as a cop out of inability to determine the cause. I am considering e.g. full anesthesia as a potential trigger for my hearing condition, because I went under 3 times in a raw and timing-wise the hearing loss can be linked to those events (just a speculation supported by some limited research I read on the subject).

I am not even 53 yet. i have an appointment to consider a Cochlear Implant. I am concerned with such drastic measures while being still relatively young and without clear diagnosis. My case is very rare from what I was told by the doctors.

I am looking for similar situations, causality and the way to determine it as well as alternative professional advice.

in reply to @pmrsuzie The best hearing aids I ever had were the pair of Oticon hearing aids, and they lasted a very long time. Wearing two hearing aids was not helpful to me so I "saved" one of them for when the other one stopped working. When the second one stopped working during COVID I was able to obtain a refurbished hearing aid, and it has been very helpful to me. Because I never really "used" my left ear, my audiologist determined that a hearing aid in my left ear would not work, even though she was willing to provide one to me. I do use my left ear when I use earbuds to listen to music while out walking, and I can hear the music quite well. This has helped me "retrain" my left ear; however, I do not think I will get another hearing aid for the left ear. Sometimes it feels like the noise is just too much, and I am satisfied with what I cannot hear, if that makes sense. I do rely upon lip reading as a habit, and did undergo speech therapy as a child so that my speech is clear and does not have the sound like many of those who have a profound hearing loss as I do. In fact, many people do not realize I have a hearing loss because my voice is rather low and I am able to understand most of the conversation bt lio reading. A cochlear implant has been suggested to me, but I am not interested in the device, as I had a friend who lost her hearing and was provided with an implant. It took her until just recently to start listening to music again because learning to hear with the implant is a whole different animal, as I am sure you know. My sister also has a profound hearing loss, has two very expensive hearing aids, but because she waited so long to get hearing aids, her hearing is just as bad as it always was and I still have to raise my voice quite loudly when I speak to her, especially on the phone, and as you can imagine, this can be frustrating.
Best of luck

I basically quit wearing my hearing aids when the pandemic hit. I was still working, wearing glasses, a mask and fussing with the hearing aids was just too annoying. And since then my left ear got worse. I had a revisit with the audiologist today and she did a minor adjustment. Like I said, my left hearing aid is merely a transmitter sending what I hear on the left side to the right ear. If I fuss with the left HA, I hear the rustling noise in my right ear. I'm getting used to it.
At one point I was looking for a headset with separate volume controls for the left and right. My right side isn't totally normal but way better than the left. I bought a bone conduction headset to try. The phone I had then, in the advanced sound settings, had a 'hearing test' so you could personalize the sound for the left and right. It worked great. What is especially nice about the bone conduction is that the sound is delivered through your cheekbones. You can still hear what's going on around you, So when walking outside you can hear traffic noise etc.. IMO this is great technology for people with only 'some' hearing loss. I Bluetoothed it to my phone, tablet and the tv. I listened to music through my phone outside and could still hear the birds chirping. I thought I was updating my phone but the new phone does not have the hearing test. It was a headset from Aftershokz maybe called Shokz now. I was really happy listening with it.
suzanne

Hello, I'm sorry for what you're going through. My story has a number of similarities with yours. I started losing my hearing in my left ear in my early 50s and it rapidly got to the point it was no help at all, but the right ear continued to be stable for a long time. I'm not sure when the tinnitus started, but certainly as the hearing got worse. Fast forward to my very early sixties and I suffered severe bouts of vertigo for two years and began losing the hearing in my right ear as well. I struggled on to retirement age (I was a teacher, teaching internationally in Egypt) and have now lost almost all my hearing in both ears. I could have almost written your second paragraph myself.

I seem to still be concentrating OK but it is so tiring all the time. Ironically I'm sleeping better than I ever did before. My cop out was 'a virus'. I wasn't helped by the fact that all of this happened in either Japan or Egypt. I'm not saying their health care was bad, in many ways it was very thorough, but the school nurse in Egypt was convinced I had a heart condition so I underwent all sorts of tests, all of which came back perfect as I knew they would, even though by this time I was making mutterings about Ménière's disease. It took me until 2021 to get a diagnosis after I had retired and was seen in the States, and had another severe drop in hearing. And this year I've had another to get me to the point I'm at now. Most of the worst of this was going on at the beginning of the pandemic. Bad timing!

I can't hear much of what men say at all, with or without hearing aids, and that includes my husband which is very frustrating, for him as well. Sound is generally distorted, I gave up watching television or listening to music years ago.

I was tested for a Cochlear Implant in 2021 and didn't make the cut as medicare had a high threshold at that time (relaxed a year later) but was tested again a couple of months ago and definitely qualify as things are considerably worse now. Unlike you I can't wait to get the implant in December. I have done a lot of reading, spoken to a friend of a friend who is bilaterally implanted and I have also in my teaching career taught children with implants and seen how that works for them. I know it's going to be a lot of hard work after but it really should help my quality of life. I'm still pretty busy but my life has shrunk with this hearing loss and I want it back. There is so much I can't do because I can't hear. These days most of the time the surgeons are able to save the residual hearing and a hybrid implant is used. My understanding is that the Cochlear 8, which I will be getting, can be used just as an implant, or if residual hearing remains an in the ear dome section is added to aid hearing.

I'm assuming that for you Meniere's has been mentioned and ruled out? You didn't mention vertigo and that's a big indicator, but so are one sided hearing loss initially which may later move to the other ear, and tinnitus. And lower frequency hearing loss is typical of Meniere's as well. Of the four classic symptoms you've mentioned two - the other two being the vertigo and a feeling of fullness in the ears.

I have multiple tinnitus sounds and like you I worry when it goes to a high pitched whistle in case it stays. Yesterday I got a new low hum which lasted a few hours but then I noticed it was back to 'normal'. My tinnitus is distracting, annoying, etc but I am lucky that if I get really focussed on something I can forget about it for a while. Although it's always there it just doesn't really register.

Thank you so much for your response!

And thank you for the tip. I believe I was checked for Ménière's disease, at the very least they ran some balance tests and I checked out fine. I don't have any vertigo episodes or "attacks" per se, that seem to be one of the defining symptoms of the disease. But I do have a sense of foulness in my right (worse) ear.

I read about cardiac related problems that can cause hearing loss, but they were mostly about deficiencies in vessels that limit oxygen etc. supply to some brain areas and can cause damage to the hearing nerves. It could be as simple as some shifting in the neck bones. This is something that I've never been checked against and I don't know if it's even possible.

My hunt for the cause is primarily to stop or slow down this development. I pretty much accepted that it is irreversible. Doctors nowadays always rush to treating the symptoms. I don't mind the CI solution, but still would love to know what went wrong and why.

I agree, it's always good to know what causes a problem but I think with hearing a lot of the time people don't know. I also don't think that knowing the cause is necessarily going to help in terms of stopping or slowing symptoms. I think it really is just what it is at this time. Doctors know more about hearing than they do about some other things, but there's still a lot of missing pieces. And even more so with tinnitus, which really doesn't have a lot of research directed at it at all.

Here's something quite remarkable that everyone with a hearing impairment might enjoy reading, as I did.
https://www.themarginalian.org/2022/05/17/beethoven-ode-to-joy/

Hi. Just joined the group.
My husband and I both have hearing issues. I can’t hear women/children and he can’t hear in groups or with other sounds.
We are looking at the new OTC hearing aids and wondered about experiences others have had with them.
Thanks

I have had hearing aids from Costco, about 2,000 dollars for several years. My problem is while I can hear but can’t understand the words. Do others have this issue and any hearing aid suggestions to remedy this?

As I sit here my tinnitus is not really bad...could not fall asleep...I have had it for many years and saw many doctors who thinks it is not a health problem...but for some reason getting worse...does anyone know what you can do to lessen the high pitch sound...I definitely need help