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Hearing Loss: Come introduce yourself and connect with others
Hearing Loss | Last Active: 22 hours ago | Replies (1534)Comment receiving replies
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.
Replies to "Progressive sensorineural (as named by ENT) hearing loss, or SNHL. Noticed about 6 years ago starting..."
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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.