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.