u/mexee3

Study published October 2025. I myself started taking this supplement 4 months out from onset (so, a little late for me). I've since gained back ~15db in some high frequencies (not attributing that to this supplement, but who knows).

Anyway, leaving the study here in case any of you are in the thick of the acute phase of this terrible diagnosis

disclaimer: I'm not a doctor or anyone qualified to suggest supplements! I am not telling anyone they should take NAD+

Edits/additions: I don't directly attribute my late gains to NAD+, there are several other factors that go into recovery. Take note this was a SMALL study. Emphasize: I'm not at all qualified to tell people with ssnhl to take this or any other supplement.

I have severe loss up until high frequencies at mod-severe. Distortion is awful in high frequencies and I have a young child whose laughter sounds awful with HAs on and my own voice (female) is awful with HAs and if i have to raise my voice my eyes bug out from distoriton.

I am going to start the process of talking to ENT and Audiologist about possibility of being implanted.

Just wondering if anyone here was implanted because of distortion and the short hearing range of HAs

I have severe loss up until high frequencies at mod-severe. Distortion is awful in high frequencies and I have a young child whose laughter sounds awful with HAs on and my own voice (female) is awful with HAs and if i have to raise my voice my eyes bug out from distoriton.

I am going to start the process of talking to ENT and Audiologist about possibility of being implanted.

Just wondering if anyone here was implanted because of distortion and the short hearing range of HAs

Has anyone compared aids fitted with REM versus not?

I have an appt with a university clinic that does REM for fitting, but am currently trialing an aid that was not adjusted/fitted using REM.

Wondering how much difference this can make if anyone has trialed one then the other whilst having distortion with hearing (such as having high frequencies come in overpowering/towering over other parts of speech. I kind of have almost barking and sometimes metallic high frequency distortion)

For those of you who used hearing aids before or had some poor residual hearing prior to CI, did you avoid social settings more or less after implantation? Or did this not change at all for you?

I understand that speech in noise can still be pretty challenging even with CI, but compared to an HA and distorted residual hearing...I'm just looking to see what your experiences are. Thank you!

I have normal hearing in one ear and went suddenly deaf in the other in February. I got some hearing back later, but it is moderate-severe & severe cookie-bite loss with 56% WRS and distortion of high frequencies with or without aids is terrible.

EDIT: I'm also wondering about fatigue-- better worse or same?

(see audiogram pic below) I have 56% wrs on the deafened ear and distortion with high frequencies. It has been 3 months since onset, but I don't know how a hearing aid will make things better. I have been trialing one for a week and the high frequencies come through and are so overpowering/towering over the rest of speech, I have to keep volume low but words don't come through wholly when i do that (just the shrill broken guitar string effect of high freq and some lower tones). I don't think I'll be comfortable at the final stage of hearing aid adjustment with that distortion and the still somewhat muffled voices.

Wondering if anyone had a similar experience and went with CI. If so, please share and include whether any residual hearing interferes with CI, helps, etc.

Thank you!

https://preview.redd.it/j9ng1u6p342h1.jpg?width=2488&format=pjpg&auto=webp&s=9ef4425d22a37d4e79bd48e4737fd69db23b6fe0

Lost hearing unilaterally 3 months ago.

I keep fixating on at least one thing I could have done differently with treatment, and in the days before loss.

I can't stop blaming myself even though I know that everything I did was logical.

The most recent fixation: I took Prednisone within 6 hours of onset but this morning I keep replaying that I was prescribed 40mg by urgent care instead of 60mg (I assume bc I was small : 102lb 5'6") and start 60mg dose until 4 days later after I was finally seen by ENT and got first injection day 3. 12 hours after first 40mg dose I was hit by vertigo making me a worse prognosis case. I had to skip the audiology appt I had for day after onset bc vertigo was so bad and I was just dry heaving. Husband took me back to urgent care and I got iv fluids and anti nausea. But I keep thinking I should have just not gone to urgent care ~1pm where i was kept in a room for fluids and monitoring for a couple hours and instead stuck it out until 3pm audiology appt (but i know i was dehydrated from the vomiting and i could barely stand, etc). Couldn't walk or sit up. Such messed up timing.

I make myself sick thinking about how I should have just started taking 60 despite what urgent care gave and wondering if that would have changed things. Profound loss that went to moderate severe very slowly.

This and other thoughts keep interrupting my sleep and giving me anxiety and self blame/shame

I am almost 9.5 weeks out from my sshl onset. I was profound and I know I have gained some hearing back, but it is so scattered and I am a wreck thinking about my speech discrimination being 0% at my next audiogram (I ony had 1 at onset). I have been listening to podcasts daily, and I have listened to music. I just want to hear my 4 year old's voice fully and clearly again.

Despite the read-along audiobook listening in only bad ear, the podcast read and listen and the music listening, I am not sure how much speech is coming back. I can have a phone call with my brother or husband via over-ear bluetooth with some word recognition, I can hear some loud environmental sounds (including the one bird in my yard who is loud. the rest don't reach that ear). I can't just listen to an audiobook or podcast without reading along though -- if i look away, i can't make anything out.

I am going to assume I went from profound to somewhere in severe and maybe moderate in come low frequencies (I don't get tested until May 8). I want to avoid CI for fear of worsening my balance issues if the nerve is further damaged in the process.

Anyway, hearing aids --- has anyone had success with going from basically 0% word rec (which is what I am probably at when tested by a voice/audiologist whose voice I don't know) to something usable with hearing aids? Voices don't sound robotic to me in that ear, they sound flat/like mumbles and like they are missing their sharp edges. I can catch consonants and some words if the person is a super clean speaker, but I don't think speech is usable.

also, my balance is not fully restored, and it is killing me. I used to run around outside every day after work with my child and I can't do that anymore. I'm exhausted all the time and I'm literally not who I was. I'm desperately trying to claw my way back, but it seems impossible. Do hearing aids kind of help? My balance isn't that "off" but I feel laggy when I run and my brain feels stuffed.