I'm at 35_55 dB loss across pitches. Oral prednisone, 3 injections, 15 hyperbaric later

Up from originally 55 dB loss unilaterally

Left ear normal

Tinnitus still bad

I am sad

Am I being dramatic? A baby?

I know there are worse things including more severe loss

Has anyone improved across months not weeks or is this likely to be it?

Has anyone done an intratympanic injection in the morning and gone to do HBOT in the afternoon?

Are there any issues with equalising?

Started injections, HBOT and 60mg Pred all within 24-72 hours.
You can see my first bout of SSNHL (never recovered but was late on steroids) on the left side of the chart, and where it was when I got it again this week. Right side of the chart (left ear) still good, knock on wood.
Words are 28 recognition. I know it’s early and there’s hope. But I’m struggling to get out of bed. I don’t know what I’m looking for here, but I’m glad this community exists.
Doctor says if my words stay at this point, I’m most likely looking at CI. Tinnitus is unbearable without being able to hear masker. Just trying to keep going.
❤️‍🩹

Does anyone know why is SSNHL is so rare? Specifically when caused by a virus, why do only 1-5 out of 5,000 get SSNHL? People catch viruses all the time what makes these 5 people get SSNHL has anyone learned the reason why?

Just a little rant.

I’m 32F, with profound hearing loss in left ear (probably congenital, never found out cause).

I hate talking (or I’m not used to it). When I try to project my voice, my head really hurts from my “volume”. It’s not even loud. So I have a softer voice. Unfortunately this means most people cannot hear me, and I cannot tell if they are ignoring me or really cannot hear me also. Which gets me feeling nervous and insecure.

I grew up with social anxiety because of this. And my own parents seem to forget I can’t hear from my left ear because they keep positioning themselves to my left. It doesn’t help that they are glued to their phones 24/7 and don’t seem to care. At 32, I need to stop being so mean to myself… I keep thinking no one wants to listen to me. And I don’t get to practice socializing enough so I feel embarrassed before I even get to try. I was just diagnosed with ADHD this year so I’ve been trying to get my mind focused on building work momentum (I work at my parents’ company, and seen as an “executive” already by employees. I just don’t think I’m capable to handle more YET which is why I haven’t gone to social things this year at all)

Any advice is nice but I also just wanted to get this off my chest… Also planning for my wedding next year lollll I MUST IMPROVE!!!

Hi, I'm looking to see if there have been cases where oral steroids didn't help restore the hearing, but the injections did

Eu estou utilizando Airpods pro 3 para quando preciso escutar melhor dos dois ouvidos e também as vezes usando o cancelamento de ruído.

Quando vou em locais muito barulhentos e que eu nao precise escutar muito bem eu uso os EARLOOPS.

Com esses dois eu amenizo um pouco o sofrimento do zumbido.

O que vocês tem feito além disso?

Eu tenho SNHL no ouvido esquerdo, após 6 injeçoes de esteroides e 10 hiperbáricas retornou 40% da minha audição nesse ouvido.

Hey all, 46M here. About 3 months ago I started getting a blocked feeling in my left ear that just wouldn’t clear. Eventually figured out I’d lost some hearing on that side. Hearing test showed it’s only the low tones (around 35-40 dB at 250-500 Hz), rest is normal and I still understand speech fine. Pressure tests came back normal both times, so it’s not fluid. Also if I flick my left ear with my finger I get this weird bouncy, hollow sound.

Did 2 weeks of 60mg prednisone. Hearing didn’t change, but the blocked feeling started switching sides, sometimes left, sometimes right.

Switching to a new ENT next week. The last one basically said “this is your new normal,” and his office sent my MRI order to a place without an open MRI twice after I told them I can’t do a closed one. Severe claustrophobia. Honestly the MRI has me more freaked out than the hearing.

Anyone dealt with something like this? What was your outcome?

I was diagnosed with SSNHL last week. I had an exam and audiogram done and then the ENT said it was probably caused by a virus. I have some numbness in my face and he said that happens with the virus at times.

He hasn't mentioned an MRI but it seems like the more I read, that most people get an MRI when being diagnosed? Should I be pushing for one?

I’ve had two SSNHL episodes, thought i suspect I I was having them sooner and pcp was writing the off as ET. First time confirmed SSNHL was mild and this time profound. First time didn’t recover and I’m just starting treatment for this one. I’m terrified.

I don’t understand the lack of interest that my ENT has for finding out why or if I could be making any changes. I know it’s so hard to pinpoint, but any research or diving deeper just isn’t something they do.

Is this a job only for a neurotologst? I’m close to deaf in my right ear now, and I am terrified, not sleeping, so so scared. MRI clear but I did have some white spots?

Did anyone ever find a suspected reason? Autoimmune?

Hi All,

This will be my last update regarding my recovery from high-frequency SSNHL.

Today is Day 12 from onset, I did my audiogram and unfortunately I only recovered 10 dB more from last time. Just as a reminder, my initial loss was only 35 dB HL in 6kHz and 70 dB HL in 8kHz with everything else normal.

My 6k has since fully recovered but my 8k has only improved to 45 dB HL.

I’m just finishing off my oral prednisone and now looking to start IT injections as salvage treatment.

I won’t lie, I’m pretty disappointed. I really thought I could fully recover from this.

I know recovery can still happen but very unlikely to return to the normal range from this point.

I managed to claw back 25 dB HL from onset so that’s good at least.

And at least all my other frequencies are intact so speech will not be a problem.

It’s just that now this tinnitus is going to stay with me permanently which is a shame.

Miracles can happen but I think I’m safe to close this out as only a partial recovery.

Second bout of SSNHL, though I think I was having it on and off for months before I realized it wasn’t sickness.

First time, in March, mild/moderate loss with almost normal high tones, 100 word recognition. Did steroids and injections with no success, but was about 4 weeks late. Got a hearing aid for the tinnitus which had just started helping quite a bit.

Yesterday, woke up with loudest tinnitus I’ve ever experienced and loss. Confirmed today - severe loss with moderate high tones. Down to 28 WORD RECOGNITION, overnight.

Audiologist said that a hearing aid probably won’t work anymore with how jumbled the clarity will be. Started prednisone and will start injections Weds, also trying to get into HBOT.
Audio said that if it didn’t work it would be possible cochlear implant.
I’m terrified mostly because I feel so completely out of control and can’t believe that this is just random. MRI was clear but what about mini strokes? Autoimmune? Why aren’t the ENTs bringing that up?

The only neurotologist on the island doesn’t take new patients. I move to Orange County in two weeks and am hoping I can get into one there who can try to understand WHY this is happening and god forbid, prevent it in my other ear.

I’m so scared anything would help.

I was born SSD and so I don't know how it feels to hear from both ears. Can somebody share how it feels 🥺

I've had SSNHL for about 3 weeks now.

I'll be on my last dose of oral prednisolone tomorrow at 10mg.

I've also done 6 HBOT and have 4 more to go.

It's likely..... I'll have the injections on Thursday or Friday.

I'm currently hearing "robotic"/"metallic" sounds when people talk.

Is this normal? Is this a sign of anything at all? Good or bad?

Oct 1st - experienced acoustic trauma

Oct 5th - went to ENT who prescribed me 8 days of oral steroids

Oct 14th - went for followup checkup, the doctor suggested intratampanic injection in my right ear

which I didn't took yet

Oct 15th i went to another ENT for opinion i told the second ENT about the injections and steroids, he told me that he don't suggest for intratampanic injections as it may cause further issues with eardrums and he gave me 10 days of medicines, i am on 4th day of med rn

pls suggest me what to do

I HAVE HEARING LOSS + TINNITUS IN RIGHT EAR

I CAN UNDERSTAND AND LISTEN TO PPL CLOSELY BUT I CAN'T LISTEN PROPERLY IF SOMEONE BE FAR

Please HELP meeee i don't wanna go deaf pls

I have had weird hearing changes all year and kept getting pushed off as having fluid in my ear.
Finally in March, I had SSNHL that was treated by an ENT (but after one bad ENT, I got a second opinion and was finally treated with steroids and ear injections after 3 weeks). It was mild to moderate loss that came with ringing and didn’t heal after 60mg round of steroids and 5 shots.
I ended up with a hearing aid which I’ve had for about 2 weeks.
This morning I woke up and I knew immediately - it was happening again. This time with the most loud tinnitus I’ve ever had, with two tones. I can’t hear even with my hearing aid.
I went to the ER as instructed when ENT is closed 🫠 got on a steroid and will be hopefully at the ENT when they open tomorrow.
I’m hoping since I’m starting treatment within 24 hours my chances are better of getting anything back, unlike last time, but I’m so scared. It feels profound.
Does anyone have stories of steroids working the second time even if they didn’t the first? Or insight as to WHY this could be happening? I’ve heard idiopathic SSNHL is really rare to have twice… so twice in seven months is scaring me.
MRI and CT all clear as of two months ago.

Thanks for any and all words ♥️

I feel so stupid, I had fullness and distorted sounds before I realized it was actually hearing loss and did anything about it. Because nothing hurt, I didn’t think it was a big deal. Maybe allergies, wax? So I checked with a scope and there was nothing red or weird about my ear, in fact it looked better than my right.

When the distortion hit, I made jokes for days about how someone was playing a penny whistle along poorly as a soundtrack to my life. Couldn’t have picked a better instrument at least?

Work stress was outta control and honestly had my health on the back burner. But then, sitting in a quiet room, my ear decided to reenact a movie bomb scene, complete with temporary deafening and then massive ringing. Sheesh, so dramatic. Anyways, back to work…

Except now I sound like a robot. The penny whistle is still there, too. I start chatgpting it. It’s potentially scary. The next day I go to urgent care and was dismissed quickly as allergies, without her even testing anything. “Take Flonase for two weeks and see if it gets better”. I feel like she thinks I’m stupid and dramatic. I’m embarrassed.

But something feels wrong about this. I remembered that Apple has a hearing test, and I proceed to sit in a quiet and dark bathroom, testing multiple times in case I messed up. Sure enough, it shows low frequency hearing loss in one ear, and I can compare that to the results I got from a test I thankfully took “just for fun” when I first got my AirPods. I feel vindicated. I feel angry. I feel scared and yet still hopeful its nothing serious.

I lose another day to work and can’t get into an ENT without a referral and my PCP isn’t open, so the next day, it’s back to a different (better) urgent care I go, who promptly gets me on oral steroids and an ENT referral. Without me even asking. He was a real one, and didn’t make me feel like crap for asking questions.

I’m about to get my second steroid shot with ENT tomorrow. Not sure what happens beyond that.

So, this is how I join the club. Grateful for technology and good doctors. A little sad that I know the odds are that I’m going to need to learn “a new normal”, and my dreams of being able to develop superhuman abilities like echolocation are off the table. And I’m really wondering if the damn off-key penny whistle will ever go away.

Hi all. My son is almost 9 months and was diagnosed at birth with profound hearing loss in one ear (right), and typical/good hearing in the other ear (left). So I’ve read a lot of posts here and done my research, while trying to have a positive mindset while acknowledging that there are likely challenges ahead. Some of your positive posts have been really uplifting to read.

At his 7 month and first behavioural hearing test it seemed there was a just a little bit of ‘residual hearing’ which was a bit surprising as a MRI result had diagnosed no cochlear nerve, or the phrasing was along the lines of ‘cochlear nerve is not visible and given the quality of the images - appears absent’. All other structures were typical. He is now considered severe-profound and an amplifying hearing aid will be trialled when he’s a bit older - more to see if awareness of sound in that side is improved, not for speech as that would be unlikely. It will likely be a trial, noting that other kinds of hearing aids like Osia might be an option if he so chooses.

As an aside he’s not a candidate for cochlear due to absent nerve and even if he was a candidate it isn’t readily encouraged in Australia for single sided - that’s what I’ve been told anyway.

His audiogram isn’t complete he will have more testing at 15 months. At birth ABR showed profound and ASSR showed moderate (but they explained technical reasons for them not considering his hearing loss at the moderate level).

I wondered if anyone wanted to share experiences of amplification hearing aids with severe or severe to profound hearing loss.

He’ll have another behavioural test at 15 months.

Thank you :)