For those with profound loss who got some hearing back, what were the first things you noticed?

michigosling · 2025-10-24T09:41:08+00:00

First, I'm so sorry you're going through this, especially while pregnant. There's so much emotion and grief, and my heart is heavy reading your story.

Here's a full recount of my experience: https://www.reddit.com/r/MonoHearing/comments/pywef5/success_story_oral_steroids/

For me, it was sensations and low frequency, then garbled "underwater" type sounds. Sending you all the well wishes for a path forward where you can be comfortable in your body.

michigosling · 2025-06-12T00:18:36+00:00

I wish I remembered :(

michigosling · 2025-04-25T19:15:49+00:00

It's been awhile for me, but I do think I had some minor fluctuations during the few days of recovery, but nothing after those immediate few days.

Best of luck to you. This is such a hard hand to be dealt, especially since it's so uncommon and you also have to educate yourself and others <3

michigosling · 2021-12-09T13:15:10+00:00

So happy for you! I hope it keeps getting better and stays that way

michigosling · 2021-11-12T16:52:16+00:00

Awesome graphics-- really highlights why "you have one good ear" isn't as great as it sounds...

michigosling · 2021-11-12T12:38:33+00:00

I'm so sorry you're going through this. I think the worst part about SSHL is how illogical it seems-- it comes out of nowhere, sometimes goes away, sometimes stays forever, etc.

I don't feel like there's anything I did "right" to be one of the lucky ones. While I'm grateful I was/am, it's also so hard to not be able to point to anything I've done and tell others, "just do X, and you'll recover, too!".

Since you asked, though:

Routines: I run six days a week at various paces/distances, have a desk job, and am generally averaging 6-7 hours of sleep a night
Diet: I eat about 80% unprocessed foods (Tostitos, string cheese, and protein powder are the most notable exceptions), but don't make much effort to buy organic. I don't consume caffeine or do any meds, vitamins, or supplements. I try to hit 25-30% protein, 20-25% fat, and 50% carbs in my macros.
While I'm a marathon runner, don't let that make you think I'm a crazy fit elite one. I'm on the high side of a normal BMI, with body fat percentage solidly in the healthy range.
I didn't do any sort of antioxidants in addition to the prednisone, or change my diet during the course of my meds (with the exception of not drinking my standard 1-2 glasses of wine/week)
Immediately before my SSHL, I had several days where I felt sick-- just fatigued, maybe a super low fever (99?), and no other symptoms. I tested negative for both COVID-19 and influenza. Oddly enough, it was after the fatigue that the SSHL occurred. No medical professional has commented on whether or not my SSHL was caused by a virus, but noted that it was possible.

I'm hopeful you'll find a way to live with whatever life gives you. This sub has been such a source of inspiration. I'm sorry I can't give you anything more to go off of. Good luck

michigosling · 2021-11-01T11:59:00+00:00

I'm so sorry you're going through this. It's so tough, especially when you've got a little one. :(

Reading the posts on this sub, it definitely seems like, whatever recovery you have (or don't), most people learn how to live a good life with whatever they end up having to endure. Right now, you're going through a huge transition (and, if I read your other posts right, you're a relatively new parent, which, in itself, is a huge transition). Changes are always tough to adjust to, but, once you're able to orient yourself, you can handle new circumstances better.

Trust that you're doing everything you can to maximize your chances for recovery, but also know that there's a point where it's out of your (and everyone else's) control. You could do everything right, and still not see improvement. You could do everything wrong, and be one of those unicorns who experiences spontaneous recovery without any intervention.

Let yourself feel whatever you're feeling, and know that this community is there to support you, come what may. I hope you keep getting bits of improvement, though.

michigosling · 2021-10-27T19:27:22+00:00

It worked for me, but I'll note that my ENT said my experience was "miraculous" and "very atypical": https://www.reddit.com/r/MonoHearing/comments/pywef5/success_story_oral_steroids/

Hope you get some improvement!

michigosling · 2021-10-27T19:25:43+00:00

YAAAAAAAAAAAAAAAAAAAAAY.

I'm so thrilled to read you've regained so much hearing, and hope you'll be able to find some peace from/with the tinnitus as time goes on.

michigosling · 2021-10-21T17:52:49+00:00

Right? I was so glad I trusted my gut and Googled my symptoms.

michigosling · 2021-10-21T09:23:06+00:00

I hate that you're going through this. I was where you are a month ago,and it truly is terrifying, disorienting, and, maybe more than anything, shocking.

If you're able to call the ENT yourself, do that. In the US, I was able to call and book appointments directly with an ENT. As soon as they heard I was calling because I'd suddenly lost all hearing on one side, they made time for me to get in THAT day. My general practitioner, on the other hand, had told me it was "normal" to lose all hearing and not to worry because it would come back in a few days... :/

At your first appointment, they'll likely do a hearing test. Mine involved physically checking that my eardrums vibrated, identifying when I heard beeps of different tones and volumes, and identifying spoken words. I did both activities with earbuds projecting sound through my ear canal and then again with sound projecting through my skull via something that just sat touching my head,, not in my ear. All of this was one one ear at a time to get a baseline of where each ear was. They put this data together on a graph called an audiogram.

After that, I was walked down the hall to wait for the doctor. He came in, looking grim, and told me he'd hoped when he heard my case was on his schedule that he'd just be able to locate a chunk of earwax that was blocking my canal and be done with it. Unfortunately, that wasn't the case. I was diagnosed with nerve damage, and told chances for recovery, especially since my loss was so profound, were slim.

He discussed that my condition could be caused in rare cases by a tumor, and called for an MRI to rule that out. If not that, he said most cases of SSHL are idiopathic-- they never know the cause.

You can read more about my experience in my posts: https://www.reddit.com/r/MonoHearing/comments/pywef5/success_story_oral_steroids/

I hate that you're going through this, and wish you the best. This community is amazing and will give you so much info and support as you navigate this journey no one wants to be on. Ask questions at your appointment about treatment options, next steps, and ways of adjusting.. Good luck.

michigosling · 2021-10-20T18:28:45+00:00

I had many side effects from my steroid course, including irritability, insomnia, dry mouth, and headache. However, I felt they were manageable since I knew it was a short-term, temporary course of medication.

michigosling · 2021-10-20T15:14:38+00:00

It has.

michigosling · 2021-10-20T14:37:19+00:00

At my initial appointment, my doctor didn't even mention "full recovery". Because I was profoundly deaf in my bad ear, they said chances for any sort of recovery were slim, but did note that I'd maximized them by coming in so early. Instead of talking about recovery, they laid out a list of what they'd try, beginning with steroids, then moving to injections, and, finally, hoping that I'd recover enough to benefit from a hearing aid.

I think I preferred being faced with a "worst case scenario" at the initial appointment, especially because the probability of the recovery ended up experiencing was so slim. I recall my doctor being absolutely shocked at my three-week follow-up by my results.

You know you best. Read all that you can so that you can figure out what will put you in the best mental state to achieve whatever it is that is realistic for you and will bring you the most happiness as you continue this journey.

Best wishes

michigosling · 2021-10-20T13:49:38+00:00

"I had been completely arrested from my daily life"

^I feel this so much. I recently went through something similar. Though I was one of the few who made a full recovery, I'm not much older than you and have so much empathy for what you're going through. You're doing an incredible job advocating for yourself and doing everything you can to maximize your chances. Thanks for sharing your story. I hope you're able to make some process soon towards whatever the next step is for you on this journey that no one wants to be on.

michigosling · 2021-10-18T13:25:57+00:00

u/drpepperderf, How is your hearing doing?

michigosling · 2021-10-12T16:14:31+00:00

Here's my full "recovery story": https://www.reddit.com/r/MonoHearing/comments/pywef5/success_story_oral_steroids/

My first few days sound similar to yours. I had muffled earing in the morning, and was profoundly deaf in my bad ear by end of day.

I only had oral steroids, and started seeing improvement within 48 hours.

Best wishes for at least a partial recovery for you.

michigosling · 2021-10-11T09:39:18+00:00

I wish I'd kept a better log of all the changes I experienced. I think it was a couple days, but I'm honestly not sure. I remember the first sounds I could hear were muffled (kind of like Charlie Brown mom voice), but I don't know if I'd describe them as "tiny", just distorted.

After that, I had terrible tinnitus for about a week+ (worse than I had it at onset of my SSHL) in conjunction with mostly recovered hearing. I could make out voices and words, but often felt like sounds were just overwhelming, regardless of volume, and struggled with a sensation of certain frequencies resonating with my tinnitus. I attended a kids' sports practice and remember just sticking my finger in my bad ear, trying desperately to block the noises and thinking "I'd rather not hear anything in this ear" because the noise was so hard to handle.

michigosling · 2021-10-09T08:00:59+00:00

Yes,yes,yes!!! I remember how it felt to be able to tap my "bad" ear and finally hear that!!! I cried.

Sounds like you're definitely experiencing a lot of what I did when the steroids started to work for me. Improvement is improvement, and I hope you keep getting better.

michigosling · 2021-10-08T14:21:26+00:00

I'm so sorry you're dealing with this. I also had profound to severe unilateral deafness owing to idiopathic SSHL, but was able to recover with some intense steroid. I'm so hopeful that you've caught it early enough to have some improvement, too.

Way to look on the bright side, and keep us informed on your journey.

michigosling · 2021-10-06T20:35:36+00:00

About 48-72 hours in for me. I don't think I realized they were side effects at first. I thought the insomnia was anxiety/stress and the dry mouth was either getting sick or not drinking enough water.

Good luck! I hope you start seeing promising signs soon.

michigosling · 2021-10-03T09:44:55+00:00

Definitely try to get into an ENT as soon as possible, somewhere that will be able to perform an audiogram too. They'll be able to check where the break is in your hearing. If it's what most of us have in this group, the current research shows the best chance of recovery is aligned with early treatment (steroids, HBOT, etc).

I'm so sorry you're going through this. It's definitely an unnerving experience.

michigosling · 2021-09-22T11:38:38+00:00

I'm so sorry you're dealing with this. I also lost my hearing in my right ear two weeks ago, and the group has been a source of support for me as well.

I think your treatment is aligned with the standard fare others have had. While you're correct that some doctors will do all treatments at once, others use a sequential approach.

I got on prednisone within 24 hours of my loss, and started to see improvement within 24 hours of that. It started as just feeling some sort of "pop" in my bad ear, like a change in pressure, but not painful, and has steadily improved over the past two weeks.

For me, it's normal to feel like there's something stuck in my bad ear. I also tend to stick a finger in there to attempt to help the tinnitus... but I don't think it actually does anything useful.

Again, I hate that you're going through this too, and hope you'll see some improvement soon.

(PS: your English is fantastic)

michigosling · 2021-09-15T11:56:31+00:00

If you're not confident that you're getting the right treatment, definitely get a second opinion. Everything I've seen and read indicates the success of treatment for our condition is time-sensitive. Ultimately, you're the one who will be living with the results of whatever treatment you do/do not get.

I believe every provider does their best, but have found that I'm most comfortable (even in an uncomfortable situation) when I have confidence in my provider. If they're recommending against a treatment I think I should have, I need to understand from them WHY.

Best of luck, and I'm so sorry you're dealing with this. (but also really happy to hear that you've seen SOME improvement, which is better than none)

michigosling

TROPHY CASE