SSNHL with Sound Distortion / Crackling - Why??

Hi Tom and welcome. I'm tagging a few fellow members like @mikepa @tonyinmi @sjd324 @joyces @judysmayo @joangela @bobbyboomer who have shared in these discussions about Sudden sensorineural hearing loss (SSNHL). I'm confident they will have some thoughts and questions for you.

- Help: Sudden Sensorineural Hearing Loss (SSHL) - very scary https://connect.mayoclinic.org/discussion/help-sshl-very-scary/
– Sudden Hearing loss–options after steroids are ineffective? https://connect.mayoclinic.org/discussion/sudden-hearing-loss-options-after-steriods-are-ineffective/

How long have you experienced tinnitus before the sudden hearing loss?

I have no suggestions for the phenomenon you are reporting but wanted to commiserate about the doctors having no clue and being dismissive. I also had sudden loss in my left ear nearly 2 years ago that brought with it an occasional dripping sound deep in that left ear. But the ear was dry. We did a spinal tap to test the spinal fluid pressure in case I had intracranial hypertension, but fluid pressure was completely normal. They tested in various ways for a tegman bone defect, which would have allowed passage of brain fluid into ear, but nope. So after a thorough round of testing I've more or less been told to learn to live with it. All the medical boxes have been checked. So I try not to be depressed when I hear the dripping sound, though I know it's not right, and I shouldn't have it.

BTW, although I have had the same kind of sudden hearing loss experience you describe, I didn't know what you meant by SSNHL (and I still don't know what "6K" means) in your post. Perhaps consider fully spelling out what you are talking about for those of us less versed in the jargon. Thanks for posting.

The exactly same thing happened to me in Jan/2019. It wasn't my first episode (as I like to refer to them). The first happened in 2015. And like so many people have experienced, ENTs' ignorance of this condition is appalling. Some information (if you can find it when you need it most) indicates there is a window of opportunity to treat the SSNHL (within 3 or so days?), but when doctors are dismissive of the this frightening situation, we are at a disadvantage right off the block. After my first episode, in 2015, I was seen by an ENT who did prescribe a series of steroids. I recovered maybe 70% of my hearing. I considered hearing aides but I was just on the edge of needing them. But in 2019, the loss was horrible: Tinnitus in the absence of sound. And like you, there was a loud electronic screeching type of noise that distorted any sound. Lots of pressure. I know now that it was my left ear most affected. But it seemed like it was both because the deafness was so profound.... or so it seemed at the time. I was treated by low does steroids by my GP. An ENT prescribed a stronger steroid a few days later. And a few days after that, an oto-neurologist had an MRI ran (no physical explanations) and then cut the left ear drum and put a steroid behind it. I have lost about 60% of my hearing and have been wearing hearing aids for about a year. It's not natural hearing, but it helps. But, for me and I hope it will not be the same for you, the remaining distortion of sound in my left ear is the condition that makes understanding speech most difficult. The extreme pressure and tinnitus (lessened by wearing the hearing aids) and the electronic screeching were not permanent, but the sound distortion (to a lesser degree as when it first happened) is still a problem. I will watch the posts for your updates. I wish you well. If you learn of something that helps you, please share it.

I have not experienced what you are talking about. I experience a rattling sound in my left ear. I hear it when I shake my head or if the windows in the car are open or if I step too hard on the floor. Weird. My doctor didn't seem to know anything about it. Sorry I can't help you with your situation.

Hi, Tom. I actually experienced the exact same thing AND at around the same time as you. I described it as "almost an echo".
By now, I'm hoping that distortion has subsided for you, as it has - for the most part - for me. Though I'm told I'll never recover the hearing I've lost (about 30%), the weird echoing has definitely decreased. Now it only happens with really loud noises, usually higher pitched. And the tinnitus is still there, but I am learning to live with it and almost ignore it sometimes.
I'm wondering is there anything they're attributing this to? Have you had any other testing done? Do you have any issues with balance and/or vertigo?
My docs were a bit nonchalant about this for my liking as well. It's a scary thing to experience, especially since there are ZERO outwardly noticable "symptoms"... it was almost like some were skeptical that I was ACTUALLY experiencing what I was saying.
Such a strange thing... I don't know about you, but it kind of helps to know that there are others dealing with it, too. Obviously not that I'd wish it on anyone, but for the simple fact that it makes me feel less like I'm crazy.

Yes, you're describing recruitment where loud sounds can be actually hurtful. Distortion is much harder to pin down, or describe, but it's a far greater problem. Again, if you can get MD under control, you'll be able to hear much better. And, yes, you do get so used to tinnitus that you don't even think about it most of the time...eventually.

MD is a dreadful disease! Yes, it does make you crazy because you're hearing strange things and have imbalance. You may constantly fear that people want to knock you down, even though you know that's not true. There's no real way to diagnose MD, other than eliminating something like an acoustic neuroma by having an MRI. There's no magic, like a doc looking at the Xray of your broken bone and knowing exactly what to do to fix it. Your recovery is entirely up to you, your willingness to do daily VRT.

I don't know what MD refers to ! ? Although I don't have the condition under discussion, I am so impressed with what seems to be very helpful knowledge and the perspective you have provided here!

MD is the acronym for Meniere's Disease...avoids typing a difficult word plus an apostrophe. Personally, I think of it as "Manure's Disease" because it can totally ruin your life if you allow the monster to do that! I think of getting better as stuffing the damned Meniere's Monster into the closet and nailing it shut!

LOL about your comment here! Immediately after asking what MD stood for, MD, spelled out reared its ugly head n another group dialog!

Hey Tom, I have similar distortion. I lost all hearing in my left ear in 2006. My right ear was perfectly fine until an attack in 2015, which left me with some hearing--but it's all distorted. I describe mine as like you're listening to a stereo, but the speakers are blown. Or, like setting the tuner between two radio stations. You can hear that someone's talking, and you can catch a word or two, but most of it is incomprehensible because of the distortion. You said that "talking to someone on speaker phone outside will almost always sound distorted, but inside they sound fine." I don't have that much variation. Nobody sounds fine, inside or out.

My experience has been that doctors (and I have seen dozens at this point), both ENTs and neurotologists, tend to lump most sound phenomena into tinnitus, or something "tinnitus related," with the exception of hyperacusis, recruitment, and diplacusis.

I use a lot of tech to deal with the issue--innocaption or captel to make phone calls to friends/family, sprint tty to make phone calls where there will be an automated system on the other end, Google Meet for video calls (Zoom doesn't have captioning unless the initiator pays extra to have it there, but Meet has captioning), otter.ai or Google Live Transcribe for having a live conversation with someone. Sounds like you still have hearing in your right ear, so hopefully you won't need any of that.

By the way, that weird echoing that missniki621 talked about might be diplacusis echoica.