Sudden Sensorineural Hearing Loss (SSHL)

[PointBreeze]

This has had a very large impact on my quality of life and I wanted all of you to know about it, as PCPs often don't understand the urgency.

I woke up on the morning of 12/23 with a significant loss of hearing in one ear - all the lower frequencies were just about gone. In addition, I had a constant loud whooshing static noise in that ear (tinnitus) and my head on that side felt full in a very disconcerting way.

I knew I wasn't sick/didn't have a sinus infection (and I took an at home Covid test to be sure it wasn't that), so I did a bit of research, realized that this was an emergency requiring immediate treatment (steroids). I called my PCP's office, and it took them all day to get back to me (last day open before holiday and COVID is surging here, like everywhere else). They told me to come in on Monday. I didn't go to an UrgiCare or an ER because the Covid numbers are super high here causing those locations to be overwhelmed (super long wait times and superspreading places).

On Monday (12/27) PCP confirmed I didn't have an infection and told me that if hearing didn't improve within a week to call an ENT. I told them this was an emergency and needed immediate treatment, but they didn't agree. I went ahead and got the first ENT appt I could get, which was on 12/29.

ENT had an audiologist do a hearing test and confirmed that I had classic Sudden Sensorineural Hearing Loss (SSHL). Put me on prednisone, 60mg titrating down to 10mg over the course of 12 days. I will then have another hearing test. If no improvement, steroid shots through the ear drum, once/week for up to 3 weeks.

This has had a huge impact on my life. I have a very hard time echolocating (figuring out where a sound is coming from) now. For example, when my cell phone rings, I have a hard time finding it. I constantly think there is water running/dishwasher going/washing machine going. The loud whoosing static noise is incredibly distracting and fatiguing. It is very hard to concentrate. Watching TV or participating in a Zoom quickly becomes fatiguing and annoying.

I am fortunate that I didn't loss the upper frequencies, so I can still hear most conversation. But I am concerned about not being able to hear traffic noises when walking outside, hearing people and wildlife approaching when walking in nature, working with power tools (hearing the RPMs change when a tool is struggling is key for safety), etc.

After 6 days of steroids, I have had no improvement, which from what I read does not bode well for any type of meaningful recovery.

I know there are many people on this forum that have severe hearing loss, and I have a new appreciation and empathy with all of you.

I am having to work hard to not get depressed. Waking up one morning with such a large change in ability has been a challenge to take in. The steroids are causing insomnia, so that is contributing to my lack of resiliency, I'm sure.

Anyway, I wanted you all to know about this, so if it happens to you, you call an ENT doc ASAP.

 

[captain3d]

Sorry to read that but thanks for the info. Having had a very tiny tinitus change recently I am aware of how this might feel.

 

[Peter]

Anyway, I wanted you all to know about this, so if it happens to you, you call an ENT doc ASAP.

Yes!

And don't let the ENT office admin send you off for a hearing test, which is what happened to me. By the time I'd had the test, and got in to the ENT doc, it was too late for the prednisone to be effective.

Fortunately it's not really affecting me too badly, for which I'm very grateful.

PB, I hope the shots help you out.

 

[tfudtuckerpucker]

I posted about my experiences with this a few months ago. Sorry to hear it has happened to you also. It's been 3 months for me now. I also found that Dr Google was better informed than the urgent care physician, who thought it was just a cold. After going to an ENT, I began prednisone (oral). This was about 10 days from onset. This also caused insomnia, and DW told me I had "roid rage", despite my attempts to control that. But the side effects were temporary.

At first, I lost high frequencies (over about 3khz), and voices were very muted and sounded like robots. Combine that with lots of tinnitus (squealing, trickling water). During the first 3 week round of prednisone, I slowly recovered some hearing. ENT put me on a second course, but I don't think it helped much. The level is now about 1/3 of the other ear. I can hear muffled, distorted voices (and understand about 1/2).

It was pretty alarming at first, since you're always aware of the hearing loss- especially if combined with tinnitus. The good news is the brain is a marvelous thing, and helps adapt to such things. There now are times I don't notice a problem. Sometimes when there is a lot of extraneous noise in a room, it converts to a bizarre racket in my left ear, so I'll sneak in an ear plug. This helps a lot.

The next step for me is in 6 months, when we'll re-assess any progress, and maybe look at a hearing aid.

 

[anethum]

I second your recommendation to seek treatment with an ENT ASAP. I had near complete sudden hearing loss in one ear which began within hours of getting my 1st Shingrix vaccine shot. I had the vaccine around 5pm on a Friday evening. Saturday morning, I woke up with degraded hearing in one ear, pressure in that ear, and tinnitus. It worsened on Sunday, and on Monday I woke up completely deaf in that ear.

I was fortunate that I was able to find an ENT who could see me that same morning and I began to take several prescription and OTC drugs that same afternoon, most importantly Prednisone. My hearing began to return 2 days later. I saw an audiologist after completing the course of Prednisone and my hearing was very good and equivalent in both ears. My tinnitus, however, is permanent.

Because of the timing, my PCP felt certain my sudden hearing loss was due to Shingrix, as were 2 physician friends of mine. All were adamant that I not get the 2nd dose of Shingrix, which of course, I did not get. BTW, the same day I saw the ENT, one of the physician friends of mine in another state, while not an ENT, kindly researched the recommended treatment for sudden hearing loss and told me that the ENT appeared to be handling my case properly. This all happened less than a year before the arrival of Covid.

Good luck, and I hope you soon get some improvement.

 

[daylatedollarshort]

Nutrition testing might help, won't hurt. Almost any nutrient deficiency can contribute to hearing loss - Association of Nutritional Factors with Hearing Loss (nih.gov)..Sudden hearing loss may be linked with iron deficiency anemia - Sudden Sensorineural Hearing Loss Associated With Iron-Deficiency Anemia: A Population-Based Study | Cardiology | JAMA Otolaryngology–Head & Neck Surgery | JAMA Network.

Pubmed is filled with studies on hearing loss, tinnitus and nutrition. In my experience with a friend with SSHL, conventional medical doctors test for 0% of these nutritional conditions. I suggested the friend with SSHL might want to get some nutritional and biomarker blood work done, and they ended up being anemic along with having a bunch of other nutrition and hormone problems.

A functional medicine doctor can help with this kind of testing, or you can order a lot of these kinds of tests yourself these days from places like walkinlabs.

 

[pacergal]

Op--
So sorry you are going through this. I hope you continue to improve daily.
Thank you for the information to seek help ASAP if it happens.

 

[Pineapple13]

I too had idiopathic hearing loss over 10 years ago. I woke up deaf in one ear, dizzy, and had to crawl to the bathroom to get sick from vertigo. I was put on steroids but my ENT told me that the use of steroids is common but hasn't been studied (i.e. not evidence based practice) so they may not help anyway. He said that in his experience about 1/3 regain all hearing, 1/3 regain some, and 1/3 (like me) regain none regardless of treatment. He also said that it almost never happens in both ears. I spent a few months retraining my brain to eliminate the dizziness and learn to walk again without feeling like I was on the deck of a rocking boat. But I have coped and am living a normal life. I position myself at work or in social situations so that people are on my "good side." I got hearing aids that transmit sounds from my deaf side to my good ear (they are good for work or small social settings but too noisy for crowds). No, I can't tell where sounds are coming from (I turn in circles when someone calls my name or to try to figure out where my phone is ringing) but overall, my life is not affected much. Give yourself some time to grieve the loss but I hope you will take heart knowing that you still can live a pretty normal life. Please let me know if you have any questions that I might be able to help answer. You're not alone in this. Take care and be well. Wishing you the best.

 

[GrayHare]

Some of those symptoms are found with Meniere's disease, so you might read a bit about that to see if it fits what you are experiencing.

 

[Pellice]

I have had a major one-sided hearing loss (due to Meniere's syndrom, now "died out") most of my adult life. You do get used to it, but the cell phone thing is particularly annoying. I absolutely cannot hear where it's coming from, even when it's quite close. I generally keep it in one place when I'm home. I do worry about traffic noise, but seem to deal with it. More serious, to me, is the effect on my birding. I hear birds well, but cannot locate them easily, without moving around. I recently had a detailed audiology examination. Standard hearing aids will not help.

Anyway, bottom line is that you do get used to one-sided hearing. And - protect that hearing in your good ear!! No earbuds, no earphones, avoid loud noises on that side. Good luck, and I hope your hearing returns!

 

[Sunset]

OP - Thanks for the PSA about Sudden Hearing Loss, until 2 years ago I never knew it even existed.
My sister got it and went deaf due in part to the delay in seeking treatment.

Wish you the best with your case.

 

[Bobloblaw]

I've experienced this over the last year and I can report that I am very fortunate that I fully recovered.

First experience was about a year ago- feeling of fullness, hearing loss, and tinnitus in the right ear. Oral steroids made a big improvement- tinnitus calmed down after a few days, low frequency mostly recovered, but still some high frequency losses.

Went through the three steroid injections through the eardrum with no further improvement.

3 months later, acted up again. Oral steroids got me back to baseline "bad" with recovery of low frequencies. ENT called it atypical Meniere's disease since I fortunately had no vertigo. Recommended CATS diet: I went cold turkey on the Caffeine (ugh), slightly reduced my Alcohol, never used Tobacco, and reduced my Salt intake. I also started taking a prescription water pill to help with the fluid balance in my inner ear.

All was well for 6 months until October 2021, where it started up again. Oral steroids only helped the tinnitus but not the loss significantly so did 3 more eardrum injections. I just had my hearing checked January 3rd and it is back to normal! Right ear matches the left ear with normal age-related hearing loss. Audiologist said it was my best ever screen.

I've also tested myself with a phone app and with my own "self-tests" and I'm elated. I don't know what's triggered it, but I'm thankful it's very likely not Meniere's disease since that almost always progressives. Improvement is rare.

My wife went through this about 4 years ago and waited too long to see the ENT. Lost almost 100% of her left ear hearing. So, take SSHL very seriously.

But, I can report that the outcome can be positive!

(hint- if they give you the injections, take along some altoids or gum. You get a nasty taste for about 15 minutes!)

 

[Bob_Walter]

You might want to try NAC.

 

[PointBreeze]

OP here. Thanks, everyone, for your helpful and supportive posts!

I found a Facebook group for folks with SSHL and that has also been helpful.

10 days into the oral steroids. The tinnitus has changed. Still ever present but not as distracting. Tinnitus volume and hearing loss improves every evening, but every morning when I wake up they are bad again.

I’ve done a lot of research and have started taking a high quality sublingual B12 supplement and will start taking gingko biloba when the package arrives from Amazon on Monday. I tried gingko biloba years ago and didn’t tolerate it well (headaches), so fingers crossed on that one. I’m also meeting with an acupuncturist in our health system’s Integrative Medicine practice on Monday. Also on Monday I have a repeat hearing test and will probably get the first steroid shot through the ear drum.

BTW, the first week of the oral steroids were very hard for me. Severe insomnia and depression. That lifted magically a couple of days okay, thank goodness.