SSHL, Labrynthitis? What is wrong with me :(

Hearing Loss
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Hi, Newbie here and just looking for some advice.

Im 34F, 2 weeks ago ( to date ) I woke up with Autophony in my left ear and felt a bit dizzy and wrong shall we say. Every time i spoke it was coming through my ear. Very frustrating if im honest but just thought it would pass. It carried on for 4 days and then I woke up 3am one morning with the loudest roaring tinnitus. That morning i couldn’t hear out of that ear. The Autophony went away but the returned then next day with my hearing weirdly. Every night since then i kept getting really loud ringing in the ear and just knew my inner ear felt inflamed. GP suspected Labrynthitis and said you will recover in a few weeks. I went to A&E because i just couldn’t cope with it much longer and they sent me home with antibiotic drops ( which i knew i didnt have an infection) tried using them and it made my tinnitus 10x worse! Back to GP several days later and they ring through to ENT and they said to prescribe prednisone for 10 days. At this point i had no hearing loss but awful autophony. Took first round of steroids that night and following morning woke up to roaring tinnitus and complete deafness in my left ear. Thought it was strange considering i hadnt really lost any prior apart from that one day.

Im on day 4 of prednisone and hearing havent returned. Got ENT in 7 days. I’m absolutely a broken mess. Im worried its not going to return. Do this sound like SSHL or Labrynthitis? I’m just dumbfounded by what it can be. I know an AN could be possible but the start of my symptoms just seem so strange compared to other SSHL stories. I’m literally feeling suicidle. I dont know if i can live with not being able to hear my own voice and this constant ringing in my ear. It seems so much worse since taking the prednisone.

Sorry long rant but just a rather emotional wreck right now!

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@Neville , @Um_bongo Could one of you reply?
I have no clue, but hopefully one of our audiologists can add something useful.
One thing that concerns me is that it sounds like you had no hearing loss (except for one day) until you started the predinsone? Did you call your physician? Generic medical advice: Doctors make their best guess of what’s going on and suggest a treatment they think will help. Their assumption is that things will improve (unless they tell you otherwise) If things get worse, they expect for you to call them.

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I’m not a doctor and I never heard of labrynthitis before. However, I did suffer SSHD years ago in the better of my two esrd.zI know how you feel, I lived it myself. Because my left ear has some nerve damage, I’m hard of hearing in that ear. I wasn’t wearing my hearing aids that day. When my hearing went, I thought I went deaf in both. A day later I put both hearing aids in, no sound one side, buy my other ear was fine as long as I word the HA. I had vertigo, was dizzy and could not keep any food down.

I just looked up both conditions. With labrynthitis, it’s all dissiness without hearing loss; SSHD is vertigo with hearing loss. Ot sounds by what you are saying is you have SSHD.

Did you have a cold or virus recently? My SSHD came 1 1/2 months after a virus. Forget GP’s and emergency rooms, they are clkueless as to what is going on. The emergency room said it was probably a middle ear in fection that would go away in several days to weeks. I was told to follow up with PCP as soon as possible.

This is common and it is a mistake doctors and emergency rooms mae all the time when one presents with this. It also sounds like you waited before seeing a doctor. You should have gone to one right away. Your doctor sould have referred you to an ENT. When you have problems with your ear, you don’t feel pain or infection, and they din’t see anything in your ear, that is considered an emergency by ENT’s.requiring immediate care.

The reason I say you should see a doctor right away or ian emergency is timing is everything here for the best chance to catch this and restore any hearing loss. The sooner after the onset, the better the chance of regaining some or all your hearing back. You have a two week window to start treating this. I couldn’t get into the ENT associated with my medical group for 2 weekks. After 2 weeks people rarely get their hearing back. The steroids is a proper course of treatment. Another is hyperbaric chamber treatments. It’s not a guarantee, but the sooner after onset you start these treatments you stand a better chance of recovering your hearing. Not trying to be a downer or scare you, but this is what happened to me.

It’s not the end of the world and don’t kill yourself. You didn’t mention if and how elwell you hear with one ear. If the hearing isn’t the best, a hearing aid will be a good start. Yes audi’s and even Costco can sell one hearing aid. Have an evaluation done to see ifvyoubare candidate for a cochlear implant place in your cochlear. That’s what I have and it’s been working great for four years. Go over to the section of the forum named cochlear implant. Don’t give up you can do this!

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Your right, I had one day of hearing loss that returned but didnt have hearing loss again until the day after taking prednisone.

Unfortunately my GP wont do anything else for me until I see ENT on the 30th Jan.

I am UK based, its been absolutely stressful just trying to see an ENT.
I am under an ENT consultant and have been since i was 12. I had a cyst in the ear drum that burst and ruptured all my ear bones and they fused together so hearing was around 40%. This is the same ear im having a problem with ( thankfully) although i didnt have much hearing in there to begin with is stressful that I cant hear anything but tinnitus!

I did have covid 2 weeks prior to ear issue so GP assumed Labrynthitis.

Anyway… i rang my ENT secretary directly and asked for an emergency appointment and the earliest he could see me was end of Feb. I rang around private clinics and earliest i could get was 1st Feb. When I went back to GP with hearing loss they rang ENT ( dont know why they didnt do this first time ) who prescribed prednisone and arranged an appointment for the 30th Jan.

Its been an absolute ball ache. I was willing to pay anything just to be seen within a few days!

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It sounds like sudden sensorineural loss as suggested in the above post.

The advice is right too, get an emergency referral to ENT (VIA A&E in the U.K.) and you’ll usually be admitted directly to the ENT ward, see the SHO who’ll get the ENT consultant off his golf course or just ask advice and hit you with the super Predisnalone(?) dose if it’s appropriate.

The timeline is definitely an issue: as indicated above early intervention is critical.

The vertigo and associated hearing issues are thought to come from the potential endolymph/perilymph fistula (leakage) where the hair cells get exposed to the air from the middle ear and decay very quickly. The steroid intervention is to promote the healing of the damage and quickly refill the cochlea with the appropriate fluids.

Don’t assume you’ve got a bunged ear from a virus, any Asymmetrical loss is worth checking. If you suspect it’s happening to you, get to an Audiologist, we can quickly check to see if it’s a basic ‘middle ear issue’ or a proper Sensorineural change.

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Thanks both. I’m on steroids currently… 50mg for 5 days and then a taper for 5 days. Started these day before hearing loss due to my unusual symptoms.

They wont see me until the 30th jan when treatment ends!

How long is it until some people see improvement? Im assuming with no progress in 5 days im likely out. Especially with Tinnitus still roaring.

Im gutted that I don’t even have a small bit of hearing for a basic hearing aid.

Ive got 2 young girls and its absolutely killing me! I can’t shake the feeling of doom.

I know there is worse conditions but you never really realise how fortunate you are to have hearing!

Sorry im extremely miserable here.

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It’s difficult to actually know what/if/when the fix is going to be without knowing the extent of the underlying damage. Unfortunately it’s a waiting game.

They can go either way; I’ve got a 37 year old father on my books with a permanent flat 70dB Sensorineural loss after a bout of covid picked up prior to Christmas ‘22. Came in later January, but it was too late.

Another lady, existing wearer, came in with a complaint that her aid was faulty after ‘it’ going quiet over the weekend, but I retested her and she had an additional SSNL. She’s recovered about 90% of the subsequent loss.

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How long did it take for her to recover that 90% loss can i ask?

Im a bit worried I missed the window by not having treatment when i first noticed symptoms wasnt right with my ear even though i had no hearing loss at that current time.

I did take it day prior to losing it!

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Can i also ask, is the Tinnitus temporary? Will it go once the hearing is damaged?

The Tinnitus is so bad and just makes it overall worse.

And would taking magnesium help at all?!

Sorry for all the questions. Just completely and utter gutted about the whole situation!

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Don’t worry about this. You went on steroids within the first two weeks as you should have. We don’t even have strong evidence that steroid treatment does anything–it is a Hail Mary. You’ve done the correct things that you needed to do, and now it’s a bit of a waiting game. Fluctuating loss at the beginning followed by a sudden drop with tinnitus is a very classic presentation of idiopathic sudden sensorineural hearing loss, and you took more action sooner than a lot of people take.

We don’t have strong statistics on how many people recover their hearing and who it is likely to be, so say 50:50 chance that some or all of your hearing comes back within the next 3 months. You are correct that the longer you go without improvement the more likely it is that you will not have full recovery. So then your options would be partial recovery with a hearing aid, insufficient hearing aid benefit which would make you a possible cochlear implant candidate, or no possible support for that ear for various reasons in which case you would be relying on one ear and there would still be strategies and technological supports for hearing and an audiologist would walk you through all of it. There’s some evidence that moving ahead with amplification quickly after a sudden loss is better for recovering speech clarity than waiting a long time, so after a few months if your hearing has not returned, don’t wait to see someone–you can probably start looking into finding a good audiologist right now. It’s going to be a bit of a journey.

The tinnitus in all likelihood will at least calm down substantially even if the hearing doesn’t recover, but it will probably take much longer for this to happen than you would prefer and unfortunately the more you focus on it and worry about it, the longer this can take. So try to put strategies into place right now to help you keep your mind off of it–enrich your sound environment, turn on music that you like, find ways to relax, and keep in mind that in the long run it will calm down. An audiologist can also help you to manage the tinnitus.

You’re going to be okay. That said, it is also completely normal to grieve. This is a big change to your life, sometimes made harder by the fact that no one around you can see it or understand how much it has impacted you. If you need professional support to manage the emotional fall-out, do not feel ashamed about that. It’s not “just” an ear. No one would think you were crazy for seeking support after losing an eye, or an arm, or a leg. You ARE going to be fine if the hearing doesn’t come back, but it IS a big deal.

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@Sophs50522 I’ve been hard of hearing my whole life so I cannot claim to entirely understand your feeling of loss but I can tell you that life is worth living and still rich with connections and love whatever your hearing may be.

Definitely be honest with your kids so they know you aren’t ignoring them if you don’t hear them. If you do not regain all your hearing after the therapy is done you will need to have a full talk with them so that they have the right expectations when communicating with you.

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Like Neville says, the efficacy of the steroid dose is a ‘Hail Mary’: sometimes they come off.

I believe recovery for the lady who it worked for, was 4-8weeks: and included an improvement with the tinnitus.

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Thanks all for the advice! Im literally waking up every day hoping it returns considering thats all i can do.

Ive suffered really bad health anxiety since i was around 25 and it’s practically ruined my life so you can imagine how ive taken this!

I think dealing with the loss would get better over time but the worry of losing it again in my only good ear is actually petrifying!

I can hear ok just feels like ive lost my surround system. Its such a weird feeling.

This truly is a disability in itself and its disheartening that no one knows really how to treat it.
Its crushing me, im getting married in 3 months and i feel its put a huge spanner in the works.

Im making my partner miserable by being miserable!

Sorry to be such a downer. i feel venting here is all i can do right now other than crying!

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This is also something that a good therapist should be able to help you with. Seems worthwhile to invest in that now–as we all age health scares are nearly inevitable.

Having a sudden hearing loss in the other ear later is tremendously unlikely.

The impacts of hearing loss in one ear tend to be sound localization and hearing in noise, some impact on distance hearing too. Hearing in quiet is usually okay.

Congratulations on your wedding.

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Due to a significant injury (TBI), I have had constant tinnitus in my left ear since 1997 and it comes and goes in my right ear. I also lost a good bit of hearing in my left ear at that time. I lived with unbalanced hearing until 2014 when I got my first HAs.

It took a while, but I find that if I think about the tinnitus (like even reading about it in this post), I hear it and when I am just going about my life, it is there, but just part of the background. I had other issues that were more pressing in the period immediately after the injury, so unbalanced hearing and tinnitus were lower tier issues and by the time I had recovered from the more significant issues (about 6 months), I was had gotten used to the new state in the hearing department.

Getting HAs helped my hearing - both balance and volume, but did nothing about the tinnitus. Hopefully your tinnitus will resolve, or at least abate. Speaking with 26 years experience, I can tell you that even with a disability, life is well worth living. We have had many blessings, including kids and grandkids in that time. Look forward to your future blessings with your soon to be husband and possible kids. Working through your current frustrations is definitely worth it.

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Thanks for the advice. Really appreciate it! I think the tinnitus is what im struggling with the most.
Its waking me up at night, i thought the steroids would have kicked in by now.

Hearing still isn’t better and im on day 6 of hearing loss. Im fearful that the longer the ringing continues the longer my ear is inflammed and damage is still happening.

Probably first time in my life yesterday I was highly committed to suicide but every time i looked at my children I broke down.

How long do the ear stay inflamed for does anyone know ?

I used to be able to swallow and my ear would pop but it doesnt even do that. I feel like its chronically inflamed and it just wont settle!!

I actualy cant believe all this is happening to me! I feel so alone right now

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Id be happy just to gain atleast 20% just so i can wear a standard HA.

I feel for anyone who’s experienced this. Its really traumatic!

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Hello @Sophs50522, welcome to the forum, been reading your post, and I can very much empathise with your current situation… It takes me back, to a time when I caught a viral flu, both ears went down, severe/profound threshold, horrendous tinnitus, it is the only time that I ever had an apology from the medical profession, my Doctor apologised for not giving me a steroid injection, when I returned to see him a couple of weeks after my first initial appointment, he didn’t realise it was a virus, and gave me a decongestant! Suffice to say, the damage was done… It might not have made any difference, as one of the A.uD’s said, it’s really a Hail Mary, and probably a 50-50 chance of regaining, all or some of your hearing back in the effected ear/ears…They don’t really know what causes Tinnitus, they know it can be caused with SSNHL (Sudden Sensory Neural Hearing Loss) some of the medical profession, believe with the absence of sound, the brain recreates it’s own sound, unfortunately it is nothing to do with inflammation, I believe the sound you hear, is some form of reaction from your brain, but in truth, the don’t actually know, the exact root cause! I am sorry to inform you, once you have Tinnitus, you usually have it for life, but the good news is, it will be variable, stress, anxiety, certain medications, depression, sometimes poor health, can and do crank it up several decibels, stress & anxiety have a severe detrimental overall effect on Tinnitus, perhaps the main culprits for extremely loud Tinnitus… Personally, I taught myself to relax when Tinnitus goes off the scale, and within 20 minutes or half an hour, it has gone down to barely audible, so nowadays I am totally relaxed about it, I know I can switch it off, in a reasonable timeframe, being philosophical about Tinnitus is key, excepting it as part of you, is another key, the third key, is relaxation… So there is hope, and hope is always a good thing… You know of course, I might bite someone’s hand off, if I was offered one good ear, instead of 2 bad ears, there is always someone worse off than yourself, at one time I worked with duel sensory losses, folks whom where, Blind & Deaf, they would put us all to shame, full of life, and full of fun, when ever I thought “Woe is me”, then I thought of these clients, and my troubles paled into insignificance… A few short years after SSNHL, like a bolt out the blue, I was hit with MD (Meniers Disease) just around when I was coming to terms with my hearing loss, I was hit with that affliction, basically, cluster attacks for around 8 years, vertigo, rampant tinnitus, fullness of ear, extremely poor balance, visual distortion, hearing distortion, extreme nausea, chronic fatigue, MD destroys your vestibular, basically your balance organ, and every attack is gradually eroding away what little residual hearing you have left, it’s incurable… Eventually the vertigo burns itself out, and you have a poor balance system, but you just survived 8 years of living hell, and you are now very deaf… That is what we humans do best, we survive, when life knocks us for six, we pick ourselves up, dust ourselves down, and we go again!!! My Social Worker, did a brilliant job on me, at the time, I didn’t realise she was manoeuvring me towards self help/self healing, by encouraging me to learn sign language, lip reading classes, I felt less isolated, and more comfortable in my self, I wasn’t alone, I gradually came out of my reclusive self, and basically learned how to live again, albeit was a different me, I had to live with :smile: Nowadays, I am absolutely fine, my balance isn’t great, especially in the dark, I’m fairly deaf, but so be it, I have excellent hearing aids, and nearly every Roger device, I hear well with Roger :joy: Eventually I was able to work again, first with deaf services (A Social Work Initiative) then Criminal Justice took me on as a supervisor, and I worked there till I retired… Chin up @Sophs50522 you have 2 beautiful kids, a future husband, there is much to look forward too…Sending you and your family a virtual hug :heart: Kev x

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I also had a sudden additional loss in my teens and that is when my tinnitus gor very bad. It wasn’t waking me up at night but it would sometimes turn on like a siren and not stop, it was maddening! Like @kevels55 I learned how to bring the volume down with time, calming and meditation routines at first and now it is almost second nature to calm it down when it flares up.

Once your ears have settled you may find the tinnitus gets much better or goes away, you are still in the acute phase and should not assume anything yet. Once there is no more inflammation and no new changes are happening you will have a better picture of what your next steps will be.

Hearing loss and especially sudden hearing loss, is life changing but it’s not life ending. If you do turn out to have ongoing hearing loss and tinnitus after this you may want to consider a therapist to help you get through the initial stages of grief and adjustment mentally.

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I had a SSHL in my R ear possibly 7-8 years ago. No one told me it was an emergency situation to be seen by ENT asap. I got tinnitus with it as well. The SSHL left me with severe profound ski slope loss. Hearing aids didn’t help me at all. 3 years after the SSHL I had a Cochlear implant insertion. Since the surgery I’ve had 2 more very small SSHL. With every SSHL I’ve had I’ve developed another tinnitus sound in my right ear. That’s 3 different tinnitus sounds in my R ear. Yes it’s very annoying, but I concentrate doing on other things and I manage to ignore the unwanted noise in my R ear.
Good luck to you.

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