Sudden unilateral hearing loss, age 36.

[summerlovingvibes]

I guess I'm posting in hopes that someone out there can give me a glimmer of hope.

Just over a week ago I had sudden total hearing loss in my left ear. Within minutes everything went silent, horrendous tinnitus followed by a week now of nothing. The occasional humming but no sound.

I was treated quickly and have since gone private for tests , consistent review and am awaiting an MRI then follow up.

From what I've been told & read, it can be a few reasons but most likely a virus that has attacked my hearing nerve. Hoping it's nothing more sinister (MRI will rule out). Treatment quickly is imperative to hope to re-gain some hearing, although it's a pretty small percentage that do re-gain hearing.

I've got a toddler and 3 month old at home, and am massively struggling. I can't hear them if they're both talking/crying, and when I can hear them I can't always tell who it is or where they are. My good ear is picking up all sounds but they are displaced and the sound doesn't come from the direction it was made in. It's hard outside because any passing traffic or gentle wind or background noise drowns out everything else. My brain is playing tricks on me with sounds coming from different directions and nothing sounds the same. People sound different, tones of voice sound different. I can't stand listening to the tele or the radio. So distracting! At night I hear noises I just know aren't possible. I can't sleep on my good ear side because I'm scared of not hearing the children cry. I'm sociable, but at the moment can't stand being around people incase they want to talk. Phone conversations are a bugger.

I have a very supportive and caring husband and family, but really I'm wanting to hear from others that have experienced this and can understand. And hopefully give me an amazing story where your hearing returned a few weeks later?

By the way my hearing nerve is completely dead so doesn’t work at all.

Happened to my husband in 2015. Same conclusion after all tests/MRI - i.e that it was "a virus" that caused it. He suffered rapid total loss in the effected ear and his hearing never came back BUT if that happens to you, do not give up hope and assume that the nerve is dead.

DH was fortunate that rules changed in 2019 that meant that he qualified for a cochlear implant (we're not in the UK) even though his hearing in his good ear is perfectly fine. If the nerve had been destroyed, that procedure wouldn't have worked on him, but it was a total success. Clearly whatever caused his sudden single sided hearing loss had damaged the hair cells within the cochlear, not the nerve.

Meant to write that the rules changed in 2019, but there was a lengthy assessment process and then a waiting list so he only got his CI surgery in early 2022.

I also meant to add that once the rules changed to allow people with unilateral hearing loss to qualify, there were between 10-12 cochlear implants allocated to single-sided hearing loss patients per year by his surgeon/hospital.

So that means that before DH's turn, there were at least 20 CI surgeries that had been performed on people with single sided deafness by his surgeon. Every one of them was successful. Not a single one of those people who had suffered idiopathic SSHL and had told by their audiologists that "most likely, a virus has destroyed the nerve" could actually have had a dead nerve! 😮

I'm not saying it's not possible for that to happen - I'm sure can - but it's nowhere near as common as most online articles about sudden single sided deafness would have you think...

I have menière’s which causes fluctuating hearing loss, tinnitus, a feeling of fullness in the affected ear and acutely attacks by of vertigo at times. The hearing can go very quickly from being not too bad to virtually no hearing at all within the space of a couple of hours. I’m lucky in that so far the hearing I’m my right ear has always come back eventually - although it can take months. You do get more used to it after a while - I find the tinnitus is worse at night so quite often go to sleep with headphones and listen to a podcast. I struggle with direction of sounds and noisy environments - I’ve had to get quite grumpy with colleagues at times to remind them not to talk over each other in meetings as that quickly becomes an indecipherable cacophony - people forget very easily as hearing loss is invisible so you do have to be your own advocate a lot of the time

@HalleLouja
Would you be able to share a link to some information about the blue tooth hearing aids? I've been deaf in one ear since I was a child too and am interested to hear that you find these useful. Thanks!

@BlueRaincoat1

Butting in (sorry!) because my DH used this company's version of a crossover hearing aid system and he was quite impressed with how much more he could hear in noisy environments, but like HalleLouja said, it doesn't help you tell where sounds are coming from:

www.phonak.com/en-uk/hearing-devices/hearing-aids/cros-paradise

Actually, his was an in the ear version but I don't see it on the UK site: supportapp.phonak.com/us/en/hearing-aids/phonak-cros-II.html

Sometimes a virus can cause glue ear, which can cause the sort of hearing loss that you are experiencing but clears up by itself within a few weeks. Hopefully your loss is because of something minor and you are soon much better.

This happened to DH when he was 45 but we can’t think of anything that might have led to it.

Then it happened to my friend (similar age) shortly after she ran her first marathon.

Both left ears.

I think it’s surprisingly common.

Good luck 💐

Different situation but hopefully still relevant. When I was 25 I got an eye infection and lost most of the sight in one eye ( I can make out shapes and colours but that’s it). To start with it was v difficult. I had to shut that eye or I couldn’t see properly as the right side was all blurry and it messed up my depth & distance perception- I kept tripping down steps etc. or I’d reach to pick something up and miss it. Words sort of swam on the page. After a few months my brain adjusted. Within a year my vision was basically normal despite being almost blind in one eye because my brain has just learned to fill in the blanks.

I feel for you as at the time it was very scary and quite traumatic. I remember just lying in my hospital bed crying all day. Hope you get some answers xx

I had this a couple of months ago. I just woke up one morning with no hearing in one ear. The dr said my ear drum was bulging with fluid trapped behind it. It cleared over a couple of weeks. I assume it was viral but had no other symptoms.

Sorry I have just seen this. I got mine from the NHS and its Phonax one similar to what @CobraChicken linked to.

I had this a couple of months ago. I just woke up one morning with no hearing in one ear. The dr said my ear drum was bulging with fluid trapped behind it. It cleared over a couple of weeks. I assume it was viral but had no other symptoms.

This happened to me as well. First one ear, then the other. It lasted about two weeks and then my hearing gradually returned.

The doctor said it was almost certainly viral.

Thanks everyone for your replies. Unfortunately ear drum looks fine with no fluid etc behind it so not that.... but still hopeful it clears!

Did either of their hearing return? X

Hi OP, have you any update on your hearing loss? I'm experiencing exactly the same thing as you - no hearing in my left ear for the last three weeks. Wondering what was the outcome for you?

This happened to me just before a severe dose of flu. Unfortunately after many tests (inc audiometry and a partial head MRI), I was diagnosed with a right sided acoustic neuroma and my hearing never returned. Mine was treated with Gamma Knife stereotactic radiosurgery (privately). However this condition is quite rare but it might be useful to know of its existence

Feel free to contact me if you have any questions

@Bootsandcats12
Hi. Very sadly no change for me. I've had several hearing tests since and there hasn't been any change. I have tinnitus constantly now, not very loud but noticeably there.
There was never a cause found, and no suggestion that there could be anything done to help it return.
I was given an NHS hearing aid which unfortunately I don't get on at all with.
I'm loath to spend a couple of thousand on a private one as we don't have the money right now, so am just struggling on.

Day to day it's a bit more manageable as I'm just getting used to it now, and do subtle things to help myself like making sure I am on the right side of people etc. But then in larger social situations (for example today we went to a BBQ), I just find it hard.

Sad that this has happened to me, and no happy updates I'm afraid.

Sorry to hear that @summerlovingvibes . Mine didn't come back either . I was 45. You do learn to cope. The little dance on the pavement to make sure you can hear someone as you walk along ! You've even got to be extra vigilant crossing a road.

They can put a robot on Mars. But there's this little organ an inch inside our skulls.....

@summerlovingvibes I was just coming back to this thread to ask the same; any improvement for you? Sorry to hear there’s not been. Hope you’re OK.
I had the same happen at the beginning of March this year - idiopathic profound hearing loss in my right side (had oral and injected steroids, but they didn’t help). The tinnitus is so loud and intrusive, it drives me bonkers! But hoping I learn how to habituate that in time.
To say it’s all been a shock is an understatement! Saw a great ENT privately in the early days who was fantastic and explained the psychological side of this in that you will go through a grieving process.
When I’m really struggling I often come back to this thread to read the replies of those who say you do get used to it and it doesn’t hold you back - so grateful for those posts x

All of that so very true !

Only change is that the tinnitus is getting louder which is annoying. I've also got a "sore" ear - not the actual ear as I don't really have sensation in it anymore, but the skin just around it. Actually went to the docs yesterday to ask them to check for ear infection (there's not) incase it was something that I wasn't aware of.

Have booked an audiology review because I'm really not getting on with the hearing aid they gave me so want to see if I can have a different one.

And am also planning return to work (have been on mat leave) for August. They've been good to me and can guarantee 3 months work from home. I'm usually out and about to different health care settings and the thought of struggling through a consultation with patients if they're sitting on the wrong side of me etc... so I'll be WFH for 3 months to see if I can get a better result with this hearing aid and to gently get back into work after nearly a year off before I battle with more driving and consultations.

So we will see!

Struggled badly at a social event on the weekend which makes me sad as I'm usually a social butterfly, but with lots of people in a room I can't keep everyone on my "good side" so either miss bits of the convo or have to ask for repetition.

C'est la vie - worst things happen at sea.

But it is all a bit pants!

Hi I was a similar age to you when I lost most of my hearing in my left ear. Woke up one morning with nothing but a ringing noise.

I went private, had the MRI, and unfortunately nothing can be done to assist me. I wear hearing aids (a special one called a CROSAID which has a mic in my bad ear which bluetooths the sound to an aid in my good ear).

I have two children at primary school. I have to say I struggle. I get very snappy and overloaded if everyone talks at once. I have to keep reminding my husband to look at me when talking so I can semi lip read. I have to have the subtitles on the tv. I really find socialising tricky. Especially in a busy coffee shop or a bar with music. I find myself craving silence and often have to take myself away from noise or bustle to decompress.

That said, I am getting used to it now, 2.5yrs on. I wear a sunflower lanyard at work which helps people spot that I need a bit of extra consideration (eg I sit in the best seat for my hearing in the office and in a meeting room).

We are gradually training the DC to remember mummy can’t hear them well so please take turns in speaking and walk on my right side so I can hear them when out and about. I’m considering taking lip reading lessons.

I hope you can find some support but if you don’t, you do get used to it and can manage.

I am almost deaf in one ear - since I was a child. Once you become accustomed to it, I think you will be fine. I can't wear an aid and cope very well. I don't always hear, true, but people quickly get used to making sure they have my attention before speaking (apart from DH ..) and talk on my 'good' side to me.
I had an infection in my good ear a few years ago and lost most of my hearing for a few weeks, that was really scary and very isolating.