Sudden hearing loss

[stressedespresso]

Anybody got any experience of this? AIBU to worry this may be permanent?

DD (19) woke up one morning last week almost fully deaf in one ear, accompanied by severe tinnitus. This was a big shock and completely out of the blue - no ear issues in the past and she’d gone to bed the night before feeling absolutely fine.

Saw an audiologist that afternoon who suctioned quite a bit of wax out, no improvement in symptoms though so we were advised to see a GP + look into an ENT referral. The GP was very reluctant to refer - basically gaslit DD, told her to stop googling, that she was being overly anxious and it would probably go away in a few days. Looking back I am now furious at this as the guidelines clearly state that sudden hearing loss with no obvious cause is an emergency and needs urgent ENT assessment + steroid treatment.

Lo and behold I ended up paying for her to see a private ENT consultant a few days later who was equally angry at the GP being so dismissive - he did a hearing test which confirmed profound loss, immediately started her on high dose steroids and has also ordered an MRI of her brain to rule out a tumour which we are now awaiting the results of. He was very (maybe too!) honest with her and has warned that there is no guarantee her hearing will return, especially since she was delayed in starting the steroids. Currently a week into treatment and no real improvement, after this there is only one other option and even that isn’t guaranteed to work. Frankly I am terrified for her as it is affecting her quality of life and ability to socialise/communicate so much. Her mental health is starting to suffer drastically and she’s really worried + stressed about the future if things don’t begin to look up.

Can anyone offer any insight into this? Has this happened to you/your DC? Handholds very much needed and appreciated 😞

Yes I have these. A microphone is placed in the non hearing ear and transmits sound to the aid on the hearing side. It balances sound better and amplifies it but still cannot identify where the noise is specifically coming from.

Op, I'm sorry your dd is struggling still. Fwiw I have had unilateral hearing loss since childhood but only recently got hearing aids when I realised the compensating ear was feinter and has lost certain frequencies. You can cope pretty well without ha but it does affect confidence.

I agree with this most definitely ( practice nurse).
Hoping for the best for your poor DD

Whoops, just seen that you have! Sorry.

I’m a little late to this thread but I just wanted to say that I’m sorry to hear about your daughter. I developed SSHL after a mild cold about 6 years ago - was also fobbed off for a good couple of months until I saw a private ENT. I ended up with moderate/severe ‘cookie bite’ loss - so it’s the mid frequencies (basically speech) which are affected. I found it very upsetting at the beginning as I felt I had no hearing on that side at all, and I had pretty bad tinnitus too.
I did wear a hearing aid for a few years but then got out of the habit, and have actually found that I don’t really need it now to get by. My hearing is no better on that side but I think I compensate by lip reading and with my other ear. The tinnitus also got less bothersome as time went on and my brain got used to it - it is worse when I’m stressed but manageable most of the time.
So I just wanted to say that while it felt awful at the time and I was very upset, now I manage ok day to day and don’t really think about it much.
I hope that your daughter has some success with other treatments but just wanted to share my experience in the hope it might help a little.
Best wishes to you and your daughter - you sound like a lovely mum.

I'm a little late to this but just wanted to add that I had the same as a child and certainly managed a full social life.One thing I would say is be certain to protect the other ear and be very robust with healthcare professionals. If it were eyes, they'd take it seriously.

Unfortunately, in my 40s, the good one became less good. I'm now 53 and I had anothee SSHL incident last week. Some hearing has has improved spontaneously and I have just had one week's course of steroids but my hearing is still fluctuating.

I wrote a little about my childhood experiences (RNID also published it):

https://medium.com/@francescahedges/living-with-asymmetrical-hearing-loss-d85d170f0b52?sk=9cb45ae6a33a7deab3b93a61ee7f6c7c

Don't read my Doomsday Diagnosis piece, though, as that is another kettle of fish entirely

Just watching the news now and noticed the newsreader, Lewis Vaughan Jones, was wearing a hearing aid. Looked him up and this is a bit about him. Sudden hearing loss as well.

BBC News - Newsreader Lewis Vaughan Jones makes debut wearing hearing aid - BBC News
www.bbc.co.uk/news/uk-44910201

I just wanted to drop into this thread to say thank you to OP and everyone who has contributed to it.

We are on day 6 of apparent SSNHL with our 12yo DD. She started steroids yesterday following a clear MRI scan, blood tests, an overnight hospital admission, eventual ENT consult and lots of round the houses including an initial incorrect and very off hand diagnosis of impacted ear wax from a practitioner (not a doctor) at our local children’s Urgent Treatment Centre. We had been advised to attend there after calling 111 about 12 hours after our daughter told us she suddenly couldn’t hear anything with her left ear last Saturday evening.

We’re currently in the awful limbo land of waiting and hoping, praying for some improvement. The hearing loss on her affected side is almost complete and effectively she has no functional hearing on that side. It feels devastating and I am swinging between trying to desperately keep things in perspective and feeling this huge sense of loss for her and worry about her.

DD is AuDHD and already a natural introvert, which is all fine and good as far as it goes, she is her perfect self, but it is the thought of the confidence blow and the idea of her disappearing further into her shell due to this new deficit in being able to connect to the world around her, that fills me with sadness and worry for her. 😔

Can I ask if there is any update or further improvement for your DD OP @stressedespresso ? I truly hope so.

Thank you again to everyone who gave their accounts and experiences here. It’s really helping a worried mum right now 🙏🏼❤️

Interestingly heard on news yesterday that it should be treated with steroids within a week of onset to get best potential results.

Yes, watched that report on the news. They now appear to have data to support that the best chance for recovering some hearing is steroids in the first week. Still with the caveat that it doesn't always work.

@mumoflittlemice , good luck to your daughter. My hearing didn't recover until about 6 months after I lost it so don't lose hope if your daughter's doesn't return immediately.

It’s upsetting for sure. The uncertainty and not knowing, the waiting.

Did DD have a bug, head cold ?

Although my natural hearing in my right ear is all but gone due to sudden hearing loss, a hearing aid does restore hearing albeit the plastic tube the goes in the ear has to completely fill the ear so is more noticeable at times ( depending on length of hair! ).

Expensive, private ITC ( in the (ear) canal ) hearing aids would be unnoticeable.

Wishing your DD well in the next couple of weeks.

@LIZS and @SwedishEdith thank you both for your replies!

We are at least within a week of onset of symptoms (it will be one week tomorrow and she started steroids yesterday) so I will pin some optimism on that.

She’s just taking her second dose as we speak (12 x 5mg tablets, as the ward only had that dose of tablets!) so currently strapping in for the rollercoaster of high dose steroids!

I’ve already started taking about the possibility of the ear drum injection with DD, as the ENT doctor did touch on that idea yesterday if the oral steroids have no effect by next week. The accounts of that here, while a bit disturbing in some cases (your poor DD OP!), are still helpful, as they are honest and help with preparing for this possible eventuality.

If anyone has a link to that news story, I’d be so grateful. Thank you 🙏🏼

www.bbc.co.uk/iplayer/episode/m0022lqq about 25 minutes in.

@tanstaafl thank you 🙏🏼 and no, no bug, no head cold, nothing. We’d been swimming twice the two days before it happened, so at first I just thought it was a bit of water trapped in her ear…

@LIZS thats so kind of you, thank you. I shall check it out 🙏🏼

Was regaining your hearing sudden or gradual? I've regained some of mine but it fluctuates. I'm 6 weeks in

This is an article by RNID based on the study by UCLH rnid.org.uk/2024/09/doctors-urged-to-treat-people-with-sudden-hearing-loss-within-seven-days/?

I think it was on and off. I think I'd got to the acceptance stage that it wasn't coming back before realising it had come back. Certainly back enough to where it was. Any audiographs still show some hearing loss for me in both hears but that's because I'm older and listened to too much loud music in my youth.

mumoflittlemice I have PM'd you about our story x

Thanks. It is the same for me. I had a bit of wear and tear in my right ear and a sudden loss in childhood in my left ear.

Did you have tinnitus? I find my hearing is better when it calms down a bit

I did have tinnitus for quite a while but that disappeared as well. Hope it does for you as well.

@stressedespresso

I've been saying for a long time that to get help through the NHS people are going to have to be very eloquent and firm to get anywhere. There are too many people using a service that hasn't expanded. Doctors are getting very reluctant to give out antibiotics. I would be bloody fuming too ! As you quite rightly said sudden hearing loss needs to be taken seriously especially in someone so young . Hope everything turns out ok