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 😞

Wishing your daughter well 💐

Unfortunately this happened to me nearly 3 years ago. I just went suddenly deaf in one ear with roaring tinnitus. I went to the pharmacist who said it was congestion, then an audiologist in Specsavers who said it was wax (didn't test my hearing just looked in my ear) & then a GP who also said congestion. I went private to an ENT who said it was SSNHL. I had severe/profound hearing loss in one ear and I'd likely never know why. I did have a scan to rule out a tumor. I got onto steroids 3 wks after onset of symptoms, then after another 2 weeks I had 2 injections in my ear drum (which were fine, slightly uncomfortable). Unfortunately nothing worked. I regained a little hearing and tried a hearing aid but it was no use. I can't make out any speech through it. Tinnitus is still constant. It sucks. I was also very angry that I had been misdiagnosed by so many health professionals in the first 2 weeks. You do get used to it to a certain extent but it takes time. Tinnitus I would happily get rid of but I do manage to ignore it most of the time. There is a hearing aid called a cochlear implant that is supposed to be really beneficial for single sided deafness but unfortunately they don't offer it in the UK. Could be a possibility in the future though or through private healthcare (though you're talking £50,000 +). I hope your child gets sorted & sees some improvement.

Cochlear implants are available on the NHS; one of my neighbours had the operation last year at our local hospital and it was very successful. Hopefully, though, the OP's daughter will recover and, if not a complete recovery, be able to benefit from an ordinary hearing aid

I had this. My GP prescribed strong steroids immediately. I think this isn't a guaranteed cure but works for some people. It worked for me and my hearing came back. I then I got really loud tinnitus which lasted for a week..the steroids made me very emotional. tearful over little things. Completely better now. I hope your daughter is better soon.

@DancingFerret Are you saying that your neighbour got a CI on the NHS for single sided deafness? I was under the impression that the criteria to qualify in the UK is severe or profound hearing loss bilaterally... Certainly was the case a couple of years ago.

I think you have to have severe hearing loss in both ears to qualify for one CI. I did contact various people a couple of years ago about it. I did look down the private route but that seemed very limited in the UK.

Although we are very thankful that she got the all important oral steroids within a reasonable timeframe the side effects were truly awful, I had no idea of the extent that they would affect her.

Extremely emotional, awful insomnia to the extent that she went 48 hrs without sleeping at one point, intense hunger - I could go on! It was a very high dose so probably worse side effects than most but hats off to anyone on steroids long term, they’re really not pleasant in the slightest

I’m really glad that things fully recovered for you - very encouraging! Also very good to hear that you had such a proactive and knowledgeable GP who was able to recognise things so early on

Yes.

https://www.england.nhs.uk/wp-content/uploads/2013/05/D09sa-cochlear-implantation-services.pdf

Yes, exactly as I thought. Only for people with hearing below a certain threshold "bilaterally without acoustic hearing aids."

DH looked into it very thoroughly when he originally lost his hearing completely on one side.

Obviously they do offer single cochlear implants for people with bilateral hearing loss, but not for people who still have an unaffected ear.

Thankfully single sided deafness sufferers are acceptable candidates over here in Canada (only changed in the last few years) so he since got his CI and it's made a huge difference to him - including curing his severe tinnitus.

Maybe the NHS will follow suit at some point.

There are upsides to steroids. Every time I need to have oral/IV steroids (10 days every month for the last 8 months), I plan things to do with my sleepless nights and overall high energy. So, I may not be able to hear or sleep, but my house is immaculate, my garden is schmick and our renovations are coming along quicker than anticipated. And then when I get really emotional, DH sends me off shopping (to get me out of the house, not to spend money). The small things 😊

Goodness.. I wish we could relate!! DD had all the sleepless nights but none of the energy. Poor thing was so exhausted that she was visibly shaking and bursting into tears on an hourly basis at one point, not even hospital strength sedatives were helping. Very thankful that her final dose was yesterday.. I salute you @Laffydaffy, we hadn’t appreciated the extent of the side effects whatsoever!

So sorry to hear that this has happened to you too. It really concerns me how uneducated most GPs and even audiologists are when it comes to SSHL - considering how time critical it is for steroid treatment this is very alarming and most certainly there are people (you included) who have needlessly suffered irreversible hearing loss as a direct result. Really not acceptable in this day and age!

We are very fortunate to have private health insurance so it is a big comfort that DD will at least have access to the best and most prompt care going forward. I don’t think that she is severe enough for a cochlear implant (and it seems that things are hopefully improving a bit post injection) but it is very good to know that it would be there for her as an option should it become necessary.

Thank you, yes my ENT told me that GPs are woefully uneducated about SSNHL. I really did tell each medical professional that I couldn't hear anything out of my affected ear and that I had roaring tinnitus (made louder in noisy environments). I also said I didn't feel congested though I did have a slight cold when it happened. Very frustrating. I have private healthcare too but I didn't think to use it in the first couple of weeks as I had no reason not to trust the health care professionals I had seen plus I have health anxiety so I tried not to Google as that's generally a bad idea when you're anxious. It is what it is but it sounds like your daughter is making promising improvements and even if she doesn't make a full recovery a traditional hearing aid should be beneficial. Good luck. I hope she continues to do well. I did join a Reddit group called Mono hearing when this first happened. It is full of supportive people with single sided deafness and has great advice. Might be an idea for your daughter.

Just an update - DD had great improvement in the days after the first steroid injection, all seemed very encouraging and she was feeling really positive that things were returning to normal. Unfortunately she caught a cold/flu virus over the weekend which has significantly worsened things again, confirmed by another audiogram😞 She was due to have her second injection done tonight but the ENT didn’t want to risk knocking her immune system down further with the steroids when she is already ill.

We will try again for the injection next week when she is fully recovered from the virus. Hoping and praying that this isn’t a permanent setback in her hearing but only time will tell..

How frustrating 😣
Hopefully with plenty of rest and nutrition she will be in a better place to have the second injection next week. Vitamin C can do wonders for a quick immune boost.
Keeping fingers crossed for your DD 🤞

Have a very upset DD here tonight 😞

No improvement in her hearing test this evening so the decision has been made to stop treatment. No more steroid injections as in the consultant’s mind the chance of her getting any benefit so far down the line is so slim that the risk of infection etc is not worth it. We are out of options and I am devastated for her. She’s at an age where the vast majority of her socialising takes place in loud cafes, pubs, clubs etc and it just feels to her that this aspect of her life has been stripped away overnight. She just feels so down and hopeless, there is nothing that I can do or say to make it better

We are going to try hyperbaric oxygen therapy (recently FDA approved for sudden hearing loss) as a last ditch attempt as well as every supplement that I can get my hands on for her. Anything feels worth a try at the minute..

Sorry for the rant. DD has been very private about it in real like so there’s not really any friends or family who I can confine in!

Oh your poor girl. I don't know if you'd want to, but that is worthy of a complaint against that first GP that meant prompt treatment was delayed.

She will find a way of living life to the fullest around this, but I'm sure it will be a huge adjustment.

Should read as real and confide - stress typing!! 🤦‍♀️

We’ve sent a complaint in, I also asked the ENT to send resources re: sudden hearing loss for education purposes to the practice manager which he gladly did! DH wanted to take legal action re: negligence.. although it is tempting in order to make an example out of DD’s case, as a fellow HCP I would never do it. As frustrating as it is GPs are human too and everyone makes mistakes

Your poor daughter 😣
I am very sorry to read the update.
Might there still be a slim chance that the hearing could come back naturally over time? Please excuse my ignorance if that’s not the case.
Just wanted to send a hug x

So sorry OP. She'll learn to live with it but it is hard, particularly with socialising at that age. Let's keep positive that there might be some improvement.

Please don’t apologise! No ignorance at all

Things can improve up to 1 year post-loss, although the chances are slim at this point (1 month down the line) and the likelihood of her hearing returning to complete normal are realistically 0. We had a very frank conversation with the ENT consultant tonight who basically said that he didn’t want to fill her with false hope and that she’ll just have to learn to live with it.. Her brain should apparently adapt over the next few months and the ‘good’ ear will learn to compensate. I appreciate the honesty but it’s all very doom and gloom for a 20 year old!

Sorry to hear that OP.
I hope she does have some improvements and adapts well.
She is very similar age to my DN who wears hearing aids very successfully and spends a lot of time at clubs and gigs. Her aid looks a lot like jewellery and she adjusts it with her phone for the setting she is in. Your dd may not need this route but it doesn't have to be a barrier to socialising and partying.

On a practical note, if your daughter doesn't regain her hearing and would prefer not to soldier on with single-sided deafness, she could consider CROS hearing aids, where sound from the non-hearing ear is transmitted to the hearing ear. While it's entirely possible to function with hearing in just one ear, they do make a difference, especially in social situations.

Don't you mean sound for the hearing ear is transmitted to the non hearing ear? This must be new, I've not heard of it.