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 😞

I'm only a paramedic but my understanding is sudden hearing loss unilateral tinnitus is typically an urgent ent referral/adhoc clinic. There's an examination that can help make this decision with a tuning fork placed on forehead and then behind ear. When interpreted correctly it can be used to identify if its a conductive or a sensorineural hearing problem I.e. which can point to treatment pathway/urgency of concerns.

Did they do the exam? Was it definitely a GP she saw or could it have been a PA? Sometimes they have much less experienced staff seeing patients and these staff can just miss the significance of the presenting symptoms I.e. oh its a young patient it'll just be a bit of wax, or a middle ear infection give it a week or 2 to settle...

She was seen by a private ENT consultant who fully assessed her and confirmed that it is sensorineural loss

Unfortunately I am certain it was a GP that she first saw as I paid (£££) for the pleasure! Couldn’t get her seen by our NHS GP that day so had to go to a private one.. Basically took a half hearted history, looked in her ear and told me I was being overdramatic in wanting an ENT referral for her. Beggars belief!

Yep definitely! Very worrying! Especially as I have to wait three weeks to see ENT again and it’s already come back after microsuction and I’ve been given no treatment in between, I just decided to buy canestan off the internet my self now!

My husband had this and went to A&E - had steroids, MRi and when it happened again CT - it’s an issue with the bones in his ears - will get worse - they can operate.

Yes I had this earlier this year in both ears. After much investigation (and a lot of 'it's stress related') I was diagnosed with Sudden Sensineural Hearing Loss, and given steroids, then when no improvement, the dreaded steroid injection! My hearing did come back slowly, but I am left with horrendous tinnitus and a 30% loss of hearing in both ears.

Hope your DD is on the mend soon.

Sorry to hear that this has happened to you too, such a rubbish condition - after lots of research in the wee hours this morning I’ve come across quite a few people who have seen improvements in the tinnitus even 6 months+ down the line so fingers crossed there’s still some hope

Wow - all that thrown at her and still managing to be a teacher! Your DD sounds like an amazing young woman!

Lovely to hear that despite things she’s still able to manage such a communication heavy career, DD is a healthcare student so the ability to communicate with patients effectively if things don’t improve has definitely been weighing on her mind + worrying her. I’ll be sure to tell her about your DD, very encouraging!

Audiologist here. If asking for a GA means there is a delay in getting the steroid injection I would discuss with ENT the risks of any further delay. Steroid treatment for ssnhl generally is most likely to work when given asap as you have sadly discovered slightly later than ideal by the sounds of it.

Re the tinnitus has she looked at https://tinnitus.org. to help her cope?

if she does have some permanent single sided hearing loss a hearing aid on that side a might help (sometimes the nerve damage leads to distortion and it’s not helpful to amplify it). They are pretty small for most hearing losses these days, and the NHS ones we fit are all Bluetooth so works like ear buds. (NHS aids are mid-high end). Alternatively, hearing therapy to learn communication tactics and make the most of the hearing she has can help, and if the weaker ear is not aidable there is a CROS system which helps with hearing sound on the side with hearing loss (you wear a satellite mic on one ear and a hearing aid on the other to pass the sound into the stronger ear). My BIL lost hearing in one ear and after a few years tried a CROS aid and really likes it.

Thank you for this, all very helpful and much appreciated. Will send her the tinnitus support link, this seems to be the most bothersome thing as her hearing is still relatively good and recovered within a day or two from the complete deafness stage (now only high frequencies lost). The period between her losing hearing and being prescribed the steroids was 5 days - did we miss the ideal window for treatment or is this still somewhat acceptable? Information online seems conflicting and amidst our panic I forgot to ask the ENT consultant..

Apologies @Flowersallaroundme - meant to tag you in the last post!

Hi this sounded exactly like what happened to me several years ago out of the blue and it turned out to be cochlear hydrops, where the pressure in the fluid in your inner ear is too high. It’s a progressive disease, in the same family as Ménière’s disease but unusually without any vertigo attacks. I would lose my hearing in one ear every few months for around a week and after each episode it would almost return to normal but with tinnitus. I found that reducing stress, caffeine, alcohol and salt helped to decrease the frequency of it happening. I’ve had this for years and only recently got a proper diagnosis. What I have is very rare so it’s likely not that, but just in case I thought I’d pass on the knowledge as i struggled to find any information about it myself. I find white noise at night helps me ignore the tinnitus and your brain does learn to blank it out after a while too.

You did well to persist and you got her treatment in a matter of days which is really good. If she only has lost the high frequencies now it is less likely to be Menieres or related conditions because that typically is more of a low frequency loss.

It sounds strange but actually a hearing aid helps a large proportion of people with tinnitus. It’s often the first thing that is tried. Even if she’s not keen, if it’s suggested it might be good to go to Audiology and see the hearing aid as most people are pleasantly surprised by the cosmetics (if that matters) the comfort and the functionality. At least then if she decides it’s not for her for now she will have made an informed choice.

I had this about 7 years ago…it’s a huge thing to get used to. I really feel for your DD. I think in most cases, once hearing is gone, it’s gone. I got a hearing aid which helps with the tinnitus and just generally makes me feel more connected to the world, but it doesn’t necessarily make hearing much easier..it’s not like a pair of glasses. It can only amplify the hearing that is left (in the case of my bad ear, not much). I still have bad days now but have learned to adjust over time and life is generally good. Please message me if you want to. My DD is the same age as your DD. I am happy to message your DD if she wants someone to chat to.

Mine is recurrent and I am in the midst of another episode. I do have a history of yearly episodes (treated with steroids) but it is every 3 weeks now for the past 5 months. The frustrating part is not the hearing loss, which I have accepted because steroids are not working anymore and it has been over a long period of time, but more the waiting for test results and figuring out treatment. I have had a series of inner-ear tests, including some extremely horrible Meniere's tests, as well as regular MRIs.

The problem with sudden hearing loss is that the cause is not easy to identify (stress, hormones, a benign tumor and so on), and the treatment doesn't always work. Also, cases in the last few years seem to be increasing. According to my ENT, children also suffer from it, but are unable to identify or articulate it.

Such a kind offer - thank you so much. I’ll speak to DD and see how she feels x

I hadn’t realised that it could be recurrent - sounds rubbish! Out of interest do things fully recover for you between cases or is there always some degree of hearing loss/tinnitus?

I has something similar in left ear several years ago. NHS was rubbish and I git no treatment at all. Now have 90% loss in one ear which is non-recoverable.
Hearing loss caused by over active immune system. Since being seen privately we've mitigated right ear by steroid injections every time there's a decrease in hearing along with immunosuppression. We're at 80% normal
In terms of tinnitus Betahistine ( serc) tablets literally saved me. The tinnitus got so overwhelming but Betahistine 3 timed a day has made it just a tolerable background noise. Takes about a month to work

I believe a bit of hearing gets lost after each episode. I say believe, because the ENT usually only checks my hearing when the attack starts and I begin the steroids, so it is only what I notice afterwards.

How is your daughter going?

Things aren’t too bad, she’s coping OK in general but having to avoid busy/loud places as noise becomes very distorted in those situations, seems to really set off the tinnitus too. Thinks that things are slightly improving overall which is a positive - we see ENT again in a few days, hoping that he re-tests her hearing in order to confirm this..! Nervous to get MRI results back, acoustic neuroma definitely playing in the back of both our minds but fingers crossed for a clear scan.

Will keep you updated!

I'm a HCP and I would absolutely want you to tell me that I'd got something wrong. Healthcare professions are very into reflective healthcare, so please feed back to the GP - or their practice if you don;t want to be specific,

Hi all - somewhat positive update on DD

Brain scan clear (phew!) and her latest hearing tests show slight improvement after the course of oral steroids. She is booked in to start the series of steroid injections into her eardrum next week so fingers crossed they also provide some help.

ENT was excellent in encouraging her to remain positive, she may not regain all of her hearing but it is likely things will continue to improve up to 1 year post-loss.

DD had the injection this evening. Managed without sedation and all being well will have her second one next week.

Although it was quick she found it really unpleasant and quite painful if I’m honest, unfortunately they’re were tears.. it was hard to watch even from my point of view! Going to request a sedative from the GP that she can take before the next one as if anything I think that today has confirmed and exacerbated her anxieties

Really hoping that it helps and it wasn’t all for nothing but only time will tell

Poor thing. It's definitely feels like quite a violent procedure but, I think, that's because you're ear is hearing it (obviously 🤣). Any other injection, you'd rub away and be fine. Fingers crossed it has some effect.

The ENT was rather unsympathetic and told her it was ‘just like a blood test’ - DD told him afterwards that it most definitely wasn’t..!

Many thanks, fingers & toes crossed here too❤️

Your poor DD, I do sympathise as I had almost identical symptoms and treatments around 8 years ago. I ended up going private after around 2 weeks waiting in vain for an NHS referral, diagnosed with SSNHL, course of steroids and then the steroid injection directly into the ear drum. I was incredibly lucky that despite the delay, I regained around 80% of my hearing in that ear. However, it did take around 3 months to get back to that level, there was no instant improvement which was very disheartening at the time, so please tell your DD not to lose hope, it does take time to improve. I still have issues with hearing conversations/certain frequencies in crowded places, but it is so much much better than it could have been.

Wishing your DD all the best for her recovery.