Sudden hearing loss

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,

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?

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

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.

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.

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.

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.

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.

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.

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.

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!

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...

I don’t want to come across as flippant and I’m not someone who blames covid for everything but the last time I had covid, it affected my hearing on one side terribly and suddenly, lasted a couple of weeks.

I hope you and your daughter get some answers/relief soon.

My brother had an accoustic neuroma too, the only initial symptom was sudden hearing loss in one ear.
As you say, they are extremely rare, and he was told that he'd probably had it for years as they grow very slowly. He's also fine now after it was operated on, and has no after affects, except for the hearing loss.

DH and DN both had this in 2019. DH had steroids (which was a nightmare - it actually felt like being married to the hulk, he was so rage-y). His hearing did gradually return, though with some loss and tinnitus. DN also regained some hearing but now uses aids. DN's treatment was all through NHS. DH initially went private. In both instances, it seemed as though the treatment was steroids and crossing fingers that hearing returned. Both cases were result of cold type viruses that resulted in nerve damage in the ear.

My DD had gradual hearing loss 3yrs ago and has eventually been diagnosed with auditory neuropathy spectrum disorder for which there's unfortunately no cure. Incredibly rare for adults to develop this - much more common in babies / young children.

She was 23 yrs old at the time and it had a huge effect on her mental health at the time together with feeling very isolated. She is doing much better now and is a full time teacher. She has loss in both ears and hearing aids don't work for her as it's the speech perception she struggles with most. She manages by lip reading (almost subconsciously) and can hear female voices much better than male voices.

Anyway there is light at the end of the tunnel but I'm so sorry you're all going through this. It was such a stressful time and the only thing you can do is be her advocate and fight for referrals and tests etc.