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?

Thanks for this butterfly. Feel like you've explained my life! I have a 3 yo & 9 month old baby at the mo and the noise in the house is terrible sometimes! It will definitely be a bit easier when they are a little older and can understand a bit more (I hope). Just daily stuff like if I'm in the kitchen with the kettle boiling or sink water running etc I can't hear anything else because that sound jsut drowns everything else out.

Interesting about the CrossAid - the private audiologist I saw at the start talked about this but at the moment it's just not affordable (mat leave) but I'm hoping that my work may help me towards it ... or once we have a bit more money when I'm back at work. Will see!

All a learning but some useful hints and tips on here so thank you to everyone replying.

My people!

For me the hearing faded away in my right ear over a few days.
Didnt get steroid treatment until it was too late ( first Covid lockdown ).

pp have mentioned nausea, from what I understand it depends which part of the ear the problem is in. Mine is the part where the cochlea is so I had the nausea.

Which has flared up again last couple of weeks after a couple of years of dormancy. GP gave me a 4 week course of serc 16 ( betahistine dihydrochloride ) which seems to helping.

As the ear drum and nerve are ok otherwise, an hearing aid gives me most of my hearing back , but it’s a bit fuzzy in that ear.

Crossaid (or something very similar) available on NHS for my friend at least (your age) so I would push for that. Tho he hasn’t loved it…

Thanks @elderflowerandpomelo . Would you mind asking your friend the name of it so I can do some quick research and go armed with all info to my appointment on 1st Aug? The last few audiology appointments I've just been met with brick walls.

The crossover hearing aid that my DH trialed was one of the Phonak CROS range. He found it helpful, but his cochlear implant surgery has been life changing. It gave him back directional hearing (which the crossover aids don't do, since you're still hearing everything through only one ear) and, as an amazing added benefit, it actually resolved his severe tinnitus too. Not completely, because he still has it whenever he takes his CI processor and coil off overnight, but it at least gives him respite from it during the daytime.

I'm another one who wondered about Covid. I had conjunctivitis, sinusitis, tonsillitis and an ear infection, all at the same time. The general consensus was that it was covid, even though I tested negative.
My eardrum burst and I lost the hearing in that ear obviously, but the hearing went in the other side as well. Audiology tests showed a moderate to severe hearing loss, but it came back over about 6 weeks.
Once the other eardrum healed that came back too.
I hope yours recovers

I got my cros aid for free on the NHS. Worth an ask?

This is really interesting. I’d resisted a cochlear implant as thought it wouldn’t do much but if I could get rid of the tinnitus my life would be vastly improved!

@CobraChicken it’s such a shame that the NHS, due to NICE guidelines, doesn’t approve cochlear implants for single-sided deafness. I’m going to have to cross everything that they follow suit of quite a few other countries now and change that as it’s prohibitively expensive to self-fund! I’ve read that many experience a reduction in their tinnitus with it. Pleased the CI surgery was such a success for your husband

My mum lost her hearing (bilateral) very quickly in her 30s. She was given an MRI at the time and nothing was found. She had hearing aids which started well but as thing deteriorated became pretty useless. She had constant tinnitus and earworms. Wax was a problem with the hearing aids and she had to get microsuction 6 monthly. She became very comfortable herself and found socialising very difficult. If I'm honest it really had an effect on our relationship because she wouldn't learn sign language and was so hard to communicate with. She called me once a week but couldn't hear anything I said so just spoke at me for the time. It made her life very small but thankfully her job wasn't a problem but she was completely unable to answer the phone at all. She tried to get private hearing aids but her hearing loss was too advanced, they wouldn't have helped her.

She got a cochlear implant 2 years ago and it has been night and day. I can actually speak to my mum again. She hears very differently now and still needs some support but I can't even begin to tell you how amazing its been.

Anyway, I'm sure this would apply to you because it's just unilateral but as part of the pre op of the CI she had a CT (only had an MRI when it first began). The CT showed otosclerosis but the MRI had never shown this. She was told that because of this finding her hearing loss was most likely genetic or due to measles as a child. She was also told that if this otosclerosis had been found during her initial investigations she could have had an operation and potentially saved her hearing.

@summerlovingvibes Just wondering a few years down the line how you are doing now? I have lost a lot of hearing in my ear 4 months ago and the distress and tinnitus are really horrible :(

@mjf981

Sadly my hearing never recovered and I have tinnitus 24/7 now which never stops or goes away.

I hear some tones, but not others.

They investigated everything and found no known cause.

I have tried a few different hearing aids but none work because they amplify the tones that I can hear too much, but the tones I can't it doesn't make any difference. So hearing aids basically just make it worse.

I got something from work which vaguely helps but I don't use it that often. It's a little microphone thing that I place near to the person speaking (if we're in a large meeting room etc) and it picks up their voice specifically to dim out the other voices. You are add directional sound to pick sound up from different directions. This is then blue-toothed to my hearing aid. Makes it slightly clearer.

Sadly I've just had to learn to live with it.

I've struggled with my children, and really struggle with social situations and in noisy environments. It's definitely changed my life.

I honestly would do ANYTHING to get rid of the tinnitus. The hearing I can cope with but the tinnitus is awful. I'd sign up to any research study going and be a happy guinea pig for any new experimental treatments!

I don’t suppose you’ve recently had Botox have you? An allergy to it can cause deafness.

Sigh. I'm so sorry. It really is a very cruel thing to have happen.
Hopefully in time we will continue to adjust..

@DixiePeach no I haven't ever had Botox.
Was a couple of months post partum, and the biggest suspicion they had was Covid but by the time I saw a specialist & tested I was clear as that was a couple of weeks after the event.

I've heard of a number of people having this either while pregnant or soon after. I wonder if there is a link. Maybe something to do with blood flow/microclots? Could just be coincidence though I guess.
I know my friend developed tinnitus while pregnant, which resolved a few months after giving birth.

@mjf981 yeh, the ENT consultant did mention a link with pregnancy / birth / changes soon after etc but said there was no way of concluding it.
But that's interesting / a possible link.

I tend to blame it on covid when I'm having a bad & grumpy day of it, but maybe I'll swing between covid and child who is now almost 3 depending on what has annoyed me more that day! Haha!

I was so hopeful for a while that it would resolve itself but after 2.5 years I've given up hoping now.

I do think that my hearing may be a tiny bit better but the tinnitus hasn't changed. Although it could just be that my brain has adapted fully to hearing with one ear and so I don't get issues any more with the direction of the sound etc, my brain has kind of re-wired to know.