Thread for those of us that are deaf/hard of hearing?

[flamingo40]

I've looked through the health topics and can't find any particular areas for those of us who are deaf or hard of hearing to turn to if we are after advice or just fancy a chat with people who are in the same situation?
I guess I'm asking firstly if I'm missing something or secondly if there isn't an area we can go to would this be something Mumsnet would think about adding?

Having been hard of hearing for years and now a permanent hearing aid wearer I'd love you get help and advice and talk about experiences to other people

Where are you?

@Plantsandpuddlesuits

Loving my new hearing aids! Got then this morning and the difference is amazing from my old ones!

Congrats! It's great when you feel like something's making a real difference!

I'm in Oxfordshire but I can do online.

@Teawithmilknosugar - unilateral hearing loss - does that mean single sided then? If so then I am SSD and the tiniest bit of hearing in my left ear. My right ear is good though. I did for quite a while wear a single hearing aid but it didn't help very much. I last quite a few years with no hearing aids and struggling on. Eventually I went back to ENT and was issued some cRos Aids. Which come in a pair. The sound is picked up on the worst side and routed to the good ear. I have to say they were better than a single aid but I found them frustrating as they did make everything loud and I still struggled to hear what people talking about.
They didn't help me at work as I have a headset which works best on my good ear with no aid. Mostly I just manage and bumble along.

I think it does depend on the cause of your hearing problems whether aids and the type of aids will help you so it is worth trying.

Yes @TheSparkling one sided, my right ear is fine the left one has moderate high frequency loss. Thing is my hearing feels normal, i can hear bird singing and music fine but if I were to put an ear plug in my right ear I can hardly tell what anyone is saying and everything sounds completely muffled so I've obviously been ignoring my left ear and just using my right ear for ages. I think I'll just have to try a hearing aid and see what difference it makes

That sounds similar to me then. If my right ear was covered I can't hear anything from the left. I can hear pretty well from the right as long as there isn't any background nose to interfere and the noise is on my right side.

@SuziLikeSuziQ

Hello all! I posted waaay back when this thread was started. I've missed a lot, sorry - it dropped off my list and I just found you all again!

So... Late to the party, but...

Yes, I have a Roger Pen and table mic through Access to Work. Bloomin' brilliant! My aids aren't Bluetooth (my NHS trust are giving the kids the new ones first!) but using my Pen I can connect to my phone and get all my phone audio directly into my hearing aids, including taking calls!

For anyone who'd like some beginner BSL, I'm a qualified Teacher of the Deaf with Level 3 (but starting to work towards Level 6) and offer beginner one-time sessions or short courses. Feel free to message me if you're interested!

Love that this thread is still going and we have new people all the time!

Suzi - would you be able to do some refresher lessons? Have level 2 but v rusty and want to sign up for level 3 in the autumn. Kind of need some support on getting back up to speed!

I've lost my 2 week old hearing aids 😱😱😱

They are somewhere in the house but turned off so I can't do the "find my aids" thing on the app.

So bloody tiring relying on lip-reading and I forgot how much I miss without them in.

My old case was Red so stood out. New case is black so just sort of blends in. They are in the case, in my house but no idea where uuurgh

Oh no. 🙁 Fingers crossed they turn up, they generally do. Have you thought of getting Air Tags for them when they do tirn up?

Turn even (fat finger/ f-ing useless touch screen)

I have an appointment with the audiologist next week. I am hoping l will have two new hearing aids as the one l have at the moment (l has been told l need two) is over ten years old. What would you advise that l ask for on the aids? At present I have no way of masking background noise and I find phones, particularly mobile phones, very difficult. I am also facing a procedure on my right ear. I was given an option but persuaded to go for the first step, which is to have a local anaesthetic and the surgeon will go behind the eardrum to try and get rid of the infection. I must admit that I am not at all keen on this idea and am going to ring the hospital and go for plan B, which I would have if the first procedure does not work. This would be a new eardrum made with skin grafted from the top of my ear. I had problems with mastoid infections in my left ear and had major surgery when I was ten and in 2010 had a reversal where I had plastic bones and a skin grafted eardrum and it was a complete success.

I need to catch up on this thread as well, it had dropped Off my radar as well.

Coincidentally, I wore my hearing supine for the first time for ages. Still haven’t got into the habit of wearing them on a daily basis (I admit, feel too young at 52!), but was helping at a sports event, so knew they would help.

Still haven’t worn them to work yet. Work in a medical environment, and always taking masks on and off. Without a mask, my hair covers them. At work, tend to tuck my hair behind my ears. I do think it’s ironic that I‘M self conscious in a work place that deals with medical issues!

Has anyone watched Coda, which features a deaf family? Really good film.

Do any of you have partners that just don't understand what it's like to not hear well? DH told me this morning he finds it very hard living with me not hearing and is embarrassed by how much I miss. He was rather more brutal than that.

He knows I've tried so hard with aids but they cause such horrendous pain due to pressure. They've been altered several times and I still can't hear speech well (cookie bite loss).

I think he's going to leave over it and I'm heartbroken. How can I make him see what it's like for me?

@Memom If your DH would leave you over something you can't control than you're probably better off without him. He's embarrassed because of your deafness?! What a cruel thing to say.

As for the hearing aids, you need to keep bothering audiology until they are right. It takes several visits until mine feel & sound right and I always mither them until they do. It makes a real difference when they have the right set up. If the moulds are painful they either need bits shaving off or need to be re-done. Good luck, it can be a bit of a mission getting them right.

When people challenge me about my aids I ask them if they would wear glasses if they couldn't see properly. When they say yes I ask why they wouldn't wear hearing aids if they couldn't hear properly. They normally shut up after that.

OP here.... sorry I've been awol. For some reason I was logged out and not getting notifications.
Great to see the thread still going strong, off to ENT today so I'll pop on later and catch up

Yes, I'd be happy to do a bit of refreshing/conversational BSL if people want to join.

It's terrible your DH has said he's embarrassed by your hearing loss. Has he actually considered what he's saying? A hearing loss, or any disability, is not a cause for embarrassment and that he feels this way and actually told you is just awful.

I totally understand you're heartbroken. I can say that you're better off without someone who is so horrible, but that's not going to change how you feel. You may not want to think about him leaving, but I don't think it would do you any favours to try and get him to stay.

Do you have someone you can talk to in real life? Don't bottle it up, don't cover for him and don't you feel embarrassed about the situation. None of this is your doing; this is him showing the world just how shallow and unsupportive and uncaring he is. 💐

I've had an ENT appointment today with a constant.
He's basically said that my hearing is they of an average 80 year old. I'm 41!
Devastated isn't the word.
I've been referred to a specialist for an mri but it's unlikely anything can be done.
He said it's likely I've been like this most my life and muddled along.
I cried in the car after

Hopefully you'll be back to your age once you have hearing aids. Try not to be upset.

Sorry you feel down about it. It's hard to be told news like that, especially with hearing loss, as I think it's still viewed as an "old people have hearing aids" type thing.

I don't know the cause of my early-onset loss either and I'm 40. I haven't had an audiology appointment for several years so I've no idea how much my hearing has deteriorated (I know it has to some extent) so I'll have to prepare myself when my next appointment comes around for whatever they have to tell me.

No advice really, except once the news has sunk in, I'm sure you'll feel more philosophical about it. You can then think forward to the MRI and what it may show. Not easy when you get any news like this, though. 💐

Am I the only one who doesn't connect hearing loss to just old people?!

No you are not. I have always been deaf. I've grown up with deaf children and have seen many people develop hearing loss in early-mid adulthood. But ENT and people in generally still associate hearing loss with 'only old people'. It frustrates me hugely.

Also telling someone they have the hearing of a 70/80 year old doesn’t actually mean anything! (I have heard this from other people not just the pp). Hearing levels vary at all ages and there is no specific hearing level at any age.

@flamingo40 having hearing loss confirmed is hard. But now you know, whatever the mri shows, push to get hearing aids, ask for a referral to hearing therapy to help you get the best from your hearing aids, sign up for a lipreading class (people of all ages attend not just old people!), you will learn about coping strategies, devices that may help you and be able to talk about any issues with others who understand and may have suggestions for you.

Thanks for all your replies.
Let me introduce myself for those of you that don't want to scroll to the beginning.
OP here....
41, mum of teens. Profoundly deaf in both ears.
I've had hearing aids for 6 years ... more recently swapped to private Bluetooth ones.

I noticed my hearing issues a long time ago but muddled on and was in denial.
When I had my first pair I hated them. I took me a long time to accept.
My Bluetooth ones are amazing, so much more advanced.
I'm very open now about my hearing loss, I've realised I've relied for most of my life on lip reading. Looking back so many examples in my life where I now realise I was hard of hearing.
It wasn't until recently that I joined a local deaf group that I realised how much support and help I've missed out on.
Basically I was given my first pair and practically left with no info or explanations.

So I've pushed for more information about my hearing loss.... which lead me to yesterdays news.
It's nothing I didn't know it's silly, but to have it confirmed exactly how bad it is was a mixture of relief and sadness.
Unfortunately it seems for me that it's as good as it gets now.
The mri is more to see if there's anything sinister and rule things out.

Fresh today feeling back to my more positive self. Accepting my disability because that's what it is.
Living life and not letting it stop me like it has before.

No! I'm 40 and I know plenty of other people my age with varying degrees of hearing loss and I teach Deaf children! But I agree with @daisychicken that some ENT people still see it as an old-people thing.

@flamingo40 I'm glad you're feeling more upbeat today! I think it's natural to sometimes be upset about a physical loss.

(I actually feel more annoyed on your behalf about what the ENT person said. How is it helpful to compare a person with an average person twice their age? I'm sure they wouldn't say that to a young person suffering from something like hearing loss or arthritis, so why is it okay to say to an adult? Just like an adult education teacher wouldn't tell an adult they had the spelling level of a seven-year-old or whatever. Just rude!)