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

Cant remember who said they wished your ears went purple to say you were deaf to avoid all the explaining! I've been deaf since I was 2 (now 65) started off with high frequency loss then dont know why added low frequency in my late 40s. Have NHS digital aids which as someone said upthread are same as those available privately. Cant safely use amplified phone so love being able to text. Heartily recommend doing lipreading classes - adds expertise to what you unconsciously do anyway. Agree its very tiring - I try to explain if asked that while spectacles restore your sight almost to normal hearing aids only amplify in the areas you already can hear - so my 90db+ loss is reduced to a 40db loss with hearing aids - and sorry I still need to see your face! As everyone says masks have been a nightmare. You do need a sense of the ridiculous to survive deafness! Hugs to everyone

Hello! I've been hoh since I was about 4, but not told till I was 16.
I managed without HA most of my life as I didn't like them.
In the last couple of years I've had Livio AI HAs and they are fabulous. I run my iPhone through them (Life changing!) and also have a gadget/microphone I can connect to and ask people to wear (like exercise class teacher, lecturer, speaker)
I think I have only 30% hearing but would have to check. I've got awful tinnitus, full spectrum of sound, but never known silence so it rarely bothers me

Fantastic idea OP especially in this age where everyone has their mouth covered 😭. And hi fellow HoH's!
I'm completely deaf in one ear, declining in my good ear, had a HA 20 years ago but didn't help that much. Tonnes more issues in childhood too!

Reading these posts about taking classes and not knowing what to do or feeling socially excluded, I honestly feel happy to share these fustrations.
I hate workout classes in particular!

Workout classes 🥴 the ones where they do a few mins of eyes closed relaxation at the end, with the teacher murmuring stuff that everyone else can hear but you can't - so you can't relax because you're hyper-alert to the cues of those around you, that it's time to do something different!! Gah...

Hello, Good thread.

I'm 50. I have had severe mid tone hearing loss in one ear since about the age of 12, which was caused by a virus. The high and low tones fall in the mild to moderate tones and I can't hear speech in that ear. My hearing is now declining in the high frequencies in my good ear and creeping into the mid tones. I have only had hearing aids for 3 years, since my better ear noticeably deteriorated.

I was using NHS Signia hearing aids and they have now switched me to Ambio 77. I'm not which is better. I can't hear the TV at all with the new ones. The overall sound is OK-ish but not brilliant and one ear cuts out.

I would like to try in the ear hearing aids because having to pop my glasses back on and off at work, along with the mask, knocks the aids all over the place and they are massive, too. The in the ear aids aren't great for severe loss, I'm told, but then the NHS has only given me 4 programmes for both ears anyway.

I am constantly asking people to repeat themselves even with the aids if they are softly spoken or have any kind of accent. I have to be far more upfront about it now because the masks add another layer of muffle.

I'm used to be challenged but having both ears affected is a different kettle of fish entirely and I find it very disabling and frustrating.

ooh, poking head in here - I have mild-moderate hearing loss in both ears, and have NHS HAs. But, I'd like to ask a stupid question about bluetooth HAs - do they work in the same way as headphones for connecting to your phone? And can you have one HA working with your phone and the other not connected so you can hear what's going on around you? And do they connect to all bluetooth enabled devices (so tablets, smart TVs etc) or am i being overly optimistic?

I need to get a new phone, and am possibly able to manage private HAs as well, so it would make sense to have the two able to work together without needing extra bits of kit.

I really struggled going shopping yesterday with both DDs, I couldn't keep track of the conversation at all with all of us in masks, and the hustle and bustle of busy shops. I'm really hoping we can do away with masks totally at some point, it makes life so much harder trying to work out what the GP receptionist is asking, or when the shop assistant is giving you options for things.

Hello I too wear hearing aids in both ears for mild-moderate loss. After 5years they were replaced a few months ago NHS Signia blue tooth enabled. They are brill I can switch between work & personal phone, take calls through, listen to radio / Podcasts via them using App on my phone. I do have to be careful if both phones have Bluetooth turned on I get a call in one ear as it splits the signal. Game changer though for long video work calls having sound straight into my ears. I’ve loved working from home it’s so much quieter and easier. As commuting to busy cities, train stations, conference rooms with Air Con units buzzing was exhausting with and without the aids.
The only downside is my kids don’t “see” when I’m listening to a work call so I have to wave at them to shut up as the aids aren’t visible if my hair is down unlike a headset. I’m not sure how they’d work in an open plan office though if we ever go back to that I’d have to switch to noise cancelling headphones again for calls.

Hi

Worn a hearing aid since I was 5. I had meningitis when I was 2.5 which is what caused my hearing loss

I have no hearing at all in my right ear, and only 30% in my left.

I wear an NHS prescribed digital hearing aid

@MyVisionsComeFromSoup to answer your Bluetooth question my aids only connect to my two phones as I had to request a separate activation code for each device. When I did the lady was ‘ooh we’ve not had someone ask for two devices before..’ so they don’t link to my iPad as I chose to have them linked to my work mobile and my personal mobile. These are NHS supplied I expect if I went private you can just pay extra to connect to any Bluetooth enabled device?
To watch TV I still use separate headphones and take my aids out as I find it more comfortable the rest of the family just watch TV normally whilst I wear my headphones at same time.

@Jojobees

I’m not HoH or deaf but my child is, he wears 2 aids and as it’s genetic there’s not much that can be done other than aids. He’s just turned 2. I’m not sure I’m the target audience you were looking for though!

@jojobees same as my child. His hearing loss is genetic. He is 21 now and has been wearing hearing aids since the age of 4 (it wasn't picked up until then, felt a bit of a failure for not realising).

Fab, thanks so much Biking, that's really helpful - I wasn't sure what I didn't know, so I'm not now going to look like a total idiot when I speak to the audiologist .

@Jojobees @Parky04 Same - 15yo son has moderate hearing loss in both ears. We started genetic counseling when he was in primary school to try and find out cause, but stopped after a raft of tests/scans etc as he was heading up to Secondary school. He's always coped really well, but finds it exhausting.
Sadly last September he chose not to wear his HA any more as he couldn't cope with the masks pinging the HA out at school (he was given option of not wearing a mask, but didn't want to 'stand out' even more ) plus he really didn't wear them at all through the first main lockdown so got out of the habit. It's a battle I've not yet given up on but have let it go for the time being......

Great idea! I have mild-moderate Sensorineural hearing loss in both ears, probably since I was a toddler. Currently wear NHS Phonak digital hearing aids. I actually hate wearing hearing aids (find them uncomfortable in my ears). As soon as I'm on my own I take them out.

@Walkacrossthesand

Workout classes 🥴 the ones where they do a few mins of eyes closed relaxation at the end, with the teacher murmuring stuff that everyone else can hear but you can't - so you can't relax because you're hyper-alert to the cues of those around you, that it's time to do something different!! Gah...

That's the nail on the head 😂

I'm lucky that my instructor is aware so are the lovely ladies in my classes.
For floor work she will demonstrate it then walk around the room showing me if I'm behind. Then if I'm still on the floor when it's the end of quiet time someone will tell me it's over.
I did bootcamp at the weekend and it was outside so couldn't hear a lot... a few of the ladies prompted me which was great.
I'm at a point now where I'm very open about it and explain to people how I may need help, it's taken me 4 years to get there tho before I would shy away

I have severe tinnitus in both ears and it was confirmed around 12 years ago that I have hearing loss of the higher tones. Sometimes if someone's voice is at a certain tone, I really can't hear them, and that's been going on for at least 16 years. I don't wear hearing aids but have thought about requesting to see an audiologist again over the last 3 or 4 (I know, and covid hasn't helped) years because I struggle more and more, and I feel so embarrassed at asking people 3 or 4 times what they've said. Like someone else said, it's smiling and nodding and just hoping I'm smiling appropriately. I don't lip-read well, but sometimes it helps just watching someone's lips to decipher what they are saying. 3 or 4 years ago, my main consideration of hearing aids was to try to deal with the tinnitus, not the hearing loss, but now I just think I need help. I'd love in ear aids, but can't afford them.

I shall lurk in this thread, if that's okay? I'm not HOH but DS 12yo is severely deaf (auditory neuropathy), having failed the newborn hearing test. He wore aids to about the age of 5 but we never really knew how much they were helping as his ASD/SLD means that he doesn't respond to normal cues anyway. At the age of 5, he worked out that he could remove and throw his aids across the classroom when he became tired of all the class sounds being amplified; so we decided not to persist and to concentrate on other forms of communication instead.

In a few weeks' time, we'll be returning to Audiology for a checkup and new moulds, with school 1:1 and his ToD planning to carefully introduce the aids for just short bursts and specific activities - to see if he notices a difference when doing this close work. We'll do the same at home, and hopefully we can take it forwards from there ...

I have otosclerosis too and started to gradually go deaf when I was 23. It was so hard with babies and young children. The school gates were hard, but you just have to do your best, make friends and explain about your hearing loss. I only had one hearing aid for about 15 years, then I had an operation on both ears, a stapedectomy, and got two HA. Both were life changing for me! I got a little bit of hearing back, and the two HA were much better. I am severely deaf and can't hear anything at all without aids, so they are very important to me, and I would be lost without them. I learned sign language and so did my two children, that was a good help and still is sometimes. I work at M&S and with the masks it had been very difficult, I wear a huge badge to say that Iipread and ask if they can remove their mask. Some do, some don't. It is so tiring processing what people say and following conversations, you need to be on your top game. Going out socially with people you don't know is difficult and the onus is on my husband to help out. At first I lost a lot of confidence and felt very isolated and frustrated. Gradually, over the years I have overcome this, and now I am very upfront about my hearing loss, no longer ashamed. I'm not bothered about people seeing my hearing aids, whereas at one time I would have died if anyone saw them, ha ha ha. It's lovely to know that there are others out there in the same situation, going through the same things. You do feel alone and that nobody really understand how hard it is, this thread is great for that. Let's hope we can all share experiences and advice.

I definitely get the whole workout classes thing. It's annoying when you have to lie or bend in a way that means you can't see the instructor nor can you hear them properly so you end up popping up to look every few seconds!

I have NHS Phonak too. I'm intrigued so many of you have Bluetooth-enabled aids! I went through Access to Work last year to get some receivers and a Roger Pen to use at work. I do like being able to hear phone calls and work calls through my aids. But how much simpler if I could just get Bluetooth ones!

Mind you, though, I haven't been to Audiology in ages because it's hard to get an appointment at a time when I'm not working. So they may offer them to me the next time I go. I need new moulds at any rate.

I don't mind wearing my aids too much, but I do find people's lack of deaf awareness astonishingly awful. I've had my aids about 7 years but have only just started to stand up for myself if I can't hear for some reason.

It's hard, isn't it? People are so aware of visible disabilities and so shit when it comes to invisible ones like a hearing loss.

I'm very much enjoying this thread. It's lovely to be able to talk to other adults with hearing losses!

Thank you all for replying!!
I'm hoping Mumsnet will see there's a few of us on here that may benefit from our own area?
It's definitely great to get some support in what can feel like an isolating world

I want a Bluetooth hearing aid!!! It sounds like pure luxury

However, google says they aren’t available on the nhs yet

I’d love a hearing loss thread too. I’ve got moderate hearing loss in both ears, cause unknown. I’ve been given the NHS Phonak hearing aids but I find wearing them quite uncomfortable, mask wearing and glasses and hearing aids is a whole new ballgame!

I had Bluetooth ones last year, unfortunately it available on nhs in my area.
The ability to answer a call straight to my ears and watch things on my phone directly is great!
I'll admit I'm still finding new things about the
Though.
I do find them a lot comfier than my old nhs ones

Hello! I don’t officially have hearing loss. The doctors, when testing in a quiet room and a sling me to hear single sounds, find I can hear just fine.

But I struggle. I can’t pick our speech if there is background noise (even on TV, I have to have subtitles). And I have to hide it at work which makes conference calls hell.

They said it was possibly a problem with my brain (processing) since the ears and connected equipment work. Sigh.

I wear hearing aids in both ears. I've had them for about 2 years and it's made a huge difference. I'd also love some Bluetooth ones! Can't justify the cost to go private just for that though as the NHS ones I have work very well (Phonak Nathos). How do the Bluetooth ones work with speaking into the phone, do you just have to hold the phone near your face so that people can hear you?