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Original poster

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

986 replies

flamingo40 · 04/09/2021 17:45

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

OP posts:
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Jojobees · 04/09/2021 17:53

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!

BuckyBarnesArm · 04/09/2021 18:02

Hello! I'm 45 and have been wearing hearing aids since I was around 33 due to otosclerosis. I think my hearing loss is classed as severe (I can barely hear anything without my aids). I have nhs digital Phonak aids, which are mostly OK but I do dream of one day getting private aids! They're just incredibly expensive. What aids do you have @flamingo40? Smile

FictionalCharacter · 04/09/2021 18:23

I have a severe hearing loss and I’d be interested.
@BuckyBarnesArm NHS hearing aids are the same as the ones sold privately, just with different names. If your current Phonaks aren’t good enough for you maybe you need a different model?

Original poster
flamingo40 · 04/09/2021 18:27

Thank you for taking the time to reply!
Any one is more than welcome. Maybe we can get info and advice from each other.
My current hearing aids are phonak m-90 R

I've just had them a year and they've certainly been life changing.
I do however love nothing better than taking them out at night: it's so peaceful.
There's no one in my immediate circle who is hard of hearing so I can often find it isolating:
I don't think people understand how frustrating and tiring it can be

OP posts:
ThisBeautifulLife · 04/09/2021 21:51

Hi all, I have moderate to severe hearing loss due to otosclerosis. Began wearing 2 hearing aids (nhs) 11 years ago. 3 years ago I had surgery to have bone anchored hearing aids (BAHAs) and the difference it has made to me is unbelievable! My hearing with them is close to normal, which I never thought I would experience again.

Thisladyisforturning · 04/09/2021 21:57

I'm also a hearing aid wearer but struggling with wearing a mask. Putting it on and off pulls my HA out and have lost one this way and thrown one across the room this way too.

TazTheFairy · 04/09/2021 22:04

@Thisladyisforturning we've found ones that tie round your head and neck have stopped DS flinging his hearing aids.

BuckyBarnesArm · 05/09/2021 08:31

@flamingo40 I completely agree re: how tiring and isolating it can be. Luckily, I'm a bit of a curmudgeonly anti-social bod but the times when AM out in busy or noisy restaurants or pubs are excruciating, especially if with people I don't know well. I just miss half the conversation! If I'm with DH, and we have a quietly spoken waiter, I have to ask him to tell what they're saying. I do a lot of nodding and smiling and I have totally perfected the "raptly listening despite not actually hearing what your saying" expression. I know I should ask people to repeat or speak up, but after the 2nd or 3rd time, and I still can't make everything out, I just give up. One to one, or quieter environments are fine. It can be very difficult.

Original poster
flamingo40 · 05/09/2021 09:46

I'm very lucky that in a situation outside of the home if my husband is with me he takes the lead to help. We will tell people I'm hard of hearing now too. It took me years to do this as I used to get embarrassed.
Now I don't apologise for being deaf so much.
I used to hide my hearing aids as I was conscious. Now I don't care, I even had short hair recently and they're proudly on show.
But there are times it gets me down.
The lack of understanding, and if I don't hear sometimes people ask if I've got them in or switched on? That annoys me.
Yes I have but I will never hear perfectly they just help me hear better.
Being profoundly deaf is exhausting at times

OP posts:
Deereamer · 07/09/2021 21:29

I lost a good portion of hearing recently (within the last 3 months). I’ve been told it’s unlikely (although not impossible) that it will return and hearing aids won’t offer me much benefit. The worst thing for me is not being able to hear my little boy talking to me whilst we walk. I’m constantly having to ask him to repeat himself.

Hellocatshome · 07/09/2021 21:37

I'm 90% deaf in one ear, full hearing in the other. I used to.wear a hearing aid as a very young child but got very distressed with it on starting school and the Dr at the hospital told my parents to just let me learn to cope without. I do have subtitles on the TV and if I'm not sitting on 'the right side' I cant hear a word they are saying. I cant lip read completely but it definitely helps if I can see someone's mouth when they talk. I wonder if anyone here is similarly irked by Jade in Casualty. In the last episode I watched someone turned away from her while they were talking and she couldn't hear them because she needed to lip read but then in the same episode she could hear someone over the phone and someone wearing a mask perfectly fine.

Mischance · 07/09/2021 21:42

To take off your mask without flipping your aids onto the floor, take the mask loops off over the top of your ears first.

My aids are a joy in that I can hear the birds sing - it is wonderful!

Sometimes when I am at a classical concert I turn my aids right down, choosing a mellow sound - it is great to have the choice.

daisychicken · 08/09/2021 19:21

I'm profoundly deaf with hearing in one ear at 95dB. I use a cochlear implant and have a hearing aid to reduce tinnitus.

I echo the pp tip on removing mask loops. I still get in a muddle when I forget though!

The lack of understanding is hard. I also find it difficult when people expect me to use family and friends as interpreters rather than make the effort / book a professional interpreter.

geogteach · 08/09/2021 20:06

My 20 year old is profoundly deaf with 2
Cochlear implants. My Dad ( and all his family) have lost their hearing as they have aged and I fully expect it to happen to me too.

peridito · 08/09/2021 20:24

I don't hear sometimes people ask if I've got them in or switched on? That annoys me

Ah! Not just me then ! My partner does this ,bends down to see if I'm wearing them,I find it so patronising .
And as for expecting me to hear when he's got his back to me walking down the corridor/in another room/suddenly introducing a random
topic when I'm concentrating on something ...

I'm not profoundly deaf .and my aids don't help much .Though they do muffle the tinnitus !

Original poster
flamingo40 · 08/09/2021 20:50

Today someone actually understood and I appreciated it so much.

I've been in my new job 3 months and my boss is lovely, today she said that it must be so tiring everyday to have to process what people are saying.

I could of cried that someone had thought about how it affects daily life
If only more people would

OP posts:
SuziLikeSuziQ · 08/09/2021 21:45

Ooh, good idea for a thread!

Nice to meet you all. I have a moderate bilateral loss (levels around 50dB) for an unknown reason. Had it since my early 30s and wear two aids. I'm also a Teacher of the Deaf.

Lots of what you've said resonates with me; my loss impacts my social life and I get frustrated at the lack of awareness etc.

LostInWales · 08/09/2021 21:54

Oooh, hello my people!

I'm another otosclerosis haver, been wearing aids bilaterally since my 30s and I'm 47 now. My mum very kindly bought me the ReSound Linx HAs a few years ago now privately and running them through my iPhone was life changing, listening to music and talking on the telephone again which I'd lost. Then I met an ent consultant about something different but he was really interested in my hearing and told me he could give me a stapedectomy on the NHS which could result in me regaining my hearing. I had it about three years ago and regained about 80% full hearing in one ear. Miraculous. Sadly covid has done for me having the other side but that's fine so I have about 50-60db loss in one ear and say 20-30 loss in the other (haven't got my charts to hand and never remember the details). Still a bit lost without my HA but not the complete world closing off issue it was if they didn't work in the past.

Have also managed to lose my HA due to mask pinging it into orbit though, thank goodness it was insured!

Original poster
flamingo40 · 08/09/2021 22:43

I'm so glad this thread is bringing some of us together.
I think it helps to talk about experiences and some of you are more knowledgeable than I am.
I found it was a case of you need hearing aids, here you go and I've pretty much been left to research things myself.
My upgrade to Bluetooth ones last year was far more informative but then Covid got in the way and appointments didn't happen. I am due a review so am hoping to get more information from my audiologist at that.
So I'll gladly take any advice or information.
Or even just share experiences, have a rant.
Whatever you like it's just nice to be in touch with people that understand

OP posts:
kymeraray · 08/09/2021 23:07

Wow this thread has made me quite emotional. I have had hearing loss for just over a year. Have had ent/audiology appointments but no further forward due to covid. I suspect it is otosclerosis but am having a hard time getting anyone to listen to me.

I find social situations so isolating. I was quite confident before this and now I find myself holding back and hardly following the conversation.

I had to go somewhere new last week where you had to be guided through by various people. I was nearly in tears at the end because I had no clue what to do or where to go- I couldn’t hear anyone!

I’m glad I’ve found some other people who likely face the same as I don’t know anyone else hard of hearing

ToDuk · 08/09/2021 23:14

Not deaf myself but I am a teacher of the deaf. Hello @SuziLikeSuziQ !

Great idea for a thread. Maybe MN would so a whole deaf section.

MissSmiley · 08/09/2021 23:25

My hearing loss is moderate but only low tones, same in both ears, they don't know what caused it and aids won't help apparently, still trying to work out why, not severe but a mystery really
I'm new to this, I knew it wasn't great but just assumed my ex was to blame as he's very softly spoken

MaidEdithofAragon · 08/09/2021 23:31

Hi all, I'm hard of hearing plus tinnitus. Wear phonaks. Find being deaf exhausting.

halfhope · 08/09/2021 23:39

I'm hard of hearing with two NHS digital hearing aids - would love a section dealing with hearing loss 😊

Walkacrossthesand · 08/09/2021 23:58

I'm in 👋
High tone (sensorineural) hearing loss identified when I was young, got away with a single aid until I was about 40, but my hearing has declined depressingly since then.

I have Resound Linx aids like someone else up thread - I got them privately, does anyone know if the NHS offer them? I love the Bluetooth capability, so mobile phone output comes straight into my ears.

I've given up going to the theatre as I just can't make out what they're saying, and I miss a lot of the dialogue in non- subtitled films.

Whilst I do lip read etc, don't you just hate it when people mouth exaggeratedly at you as if that's how lip reading works? News flash - it's not! Just make sure you're facing me and don't put your hand over your mouth, I'll do the rest!