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

Hearing aid makes no difference when I put it in either

Update from me/us: Took DS (12, ASD/SLD) to Audiology today ahead of re-introducing BTE aids. It turns out that the moulds supplied pre-Covid that seemed too big, actually now fit him perfectly - they just need inserting carefully as his ear canals go up as they go back. He hasn't worn aids for about seven years so it was interesting to watch his face when these were switched on - he could definitely pick up more of the sound around him. His ToD will start working with his 1:1 at school on determining specific activities where he can wear the aids to see if they help him focus and follow things. He tolerated the aids at home this evening for about five minutes (not bad for a first attempt), he calmed and seemed alert for ambient noise. Small steps!

That's a great start @JenniferAllisonPhillipaSue

I have aids on the NHS that do the same Bluetooth connection and controlled digitally using an App on my iPhone. I had them new at the start of this year they are brilliant. My old ones were phontak 7yrs old and had a lot of white noise these Signia ones are really good. The clarity of sound is far better, and I do all my work videocalls direct using the Bluetooth streaming I love them.

@SkiRun0077

I have aids on the NHS that do the same Bluetooth connection and controlled digitally using an App on my iPhone. I had them new at the start of this year they are brilliant. My old ones were phontak 7yrs old and had a lot of white noise these Signia ones are really good. The clarity of sound is far better, and I do all my work videocalls direct using the Bluetooth streaming I love them.

I have NHS signia and just can't get on with them. They are my first pair and I've had them since Feb or march.

They are far too loud I knew this would happen at the start but not this long!

They aren't Bluetooth so can't go on iPad etc with them in to watch things.

They are also really sore and feel flimsy in my ears. One is the lifetip and one is a mould but not of my whole.ear just my canal.

One of my children also has aids and I tried there's in and they are far more comfortable 🤣 but audiologist won't give me proper moulds and the thick tube like my child has ☹️

My mum is severely deaf , it drives us all crazy . Is there anything that can done aside from hearing aids these days ? She has had private and nhs ones .. are there any that are better and could actually help her hear properly ? She has enough money to pay for them but loses them a lot so chooses to get nhs ones which don't seem much cop tbh !

Weedsorwishes I buy my own thick wall tubing from Connevans. Know that doesn’t not help with moulds but would Specsacers do you just moulds?

I have a question about hearing aids & music , if you please? I discovered about 10 years ago that I wasn’t surrounded by mumblers, but that it was my poor hearing !
While my low & mid frequency hearing is good , my high frequency hearing is terrible leaving to me filling in the gaps in conversations & misunderstanding frequently. I also have tinnitus. I was told back then that hearing aids might help, but I wasn’t ready for that step.
I’m now coming round to the idea of it but I’m nervous about music. I love music, I perform regularly (bar during covid) and ironically I have “a good ear”! I pick up harmonies easily etc.
Will hearing aids change how music sounds to me - in a bad way?

It hasn't to me
If you're managing now without them then I can't you being disadvantaged by getting them

So happy to see this thread. I have moderate hearing loss, probably age related and have worn hearing aids since my early fifties. I could have probably done with them sooner but I was too stubborn to admit I needed them. They made a massive difference and I realised how much I had been missing out on socially.

I have Bluetooth phonaks atm, I got them privately from Specsavers and they are pretty good. Not infallible, I find the signal can drop in and out but they have made phone conversations possible again.

@Weedsorwishes

Has anyone found that when they got hearing aids it seems as if there hearing went worse?.not sure if my hearing is getting worse or I'm just getting used to them?

When I don't have them in I feel I'm really missing out and really struggling. But it seems worse than before I got them. Is this just my brain getting used to hearing properly with them in and I notice the difference when I take them out. I've had them about 6 months

Also I feel a bit overwhelmed still when I'm wearing them so I don't wear them in the house. It seems so noisy with them in like my brain is too switched on if that makes sense?

Can anyone relate?

Really try and make the effort to wear them alway. I think it makes a massive difference in the long run.

When I first got mine about 7 years ago (after several years of needing them) my audiologist was very firm that I should wear them my entire waking day, not just when I was actively listening to things. She explained that it would help my out-of-practice brain get better at filtering out irrelevant background noises and processing the important things. Apart from the occasional morning when I forget to put them in I have stuck to that.

7 years on, regular tests show that in real terms my hearing has continued to deteriorate but I have found that I am actually hearing things better. One day last week I accidentally went out without them and warned my companions I wouldn't be able to hear well. At the end of the morning we realised I had actually followed every conversation and hadn't misheard anything once. Obviously outside factors helped - there wasn't much background noise and their voices/accents were familiar and at a pitch that's easy for me but I also think it's down to my brain now expecting to hear so it is in the habit of processing sounds. Before I had hearing aids, unless I made the conscious and tiring decision to follow a conversation my brain was literally 'tuned out'.

I see the opposite with my mum who got hearing aids last year. Despite being told to wear them all the time she only puts them in if she wants to listen to something, a bit like only putting reading glasses on when she wants to read. IMO this means they only seem to work when she makes the effort to listen -if that makes sense. So her hearing aids work perfectly in the audiologists consulting room where she is consciously making the effort but not in a social event where she isn't solely focussed on that task.

None of this is backed up by any science or evidence, it's just my observations so I'd be interested in other peoples experiences.

@Practicebeingpatient oh this is not my experience at all
While I agree that it's best to wear them often if you've got them I certainly don't think my brain filters out irrelevant background noises at all
And I haven't got them in I really struggle

Reading through this has actually made me cry, I feel so alone with my hearing loss but I'm clearly not the only one.
You may be the people that can help me, I have moderate mid-range hearing loss in both ears (cookie bite loss?) I have two hearing aids (Octicon synergy NHS), had them about 4 years and can still not manage to wear them longer than about 10 minutes without getting a very bad headache due to the pressure feeling building up. They magnify every sound so much so I can hear normal speech it's dreadful. Pre-Covid they were adjusted and checked several times but I still can't wear them.

I am missing so much. I can't hear my Dad at all as I he must be the wrong pitch for me. I rely on lip reading more than I thought.

Any suggestions?

Go back to usually and ask to try a different aid?

I struggled a lot with my first aids for 5yrs+ the white noise was overwhelming and exhausting I just couldn’t get used to them. Eventually they were changed to different brand and Bluetooth ones and what a difference the clarity of sound is so much better. I can filter the white noise effect much more and as a result I wear them for about 8hrs now when working. I do still take them out when in ‘home’ mode (I work at home), to rest my very tired head plus I use headphones for watching TV with my family instead of aids. I’d suggesting trying a different model if you can and your struggling.

Replying to Gunnersgold - my mother had hearing aids from her mid 80s but fear she never got the hang of them - and by the end of her dementia days was dropping them in her tea...I've worn aids from 2 onwards (though only consented to full time use when terrified wouldnt pass 11+ interview. Used to hate Christmas parties which were spent being made to help old people with their hearing aids "This little girl manages so why cant you...) so fear it is an age thing - unless you can pique her curiosity as to what shes missing?

Christmas parties being made to help old people with their hearing aids?

@Memom

Reading through this has actually made me cry, I feel so alone with my hearing loss but I'm clearly not the only one. You may be the people that can help me, I have moderate mid-range hearing loss in both ears (cookie bite loss?) I have two hearing aids (Octicon synergy NHS), had them about 4 years and can still not manage to wear them longer than about 10 minutes without getting a very bad headache due to the pressure feeling building up. They magnify every sound so much so I can hear normal speech it's dreadful. Pre-Covid they were adjusted and checked several times but I still can't wear them.

I am missing so much. I can't hear my Dad at all as I he must be the wrong pitch for me. I rely on lip reading more than I thought.

Any suggestions?

Cookie bite is what I have- I got mine privately .. I think mine are programmed just to amplify the missing frequencies in the “bite” - I had assumed all would be like that, but could it be that yours are amplifying all frequencies? That would definitely be distressing for me so I can understand if it’s bad for you. Obviously they can’t be programmed perfectly but it’s only really high-pitched sounds like whistling that are unpleasant for me with my hearing aids in. Mine are Widex aids if that’s any help. I do think that HA can’t be the total answer and you do ideally need friends/family to understand they can be part of the solution by looking at you when they speak / letting you know they are about to start speaking and giving you the chance to “tune in” before they launch into their talk!

I have been getting myself into a real tizz with my hearing recently. I have had 'Cookie Bite' hearing loss in my left ear since the age of 12. In the mid frequencies, this falls into the severe range. The loss in the low and high frequencies is milder.

I am now 50 and, in the past three years, my hearing in my good ear has started to deteriorate in the high frequencies and this is when I got hearing aids for both ears - I managed OK before that.

When I first got the hearing aids (NHS Signia), they were actually pretty helpful and gave me a confidence boost. I felt more switched on, more extrovert and found that I could contribute to conversation more fluently.

Unfortunately, over the past year or so, somehow, my good ear has deteriorated again and the hearing aids were not as good as they had been. I was issued with new hearing aids (GN Resound) and I just can't get on with them. The left ear is OK. I have low expectations of what an aid can do but it gives me some localisation. I can hear people calling me from the left and talking to me, although I cannot understand speech at all - I just hear sounds and it stops me from getting run over!

However, with my right ear, although I clearly have a lot more volume, speech sounds totally unclear and I sometimes think I hear better without them so long as I am close enough to a person to hear them speak. I also cannot hear the TV at all.

I am currently trying to manage with just the left one in because I am getting used to having surround sound and quite like it but, with or without the hearing aid, I find I cannot follow a conversation anymore and it's getting quite depressing. It seems to have turned up everything except the pitch I need to hear and I am wondering if it is because the high frequencies are too damaged to aid properly. I have a repair appointment on 11 November. The audiologist suggested they may need adjusting.

Could it be just that the aids are crap or is it my hearing? Would I be better paying from private hearing aids or is the technology the same?

Hi, I have severe hearing loss in my right ear my hearing aid was my saviour as it reduces the persistent tinnitus which drove me mad for the first two years .

Oh I'm not sure about this
This sounds hard
I hope someone can advise
I'm having to go without one hearing aid at the minute and a partially blocked ear on top of that and I know how much that's affecting me. As well as a massive difference to my hearing (more than I thought) I, like you said, don't feel half as confident or as able to join in as before

@themuttsnutts

I have been getting myself into a real tizz with my hearing recently. I have had 'Cookie Bite' hearing loss in my left ear since the age of 12. In the mid frequencies, this falls into the severe range. The loss in the low and high frequencies is milder.

I am now 50 and, in the past three years, my hearing in my good ear has started to deteriorate in the high frequencies and this is when I got hearing aids for both ears - I managed OK before that.

When I first got the hearing aids (NHS Signia), they were actually pretty helpful and gave me a confidence boost. I felt more switched on, more extrovert and found that I could contribute to conversation more fluently.

Unfortunately, over the past year or so, somehow, my good ear has deteriorated again and the hearing aids were not as good as they had been. I was issued with new hearing aids (GN Resound) and I just can't get on with them. The left ear is OK. I have low expectations of what an aid can do but it gives me some localisation. I can hear people calling me from the left and talking to me, although I cannot understand speech at all - I just hear sounds and it stops me from getting run over!

However, with my right ear, although I clearly have a lot more volume, speech sounds totally unclear and I sometimes think I hear better without them so long as I am close enough to a person to hear them speak. I also cannot hear the TV at all.

I am currently trying to manage with just the left one in because I am getting used to having surround sound and quite like it but, with or without the hearing aid, I find I cannot follow a conversation anymore and it's getting quite depressing. It seems to have turned up everything except the pitch I need to hear and I am wondering if it is because the high frequencies are too damaged to aid properly. I have a repair appointment on 11 November. The audiologist suggested they may need adjusting.

Could it be just that the aids are crap or is it my hearing? Would I be better paying from private hearing aids or is the technology the same?

Sorry - I don't know if private is better or not.. I wonder how we could find out.. I have Widex hearing aids which I got privately for cookie-bite and they are great but I only have moderate hearing loss in both ears.

It's not like hearing aids are household brands, is it, so I find it impossible to know if some are considered "better". We should try and entice an audiologist onto the thread somehow!

Yes it's hard to know these things

New problem. Early morning plus late night equals hearing aids running out of charge.
It's not often but bloody hell!!

Hi everyone.... after starting this thread life became really busy so I've not had much chance to check in with you all.
It's so nice to see it's still going and people are supporting each other.
I'm off to a deafvibes coffee morning local to me this weekend, I'm nervous but it will be nice to meet other people who understand.
Also been looking into
Learning BSL. My word it's ridiculous how much it costs! Maybe my next stop is to campaign for free BSL lessons for those of us who may need it.
My children want to learn with me so they can help me should I in the future need to communicate in this way, they're also thinking it'll help their chosen careers.
My audiologist has referred me to ent too so I'm hoping for clarity on why I'm deaf?
I think I've reached a point where instead of just muddling along I want to know more about why, and my future. So I'm starting to research a bit more.

I'll check in to let you know how the coffee morning goes..., in the meantime carry on using this thread to support each other,
It makes me so happy to see so many of you on here