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

Thanks @orinocowho.. I feel very uneducated about all this .

I was tested for and given hearing aids by another NHS contracted out service and I don't know why but I sort of don't have 100% confidence in them ,probably unfounded .

I have what I'm sure is common in that high pitched and sharp sounds - crinkling plastic ,crockery against metal or similar - are magnified and can be quite alarming .

I don't find my HA a great help ,though they do mask the tinnitus a bit .

@peridito I don't know for sure, I'm prepared to be corrected, but around here (Derbyshire) it feels that HA are a "one size fits all"'with the NHS and if it's not right for you, well tough. DM was given NHS HA and doesn't wear them, she just doesn't get on with them, it seems such a waste.

If you can, it's worth a chat with an independent audiologist- I know it means paying but certainly mine does all kinds of payment plans.

I used to have nightmares that I was somewhere, and people were talking but I couldn't understand what they were saying, and they were getting louder and more aggressive towards me as I told them I couldn't understand. Since having my HA they have stopped, I feel more confident.

I can also connect them to my phone and listen to radio or Spotify as I'm out and about, without fear of missing out on anything as I can vary the balance so I can still hear what's going on!

Absolutely would be great for this to be in general health!
How do I ask for it to be moved?

@flamingo40

Absolutely would be great for this to be in general health! How do I ask for it to be moved?

I think if you click on "report this thread" you get to message MNHQ?

@KleineDracheKokosnuss

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 have this difficulty. It was diagnosed over 20 years ago as "Obscure Audtiory Dysfunction" but I suspect it is now "Auditory Processing Dysfunction". Interestingly DS1 has associated diagnoses of ASD, Sensory Processing Disorder and Dyspraxia.

I was told at the time that hearing aids would only amplify and not help, but this was early days in digital aids so I don't know if that may have changed for the better.

My hearing deteriorates when I'm tired/ stressed and I'm easily distracted by background noise. I often struggle following group conversation as by the time I manually fill in the gaps, I miss the chance to interject.

Screens/ masks are a bloody PITA. I always knew that I lipread because I always noticed when I couldn't (e.g.people that mumble and don't move their lips) but losing 2/3s of a face is really unsettling and rather than have that "interference" of loss of facial movemenf plus muffling, it's easier to look at something random and focus 100% on deciphering sound. It's much harder when someone isn't "following a script" so the response isn't predictable.

I do often zone out when it's too much to listen. Big group dinners are hard work and I've had many tedious ones with DH's family where some voices (with a tendency for dry conversation) dominate and it's impossible to converse with people with lighter voices. (They're annoyingly teatotal too!)

I suspect my tinnitus was caused by my history of ear infections as a child/ teenager. I remember being aware of the hissing and rumbling by 9. I've had a couple of perforated ear drums from infection too.

If hearing aids could help, I'd gladly try them. My best friend at school used hearing aids and radio mics and I'll happily use anything that enhances life and it's great that whatever kinds of aids that help people througn life have lost so much stigma in the past 20-30 years.

I am thinking about getting the whole family on a BSL course as my hearing has gone from moderate to severely deaf and it's causing a lot of frustration, especially in places such as the beach a d swimmy pool.

Can anyone recommend a good course?

We're moving this very helpful thread over to our General Health topic at the OP's request.

@NameChangeEightMillion, thanks, that's a really interesting post. Very illuminating.

Thank you Mumsnet!!
It will help so many of us

@TheABC

I am thinking about getting the whole family on a BSL course as my hearing has gone from moderate to severely deaf and it's causing a lot of frustration, especially in places such as the beach a d swimmy pool.

Can anyone recommend a good course?

You can do Introduction to BSL courses which are short. I would recommend doing Level 1, though, as it then builds and you/ they will cover a lot over the course of a year.

Availability of courses varies depending on where you are. If you're anywhere near SE London then a place called Appa in Lewisham is amazing (I did Levels 1 and 2 there). I've never tried online courses; I imagine glitchy screens can be really frustrating for signing.

I wish BSL was more widely taught as standard. I've always wanted to offer BSL training for places like retail, libraries, surgeries etc. As I've said before, the lack of Deaf awareness I've come across in life is shocking.

@Mumoblue

I’ve been hesitant to post because I don’t wear hearing aids, even though I do have hearing loss. I went to the doctors a few times to have my hearing tested but I keep getting told it’s not bad enough yet to have hearing aids.

I always feel like I’m not deaf enough to call myself properly hard of hearing but I’m not hearing enough to have it not impact my life. I grew up calling myself hearing-impaired but apparently some people find that offensive?

The masks and screens during the pandemic really made me realise how reliant on lip reading I am to boost my understanding on what people are saying.

I used to say I'm hearing impaired. I currently work for the Hearing Impairment team at my local council. So it is in use! I never found it offensive, personally, but I've heard some people do. However, I wouldn't say I'm deaf, either, and I hate the term "hard of hearing".

So I now say I'm partially deaf. I gets the message across as people hear the deaf part and it makes them take it in a bit more, I think. It is tricky, though, for those of us who are neither hearing nor Deaf.

Hi. I'm hearing impaired. Had a severe ear infection age 3 (in 1979) and I get fluid buildup behind my ear drum which stops it vibrating so I am 95% deaf in one ear. My eustachian tube is scarred so even if I have grommets fitted (had this 3 times) after they come out the fluid builds back up and I'm back to being deaf.

I don't like my hearing aid so I don't wear it. I do need to see people's mouth to hear them properly and I'm finding I need subtitles more and more often now I'm older.

I have awful tinnitus in my deaf ear which I hate.

Glad to join this thread. Thanks for starting it 😁

I just say that I am a bit deaf

Yes I also go for a bit deaf as well

I think I feel more than a bit deaf, so partially works for me!

There is also 'deaf enough'. I am definitely deaf enough to need assistance/alternative way of doing things. Think there is a body of writing/thought behind the term.

For years I used to say I'm getting over a cold and my ears are blocked. I was embarrassed to say I'm deaf.
I wish the stigma wasn't there.
I now openly say it with no apology.
It's taken me a long time to do that though

Does anyone also suffer from build up of ear wax? I’ve had an awful time trying to get this done at the GP. There’s currently a campaign by RNID if anyone is interested

Yes I do in my right ear however this build up of ear wax seems to turn into an actual outer ear infection every time 😭

I’m the same. Constant cycle of build up of wax- olive oil- otomize for infection- pay for private micro suction only to go through the same two months later.

I thought I'd read somewhere that using olive oil is now considered to be unhelpful? Increases the problem ,sets or something ?

The NHS website still recommends olive oil, and so do our audiologists. But not if you have a ruptured ear drum or anything like that.

Mine are awful @kymeraray both ears completely clogged and ear drops only seem to make it worse. I'm going to beg the GP for microsuction today as I can't afford to pay for it.

@StuntNun I can’t afford it either. I’ve begged and begged my GP but they won’t budge. I have now emailed my MP about it and they have contacted my local health board on my behalf.

Reading this has infuriated me a little as the services seem to vary so much area to area - our local trust will always microsuction ears of hearing aid users - you have to go through the audiology service not GP though. (I love watching this and am disappointed now my DC are old enough to go alone ).

Seriously though, the RNID campaign on this and I have attached their web page. It may be worth quoting this to intransigent GPs or audiologists?

We believe that ear wax removal should be provided as set out in the NICE guidelines, which state that providers should:
“Offer to remove ear wax for adults in primary care or community ear care services if the ear wax is contributing to hearing loss or other symptoms, or needs to be removed in order to examine the ear or take an impression of the ear canal.”