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

Rubbish typing - I dislike beige aids due to my childhood aids and a body worn radio aid type device!

Hey everyone 👋 joining in as I've worn bilateral hearing aids for 20 years and have moderate - severe loss. Needed them when I was in secondary school really but refused to use the analogue ones because they were rubbish. But got digital ones when I was 19 and wow, life changing. My hearing got steadily worse up until my mid 20's and I was also diagnosed with Menieres disease around the same time. Used to be really self conscious about my aids but in the last few years I've started wearing my hair tied back properly and not caring who sees them. Also try and be much more upfront about being deaf so that people don't just think I'm ignoring them! It helps a lot.

I have sensorineural deafness and it's always bothered me that no one knows why I started going deaf so young. I was borderline all through primary school and when I was 11 I got tinnitus and started to go more deaf. No idea why and no consultant I've ever seen could tell me why either. Now at 37 and having menieres, a whole symphony of tinnitus and a few other frustrating health issues I'm beginning to think that I have some kind of genetic defect or something. But I think I'll probably never know really.

I wear hearing aids. I have severe hearing loss in one ear after a riding accident and then later on my other ear started to join in. The tinnitus is really annoying, as are the itchy excema ears (thanks for the tips on that). Masks are really annoying, particularly when worn by someone standing behind a thick screen. I often ask people if they wouldn't mind removing their masks. The other day I was trying to order some drinks in a coffee shop and couldn't understand a word the poor girl was saying.

Anyone got recommendations for where to get a knitted band with button on for the mask wearing I’m fed up of pinging off my aids and have lost one as well when it pinged off

I’ve just found a charity one on EBay I’m a sew er not a knitter but just remembered I’ve got a knitting wooden frame thing I will try making a couple

I got this from Amazon. Came in a pack of 5. I also do 12 hour shifts nhs with a mask on and 2 hearing aids.

realised BSL question hasnt been answered. Spotted this online course
www.citylit.ac.uk/courses/introduction-to-bsl
but its £199..there are various free beginner courses online though. Hope that helps someone.

Sigh, I forgot to wear my hearing aids for school pickup this afternoon and it was so hard, made me realise how much I need them and how much I struggle without them (only had them since Feb)

Couldn't hear the teacher doing handover with all the playground noise

Then
I had to keep stopping to get my son to look at me while he spoke so I could lipread him and I answered then we carried on walking ☹️

Just got these from Etsy. Only worn them around the house but plan to wear them out tomorrow.

Then on a Friday plan to wear my hearing aid to work for the first time, wearing these masks. Work in a healthcare setting, so always taking masks in and off, and wearing behind-the-ear masks makes me pull the hearing aids out.

Sorry, couldn’t post the picture so here’s the link.

mask

@Weedsorwishes

Sigh, I forgot to wear my hearing aids for school pickup this afternoon and it was so hard, made me realise how much I need them and how much I struggle without them (only had them since Feb)

Couldn't hear the teacher doing handover with all the playground noise

Then
I had to keep stopping to get my son to look at me while he spoke so I could lipread him and I answered then we carried on walking ☹️

Ah that sounds really hard and upsetting 😞

I can't get my new hearing aids fitted till wax is cleared from one ear, (hospital said when I went to get them fitted). Off I went and put olive oil in in preparation for them to dewaxed. Went to Specsavers (cos doctors wouldn't help). They said it's got outer ear infection so that needs clearing first. I put Otomize in, then went have to Specsavers to get them dewaxed if still needed. He checked in my ear, said he can now see the ear drum and doesn't think I'd benefit from dewaxing. Ok brill I thought. Off I went to the hospital to get my hearing aids fitted.
Only for the audiologist to say he can't see my ear drum and my ear needs dewaxing!!
I cannot win!!
I now can't trust Specsavers anyway
Audiology referred me to ENT but they don't know how long that will take! Just to get ear wax removed so I can have something really essential fitted!!

@purpleme12

As local doctors no longer syringe ears, we’ve got a couple of private nurses who do it. Maybe worth asking your go surgery if they know of any.

I already rang the GP. That was how I found out they couldn't do it. It was a new doctor I'd never spoken to before. Who wasn't very nice

This is a great thread. My brother is deaf ( hereditary)& also has aspergers. I have also have hearing loss, but haven't gone down the hearing aids route yet. As NameChangeEightMillion mentioned the way people talk to deaf people is infuriating, as if they have learning difficulties. I hosted a question & answer forum at work where my colleagues were given free reign to ask my brother whatever they want about being deaf. It was a real eye opener & real food for thought. As my brother said "I'm deaf, not stupid "
He has recently upgraded his hearing aids & because they are so different to his old ones he has had to relearn everyone's voices. This is something you wouldn't even think of ( me included)
I think as my hearing gets worse if anyone comments I will say " Yes I have been tested & am I am deaf. I know who will feel more difficult

Hi guys, another question, do u have a regular periodic hearing checkups or do we have to request if we think we need it? This is for my DS.

I thought it was every 3 years but I am convinced it's been longer than that since we have been seen.

I was told only allowed them every 3 years. A big change from a child when seen regularly.

Wonder if there is a delay due to the pandemic? I had to wait over a year to replace a broken aid due to covid.

I was told by audiology every 3 years I think?
Although I had to ask that. No one would have told me to come back and get another hearing test if I hadn't asked. You have to remember how long it's been and sort it, they don't send reminders

Although if you think your hearing has got worse/your hearing aids aren't working well you can call and they'll see you or test you again

A year to replace a hearing aid, I was seriously worried when my DS lost his as I read somewhere that that can quickly lead to complete hearing loss (aka - use it or loose it theory). On a few occasions my DS lost his, we managed to get them in about a month.

@purpleme12, thank you for mentioning they don't do reminders, I think ours is quite overdue. I will be looking into it I the next few weeks.

YogaLite - my hearing loss is so significant that was not an issue for me. Thankful to have two again though!

I asked about repeat appointments when I get my hearing aids a couple of weeks ago. I was expecting there to be a follow up call to see how I was doing etc. Nope, nothing, and no mention of a follow up appointment to test the hearing. She did give me a couple of numbers I could call if I had needed to replace batteries, had questions etc.

I am shocked that where some of you live that it takes so long to get hearing aids replaced- especially for a child. I am a teacher of the deaf and I can send an email to our audiology dept if a child's hearing aid is broken or lost and there is usually a spare programmed and ready to collect in 24 hours!

As for regular checks- it depends on their age and level of hearing loss. Most of the under 5s I see are seen every three-six months. Older ones with stable hearing loss are more like yearly. Three years seems like nuts- what about the ear moulds? Surely even older children will grow out of them way sooner than that!

@Standrewsschool

I asked about repeat appointments when I get my hearing aids a couple of weeks ago. I was expecting there to be a follow up call to see how I was doing etc. Nope, nothing, and no mention of a follow up appointment to test the hearing. She did give me a couple of numbers I could call if I had needed to replace batteries, had questions etc.

There's no follow up calls no. However if you have any problems or if you think you're having trouble hearing or even hearing certain things then you can ring audiology and make an appointment. They can turn your hearing aids up and even programme them so certain things are turned up eg voices. I have to stress that you are not specifically told this, I only know as it was implied and so then I outright asked. I feel you should be told really. If in doubt, ring audiology to make an appointment.

@Beekindbeehumble, my DS hearing loss is quite significant and sadly progressive, that's why I was really worried that leaving him for too long without one would irreversibly accelerate the loss