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

I’ve got age related hearing loss. It started with tinnitus in my left ear and I got a NHS behind the ear aid . I loved the fact that I could hear but the soreness nearly drove me mad and I could bear to wear it only a couple of hours at a time.
Has anyone else had this sort of problem — sounds mad — it’s the little tube between the back of the ear piece and the bit that fits in the ear that causes the pain — I returned to audiology and they lengthened the tube but that made no difference. I’m not conscious of it actually rubbing the front of my ear but the pain is rather similar to what you get when you get a blister from a shoe rubbing .
My hearing has deteriorated and I’m waiting for a home visit from an audiologist to fit me with a pair of aids now because my mobility makes hospital visits difficult.
Am I the one strange person on the planet with this problem? Has anyone any advice what to do about it?

You just get used to it! Sometimes when I first get ready, I hear the rustles and it's annoying, but you just get used to tuning it out. Sadly. Only a ponytail prevents rustling ime but it's not my favourite style.

@Cindie943811A If you've had the tube a while, it could have become hard, which can cause rubbing. It's also possible the angle of the tube inside the mould isn't quite right, or that the bend of the tube has been put too close to the mould/dome so it's bending into your ear. A change of tubing usually sorts it out. I occasionally get this after I change my tubing (so I have to do it again 🙄).

Thank you for the link @thegreylady

New here; but not new to hearing problems! Diagnosed with Hyperacusis 10 years ago and then several years ago, started to struggle with background noise. Had a hearing test done and was told that I can't be hearing impaired because I'm sight impaired. (?)

Got a second opinion as I knew there was something not quite right. I do have a mild form of hearing loss due to the medication I'm on. Also have Auditory Processing Disorder.

Don't wear hearing aids because for the most part, I can manage. It's the background noise, not being able to hear where noise comes from and peoples' speech (I have a lot of problems with certain accents) that I have problems with.

@ihavespoken i have bilateral moderate to severe hearing loss and bilateral tinnitus, it’s been like this for at least 20 years now (I’m 68). My mum was profoundly deaf by her mid 70’s so I fear I’m headed the same way ☹️
I first noticed I had hearing loss at 18, I’d had a severe ear infection whilst on holiday in Spain as a child and that caused scarring of my ear drum. Unfortunately my parents wouldn’t take me to a Dr there.
Since having mild Covid in April the deafness and the tinnitus have ramped up - lockdown was a particularly horrible time as face masks pretty much ended conversation when I was out, I rely very much on lip reading despite two hearing aids. I no longer go to social events as I cannot hear what people say and crowded venues are a nightmare.
I’ve recently gone private for new aids - there’s a 24 month wait for NHS audiology here, I collect them on Tuesday next week.
I’m so looking forward to having Bluetooth, wearing bulky earphones over my aids isn’t a good look when out!

I have received my two new hearing aids today. They are Phonak aids and I have volume control, Bluetooth, a button for background noise and one for music. They are wonderful. We decided that the mould l already had was the best fit for the left ear (l have had two mastoid operations on this ear) and a bulb for the right. I can use the Bluetooth on my phone and iPad but have not found out how to use it on the TV. Any help would be greatly appreciated. I have applied for a disabled person’s railcard - all that is needed is photographic evidence of the front of the battery booklet. It means that I can get 1/3 off the price of a ticket. I am feeling very positive about the whole experience.

@Violinist64 did you get your Phonaks from the NHS or private? Would love to get Bluetooth with my next set but last time I was due an upgrade (NHS) they weren't stocking Bluetooth aids.

@Violinist64 good to hear you're loving the Phonaks! Can I ask about the disabled person's railcard-I have NHS Phonak aids as well and look as if I'm eligible from the website, but what do they mean by battery booklet?!? Clearly I am being dense-they don't mean a photo of the battery pack do they?

When you got your hearing aids, you may have been given a small booklet? That's what they're asking for.

@BellsaRinging and @TigerRag l had them from the NHS. They want a photo of the front of the book with your name and address on the front.

@Violinist64 and @TigerRag I just got handed my aids, instruction book and batteries at the hospital appointment so don't have a booklet with my address on. If I need new batterie they just send them out if I give them a call! Do you have a booklet that they sign when you get batteries or something? Sorry for the confusion and thanks for the previous answers!

I wrote my name and address on it when it was handed to me. I get the impression you could write this at any time and presume it is in case you lose the book so that it can be handed back safely to the hospital or you if found. This is what you need as evidence for a physical card or you can have one as a digital download if you upload a passport style photo of yourself on the application form. It seems to be very little known even among audiologists. I found out about it through the RNID. Good luck.

For the railcard, you can ask your audiologist for a brief letter or a copy of your audiogram. It will be accepted. Many audiology depts. don't give out battery books now - I haven't had one for over 30years!

Thanks guys! I'll try my audiologist!

Yes this - I just got my Railcard and it was super easy. I requested a copy of the most recent audiology report of my hearing loss (basically anything that says you qualify for hearing aids is what you need). I went to the online site for railcards and uploaded a screenshot of the report that had my name on it. About four days later I had an email through to say the railcard had been approved and that was that. I got a three year one so I wouldn't have to do the process again so soon. Brilliant.

Has anyone had a Cochlear Implant in mid-life? I've been hearing impaired since early childhood but it's extreme now. I have never successfully used hearing aids and worry the stress of hearing will be too much.

I posted on your other thread. Ask your audiologist if they can put you in touch with the local CI group and look on fb for UK CI groups, there are several and everyone are welcoming and willing to talk about their experiences.

I don't have another thread, I'll search for another one. Thanks for the advice.

sorry @Straysocks

www.mumsnet.com/talk/_chat/4580298-cochlear-implants-vs-hearing-aids

Do look for the CI groups on Facebook though for advice from many CI users.

@daisychicken oooooh, thank you.

I've lost one of my hearing aids!
Can you just ring the hospital and get a new one?
Will they charge me?
I'm really scared now

Brave souls all of us with this invisible but profound impediment - x

@purpleme12

Our hospital does replace them but charge £100

Oh god 😓😓😓
I can't believe I've done this 😢😢😢