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

Sorry, that quote was the NICE guidelines quoted by the RNID - link now attached!

rnid.org.uk/get-involved/campaign-with-us/take-action-if-nhs-ear-wax-removal-services-arent-available-in-your-area/

For those that don't want to wait for crap NHS trusts to get their arses in gear though, this is expensive but quick if you can afford it/want to pay - our local spec savers charge £55 for one or two ears and there is no charge if there is no wax. Much cheaper than our micro suctioning companies locally!

(Sorry if you guys already know all this, ear wax has been the bane of our lives for 20 years)

Our audiologist said condensation in the tubing or any build up in moulds (my DC wear BTE aids) is the main culprit. We used to use the tiny blowing pump thing (what's the word?) to clean and dry tubing every single night, and clean moulds. Otex was recommended by our audiologist too (and they also recommend warm olive oil to soften wax) . We also have a "dry box" to store the cochlear implant in at night and these are great for hearing aids too.

The thing that minimises wax build up for my DC is actually not wearing their aids for a few days (and using Otex) if it's starting to build up. Obviously that makes life trickier but if they have a weekend where they have nothing planned they just don't wear them, and when they lived at home we just used sign. We also have flashing/vibrating smoke alarms, that was one thing that was a big worry for me, and the ones that have moved out have them installed too.

I know it must be hard not to wear aids for a while if you're a full time wearer, I don't actually know what it must be like personally of course so don't want to blithely recommend stuff I have no personal experience of as that is very annoying it's just what has helped my DC.

Yes, I get wax build up and dry, flaking skin in my ears. I pay to have them microsuctioned at specsavers but you have to book weeks in advance.

We used to use the tiny blowing pump thing (what's the word?) to clean and dry tubing every single night, and clean moulds.

We call it a puffer. Not sure if that's what everyone calls it!

Hi all may I join you? I've had unilateral hearing loss for 3 years or so, only mild to moderate, which suddenly progressed to moderately severe overnight recently. I'm due steroid treatment to see if it helps, but I'm finding it all exhausting at the moment, and struggling with tinnitus too.
I did wear a hearing aid, but need to go back for adjustments now, so can't hear anything on that side at the moment.
Nice to get support and advice from people who get it!

As an almost lifelong aid wearer, can I say that I went through a time of having the most horrific ear canal infections - very low grade, but hearing aid dispenser could see pustules when he looked in, recurrent courses of antibiotic ear drops etc. The shells of the in-canal receivers were flesh coloured & supposedly 'hypoallergenic' - but oddly enough, once they agreed to replace them with clear (see through) ones, the infections just stopped. And only came back when the aids went off for repair for an unrelated fault, and came back with the 'standard' shell on. So they went back again...

I'm nickel-sensitive, don't know if that's relevant. But if anyone's struggling with recurrent canal infections with an in-canal receiver, I strongly suggest trying a clear shell....

@ToDuk - I never said hello back to a fellow ToD!

And we call them puffers too!

I had just one ear checked at my audiology appointment last year due to wax in the other. So I haven't had the other checked at all and I need new moulds. I can't afford private so I'm going to try and beg my GP too. I've always suffered from wax and had glue ear as a child (not sure if my previous ENT issues are a reason? I think I have funnily-shaped ear canals which probably doesn't help).

I've only just found out my doctor doesn't do ear syringing anymore!
I went for hearing aid fitting (new ones as my current ones aren't made anymore so need to upgrade) today and one ear has so much wax he can't hook them up to calibrate them to my ears because he can't get past the wax. And also the new hearing aid whistled so much (apparently because of the wax even thought my current ones don't whistle when there's wax) that it's unwearable
The person in ENT who could unblock etc was off. So he had to tell me to go to my doctor's or get them to refer me to someone who does it.
I rang my doctor after to find out they don't do it anymore! And the only way would be the doctor referring me to ENT (no idea how long that will take...)
Or paying for it at Specsavers...

I suddenly started struggling with hearing in my right ear about 3 years ago and put it down to fluid in my ear from yet another sinus and post nasal drip. My gp recommended a decongestant hoping it might be fluid in my middle ear.

It made no difference so I had micro suction and that too made no difference. I had a hearing test and have significant hearing loss. I recently saw my consultant who said I've got permanent hearing loss in my inner ear. He had my bloods done for antibody testing and I had an MRI on Monday to waiting on the results of that.

Rang doctor to get referral for ENT for ear syringing as per receptionist at my GP. Got a really rude doctor. But they said they can't refer to ENT for this. Started saying how long have you been wearing hearing aids and why as you're so young. I'm not that young but I said lots of people wear hearing aids from a young age.
I used the Otomize a few days cos I got the outer ear infection back the infection's gone but the wax is there (as per the hearing aid person). I made the mistake of telling her I used Otomize she said no I said I get recurring outer ear infections. I don't think she believed me. I've had them enough times to know what the symptoms are.
I'm a bit mad
And I can only get it done at Specsavers now and I can't get new hearing aids fitted till the wax is gone 😞

I'm a bit upset

How do you cope as parents when you’re deaf?

Dh keeps snapping at dd because she’s giving me attitude that I genuinely don’t hear. I then snap at dh for snapping at dd, to find out she was being snarky and rude.

It’s making things difficult

@purpleme12 your experience really closely matches what I go through with ear wax. I now have to pay £50 to have microsuction before every audiology appointment as if I don’t I will likely be turned away as they can’t see my inner ear.

It’s so frustrating to have to pay that sort of money to access a NHS service- when the money doesn’t even go to them and instead lines the pockets of specsavers.

@Soubriquet I also struggle with this. I am always reminding mines that they need to look at me when speaking to me and not shout from another room! The youngest is too young to remember and the oldest has now figured out she can get away with being cheeky if she mumbles.

[quote kymeraray]@Soubriquet I also struggle with this. I am always reminding mines that they need to look at me when speaking to me and not shout from another room! The youngest is too young to remember and the oldest has now figured out she can get away with being cheeky if she mumbles.[/quote]
Ugh. Same

The 6 year old keeps forgetting to speak louder or look at me when he’s speaking and then gets frustrated because I’m not answering him. Because I can’t hear him

It’s the 8 year old who’s worked out she can mumble things or be snarky and knows I can’t hear her and takes full advantage of it

I'm a GP Receptionist so wear a mask and so do patients in the surgery. We are behind a glass screen so I find it difficult hearing people anyway.

I tried wearing my hearing aid the other day but what with office noise, a colleague who has a loud annoying laugh, doors banging, chit chat, wearing a telephone headset, mask on a string around my neck, glasses only needed for close up and long hair I quickly gave up wearing it.

I have suggested to the Practice Manager a microphone for Reception but I'd be very surprised if they buy one because I've been told it cost £1,200.

Google Access to Work grant. They csn claim money for special equipment for people with disabilities

@themuttsnutts thanks. I've just applied in my name. See what happens.

@Soubriquet I definitely know what you mean about the children. My hearing loss can be a source of frustration for us all. I don't tend to wear my aids in the house which doesn't help but I find it overwhelming in the house with them in I prefer my silent bubble. The children try to talk to me from another room and get frustrated when I don't reply, I can sort of hear them it sounds like a rumble but I have noidea its aimed at me or what they are saying.

Maybe I should wear my aids in the house

I wear them in the house if people are talking to me a lot or if it's a busy time eg school morning

We generally have family amusement at my mishearing of things, and it's rare anyone gets the hump with me or tells me to put my hearing aid in.
This week I had a difficult dentists appointment because of the hi tech masks they wear, and had to get my partner to go in to a vets appointment when it would usually be me, because I was concerned I'd miss important information.
Does anyone else find that sometimes people think you're joking or being over dramatic when you say you have hearing loss, because in their mind I guess you don't look old enough?
I find it a bit infuriating like they think I'm attention- seeking!

Oh, definitely!

Yes I'm only in my 30s so alot of people say things like ooo it's not obvious etc. Exactly, thats why it's an invisible disability!

I've started wearing a sunflower lanyard recently for mask exemption (I know we don't have to wear then now) but got fed up of the judgemental looks at my maskless face. Masks tug on my hearing aids so much it made my ears bleed but I put up with it when masks were a legal requirement but have given up now so it's nice to be pain free. I did try the behind the head type rather than ear ones but they fell down

Flamingo40 - I can’t thank you enough for starting this thread - I am very deaf but have a hearing aid - all of these posts have been invaluable - my mental health and teaching career have been severely impacted by my deafness - mainly because of lack of openness re our deafness - lack of awareness re our limitations and a definite lack of empathy from people with ‘normal’ hearing -

Great thread. I'm not HoH but my DH is, he's had 2x aids for 2 years now.

I'm naturally very quietly spoken so it's been an adjustment for both of us. I was also heavily pregnant with our first at the time of him first getting aids. He then hated wearing them as it was too loud compared to what he was used to, so that plus a screaming baby made for some tense times in our relationship! Thankfully he has some better aids now (not sure the type,but have Bluetooth and are NHS) so is wearing them a bit more.

We both really enjoyed and resonated with the couple on Race Around the World where the husband had aids and they both explained the impact on their lives...no longer enjoying busy pubs /going out in large groups / picking specific seats in restaurants etc.

I'm getting better at knowing when I need to translate/repeat for him, without checking constantly or just assuming he's fine. It's a fine line between being useful and annoying,which I totally understand but can be hard to judge when it's not something you've experienced. I'm actually a bit jealous with his ability to turn the noise down at soft play though!