Hearing loss and PMR ?

[simps999]

I had a hearing test yesterday and was very disappointed to find out my hearing has deteriorated quite a lot since my last test three years ago. I am now waiting for new hearing aids as I now have severe loss of hearing on the higher sounds in both ears Just interested to know if others have experienced similar issues with their ears since having PMR . I was diagnosed two years ago.

[piglette]

Steroids are sometimes used to help hearing loss. I am not aware of anyone saying they have affected their hearing, but I suppose it could be possible.

[Thelmarina]

I can’t see how old you are. However, what you describe chimes with what what I was told when I went for a hearing test yesterday. My loss, not as great as yours, is nonetheless to do with aging. I’ve been on steroids for 7 years.

[Charlie1boy in reply to Thelmarina]

Exactly the same with me. I was on steroids for nearly eight years, but I’m pretty sure aging is the culprit - not prednisolone.

[PMRpro Ambassador]

I think it is unusual in PMR - but it can be part of GCA, Has there ever been any question that you could have some degree of GCA or LVV (large vessel vasculitis) as that could affect blood flow to the ear region and, hence, affect the 8th cranial nerve what has been implicated as being part of GCA.

healthunlocked.com/pmrgcauk....

However - as Thelmarina says, aging can have a dramatic effect on hearing. My husband had been very hearing impaired as a result of chemotherapy in his early 40s but there was a relatively quick and noticeable deterioration in the higher frequencies in his mid 60s.

[MiniSpec in reply to PMRpro]

Regarding relatively quick hearing loss. My hearing was OK until around 5 years ago, when I noticed that I was finding it harder to make out what people were saying. I was 69 at the time, and had had PMR since I was 59, so I don't think it was linked to the PMR. Then around the time that Covid hit (2020) my hearing went into quite steep decline and has now settled into a situation where I find it much easier to use some form of amplifier for the higher sounds.

I didn't want to say hearing aid, as I have a pair, but I find the bit that goes into the ear canal is very uncomfortable and I can only stand wearing them for a few minutes at a time. I've asked around but no-one so far has been able to point me in the direction of hearing aids that sit outside the ear, so I've had to make up my own.

The kit I've cobbled together consists of a single small amplifier box that has a mic, and volume and tone controls, attached to lightweight hifi headphones. It looks crude, but it works, and whenever we go out to a show I have to wear it to be able to hear what's being said. However, when I'm at home I don't bother. Instead, I've connected the TV to a stereo amp and I sit with one of the speakers next to my chair.

I find that by adjusting the controls on the amp I can get much clearer dialogue than if I listen to people talking in the room with me. I think it has something to do with filtering out the bass frequencies so that I only hear the treble sounds from the TV, whereas talking face to face with the family I have to lip read to understand them.

[PMRpro Ambassador in reply to MiniSpec]

My husband's hearing aids were all singing all dancing and did all that - they hooked on the outside of his ear but did have earpieces - the tiny one with just a tube weren't suitable for his hearing loss. At home though he used headphones for the TV - mainly because I found the level he had it at intolerable, even in the next room!!!! He had always resisted in-ear aids as being uncomfortable - he got them on the NHS originally, no such option here so it was a private company and pay mist of the price but when fitted with them and told he must use them at least x hours a day he did comply and admitted they weren't actually that uncomfortable - but the ear piece was carefully fitted and adjusted repeatedly to get it right.

[MiniSpec in reply to PMRpro]

The ones I have hook behind the ear, with a small plastic tube that curves over the front of the ear and connects to the plastic tube that goes into the ear canal. Unfortunately, the last time I wore them was at a Fascinating Aida concert. At first they did help with hearing Dilly and the girls doing their brilliant comic routines, but after a few minutes they became so itchy I tried to take them out.

Disaster!!!! Both of the plastic tubes that go into the ear canals became disconnected from the outer bits. So then I had to sit and listen through itchy and slightly muffled ears to the rest of the concert. Eventually, when we got home my daughter was able to extract both tubes using a very small pair of tweezers, but it was painful for me, and after that I just put them away and haven't used them since.

What I'd like to get is something like Sony MDR-AS210 sports earphones (look them up to see what I mean), but hooked up to the small hearing aids that go behind the ear. That for me would be the best compromise. The Sony earphones don't go into the ear canal, but instead put the speakers directly against the pad of cartilage that is in front of the ear canal, and I find that works very well for me.

I have all the necessary bits, including the Sony earphones, but I don't have any way of doing the delicate wiring to join them all up. Perhaps I should advertise for someone to do the wiring for me? If they then work for me, they should also work for others, and who knows, it might be the start of a lucrative business? I'm sure I'm not the only one who cant tolerate the in-ear tubes on normal hearing aids.

[PMRpro Ambassador in reply to MiniSpec]

My daughter got those to use when running - loves them! I would lay odds noone has thought it worth considering - unaware of how many people do find hearing aids intolerable but is a briliant idea. It must be a similar concept to cochlear implants, transmitting through the bone. I bet there is a teenager out there like my husband was back in the day who would see the application and work it out. Or a developer at a hearing aid company - why not write to some?

[MiniSpec in reply to PMRpro]

Good idea! I may try writing to someone like Boots, or Hidden Hearing to see if they'd be interested in the idea.

[PMRpro Ambassador in reply to MiniSpec]

Not sure Boots actually make hearing aids, nor HH.

hearingaid.org.uk/hearing-a...

has the relevant info. I'd suggest contacting Siemens since I and a load of friends worked for them in their head office in Erlangen, Germany so I'm a bit biased! But I;d probably try the company behind this site - because they may have audiologists with the know-how to do the basics to try it out, you never know!

[MiniSpec in reply to PMRpro]

Thank you for the advice PMRpro. I'll see if I can write an email detailing the idea, and send it out to as many manufacturers as I can.

[PMRpro Ambassador in reply to MiniSpec]

Do let us know how you get on!

[MiniSpec in reply to PMRpro]

Will do. I've started writing the email, and once I've started sending it out I'll let you know what interest I manage to elicit from the various recipients.

[DorsetLady PMRGCAuk volunteer in reply to MiniSpec]

Maybe Specsavers as well...

[MiniSpec in reply to DorsetLady]

Don't worry, I normally get my glasses from Specsavers, so I'll probably suggest to them that they make up a pair of spectacles with the Sony type earphones and behind the ear hearing aids all connected together. I remember that Eric Sykes had special glasses that contained his hearing aids, so I know it can be done. It's just a matter of the right kind of marketing to let people know that such a system exists. I reckon they'd be inundated with requests for them.

[DorsetLady PMRGCAuk volunteer in reply to MiniSpec]

Sure they would...

[PMRpro Ambassador in reply to MiniSpec]

I'd think that a connector to attach an amplifier of some sort to the headphones like it is with a music source wouldn't be beyond the wit of (wo)man!!

[pmr_nikola in reply to MiniSpec]

quick look at amazon and it seems that Sony MDR-AS210 has wired 3.5mm connector. If you find small amp with same wired output, then you would just have to plug them in. Just an idea for you.

[MiniSpec in reply to pmr_nikola]

pmr-nikola, that's what I already have.

I'll post up some photos of the system I use at present, as it uses the Sony earphones and a single amplifier box. The trouble is that the box is heavy, and outputs mono sound rather than stereo. Furthermore, there's lots of wire dangling around to catch up in anything I go near. So I would like to see each individual earphone connected to it's own behind-the-ear hearing aid. That way there's no external wiring, and the items used are already in commercial production, so shouldn't take much modifying to connect together.

[MiniSpec in reply to pmr_nikola]

Here is a photo of my hearing aid set up, also showing the behind-the-ear units that I no longer use. As you can see, the Sony earphones should be easy to join to the behind-the-ear units, and would provide what I think is a good hybrid system.

Current hearing aid set up I use, versus the behind-the-ear units I no longer use.

[PMRpro Ambassador in reply to MiniSpec]

You'd think it's the sort of thing that would be so easy for a techy to assemble - and charge a small fortune for it ...

[MiniSpec in reply to PMRpro]

I agree.

As some would say, "a 4 year old child could do this!", so quick, find me a 4 year old child with their own soldering iron!

[pmr_nikola in reply to MiniSpec]

I am not sure that I understand your problem completely. If you use you amp and Sony MDR-AS210 would that be sufficient? Why do you want to connect behind the ear hearing aid to it?

[PMRpro Ambassador in reply to pmr_nikola]

Portability I imagine!

[MiniSpec in reply to PMRpro]

Correct, the lack of portability, combined with the long lead on the earphones means I have to be careful or it catches on anything and everything I go near. Also, the current amp box has an omni-directional mic, so it hears me much louder than anyone or anything else. Combined with that is the mono sound rather than the stereo sound we normally hear.

For instance, if someone clapped behind your right ear you'd automatically look to your right, but with my current set up I've no idea where the sound came from as I only have the one mic, and that's normally on my chest.

For those reasons I'm looking to upgrade to a behind-the-ear solution for the two amps (one for each ear and therefore stereo) while simultaneously doing away with the long lead of the Sony earphones.

[PMRpro Ambassador in reply to pmr_nikola]

See MiniSpec's reply to me above

[pmr_nikola in reply to PMRpro]

I see the issue... As an ex-engineer, this not just "re-wiring", it is a description of totally new product.

[PMRpro Ambassador in reply to pmr_nikola]

Fusion engineering ...

[MiniSpec in reply to PMRpro]

Here's a photo that I've mocked up showing what I think the resulting item might look like, although I suspect that if it ever reached the manufacturing stage, that the behind-the-ear amplifier would be incorporated into the section of the earphone that hooks behind the ear, rather than being a separate entity as it is shown in the photo.

Mock up of the external hearing aid design, showing the right ear unit.

[MiniSpec in reply to PMRpro]

Oh, I should add that I've just applied to register the design in the UK, but I won't find out whether it can be for around 3 weeks. However, I'm going to send out emails with the mock up photo, to give manufacturers some idea of the end product I'd like to see.

[PMRpro Ambassador in reply to MiniSpec]

I think it is a brilliant idea, I'm sure OH would have agreed!!

[whitefishbay]

Well I had major hearing loss in my right ear towards the end of my 5 year PMR journey but it was not related (but who knows - everything is related). Turned out to be an Acoustic Neuroma. Depressing but I am very grateful for my NHS hearing aids. Make sure they enable the bluetooth which makes talking on your mobile fantastic. Best of luck.

[Marypatmorgan]

I have noticed a marked decline in my hearing which can vary from day to day, thus I know it’s connected to my GCA which has worsened the tinnitus I had before I got both PMR & GCA.

[simps999]

Thank you all for your responses

Sounds like it is related to general ageing and also genetics.

Created a good discussion about hearing loss and aids !

[Golf-1]

I had very good hearing until developed hearing loss at about the time I was diagnosed with PMR in April 2022, whether it was caused by PMR, or Covid which I had prior to then, or the medication for PMR nobody seems sure about. Initially my GP tried treating with antibiotics, then Mometasone nasal spray then finally referred my for Audio tests.

I had the tests 6 weeks ago, ie- over 2 years after I first noticed the loss, today I picked up 2 hearing aids, 1 for each ear. I thought my left ear was OK but apparently, like you, I was missing out on the higher tones in both ears, I am also missing most tones in my right ear.

As I sit here typing this post, I have my 2 new presents in place and it sounds as though I have my head in a bucket, I am assured this will pass in about 4 - 6 weeks.

[simps999 in reply to Golf-1]

HiThank you for your reply.

Sounds very similar to my experience although I did have some loss of hearing before but it was manageable.

I also felt weird wearing the aids to start with but I am told you do get used to them .

I have just had to give in and accept as my family and friends were getting tired of having to repeat themselves !!

Good luck .