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Any recommendations - significant loss

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Yeah @Bimodal_user, that is exactly what I did with Metformin, started off on one tablet a day, then upped it to 2 x 500mg per day, after a couple of weeks… I am also back swimming, 3 times a week, I only do a thousand metres per week, in total, it’s more of a maintenance fitness routine, sauna 3 times a week also, I am not trying to get fit at 68 years of age, more of slight improvement in my general fitness levels, but I am starting to feel the benefits of feeling slightly more fitter, also my mood, is much improved, perhaps the sauna has helped with my overall wellbeing? Cheers Kev :wink:

It’s worth the effort. evaluation would gives you much information about your hearing loss, for example, Word Recognition Score in quiet unaided, etc.

I am going to try to get an appt set. Pretty sure my unaided score would be zip. LOL Will also find out next week if my next “regular” hearing test can/will include the wrs.

Sorry to hear the tales of Woe on here with Menieres. This is also my disease too.

My bad ear is beyond 85 on some frequencies but still better than that on lower ones.

I use Phonak Infinios with UP receivers and I have found them pretty good.

I hear pretty much nothing without hearing aids but can live a pretty good life with them. I guess at some point I will need Cochlears and I have friends that tell me they are marvellous (Med-El).

Where are you based?

In reply to @kevels55

You sound the same as me @Kevel55. My Menieres kicked in in 96. My Tinnitus started in 2000 and has never left. Nystagmus and Vertigo Drop attacks were the worst, so scary at the time. Luckily for me my employer was super and so understanding and I think I actually adapted and became a better manager for the uncertainty. I remember my boss saying I know you cannot help when you are unavailable and we will always support you but how can you setup your teams so they can deal with your random absences and that changed everything for me in the way I worked.

He was a brilliant boss and I have just told everyone about it since then, never hid anything. At my worst I was having upwards of 50 days off a year but thankfully, touch wood the vertigo has gone.

Dark is hard, you need to 2 of three systems to work for balance, eyes, ears and posture so with dark you are down to one and thats why its impossible.

In reply to @threluja

I lost my lower register first…but of course not as bad as it is now. :slight_smile: I am in the US, in Virginia. Because my hearing in that ear can fluctuate even daily because of the Meniere’s I don’t bother testing too often - since wouldn’t want to change if it was just a bad (or decent) ear day. What would be awesome is if my could have two almost completely different programs that could reflect those differences. But I am told that the different “programs” are more like noisy environments etc vs completely diffferent program. I am going to pay my stupidly high copay for a specialist to let me know if I am a candidate for . At least it would help me understand options.
I think another challenge my audi has faced is what receiver can fit in a mold in my ear. I am told my canal is pretty narrow so the 85 with custom mold has worked with not being terribly uncomfortable. The 100 they had to create a new mold and while adjusted several times is really uncomfortable, so tight it feels like my ear is stretched out - by hours in the day actually is sensitive to the touch.
On a positive note, I don’t have extreme vertigo attacks as often any more so something good.

In reply to @threluja

I had 4 drop attacks while walking; and two that happened when I was sitting one second normal and the next I am jarred violently sideways. (Was at a company lunch the 2nd time with a new group of co workers. Great intro! LOL) But similar to you, I was just upfront with it; had an understanding boss and group of coworkers that took my bad days/episodes in stride. Definitely would have been even worse and more stressful if I wasn’t blessed with those folks.

Edited

In reply to @nicmger

Mine fluctuates too, you can have different programmes setup for different days but I think they are ultimately based on the same hearing loss pattern. I will ask my Audi, he is brilliant. Matthew Allsop from Hearing Tracker. Looking at your your good ear is excellent, I would definitely look at . My good ear is better than my bad but I am completely deaf without hearing aids. I cannot be woken with an alarm clock, I have a strobe and vibrating pad fitted for fire alarms (luckily this is free in the UK).

I self program and I think the most obvious answer for fluctuating hearing loss is to have two pairs of aids setup slightly differently. You can buy second hand aids on eBay for very good prices and it’s quite fun to learn.

My hearing is complex though, it’s like my ears work together when either is compromised (I had Menieres in both) it’s a lot harder to hear. I generally just use IM / email on these days and tell people I can’t hear. With modern work people are very understanding and I work from home. I realise I am very lucky.

As for molds, the UP receiver in the Phonaks in custom molds are pretty good. I have narrow canals too. They shouldn’t hurt, that would be awful.

In reply to @threluja

Thank you @threluja… I think it was around 93 when I first heard the words Meniers Disease, my Doctor back then, Dr MacKay an absolutely brilliant physician, said to me he suspected, I had MD, I had no idea what MD was, suffice to say, it was a very gradual learning curve… I pottered on for another few years, before MD started to become more active, and ultimately more debilitating, looking back now, the episodes of MD probably lasted 10 or 12 years from the initial diagnosis, but it was extremely mild for the first 4 years… TBVH, it is a period in my life, I have tried to erase from my memory! Basically nowadays, I am fine, vertigo is almost nonexistent, on a rare occasion, I may get some dizziness, this is usually self induced, by jumping up too quickly or moving my head too fast, or occasionally coming out of a very hot sauna, and going under the freezing cold shower… :upside_down_face: My balance is however shot through, especially in the dark or low light… My hearing has stabilised, with no distortion nowadays, my left ear is now profound across the board, with several dead spots, (my needs updating, but I never got a copy last Monday) with some frequencies “no response” to pure tone testing… My right is severe with “no response” above 6khz, I am pretty deaf, but I regard myself as most fortunate, I am a good lip reader & I can sign in (British Sign Language) I have several Roger Assistive Listening Devices (’s) if it is important, I can hear with the assistance of a Roger ALD… If we cast our eyes around the world, it isn’t too difficult to see people whom are less fortunate than ourselves, sometimes we have to be grateful for what we have, as opposed to what we haven’t got! In the quiet, I hear pretty dam good (I have always been aided) when considering my loss… But, background noise is the killer of any contextual information, but who said life was fair… On a more positive note, I am still shooting some good Pool, I won the Western Isles Open Pool Competition a fortnight back, twas £500 first prize, but at 68 years old, I am doing okay against these young guys :joy: I won 9-5 in the final :8ball: Cheers Kev :wink:

Wonderful @kevels55 I whole heartedly agree that the path to happiness is focus on what we have rather than what we have not :slight_smile:

I need to get up to the Highlands at some point, my son toured up there for 4 months this year and told me how beautiful it is. He based himself out of Invershin and then after finishing work toured round to Skye. Sounds like you have life pretty good to me :grinning:

Edited

Thank you @threluja… I know Invershin, always a place of interest to me, tis not far from Shin Falls, when the Salmon are running it’s quite spectacular to watch them leap! Your son stayed near Bonar Bridge, on the Kyles of Sutherland, one of my favourite fishing spots for Sea Trout & Salmon, I have caught a lot of fish in that area… Yes, Skye is particularly stunning, as is most of the Northwestern part of Scotland, the road to Applecross is both majestic & spectacular in equal measure, and the Applecross Inn’s Seafood menu is absolutely wonderful! If you get the opportunity, do the North Coast 500, it is absolutely stunning scenery… I consider myself very fortunate to live in such an area of outstanding natural beauty, and the natives are usually very friendly… Cheers Kev :smile:

As the other ear is good a setup seems a logical first step. You also can get the benefits of high tech features that way too, speech in noise, speech locator. With SS loss here too, I tried CROS with Phonak Lumity and that was crazy good!

@user715 said:

As the other ear is good a CROS setup seems a logical first step. You also can get the benefits of high tech features that way too, speech in noise, speech locator

I would be careful with a sudden decision to spend much money on . This may turn out to be an unnecessary expense if the OP qualifies for a unilateral .

However, it is always worth a try.

@user715 said:

With SS loss here too, I tried CROS with Phonak Lumity and that was crazy good!

Did you have separate verification when you purchased CROS?

I get an updated hearing test (just need one) in about 8 days. Still need to reach out to see specialist availability for eval. Then need to find out if my audi that sold me by Oticon More will agree to do adjustments on aids not sold thru her. I am considering trying a pair of used cros. I know I can find/get an Oticon Cros PX + Real1 for around $1k. If I can find an audi (mine or a different one) to pay them to program it would give me a good start. Could always upgrade later if need be. Anyone have any idea what a typical US fair charge would be for programming?

@nicmger said:

Anyone have any idea what a typical US fair charge would be for programming?

It can be difficult to find a fitter/audiologist to program aids bought somewhere else.
Before buying the set up make sure you have someone lined up to program it.

Good luck

In reply to @nicmger

I’ve seen people reporting $125 to $1250, so there’s a wide range out there that could be really low if the provider doesn’t have a rational pricing structure set up and really high if they are trying to discourage those services.

As ever, I’m not involved in clinic pricing so can only handwave about it. “Fair” would proably mean something like cost of service (I’d read $200 USD hourly average, but that was back pre-pandemic and would vary a lot depending on your location) + cost of disposables (those little probe microphones that go in your ear are one time use and priced as you’d expect for medical devices :roll_eyes:) + cost of specialized equipment ( machines are 5-20k and that’s probably budgetted out across a decade or so of clinical time, factionally, but there are also annual calibration fees) + follow-up service + cost of taking on some degree of responsibility/risk of device damage, particularly if it is old.

In reply to @user715

@user715 said:

I agree, small steps especially when were talking about a lot of money. Surely CI is more expensive than CROS setup!

I migh be not very accurate - I considered covered fully by national healthcare (as in Poland) or insurance. In my country isn’t refunded.

So in that situation I think it’s better get CI evaluation to make sure one don’t unnecessarily spend money on CROS.

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