Hearing loss, vertigo, new to hearing aids and overwhelmed... Help?

Do you still get attacks Kate or are you mostly attack free? Cheers Kev

Hi, Kev. Mostly attack-free, thankfully. Occasionally (maybe a couple times a year), I feel like the world is going start spinning (a strange shift that happens when I move my head), and I take 5mg diazepam, sleep for a couple hours, and wake up as if nothing happened. Guessing it’s not the Meniere’s. Stay well!
-kate.

Hi Kate, yeah I will occasionally get something similar but nothing like the intensity of a full blown Meniers attack with tinnitus off the scale, the room spinning, severe vertigo, the walls and ceiling moving in and out to meet me, I had to close my eyes… At its height I would be bed bound for up to a week with cluster attacks, then I would be okay for a week or perhaps 2, then the tinnitus would start to build up and get louder and louder, an attack was now imminent and I would just lie down and ride it out which could be hours or sometimes days later, I felt mentally and physically drained after an attack and very wobbly on my feet, my hearing would be very distorted and I had a strange habit of walking into walls especially in semidarkness for some reason… Most likely my balance? There wasn’t much respite with the constant worry/anxiety of when the next attack would appear, anxiety and stress being a major trigger it was a vicious circle… I feel fortunate and blessed not having to live with that anymore with a very strong empathy towards anybody whom is currently experiencing anything like that. Take care and stay safe, cheers Kev.

Uf, you’ve been through a lot.
What I’m about to say won’t be easy to swallow, but I think it’s important that you know what’s ahead of you. I apologize in advance.

You have hard to fit loss per ear, and fitting them for one brain to get the information will be even harder. Any steep curve is tricky, and you have both steep slope AND steep reverse slope (that one is PIA on its own)
Add to that the fact that you have poor WRS (everything below 90 is considered poor, 40 is cochlear implant candidacy), which is used as a rough guidance what you can expect from the aids in quiet.

You first test was around 90s, that’s good. Second was around 80, that’s okish, but one has to be aware that they will miss some things. However, your last one is 55 and 75, which is… crap, to be honest. I have 70 in one ear and 100 at 60db in another and with them together without aids on average it’s less than 100, so my bad ear moves my good ear down. With aids it’s decent, but my main reason for getting aid for good/normal ear was to have similarly sounded signal for my brain to process because otherwise it was a mess. This is the information you need to grasp.

So, no matter the price, we don’t expect your brain to be able to give you back 90 WRS.
Idea of WRS testing is to see what your brain can decipher if we amplify the sounds, eg if HA will help and what are the limits. WRS scores are the limits.

Yes, if you have great brain and train a lot and have properly fitted aids, it is entirely possible that you’ll learn to extract more useful information than your WRS is now. But we’re talking months if not years.
So, don’t be angry if no matter how well fitted aids are nor how expensive they are, they don’t give you results you’d like to get.
Assume they won’t and work from there.
That means, be aware that any noise will mess up your comprehension, so mitigate it as much as you can: close windows, turn your back to the noise, come closer, use external mics if they help anything, lip read, ask people to pronounce clearer but not louder… you’ll see what works with you and DO NOT BE AFRAID to ask people to do that! If your common goal is to understand each other, you both will have to make some accommodations, and that’s fine, don’t feel shame, embarrassment or like you don’t have the right to ask for adjustments. You have!

Also, I’d say that it is valuable that you aid those ears from now on, and not rely on just one side.
However, since it will be hell of a journey, I’d suggest going with KS9 since you can’t get anything close by quality and usefulness for that price (they’re essentially phonak marvel 90). And start there.
Learning takes time, a lot of time.

Also, use TV connector for watching tv, and stream everything you can. That helps with adapting so much!

Also, I’d recommend digging deep into DIY and understanding how hearing works, how loss affects comprehension. Not necessarily for making own fittings (yet), but for understanding how it all looks like under the hood.

I know it’s frustrating, but it helps to be able to know with what you can work with.

That you’ve come here, was the best thing you did for yourself, trust me
I’ve learnt so much, I’ve come in peace with my loss, I enjoy my gadgets, I know my limits and I have zero issues asking for accommodation, putting mics on the table and what not. I want to comprehend what’s spoken to me, and I’m not ashamed to show it.
When I came here, I did have many issues in my head.
Nice people here taught me a lot of things, and when I’ve dug up something, I’ve shared.
This is awesome place to learn.

But, breathe, you don’t have to find a perfect solution in a week. You won’t. Accept that, start your journey, and use this great company you’ve just found.

Expect months, but every step counts

Your loss is hard, it will affect you hard if it didn’t already, but you’re not lost, and for hard days, we’re here

And obligatory c/p:

If you haven’t already, I suggest getting some basics through these two sources

best practices summarised by dr cliff

https://blog.valuehearing.com.au/news/must-hearing-aid-features

https://blog.valuehearing.com.au/news/do-i-really-need-expensive-hearing-aid

And they have article about listening in noise, also recommended to read.

Both sources have youtube channel if you like that media instead.

Edit: also, you asked MFI vs others. Yes, MFI aids use mic on the phone, and in noisy environments that’s an advantage. However, KS9 can handle some noise, but needs tweaking. And yes, KS9 are handsfree, they utilize mics on the aids. For quiet, they’re working perfectly.

However, since they’re unlocked and can be DIY accessed, I’d highly recommend them as a first aid, because they’re great aids and dirty cheap compared with the ‘original’ (here in Germany, pair is around 5000+ eur). I’m not sure what other costco aids are unlocked, but phonak’s programming SW is considered among the best from all, between fitters, and from what I’ve seen, I can only agree. It’s logical, has bunch of hints all around, and definitely user friendly.

Wow, that is rough. I had a pretty mild version of MD, with very few attacks.

Just a bit of advice, there’s a LOT of bad info about it out there, some of it incredibly over the top. Dr. Google is not your friend on this one. If you’re getting info on it from the internet, make sure it’s a reputable site.

When I was first diagnosed with it, I looked at some bad sites that were positively hysterical. I bought into it and showed a couple printouts to my ENT, and the guy laughed at how inaccurate it was.

You should definitely see a doc about it. Just FYI, from my own experience that may or may not be helpful to you, I found that going easy on alcohol, caffeine, tobacco and especially stress helped keep in mostly under control. Good luck.