Apologies I will have to repost my post as I inadvertently deleted it… cheers Kev 
You have been through the wars of late, you have my extreme sympathy and empathy… As a former sufferer IMHO I would be inclined to say Meniers is a very high probability given your symptoms, a definitive diagnosis is not easy with regards to anyone suffering from Meniers like symptoms and getting any ENT specialist to actually declare/label as such is challenging, they sit on the fence a bit and in all truth it could be a wealth of other inner ear problems. Personally at the time of my diagnosis I got some comfort in being finally able to say “I have MD” although this does not alter the symptoms, nausea, vertigo, tinnitus, hearing distortion, dizziness, depression, sickness and accumulating hearing loss as every Meniers attack destroys your hearing very slowly but surely… Fortunately for me it burned itself out after about 8 or so years and it took most of my residual hearing with it, I can recall many times during my severe Meniers attacks, praying that all my hearing would disappear if only the sheer noise noise of the tinnitus, the dizziness and vertigo would go with it… I was left with severe tinnitus (which I think I cope with) slight balance problems and severe/profound hearing loss and I consider myself most fortunate and indeed lucky to be free from the other Meniers symptoms… Good luck and best wishes Kev.
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@MDB @kevels55 Thanks for your thoughts and information. Any experience with hearing aids beyond KS 9.0 that might handle my situation? Does Costco carry more advanced ones (assuming they will work with my situation) and is it cheaper to go there? It sounds like I might need to go the more expensive route through the hospital. Being a major hospital and teaching center, they would probably have more experience with situations similar to mine. I am fearful of the cost, but I guess I will have to make it happen if it can restore any quality of life.
The KS9 should be able to handle your loss. The challenge is getting them adjusted properly. I also wonder if you having permanent tubes in your ears would make them leery of working with you. It could be worthwhile asking if Costco has any audiologists at your store or in your general area. I would agree that a teaching center is likely to have more experience.
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I would agree with MDB your loss is complicated and these are notoriously difficult to fit, but not impossible! Although I live in the UK and unfamiliar with Costco Kirkland 9.0 tis essentially the Phonak Marvel, I wore the Marvel 90 13’s for 2 years and they are excellent aids, I upgraded to the Paradise 90’s last week and they seem crisper with a slightly different sound with multiple Bluetooth connections as opposed to a single Bluetooth connection with the Marvels, I am unsure if Costco have the Paradise alternative as yet? I am so far happy with my upgrade, but it will take a week or so for me to access them correctly, but so far so good. Good luck, cheers Kev
Costco will probably be fine for the hearing aids, depending on the fitter. But I’d suggest going to the hospital audiologist for the first assessment until you get a handel on what’s actually happening with your ears.
Doesn’t sound terribly Menieres-y to me.
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The more I read about features, the more it overwhelms me. I was leaning towards an MFI model as I have been very happy with my Air Pods Pro switching connections to various Apple products, but then I read that MFI HAs do not support handsfree calling. Do they still offer noise cancellation for the mic through the iPhones?
Now, I feel like having one with multiple Bluetooth connection capabilities might offer the best solution as I can connect to my laptop for a Teams call without a streamer. I have read that Bluetooth still has a noticeable delay at times compared to MFI and that LE 5.2 is only a possibility in the latest models possibly sometime this year via an upgrade. Are there any models with MFI and Bluetooth or is MFI with a Bluetooth streamer the closest you can get to that? Are there any Bluetooth models that have very low latency with no perceived delay in audio from phone calls?
What models have you all used with multiple iPhones and a laptop with minimal issues of switching between? Maybe I should go with something cheaper now like the KS 9.0 and save up for something better next year after Bluetooth LE 5.2 is out and stable? Or if Costco gets a newer model this year like speculated and they let me trade-in mine to upgrade, that would be a possibility.
Thanks
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cyberbeatless - I am sorry that you are going thru this. For Meniere’s, there is not a test that can confirm you have it; only tests to rule out other causes. Vestibular testing etc.
For me, it is Meniere’s. Diagnosed about 10 years ago. I think my hearing was close to yours at the time (much worse now, each attack takes away more of my hearing). I was able to get fitted with a Costco aid. It is about finding a good fitter that can listen to your feedback and interpret what you say to adjustments on the programming. I have a Costco aid still - in between did trial with an aid from a great audiologist. Reality is that my Meniere’s loss is just not the easiest to fit; isn’t the “normal” hearing loss pattern. So with that - for me - about finding an aid that helps understanding that it probably isn’t perfect.
With Costco you get a LONG trial period so you can truly use and confirm if it is a good fit for you.
Good Luck
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I’ve always felt that it made more sense going for value (like KS9, possibly KS10) than for going for "top of the line, “bleeding edge” purchases. I think it’s going to be really tough to find a “for sure” LE audio compatibility anytime soon, and even if one does, it still won’t connect directly to older devices. I think purchasing a Costco aid while the horizon becomes more clear makes perfect sense. And don’t expect “perfection” with KS9 on Zoom calls–I’ve read of definite issues.
@nicmger @MDB Thank you both for more insight and feedback. I think I will try Costco initially due to the return policy and price. I just got to get an appointment schedule and move forward in this new world of hearing loss. Thanks again!
I was diagnosed with bi-lateral Meniere’s 30+ years ago. I just wanted to comment that diazepam (i.e., Valium) is the only antivert that controlled my vertigo. I needed 5mg every couple of hours to remain vertical. Betahistine wasn’t available in the US then, but I was able to source it internationally and believe that, taken regularly, it was a huge help in controlling symptoms.
All good wishes.
-kate.
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@HOHKate Thanks for your feedback. Sorry to hear about your problems, but I am glad you found ways to manage them. I feel like the Betahistine has already made my tinnitus better and that is a plus as it was pretty extreme after the last episode. I will ask my doctor about Diazepam if I have worsening conditions. Have a good day.
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Hi HOHKate, I am glad you got some relief via medication… Unfortunately for me at the time I was one of those folks whom are unable to take the medication proscribed for vertigo and sickness, if there is a side effect/allergic reaction to any medication then I get it, perhaps it was psychosomatic who knows, but the medication made me ill and I felt the cure was far worse than the symptoms, was Betahistine the one you put under your tongue, if I recall correctly? Cheers Kev.
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As I recall (and no promises about my memory), I took SERC (the brand name for betahistine at the time) with water. But when I could no longer get SERC, I instead used a homeopathic drug (VertigoHeel) that was taken under the tongue. I’m only now weaning myself off it…
Cheers back, Kev.
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I can answer this based on my current version. They are made per order by the compounding pharmacy and are in the form of small capsules. They are meant to be taken with water. I have seen no mention of putting them under the tongue for the version that I have. Cheers
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Might have been something else then, I used to get some tiny yellow tablets and I was told to place them under my tongue during a Meniers attack, every time I took them they made me ill… Tis about 16 years or so since my last Meniers attack. I wish you well cyberbeatless, hopefully you have something less obtrusive than Meniers. Cheers Kev.
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.
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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.
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