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

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All,

I want to start off by saying thank you all for all that you do for us suffering from hearing loss with lots of questions. It is truly commendable.

I have come across several forum posts here while researching hearing loss over the past months. I finally decided to take the time to signup and post here. I have read so many posts with several similar aspects to my hearing loss and issues. On one hand that is great and comforting, but on the other hand, it can be overwhelming with so much information to process. I will post my issues below and attach my audio charts. I welcome all feedback and helpful information.

Also, I would like to know if Costco would be able to handle my type of hearing loss and if their KS9.0 would be worth considering for my condition? My doctor says I should go to the hospital hearing center but they want to charge almost $200 for the consultation that insurance does not cover.

History:
I have had hearing loss in my right ear since I was a kid (well over 30 years) and had ear infections as a kid (tubes placed in the ears twice). My left ear has mostly been good and compensated for the right ear. My ENT doctor from years ago said he did not recommend HAs due to my left ear being near normal at the time. About 5-10 years back, I seemed to get yearly ear infections every spring (allergies). It would get to the point of having a noticeable decrease in hearing and sometimes soreness in the ear. My ENT doctor would prescribe me Ciprodex and antibiotics if needed. This continued and eventually they put in long term tubes to help with drainage. That doctor moved on and when my issues continued, I would just go to the Ciprodex to clear it up and my regular GP that was in the same building as the ENT doctor that left, would prescribe them based on chart history.

Fast forward to 2020… A year that saw COVID-19 devastate the world (I have remained safe from it :crossed_fingers:), multiple hardships, and new lows in my hearing (pun intended). Here is rough timeline/synopsis of my life since July/August of 2020.

Ear Trouble History Timeline 2020
7/2020
Still have both long term ear tubes.
Having some hearing issues. I had taken Ciprodex and my hearing was not improving.

8/25/2020
Saw new ENT doctor for hearing issues and my hearing was a lot better than the previous weeks by the time I got this visit.
Got a prescription of Prednisone for “as needed” due to hearing issues in case my hearing got worse again. (filled 10/19/2020)

10/15/2020
Visited primary doctor for lump on back lower left of head slightly above neck and ear soreness / problems hearing. Ear was not swollen and lump was not directly by the ear.
Got small dosage of Prednisone / Antibiotics. (Cleared up the lump and soreness)

10/19/2020
Prednisone for 1 week several pills per day (69 pills). This was not used until needed as prescribed by the ENT doctor previously for another sudden hearing loss episode.

10/26/2020 – ENT appointment
Hearing is significantly worse and tinnitus is worse with multiple louder frequencies. Low resonant hum that reverberates through the head making it difficult to focus and causing the head to hurt at times.
Prednisone for a 1-month prescription (6 per day, then taper off) (165 pills)
ENT doctor suggests getting an

12/08/2020 - MRI w/ contrast
Determined some fluid in right middle ear, left and right mastoids had minor fluid. ENT doctor was concerned about the middle ear fluid, but said the Mastoids showed no cause for concern.

1/4/2021 - ENT Appointment
Doctor could not unclog the right ear tube, so removed it. Left ear tube still clear and in place. Hearing has not improved, but less of the low resonating frequency now.
Doctor referred me to Rheumatologist to look into the possibility of an auto-immune type of issue and mentioned Meniere’s disease for the first time. Also, prescribed me Betahistine to start taking. Still waiting on the appointment with the Rheumatologist.

Vertigo Episodes:
8/21/2020 – 3PM – (8PM) – Vomited and took Dramamine

10/17/2020 Vertigo episode with vomiting (2PM-7:30PM), could not keep Meclizine down

12/4/2020 – Bad vertigo episode from 2PM until 10PM (sleep). Lots of vomiting and Meclizine did not help as could not keep it down. I even felt this coming on 30-45 minutes before full onset, took Meclizine at that point and could not keep it down.

Conclusion:
Doctor has been very slow to interpret my concerns and suggest new treatment options. Finally, the last visit, it was mentioned that I my have Meniere’s disease. Reading up on that seems plausible. I need to seek out hearing aids now and have started a course of Betahistine to see if it helps with vertigo and hearing issues. I have noticed an improvement in the tinnitus, but am only on week 2 of it and from what I read it can take 2 weeks to start working or such.

I do use iPhone for personal use and work and I have lots of work conference calls to run or attend. I have been scraping by with my Apple Air Pods Pro, but on my worst days, I had to cancel calls because I could not hear well enough to understand anyone. I have lots of trouble hearing in person and especially in a crowded place. My Air Pods Pro have transparent listening mode, but I can’t model the frequencies for complete control, so it helps some but not enough. What should I consider for hearing aids? Is the Costco KS9.0 a possibility? What type of HA? I was assuming . Any thoughts on the sudden loss of hearing and then it getting better and then worse and mostly staying worse? I forgot to mention that with every episode of vertigo, my hearing improved drastically right before, during or right after the episode started. Almost like a X (cross) pattern.

Questions:

  • Anybody else taking Betahistine?
    Where do you get it filled and does your insurance cover it?
    Note: I finally found an alternate Walgreens Pharmacy that does compounding orders but they do not take insurance on compounded medicine or at least that one.

  • Any insight, recommendations or thoughts on hearing aids?
    Can Costco handle my hearing loss?
    What works best with 2 iPhones (work/personal) and conference calls?
    Is the KS9.0 an option as trying to keep costs down as much as possible but do want to get something that will help my situation?

  • Any thoughts on Menier’s disease versus auto-immune versus any other ideas?
    I feel the movement on trying to help my hearing has been slow at best from my ENT until this last visit. Maybe they started understanding my frustration and how this time has been different than previous years.

I apologize for the fragmented post, but there is a lot of information that I am trying to put in here and I know have missed some still. Thanks for any suggestions, thoughts, and input.

Thanks!

Hearing Exam 2020-08-25
Hearing Exam 2020-10-26
Hearing Exam 2021-01-04

9 people in this conversation19 min readJump to latest
@cyberbeatless said:

Doctor referred me to Rheumatologist to look into the possibility of an auto-immune type of issue and mentioned Meniere’s disease for the first time.

We have a few members that have dealt with Ménière’s disease. Hopefully they will get in on your thread.
Really tuff situation for you.
Hang in there.

Regarding Costco and KS9. Maybe? You have a complicated loss. I don’t know if they’d be up for it, or even willing to try with your medical issues. It would be reasonable to ask.

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 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.

In reply to @MDB

@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.

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.

Edited

In reply to @kevels55

@kevels55 said:

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

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 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

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

In reply to @cyberbeatless

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.

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.

@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.

In reply to @HOHKate

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.

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.

In reply to @kevels55

@kevels55 said:

was Betahistine the one you put under your tongue, if I recall correctly?

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

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.

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