Further loss within months…..looking like Menieres Disease

Hearing Loss
#1

Hi all,

After another (almost a week long!) of fullness, dizzy, hearing loss, muffled sound and headaches I went back to Ent twice this past month……this is my 4th “episode” since December and each time I regain the sudden loss but my hearing is falling when it levels out.

My recent test last week has
Me getting down to 75/80 decibel
Loss in the highs right ear and 70/75 in the left ear. The ENT has asked to do more tests in 4 weeks but said she is leaning towards a Menieres Disease diagnosis.

I’m really thinking it’s only a matter of time before my hearing gets severe/profound and they can’t seem to give me answers.

Has anyone else had something similar?
The said my word recognition is still good in quiet and until it gets worse hearing aids should be fine.

My problem is trying to hear in busy I situation !!! That and the fluctuating loss

Has things a touch loud some days and others too low/ quiet!!!

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#2

I don’t want to alarm you, but Meniers Disease can be very debilitating…. I would read up as much as possible to forewarn yourself to some possible outcomes, it basically destroys your vestibular(Balance) and over many years, it takes most of your residual hearing with it, if you can hack the medication, that will help greatly…. I couldn’t because of side effects…. I got cluster MD vertigo attacks, I was sometimes in bed for days, occasionally longer, work was impossible for approximately 8 years, the vertigo subsided after that, but those 8 years were traumatic, vertigo, visual distortion, hearing distortion, I was never actually physically sick, but I had the nausea during MD attacks, wild variations on hearing loss were the norm, Tinnitus would be off the scale, eventually the Tinnitus became my early warning system, as it grew in intensity, I was acutely aware that a MD attack was very imminent, it was time to lay down….the walls moved, the ceiling moved, everyone’s voice was distorted, it could last a 20 minutes, a couple of hours, or many hours, there was no rhyme or reason, chronic fatigue/extreme tiredness usually followed…. Try to avoid any stimulants, Tea, Coffee, Alcohol, and watch your salt intake…… There are also visual triggers, like shopping malls repetitive flooring, you may want to try to avoid these places? You have my empathy, and I apologise for being somewhat blunt, hopefully you do not have MD, and if you do, I hope the medication works well for you! You may not be as bad as I was, MD effects some folks differently, perhaps mine was more severe because I took nothing to help elevate the symptoms, but I survived…… Good Luck, and best wishes, Kev.

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#3

Unfortunately there is no cure for MD either. Luckily after maybe two years of hell my episodes basically disappeared after starting a daily ritual of Meclizine. My hearing has not declined any further so I’m happy status quo. Hopefully yours plateaus soon.

#4

Yeah @lgbuck62, you are correct, mines (the vertigo side) petered out, that was approximately 18 years ago, the only real legacy apart from the continuing hearing loss, and severe Tinnitus, was a dodgy balance, especially in the dark, I have had a few bad falls, but thankfully not many, and no lasting damage, just bruising…. Also in the dark, I have a peculiar recurring habit of walking into walls, nowadays it only happens occasionally though…. Meniers Disease is extremely rare, I believe it isn’t genetic, so when my 63yo brother was diagnosed last year with MD, it took a while for that information to process, the odds of 2 close family members having MD, must be astronomical? I am glad your medication worked effectively for you, I couldn’t take the medication, it made me feel permanently ill… Cheers Kev

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#5

Just to clarify–after every vertiginous episode, your hearing returns but is still worse than it was prior to the episode? That does sound like pretty classic Meniere’s. The most common other option would be auditory/vestibular migraine, but in that case hearing typically returns to normal between attacks.

Meniere’s vertigo comes and goes but then stops eventually. It’s worth looking into vestibular rehabilitiation and balance support now even if your balance is still good so that you can work on a strong foundation for the future.

People with hearing loss from meniere’s tend to have a harder time in noise than people with a similar loss that is NOT caused by meniere’s. Look into your options for FM systems. If your hearing does decline in the long run, you may be looking at a cochlear implant, but you just have to manage things as they come. Modern outcomes for cochlear implants are quite good. That’s basically just to say: Even if your hearing DOES drop way down, which it may not, there will be options.

Sorry you’re going through this. Meniere’s can be rough.

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#6

Yes. My loss drops dramatically during an “episode” then goes back close to where it was. However, seems to be at least a 5 decibel loss each time in the highs more then the lows that stays permanent.

Not sure what you mean about the balance help. I am not getting the vertigo part at all. Just dizzy and migraines.

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#7

I was diagnosed with MD a long time ago. I have Antivert which I take when I have an episode. It’s gotten much much better over the years. I have found, and I am not a doctor but was told this by a doctor as only a tip to try, that, if I begin to experience the dizziness, I find a small object in the room (ie a doorknob) and just stare at it but most importantly stare at it without any blink at all for at least 30 seconds. If you have to blink, then start all over with the 30 seconds. It’s hard to do, but it has worked for me over and over.

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