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Doctor suspecting meniere's... what do you all think

Discussion in 'Your Living Room' started by Victor Bernhardt, Jan 13, 2020.

  1. Victor Bernhardt

    Victor Bernhardt New Member

    Jan 13, 2020
    I reside in the great white north of Canada, and we have an obscenely slow healthcare system.

    Back in 2017, I developed really bad tinnitus in my right ear, and generalized ringing in both ears, like competing tones. Anxiety took over and I was never the same. Hearing tests showed good hearing, no dips, but only tested at the usual speech range. I'd have these bouts of elevated tinnitus where my ear and/or ears would go completely deaf but would come back slowly after a minute or two, fleeting tinnitus I suppose.

    Also have crunchy, crackling noise when I flex my... inner ear I think?

    1st ENT told me "fluid behind eardrum" and heavy wax. Left it at that.

    The next year (2018), I was hit with completely random, out of nowhere vertigo. The sensation was similar to walking on a rocking boat, or feeling constantly drunk all the time. This was the absolute worst and I hit rock bottom in depression.

    Afterwards, I'd get these other, random crazy vertigo episodes while this was happening, feeling like my entire physical being was spun quickly up side down and back; these would last a second or two. Imagine laying down on your back, and rolling to your stomach and back- that's what the sensation was like,. No rhyme or reason to it, f'ing scary.

    MRI/CT scans all clear, no tumors or anything. Blood tests only showed Vitamin D deficiency so I supplement (was only tested for B12 in the B vitamin family). Wax was far from excessive, no infection.

    Of course, four months later, this vertigo sensation randomly goes away (tinnitus remained). I was otherwise fine mentally and life wen't on.

    Cut to January 2019. That rocking boat vertigo hit again, completely out of nowhere. Felt so dizzy while randomly walking in a mall. It just literally happened. My head felt full of pressure, so heavy, and of course, would get the other split second spinning body vertigo feeling I mentioned, usually while I was trying to sleep in bed (yay). This all lasted another SIX months before it subsided.

    Got another couple of MRI/CAT scans; totally, all clear. Bloods fine. Yay?

    So tinnitus is slowly worsening, more bouts of minor vertigo feeling which lasts a few seconds, but enough to freak me out. Sometimes feels like my hearing is cutting out but then immediately comes back, like a flicker.

    Saw yet another ENT, who told me he's leaning towards Meniere's diagnosis, but nothing confirmed because it's such a final, serious diagnosis.

    Follow-up appointment a really long time from now.

    EDIT: I wanted to mention. For the rocking boat vertigo, I have attended three doctors who'd initially say BPPV. They'd do that head tilt crystal trick (epley maneuver). Didn't work at, and then they'd say, no idea *shrug*.

    Thank you for reading. Peace.
  2. Gardengal

    Gardengal Member

    May 12, 2015
    Sounds like maybe MAV? Research it. Migraine associated vertigo. I think menieres has to have hearing loss and vertigo (violent) lasting over 20 mins.

    This, of course, is just my opinion! There are lots of good MAV threads here, on the database. Maybe read some and see what you think.
  3. Gregswim

    Gregswim New Member

    Jan 13, 2020
    Short answer. Sounds like Meniere's. It's not the end of the world. In most cases it can be managed. Here are some things that have worked for many people:
    1. Look at John of Ohio's plan for dealing with Meniere's (google)
    2. Take SERC (betahistine) 16mg 3 times a day.
    3. Start taking Lysine - maybe 500 mg 3 times a day on an empty stomach - keep taking Lysine for life. After a while reduce to 500mg a day on an empty stomach.
    4. Take a treatment of Acyclovir tablets 400mg 5 times a day for about 3 to 4 weeks.

    The above is a quick and dirty rough outline. Many researchers now are considering Meniere's possibly caused by a herpes virus that is usually latent -- but pops up from time to time. Lysine suppresses it -- and Acyclovir can suppress it to. No side effects with Lysine. But with Acyclovir -- you won't have to take a full dose all year -- just a 3 to 4 weeks, in my non-professional opinion -- about once a year -- or cut down to 400mg daily all year. You will get more details and better info on this site. Good luck. Hang tough.
  4. Onedayatatime

    Onedayatatime Active Member

    Nov 22, 2016
    Welcome to the forum VB. From your description alone, this is a place you can learn a few things. Maybe even help you solve or deal with your problem. You have certainly come to the right ballpark.

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