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Could this be early MD?

Discussion in 'Your Living Room' started by myke, Jan 6, 2021.

  1. myke

    myke New Member

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    Jan 6, 2021
    Hey everyone, I'm so sorry everyone is suffering with this and needs to completely re-adjust their lives!

    I haven't had a confirmed diagnosis, but a serious of unfortunate events seems to have led to what "seems" Meniere's like...and I was curious if anyone could ellaborate based on my experience if this is what you are having.
    I initially got tinnitus from a noise accident and then barotrauma, my Dr perscribed prednisone, twice.
    Each time in the morning or late evening I have come off of it the next day and so far everyday now with very little reduction I have had very "low" humming Tinnitus, so loud the room might as well be shaking.
    I remember vividly waking up in the morning each time, the first to a low pitched seashell sound in my right ear....
    The next time off of it (as I didn't make a connection) low-pitched "droning" wavering tone in my left, and the seashell sound has become louder and higher in pitch in my right. It is LOUD and intrusive as all hell.
    They are still here months later and are with me every time I wake up in the morning.
    As the day progresses they become quieter and I get "moving" so to speak.

    When I drink alcohol, the right ear goes bat crazy with the intrusive loud seashell sound, it becomes extremely loud.
    I didn't consider MD (at least early) until I woke up one night with vertigo. I've had vertigo before, BPPV where the room spins for no good reason.
    This time it was side-to-side, as if I were on a ship and seasick. It wasn't fun...but wasn't violent (I've had worse vertigo drinking alcohol). I've had moments of "unsteadiness" and random split second moments where my balance seems gone (like a rug is pulled out from under me, but it's very, very fast and it barely registers, like a tug forwards or backwards).
    Coffee seems fine, I can't tell if salt is or not yet to be honest, I've cut down but still the low drones are there in the morning (it's been at least a few days on the diet).

    Now. I do not seem to have much low frequency hearing loss....and even when I was drinking before I could still do a hearing test pretty well on my phone (was matching previous levels)...on top of that the fact it's low-droning in both ears so quickly and every time almost always when finished prednisone doesn't really point to MD....

    But...I was curious if anyone else had this kind of thing early on where they woke up to droning or in the night where there was side-to-side vertigo motion. It is not a lot of vertigo, nor hearing loss, and lasts a few minutes.
    I don't get the sudden tinnitus, then hearing going deaf, then vertigo.......yet.
    Any ideas are welcome!
     
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  2. Rubygirl

    Rubygirl Member

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    Oct 4, 2020
    Well first of all, there is Meniere's Disease and there is Meniere's Syndrome. My understanding is the "Disease" version stands on its own and there is no explanation. The "Syndrome" one is the similar symptoms but where they are attributable to some cause (such as barotrauma).

    The "vertigo" is mostly the spinning type but some people (like me) get the horrible seasickness motion you describe.

    My understanding is that Meniere's attacks typically go for hours not minutes though perhaps as this is early stage it would qualify.

    Most of us have constant tinnitus at some level but it usually jacks way up with an attack. The tinnitus may have preceeded the vertigo by months or years so often people don't put the two together (seems like there are many undiagnosed folks out there).

    Most people experience a sensation of "pressure" before/with the attacks in the affected ear(s). Do you get that?

    Hearing loss in the early stages can be not that noticeable actually. For me, it's like I had a cotton ball stuffed in my ear... like I'm trying to hear through something. So it's maybe muffled by say 20%. But then between attacks there is no noticeable loss. I am early stage and doing everything I can to preserve my hearing....

    So all this to say that the presentations of this condition are so variable... it certainly could be or it may not. It sounds to me you are sort of 50-50 so better to find a specialist and get some testing done!
     
    • Informative Informative x 1
  3. June-

    June- Well-Known Member

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    Yes i think it may be. But there are other possibilities too. It is i portant to see a specialist to rule out other possibilities like a brain tumor with mri and other tests before assuming it is menieres or cochlear hydrops ( hydrops can strike different parts of the tiny innner ear and cause different symptoms and it is givrn different names). It can also start out in one part and proceed to other parts. See a specialist and let them rule out the other possibilities. Then you can think about various menieres treatments.
     
  4. BT1

    BT1 New Member

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    Dec 17, 2020
    We do seem to have a couple similar symptoms but obviously for different reasons. Here's my story here...
    10+years of Tinnitus and Meniere's

    I should also mention that one of my WARNING signs of a FULL episode coming is when I feel the "random split second moments" you mentioned you've experienced. The feeling of almost dizzy, or that "tugging" feeling. Usually have a couple of those feelings and within a day or two a bad episode would happen.
     
  5. myke

    myke New Member

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    Jan 6, 2021
    Thanks everyone for your advice. I'll be pushing for a trial of a diuretic I guess and talking to my ENT about it.

    If it's in both ears did anyone here try steroids or antivirals? Did that help more than diuretics (for those with it in one ear)?

    I've had plenty of "tugging" moments, it's honestly more prominent when things are quieter and my tinnitus louder (only when it's quiet and I'm really listening for soft sounds).

    Is it "seashell" and wavering as the T sound for most of you? To me it sounds almost like a sink draining, it isn't one frequency but like an entire "patch" is having issues. I also have sound distortion too (so I'll hear the "wavering" in appliances for example).
    Hearing tests so far come back ok....and when compared to a test 3 years ago I have lost perhaps 5db in lower frequencies in both ears...as well as a much sharper drop @ 2k in my right ear. Those already existed 3 years ago they are just more prominent by about 5-10dB...which makes me think either this is normal Tinnitus or perhaps the issue has been going on for a long time and I never noticed since the tinnitus didn't manifest yet.
    When things get very quiet on a hearing test for 250-500Hz only....it becomes a mess (I can't hear it over the T / the tone bounces from ear to ear) as opposed to "I can barely hear it" which is prominent at higher frequencies (it eventually simply disappears as it gets quieter).
    Again. Absolutely no OMG Im spinning or can't walk moments as of yet whatsoever, just little "yanks" and a whow what was that feeling.
     
  6. June-

    June- Well-Known Member

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    Anti virals helped me tremendously especially in the realm of hearing distortion which was very sdvanced for me.. They also stopped the progression of the disease which does happen. I am bilateral but one ear was destroyed by surgery 10 years prior to hydrops so my experience is different than people who have two ‘live’ ears. My first ear w as lost to an acoustic neuroma, benign brain tumor. They arent that rare and they arent that ‘benign’ so get checked out by a specialist. You cannot just guess the difference. It takes an mri.
     
  7. myke

    myke New Member

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    Jan 6, 2021
    Can anyone describe the tinnitus they experience? Is it worse or better in the morning if it is constant? Does it sound lower pitched and wavering, bass like humming, like listening to a seashell? anything like that?
     
  8. June-

    June- Well-Known Member

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    Generally low pitched. Mine was a jet engine or a 50,000 watt industrial fan 24/7. In addition I had all kinds of clangs and bangs and far away explosion sounds when I was drifting off to sleep and the occasional horn blaring during the day. All gone now, thankfully.
     
  9. bizzie

    bizzie New Member

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    New to this but these are my thoughts as well. The closest relative in my family that has Meniere’s is my second cousin who is a year and a half older than me. I had some random episode in 2007 when I went to unlock a gate that suddenly started blurring and moving in circles. I clung to the gate thinking I was about to faint, like the feeling you get when things go dark because you stood up too fast. It only lasted about five minutes. There were a few times where I would turn over in bed onto my stomach and would feel like I was falling deep into the mattress with a tumbling in my head and a feeling like the world was a kaleidoscope for about five seconds and would then be fine. In 2018 I noticed my usual bilateral tinnitus was louder for 24 hours but only in my right ear. I always felt like I had wax in it and sometimes it hurt. That same year I noticed I would wake up suddenly nauseous, like I had just been riding some crazy amusement park ride, but would feel fine after a second or two.

    In Feb 2020 I rolled over onto my stomach and felt the tumbling again, only when I sat up my head still felt like it was swirling. The floor below me felt like a ship and the weight from one leg to the other seemed to shift. I felt like I had something in my ear. The feeling was and is 24/7. I feel constant motion on every surface my body is on and it almost feels like I have a gravity disorder because when I lie down and close my eyes, I feel like I could fall or flip upside down or spin very fast. I feel I do see things move ever so slightly if I overexert myself or get too hot—and sometimes there are the ‘whoa’ moments where the bed or floor shift suddenly or I am being pulled or pushed usually to the left/counterclockwise. One time I saw my surroundings wrap around me like a revolving clown show. Doctors diagnosed me with ETD and an MRI showed fluid in my right ear mastoid. Tinnitus started to ratchet up in both ears Mar 2020 to multiple tones—fax machine, TV sets, a mid-tone hum that sounds like the bell at a railroad crossing and a phone dialing one button, like someone’s finger is stuck there. I hear whooshing out my right ear like air is blowing into it or blowing out of it, sometimes with a mid-tone drone like being mid flight on a plane. I have been feeling pressure there and July 2021 it started to hurt a bit like someone was trying to wedge a funnel in my right ear. I’ve seen an ENT because the Flonase failed and my hearing is normal. The only triggers I’ve noticed is heat and butter, which makes me motion sick if I eat too much of it. Your symptoms do line up closely. I read people’s experience with this condition and I do wonder if symptoms build on each other one at a time. Hope you get some answers soon.
     

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