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New here. Is what I’m experiencing Minieres?

Discussion in 'Your Living Room' started by Sophia in Toronto, May 9, 2021.

  1. Sophia in Toronto

    Sophia in Toronto New Member

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    May 9, 2021
    Hi all - first time poster, but I’ve been around the site for a couple years.

    My story. I’m 31, and when I was 28 I suffered a small brain hemorrhage in my midbrain. No reason to assume this would happen to me given I was a healthy young adult, but there you go. I was fortunate to recover very well but two weeks after my hemorrhage, I noticed certain high pitched sounds in my right ear sounded off. This passed after a day or so, and then the ringing began. And never left. Today I have 5 or so different tones I can hear in both my left and right ear, not all symmetrical, and it’s difficult on the best of days.

    When this all happened I did notice fullness in my ears, which eventually disappeared but would come and go, on and off, in the last 2.5 years. However since February both of my ears, especially the right, have been full at various points throughout the day and nothing I do seems to get rid of it.

    Adding to that, I’ve woken up now on a few occasions where I felt disoriented, dizzy and/or like I’m floating. It’s never progressed to full spin vertigo and I have always been able to get up and walk, even stand on one leg if I needed to. Haven’t experienced nystagmus either when this happens, as far as I know, and my hearing remains the same.

    when all this fullness and ringing started nearly three years ago I went to two different otologists, one in 2018 and in 2019, to check and make sure this wasn’t inner ear. Both felt it wasn’t, given my hearing was normal (still is I think, although haven’t done a professional test in a year). But I wasn’t having these strange dizzy experiences then, and things can certainly change. I take comfort knowing my hearing is consistent in both ears when I check using hearing test apps, but the ringing has gotten worse, this ear pressure in both ears is maddening and this dizziness is definitely enough to scare me into thinking Menieres is the culprit.

    The waitlist for an otologist in Ontario, Canada is mind blowing, but fingers crossed I’ll be seeing someone in 2021.

    Any advice from this great forum is welcome and appreciated. It’s been a tough few years between my stroke and now fears of a menieres diagnosis, so hoping to have some clarity soon. Thank you!
     
  2. Rubygirl

    Rubygirl Member

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    Hi Sophia!

    I'm from Toronto too (now living in Ajax). Welcome, though sorry to hear of your struggles. While you are waiting to see the specialist, have you started trying anything that people have been suggesting in these forums? You mentioned you've been around the site. What are you watching/avoiding/changing/adding in your diet? Are you taking any supplements? It might be worth assuming you have Meniere's in the meantime and making changes to see if there is some improvement...
     
  3. Sophia in Toronto

    Sophia in Toronto New Member

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    May 9, 2021
    Nice to meet a fellow Ontarian! I was just in Oshawa this weekend visiting family.

    Yes, I’m working with a nucca chiropractor at the moment to see if there’s any benefit. I’ve read up on JOH and CATS. I’ve had cold sores all my life so JOH may be an ideal avenue to explore, but my brain tells me this all started because of my hemorrhage.

    The real stress comes from not knowing what is happening, and I’d really like to see a specialist to get some definitive answers. Anything that can help relieve the pressure and yes, remove the random dizziness. I’ve tried loads of things to reduce the ringing in my ears, only these last few months are these other symptoms appearing.

    The worst is driving. My ears just hate it, the pressure gets way worse for both of them! Not sure if that’s normal or not but drives me crazy.
     
  4. Onedayatatime

    Onedayatatime Active Member

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    Don't rule out or ignore the possibility of vestibular migraine, also called MAV on this forum. Search old posts for it and read the discussion below started by TexOkie. BOL to you!
     
  5. Rubygirl

    Rubygirl Member

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    Absolutely everything you are experiencing is the direct result of the brain injury you suffered. Though maybe it is the indirect cause. I guess my approach is to say, well.... it's not going to hurt me to try some of these suggestions like JOH or others (except for the money I would pay for the supplements) and in fact many of the things recommended are actually beneficial to overall health and even more specifically brain & neurological health. So you really don't have much to lose.

    Then as you would know from your reading on MD, you have to lower your salt intake. But all the health experts out there say that everyone should be getting no more than 2300mg sodium per day and most people get several times that. So just for better health, watch the salt.

    I would also recommend you check out the protocols offered by Life Extension Foundation for neurlogical issues. They specifically have one for Tinnitus and another one for Vertigo and Dizziness. Very scientific, well researched and many of the supplements they mention are also in JOH for example. But things like Taurine, N-Acetyl Cysteine, Lipoic Acid, Glutathione.... these are powerhouse supplements for health in general. Anyway, here's the link: Scientific Studies on Cancer & Other Diseases - Life Extension

    Hope this helps!
     
  6. Sophia in Toronto

    Sophia in Toronto New Member

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    May 9, 2021
    Thanks everyone. @Rubygirl lots
    Of good information, thank you. I am waiting for an assessment before I jump to any further conclusions (this is very me), but I am glad to know there are many options out there to try if this is a Menieres diagnosis. It seems very likely to me that this all stems back to my stroke, and perhaps these are delayed symptoms. Either way, I look forward to some answers. Nice to have a place like this forum to share and connect with others. Invisible disabilities in particular can be so distressing, and it helps to know there are communities we can lean on for support who understand the challenges we face.
     
  7. bizzie

    bizzie New Member

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    Apr 20, 2020
    I have all of these exact symptoms. All the time.
     

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