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Random thoughts from an experienced Menarian

Discussion in 'Your Living Room' started by Mike B, Mar 3, 2019.

  1. Mike B

    Mike B New Member

    May 26, 2017
    I was formally diagnosed with Meniere's in my right ear in August, 2005, and after looking back at life, I believe I have been actually dealing with the disease/symptoms since I was a teenager.

    Had a Laby on my right ear Jan. of '09, the diagnosed Bi-lateral around 2012.

    That said, I thought I might share a few things I've learned while dealing with this nightmare of a disease. Hopefully, this might help new people who are most concerned with each new or re-occurring symptom.

    I'll start off with the issue of Meniere's being episodic, meaning it comes in and fouls up your life for a time, then seems to almost (but not quite) fade away. Sometimes when vertigo attacks hit, it seems completely random, and at other times, such as when the barometric pressure drops, issues are almost predictable.

    Between attacks, Ol' Man Meniere's is going to drop you little reminders that he's still in charge of your ears. Some days the tinnitus will drive you bonkers, and at other times it will drop back to very tolerable. There will be days you'll have those "bottom drops out" feelings that last only seconds; just enough to scare the crap out of you and trigger through-the-roof anxiety. Then, of course, there's those days when your brain feels more like a loaf of bread, and you can't put a coherent thought together. At the end of the day, you're honestly proud of the fact you were able to dress yourself and hold a lucid conversation with your cat despite the lack of function between your ears.

    People new to the disease tend to over-analyze every odd sensation or feeling, and this only adds to the stress. Doing research and learning about the disease is fine, but understand that your ears/brain are going to pull all kinds of shenanigans on you, so don't freak out every time the pitch of your tinnitus changes or you're dizzy for a few minutes. It's all part of the same package.

    The basic approach for new Menarian's is your ENT will put you on a diuretic and tell you to reduce your salt intake. The intent of this is to reduce the amount of fluid available for the inner ears. It's a good strategy, but doesn't always work. For some folks, salt is an issue, and for others they can salt the hell out of their McDonalds french fries and they notice no difference.

    There are a couple things I removed from my diet when I found out they were "triggers", and were causing me all manner of misery. First, I had to drop caffeine, and learn to drink decaf. Next was giving up alcohol, which was not a big deal, however I did enjoy my Yukon Jack. Not a drop in over 10 years. Thankfully, nicotine is not a problem for me, but I understand it does cause issues for some.

    Sometimes, even when you're doing everything right, you'll get slammed with an attack. Why? Who the hell knows...if Meniere's was a human even the most saintly of ladies wouldn't hesitate to call him an asshole.

    So yeah...Meniere's will have an impact on your life..BUT, it won't kill you. Find a good Neurotologist that's not afraid to try different treatments, hoping to find that one thing, or combination of things that will reduce the disease's impact on daily life.

    Live life to the fullest, and on the days you can't, spend your time thinking of how to best enjoy your next good day. The Meniere's isn't going away, and even though today might suck, tomorrow might be the first day of year long remission.
    • Fistbump/thanks Fistbump/thanks x 3
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  2. InfoQuest

    InfoQuest New Member

    May 12, 2014
    Thank you Mike. I could not have said it better!
  3. EmilyP

    EmilyP New Member

    Jan 6, 2019
    thank you!!!
  4. Mike B

    Mike B New Member

    May 26, 2017
    I see so many new people come to the forum with questions and
    a boatload load of anxiety. I remember back when I was first
    diagnosed, and I was not at all prepared for the impact of the
    smorgasbord of associated issues that came with the disease.

    Another vertigo attack is something we all have stress over;
    nobody wants to go through that again. Add to that the anxiety
    of tinnitus, fullness, fuzz-brain and bouncing off the hallway walls
    and it doesn't take long before you're a wreck.

    Guess what I'm trying to say is: We'll never give up the fight, but
    we've also got to learn how to roll with the tides.
    • Agree Agree x 1
  5. Pupper

    Pupper Active Member

    Oct 15, 2016
    Good post Mike B. True about coming to terms with it. My dad is more upset than I am about it. He's always emailing me like, "you've had 3 surgeries why can't they fix it?! I want to talk to the doctor. Make sure you include me. You can't live like this!" He seems to think it's a knee problem. You get an MRI and the doctors go in and attach a screw here, and a pin there, and you're all set. I tell him Meniere's is ,in part, still a mystery to the medical community.

    As long as I don't get the spinning attacks, I can deal with the constant light-headedness. Not happily. But perhaps peacefully.
  6. Mac

    Mac Member

    Oct 23, 2017
    Lots of grizzled MM veterans on this post. I recommend all the rookies read it closely and take it to heart. I am 11 years in to this. Mike is spot on.

    Well said Pupper about the family. They are so baffled as to why I am not back to "normal" after the surgeries. I know they mean well but it does get frustrating because you start to look like a wimp in their eyes. If they only knew.
    • Agree Agree x 1
  7. imasteeler

    imasteeler Member

    May 12, 2014
    All good points - thanks!
  8. Mike B

    Mike B New Member

    May 26, 2017
    I believe that in this modern age with all it's new medicines and technologies,
    the majority of humanity think of a sickness as a short term thing...you
    get the flu or a cold, and within a couple weeks you're back to your old self.

    Meniere's is an entirely different creature..it moves in and stays. At first, many
    people wonder about the odd balance sensations they'll get from time to time;
    things just seem to be out-of-whack.

    Meniere's is progressive, and as time passes and it's settled into it's new
    home, it begins to express some of it's more heinous traits...tinnitus, vertigo,
    mini-spins, etc. That's when people go to the Dr. to find out what the hell
    is going on in their skull. You get a diagnosis of Meniere's Disease.

    Reality begins to set-in when we come to understand that this illness is
    different...it's not going to go completely away. Ever.

    Yes, your life will change as you begin to adapt to the irregularities of
    Meniere's, and you find you may not be able to do all the things you want
    to on a given day. Be patient...a good day will come along and you can then
    proceed to enjoy yourself like any non-Menarian.

    Glad this helped a few folks, and I hope over time new Menarian's will read
    it and find some comfort. Meniere's is a marathon, not a foot race, so find
    a pace you can maintain and hang in there. :)

    STEVEV New Member

    Mar 15, 2019
    I haven't been diagnosed with MD at this stage, but I won't find out for a few weeks or months before I know.
    Appointments with ENT and Neurologist at set.
    Wish me luck as I start this journey and I'll keep you posted on the outcomes in the coming weeks.
    Thank you for sharing your experience especially not stressing out.

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