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My meniere story

Discussion in 'Your Living Room' started by Punture, Sep 4, 2021.

  1. Blakeh

    Blakeh Active Member

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    Hi, sorry I just saw this. Yes I had brain fog and imbalance.

    Post surgery I have none! It feels great.

    Blake
     
  2. Punture

    Punture Member

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    Just wanted to provide an update and hopefully get people’s opinion.

    Recap:
    I am 31 and had probable Meniere’s disease since 7 years ago. I was mostly symptom free with two major relapses but was in remission for 6 years… until August of this year. I say probable Meniere’s because my hearing loss is high frequency.

    This relapse, I started on valacyclovir, JoH and betahistine. Received 5 steroid injections. I was hopeful that I would be in remission again by this time. Howecer, my symptoms are persisting. Aural fullness, fluctuating hearing loss, vertigo attacks and daily imbalance even when I am not having attacks. My hearing loss and imbalance got slightly better since August but still affects me. Vertigo attacks are maybe 1 in 2-3 weeks but lately became a bit more frequent.

    Compared to last two relapses, there are a few things that are different this time. My vertigo attacks are not as spinny as before. More often it is more severe dizziness but very little rotation. Also, I feel I am severely affected by the barometric pressure this time. In addition, it keeps bothering me that I went to an amusement park a week before the onset where I could have gotten barotrauma. I had ear pain for a week after the amusement park before all the symptoms of Meniere came back. Could it be perilymphatic fistula?

    I am currently lost in terms of what I need to do further. I can’t keep my job if my symptoms dont get better. My neurotologist says I can get more steroid shots but is not offering anything more. He says it is too early for gentamicin or surgery.

    My dose of valacylovir is currently 1000mg a day. I was on 3000 mg for 3 weeks then 2000 mg for 3 weeks. I was thinking if I should’ve been on 3000 mg this whole time.

    Aside from barometric pressure and stress, I don’t have other definite triggers….

    Any help or suggestions would be greatly appreciated.
     
  3. Donamo

    Donamo Active Member

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    May 12, 2014
    Hey Puncture :)

    RubyGirl suggested earlier on this thread about diet, no nuts, some grains etc. Do you follow this? It is important for me to do that.

    And yes, I would have stayed on the 3000 mg.
     
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  4. Nathan

    Nathan Well-Known Member

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    What amusement park occurrence, activity, or accident (head trauma), prompts your consideration of possible perilymphatic fistula, &/or barotraumatic perilymph fistula?

    What of your lungs & gastrointestinal tract?
     
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  5. Punture

    Punture Member

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    Sep 4, 2021
    Thanks for the reply. Yeah I barely eat any nuts although I don’t actively keep track of which food are high in arginine. I will try to do so now.

    It is difficult to ask to go back to 3000mg as the doctor prescribed valacyclovir based on Dr. Gracek’s paper…. Maybe I will ask though.

    Well I rode the usual roller coasters, fast drops and flume rides. There was no specific accident or injury that happened, but I started developing ear pain the day after going to the amusement park followed by Meniere’s symptoms a week after.

    I do have GI issues as well, mainly IBS with diarrhea. I have been living with it for the most of my life.

    No lung issues though.
     
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  6. Nathan

    Nathan Well-Known Member

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    The forces placed onto your body may have dislodged otoconia, causing benign paroxysmal positional vertigo, too.

    Barotraumatic perilymph fistula is possible, though in my estimation of much lower probability considering the type of forces amusement park rides place upon the human body.

    If I remember correctly, & if performed within a given period of time, a creatine kinase test wields the ability to determine barotrauma-induced middle or inner ear tissue damage.
     

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