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Help from you to understand "my condition"

Discussion in 'Your Living Room' started by mariofrommty, Dec 8, 2018.

  1. mariofrommty

    mariofrommty Member

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    Oct 7, 2016
    Hey guys,
    ive been living with this condition for almost 3 years.
    it started out of the blue, when i woked up one day..
    my left ear felt blocked, and it was ringing and it never went away.

    at first i didnt know what it was, i thought it was because of my passion for music.
    but in mid 2016 i went to consult an ear specialist and he told me that my problem was likely to be "an endolymphatic condition". because i had a minimal loss in the lower frequencies.


    by the end of 2016, my tinnitus went bilateral.
    Another symptoms or conditions started to appear, during this year and 2017.

    During this time i was diagnosed with Sleep Apnea.
    and Also.. since the tinnitus started, i was starting to experience other symptoms... like
    Visual Snow, Severe Brain Fog, Random Joint Pain, Awful sensations, etc... got tested for many things, at the end i was diagnosed with Fibromialgya.

    To be honest i been doing good.
    Got used to the pain, visual stuff and ears ringing.. and
    got a new job, been traveling the world.
    Going to concerts, working on my music, i started to loss the fear, been having a night of alcohol... once in a while, eating whatever i want, and not proctecting my hearing.

    But...

    During the mid of this year.
    I started to noticed that my hearing has been changing.
    some of my songs doesnt sound the same, it feels like ive been losing a little bit more faster those "Low frequencies" and also i had a few episodes of dizziness.. during the month of july, i went to the dr and prescribed SERC which didnt work at all haha.
    But i started to take Pycnogenol and Lysine and the dizziness went away and since then i been doing fine, i stopped taking pycnogenol and lysine a few months ago.
    I also started a keto diet to get rid of my candida infection (that i have had for 9 years)
    and im not sure if that made worse my EH symptoms, also i started using the CPAP machine for my sleep apnea, who might be helping my symptoms.. or making it worse, who knows?

    Not sure if they really helped me, or the dizziness went away just because
    thank god i have never experience a full blown vertigo.
    and i wish i never get to experience that...

    So right now im more concerced about my hearing
    and also because its bilateral!!!
    i guess i have an atypical case of Endolymphatic hydrops.

    i wanna be a success story.

    i think i need to trace whats the cause of this.

    Could it be the sleep apnea who caused the EH and Fibro?
    Could it be the candida ive been living with for 9 years?
    How normal is to go bilateral in less than a year?

    Also worth to mention, i was 28 years old when this started
    and i was always super healthy (well i only had the candida)
    but everything started to change when i started to gain weight (because of the candida) and it caused my sleep apnea... and here we are now.

    all comments and thoughts are welcome.

    thank you guys
     
  2. Clare

    Clare Active Member

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    Mar 31, 2018
    You've got a lot going on there, and it's not a classic meniere's pattern. Stick with the CPAP for sure, because inadequate sleep messes with everything. Sounds like time for additional medical opinions -- keep trying until you get answers that make sense to you. I hope you have a good primary care doc who will help you navigate. Good luck.
     
  3. AnneT

    AnneT Well-Known Member

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    May 14, 2014
    Alberta
    We are so complex. Advocate for yourself, research and follow your intuition. Do you have an audiologist? Have you seen an ENT or otoneurologist? Had an MRI to rule out acoustic neuroma or MS? That’s all how my journey began. Keep us posted!
     

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