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Fluctuations :(

Discussion in 'Your Living Room' started by SkateThreeOfFour, May 16, 2020.

  1. SkateThreeOfFour

    SkateThreeOfFour New Member

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    May 16, 2020
    Hi, new to Menieres/Cochlear Hydrops.

    Discovered sudden low frequency hearing loss about a month ago, got to an ENT and got a steroid shot within a week. No improvement in the days after the shot. The next week tried prednisone for 10 days, again didn’t seem to do much. Had another steroid shot and 3 days later randomly had a dizzy spell my ear and hearing went back to normal (it was amazing!) for a day and a half, but then sadly returned to terrible tinnitus and low frequency loss. ECoG and ABR tests indicated Menieres. Next ENT appt the following week had a steroid shot and same day hearing recovered and since then it’s been fluctuating one good day (not perfect), followed by a day or so of terrible hearing.

    Anyone have similar fluctuations or experiences like this? I’m tracking all mu sodium, just started Dyazide. What else should/could I do?

    Any hope?
     
  2. Brother_of_Nool

    Brother_of_Nool Member

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    May 24, 2019
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    I think that fluctuations in the beginning are common. For the first couple of months I had bad weeks interspersed with a good day here and there. Within six months, my low end hearing was gone. I keep hoping that I'll stumble over something that will bring it back, but it's been two years now.
     
  3. June-

    June- Well-Known Member

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    Yes, it is a defining characteristic of cochlear hydrops. Antivirals and allergy shots stopped the progression of the disease for me, reversed the distortion, restored low frequency hearing loss. I have maintained normal range hearing now for about ten years. Dr Derebery at House Ear Clinic in LA oversaw my treatment.
     
  4. IvanA

    IvanA Member

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    Apr 30, 2020
    Can you explain more about the allergy shots? I read here about the antivirals and I started the JOH regimen+monolaurin but I didnt know about the allergies.
     
  5. SkateThreeOfFour

    SkateThreeOfFour New Member

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    May 16, 2020
    Even since I posted this, i’ve gone from 60-70 db to almost perfect and back in a space of 48 hrs. It’s almost like my ear is in a constant two day cycle.
     
  6. twodogs

    twodogs New Member

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    The fluctuation can make a person feel crazy.
     
  7. Brother_of_Nool

    Brother_of_Nool Member

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    Whenever I would reach the "good" part of the cycle, I would think "Maybe it's over. Maybe something I'm doing is working". But it always came back. The good days became less frequent - until they were gone. But that's the literal breakdown of Ménière's. If you look at medical site (or Wikipedia) they flat out say that the symptoms last for a number of years, then they go away but you're left with ringing and some hearing loss. I would assume that some people luck out and recover completely.

    It's worth giving some of the suggestions on the site a try (JOH, antivirals, B vitamins, diet tips etc.) but it's tough to see if anything is working when you have good and bad days - how can you tell if something is working when it might just be a lull in the illness?

    Personally, I'm better off by watching my diet. The pressure in my ear was off-the-charts, but I dropped the supplements and the pressure went down considerably.
     
  8. SkateThreeOfFour

    SkateThreeOfFour New Member

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    May 16, 2020
    Following up.

    After 2.5 months of approximately daily swings between normal hearing and 50-70 db (depended on how bad) I believe I’ve broken my cycle. Sharing this in case it helps anyone else.

    My hearing health has dramatically improved after cutting back on sugar, specifically added sugars. It’s almost been a week now of regaining my hearing and breaking this fluctuating cycle.

    Curious if anyone else has tried this and if it helps others.
     
  9. SkateThreeOfFour

    SkateThreeOfFour New Member

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    May 16, 2020
    Unfortunately my temporary great hearing has tricked me yet again.

    Hearing loss back again as I’ve been suffering for the past week. On to the next potential dietary trigger...
     

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