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Is Meniere's always progressive?

Discussion in 'Your Living Room' started by Leah B., Jul 29, 2021.

  1. Leah B.

    Leah B. New Member

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    Jul 29, 2021
    Hi all,
    I was recently diagnosed with both celiac disease (10 mos ago) and Meniere's disease (yesterday). It seems both of them may have an autoimmune component. Interesting, but not surprising.

    My journey with everything started in April 2019. At that time I contracted some sort of cold or flu. While I got over the initial symptoms pretty quickly, for at least a year afterward I just didn't feel better. I developed GERD, brain fog, extreme fatigue, dizziness, memory problems, nausea, lingering cough (like death rattle coughing -- people would walk around me in the store if they heard me coughing), aches and pains in my bones. I just did not know what was wrong. I saw many doctors, but none could figure it out until eventually I talked with a neurologist who ran a bunch of tests. All came out normal except the inflammatory marker and the marker for celiac. I went to a GI doctor who confirmed celiac through endoscopy. I have always had asthma and allergies, so this diagnosis wasn't surprising. MOST of the symptoms got better or went away completely when I went GF. I was left with dizziness, balance problems, and tinnitus, which led me to the ENT in April of this year.

    She ran a bunch more tests, including MRI, VNG, ECOG and other audiologist tests. After then tests, when I talked with my doctor, she literally spent 5 minutes telling me everything that it wasn't and then just a minute telling me what it WAS.

    She made it sound like it was not a big deal--that thankfully it wasn't a brain tumor or MS, and it was "just Meniere's disease." It's something that can't be cured, but can be easily managed.

    She advised me to decrease my sodium intake and see her in 6-8 weeks. I came home happy and started looking at what Meniere's disease was .... and now I'm kind of devastated. It is not "just Meniere's disease." Is it always progressive? No way to at least stop it where it is now? In my 20s I was also diagnosed with idiopathic intracranial hypertension. It seems to be in remission, but do you think periodic bouts of that could have caused the Meniere's?

    Right now I have about 20% hearing loss in my left ear and minimal loss in the right, though I experience constant tinnitus in both. I am lucky in that I don't get the extreme vertigo; rather, I feel like I'm on a boat rocking side to side. I also have the horizontal nystagmus, but it is gaze-dependent, not random...if that makes sense.

    I can live with what I have now, but I am pretty bummed at the prospect of eventually losing all my hearing. I'm thankful that the prognosis isn't worse, but having just gotten the hang of the celiac thing, now this.... I'm pretty sad right now. Thanks for listening. Any helpful advice or information is welcome.
     
  2. Leah B.

    Leah B. New Member

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    Jul 29, 2021
  3. June-

    June- Well-Known Member

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    Mine was until I took antivirals. They caused it to recede, heal and stopped the progression. Mine followed in time a very severe cmv mono. I don’t know if that was the cause but the solution was antivirals (generic forms of acyclovir, famvir) and also allergy treatment. The antivirals seemed to cure the very strange and awful hearing distortions, tinnitus and creeping balance problems. Good luck.
     
  4. meemil

    meemil New Member

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    Oct 27, 2019
    Hey,
    Little bit suspicious about that flu you had in the spring. The fact that you started getting bunch of unrelated symptoms afterwards (like bone pains, memory problems etc.) sound quite a bit like Lyme Disease or its co-infections. Could there be any possibility for a tick bite?

    Also, as there's some autoimmunity going on, LDN could help!
     
  5. Bulldogs

    Bulldogs Well-Known Member

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    There is a doctor at Duke University who treats MM and has had great success doing so. She seems to think it is a lumbar or spinal fluid problem. Too little or too much.
    Not sure of her name but she is at Duke University and I went to see her and she is very nice and returns emails. I ultimately decided on the laby and am glad to finally slay the beast Iver 10 years ago.

    she puts your lumbar/spinal fluid back in balance.

    God Bless
     
  6. Brother_of_Nool

    Brother_of_Nool Member

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    Did you get antibiotics when you had the flu? They cause all sorts of imbalances in your digestive tract - killing all sorts of good bacteria. The instructions even say that you have to eat things like yogurt to help rebuild the good bacteria afterwards.
     

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