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Waltzing walls

Discussion in 'Your Living Room' started by bizzie, Sep 18, 2021.

  1. bizzie

    bizzie New Member

    Apr 20, 2020
    I am back again, still undiagnosed with 24/7 dizziness, tinnitus and ear feeling full with some pain after a year and a half. I have seen my ENT, doctor, neurologist, Urgent Care. So far, the diagnosis is Eustachian tube disorder though none of the treatments prescribed have helped. What brings me here—my second cousin has Meniere’s and we had a phone conversation this summer where I told her how I was feeling and she could relate a bit. Basically, I am dizzy. Feels like the floor is always moving, rocking, twisting in a circle, tilting. If I look at something it seems like a wall is quickly swimming and today while sitting in the break room I felt I was going to fall backwards in my chair and the walls were “waltzing” not spinning around me, like a teacup ride starting up or a lazy Susan.

    I have been referred to do vestibular therapy, but I feel like things have to get worse before they get better, because the movement is getting more intense days after the session. If I go to sleep I feel like I am falling down a spinning or spiraling well. My tests are normal, but my tinnitus still sounds like a continuous railroad crossing bell or hum. I had one morning where I suddenly felt pinned to a desk while the wall slid back and forth and I saw the floor rocking and the floor twisted so bad I almost fell. I’ve only heard of vertigo as quick spinning, but could it also feel like the room is dancing? Thanks for reading this.
  2. IvanNew

    IvanNew Member

    Jan 18, 2021
    Have you had an MRI scan? In any case, you could have Meniere as a disorder in the Eustachian tube, you do not lose anything by following the treatment for the Eustachian tube. If it works, congratulations, if it doesn't, you have time to join the Menieres club.
  3. bizzie

    bizzie New Member

    Apr 20, 2020
    I did a head MRI March 2020 to rule out MS, which they found fluid in the mastoid. I had a CT of the same area and nothing was found July 2021. I’ve tried Sudafed, Flonase and Nasacort as prescribed by my doctor, but haven’t tried other treatments. Thanks for replying.
  4. Rubygirl

    Rubygirl Member

    Oct 4, 2020
    If it walks like a duck and quacks like a duck.....

    So perhaps you don't have traditional "Meniere's" but there is such a thing as atypical Menieres (which is what I apparently have because my vertigo is not rotational but more the type you describe and the doctors had no better explanation so here we are).

    There is much information on here about things you can do for yourself in terms of supplements, diet, etc. and these have helped many of us when the doctors had nothing to offer. I suggest not waiting for any diagnosis any further but to take control.

    1. Read up on the John of Ohio regimen on here and start on that . It may not help immediately - give it a few months.
    2. Immediately cut your sodium intake to about 1500 mg/day. Read labels, buy some salt substitute, avoid processed foods, etc.
    3. Read up on the Herpes diet. Basically a lot of us on here feel there is a connection between these symptoms and latent viruses (Herpes, EBV, others that sit in our bodies for the rest of our lives and act up). The Herpes diet will have you avoiding high arginine foods, which feed viruses. Spoiler alert: vegetarian diets suck for us. Watch out too for a lot of milk alternatives (almond milk, etc.) and protein powders.
    4. I recommend going for a IgG allergy test as would be done by Genova diagnostics lab (or similar) as there are likely foods you are eating on a daily basis your immune system is reacting to
    5. A general high potency multivitamin with 50mgs/mcgs of the B's is a must - look for one with the methylcobalamin form of B12... that denotes a higher quality. This one is to cover all your bases and make sure you are not deficient anywhere
    6. If you are a middle aged woman, get your hormones checked. Not just estrogen and progesterone but your testosterone (which is very often too low! specifically ask for that!) and also look for subclinical hypothyroidism (specifically ask them to check T3 levels not just TSH). And of course there are estrogen receptors in the vestibular system so if menopausal and getting any symptoms of hot flashes or things like that find a supplement with Er731 (siberian rhubarb) and also red clover (Promensil) to help
    7. If you have had many antibiotics in your life (or a strong round of them for acne or some infection), read up on Candida - it's a yeast imbalance in the intestinal tract that can totally mess you up and cause no ed of unexplainable symptoms
    8. I go to regular visits with the chiropractor (for my neck that is always going out of whack as well as my jaw to make sure TMJ is not causing this) and also a craniosacral therapist. I don't know if that last one does much but I figure anything that might keep my head in check - I'm all for!
    So there are things you can do to help yourself. Wishing you all the best!
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