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Looking for new insight ...

Discussion in 'Your Living Room' started by dscubs, Dec 10, 2019.

  1. Dec 10, 2019 #1
    dscubs

    dscubs New Member

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    Dec 10, 2019
    Hi all,

    I have not been here for a couple of years, but back seeking new information.

    My first attack of tinnitus/vertigo occurred at age 15. Then a cluster of vertigo attacks in my late 30's, then nothing for 10 years. At age 50, tinnitus/vertigo returned intermittently; I would have a couple of bad attacks in a cluster, then nothing for months. But at age 60, tinnitus became bilateral and more constant. Less vertigo, but more frequent dizziness, and drop attacks, ranging from mild/few seconds to being knocked off my feet as if I'd been flipped from behind. Now, at 63, I've tried diuretics, lower sodium, betahistine, a course of prednisone, JOH regimen, and dexamethasone injections - but none of those interventions made much of a difference. I'm in good shape for my age and still run a few days a week. I use hearing aids which help. But there are some days when tinnitus keeps me from functioning; dizziness or a drop attack usually follows. Next interventions from Mayo Clinic include sac decompression or gentamicin. I also see a chiropractor for upper cervical adjustments, and a nutritionist, who took me off sugar/wheat/dairy and has been giving me specific supplements for the last 6 months. The nutritionist says that she thinks my body is making progress toward healing/reversal of menieres, but I need to be patient. Fasting for a day or two always helps to relieve tinnitus and dizziness - for a couple of days to about 2 weeks. Determining triggers have been a mystery - it's been hard to pattern, even with a diary. I have a few cards yet to play: acupuncture, a different chiropractor/nutrition approach, restart the JOH regimen (I started the supplements all at once), or maybe the BennyHill strategy.

    Looking for suggestions, please and thank you!

    dscubs
     
  2. Dec 11, 2019 #2
    Onedayatatime

    Onedayatatime Active Member

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    Have you explored MAV yet? Please consider the MAV diet discussed by Buchholz in his book "Heal your Headache". Migraines manifest themselves in numerous ways, one of which mimics Menieres symptoms of dizziness and vertigo. In my case, I never actually experienced headaches.
     
  3. Dec 11, 2019 #3
    MaryR

    MaryR New Member

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    Wow, you are a veteran with this Menieres stuff. Sounds like you’ve done so much over the years to be as healthy and (relatively) unaffected by the Menieres as you’ve been over the past 40-some years.
    I can’t give you any specific advice because I am earlier in my Menieres journey, but I’ve always told myself that my line in the sand is a drop attack. if I ever have a drop attack, even once, that’s when I forget supplements, dietary restrictions, medications, and move on to the big guns.
    I’m sure you’ve already done tons of research on this, but a website that I found to be a treasure trove of information is Dr. Timothy Hain’s info on Menieres. I am not his patient, and have never spoken with him directly, but from what I gather from his website and his research publications, he is a proponent of the Low dose Gent.
    Chicago Dizziness and Hearing: Diagnosis and Treatment

    Good luck! Keep us posted on your research and decision. Thinking of you.
    Warmly,
    Mary
     
  4. Dec 13, 2019 #4
    AnneT

    AnneT Well-Known Member

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    Hi Dscubs

    My understanding is that the sac surgeries are not much better overall than placebo... but I trust the Mayo Clinic, so maybe I'm missing something! I know some on this forum have had mixed results - some good, some neutral, some bad with the sac procedures.

    You can check out my thread How Do You Know if the Gentamicin Worked for my experience with gentamicin. My recovery from the first shot was perhaps rougher than most people would have, as I had some positional vertiogo created or stirred up by the shot - most people don't experience that. I would still say gent is a good place to start, since it is technically easy.

    You'll find lots of good experience and info here (and, I concur, on Dr. Hains' website). Do your research and go with your gut! Good luck, and keep us posted!
     
  5. Dec 13, 2019 #5
    dscubs

    dscubs New Member

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    Dec 10, 2019
    Hi Onedayatatime,

    Thanks for responding. I have not heard of MAV; I'll check it out. Thanks!
     
  6. Dec 13, 2019 #6
    dscubs

    dscubs New Member

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    Dec 10, 2019
    Thanks, Mary.

    Fortunately, I've only had 3 drop attacks in about 2 years' time. Fortunately I was home all 3 times; but was in the garage on the last one, and fell on my wheelbarrow, gashing my forehead and arm. Most of those attacks are milder. I have checked out the Chicago Dizziness website; their approach is much like Mayo Clinic's. The ENT there tells me that gentamicin is good for vertigo, but not tinnitus, which is the bigger problem right now.

    dscubs
     
  7. Dec 13, 2019 #7
    dscubs

    dscubs New Member

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    Dec 10, 2019
    Thanks, AnneT!

    My problem with the gentamicin treatment (my understanding drawn from conversations with the Mayo ENT's, is that my menieres is bi-lateral. So if the gent kills the vestibular function in one ear, and the other ear malfunctions, then I'm really down the creek. That's why I'm seeking interventions that treat possible underlying conditions.
     
    • Agree Agree x 1
  8. Dec 16, 2019 #8
    AnneT

    AnneT Well-Known Member

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    Oh yeah that makes sense. Sorry, I didn’t realize you are bilateral... this disease sucks so bad.
     
  9. Dec 18, 2019 #9
    teesdale

    teesdale Active Member

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    Mary, I would not draw the line on one drop attack. I've had Menieres since 1990. I had a drop attack on Thanksgiving evening in 2008. It was crazy but it was my only one in almost 30 years with this disease. Theis disease is too unpredictable to warrant any lines in the sand.
    All the best,
    Teesdale
     
  10. Dec 19, 2019 #10
    redwing1951

    redwing1951 Well-Known Member

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    MaryR my first drop attack sealed the deal for me. I had never experienced anything like it. Matter of fact I had to look it up to understand what it was that happened to me. I immediately made an appointment with my OTO and after consulting with him I scheduled my laby. Drop attacks can be life threatening. I was lucky that I was out walking with my husband when my first attack happened. I thought someone had come up from behind me and shoved me forcefully to the ground. I tore my rotator cuff, had several bruises and a mouth full of dirt. I can't help but wonder what would have happened if I had been driving or on my bike or on a ladder. I think you are correct in drawing the line in the sand if you start having drop attacks. I pray that you don't ever experience one.
     

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