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Ménière’s? Drop Attacks? and where to go from here?

Discussion in 'Your Living Room' started by KarenL, Dec 2, 2019.

  1. KarenL

    KarenL New Member

    Nov 26, 2019
    Sunset Beach
    Yes this is a bit long but I have not found Answers This looked like a good place to start-
    I have have this non stop vertigo/ nausea/ falling/ fullness in left ear and horrendous tinnitus. I went to ent. After tests found right ear had Benign paroxysmal positional vertigo, the falling.Pt rectified the matter on the right.

    And Only the endolymphatic test indicated Menieres for the left, 148 with (150-200 indicating meneires)
    But because of the lack of nystagmus. Doesn’t diagnose me. Also my hearing is very good just NOT in crowds. Sends me to neurologist

    Since then I’ve been to a neurologist who is treating me for vestibule migraines using Topamax. The topamax has helped greatly at least After 6 months of Valium and topamax I can function. I don’t know if your body just adapts? I can stand for 20-30 min sit because of motion sickness.
    But after an eye test in June I was thrown into my first drop attack by her manipulating a card back and forth from one eye to next. ( thus creating an external nystagmus of sorts?) after that one I had 3 others in close succession.
    Yes like a hand spiraling me down convulsive, slowly but had to tell myself to get up. Once sitting, my eyes tunnel out to blackness, I don’t black out. when that leaves. My eyes nystagmus. Then the back of my brain hardens, holds like that then releases and feels like blood flows once again tingling.
    Then I am back to flat on my back and on Valium because of vertigo but have no diagnosis of Ménière’s.
    Now recently I have had 2 mild ones. I didn’t drop. One just 2 days ago at a place with 2000 people. I guess the noise triggered it?-where I just spurt unemotional tears- couldn't really articulate well- my tongue felt thick, and had all the same symptoms as a drop attack, in my head, just sitting though, the disconnect, visual blacking out, tunneling,finally the feeling of hardening in the back of brain and then a rush of blood flow. No violent falling but still the same sequence of events in my brain. I thought I could handle going out since I had been managing my symptoms better the past few weeks. I guess not. Now back to square one Afterwards- tired need sleep, nonstop vertigo. Going on for a year.

    But this time ended up in ER next morning because neurologist couldn’t see me and I couldn’t stop the room from spinning or stop the nausea and couldn’t sleep,talk, or walk. They IV’ed me meds and It did end up in migraine later that night. Yes there are def some overlapping symptoms.

    QUESTION: Are these also drop attacks?

    Sooo here’s the kick- my neurologist only treats migraines. Ent says it’s central vestibular which this neurologist won’t treat and this ent doesn’t think it’s full on Menieres?!?!
    Feel like Alice in the looking glass-
    just wonder if anybody has had similar experience or found articles/ medical centers that look into these symptoms as a whole and have found direction. Looking for an arrow to point the way on coastal NC...
    Last edited: Dec 2, 2019
  2. Autumninthefall

    Autumninthefall Member

    Aug 10, 2019
    Gee, sure seems like Ménière’s. Drop attacks are a real nightmare. Thought about going to see a Neurotologist? I know you said coastal NC, but thought about going to Duke? I’d go see Dr. Calhoun Cunningham, and that’s just taking a quick look. Pretty much all of us here have been done the second opinion road. You’re not alone. Good look on this nightmare journey, but you’ve got support. Sending hugs your way. I’m sure other members will send be sending you advice and support.
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  3. wendy

    wendy Member

    May 18, 2019
    What you describe sounds very complicated. MAV, BPPV and possibly meneires. Lots of sympathy. I would also recommend a neurotologist. Sending my support.
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  4. Clare

    Clare Active Member

    Mar 31, 2018
    I agree -- a neurotologist has the training to bridge between the ENT and the neurologist, which is the place where Meniere's resides. I hope you can find a diagnosis that fits, and you can get on to building a better life.
    Last edited: Dec 3, 2019
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  5. melissa

    melissa New Member

    May 23, 2018
    Travel to go see a specialist. It is worth the time and expense to have someone with expertise make a diagnosis and give a second opinion. I agree that a nuerotologist is a good bet. The one I see in Boston is great and I wouldn't go anywhere else.
    Drop attacks suck. I have not found a way to prevent them, but find that valium under the tongue, if you're spinning for a while afterwards, cuts the spinning in 20-30 minutes. I should say that I have learned to avoid certain visual experiences that trigger things for me (video games, 3D, IMAX, virtual reality, heavy computer graphics, any kind of computer design work, flickering lights, strobe lights, etc.).
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