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The dreaded drop attack

Discussion in 'Your Living Room' started by Paris 48, Sep 21, 2020.

  1. Paris 48

    Paris 48 New Member

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    Like to get some input on drop attacks.I have bilateral MM since 2000.
    Allmost totally deaf,left ear cochlear implant.Not much vertigo anymore but balance pretty well shot.I have had one drop attack several years ago in my home,slammed to the floor but beside some bruices got back up,dazed but otherwise ok.Fast forward,last April husband and I went to Walmart,after we got done shopping came out,husband put cart away while I loaded the truck,
    opened door on passenger side,wham it hit went down with full force on blacktop,screaming for my husband.My husband found my processor for
    cochlear implant about 3 feet from where I was laying.Took several people to get me in truck.I landed on my right shoulder,long story short,dislocated shoulder and severly damaged rotary cuff.Had to have total shoulder replacement.Suffice to say I can`t fall like that anymore,it will most like kill me the next time.The terrifying thing is you dont have a split second to act,you just go down.I am taking Ativan now to calm the vestibular nerve.I can deal with regular vertigo but this crap is beyond scary.
     
  2. Nathan

    Nathan Well-Known Member

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    Subsurface ocean, Europa
    I'm so sorry to hear that, Paris 48.

    After roughly 525 million years of natural selection one would assume, if not lament, that the vestibular system would be, or should be more robust.

    Yet here we are, a small percentage of bipedal primates, struggling to function, in 2020, due to a malfunctioning sensory system that's 500 plus million years in the making, while searching for solutions that allow us to remain upright 51 years after Neil Armstrong walked on the moon.

    The universe can be so terribly strange at times.
     
  3. Marta

    Marta Active Member

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    Paris48 I am so sorry to hear you had to experience this. I hope it never happens again. Are you under any ENT care?
     
  4. IvanA

    IvanA Active Member

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    Hello, I am very sorry about your illness. But I am surprised that since 2000 you have only tried Ativan (Lorazepam). Haven't you tried other things?

    In this forum there is a lot of information about things you can try, I personally have found a lot of relief and help with dizziness taking Betahistine. Specifically, I found that I needed to take 24mg three times a day on days when I was very dizzy and after doing several tests it seems that my maintenance dose is 12mg twice a day. It is a long-term drug, it takes two months to work and works best after six months. Dosage can vary from person to person, but I wouldn't rule out betahistine without at least taking 24mg three times a day for 2 months.

    Personally, I know that it works for me because I stopped taking it four times to see what happened and in 48 hours I had intense dizziness.


    Other things that are helping many users in this forum is:
    1-Taking Antivirals
    2-Look for dental infections
    3-Allergy tests (food, animals, metals, dust, etc).
    4-Some have improved by improving their intestinal flora by giving up gluten, processed foods, a low-carbohydrate diet and taking pro-biotics and pre-biotics.


    What seems to work for most of us is to remove some or all of these things from our diet: Caffeine, theine, sugar, sweeteners, salt, and alcohol. It depends on each person, there are people who with a shot of tequila give them an attack of vertigo, but nothing happens to drink coffee and vice versa. I personally had three beers a week ago to test myself and there was no bad reaction, but one week when I ate a lot of salty things I got dizzy.


    Almost a century ago we began to manufacture nuclear bombs and with the amount of them we could reduce the Moon to dust, but in 170 years there was no money or resources to investigate this disease that I am convinced is not as "rare" as it seems if researchers were given funding to accelerate their studies and clinical trials. Furthermore, I am quite convinced that this can be cured with pills in the future, no surgery or injections.
     
  5. Paris 48

    Paris 48 New Member

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    Thank for your replies.I have been under treatment for many years and different meds.Still taking water pill every day.Back in 2007 had shunt put in right ear for vertigo,did not work.I have classical bilateral meniere`s disease and salt is def a trigger for me.There really isn`t much out there for this and since I am bl can`t have any destructive surgeries.From what I have been told,there is really nothing they can do for drop attacks.I am back on low salt diet,hopefully I wont have another fall.
     
  6. IvanA

    IvanA Active Member

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    I insist that you get and try Betahistine for 2-3 months, start with 24mg every 12h. In the US it is not being prescribed, but in Europe and Canada it is and for many of us it works.

    Also try antivirals, in the database of this forum there is a clinical trial of a Doctor in the USA who administered antivirals to more than 200 patients and 90% improved. These days another user has opened a thread reporting that the same doctor has just published a detailed book with all his research and tests on the viral cause.

    And finally you can try Pycnogenol (sea pine extract) it is one of the few antioxidants that has a clinical trial behind where 90% of patients showed improvement in all their symptoms after 3-6 months taking it.

    Don't give up, try things until you find something that works for you.
     
  7. Jimii

    Jimii Member

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    Paris 48,

    Why can you not have any destructive surgeries?
    You would be a prime candidate, I would think. Drop attacks and you are already deaf, plus you already have the CI.
    Maybe it is time for a second opinion?
    I wish you the best, and keep us updated.

    Jim
     
    • Agree Agree x 1
  8. Paris 48

    Paris 48 New Member

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    I am bilateral,dont have a good ear to take over when the balance nerve is cut in one.
     
  9. Autumninthefall

    Autumninthefall Active Member

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    Hi Paris,
    When I had my first drop attack it was dangerous like you describe. I got a nasty concussion, but luckily it was “just,” a wooden floor. My drop attacks didn’t stop. It took me a couple of years, but eventually I opted for a surgical labyrinthectomy. It’s not that you can’t have one. It’s a matter of weighing your options/deciding what’s right for you/what you are willing to live with(and without). It’s not an easy choice to make, even when you know your life *may be at risk, as you have no idea if you’ll have another, or if this was just a one-off. Especially as you know you’re bilateral. For what it’s worth, I’ve had uncommon complications after my labyrinthectomy, and I’d still have one in the other ear if I develop drop attacks again. Sending you virtual hugs for dealing/healing from your latest drop attack. Unless one has been hurt during a drop attack,(or serious episode of vertigo) I’m not sure one can understand how truly debilitating this illness is for us.
    If memory serves, I believe most of the regulars on this forum have been hurt during a fall from a vertigo episode, drop attack, or both.
     
    • Like Like x 1
    • Agree Agree x 1
  10. Bulldogs

    Bulldogs Well-Known Member

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    Hello Paris....

    They are definitely a matter of life and death. Nothing to fool around with.

    Since your balance is pretty much gone and you have a cochlear implant. Why not just kill the ear causing the drop attack with gentamicin shots or if it’s your ear without the cochlear implant just take it off line with a laby.

    Be safe my friend. Nothing to fool around with.
    Joe / Bulldogs
     
    • Agree Agree x 2
  11. IvanA

    IvanA Active Member

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    I do not disagree with the previous recommendations, but it seems to me that before opting for surgery it would be worth trying other safer and more conservative things. At least betahistine to relieve symptoms and antivirals to be sure that it is not a viral cause, if antivirals work, you should regain some of the lost balance and maybe a little hearing in the ear without a cochlear implant.
     
    • Agree Agree x 1
    • Informative Informative x 1
  12. Jimii

    Jimii Member

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    Paris 48 has a real dilemma. Bilateral. How do you know which side is causing the issue?
    You can't cut both I assume. 50/50 shot at cutting the right one. I wonder if there are any tests to discover the offending side? Is there even an offending side?

    Jim
     
  13. Cheryl

    Cheryl Active Member

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    Bulldogs, How would a person know which ear caused a drop attack?
     
    • Agree Agree x 1
  14. Paris 48

    Paris 48 New Member

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    I had 3 drop attacks over the years and have allways fallen to my right.
    Also when I still had active vertigo it seems I was allways leaning toward my right side,so I would say the right is worse than the left.I still have balance left but it is not great,have to watch myself esp. in the big box stores.I have also talked to my Doc. about the VNS and he said they would not do it as long as I have a reasonable amount of balanece left because I could end up in a wheelchair.So on that end I am seriously considering giving my age(64)getting a upright walker with wheels esp for walking on blacktop wich I am terrified of anymore.Hate this &^%*$#$ disease,had it for twenty years now.
     
    • Agree Agree x 1
  15. Autumninthefall

    Autumninthefall Active Member

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    I don’t know about falling in a particular direction, but I can say with 100% certainty that my drop attacks were caused by my LEFT ear, and I fell backwards, and landed on the back of the RIGHT side of my head during my first drop attack. My drop attacks were unremitting, and I was left with crazy popping in my left ear each time they happened. They only stopped once I had the surgical labyrinthectomy.
     
  16. Autumninthefall

    Autumninthefall Active Member

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    THAT is an excellent question Cheryl. I may be slowly but surely getting a bum right ear, but it seemed okay a few years ago, making the differentiation pretty easy. No symptoms=right ear wasn’t the problem. I’d had numerous tests on both ears, and was always told the abnormalities were in my left ear. When I also had crazy, popcorn like popping immediately after drop attacks, but never at other times, it seemed to narrow the origin for me. For anyone reading this and wondering, I’m talking about very different popping from what many MD sufferers, self included, regularly experience.
    *Please note it is quite possible a bilateral individual will correct my ignorance. :)
     
  17. IvanA

    IvanA Active Member

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    Sorry if I insist, but please try betahistine and antivirals for 6 months.

    Clinical Data Supporting Antiviral Treatment of Meniere’s Disease

    1 year on Valtrex (antivirals)

    SERC (Betahistine Hydrochloride) and the Meniere's Patient
     
  18. Woodsrider

    Woodsrider Member

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    Being bilateral sucks. My issues are very similar to Paris 48. Bilateral since 1996 and deaf in the left ear. I don’t have an implant but use a cross hearing aid system. My left ear is the one that is most active in causing my drop attacks according to my specialist. He has recommended gent injections to deaden the ear. I have tried multiple antivirals and I take betahistine. I’m on the fence about the injections
     

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