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Discussion in 'Your Living Room' started by Raider Nation, Aug 2, 2019.

  1. Raider Nation

    Raider Nation New Member

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    Hello all, I am also a meniere’s sufferer. I just found this site this week and have been reading as mich as possible. Does anyone have issues when bending down or looking down? So far what I have found out is weather changes, looking down or bending down/over, and tiredness are my a few of my main triggers.
     
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  2. three4rd

    three4rd Member

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    Yep...for sure. Unless I'm having a really good day - as in symptom free - otherwise, absolutely. I used to be able to work on things with my head looking up at something (like under a kitchen sink working on plumbing, etc.) Can't hardly do that anymore. Or else, quick changes in head direction. I know I'm in for some sort of attack when I can't recline too far on the couch - induces spinning sensations as does, of course, laying in bead depending on the side.

    At any rate...welcome to the forum! Hope you find info here that will be helpful to you! At the risk of being overly inquisitive, might I ask what meds or other procedures you're trying to help relieve symptoms?
     
  3. Onedayatatime

    Onedayatatime Active Member

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    1st time I noticed such issues was 12 years ago. I went to see my doc as i would get dizzy everytime I crawled under the car for maint. It slowly got worse.
     
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  4. Raider Nation

    Raider Nation New Member

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    Three4rd, thanks for replying. I am currently on betahistine and nortriptyline. I have seen my gp, 2 ent’s, a neurologist, a naturopathic doc, chiropractor, a nucca specialist, and a faith healer. Ha. Hey, i’m A believer and am trying everything. The reason I registered was because of the brain fog. What I did find was when I had extreme fog I took activated charcoal and it cleared up pretty quickly. I am not sure why that worked, but it did. One of the many docs I seen said it was a coincidence, but I think he is wrong. So, if anyone reads this be sure and check with their doc before taking the activated charcoal since it binds chemicals and will probably absorb any other meds you are on. I hated that foggy feeling, so personally I would do it again. Currently, I am averaging one severe attack per month. Once they happen I go back to that desperate, depressing feeling where I hate to go anywhere. I have cut back on my sodium and stopped drinking alcohol all together. I haven’t had caffeine or a beer in a year. I just pray that someday this will all be over.
     
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  5. Raider Nation

    Raider Nation New Member

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    Onedayatatime, I get that feeling from light to dark or vice verse. I also bought blue blocker glasses. Going into a grocery store or department store, I would immediately get dizzy. That has calmed down some, but I use those glasses when going in. I don’t want to chance it.
     
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  6. Nathan

    Nathan Active Member

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    Welcome to the forum, Raider Nation.

    Light sensitivity is indicative of migraine-associated vertigo (MAV). Many members here, myself included, are lucky enough to feature both Ménière's & migraine-associated vertigo.

    This may be caused by benign paroxysmal positional vertigo (BPPV), of which the Epley manoeuvre may correct.
     
  7. California Sun

    California Sun Active Member

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    Welcome. This is a really good site. Lots of nice, supportive people and lots of information. I have occasionally had a positional-type vertigo that goes away when I change positions, but this seems unrelated to the Meniere's because I have experienced it even when I have no symptoms. This generally lasts a few days at most and then resolves. Weather and stress are and always have been my main triggers, but I do tend to feel worse when I am tired. I have dealt with this for almost 5 decades and have not been able to identify any other triggers.
     
  8. Saera

    Saera Active Member

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    Welcome and I’m sorry you have this asshole syndrome/disease/whatever they want to call it.

    Triggers for me are sodium and caffeine and stress and being overly tired.

    I’m currently going through gentamicin treatment and may have a labyrinthectomy at the end of the month. Remains to be seen.

    I just think this condition is the worst. The symptoms are awful and the anxiety it brings ONLY fellow sufferers can truly understand.
     
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  9. Onedayatatime

    Onedayatatime Active Member

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    Second time today I can laugh. Thanks Saera. At least now I know why I'm afflicted. ;)o_O:rolleyes::confused::D
     
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  10. Raider Nation

    Raider Nation New Member

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    Thanks all for replying. For what it’s worth one of the ent’s had given me a pamphlet of fast food places with the highest sodium. Before I saw him I had eaten at one of the top two and had an attack hours later. The other in top 2 I had a couple weeks ago and had an attack the next day. Now I don’t know if it was sodium or msg. But I will not be eating at those establishments anymore. Lol
     
  11. Saera

    Saera Active Member

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    I try to eat fresh and at home. No sodium faves. Happy to give some ideas of you’d like!
     
  12. Raider Nation

    Raider Nation New Member

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    I’m just not a big vegetable person. So for me and my fam it’s a lot of grilled and baked no salt/no sodium seasoned meats and i’ll Force down some veggies if I have to.
     
  13. Saera

    Saera Active Member

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    Whatever works my friend!!
     
  14. Raider Nation

    Raider Nation New Member

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    So this is a little strange, but does anyone also have what I call little moments when laughing too hard or stretching or yawning? I feel like I’m about to get dizzy when these things happen. It’s like It does something to my eyes or could it be doing something with the fluid in my ears? I’m going to another neurologist in 2 weeks. I’ve been waiting almost a year to get into him. I’m just not sure what else can be offered, except maybe the gentamicin shot. Do I want to do this shot if I’m only averaging 1 bad episode per month. I pretty much struggle daily, but only have the puking and spinning around once a month. I’d appreciate your thoughts?
     
  15. AnneT

    AnneT Active Member

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    If it’s for sure Menieres I’d say yes go for the gentamicin. Wouldn’t it be awesome to be free of monthly hell?

    I can’t recall if you’ve had a VNG and hearing tests?

    I found Dr. Hains’ articles about low dose gentamicin helpful and reassuring.

    So far, I’m glad I did gentamicin. (Before gentamicin: Vertigo every few days, VNG at about 50%, Hearing not so great). Yes I’m off balance but my life is opening up again. My hearing is no worse.

    And I now have the reassurance that, if the vertigo returns, I’ve jumped through the apparently required gentamicin hoop, and will be offered laby or VNS.

    But these choices are hard, and so individual.
     
  16. Raider Nation

    Raider Nation New Member

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    Thanks AnneT, when you say “off balance” would this mean that the shot would probably cause me to miss work? At this time, I Drive a company vehicle every day and some days are more difficult than others. I’m on ladders and sometimes drive at LEAST 50 miles a day. The “off balance” thing kinda scares me. I have had the vng and hearing test done.
     
  17. AnneT

    AnneT Active Member

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    Hi Raider
    Before gentamicin, I was quite limited in my driving because my vertigo attacks had become so sudden (no warning) and brutal (falling). I was having such frequent attacks that I’d quit everything and was desperately seeking a labyrinthectomy - I really didn’t care if I was off balance and deaf. I couldn’t live like that anymore. So laby or suicide... but all the doctors pushed for trying gentamicin first.

    After the gentamicin injections, I am back to driving etc. And rejoining life, baby steps at a time.

    The off balance feeling, for me, is a totally fair trade off to be vertigo attack free. The world looks bouncy (oscillopsia) when I start walking, when I brush my teeth or wash my hair. For a few weeks a cane was helpful but I don’t need it anymore. If I rush around the house , I might just feel like I’m in a boat. Nothing terrible, I just have to be mindful. My vestibular Physiotherapy guy expects I’ll still get improvements.

    I had some level of this dysequilibrium even before the gentamicin, as my right vestibular nerve was already 50% dead.

    If you go for the gentamicin, you may still be able to work. I would suggest that you let work know that you may need sick leave sometime between getting the shot up to about 4 weeks after - it might be a day, or weeks - everyone is so different. The effects come on veeerrrrrrryyyy gradually. I had some time where the driving, turning my head left and right, was just too uncomfortable. But that passed. And ladders - you’d just have to go slow and see how it feels day to day. Err on the side of telling work it won’t be safe for a few weeks.

    I’m 54. I suspect that if I were younger, the rehab would be easier.
     
  18. AnneT

    AnneT Active Member

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    So how is your hearing and VNG results? Are you a spring chicken or an old rooster?
     
  19. AnneT

    AnneT Active Member

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    PS More about the off balance feeling- I don’t actually fall or anything. I’m tired from the extra effort my brain has to do, but everything is improving.

    I went up a ladder to clear our eaves troughs, probably earlier in my recovery than I should have, but I was fine as long as I went slowly.
     
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  20. Raider Nation

    Raider Nation New Member

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    Thanks for the info AnneT, I am 48. Hearing is gone on the left side. Besides the small moments of dizziness, lately, it’s my vision that messes with me. Hard to describe. I feel like someone is poking my eyes out and I don’t know if this happens to anyone else, but when I wake up some mornings it feels like my eyes are stuck (they are not). Again, it’s hard to describe. I’ll see what this neurologist says in a few weeks, but i think he will suggest except gentamicin. I did vestibular rehab for about 6 weeks (2 times per week) last year and i’m better since then but would love to be even better.
     
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