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  • Inner ear dizziness - in a league of its own.

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    Old 04-10-2004, 03:07 PM   #1
    Emsybobs
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    Question Inner ear dizziness - in a league of its own.

    Hi all, I dont know about you all but I have a job getting people to understand this inner ear rubbish!! I look fine, looks asthough I can function fine so I must be fine hey? Um no, far from it...I call this the invisible illness as noone has a clue - apart from you. Through the course of this illness, Ive had so many comments like "I feel dizzy too" or "ive had that when ive had a cold". it drives me absolutely insane and I feel that the majority of people, if not all, think this is LIGHTHEADINESS. Infact it is far from it.

    For those out there who have an inner ear diagnosis - how would you describe the dizziness you have/have had? I have different symptoms, different types of dizziness from motion (vertigo) varying from the environment swinging or my body swinging like an internal pendulum, or the up and down motion like being on a ship to intense dizziness in the head which is just weird - its like a huge dizzy feeling (not blimin lightheadiness!) which is like a snow storm or something spinning round and round v v fast inside which sends my eyes insane - jumpy, hard to focus, very stiff. Everytime I move my head things shift and the air feels very thick - like every movement I ever make is never right - its exaggerated or like im moving through thick air.

    WEIRD!

    Then I have the warped world feeling that the world looks just plain weird...it always looks like this, like a haze, like im not in it, huge brain fog, cotton wool packed in my head, like Im wearing v strange lenses or looking through a video camera lense...

    Then of course the memory, cognitive problems, low stamina, fatigue that comes with this as well as the depression, anxiety.

    I'm digressing. Sorry to waffle. Wanted to see how people explain inner ear dizziness.

    xxx

    Last edited by Emsybobs; 04-10-2004 at 03:21 PM.

     
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    Old 04-10-2004, 07:04 PM   #2
    kami-girl
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    Re: Inner ear dizziness - in a league of its own.

    Hi Emsybobs,
    I know exactly what you are saying! People just don't get it! Even the Dr.s. So far I have been dismissed as just over reacting and things could be worse! Ya right.

     
    Old 04-10-2004, 09:31 PM   #3
    Ninamarie
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    Re: Inner ear dizziness - in a league of its own.

    It's not an uncommon scenario Kami-girl, people have no real understanding of what they haven't experienced especially when it comes to ill-health it seems. It's not confined to those of us with inner ear, balance, vestibular problems, those suffering from chronic fatigue syndrome go through the same thing, "oh yes I get so tired too", or "you look so well". Or gastroparesis, you know people with paralyzed or partially paralyzed stomachs, some can barely eat, they have a terrible time of it, but what do they get from people, "ooohhh aren't you lucky I wish I could stop eating so much". I have a friend who suffers from an all over body itch, for years, a never-ending constant itch, itch itch, been everywhere, tried everything, spent thousands to no avail. But do people understand, not a bit of it. We understand broken bones, strokes, cancer, heart attacks but not the thousand and one other conditions that can strike the body at any time and for which very little can be done.

     
    Old 04-12-2004, 05:41 AM   #4
    Emsybobs
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    Re: Inner ear dizziness - in a league of its own.

    Completely agree Nina...I forgot to mention the off balance, staggering, disequlibrium I have also - unsteadiness too.

    Anyone else want to explain theirs?

    xxx

    Last edited by Emsybobs; 04-12-2004 at 07:15 AM.

     
    Old 04-12-2004, 07:35 AM   #5
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    Re: Inner ear dizziness - in a league of its own.

    hi emsy

    i will get round to explaining mine too, but a lot of symtoms like yours.....

     
    Old 04-12-2004, 09:02 AM   #6
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    Re: Inner ear dizziness - in a league of its own.

    Emsy,
    I have given up on trying to make people understand how I am feeling. They just don't get it because they have never had it. At one point I was able to tell people that you can kind of get how I am feeling by closing your eyes and turning around in a circle approximately 3 times...getting yourself to the point of having that off balance feeling but not seeing anything move. I then tell them, once they get themselves to that point to walk and that was basically how I felt when I was in motion. It never got to the point of stumbling or staggering just that off balance feeling. A couple of weeks ago I went to my old job and my previous boss said to me..."so, how are you feeling and how often are you getting your attacks..." I just grit my teeth and politely say, "oh...they aren't so bad anymore.... What are ya gonna do, unless we can flip a switch to give them our symptoms for a couple of days, they will just never know. Thank God for these boards...
    We are suppose to get about 5 days of rainy weather here in the Catskills so I am up for a bit of a loopy time.
    But on a brighter note....I just got a promotion at my job to take on the title of a supervisor and that includes a nice raise!!!!

    Emsy...keep up with the VRT, and I send you positive....soon to be better vibes from the United States.

    all the best,
    Kathy

     
    Old 04-12-2004, 01:52 PM   #7
    Emsybobs
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    Re: Inner ear dizziness - in a league of its own.

    Thankyou so much Kathy...v much appreciated. Like you, I would have gone insane if it wasnt for my friends on these boards! xxx

     
    Old 04-12-2004, 02:03 PM   #8
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    Re: Inner ear dizziness - in a league of its own.

    I'm also sick and tired of trying to explain to people how I feel. For my unbalanced feelings I tell them it's like having a shallow pan of moving water in my head. It makes me feel a little bit pulled to the left, then oops swings to the right, and sometimes to the front. For the pressures that I feel in my head, I try to make them remember of when they made themselves dizzy as a child by spinning around. To think about - not the visual dizziness but the sensation (pressure) in their brain.

    When I don't complain for a while (people in my immediate surroundings) assume that I'm getting better and seem surprised when I tell them that I'm not!!!

    I'm sick and tired of hearing myself complaining. I'm afraid that people will see me as a hypochondriac.

     
    Old 04-12-2004, 02:28 PM   #9
    Emsybobs
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    Re: Inner ear dizziness - in a league of its own.

    Yes I feel the same mpaiement and I too have the 'oh but youve been much better recently' when I havent gone on about it for a few days. I kindly tell them 'no its just i havent mentioned it'. Believe me, they'd know if I improved or it miraculously went - I certainly wouldnt stay quiet about it!!!

    Sending you a virtual hug mpaiment...
    xxx

     
    Old 04-12-2004, 04:02 PM   #10
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    Re: Inner ear dizziness - in a league of its own.

    Emsybobs,


    Yes! They would certainly know if I would be getting better!!!!

    Youpi!!!! Party!!!!


    Hugging you back

     
    Old 04-13-2004, 02:42 AM   #11
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    Re: Inner ear dizziness - in a league of its own.

    hi emsy

    mainly have the 24/7 push pull, bouncy, magnet, and as mpaiment describes the pan of water, tip here then there, being on an airplane in bad turbulance, the sensation of being in a dingy in moderate waves, or a ship in rough waves the worst time for me is when i am lying in bed i have no sence of where i am in space cos of the darkness it ranges from strong to moderate and sometimes mild, whenits mild i think its on its way out but then it increases again, sometimes i can link that to being unwell and other times it does its own thing, i cannot link it to anything....being in a car is the best time, its unnoticable then, till we stop and its back instantly....walking isnt to bad, but i get episodes of disorientation, for example when looking from the distance to putting change away in my purse, will throw me, i get episodes of dizziness but not the vertigo type, its like a buzzy pressure and i get a feeling that something will happen, like faint but i dont, i have an annoying left ear that is irritated by low sounds and sets off a muscle twitching that i can feel and hear, like insect wings beating, this stops when the sound stops...also that ear pops evertime i blow my nose and feels like the eardrum is being moved....overall they dont bother me to much, its the constant motion in the head that wears me down, even vertigo though horrendous at the time does stop.....and like u all, when people ask me how i am now i say yep, fine.
    ....................wish................ ..

    take care

    lorr

    xx

     
    Old 04-13-2004, 08:42 AM   #12
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    Re: Inner ear dizziness - in a league of its own.

    Hi Brina,

    How long have you been sick and how did it start?

     
    Old 04-13-2004, 10:09 AM   #13
    Billy1234
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    Re: Inner ear dizziness - in a league of its own.

    Why not ask said friend to hold there head on one side and run cold water into their ears, keep going until you see their eyes start to move from side to side then ask them to walk across the room. et voila!!

     
    Old 04-14-2004, 03:16 AM   #14
    brina
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    Re: Inner ear dizziness - in a league of its own.

    hi all

    mpaiement, i have had this for almost a year now, the way it started was pretty vague, firstly i had lost some energy and enthusiasm, felt not part of the world, run down, this may have been that my daughter had had a really bad case of flu, i think poss. it was in my system but didnt present in the same way as her....one day inthe easter hols last year, we took an all day trip to france, i didnt feel up to it but went for the kids, for the first time in ages i became car sick, we got home late and from then on i just started feeling worse, i couldnt stand visual input it looked wrong, as if i was wearing a wrong lense prescription and about a week after the trip the pulling, rocking etc started....at first i was told labs...after several weeks vn.......after the mri ....the usual peripheral vesib dysfuntion.....can u update me how yours started?

    take care

    brina

     
    Old 04-14-2004, 05:58 AM   #15
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    Wink Re: Hello Emsybobs!

    Hello, just wanted to say that I have exactly the same symptoms as you -especially that "internal pendulum" thing!! I really hope you are starting to notice an improvement - you seem to have been on the vrt for some time havent you? Is it helping yet? As for me, I got to the two and a half month point last week and really thought that things were getting better: the fog cleared a lot and the sensation that I was falling into the bed at a thousand miles an hour every time I fell asleep practically disappeared. But then I started a new Cawthorne Cooksey excersise last week (the one where you have to walk across the room while looking at a point) and now I feel like a total grot bags again. The physiotherapist warned me that it is a provocative excersise but I wasnt expecting it to be this bad! - Im beginning to wonder whether things are really improving at all and last weeks improvement was just a fragment of my imagination . Does this sound familiar to you?
    Regards,
    Ella

     
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