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

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    Old 04-14-2004, 08:51 AM   #16
    Norbysgirl
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    Re: Inner ear dizziness - in a league of its own.

    Emsy,

    Thanks for starting this thread! It's definitely true that it's hard to get others to understand. The problem I had was the feeling that people just sort of start to glaze over when you talk about it too much, like they're sympathetic to you not feeling well and all, but after a while it's like okay, move on and talk about something else . . . I just started downplaying it or not talking about it at all because I knew they couldn't possibly understand anyway. It's very isolating, isn't it?

    My symptoms were, in hindsight, seemingly mild when compared to others on this board, though at the time I was totally wigged out at going from a perfectly healthy life to a mess that I couldn't describe and docs couldn't tell me exactly what was going on. The brain fog really killed me. I hated that sensation of moving my head around and feeling like everything was tracking in slow motion, like it took a few seconds for the world to catch back up with my head, if that makes sense! One of my first stops was to the optometrist my sister works for to have my eyes checked out because I was sure there was some sort of visual component to what was happening (mind you, at that point I knew I'd had an episode of BPV, but that was gone and I didn't yet know why -- inner ear damage -- I was still feeling so weird). I always felt like I should squint or something to try and get clear vision! Also, by the time I was 8 months into it I started to have the short-term memory problems, difficulty finding the right words sometimes, and trouble with transposing letters when I wrote or typed (still have that at times). I had never had that before in my life and could really relate to my sister-in-law who is dyslexic. And then of course there was the anxiety, strongest in the early morning. I went on Xanax for a month at about month 4 to get some relief, which it gave me, but then I think it started making me depressed even more, either because of its effects as an anti-anxiety drug (meant to bring one down a bit) or because I was bummed about having to take drugs. I was relieved when my ENT took me off it.

    The last problem for me was the trampoline walk which came on with the second episode of BPV at month 6, and it took 6 months for that to subside. My motion sensations only happened when I was up and moving about (walking, etc.) on my own. I could drive or ride in a car just fine, like others have said here, and I could even ride a bicycle with no problem. Just the walking on my own gave me a sensation of up and down motion -- also actions which required up and down like bending down to pick something up, etc. I'm in my 16th month now and basically operating at 100% (knock wood). Here's wishing everyone the same -- and soon!!

    Terri

     
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    Old 04-14-2004, 10:41 AM   #17
    Emsybobs
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    Re: Inner ear dizziness - in a league of its own.

    Thanks for that Terri....I can identify which all that you say...I too find the slow barin cognitive stuff a nightmare...I also hate the slow motion thing when you move around and turn your head...

    Oh and the trampoline walk...how horrendous is that?!

    Did you notice Terri that things got better slowly. Just in the past 2 days ive noticed my dizziness in the head as I call it has lessened a bit (this is prob my worst symptom and the most disabling)...but im noticing the off balance a bit more cos of this. Praying this ends soon. Hugs xxx

     
    Old 04-15-2004, 10:44 AM   #18
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    Re: Inner ear dizziness - in a league of its own.

    Hi Brina,

    My dizziness started 2 1/2 years ago. Like you it was gradual. Now that I think about it, my first symptoms started a long time before the dizziness began. Sometimes I had VERY VERY MILD sensations of desiquilibrium especially in the shower with my eyes closed or in the darkness before going to bed. These symptoms were so mild that I didn't think anything about them. At the end of September 2002 I was shopping and all of a sudden I felt being pulled to one side (more intense than before but somewhat familiar so I didn't panick) but after a week of feeling pulled to one side the 24/7 dizziness started and it never went away since then and doctors have no idea what is wrong with me.

     
    Old 04-22-2004, 04:02 AM   #19
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    Re: Inner ear dizziness - in a league of its own.

    Quote:
    Originally Posted by Emsybobs
    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.
    Yes - "Oh, I feel dizzy too". Aaarrggh! Not like this you don't !!!


    Quote:
    Originally Posted by Emsybobs
    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.
    My 'inner ear' gives me varying symptoms, a lot of which are like yours. For me, the worst it gets is the 'drop-fall' thing where I suddenly get a spiralling feeling (possibly like your snowstorm spinning thing) and have to get to the floor quickly or I'll end up there anyway! Luckily this isn't too regular, but I think it adds to me being anxious about it happening in public when people are going to look at me and think I'm drunk or drugged-up. The pendular motion and ship motion are pretty common for me, and are set off pretty badly when I walk anywhere, but not every time I walk. I think it gets set off by the slight bobbing up and down motion of walking. I've also had the focus and jumpiness problem with my eyes, which I find quite scary. Moving around day-to-day, I tend to walk into door frames at times, hit the walls in the house when I'm moving about, bump my elbows into things and generally act clumsy.


    Quote:
    Originally Posted by Emsybobs
    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
    I don't quite get the lens thing, more like a tunnel-vision sort of effect. Like there's a tube in front of my head stopping me from seeing a wide view. I'm glad to know * that you get the memory, cognitive, stamina, fatigue, depression and anxiety because I didn't think that could possibly be caused by the inner ear problem and I get all those too. I've found typing the simplest email really difficult recently because I can't concentrate on writing coherently. I've tried to have conversations with people on the phone and can't get the right words out, even though I know what I want to say.

    It's sooo difficult to explain this to anyone who hasn't had it. I tend to use the 'feel like I'm very drunk and the room is spinning' analogy, because most people have been in that state at some point and remember how nasty it is. I tell them it's like that, but without the euphoria that the alcohol adds.

    I'm really glad I found this place. Sharing this problem with others takes away the 'lonely' feeling that I get with this - like nobody understands or empathises.

    Take care,

    Jim

    * Not glad you get them, hope you understand

     
    Old 04-22-2004, 05:55 AM   #20
    Emsybobs
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    Re: Inner ear dizziness - in a league of its own.

    Really glad Jim this has helped you - these boards help me daily...By the lens thing I mean the world looks surreal, warped, weird, like when you're drnk - it looks not real particularly in the dark. Dont get the tunnel vision thing but everyone is different...Oh yes I know the phone thing and cognitive thing all too well...I now dont ask questions often in conversations for fear of getting it wrong or it has already been said! xxx

     
    Old 04-22-2004, 06:37 AM   #21
    Jim65
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    Re: Inner ear dizziness - in a league of its own.

    Quote:
    Originally Posted by Emsybobs
    Really glad Jim this has helped you - these boards help me daily...By the lens thing I mean the world looks surreal, warped, weird, like when you're drnk - it looks not real particularly in the dark. Dont get the tunnel vision thing but everyone is different...Oh yes I know the phone thing and cognitive thing all too well...I now dont ask questions often in conversations for fear of getting it wrong or it has already been said! xxx
    Hi Emsy - it looks like we're talking about the same sort of thing with the visual distortion. It's something I haven't bothered to tell anybody else as I know I'll get the response "but I thought it was your ears that you had the problem with..."

    Seeing as we both appear to have the same problem, have you found anything that helps - either to get better or relieve symptoms? I've been sitting around for nearly 6 weeks and now I find that's not the best thing I could have been doing - duh! Anything I can do that doesn't involve going out and falling flat on my face in public would be a help.

    Jim x

     
    Old 04-22-2004, 06:40 AM   #22
    Emsybobs
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    Re: Inner ear dizziness - in a league of its own.

    Hi jim, have had this 18mths and if id have found a cure, I would have told everyone!!! VRT is the only "cure" so thats what I'm doing. But I would advise you to try and get out and about, even if its for 2 10min walks a day. xxx

     
    Old 04-22-2004, 09:23 AM   #23
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    Re: Inner ear dizziness - in a league of its own.

    hi emsy, jim, all

    ems i got my doc to write the letter to linda luxon, its was sent last night, he has confused me now, he says he doesnt think that my vertigo and the rocking etc are connected that he thinks the vertigo is inner ear but not the other symtoms, this has scared me somewhat and cant wait for the appointment.....
    jim just like to add that i have a lot of symptoms like u, the fluttery heart i hate that , missing beats....then the racing if u dont ,mind me asking which part of the south east are u.......im in essex......

     
    Old 04-22-2004, 10:44 AM   #24
    Emsybobs
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    Re: Inner ear dizziness - in a league of its own.

    Damn brina, if id known, I was in s-east for 8 mths of this, would have met you. Left last June. Where they do rowing. Brill about your Gp letter but IGNORE your gp, what rubbish that its not connected. xxx

     
    Old 04-22-2004, 11:05 AM   #25
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    Re: Inner ear dizziness - in a league of its own.

    Quote:
    Originally Posted by brina
    hi emsy, jim, all

    ems i got my doc to write the letter to linda luxon, its was sent last night, he has confused me now, he says he doesnt think that my vertigo and the rocking etc are connected that he thinks the vertigo is inner ear but not the other symtoms, this has scared me somewhat and cant wait for the appointment.....
    jim just like to add that i have a lot of symptoms like u, the fluttery heart i hate that , missing beats....then the racing if u dont ,mind me asking which part of the south east are u.......im in essex......
    Hi Brina, I'm in Essex too - Maldon, to be precise.

    Sorry to read your diagnosis. Let's hope the doc has got it wrong, which is likely IME. I've had pretty poor experiences with docs, who don't seem to understand the condition. The best I've had is my current doc, who is willing to run some tests. Before it's been a case of "have some travel-sickness pills and it'll stop it". It's also nice to know that I'm not the only person here getting the fluttery heartbeat thing - not that I want anyone else to have it, but at least we can all suffer together

     
    Old 04-22-2004, 02:25 PM   #26
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    Re: Inner ear dizziness - in a league of its own.

    Thought I'd join in here........I may be in leafy Bucks now but I'm truly an Essex girl.........Romford and then Loughton........I have never worn white stilettos but I have been known to dance around my handbag I appreciate this will seem like total nonsense to most of you......but the Essex crew will know what I mean!!!

     
    Old 04-22-2004, 02:53 PM   #27
    Emsybobs
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    Re: Inner ear dizziness - in a league of its own.

    Even tho not from Essex I too have been known to do the ol' handbag dance but now, that's history thanks to a little known condition called an inner ear disorder....RAHHH! Sorry feel v limited by this disorder today and its effects!!! Think we should all go dancing/clubbing when cured and dance around our bags!!! xxx

     
    Old 04-22-2004, 05:07 PM   #28
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    Re: Inner ear dizziness - in a league of its own.

    Hear, hear!!!

    Sorry your not very well today Emsybobs.

     
    Old 04-22-2004, 05:09 PM   #29
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    Re: Inner ear dizziness - in a league of its own.

    Thank you MP...mood has plummeted also as it does when symptoms increase...Feel really fed up with all this! Hoping you're ok...xxx

     
    Old 04-22-2004, 10:57 PM   #30
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    Re: Inner ear dizziness - in a league of its own.

    Hi Emsy,

    How are you feeling today? Hope today is a better day for you than yesterday. don't know about the Essex handbag dance but my English husband still thinks I'm a foreigner from Wales!

    Madeleine

     
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