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  • labyrinthitis versus Mal de Debarquement

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    Old 05-17-2003, 10:07 AM   #1
    Jules00
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    Post labyrinthitis versus Mal de Debarquement

    Hi all, what a great forum this is! Thanks for being here.

    I am in the intial stages of trying to obtain a diagnosis for what's going on with me, and I'm wondering if any of you out there have experienced the same or similar sensations as I am experiencing...

    My troubles started about a month and half ago with some troublesome ear/sinus congestion. I took some OTC decongestion meds, and they seemed to work okay in terms of clearing out the blocked feeling in my ears. Then, about a week ago, I woke up feeling slightly off-balance....actually, more like a constant "rocking" sensation. I experience this sensation 24/7, whether I am sitting or lying down, or standing up/walking. There is very little change in the feeling (i.e. I feel pretty much the same no matter what position my head or body is in), and unlike some of you here, I don't feel sick nor light-headed nor is my hearing affected in any way. I never feel like I'm spinning (i.e. I haven't gotten spinning vertigo)--it's just this rocking/slight up-and-down feeling. It feels *exactly* as though I am on a boat, actually. And oddly enough, the sensation greatly reduces whenever I ride or drive in a car.

    I went to the doctor a few days ago (after I realized it wasn't just a tempoary issue brought on by stress or whatever), and he speculated that it is probably labyrinthitis, although he sent me for the usual battery of tests to rule out more serious conditions (I won't get those back for about a week).

    Since the doc mentionoined labryinthitis, I have been searching for info on it online. Somehow, though, my symptoms don't seem to be typical or classic of Labryinthitis (gosh that's hard to spell! haha). Or maybe they are, I don't know...(?)

    What's kind of freaking me out is that my symptoms seem to match this rare disorder called "Mal De Debarquement" (or MDD) better than they do labryinthitis. From the little info I could find on MDD, sufferers seem to have this problem for YEARS and YEARS....(sometimes 15 or 20 years!), and there is no cure nor any real treatment for it. Needless to say, the idea that I might have MDD is rather worrying. The only thing is, MDD sufferers almost always first experience their symptoms after being on a boat cruise or an airplane. I haven't been on a boat or a plane in months...however, I was in the process of moving from the 15th floor of my apartment building to the 17th floor (via the elevator--with its up and down movement) just before this feeling started. That may sound silly, but I was going up and down and up and down on the elevator for literally hours, carrying my stuff from my old apartment to my new one.

    At any rate (sorry for rambling!), my question is this (besides asking if anyone else has experienced similar symtoms to mine): Is there a relatively sure-fire way to test for Labyrinthitis? As I said before, the doc I saw just seemed to be speculating, and I would like to have a firmer diagnosis so I can possibly stop worrying that I have the rarer/weirder (and seemingly much longer-lasting) MDD disorder.

    Thanks in advance for any replies.



    [This message has been edited by Jules00 (edited 05-17-2003).]

     
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    Old 05-17-2003, 10:27 AM   #2
    MSG41
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    Jules, if you find an answer to this question, please let us all know, because I am wondering the same thing. Also, if you find a doctor who says 'I just don't know' let us in on that too. Seriously, the problem is that you can't go into the inner ear to check things because it is so small and delicate. Inner ear problems frequently resolve themselves also, and of course no one wants to 'hear' that. People have done post mortems on menieres sufferers, with mixed results. My impression was its caused by a number of unrelated things. Good info on the ear I have found hard to come by. I never heard of that other thing.

     
    Old 05-17-2003, 10:37 AM   #3
    Emsybobs
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    I agree with MSG, I would love to hear of a test to be sure of L'itis but I doubt there is one.

    My symptoms are also v simlar to MDD (L'itis symptoms can be) but mine is much worse with head movements. I also didnt go on a plane or boat. Anythingto do with pressure, for example, a lift could cause ear problems as the inner ear is so delicate. More research needs to be done into inner ear stuff I think! I very much doubt you can get MDD without going on a ferry/plane. Let us know if you find out any answers. xxx

     
    Old 05-17-2003, 10:39 AM   #4
    Emsybobs
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    Also, I dont think MDD presents sinus problems too, as it is not like an infection. I am about to search the internet and check on this now! xxx

     
    Old 05-17-2003, 10:52 AM   #5
    Jules00
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    Quote:
    Originally posted by Emsybobs:
    I agree with MSG, I would love to hear of a test to be sure of L'itis but I doubt there is one.

    My symptoms are also v simlar to MDD (L'itis symptoms can be)
    Hi Emsybobs...so, Labryinthitis symptoms *can* be similar to MDD? That's interesting to know...I wonder what differentiates the two disorders, besides the suspected causes?

    MSG: If I find a doc who says "I don't know" I will surely pass his/her name along..(although I wouldn't hold your breath..haha).

    Even if there are no definitive tests for Labryinthitis, then what are the more common ones docs do? I want to be sure to ask the doc to do them the next time I go.

    Thanks so much for your replies.
    p.s. Emsybobs...my sinus troubles were pretty much gone by the time this rocking sensation started (just to help you with your internet search).


     
    Old 05-17-2003, 10:54 AM   #6
    scant5
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    As you read various posts of us describing our symptoms you will find that when it comes to an inner ear disorder there are varying degrees of each of our symptoms. My symptoms sound rather similar to you but I have not done any traveling in years. This is a great support group here because only the people actually going through something like this can understand what you are talking about. The only time I don't feel my symptoms are when lying down, sitting, or driving my car. My EnT test showed my labyrinth was fine yet a very well respected doctor I recently saw told me I could still have a mild case of labyrinthitis.

    take care
    Scant5

     
    Old 05-17-2003, 04:18 PM   #7
    Emsybobs
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    Hi again...yes L'itis can cause the ferry like feeling you are describing, what I mean is L'itis does not have to produce vertigo. Even if the sinus probs cleared up before, they could still have made you dizzy. Typically, viral L'itis occurs up to 3 weeks after a heavy cold. On the internet, it said MDD only occurred after travelling on a ferry/plane and would occur immediately. Hope this helps.

     
    Old 05-18-2003, 05:54 AM   #8
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    hi jules
    your symptoms sound very similar to me... mine has been gradually coming on for about 6 wks. i have searched the web for info on these symptoms and i do see your connection with mdds. i thought the same thing . but i have not traveled on a boat. the only thing i did was to go through the euro tunnel. but the symptoms didnt happen straight away. i mean not this 24/7 moving , rocking , swaying . i havent had a cold previously . although one of my daughters had flu..
    no on else caught it in the family.
    for the first few weeks all i did was to pace about, trying to ignore this feeling hoping it would go away.
    i have not had any tests done. but in about 4 weeks i will see the neurologist and have some then.
    the trouble is , its very hard for the rest of the family to understand. as with many people they would'nt have a clue to any such thing as mdds. well i didnt until a few weeks ago.
    do u get the other sypmtoms as well, as in feeling worse the more enclosed u r. even typing at the computer is different. my eyes feel as though they r pulling,the closer i look at things.
    i found also being in the car made it easier. i think the movement balances out , the movement in our ears,
    i feel that the otoneourologists should be researching into inner ear probs. more than they r. but as with tinnitus, they say not life threatning , not urgent.
    but this sure ruins quality of life, or is it a frame of mind..?
    brina

     
    Old 05-19-2003, 09:47 AM   #9
    brina
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    hi jules
    r u still getting the constant rocking sensation
    i am and finding it very distracting. what do u do to
    distract from it????????
    brina

     
    Old 05-21-2003, 11:33 AM   #10
    Jules00
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    Hey Emsybobs..it does seem (from my own internet checking) that MDDs occurs almost immediately after getting off a boat/plane. I'm still wondering about my elevator riding, although I admit that it would be *very* odd if that were the cause. Thanks for looking up the info for me! :-)

    I didn't have a cold before this started...my ears and nose were just congested (like, I didn't feel sick or under the weather the way you do with a cold or flu..I just felt "blocked up"). But now that I think about it, the congestion did happen 2-2 1/2 weeks before the dizziness/rocking sensation started, so yeah I definitely think there's a connection there.

    Briana: Yeah, it's been two weeks now and I'm still experiencing the rocking sensation. It seems to get a bit better or worse, depending on the day. I'm trying to go about my normal routine, but it's hard...I'm pretty mentally/physically exhausted from all this. Maybe you should give your doc a visit and go do all the tests, just to rule out more serious conditions?

    Thanks all :-)

     
    Old 05-21-2003, 11:34 AM   #11
    Jules00
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    Opps...wonder if this is working..just tried to post a reply and it didn't work..

     
    Old 05-27-2003, 07:59 AM   #12
    nicksan
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    I've had similar symptoms...maybe not like I'm on a boat...more like a floating, disconnected, lightheaded feeling with cold sweats...it feels like when I do when I have motion sickness.

    The doctors are clueless.
    My Vestibular Therapist told me about MDD. I have SOME symptoms but not "classic" symptoms. 1 ENT classifies me as a Vertigo Patient. My current ENT diagnosed me with LAB...I never had any "spinning" sensations and I'm not sure if I am a "classis" Lab case either.

    I know my symptoms get worse when the tempurature rises..and my symptoms almost always appear when I am in malls and other busy places.

    A couple of things that happened last year was that my father passed away which was a source of much stress. Another intesting thing is I switched jobs. I used to work for a company that was located on the 12th floor. That was my first job out of college. I've been there for 7 years. Last year, 2 months before my first symptoms, I started working for a company that is on the 43rd floor. Needless to say that the elevator ride to the 43rd floor is quite a different experience than to the 12th floor. I don't know if this has anything to do with this, but I just wanted to see what was radically different last year from any other year...

     
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