Mal de barquement

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Has anyone been diagnosed with this...was it diagnosed by ent or neurologist. I am starting to thonk this may be what I am suffering as the symtoms match.

I would be interested to hear from others who have this diagnosis and what their experiences are.

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  • Posted

    Mal de debarquement
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  • Posted

    2 years ago I was on a long rough ferry for 48 hours very sea sick afterwards I felt like I was swaying rocking and bobbing around. It lasted 5 months. I have started with these symtoms again but more severe and it began end if Jan this year. I feel ok in the car when someone drives me.. I feel normal..the onlywent time I felt normal was when I went for a swim.

    I sometimes feel and I actually am swaying very slightly but only I would notice it.

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  • Posted

    Hi

    I was diagnosed with MAV and slight mal de barquement (MDDS) by my ENT who is a specialist in dizziness.   My symptoms vary, I have rocking/swaying which was the worse when it all started a year ago, it has subsided some but I have some sort of dizziness daily, I also have a leaning to the left sensation, falling forward or back sensations, feel like I'm being pushed forward by something when I walk at times, nausea, anxiety and panic, depression and anger caused by being fed up with this disorder, when I sit on the floor I feel like I'm falling, sinking feeling when I sit down, all the different types of dizziness I have happen when I'm sitting, standing, laying down, make no difference, I have headaches I believe are more tension and the occational migraine, with headaches I have neck and upper shoulder pain.  I have dizziness 90% of the time, most days in some form wether it be bad or be in the background.  Thankfully I'm getting a day or two a week where I have nothing.  

    I'm doing VRT exercises daily and have beenf or 3 months now.  I don't take any meds because I've tried and the side effects are awful for me.  Apparently people with this disorder are sensitive to meds.  Also dizzy disorders tend to cause anxiety that comes our of nowhere.  

    This is a good place to talk with others who are in the same place, and the people here are so supportive.  

    Have you been dx'd with MDDS only?  How long have you had it?  Was it causes by anything like a cruise?  Mine all came out of nowhere, one day I was fine and then the same night I was dizzy.  I had BPPV 6 years ago but now its turned into this.  

    I'm sorry you have this, its not a pleasant disorder and is very frustrating.  I hope you find relief very soon.

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    • Posted

      Hi Patty the first occasion I had this it last 4 months I felt I was swaying and felt unsteady. It came after a long ferry crossing. This time it came from no where..No ferry etc..But I think it is mal de debarquement as all my symptoms seem to fit. I do feel better when I'm in a car being driven. Last time I went to ent he gave me an mri scan..And then I was told to do exercises. This time ive been to a different ent consultant and he just said take betahistine and come back in another 6 months. He says he doesn't know what is the origin. So my doctor is sending me to a neurologist. When I read all the symtoms I can relate to them so well.

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    • Posted

      Did the ENT do any testing besides the MRI?  I think the meds he gave you treat Meniere's.  I believe its hard to really know what it is, since from what i've read over the past year, the symptoms of MAV, MDDS, lab and neuritis are very similar.  But it seems the go to pills are anti depressants, blood pressure meds and migraine pain relief meds, some doc's use benzo's, valium, kolonipin.  I have xanax i take on the bad days. 

      Did they send you to VRT for the exercises or just tell you to do them.  I know when I was sent, the therapist sent a program that best fits the dizziness i am having.  The exercises I do are different from what someone with labs or vestibular neuritic are.  

      It sounds like you need to have the testing done by a otological/neurotological ENT, this way they can try to figure out exactly what is going on.  

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    • Posted

      I had calorific testing or whatever it's called (hot and cold air in each ear) and I had a test where I had to follow a red light smoothly side to side and up and down ...they both came back normal.

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    • Posted

      Anytime you want to chat, just send a message.  I'm happy to chat, I believe it helps both of us, we can vent and try to understand.  We are never alone when we have others who can help and talk.  I know I get so mixed up in my own stuff, that talking to others is helpful.  so anytime you need to chat just yell.

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    • Posted

      Arrr thank you!! by the way I was just given exercises to do and told how to do it. Which basically was looking and my thumb held out infront of me and looking side to side. The other exercise was focusing on things from side to side as you walk. X
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    • Posted

      Hopefully those will help. When I started mine I was dizzier, but it got better. If you find you get dizzy doing them ir after, then do them slower. But I hope you feel better very soon
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  • Posted

    I am exactly the same as Patty, under neuro now and awaiting diagnosis x
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