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Mal de debarquement syndrome

Posted , 6 users are following.

Jlem
Jlem

Last time I went to physio, my pt suggested I may have mal de debarquement syndrome. I googled it and fits exactly in my symptoms I am experiencing. Anyone else heard of this syndrome? Interesting read. Thoughts? Still waiting to see the neurologist again. Am presently trying to work half time. Some days are harder than others. Been having these symptoms since last August

1 like, 8 replies

8 Replies

  • jen60696
    jen60696 Jlem

    Posted

    I have heard of it. Have you been on a trip or boat? What are your symptoms?
    • Jlem
      Jlem jen60696

      Posted

      Last August was on a four day kayak trip. My symptoms started shortly when I came back. Developed vertigo, nausea and vomitting which required two hospitalizations. I still have rocking sensation, feeling unbalanced, head fogginess. Worse if not in motion, crowds, shopping, lying on my back
  • gillian76726
    gillian76726 Jlem

    Posted

    Yes i have and i would think quite a lot of people have.  Of you go to the Vestibular Disorders Association (veda), and do a search for Mal de Barquement you will fi d good onfo,on it.
  • julie.
    julie. Jlem

    Posted

    It is quite rare. I thought as a result of a cruise, and the brain not registering and adapting that you are no longer on the boat once back on land. Apparently you feel fine again when back on the boat.
    • gillian76726
      gillian76726 julie.

      Posted

      You dont need to have been on a boat to have it, although some people do if they have. It is more a description of the same feeling that your symptoms have on you.
    • julie.
      julie. gillian76726

      Posted

      Oh right I didn't realise. I think they say more likely as a result of a cruise though? I know my mum knows someone who has been diagnosed with it.....the lady was fine until she came off her first cruise. Now she is only symptom free when back on a boat 😶

    • gillian76726
      gillian76726 julie.

      Posted

      For people,who have been on a ship, yes it is more likely, but there are others who,havent and still get the same symptoms. Also some people,get it after a plane flight, go figure! 

      Basically it's all to do with 'mixed messages' to the brain that comes via our eyes, ears and Vestibular system.  Spme people for eg can read when travelling in a vehicle, others get nauseous (I do for sure, but I didnt used to). The vestibular system,,as explained to,me by a neuro otologist is very delicate and for some of us something like a virus can affect it. It can damage cells etc and once that happens we have to 'relearn' our balance. If the system isnt doing it's job as normal, the eyes will (As for me) have to do a lot more work.  I have a really good video i've kept of a sufferer talking to a group,of interns who explains it much better than me if you want it. 

    • julie.
      julie. gillian76726

      Posted

      Ah I'm one of the people who cannot read in a car, I've never been able to, within seconds I feel sick.

      I'm almost 10 weeks into my hell....but I'm seeing progress. Still waiting for ENT in April but I'm 99 percent sure I have Vestibular Neuritis, have all the symptoms to a tee. I'm going into town today with my kids for a Costa Coffee to see how I get on, I'm much better than weeks 1-7. Feeling positive! I think the fact I've carried on going into work and walking the school run has helped even though it's been awful 😀

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