What are the chances of mdds?

I’m just curious because my mom has been researching herself and she is convinced that I have this mal de disembarkment syndrome and must have got it spontaneously. This is because of my “on the boat” sensations that are 24/7 and because I feel better when in motion such as walking and driving. Has anyone been diagnosed with this syndrome or thought they had it?? Thanks!

What you describe is very common on this board. I believe that MAV can commonly cause symptoms akin to MDDS.

My understanding is that it is possible to have MdDS spontaneously (i.e. without some sort of travel experience) but that it usually does come on after a trip on a boat, plane, train, etc.

Differentiating the two conditions can be difficult, especially if they are co-morbid. I was interested to see in my notes from my neurologist that he’s listed ‘possible MdDS’ as well as migraine. He’s never discussed this with me! I am fairly certain that I have in fact had at least one episode of ‘true’ MdDS’ several years ago. I had been on a boat trip (and got sea sick) and for a couple of weeks afterwards continued to feel exactly as you do the first few minutes after a boat trip - ‘sea legs’. I had NO other symptoms. GP at the time scratched his head and said ‘virus’.

My neurologist’s notes also say ‘no’ in the box for ‘motion sickness’ which is NOT the case (and they never asked me about it). I am motion intolerant - I’m OK up and down but not side to side or rotational so cannot do amusement park rides - not even the spinning tea cups at Disney land.

MdDS has come up before on the forum. If you do a search you’ll probably find some more info but here’s a good thread from a few years ago: viewtopic.php?f=1&t=715&p=6206&hilit=mal+de+debarqument#p6206

I know the Vestibular Research Lab at Sydney University are doing some work on MdDS - you might find something there too: psych.usyd.edu.au/vestibular/