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Has anyone experienced Mal de Dembarquement? (MDD)

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Lyme Disease
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Raincity
Regular Member
Joined : Dec 2015
Posts : 87
Posted 12/27/2015 7:30 PM (GMT -8)
My most bizarre symptom by far has been something called Mal de Dembarquement, or MDD. In French, MDD literally means "badness after getting off a ship." My LLMD says this is "very lyme" but I've never spoken to anyone who has experienced it. I'm wondering if someone here has? While I wouldn't wish it on anyone, it would be a great relief to hear that I'm not alone.

Here's what it was like. I began to wake up in the morning feeling extremely heavy. As if my whole body was being tugged down towards the bed. This happened for about a week. I had been taking muscle relaxants before bed for spinal pain, and I figured it was just the effect of the pills I was feeling in the morning.

Then the feeling intensified. When I walked, my legs felt about 1,000 pounds. It was not vertigo or dizziness, but it was a very strange and extremely strong sensation of my body being sucked downward. As if magnets were on bottom of my feet and attaching to the floor. I could also describe it as that first moment in an elevator, when you're going up, and you feel that moment of super-gravity, of extreme heaviness. Walking took serious effort.

It wasn't just when I was walking. I could feel the sensation whenever I sat down or laid down. The only time I felt normal was when I was in a moving car. (sounds bizarre, but that's a hallmark of MDD.) After about a week of this, the sensation transformed. Suddenly, I felt incredibly light and bouncy. I felt like, when I walked, I might float out of my body with every step. others with MDD have described this as 'walking on a trampoline.' I could lie and bed and feel as if I were on a roller coaster. Sometimes I'd look over at my husband and say, "wheeee!!!"

It's called MDD because it's a similar sensation to getting off of a ship before you have your land legs. You brain thinks you're on a moving vessel of some sort. It hits some people, mostly older women, when they get off a cruise, and it can last for a long time. It can also just hit, randomly and spontaneously, no ship involved. After about 2 weeks, that symptom morphed into something else, the lyme found a different way to torture me, and I haven't experienced it since. By far, it's been the strangest thing ever. Has anyone else experienced this? Thanks! rolleyes
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Tillybear
Regular Member
Joined : Dec 2015
Posts : 383
Posted 12/27/2015 7:48 PM (GMT -8)
Good heavens no thank goodness. What an awful sensation that must have been. I hope it never comes back, too.
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PeteZa
Veteran Member
Joined : Jul 2015
Posts : 9729
Posted 12/27/2015 7:52 PM (GMT -8)
I was an avid deep sea fisherwoman and I know exactly what you mean about sea legs and land legs. I would get off the ship and I walked funny for a day until I got my land legs. It was because the entire time on the ship I was always searching for my balance due to the waves.

That would be horrible to have all the time.
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Lymie Girl
Veteran Member
Joined : Jan 2015
Posts : 1332
Posted 12/28/2015 8:23 PM (GMT -8)
I get this. I had this more towards the beginning of my treatment. It would feel like the ground was moving underneath my feet.

I still get the heaviness and weakness in my limbs. I have also felt like there was an anchor tied to my neck.

It sounds like you have had a rough time with this. I agree it is weird!
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bluelyme
Veteran Member
Joined : Nov 2015
Posts : 6147
Posted 12/28/2015 8:31 PM (GMT -8)
Yes some thing similar where felt like floor was moving underneath me was not the vertigo which is scary but i believe it is vestibular or nerves there...i always feel heavy though
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Razzle
Veteran Member
Joined : Aug 2007
Posts : 4415
Posted 12/29/2015 1:08 AM (GMT -8)
YES!!! Thank you for identifying what has been going on for me for the last year and a half!!! I have been dealing with a constant bobbing & swaying sensation that only goes away when I'm in a moving vehicle ever since a dose of IV Doxycycline in 2013, and the doctors here have not given me any answers or help. I was told I had BPPV (benign paroxysmal positional vertigo), which I know it is not (symptoms do not fit).

I found this article on PubMed about a potential therapy for the condition:

www.ncbi.nlm.nih.gov/pmc/articles/PMC4097942/

Again, thank you so much for your post!
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JessicaMommy
Veteran Member
Joined : May 2015
Posts : 507
Posted 12/29/2015 4:36 AM (GMT -8)
Yes, this is my main symptoms of Lyme Disease. I've had this symptom for 5 1/2 years now. Many doctor tests etc was told I felt like this because I'm a busy mom and it's "anxiety", for 5 years by doctors. Finally positive Lyme test this past May. It's an awful symptom. And it fluctuates in severity from day to day. I describe mine as off balance, bobbing, swaying, walking on a trampoline; foam mat; walking on a dock; standing in a boat on the water. Sometimes its hard to stand in shower. Sometimes I have to baby step around the house or store. :(
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MarieLS
Veteran Member
Joined : Dec 2012
Posts : 2690
Posted 12/29/2015 5:14 AM (GMT -8)
I get these symptoms on and off. Luckely for me not all through the day, all the time. I'm sorry you're experiencing this. It must have an enormous influence on your daily life...
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Traveler
Elite Member
Joined : May 2007
Posts : 36542
Posted 12/29/2015 6:06 AM (GMT -8)
Hi Raincity! I'm so sorry I haven't had the opportunity to welcome you before this. So, welcome to our community! :-) You story resonated with me as well, although I'm now healed and they just can't get rid of me! turn

I too had that "walking on a ship" feeling, although I had no idea it had a name! Weird trying to explain to others why I was bouncing off the walls as I walked! But car rides were never any relief for me, as the super nausea would always set in.

I think you will find that a handful of people here will share most all of your symptoms - at least that's how it is for most who come here!
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