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Ask someone with MDDS
February 7, 2018 at 5:22 pm
Quote:Mal de debarquement (MDD) is a rare and poorly understood disorder of the vestibular system that results in a phantom perception of self- motion typically described as rocking, bobbing or swaying. The symptoms tend to be exacerbated when a patient is not moving, for example, when sleeping or standing still. Studies have shown that a brief period of these symptoms is common in healthy individuals after prolonged episodes of passive motion, normally lasting seconds to 3 days. However, in MDD, significant balance impairment can persist for months to years.
Yep, it's weird. Ask away.
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RE: Ask someone with MDDS
February 7, 2018 at 5:28 pm
(February 7, 2018 at 5:22 pm)Cthulhu Dreaming Wrote: Quote:Mal de debarquement (MDD) is a rare and poorly understood disorder of the vestibular system that results in a phantom perception of self- motion typically described as rocking, bobbing or swaying. The symptoms tend to be exacerbated when a patient is not moving, for example, when sleeping or standing still. Studies have shown that a brief period of these symptoms is common in healthy individuals after prolonged episodes of passive motion, normally lasting seconds to 3 days. However, in MDD, significant balance impairment can persist for months to years.
Yep, it's weird. Ask away.
What's the longest episode you've had thus far?
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RE: Ask someone with MDDS
February 7, 2018 at 5:33 pm
15 months.
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RE: Ask someone with MDDS
February 7, 2018 at 6:05 pm
So if I understood this correctly, if it's a phantom sensation... does this mean you feel like you're rocking and bobbing and swaying etc, even when you're not? I'm trying to understand the phantom aspect of it. I am only familar with the whole phantom limb thing.
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RE: Ask someone with MDDS
February 7, 2018 at 6:40 pm
Does other motion exasperate your condition? Like car rides or riding on a ship at sea?
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RE: Ask someone with MDDS
February 7, 2018 at 6:44 pm
(February 7, 2018 at 6:05 pm)Hammy Wrote: So if I understood this correctly, if it's a phantom sensation... does this mean you feel like you're rocking and bobbing and swaying etc, even when you're not? I'm trying to understand the phantom aspect of it. I am only familar with the whole phantom limb thing.
Yes. I experience the sensation of motion when completely at rest. For example, I am sitting up straight at my desk right now and I feel as if I am on a boat, which often includes symptoms of seasickness.
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RE: Ask someone with MDDS
February 7, 2018 at 6:50 pm
(February 7, 2018 at 6:40 pm)Antares Wrote: Does other motion exasperate your condition? Like car rides or riding on a ship at sea?
Riding in a car is OK (in fact that's one of the diagnostic criteria).
Flying is hit and miss. I haven't flown enough since onset to be sure, but it seems to be related to where I am seated on the plane and how much turbulence, etc there is.
Being on a boat or a ship has almost always triggered an episode or an increase in symptoms. I only do so when necessary. If I stay on deck, stay moving, and keep my eyes on the horizon, the discomfort is less. Being seated in the cabin brings on nausea immediately, even in calm seas.
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RE: Ask someone with MDDS
February 7, 2018 at 6:52 pm
(February 7, 2018 at 6:44 pm)Cthulhu Dreaming Wrote: (February 7, 2018 at 6:05 pm)Hammy Wrote: So if I understood this correctly, if it's a phantom sensation... does this mean you feel like you're rocking and bobbing and swaying etc, even when you're not? I'm trying to understand the phantom aspect of it. I am only familar with the whole phantom limb thing.
Yes. I experience the sensation of motion when completely at rest. For example, I am sitting up straight at my desk right now and I feel as if I am on a boat, which often includes symptoms of seasickness.
That sounds like a nightmare 
Nausea is sometimes even worse than pain, to me. Depending on how extreme the pain or nausea, of course.
I mean, even when my toothache is really really bad for example...I think I'd still rather that pain that feel like I was going to puke. That's awful.
Are there any medications to treat it?
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RE: Ask someone with MDDS
February 7, 2018 at 7:01 pm
Does motion sickness medicine help?
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RE: Ask someone with MDDS
February 7, 2018 at 7:09 pm
(February 7, 2018 at 6:52 pm)Hammy Wrote: Are there any medications to treat it?
There are no effective, non-experimental treatments at all. The experimental treatments are not covered by insurance, are ineffective in a lot of people, and as far as I can determine, are only done on the east coast. The condition is *very* poorly understood and research is underfunded.
There are medications to treat symptoms (nausea, etc) but I am finding them not very effective. The apparent motion occurs during sleep (though I am of course not awake to experience it) - upon awakening nearly every day, the nausea is overwhelming as I have done nothing for 7-8 hours to manage the symptoms.
I have tried taking an anti-emetic at night but it does not work for me. Motion sickness medications like Meclizine and ordinary dramamine don't work for this at all and the latter for me has side effects that make it unsuitable in any case.
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