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Junior Member
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Join Date: Feb 2007
Posts: 16
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Junior Member
Join Date: Feb 2007
Posts: 16
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Here is one good explanation:
"Mal de Debarquement Syndrome (or MdDS) is an imbalance or rocking/swaying sensation often both "felt" and "seen" by the sufferer that occurs after exposure to motion (most commonly after a sea cruise or a flight). Although other forms of travel have been known to trigger it.
After alighting or "debarking" (debarquement) the traveller continues to feel "all at sea", unable to get their land legs back. Although most travellers can identify with this feeling and do actually experience it temporarily after disembarking, unfortunately in the case of MdDS sufferers it can persist for many weeks, months, even years afterwards.
The symptoms are with you constantly, they never leave, nor can they be alleviated by any anti-motion sickness drugs (eg Stemetil, Serc etc)
"Like trying to constantly walk on a mattress or trampoline"
is a good description of the main symptom, which is usually most pronounced when the patient is sitting still; in fact, the sensations are usually minimized by actual motion, for example driving."
http://www.mdds.org.uk/
More explanation of the symptoms: http://www.mdds.org.uk/symptoms.phtml
For me, I got off a short ocean cruise and still felt like I was on a rocking boat. My husband, who used to be in the navy, said I needed to get my "land legs" back. But the rocking continued. The only time it didn't bother me was in the car. Being under fluorescent lights made things worse -- I hesitated to go grocery shopping because I felt I was lurching around like I was drunk.
There is no test for this. It is diagnosed by the symptoms and by process of elimination. I read lots of folks who went through full sets of neurological and psychiatric testing before finally finding out what was wrong.
People's experiences vary. Sometimes the symptoms go away in a few days. Sometimes it takes weeks or months or the symptoms don't ever go away. Someone who's had the symptoms may be more prone to having them in the future. I've had some symptoms again following particularly long and/or bumpy plane rides.
But I try to pack gingko, which is what helped me. In the two months or so when I had symptoms the first time, I tried a lot of things that I thought would work or might work and nothing did (my doctor's prescription, chiropractic adjustment, balance exercises I found on the internet, ginger, a low dosage of gingko). Then I upped the dosage of gingko and the rocking went away within a day. A couple times I realized I'd forgotten to take it when I felt myself rocking again. I think I had to take it for about a month or so until I could stop the pills and not feel the rocking.
I tried the ginkgo because I read on the web site of some medical school's balance clinic (sorry, I don't have all my materials anymore) that ginkgo may help with balance disorders. Since it operates to improve capillary blood flow, this may be the mechanism. Anyway, I did what research I could about dosage, side effects, who shouldn't take the stuff, etc., before trying it. (I always put this in because folks with bleeding disorders, taking blood thinners, etc. shouldn't take ginkgo. I don't want anyone to be hurt because of something I say.)
I do have a little tinnitus, too. I may be B12 deficient -- with malabsorption, my age, and a vegan diet, this is possible. I've started taking a supplement for this. (The MdDS and tinnitus predated my vegan diet by years.)
My doctor tested my thyroid function and said it was fine. He even said he called up a specialist to see what other tests he might do and said he drew a blank. I can't say the cold hands and feet are a big problem. I don't have pain, numbness, color change, or the like, and the coldness comes and goes. I've talked to others with the same problem and no one ever seems to get an answer. Anyway, now my cold spells provide an interesting counterpoint to my menopausal hot flashes 
Who knows, maybe with avoiding the five substances Enterolab says I should avoid some of these niggling symptoms will go away. I don't want to sound like a complainer. Heck, since I stopped the gluten I am feeling so GOOD.
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