Author Topic: Mal de Debarquement  (Read 5384 times)

Sue

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Mal de Debarquement
« on: March 17, 2009, 06:03:18 pm »
So, I have this now after my 7 day cruise.  I had it after a previous 3 day cruise, so thought I might have it again.  I am bobbing up and down in my head.  So I go and find out more about this and now I'm freaked out that this may stay with me longer than my previous episode, which was about, oh  3 weeks or so.  If this lasts months and months I am NOT going to be very happy.  Nor will I go on a stupid boat/ship ever again! Crikey!   I am thinking that I was more likely to get this because of the AN, but then maybe not?  Anybody else have this.  Supposedly this is "rare".  Well, I for one am sick and tired of being the 'RARE' bird around the house.  Okay, I vented. 

Sue, bobbing up and down in Vancouver USA


Mal de Debarquement

Mal de debarquement literally means "sickness of disembarkment." This term originally referred to the illusion of movement felt as an aftereffect of travel by ship or boat. Some experts now include other types of travel (such as by train and airplane) and situations with new and different movement patterns (such as reclining on a waterbed).

For a handful of people, this illusion of movement seems to last for long periods of time: weeks to months, even years after a voyage. Some physicians refer to it as mal de debarquement syndrome, reflecting that it is a collection of symptoms rather than a specific disease. There is no universal agreement among physicians about what mal de debarquement is or how to diagnose it. Not all doctors even agree that persistent mal de debarquement exists.

Leading explanations for the syndrome conclude that the problem is not in the inner ear and most likely occurs someplace in the balance areas of the brain. The brain adapts to the motion of the ship or other vehicle; but once the movement stops, the brain is unable to readapt once again. Why this ability to adapt would suddenly stop is not understood. One theory is that mal de debarquement is a migraine variant; long-lasting mal de debarquement is experienced by middle-aged woman more than by other groups, and more women than men experience migraines.

Symptoms of mal de debarquement include the sensation of bobbing, rocking, swaying, swinging, floating and/or tumbling. These may be accompanied by unsteadiness, disequilibrium, anxiety, difficulty concentrating, and a loss of self-confidence. The symptoms usually increase in enclosed spaces and when trying to be motionless such as when attempting to fall asleep in bed or when stopped at a traffic light. The symptoms improve during constant, steady movement such as experienced while in a moving car. Mal de debarquement does not include spinning vertigo, vomiting, cold sweat, ear pressure, ear pain, sound sensitivity, tinnitus, hearing loss or distortion, double vision, or bouncing vision.

Persistent mal de debarquement usually begins within hours of stopping the novel movement and resolves within about six to twelve months. There are also reports of it not resolving for years.
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
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The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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4cm in Pacific Northwest

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Re: Mal de Debarquement
« Reply #1 on: March 18, 2009, 08:55:16 am »
I get this after long trips. Eventually it subsides. I never knew what it was. Interesting information.

Thanks for sharing.

DHM :)
« Last Edit: March 18, 2009, 02:20:35 pm by 4cm in Pacific Northwest »
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

GRACE1

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Re: Mal de Debarquement
« Reply #2 on: March 18, 2009, 09:01:16 am »
Let's hope and pray that this will resolve very shortly.

Grace
Diagnosed 7/06: AN - right side: 1.3cm in transverse dimension, 6mm in AP dimension, and 6mm in cephalocaudal dimension.
GK 12/06- Wake Forest Univ Baptist Med Ctr
MRI 5/07- Some necrosis;  Now SSD
MRI 12/08- AN size has reduced 50%
MRI 12/11- AN stable (unchanged from 12/08)
Next MRI: 12/16

Kaybo

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Re: Mal de Debarquement
« Reply #3 on: March 18, 2009, 11:32:21 am »
Sue~
So sorry that this is happening to you.  Just a thought (& I doubt it will work) but have you tried the "bands" that you worn while you were on the boat?  Wonder if that will help any with this? ???

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Sue

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Re: Mal de Debarquement
« Reply #4 on: March 18, 2009, 12:44:20 pm »
I thought about those bands, too, K, and tried them, but didn't really see any difference.  After some more Internet snooping, I realize that what I have isn't as bad as some, and I am pretty confident it will slowly subside and go away.  When I read "disease" and "rare" and "months and years" I had a mini-freak out.  :o :o

I trust it will just go away, eventually. 

Sue in Vancouver
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

Syl

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Re: Mal de Debarquement
« Reply #5 on: March 19, 2009, 11:08:39 am »
Sue:

I had wondered about this--how ANs affects such activities as flying or going on a cruise. Now I know. Looks like your 3-day cruise gave you one week of this Mal per day of cruising. I hope it doesn't last 7 weeks. I wonder if doing some vestibular exercises might help you defeat this Mal sooner?

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

Sue

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Re: Mal de Debarquement
« Reply #6 on: March 19, 2009, 11:37:27 am »
Interesting ratio idea.  I guess I'll find out!  I feel like a Bobble Head doll!  Just a bit, not a lot. Just enough to be distracting sometimes.

Sue in Vancouver
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode