disembarkment or mal de debarkment syndrome S.O.S.?

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a good sandwich
New Member


Date Joined Apr 2012
Total Posts : 4
   Posted 5/1/2012 8:25 PM (GMT -6)   
Does anyone know anything about this unusual syndrome. Someone in my family is
suffering from it. No doctor can figure it out. Many tests & scans have been done
and all are negative. Any suggestions for relief or cure? Thx.

disssy
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Date Joined May 2012
Total Posts : 2
   Posted 5/1/2012 9:59 PM (GMT -6)   
Yes I suffer from MdDs or  Mal De Embarqument Syndrome
 
You can visit the foundation site or yahoo support group MdDs, google MDDs foundation or go to Yahoo Support group.
 
There is no reliable cure other than time and rehab but there are reseachers from UCLA that have discovered it is a nerurological disorder.
It has to do with deep parts of the brain that are Hypermetabolic the Amygldala and another part this is brand new to all of us. I always knew it made people get ANXIETY i was not an anxious person when I got this disease.
 
It is a really terrible thing to have but a lot is casued by Anxiety and the terror of rocking and swaying.
 
If your relative recently took a Cruise or Flight or Train is the ususal onset.
 
It typically goes away in 6 weeks if you're lucky but has lasted as long as 2 -3 years for me I have had several episodes of it. I now get Headaches and Auras and Vertigo and heat intolerance and these are pretty common symptoms of it as well esp. when you have it for a long time.
 
Your relative must do Vestibular exercise ASAP its critical.Benzodiazapm drugs work well like Xanax Valium and Clorazapam
 
K
 

Post Edited (disssy) : 5/3/2012 3:12:48 PM (GMT-6)


a good sandwich
New Member


Date Joined Apr 2012
Total Posts : 4
   Posted 5/1/2012 10:26 PM (GMT -6)   
Thank you disssy. I wish you relief and hope as well. This relative has the rocking and swaying
and has tried much of what you have suggested. There was a flight involved. I am curious
if you tried migraine medicine therapy. There is something called vertigo migraine but I don't think
this is what my relative has. I am sorry that you have suffered with this syndrome and hope
that you are on the mend.

disssy
New Member


Date Joined May 2012
Total Posts : 2
   Posted 5/3/2012 3:38 PM (GMT -6)   
It's funny you mention MAV
There is a relation with Migranes to MdDs.
Lately the Migranes are really bad since i had a major surgery.
I linked a few things to Complex Migrane is what I have and yes MdDs is strongly linked to Migranes in almost all of us who have it.
They say Effexor is best SNRI to take there is a link I will post from another forum about MAV with Q&A from top researchers. Vertigo I get as well and it is all so similar but different when MdDs is set off by motion there is a difference all the experts agree.
It is bascially still more or less a mystery but Dr Cha UCLA is using TMS Magnetic treatment and this is solving a lot of the problems with all kinds of brain issues and curing?? MDDS. Alzheimers, Parkinsons .Depression you name it many doctors researchers are using it on these serious issues...There is a great show on NOVA PBS google that and TMS and you will find it.Its on main page look for magenitic therapy on left..It is being practiced all over but the doctors are not mainstream doing this for all disorders yet only depression is 100% FDA approved.Some insurance may cover depending. There are 360 of these machines already in USA and at most major Universitys. Its amazing non invasive no meds etc. And it is not like Electrical shock at all. Its very expensive and if you treat a condition like MDds is deep brain the doc would need to know what they are doing and have the proper coils....When Dr Cha finishes the research I am sure this will be the tool to cure it.

Post Edited (disssy) : 5/3/2012 2:53:40 PM (GMT-6)


Joy belle
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Date Joined Sep 2013
Total Posts : 3
   Posted 9/22/2013 4:08 AM (GMT -6)   
I also suffered from Disembarkment sickness after two trips from my home in Melbourne Australia to the USA and I suffered with this for 9 months. I had numerous tests done however no-one could shed any light including doctors and specialists. After seeing something on line about Vitamin supplement Q10 decided to give it a go.....GONE!!! After a day or two my symptoms were completely gone and the next time I travelled the same thing happened so that confirmed this wasn't a fluke..so anyone who has this, give it a try and I hope you have the same success I have had.
Good luck
Jo x

Joy belle
New Member


Date Joined Sep 2013
Total Posts : 3
   Posted 1/3/2014 7:20 PM (GMT -6)   
Further to my post re the benefits of using Q10 Enzyme to cure disembarkment sickness, the brand I have had success with is Swisse, each capsule contains 150mg ubidecarenone. I have tried other brands with the same dose which haven't worked and I have also used the Swisse Co-Enzyme Q10 with Ultrasome which hasn't worked. I hope this is helpful as this is a very unpleasant condition which I have after every trip I take.
Good luck
Jo

Serenergy
New Member


Date Joined Jan 2014
Total Posts : 1
   Posted 1/23/2014 4:01 PM (GMT -6)   
Hi jo, I have been diagnosed with mal debarquement syndrome. I have had this for almost 3 months now. I have been trying everything! I came across your comment about the Q10. I was wondering how many you were taking a day? Just the 1.? I have bought the tablets and have started them but just wanted to make sure I was taking enough. I'm ready to eat the whole bottle! Thanks heaps
Kylie

Joy belle
New Member


Date Joined Sep 2013
Total Posts : 3
   Posted 1/23/2014 6:00 PM (GMT -6)   
Hi Kylie,

I have just taken one tablet daily of 150mg and that worked in the past. However I have this condition back again after a long trip in November and Enzyme Q10 doesn't appear to be having the same effect this time. It is definitely worth a try though and I hope it works for you!
Jo

"Rare Case"
New Member


Date Joined May 2014
Total Posts : 1
   Posted 5/2/2014 2:40 PM (GMT -6)   
Hello MdDS peeps,

I am so sorry to hear how long you all have been suffering from this debilitating disorder. I was just "officially" diagnosed with this disorder as a result of a trip overseas March of this year. My life has completely done a 180 since March 15th. I no longer am able to CrossFit due to the high risk of injury (which is killing me), but I am allowed to walk or run at a moderate pace. I am absolutely exhausted and now struggle just to make it through the day. Normally, I am a very active person - always on the move. Manage to have a positive attitude after dealing with 2 other very rare diseases. But this one, put me over the edge. I was in tears when the balance specialists suggested that my symptoms and assessment results (normal of course) all lead to this disorder.

I have been put through the gamete of assessments/tests (balance, MRI, etc.) and had my appointment with my Neuro today. I have complex migraines (first one at age 29 - my clients thought I was having a stroke) and manage these with Relpax. However, ever since the onset of this disorder - my migraines have increased in both intensity and frequency. My neuro prescribed Topamax - 25mg to start and titrate 25mg each week until I am up to 100mg. How many of you suffer from migraines as well? She also suggested I take magnesium.

Have any of you had success with Topamax or magnesium? How do you keep a positive attitude in your personal life? Professionally - I just hide my pain, but unfortunately, my husband seems to get the brunt of my frustration.

Thoughts, tip and advice are always welcome with open arms!

Thank you!
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