Mal de Debarquement Syndrome

[BApal]

Any other sufferers out there?  
We got off a lovely 32 night cruise and I have been rocking with horrible balance for almost 10 months now. I never had anything like this before.
It’s a rare central  vestibular disorder that typically arises following exposure to passive motion (i.e. boat, airplane, automobile, train, etc.). ‘Mal de Debarquement’ is French for ‘sickness of dis-embarkment’  Some people also have accompanying migraines and a few also have vertigo but not always.

It is NOT seasickness and it is not helped by seasickness medications. Bonine and patches are not recommended. 
 It’s not well studied. No cures.
It’s not a psychological issue. Stress or anxiety is not the cause but having these symptoms is stressful. Most doctors don’t know much about it and have no clue about what to do about it. ENTs usually order tests to rule out inner ear problems , brain tumors , etc. There is some physical therapy that’s prescribed that includes balance exercises and eye exercises. 
It’s not fatal. 
Sometimes it never goes away. 
It’s miserable. 

Anyone one else experience this chronically?  

[kluv2cruz]

I have had this but didn’t last very long. Have you reached out to a naturopath? Good luck. Not fun.

[wwcruisers]

Aa-ah -- the dreaded 'Dock Rock'!😱 While, for the most part, I do not suffer from traditional seasickness -- I have had that 'motion of the ocean' sensation on dry land, for days (or weeks) after a cruise. But I have never heard of anyone suffering from it for months. Hope that the OP finds someone who can help.

[clo]

It sounds like you've educated yourself on this problem. Have you looked at the Cleveland Clinic (highly rated) link. It mentions a couple of specialists. Here it is and I wish you the best of luck.

 

https://my.clevelandclinic.org/health/diseases/24796-mal-de-debarquement-syndrome-mdds

[CGinMTL]

Poor op. This sounds horrible.

Hope you find a way to relieve the symptoms

Can acupuncture help ?

[donaldsc]

I sometimes get it but it has always gone away in a few days.  What I have never been able to figure out is why I get it when I get off the ship at the end of the cruise but never when I am off for just a day at a port stop.

 

I will also make a suggestion. Talk to the people at Mayo Clinic.  I had a medical problem (not mal de barq) that over the course of more than a year none of my local medical people could figure out how to stop it.  I went to Mayo and they did a whole bunch of tests in my 4 day visit there and they found what was wrong and my problem has never returned.  

 

Maybe they can handle your problem.

 

DON

Edited September 11 by donaldsc

[clo]

9 minutes ago, donaldsc said:

I sometimes get it but it has always gone away in a few days.  What I have never been able to figure out is why I get it when I get off the ship at the end of the cruise but never when I am off for just a day at a port stop.

 

I will also make a suggestion. Talk to the people at Mayo Clinic.  I had a medical problem (not mal de barq) that over the course of more than a year none of my local medical people could figure out how to stop it.  I went to Mayo and they did a whole bunch of tests in my 4 day visit there and they found what was wrong and my problem has never returned.  

 

Maybe they can handle your problem.

 

DON

A great suggestion!

[BApal]

4 hours ago, kluv2cruz said:

I have had this but didn’t last very long. Have you reached out to a naturopath? Good luck. Not fun.

Still in the diagnostic phase. That is an avenue I will do, however I already doing some of those things along with pretty clean nutrition. 
Thank you ❣️

[BApal]

4 hours ago, wwcruisers said:

Aa-ah -- the dreaded 'Dock Rock'!😱 While, for the most part, I do not suffer from traditional seasickness -- I have had that 'motion of the ocean' sensation on dry land, for days (or weeks) after a cruise. But I have never heard of anyone suffering from it for months. Hope that the OP finds someone who can help.

Unfortunately that can be the case. I’m I hopeful I will beat this. I have times when I don’t have symptoms which is a good sign. 
Thank you ❣️

[BApal]

2 hours ago, clo said:

It sounds like you've educated yourself on this problem. Have you looked at the Cleveland Clinic (highly rated) link. It mentions a couple of specialists. Here it is and I wish you the best of luck.

 

https://my.clevelandclinic.org/health/diseases/24796-mal-de-debarquement-syndrome-mdds

I am going to Mayo Clinic. Cleveland Clinic and  Mount Sinai are ones on my list with treatment programs for this, also. I’m hoping Mayo can help. 
Thank you, great info ❣️

[BApal]

57 minutes ago, donaldsc said:

I sometimes get it but it has always gone away in a few days.  What I have never been able to figure out is why I get it when I get off the ship at the end of the cruise but never when I am off for just a day at a port stop.

 

I will also make a suggestion. Talk to the people at Mayo Clinic.  I had a medical problem (not mal de barq) that over the course of more than a year none of my local medical people could figure out how to stop it.  I went to Mayo and they did a whole bunch of tests in my 4 day visit there and they found what was wrong and my problem has never returned.  

 

Maybe they can handle your problem.

 

DON

Mayo Clinic is where I am going. They also helped me immensely for something else, too. I was highly impressed with their specialists. 
I didn’t have it on any excursion either. It started when we got home. Maybe I just need to go on a ship and stay, lol. We had an aft cabin and I wonder if that had something to with it. There was vibration back there and I wouldn’t recommend that location for anyone prone to seasickness which I didn’t have. 
thank you ❣️

[clo]

50 minutes ago, BApal said:

I am going to Mayo Clinic. Cleveland Clinic and  Mount Sinai are ones on my list with treatment programs for this, also. I’m hoping Mayo can help. 
Thank you, great info ❣️

Omigosh, a patient with a brain 🙂 Keep us posted. 

[dickinson]

@BApal I am a fellow sufferer.  I have had it since a cruise in November 2017.  On a scale of 1-10 I am mostly a 1 or 2.  There is a F group if you have not yet joined.  Some people have had it since they were kids.  I feel for them.  I did go to a neuro-otologist who did testing and told me I had it.  He didn't find anything wrong.  There is no cure for this but some people find relief with medication.  Many people say not to cruise again but there are some who do.  I have cruised four times since.  I never fly home the day of disembarkment but the one time I did my rocking was a little higher for almost 6 weeks.  When going on a long car drive I stop every two hours and walk around.  After a good night sleep I am back to my level 1-2.  

 

If you haven't found the national site for the MdDS Foundation, here is a link: https://mddsfoundation.org

 

Good luck.  It can still go away.

[Shmoo here]

10 hours ago, BApal said:

Anyone one else experience this chronically?  

I get it, but pretty mildly.  Worst one was after one cruise it lasted about a month, but usually only about a week.  

[dickinson]

FYI - If it lasts no more than a month it is Mal de Debarquement.  If more than a month then it is a syndrome.  it also affects many more women than men.

[MBP&O2/O]

It has never affected me. My longest trip without touching land or having any opportunity whatsoever to leave the ship was 65 days and there was nothing like that at all when i eventually did get ashore. No time to feel ill... too much work🙄

It would be interesting to know why it affects people. 

Perhaps when on a very long trip your body just adapts?

[dickinson]

2 hours ago, MBP&O2/O said:

It has never affected me. My longest trip without touching land or having any opportunity whatsoever to leave the ship was 65 days and there was nothing like that at all when i eventually did get ashore. No time to feel ill... too much work🙄

It would be interesting to know why it affects people. 

Perhaps when on a very long trip your body just adapts?

Lucky you!  Something in the brain is not recognizing what our eyes are seeing so it thinks we are still on the water.  

[donaldsc]

13 hours ago, MBP&O2/O said:

It has never affected me. My longest trip without touching land or having any opportunity whatsoever to leave the ship was 65 days and there was nothing like that at all when i eventually did get ashore. No time to feel ill... too much work🙄

It would be interesting to know why it affects people. 

Perhaps when on a very long trip your body just adapts?

 

This from the Cleveland Clinic site.  Most people are not affected.

 

How common is MdDS?

Mal de débarquement syndrome (MdDS) is rare. Some studies suggest that approximately 150,000 people in the U.S. States have the condition.

[clo]

On 9/12/2024 at 5:34 AM, dickinson said:

FYI - If it lasts no more than a month it is Mal de Debarquement.  If more than a month then it is a syndrome.  it also affects many more women than men.

Thanks. Could you provide a citation that supports this?

[dickinson]

6 hours ago, clo said:

Thanks. Could you provide a citation that supports this?

https://mddsfoundation.org/about/

Look in the FAQ under How long does it last? I'm 2 weeks out from a cruise.

 

There is lots of other info on their website.

[donaldsc]

12 hours ago, clo said:

Thanks. Could you provide a citation that supports this?

 

Try typing "Mal de Debarquement"  into Google for all the info that you need.

 

DON

Edited September 14 by donaldsc

[clo]

4 hours ago, donaldsc said:

 

Try typing "Mal de Debarquement"  into Google for all the info that you need.

 

DON

@dickinson already replied. Google is my best friend but sometime I'm not in position to do a search