MdDS Mal de Debarquement Syndrome: How I got sick from a 4 day cruise!

I am keeping a secret from you and it is time to tell you about this. It is the strangest thing! Remember my cruise back in August? Well, it made me sick. I tell you: I will never ever go on a cruise again for sure.

Immediately after getting off the boat I had this sensation that I was still on the boat. Everything around me felt as if I am still on the boat: the earth was shaking and I was swaying. Back then I thought this is funny. Well, I can´t laugh anymore about this. 

I mentioned this sensation on Facebook and to a couple of friends and some of them said that this is called Vertigo and will diminish after a couple days or up to 2 weeks. I relaxed a bit as it seemed to be normal. 

Well, 2 weeks past and the sensation stayed. It was (and is) very exhausting. I nap a lot and the first weeks it was impossible to go in the grocery store. I felt so sick, I almost felt the need to throw up a couple times. 

One friend told me that I should look up on YouTube some kind of "movements" because when she had Vertigo after a cruise a doctor told her that some crystals in her ears moved  and she needed to get them in the right spot again. Well, I found the Epley maneuver and tried it (countless times). But nothing. The constant rocking stayed with me. I later found out that if you do have Vertigo because of misplaced crystals in your ears it is easy to detect while performing the Epley maneuver you will get an uncontrollable eye rolling (Nystagmus). Well, I never had that, so obviously my ear crystals seem to be in the right place.

Thank God for the Internet. I quickly discovered what I have. It is called MdDS Mal de Debarquement Syndrome (french for "Sickness from Disembarkation").  This is a rare neurological condition usually occurring after a cruise, aircraft flight, or other sustained motion event. MdDS is typically diagnosed by a Neurologist or an Ear Nose & Throat Specialist when a person reports a persistent rocking, swaying, or bobbing feeling (though they are not necessarily rocking). 

Because most vestibular testing proves to be negative, doctors may be baffled as they attempt to diagnose this rare neurological syndrome. A major diagnostic indicator is that most patients feel better while driving or riding in a car or while in passive motion (YES! I can absolutely free of symptoms drive my car or even ride my bicycle!)

To make sure I have not another problem with my ears I went to see a doctor. She confirmed that there is no problem with my ears and it must be MdDS. The good news is that I can put a name on it now and don´t have to feel like I am getting crazy. The bad news: there is no real treatment and this can take month, years or in the worst case scenario forever...I could not even imagine!

You don´t know, how exhausting this feeling is! Sometimes I am not able to do the tiniest, simplest things- like cleaning out the dishwasher because it feels like I could loose every plate, every cup and break it. I am on a rocking ship! The whole time! That is why I took a little break from YouTube, did not snapchat at all and tried to do only a minimum on social media.

I do have better phases and worse and stress seems a big trigger to make this worse. Something in my brain did not understand that I went OFF the ship and thinks I am still on it. I also think that the stress I had because of a bee nest inside of the walls of my house after our return might have caused this sensation to simply stay.

I was actually getting better but 3 weeks ago it was so bad that I barely was able to function. I am in high hopes to get healthy but except for trying to live my life stress free and relax a lot (which is sometimes hard with a 10 year old boy) I can´t really do anything but wait. Wait for this to be over.

I wanted to tell you this because you are kinda my little web- family and I wanted to be open about this. Also: maybe this helps somebody who suffers from this sensation as well and has not found an explanation! If you need more information on MdDS I highly recommend this website: http://www.mddsfoundation.org  They also have a wonderful Facebook support group. It helps tremendously to talk with others about this, who suffer from MdDS as well. People who don´t know what this is, simply don´t understand. I have high hopes because at least I am "only" living since 9 weeks like this. Others in the group have it since 2 years or even more...which really scares me!

When I tell friends, that I am still feeling like on a boat, I always get the "look" as if I am crazy. I am not. The problem is, that I look from the outside "normal" but I don´t feel like myself. 

Thank you for listening ladies!