Mal de Débarquement Syndrome (MdDS) English-Version

[@jancantrell8241]

You can also get MdDS onset spontaneous. I've had for 9 years. No remission. There's no cure for this rare syndrome. I've had all testing , ENT, neurologist, MRI, CT Scan, chiropractic, acupuncture, visualization, heart, vision, blood work all normal. It's debilitating.

[@studiojake5253]

So sorry Jan. "Onset spontaneous." Yes, twenty years ago I had it for a year and a half - no particular triggering event that I was aware of. I went to an ear specialist. On finding nothing, the Dr. suggested I google "Mal de Débarquement Syndrome." Sure enough, the description I found fit my symptoms. I found an online forum. There, I learned things could have been far worse. I cleaned up my diet and did acupuncture for awhile. I don't know if that's what made a different, but over time, symptoms went from 5-6 to 4-5 then 2-3 . . and one day it happened I noticed, Wow, no more mdds. This past March, air travel - two 6-hour flights ... and I've had MdDS ever since. Level of debilitation varies from day to day. After listening to the Dr. here on this youtube, I know I've gotta quit laying around and get moving WAY more than I feel like doing.

[@Monica-70]

Im 2 years in after a cruise with no relief. I'm guilty of avoidance and will push myself moving forward. Thank you from 🇺🇸

[@TaraRoseDavison]

Thank you for sharing this. I’ve been suffering for a month and just got diagnosed yesterday. This video motivates me to keep active. Praying to reset my VOR

[@gokulkrishna5552]

What diagnosis you went through

[@cindyfrancisco2990]

Yes who did you go see for treatment and diagnosis? What are they doing for you?

[@tararose3684]

I’m am better. It gradually faded over the course of about 3 months. VOR stands for vestibular ocular reflex. This is an involuntary reflex that allows the eye to stabilize images even when something is moving- like if you’re on a plane it doesn’t look like the chair your in is moving. MDDS happens when the VOR fails to reset after traveling in any type of moving vehicle, so you’re stuck in the wrong mode. That’s why the symptoms disappear when you’re moving in a vehicle again. I’m now extremely careful about travel- I only sit in the front seat of a car, pay extra for direct flights only and make sure me seat has a window and is near the front. It’s never fully come back, though I have had some occasional days with a much milder type of migraine feelings.

[@cortexjackal]

Did you do any treatment to reset VOR? I just got off a cruise and am dealing with with this :(

[@tararose3684]

@@cortexjackal There’s not much you can do. I met with a neurologist who had spent time studying the condition. He prescribed a month of SSRIs- not long enough to become dependent. My main advice is NOT to pay attention to the people who say they haven’t gotten over it for years. Your VOR WILL reset, but not if you bunker down lamenting in your house, no longer participating in life. You will probably feel like shit for a few months, no denying that. Be gentle with yourself but still try to do your everyday activities to some extent. Don’t give up and don’t believe people who say it won’t go away. Mine took about 3 months to reset and for about 6 months following that I would get intermittent migraines and short bouts of dizziness. It will go away though. It’s been 1.5 years since the onset and I’ve felt fine for most of the past year and I’ve been on 3 plane trips, which was how mine started. Now I only take direct flights and I will only sit by a window.

[@sarahfcouture1178]

I tried to watch your video, but couldn't because of the rocking picture of the boat in the background!!! If you have this syndrome don't watch it only listen to it! Im surprised they have a triggering picture like that on a video about this syndrome. My symptoms had calmed down after a walk and car ride...now...I'm back on the boat!!! Not good!

[@am2496in]

Thank you very much. This information is really helpful!

[@owieprone]

12 years and counting, plus 2 other medical conditions that make it worse when they flare up. What I love most about MdDs is Doctors treating me like a hypochondriac, ENT specialists for instance.

[@tilnei]

Yes its sad

[@jjqchomes8443]

The torment doctors pile on MDDs by referring us to psych. Yeah, 27 solid years of rocking - horrible

[@lisawallace5536]

@@jjqchomes8443 I didn't mean to like the comment but to let you know i know exactly how that is to be treated like you're mental. If only the EMT's & doctors could feel the same feeling. I'ts horrible and disabling to feel like the ground moves up and down even while sitting or laying down. I'ts been 24 years for me of this horror existence.

[@jjqchomes8443]

@@lisawallace5536 No problem!, I like /agree with comments too, but not the suffering. My heart absolutely goes out to you... ...because I've walked your path. Idk if we can friend or follow each other but it sure makes me feel encouraged I'm not the only long term person like this. I do think one of the more soul sucking aspects of this is friends/ people / MDs etc, not believing us. Extreme mental and emotional anguish.

[@nandritsis5183]

Yes! I specifically researched for an otolarangologist who specialized in vestibular disorders. I explained to him what i was feeling...he harshly responded with " IS THIS SOMETHING YOU FOUND ON THE INTERNET?", I was floored (and angry). I continued my visit with the Audiologist who was familiar with MdDs and calmed me. Unfortunately, no help from that visit. I'm relatively new to the rock and wave club 5 yrs, 1st was 6 months, then a few times of 2-3 weeks, my recent trip is 11 months now. My dr says its all considered vertigo, but doesn't get what I'm telling him. I have had MRI-nothing shows. It is frustrating but i do stay active hoping it will help.

[@ravijain4259]

I guess I have this issue. Two weeks back, I did my lawn digging with one repetitive movement for more than 4 hours. I was standing with legs apart and bent while digging/peeling top layer in order to remove bad grass & weed. I was also wearing progressive eyeglasses. With each digging action, my progressive eyeglasses used to shake and thus "simulating" a feeling that ground is shaking. My symptoms are not like BPPV where liquid and crystal takes time to settle. In my case, my visual frame shakes with head shake, but becomes still as soon as I stop shaking my head. I guess I am more than sure that it is not cervicogenic....because I did all possible home-tests for cervicogenic dizziness condition.

[@annasmith5676]

what kind of movement would trigger dizziness? Movements don't trigger dizziness, it is there 24x7 regardless of movements or its absence. Certainly some movements such as those used in vestibular therapies do exacerbate symptoms, but the main point is: a person is swaying rocking, bobbing and rolling regardless of movements, regardless of eyes closed or open and get symptoms while horizontal. A person could sit quietly on a couch and everyone around her thinks she is fine. Yet, this person is suffering tremendously and may be thinking about suicide to stop the "movement".

[@mileztriumph1996]

True

[@8QQ8]

Do you sway side to side , up and down or back and forward?

[@leodash5835]

its been two years since these things began I didn't go to a doctor and I should have any was it goes away and come back what I notice is that if your diet is good and you phisically active it gets way better now these days I have to stand for hours if I weren't physically active before standing It gets bad and one last thing I believe its A psycological thing too wish the best to you all

[@luvinmusic1]

Is it common with MDDS to also feel like you're incapable of walking or can't walk far distances without feeling like you may faint?

[@dinok7098]

how have you been feeling?

[@luvinmusic1]

About the same able to walk better but just feel like I'm rocking all day not sure what the issue is

[@cindyfrancisco2990]

@Dr Weiss, I had this several years ago following a weeks cruise and it lasted for 3 months, it finally went away on it's own. I notice when I get stressed, maybe the low CO2, and after long periods in the car (12 hour drives)and after being on our boat the bobbing sensation comes backIt might lasts a day or up to 4 days. I want to go on another cruise, am I crazy for thinking of this? Should I avoid a cruise althogether? Thank you for your input.

[@DrWeiss]

There is no general answer here. You will probably feel comfortable on the ship. After leaving, you may experience symptoms again. It is important to stay relaxed and breathe slowly. However, there are colleagues who recommend avoiding any kind of sea voyage.

[@tilnei]

I got reset with my first episode after 8 months as I rejoined my husband's vessel for 5 months but this time it didn't work went thrice but no luck

[@ultrakenshiro]

Ive had a rough time with this. All started after a 5 day houseboat trip and when i felt dizzy on dry land i expected it bc ive felt that feeling before when doing this but usually goes away in a few days but it just never went away. Sometimes i have a few consecutive days where i dont feel dizzy at all but thats rare these days. Been to a few doctors and blood tests and CT scans come back normal. Ive had major anxiety and depression from this causing me to lose appetite and weight loss. The malnourishment is causing bone and joint pain from it. Ive gotten a hold of my anxiety and depression for the most part but still feel some pain and the dizziness is just super annoying as always. I try to work out and keep up with exercise. Also regained appetite and eating more now. The only relief i have from it is laying down on couch or bed or sometimes even just sitting and of coarse while i drive a car i dont feel it at all. Wishing this would go away. Hard to believe dizziness caused all these additional issues in recent months.

[@kevsan4850]

How are you doingc

[@gregcox6165]

More exercise is not necessarily correct: use calming, sensory shifting exercises such as eyes open then eyes closed while concentrating of the sensation from the feet. As the patient masters this, THEN add progressively more stimulating vestibular activities always returning to sensory shifting as a “reset”.

[@carinapearson9040]

Greg Cox I am very intrigued by what you’re sharing. I have this and I’m trying everything. Are there any resources you can recommend? And if you’re a Doctor where are you located? Thank you!

[@T-L0206]

Hi Greg, do you have any KZbin videos on the information you are providing? I would really like to try the things you are explaining. Thanks.

[@gregcox6165]

@@T-L0206 I don’t, as these are given individually to patients after they have been evaluated.

[@britanymarin6094]

Are you able to make a youtube video showing these exercises and sensory shifting drills? And where are you located?

[@gregcox6165]

Clinically, all Mal de Debarquement patients I’ve seen, every one, had an underlying vestibular disorder. Proper diagnosis MUST include high frequency VOR testing as calorics are an utter joke, and during positional testing with ENG mental tasking conversations MUST be done to determine utricular function (Note to practitioners: avoid the party line that nystagmus must be seen in a minimum of 3 positions, this is total hogwash as utricular function should NEVER manifest as nystagmus in any position at rest). Pharmacology must never be engaged as this actually slows CNS compensatory mechanisms. Next, vestibular therapy needs to include both VOR exercises as well as sensory shifting drills (cognitively shifting away from negative vestibular inputs to correct vision and proprioception inputs). Mal de Debarquement IS treatable.

[@furygaming6589]

Greg Cox Sir I believe i have Mdds is there any way for me to contact you?

[@TaraRoseDavison]

Please post some MdDs exercises we can do at home

[@milkcow]

Since you know how to treat it please share your info with all of us instead of giving us false promise. If you know how to treat it successfully more so than scientists who study it, enlighten us all. There are treatments available however not everyone is cured. My treatment helped me but I continue with many problems.

[@milkcow]

I was checked for nystagmus and didn’t have it, but I have MdDS. Of course this is treatable but to what extent is your treatment curable and sustainable? Where is the peer reviewed published research for your treatment? I pretty much read all the leading researcher’s publications. So enlighten us with yours. Please.

[@gregcox6165]

@@TaraRoseDavison here is one we do a lot in the clinic: standing barefoot in front of visual target, start gently and rhythmically rocking the body while keeping eyes fixated 10 sec., now close eyes and continue with the body rocking 10 sec. then stop, open eyes and hold still. Repeat 5-10 sets daily.

[@deb52500]

I went to your website to see if you could download the exercises but it was all in German. Any chance you can find your exercises in English somewhere. I experienced MDDS but am doing much better after vestibular therapy. Would like to try a river cruise but uncertain if this is possible and if it woudl return? thank you

[@DrWeiss]

We are working on an app for MdDS. The first version in German is available for free: labs.medianisten.de/schwindelapp/login In the future we want to develop an English-Version, too, but this is quite a bit of work!

[@surprimeDIMSIM]

@@DrWeiss This app says it is for vertigo treatment on the website, does it have the same treatment effect on MDDS symptoms?

[@simoneshelley8425]

Has anyone ever gotten this from riding an elevator? If i am still I don't feel any symptoms, but if i move my arms or walk then i feel like im bobbing up and down, or like my stomach is dropping, mixed with dizziness. Is this MDDS?

[@lisawallace5536]

That's exactly how it feels for me. And the elevator makes me worse.

[@leslieladyhawke]

Where can I go near Dallas/Ft Worth, Texas, USA area to get this therapy?!

[@djToniTontonNewZealand]

my best friend sails for 30 yrs on super yauchts she has now retired at aged 53 she suddenly gets vertigo what should the doctor do, its not depression, shes a fitness nut and perfectionist, business woman, we are in lockdown 4. all test give no answers still.

[@HoneyWabbit]

Thank you!

[@lilykimberlyflowersinwestc1631]

Do you know what can be done to avoid mdds altogether? I have a cruise coming up ( I have anxiety and depression) and fear getting this?

[@cortexjackal]

It seems like anxiety may be a risk factor for this. Been doing a lot of research and lots of the people who get it seem to have anxiety as well. I dunno, I wish I'd never gone on the cruise to be honest. It's hard though when you have already booked it and put money and time and planning into a trip. But yeah... this mdds stuff sucks. I also feel like if and when I can get mine to go away, now I have to guard against it for thr rest of my life.

[@ljproducer69]

thank you

[@leslieladyhawke]

Ive been diagnosed with this. Ive had it over two months since the cruise.

[@SFR75]

and how do you feel now ?

[@leslieladyhawke]

SFR75 It finally went away. Although once in a blue moon it returns for less than a day from moving around too much.

[@dinok7098]

@@leslieladyhawke what did you do to help it?

[@leslieladyhawke]

Almedin krlic I took a medicine I cant remember for a few months. It helped a little. But mostly time cured it.

[@dinok7098]

@@leslieladyhawke gotcha. who diagnosed it? and im having these symptoms since july 5th so about a month n a half. havent been diagnosed yet, but i strongly think its mdds, especially since when driving or riding in a car the symptoms seem to fade away. I hope mine goes away with time as well.

[@888biblestudy]

Had this since 1982, Diagnosed 2009

[@deborahtofflemire7727]

Have not been on a ship never never got it after new jabs 8 months ago.

[@annasmith5676]

My symptoms are worse when I lie down. WHY? Nobody can explain it. I have spontaneous MDDS. When I drive, I have no symptoms. But the second I stop at traffic light- oh, boy! I have it ALL THE TIME since 2014, before that, starting in 2008 the symptoms would come and go.

[@DrWeiss]

With MdDS you always have a prompt relief, when you are exposed to an stronger passive movement (car, ship, train, etc.). The moment you stop (climb out of the car) it becomes worse. This is "normal" in MdDS! Probably the external movement overrides the maladapted feeling of balance..

[@annasmith5676]

@@DrWeiss Thankyou

[@annasmith5676]

@@DrWeiss When do you increase CO2 levels? I saw that during head bends a person was holding her palms under her nose, therefore breathing CO2. Could you get more details? And I agree, one need professional support and encouragement to re-boot his brain.

[@DrWeiss]

@@annasmith5676 We have a whole online-program, but at the moment only in German. But we will probably translate that into English

[@tilnei]

@@DrWeiss how long is your protocol . I live in india and had found yout website in december 2017 and was waiting to see if you had any sucess with treatment.. subsequently I saw this video a while ago which has updated information from you and also saw you have been added to the mdds foundation site as a dotor who treats such . My daughter is married and lives in tubingen area currently and we had discussed the possibilty of getting treatment from you . As soon as this covid 19 is figured out I would be really interesed in doing your protocol .since India is currently in lockdown and no flights are allowed in or out of the country this is why i mention how long would your protocol be for and if it can guarante relief since you have added the vor protocol used by mount sinai.and I would need to take up residence in mannheim as Icant travel daily from tubingen.

[@bryanneelizabeth776]

Can you get this from a rocking chair?

[@DrWeiss]

Any prolonged movement can basically trigger this. For example, car rides, train rides, roller coasters or even computer games.

[@bryanneelizabeth776]

@@DrWeiss thank you so much for replying. So this would essentially feel like a rocking sensation in my head when my body is still( laying down is when I notice the most) ?

[@amandar614]

​@@DrWeisswhat about rollerblading? I believe that is what triggered my mdds...

[@DrWeiss]

Yes, we also had patients who got MdDS after a rocking chair