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Mal de debarquement video, ABC

Hi all its jen , Deb from the mdds site has sent this in ,
it’s a video from the medical mistery show, Deb is the blond lady on the show.
it shows how mdds feels for most people,
these are the very same symptoms I have 24/7
is this similar to all of you?
do your symptoms go away driving in a car?
reason I ask Is some mdds ers believe mdds is probably migraine varient, but other dont.
thanks
jen

check this out
abcnews.go.com/video/playerIndex?id=4180415

Jen
I was surprised when I watched the video, because they describe that they see the world around them move. Does it look to you like things around you move? I just feel like I myself am moving (rocking/swaying), but everything around me looks normal.
Anette

Jen,

I replied to your PM but thought I would reply out here as well. This is so danged close to what I experience it is frightening. To see someone visually describe it using a camera like that was amazing. About the only thing they didn’t include in their description that I experience is hearing problems. I also get low frequency loss that always returns to normal, and I also have tinnitus that occasionally goes away.

Annette,

The only time that I actually see things move around like they showed is when I am tired, stressed or getting a really bad spell. This was quite often before I started taking the migraine meds. Most of the time I feel like things are rocking/swaying/TILTING, but I don’t see it. When I do see the rocking/swaying/tilting it is very gradual and slow as shown in the video.

BINGO! I especially related to the woman’s use of the word “violent” which is how I’ve described my dizziness so often over the last year or so - it can be absolutely violent.

I also related to the woman’s tears. I remember often being in a doc’s office and having them do balance testing, which always sent me to tears when I realized how bad it was - I used to be a dancer.

Thanks for the link, Jen, i’m sending it to everyone I know.

Julie

Hi Jen,

I am just the opposite…i am moving while everything around me is still. Driving does ease the condition but if i don’t take my medication, even driving can be somewhat uncomfortable. When they speak of violent…that is true. At my worst i feel like i’m Deep Sea Fishing. So although my doctor at UCLA said that Migraine Equivalent and Mal de Debarquement Syndrome are in related families…you are either one or the other. If you have MDDS…the world around you is moving violently…if you have MAV or Migraine Equivalent…you are moving while the world around you is calm. Also…my condition began with periodic Vertigo Episodes…similar to like Benign Positional Vertigo and then evolved into Migraine Equivalent.

Thanks for sharing the video.

Joe

— Begin quote from “Anette”

Jen
I was surprised when I watched the video, because they describe that they see the world around them move. Does it look to you like things around you move? I just feel like I myself am moving (rocking/swaying), but everything around me looks normal.
Anette

— End quote

Hi Anette, funily enough thats what some of the MDdsers said as well.
some of them only feel the movment internaly not visauly, I have both.
when my visaul side of things calm, I feel it inside.
jen

I also have both. when asked if the world is moving or if i’m moving - i say both. so i guess i don’t fit exactly into either category in that way, but i have such vivid migraine aura, mine was an easy diagnosis, i think. Plus, treatment has helped, which confirms it.

Julie

Hi Julie,
I have both, I know this because when I’m in a pitch black room, or eyes closed, I rock or swirl internaly.
I’m doing ok on the verapamil, but last night got a bit of a scare, my heart rate when sky high for a couple of minutes, then settled then a half an hour later it happend again, so I dont know if the verapermil will be able to be taken any higher in my case, the last thing I want is to go into tachy again.
the doc said this could happen if I took the dose higher.
but so far 270mg has helped lower symptoms and for me that’s a bonus.
I’ve just got to come to terms with the fact that I may never be completly rid of all my symptoms for long,
there is no cure for mav or migraine.
and at the moment I’m just not ready to except that!
dough!
jen

jen, thanks girl for posting the video here too! i cried and cried when i watched the video. i watched it with my husband and then my parents…

joe, i am not doubting what your doctor said about the difference between MdDS and MAV, but to me it almost seems like it should be backwards… MdDS should be subjective movement and not visual movement of the surroundings?! i dunno, it just seems like it would be motion you feel because that is what you feel on a boat or on water or on a plane, etc. you take the motion with you…

now for migraine, seems like it could be either way?!

but what do i know? not much!

i am eager for other people to respond to see if they fill the exact same way but WITHOUT the water or plane exposure - and if they have been diagnosed with MAV or “migraine varient” or what.

one more question - do you all feel like this pretty much 24/7 like true MdDSers do??? at least some kind of motion all the time??

my motion changes… sometimes the floor is tilting or pitching, sometimes it jerks…

sometimes the bed tilts, sometimes i am sky-diving but falling on my back instead of on my tummy…

sometimes i feel like a chicken on a rotisserie (can’t spell that)…

sometimes i feel like i have just gotten on a ferris wheel and it quickly jerks back and i feel like i am being lurched forward…

sometimes i am being pulled on a swing but whoever is pulling me back or to the side never lets go, i keep getting pulled and pulled…

there is more but that is enough for now!

Hey Dj , so funny I just finnished posting you on the mdds site.
yep I howel’d like a baby when I saw it, by Gingos you’d think I was over crying about this stinky crap rotten i’llness.
But just to see someone eles talking about these symptoms did it to me again.
what brave women were they doing a interview like that the way they feel every day.
people like that humble me.
I know Deb said she wasnt happy with the way the interview went , but I think she did an awsome job!
yes to your question , Do I feel this 24/7 ( rocking )vision, get worse during and after a migraine,
DJ youve had all the ent work ups havent you?
it’s just your symptoms do sound some what different to mine.

Jen, could you send my thanks for Deb for doing that interview? I could never have done it myself. that must have taken a lot of courage and must have been a stress on her symptoms.

DJ - my symptoms did not come on after exposure to travel. I am confident that mine are migraine-related because I have constant visual, auditory and olfactory aura as well. Plus, I just feel like I’m in a migraine all the time, which is what I’ve been telling people for 5 years, but nobody would listen - that’s why I’m so glad I found this forum.

Your list of symptoms, yes I have variations of all of those, not as severe/violent since treatment. I don’t wake up each morning dreading how bad it will be all the time.

yes, I cried when I saw the video and my husband cried when he watched it. Even though he’s been by my side the entire time he “had no idea” just how bad it was.

I so relate to these women, I just hope that Kim’s (“the diva”) symptoms don’t get worse for her. Her movement of the camera seemed pretty mild to me - I would have been shaking it back and forth violently.

Jen, I also have come to terms that I will always be an MAVer. I just hope to find treatment that will help me cope with the rest of my life. That’s what I worry most for all of us, what does the future hold? I’ve watched my mother get old and frail, she’s in assisted living now.

Prayers to all of us,

Julie

Jen,

One more question - why was Deb not happy with the way the interview went? I thought she did a great job. Was she unhappy with ABC?

Her husband was great too, wasn’t he?

Julie

Julie…so your symptoms are more like the ABC Video? That is scary! Although…mine can be just as rough w/out medication. But i am the one (inside my head) that’s moving every which way like Deep Sea Fishing and the rest of the world is for the most part calm. It is so weird! Other way i have described it is when you step into the Ocean and water is Chest deep and you just stand there…and the little choppy waves bump into you from every direction…well that is what happens to me…especially on a bad day.

Joe

You know, reading the replies to this post, I now realize that I need to clarify my experiences. I am like Joe, I feel the motion, I don’t see it. It’s as if I am moving, tilting, rocking, while everything around me is stationary.

Think maybe we can get ABC to do an article on MAV? :stuck_out_tongue:

— Begin quote from “DJDizzy”

one more question - do you all feel like this pretty much 24/7 like true MdDSers do??? at least some kind of motion all the time??

my motion changes… sometimes the floor is tilting or pitching, sometimes it jerks…

sometimes the bed tilts, sometimes i am sky-diving but falling on my back instead of on my tummy…

sometimes i feel like a chicken on a rotisserie (can’t spell that)…

sometimes i feel like i have just gotten on a ferris wheel and it quickly jerks back and i feel like i am being lurched forward…

sometimes i am being pulled on a swing but whoever is pulling me back or to the side never lets go, i keep getting pulled and pulled…

there is more but that is enough for now!

— End quote

DJ, I am not sure what you are trying to describe if you feel things differently than the video, or if you expereince what is shown in the video plus this extra stuff. I can say that I experience what is in the video and what you describe. As I said in my previous post, I feel it, I don’t see it.

I think I know what you are talking about with the swing. I used to describe it as a rushing sensation in one direction or the other. The worse part of it was that my eyes would try to adjust for this false sensation, and I would have to conciously fight what my eyes wanted to do in order to look at something.

By the way, it was 24/7 for over 18 months for me. Before that it was off and on for about five years; a couple days here, a few days there, the better part of a month at other times. Since I started taking medication, I now only get the occasional spell ranging from once a week to once a month, nowhere near as strong as what it used to be.

Guys,

I was thinking the same thing - I would love to see the same type of news story done on MAV! hmmm

I actually experience both - the rocking and swaying, like if you were standing in an ocean, and it can be violent sometimes, more than just a gentle rocking. I also, at the same time, see the world moving, just like Deb showed in her video. Kim “the diva” showed a much milder symptom of the world going back and forth - that’s how I was before my big crash. Now things sometimes move around violently.

It is hard to be clear about this stuff, isn’t it? I wonder if our doctors really know what it’s like for us.

Julie

Brian,

Is a benzo the only med you take to help??

DJ

I usually FEEL the motion, rarely does my vision move and when it does, it isn’t nearly as violent as on the ABC video. …knock on wood…

DJ,

I take two meds as a preventative, and one is a benzo, Klonopin. The only thing that I have found that works for the occassional spell I get is valium and laying still.

Yep I will julie, yes her hubby is a great help with the mdds support group , he gose to medical confrences as well raising awareness ect, God luv him.Without pay I may add.

I think Deb said she wished she didnt come over like a typical teary girl, but hey I think she did a fab job, it got the piont accross .

by the way while I’m here, dose any one here get flooded thoughts like:
in the morning before I’m fully awake, my mind is busy with unfamiliar picture places hundred running through my head , none of them having any rhym or reason, it happens just before my migraine as well. so distracting.
just thought it is part of my migraine, CRAZY GIRL!!!

I have also smelt musk lollies and dead ants smell.

he he.

I’m doing ok on the verapamil , but ive had a couple of tachy episodes so I’m just taking it easy for now, hope it will settle soon.

jen