MAV vs. MdDS

After reading as much as a could at this site, I still cannot determine the difference between MAV and MdDS from the posts. Can anyone help? I have tried many preventives going slowing, attempting to wait our the SE’s, etc., been on and off benzos, and still live with head pain, pressure, and constant vertigo.

Basically, my case has been presented from Atlanta, to Balimore, to Boston, to Chicago with no answers. Sometimes suffers have more incite than doctors.

Thank you,
Sally

with mdds it’s more common that one gets relief from passive motion (car etc.), however there’s a type of mav that mimics mdds in pretty much every way; difference is it responds to migraine medication. So there’s not a way to know for sure unless you try veraprimil or similar medications I believe. I’m not sure what I have myself, though I get some migraine sensations like strobelight vision, tastechanges and weird body-sensations along with the level of rocking (today my rocking is very low).

That’s what dr slater said I believe.

/ Mikael

Sally…i will tell you only what i have heard or read. Mal de debarqument starts up after taking a vacation on a Cruise Ship or a Plane ride…chances are increased the longer you are in-flight. I also heard a long car ride could bring it on. I visited the Mal de debarquement forum a while back and the folks there tend to describe the condition like they feel a rocking/moving sensation when they get off a boat or a long plane ride. But it’s mostly their surrounding that feels this way. But then some MAV folks feel this too. My surrounding is normal…but it’s inside me that feels the motion and the motion is mostly felt in my head but it affects my equilibrium. I believe (although i could be wrong) most Mav folks feel like they are moving rather than their surrounding is moving.

My doctor at UCLA who diagnosed me with Migraine Equivalent also known as MAV said that a sizeable amount of people who have MAV or even chronic run of the mill migraines tend to be people who never out grew Motion Sickness. They have always been motion sensitive. That is most definitely me. I have always been Motion Intolerant as far back as i can remember when it comes to drving in the mountains in curvey roads + amusement parks that go in circles and on fishing boats. I have never tolerated these situations. I become extremely sick.

Anti-anxiety medication has been a tremendous help and Verapamil has helped some.

Joe

I never had motion sickness as a child, so never got to grow out of it, but I have migraine and MAV.

Not sure what you mean by MdDS; meniere’s disease? Could you explain?

I don’t know that any of these things are easy to diagnose, or to treat even if they are diagnosed correctly. Even if they are diagnosed correctly, they are not well understood by the medical people, either. It’s not fun to be a medical mystery.

mal de debarquement syndrome. Also thought to be related to migraines by some doctors. I think dr. slaters opinion is that some with mdds symptoms are helped by migraine-treatment and thus it’s really mav, whereas others aren’t helped.

Also mdds is mostly related to travel, like you get of the boat and a few hours later you start rocking. Though I think it can happen up to a few days later and in some cases spontaneously (maybe these are more likely to be migraneous). That’s why I don’t know whether my symptoms are migraneous or not, as I woke up two days after my month of backpacking with these symptoms.

The most common “treatment” for mdds is klonopin, valium or amitriptylene. I’ve tried no treatment whatsoever to this point, but will probably start with amitryptylene in a couple of weeks as that can help íf my symptoms are migraineous as well. This has been going on for 4,5 months now and it sure aint no fun…

Sorry, never saw it named by those intials before. It is a long diagnosis to type out…

Try ten years. Just as much not fun. Only longer.

ouch =(

well doesn’t treatment help?

Thank you all for trying to answer this question. So far I have not been able to get the same answer from even the "experts’ in the field. You’ll are probably more experts than the doctors.

Sorry, Mikael, neither benzos or migraine meds have made much of a difference except to make me worse. Maybe I have both MAV and MdDS.

Joseph, I feel like I am moving sometimes and sometimes my surrounding are moving. Never consistant.

TY

Sally

Hi sally ,
here is somthing you might want to see.

the moderator sent me this from the MDds site just yesterday,

**I’m sending out this notification that Discovery Health will be airing
a show about MdDS beginning Dec. 1 at 10:00 EST. It will be on
Discovery Health throughout the month of December.
one of the members of our support site, and her family.
I believe it is listed under “the woman that rocks” or something along
those lines.
For a complete listing of show times just visit Discovery Health
network. You may have to access Discovery Network if you can’t find a
direct link to Discovery Health.

I hope eveyone will get a chance to watch this program and share it
with your family and friends.**

hope this helps.
jen

Hi Sally ,
did you see this one.
abcnews.go.com/video/playerIndex?id=4180415

Yes, thank you. Still no answers but lots of complications.
Sal

I will watch the Discovery Health Channel if we get it. Thanks for that.

Sally neither mav nor mdds are well-understood conditions. A syndrome is just a name for a bunch of symptoms, and as along as that doesn’t offer a cure or treatment, it doesn’t really matter what the name is. You could just as well call it sally-syndrome.

I bet a 100 years from now the brain will be much better understood and thusly all of these neurological conditions that today remain a mystery will be easier to deal with. Too bad we’re all dead then =/

Mikael