I was wanting to see if others can relate to this. I have been up and doing things all day and felt pretty good, the dizziness (rocking feeling) will hit every time I stop and am still. Either sitting or standing still as soon as I stop it hits. I have not been diagnosed with MAV yet, but thinking I could have it.
thanks!!!
Sarah
This is almost always how my condition (whatever it is) acts. But on really bad days, or depending on the nature of my symptoms at that time, I may have the rocking, swaying, dropping, tilting feeling while walking, too. That’s when I really want to give up. To this day, I still think I fit into Disembarkment Syndrome more than MAV.
Sarah, after thinking about this for almost two years, I think the “feeling worse when stopping” thing is just a sign that there is something wrong with the vestibular system. In other words, it takes longer for you to reach an equilibrium than it did before.
Think of it this way: when a “normal” person gets off a roller coaster or stops after twirling around, there is a period of time when one feels dizzy, like they’re still moving. For people with vestibular problems, it takes less stimuli to cause the same effect (i.e., stillness after a car ride creates the same sensations as stillness after twirling around.) This is what happens to me when I stop moving around or after a car ride. People who have vestibular issues just have a more exaggerated response to sudden stillness.
— Begin quote from "KennedyLane"
Sarah, after thinking about this for almost two years, I think the “feeling worse when stopping” thing is just a sign that there is something wrong with the vestibular system. In other words, it takes longer for you to reach an equilibrium than it did before.
Think of it this way: when a “normal” person gets off a roller coaster or stops after twirling around, there is a period of time when one feels dizzy, like they’re still moving. For people with vestibular problems, it takes less stimuli to cause the same effect (i.e., stillness after a car ride creates the same sensations as stillness after twirling around.) This is what happens to me when I stop moving around or after a car ride. People who have vestibular issues just have a more exaggerated response to sudden stillness.
— End quote
That makes sense yes, just wondering if it could be MAV.
Guinevere,
Just my personal opinion here, but I think that the diagnosis of “spontaneous MdDS” (symptoms NOT initially caused by passive motion like a cruise ship, car ride or elevator) means absolutely nothing. For the life of me, I don’t know why people who weren’t initially triggered by passive motion, but who have sensations of rocking (no matter the cause) that are relieved by passive motion, are given the separate diagnosis of MdDS. What good does that possibly do??
Some with hydrops (Meniere’s), whiplash, auto-immune disease of the inner ear, migraines, and passive-motion caused problems (from a cruise) can have similar traits but different causes. It makes no sense from a treatment point-of-view to lump all those people in together with an MdDS diagnosis. It’s like saying everyone with toe pain should be labeled the same. Perhaps one person has a broken toe and another has gout, even though they both manifest with toe pain. It would be ridiculous to have a foundation devoted to toe pain when the etiologies and treatment of the problems are so diverse.
I do understand that there is some overlap between causes of vestibular issues. But, I believe this just means that science hasn’t progressed enough to be able to differentiate between the etiologies in many cases. (This is where an organization like VEDA is useful, to help steer a person in the right direction.) I completely understand why the MdDS Foundation exists for those with a clear motion-triggered cause, but to try to corral everyone who meets their broad definition (no matter the cause) into one category makes no sense to me. The MdDS community claims that the hallmark of MdDS is a rocking sensation that is relieved with passive motion (no matter how it starts). But, can something really be the hallmark if it’s found in a variety of different pathologies?
Perhaps if the syndrome was re-named something other than that of a pathology with a clear-cut trigger (passive motion), it would make more sense to me. But to lump everyone with different etiologies into the same category seems like it would be confusing to many people and has the potential to lead many people astray in terms of finding proper treatment.
Again, I want to emphasize that this is my own personal opinion and that others may disagree with me… I’m only bringing this up, Guinevere, because it would be a shame for you to be side-tracked with the pursuit of treatment for MdDS if the underlying reason for your illness is migraine. I believe the label of “MdDS” means nothing unless you were on a cruise ship, airplane, elevator, car and developed problems shortly thereafter…
Kennedy, I’m not trying to clump anyone together, I assure you. Truth be told, I’m not certain what I have, and since there’s no definitive diagnostic testing, none of us know with absolute certainty what we have. Many people could make the argument that people with a certain set of symptoms are labelled as migrainers, and are given very strong medications, all without a definitive test to lend validity to the diagnosis.
Having said that, I ask that you not treat my comment regarding MdDS as many have treated those who suggest that Lyme disease is at the root of their symptoms. I have no personal agenda here, nor am I trying to sway anyone away from MAV treatment. I’ve been very open about my skepticism regarding both disorders. Which is not to say that I don’t believe that they exist; of course they do. But I won’t claim to know the root of what ails anyone, including myself. I was simply stating that for me, my symptoms fit MdDS more than they do MAV, but my symptoms didn’t follow a sustained motion event, either, therefore I have my doubts.
In the end, it wouldn’t really matter, because MAV and MdDS are treated roughly the same. People need to go down the treatment route that works for them; I’ve never been one to force-feed my opinions to others. We’re all lost here, and I made a simple comment in passing. It held no more weight than anyone else’s words, and I don’t expect it to be treated as such.
Whoops. Sorry, Guinevere. I didn’t mean to offend you.
What I was trying to say, in a long-winded fashion, is that I, personally, don’t believe in such a thing as “spontaneous MdDS.” I think that unless someone has been exposed to recent passive motion, they should look for another explanation for their dizziness (migraines, whiplash, Meniere’s). To be diagnosed with spontaneous MdDS is meaningless (to me)… only that you share the same symptoms as those whose brains adapted inappropriately to the motion of a ship (or car, etc.). It doesn’t mean the cause or treatment are the same.
Why people who similar symptoms (but different etiologies) are lumped together is beyond me. (I’m not saying you’re doing this.) Comments on the MdDS board state research shows that people with MdDS symptoms always have a central etiology. I don’t buy it. In some cases this is true, but I believe people with inner ear disorders can also manifest with rocking that is relieved by passive motion. There is nothing special nor definite about this set of symptoms.
Again, sorry to come across like I was treating you disrespectfully. I honestly didn’t mean to offend you. My apologies.
but if u are diagnosed with mdds isn’t there no treatment? so why not give migraine treatment a crack, there’s nothing to lose right? i think they are theorized to be related in some way?
I also get rocking feeling when I’m still. It lessens when I’m in motion and vanishes when aboard a vehicle. Its so mysterious and frustrating.
My misunderstanding, Kennedy. I apologize. I obviously took your words wrong, which can so easily happen without hearing the inflection and tone in one’s voice. Never the less, my mistake.
I agree with you on many levels. I just wish we could find more definitive answers, as I’m sure we all do. I’m not being argumentative at all when I ask you this. I’m really am curious, because I, too, am still seeking answers. Do you believe these symptoms are related to the ear, or MAV? Or are you saying that you think they’re one in the same?
I’m somewhat familiar with vestibular issues, but I’m no expert. What can spontaneously occur with the vestibular system that might lead to these symptoms? I just wonder: if it’s simply vestibular and not migraine related, can spontaneous reversal occur?
Thanks, Kennedy. And again, forgive my misunderstanding.
Guinevere
Here’s an interesting article written by Dr. Cha, who writes frequently of MdDS. mddsfoundation.org/wp-conten … a_2009.pdf
In it, she states that the incidence of migraine in people with initial motion-triggered MdDS is only slightly higher (22% in true MdDS cases v 17% female control group)than migraine in Non-MdDs people. However, in spontaneous rocking, the incidence of migraine is much higher than the baseline population (73% v 17%). That suggests to me that “spontaneous MdDS” is not at all the same as true motion-triggered MdDS and has a different cause (likely migraine), even though the symptoms are the same.
Again, to me, the label “spontaneous MdDS” is meaningless and may lead people down the wrong path. Just because you rock or bob and that sensation is relieved with passive motion, does not mean you have anything at all in common, cause-wise, with those whose symptoms were triggered by a cruise or airplane ride.
I believe that many different pathologies can cause rocking (seemingly spontaneously) that is relieved with passive motion… migraines, inner ear disorders, neck injuries. In my opinion, the label “MdDS,” spontaneous or otherwise, should not be used for any problem unless it was initially sparked by passive motion.
From the article: “Some neurotologists consider MdD to be related to a history of migraine, but the relationship
is not straightforward. The high female prevalence is shared by both MdD and migraine, and
both disorders are reported to show symptomatic fluctuations with the female menstrual/
ovulation cycles. However, in Hain’s study, only 22% of 27 subjects met criteria for migraine.
4
Our own study also showed that 22% of the subjects with pure motion triggered MdD had a
history of migraine, which is not significantly higher than the population baseline of ~17.1%
in women and 5.6% in men.
25
However, the prevalence of migraine was significantly higher
at 73% in patients who developed
spontaneous
perceptions of rocking, similar to MdD after
an initial motion triggered MdD episode.
3
Paralleling this, when rocking perceptions occur
spontaneously without any motion trigger, they usually occur in a background of migraine
(unpublished data). These patients are typically younger, experience many more episodes, do
not have as reliable a history of relief with reexposure to passive motion, and motion sickness
symptoms may be more prominent.
3
There is no agreed upon nomenclature for this group,
which has variably been called spontaneous MdDS, MdDS-like (where MdDS stands for Mal
de Debarquement syndrome), migraine-related dizziness, migraine-related vertigo, and
chronic rocking dizziness. Until a better understanding of the pathophysiology of the symptoms
is obtained, there is no rationale for further descriptive terms.”