Mal de debarquement

Hi all. Could someone please enlighten me:

  1. Why is there a window of 2-3 days post-travel during which MDD can develop? Why not make the “cutoff” instantaneous (i.e. immediately after disembarking, making anything after immediately disembarking is not MDD)?

  2. Is MDD a variant of MAV or is there no correlation aside from MAV sufferers being motion sensitive to begin with?

  3. For the MAV sufferers who are EXTREMELY motion intolerant (I am one of those - it’s typically better when I’m driving but when I get out of the car or even stop at a light, watch out), do you all, as I do, feel much worse when getting off the car, subway, plane, etc.? If so, what causes that? Is it exacerbation of MAV or is it MDD?

I understand no hard and fast rules or answers here but welcome all thoughts. Just wanted to get a discourse going as I plan my next course of action and perhaps this will help others.

“Happy” to have found this board and thank you, S

Hi Serendipity,
You can find the answers to your questions from this site.
Dr Ch is a physician‐scientist in the Department of Neurology at the University of
California at Los Angeles (UCLA)the head of the new MDds research study, for the next 3 years.

Dr. Yooni Cha replies to the top 10 questions
The questions are:

1. There are different ideas of what is causing MdDS, including the “internal-model theory”, and
also that there’s a migraine-connection, utricle dysfunction etc. Do you feel that any given theory
gives an entirely satisfactory explanation and if so why?

***MdDS is a disorder of neuroplasticity. MdDS behaves like other disorders of maladaptive
cortical plasticity, like refractory depression, chronic pain, post traumatic stress disorder, and
tinnitus. These syndromes are all triggered by an initial stimulus that may be peripheral and
episodic, but they somehow become primary central disorders. These disorders have remissions
and unexplained recurrences because the brain retains a memory for the initial conditions that
created the perception of the symptoms. For example, tinnitus may start as an inner ear disorder
associated with sensorineural hearing loss, but functional brain imaging studies show that the
primary or secondary auditory cortex is hyperactive in these patients. The question is whether
there is some predisposition to this process or whether one just happens to be unlucky in being
exposed to the perfect conditions that allow this hypersensitization to occur.
I can’t see any reason why MdDS would be associated with actual damage to the inner ear. The
utriclar dysfunction theory has been proprosed but there is just no mechanism for utricular
dysfunction during the exposures that lead to MdDS. I can see how some damage to the inner
can cause rocking sensations, but there doesn’t seem to be any evidence that true damage to the
inner ear occurs in this disorder. One may argue that there is abnormal brainstem processing of
utricular function but this would be theoretical only.
There is a connection with migraine, but this is mainly with the spontaneous appearance of
chronic rocking dizziness in young patients with a history of migraine headaches (particularly
with aura) or in the re-emergence of the MdDS-like symptoms after the initial motion triggered
MdDS has passed. This is not surprising since patients with migraine tend to have other kinds of
spontaneous perceptual problems such as the aura, motion sickness, panic disorder, etc.

2. It seems MdDs can be retriggered without another motion-experience being present;
perhaps from a bad migraine or the flu etc. If you as a physician agree with this, would this point
to that there might be the same mechanisms going on for typical post-cruise MdDs, and for
people who exhibit the same symptoms without there being a motion-trigger present; especially
given that they too experience the universal sense of feeling better in passive motion?

***From my experience, the people who get this spontaneously behave a little differently than
the true motion-triggered MdDS patients. They seem to be younger, are much more likely to
have migraine headaches, and they don’t seem to consistently feel better with motion. Some
people feel much more motion sick with motion, which never seems to happen with true MdDS.
Patients with migraine are prone to experiencing all kinds of other spontaneous symptoms
related to motion. They are much more likely to motion sick and to be sensitive to visual motion.
There is evidence from transcranial magnetic stimulation studies that their brains are somewhat
hyperactive. That being said, the mechanism for why the symptoms start spontaneously would
have to be different between these spontaneous events and motion triggered MdDS, BUT, the
areas of the brain that are affected could still be the same.

3. Motion being the trigger, why do you think it is that it can take anything from a few hours
up to a few days before the symptoms start; this as opposed to them always starting immediately
upon cessation of motion-stimuli?

*Interesting question since some people do experience the symptoms right away. Often times,
patients who are getting MdDS after a cruise are almost immediately getting into another
vehicle, like a car or plane. I’m not entirely sure why the delay is there but if there is some kind
of “feed-forward” mechanism that is triggered in the brain by the motion exposure, then it may
take some time for these connections to become strong enough to start creating conscious
4. Do you consider medication such as benzodiazepines to be helpful, neutral or perhaps even harmful
in the goal towards having complete resolution of symptoms; especially in the earlier stages of mdds?

***There is no way to know if they are harmful in the longrun except to randomize dozens of
patients with MdDS to either the medication or placebo and do a prospective study. In general, if
the patient can get by without it, then I let them try. I am also careful about dose escalation
because of tolerance and dependency but this hasn’t been a problem, interestingly.
I usually use a small dose of clonazepam (a long-acting benzodiazepine) for severe symptoms. I
never use alprazolam (xanax) because it has too many problems with addiction and dose
escalation because of its short half-life.

5. Some doctors promote taking medication prior to further travel (regardless if the patient is in
remission or not), what’s your take on this? If you support medication, what have you found to
work best?

***I tell patients who are prone to developing MdDS (since many have recurrent episodes) to try
to get a lot of rest during their trips. Sometimes this requires taking a sleeping aide or a
benzodiazepine. Generally something shorter acting like Ativan or Valium would work, since the
person has to be able to wake up at the other end of the flight. This is only a significant issue
with flying, since people have to fly. Since patients generally don’t HAVE to take cruises or go
on road trips and I don’t have many suggestions for them, except to get plenty of rest during and
after the trip. Taking something sedating prior to the actual flight is probably not practical, unless
someone is with the patient to take care of all of the travelling arrangements.

6. A few members of our support group seem to only have this every other day (after perhaps years of every day symptoms). While it isn’t uncommon for this to happen for a little while as symptoms resolve entirely (or so I’ve read), for these people it seems they’re stuck in some kind of perpetual loop, now having it every other days for years. How could this be? Is there any good analogy with other diseases/things here?
***I don’t know why this happens, since the pattern is not consistent from person to person. But,
we have to be aware that the state of the brain is never the same from minute to minute and
definitely not from day to day. This is influenced by all kinds of stimuli from the amount and
quality of sleep obtained the night before, what is eaten, the ambient temperature, whether you’ve
just argued with your spouse, where you are in your menstrual cycle, what you’re thinking about,
etc. along with how much motion exposure is received each day.

7. Some think that there is a connection between mdds and migraines, and it does seem like migraines are more common among mdds-sufferers than the general population. This could of course be explained by simple correlation and not causation, or maybe that mdds is causing migraines and not vice versa. So is there any real connection?
***I see the connection being with MdDS sufferers who tend to get recurrent episodes and with
people who develop spontaneous onset of rocking symptoms. Some patients have also indicated
that they developed headaches or had a recurrence of their migraine headaches when their MdDS
symptoms started. But, I don’t see a much greater incidence of migraine in MdDS patients who
present with very typical cases. Migraine clearly does not explain the majority of typical MdDS

8. In your opinion, could MdDs have anything to do with neck-problems (cervical vertigo)?
*That’s very unlikely.
9. In your opinion, could MdDs be related to – or in fact be - Microvascular Compression?

***This is almost impossible. People who espouse this theory have to explain why getting on a
boat would make an artery and a nerve in the brainstem suddenly become closer to each other.

10. what is the relationship between MdDs and anxiety, if any?
***The symptoms of MdDS are clearly anxiety provoking. Some degree of this is in dealing
with an unresponsive medical system that does not validate your (the patient’s) symptoms. Some
of this is in not knowing if the disorder will ever stop. Some of this is because your normal social
support group falls apart when you can’t engage in normal relationships anymore.
However, I think that some degree of this might actually be part of the disorder itself. I’ve
noticed that people who have had MdDS for a long time will start to have a “spread” of
symptoms. They might become tremulous, get anxious, develop tinnitus, get headaches, etc. It
would be interesting to study whether MdDS sufferers had suffered from anxiety and depression
prior to the onset of MdDS. This would be very interesting in terms of coming up with a model
for why certain people get persistent disorders like this. This study would be hard to do in
retrospect because patients tend to overestimate how healthy they were before the onset of a
devastating disorder.

And if you have the time:

11. Where do you see the knowledge about this condition, as well as treatment-options,
going in a decade from now?

The next phase in understanding this disorder is with functional neuroimaging. We need to be
able to see how the brains of MdDS patients functions differently, processes information
differently, or has different baseline activity than asymptomatic people. My plan is to introduce
repetitive transcranial magnetic stimulation as a treatment option based on these functional
imaging differences. This modality has been approved for the treatment of refractory depression
and there are many positive clinical trials in its use for chronic pain and tinnitus. It has even been
used to improve ambulation in parkinson’s disease and can modify many movement disorders.
The challenge in MdDS is to find the right target and the right settings so there will need to be
many iterations of a treatment paradigm to get it right, but I don’t believe that more oral
medications will be the way to go.

Thanks so much, Jen. I hadn’t read this before. I’m new here and was waiting for a response in the “other illnesses” board but I guess my rocking and invisible elevator got to me and I posted it here. Moderators, please move it if you need to.

Does anyone here have a concomitant dx of MAV and MDD, or believe you have both even if not officially dx? Can you describe your sx? How do you separate the two? Thanks.

hey those are my questions :stuck_out_tongue:

Not that it matters Jen, but I think you couldve asked before you posted those here. Not that I myself care, but because this is what the agreement was on me getting the answers (that they remain on the mdds site that is).

The Internet is a public place where information is published for others’ use.
I referenced the information which is perfectly legitimate.
I have been a member of the MDds site for many years.
We/us mav’ers have shared info with the MDds’ers over the years, we all sick together and are in similar boats, excuse the pun.

One thing:
I was told “by” a forum moderator at the MDds site that they LOVE sharing their info about MDDS; it’s imperative as they are trying to make others aware of MDds, that’s what that forum is about remember?
Not keeping their illness in a closet.
Sharing information, being giving to others?

Deb happens to be the leader of the MDds forum and is also a member of the Mav forum, so if she has a problem with it, we can remove it.


Hey Mikael,

I’m not sure why they were so fussed about posting the info as long as the original reference was given and as long as you are given the credit for coming up with the Qs (great Qs btw). It sure is very important information to know because MDDS, MAV and MD all seem to blur into each other for many people.

I think it would be good to add those Qs somewhere here as a permanent fixture if you/they are in agreement giving you and the MDDS forum credit of course. I certainly wouldn’t mind if they used our top 10 lists over there in case a MAV sufferer ended up there first.

Let me know what you think … Scott :slight_smile:

I think there’s been some misunderstanding; I personally don’t mind at all, it was just that I said it would only be for the mdds site when I emailed the questions, so this was the agreement on the drs actually answering them in the first place. Since I am very thankful for their replies, I don’t like the idea of not doing just what was “agreed upon”, however it was not as if they specifically asked for this either (I just wrote that it only was for the mdds page), so perhaps they don’t mind either.

Are these questions to be found at the foundations webpage or at the “private” mdds support page?

And yes, they are good questions lol :smiley:

Mikael - I reckon that had he been asked, that nice Dr Chi would only have suggested publication restrictions in an effort to not have the information end up anywhere and everywhere and therefore risk being taken out of context or misunderstood.

I have been cautioned against doing my own “research” on the internet by a couple of doctors for that very reason - you can come across something that sounds just like your own symptoms and scares the living shit out of you. Especially for weird and wonky conditions like migraine and MdDS which present as very similar to things like MS, stroke etc. There is a reason we go to actual (rather than cyber) doctors instead of diagnosing ourselves over the internet and then writing our own prescriptions. Two words - “not qualified”. Imagine if we could write our own prescriptions, there’d be a world shortage of Valium!

Having said all that, I think Jen has re-published these questions responsibly, appropriately and absolutely in keeping with the spirit of the original caveats. This is a well monitored and thoughtful forum about a condition with lots of similarities with and cross overs to other conditions like MdDS.

In short - no harm done, no hurt feelings (I hope!).


Hi All.
Really glad these questions were posted here.
So I have MAV…I take Nortriptyline and am now almost normal and much much better.
I the past …before I got dizzy every day I used to get really sick and weird after very long car journeys, as long as 10 years ago when I had no other problems at all…and increasingly after air trips both short and long …either right after, or a day or two afterwards.
Then I started to get dizzy gradually for a year and a half, increasing most days.
Last year after my flight to LA I got very ill and dizzy and was stuck into a constant dizzy cycle that has taken me a year to get out of…I had been on off dizzy before leaving, but the trip locked me in.

Now I have to go to LA again, the first long trip for over a year…is there anything I can do extra to avoid this all hitting again, if it is MDD as well as MAV ? Does this mean I have MDD as well as MAV ? Is this possible? If it is MDD will the Nortri protect me or is it totally irrelevant ?

Any help would be really appreciated.

Thank you


Penny, I’m glad you asked the question because that’s what I want to know, too. In essence, how do you separate MDD from MAV and how do you prevent both? I’ve heard of nortriptyline helping MAV (actually, I’ve heard of its precursor form, amitriptyline, helping MAV), so I think you are on the right track there, regardless of the cause. I’ve also heard of people taking clonazepam to prevent MDD recurrences, but I don’t know to what effect, if any. Perhaps Mikael or others who have been on the MDD forum can elaborate? Completely understand your fears as a recent 2-hour plane flight, which wasn’t even bumpy, sent me right back to hell (not that I was in heaven to begin with, but at least I was functioning). “Locked in” feels about right. Even after 20 years and countless episodes triggered by motion (and sometimes not triggered by anything I can identify), I still get very scared especially this time, when a drug that always worked in the past has suddenly become utterly useless.

Hi all, I hope my original queries aren’t causing problems. I just hoped to engage in a dialog about some very real fears I have in light of current exacerbation (I say exacerbation because in the 20 years I’ve had MAV, I’ve never been truly still). Also hoping this discourse will help others similarly situated - although, are there any like me who are still in such bad shape after 20 years? I can safely say that on whole, while I’ve had periods of better functioning, I’m much worse now than original onset of sx, as drugs become increasingly ineffective. I’m coming up on age 30, which brings me to my next question: I browsed through your stories and it seems for many women it hit in their 30s, not when they were 10/11??! (Actually, it happened even earlier than that, but I say 10 because that is when I started feeling badly enough to say something and to see a doctor.) Thanks.

Hi Penny,
Many MDds’ers try benzos for air travel, it’s supposed to stop the brain from adapting to the motion.
I’ve used air ear plugs as well, for air pressure.
Others use decongestants days before they leave, to keep the ear’s nose and throat clear.
Serendipity, My mav / dizziness started a 29, but I had silent migraine from about 5.

jen from oz :smiley:

Jen, do you know to what effect, if any, benzos aid in preventing MDD? Do they usually work? Just wondering, as I tried that for my last air travel which triggered the current exacerbation, but maybe I didn’t take enough (.125mg clonazepam 3-4 hours prior to travel and another .125mg as we were landing). Thanks again.

Sorry S,
it’s a bit of a hit or miss really, many MDds’ers wont take the risk of travel.

You would be best off joining the Mdds support site , they are really helpfull group.

scroll to the bottom of the page , see to the right side where is says Informational brochure , it says support site.

— Begin quote from “serendipity”

Jen, do you know to what effect, if any, benzos aid in preventing MDD? Do they usually work? Just wondering, as I tried that for my last air travel which triggered the current exacerbation, but maybe I didn’t take enough (.125mg clonazepam 3-4 hours prior to travel and another .125mg as we were landing). Thanks again.

— End quote

I took 30mg of oxazepam prior to flying recently, and was entirely fine (I took 15mg two hours before, another 10mg one hour before and another 5mg just as I boarded the plane, which I had under my tongue for faster uptake).

Thank you, Jen and Mikael. I’ll probably ask for membership to that site eventually, but not at the moment…kind of don’t want to admit how bad travel made me again. Mikael, I used the benzo conversion chart and I guess my .125 mg clonazepam 4 hours prior wasn’t enough. I don’t think the second .125mg worked fast enough because I was already feeling the dizzies, up/down wavelike G-forces on the landing plane by the time I popped another.

here’s something from VEDA … pubF11.pdf

jen from oz

Hi Jen,

Good find. Shame they missed one of the MAIN causes of dizziness in their table – MAV. :roll:

One day it will be recognised across the board.


Same old story Scott.
here is the site, … graine.php
There’s a WHOLE page dedicated to Migraine, lol… :?
seems as usual we are in the too hard basket.


We are a pretty difficult lot. Does anyone know why we don’t respond to vasodilators? Why are so many of us chronic rather than episodic? If you “let” chronic go on too long, does it become permanent? Should I start a separate thread?

Thanks for your many finds, Jen, and thanks to everyone else who replied with info/advice. I’m back to “collecting” dizzy articles.