I have just done a 30 mile mountain bike ride climbing some extremely hilly terrain (1000m) for the past 5 hours and as with any motion I felt great, just the same as when I am on a bus or train or car etc…
Why would migraine allow me to feel so good with big altitude changes and extreme physical exertion… Then as soon as I am back on my feet I feel crap again… It just doesn’t make sense
I get the same exact way. This is true of any sort of motion sickness: when you’re in control of the motion (driving, biking) your symptoms back down. When you stop and try a new sort of motion (getting off your bike, or walking after driving) your brain recognizes the change. My only guess is that your brain can anticipate your next move based on your steering, which is better tolerated than without.
Annoying to say the least eh? :roll:
— Begin quote from “Juliemarie”
I get the same exact way. This is true of any sort of motion sickness: when you’re in control of the motion (driving, biking) your symptoms back down. When you stop and try a new sort of motion (getting off your bike, or walking after driving) your brain recognizes the change. My only guess is that your brain can anticipate your next move based on your steering, which is better tolerated than without.
Annoying to say the least eh? :roll:
— End quote
Do you mean that because I am steering the bike my mind is occupied? If this is the case then being a passenger in the car wouldn’t bring relief… So not sure about that… Maybe I totally misunderstood you 
It actually isn’t that odd if you break it down logically.
The first thing you have to understand is that this isn’t necessarily motion sickness. You’re talking about a disorder (MDDS or MAV that generates MDDS-like symptoms) that makes you feel like you are in motion when you are not. So when you ARE in motion, you don’t notice the disorder. Or you don’t notice it as much. The disorder isn’t preventing you from feeling REAL motion. So when you are actually in motion, the real sensations of motion are much stronger than the illusion of motion the disorder is generating and so you don’t notice the disorder.
it is the same thing with tinnitus in a shower. Just because the shower drowns out the tinnitus and makes it so that you can’t hear it doesn’t mean the tinnitus has gone away. You just can’t hear it over the louder noise of the shower.
Of course you’ve said you feel the best when you lie down, and that is when the illusion of motion from MDDS-type symptoms should theoretically be the most noticable, so I’m not sure how that fits in.
— Begin quote from “JamieH”
It actually isn’t that odd if you break it down logically.
The first thing you have to understand is that this isn’t necessarily motion sickness. You’re talking about a disorder (MDDS or MAV that generates MDDS-like symptoms) that makes you feel like you are in motion when you are not. So when you ARE in motion, you don’t notice the disorder. Or you don’t notice it as much. The disorder isn’t preventing you from feeling REAL motion. So when you are actually in motion, the real sensations of motion are much stronger than the illusion of motion the disorder is generating and so you don’t notice the disorder.
it is the same thing with tinnitus in a shower. Just because the shower drowns out the tinnitus and makes it so that you can’t hear it doesn’t mean the tinnitus has gone away. You just can’t hear it over the louder noise of the shower.
Of course you’ve said you feel the best when you lie down, and that is when the illusion of motion from MDDS-type symptoms should theoretically be the most noticable, so I’m not sure how that fits in.
— End quote
Thanks for your well thought out and structured response Jamie…
The laying down but is the exception to the rule, as you mention… The only thing I can think of…
When standing, walking… The surface area of contact with the ground is very small, only the size of your feet. Which means your balance system has to work much harder to make sure you do not fall, therefore you experience the unbalanced feeling most at this stage.
When sitting, the feeling is not so bad, you have the area of your feet touching the ground, your legs and back supported by the chair…
When laying down, there is maximum surface area meaning the body does not have to work hard at all to keep balance.
When in motion, your theory comes into play…
The above would also make sense, when I have the support of a trolley in the supermarket, compared to walking without.
I am just thinking out loud here
Jamie did a much better job making sense of it. You are right, my theory doesn’t hold true for the passenger in a car. I actually don’t feel well being a passenger. I would assume it is because my eyes are all over the place contributing to the visual symptoms. If I’m going to be a car, I prefer to be the driver, unless of course it is an above average spinny day
I think there are people having pretty different symptoms from this stuff. I think some people get spinny/dizzy/more vertigo-like symptoms, while other people having rocking/illusion of motion/MDDS-like stuff. Some unfortunate folks probably get a mixture of both.
My theory is that the people with mostly the rocking sensation symptoms probably aren’t feeling the motion sickness stuff that the spinny/dizzy folks are.
Jamie - great explanations. I have been wondering why feel better in car for ages and I agree with you thoughts
Yes, Jamie, that was great. Oddly, I rock like crazy when I walk on stable ground, but the few times I tried a treadmill I was asymptomatic. And then when I got off, things got sooooo… rocky that I will never walk on a treadmill again. A stationary bike helps my symptoms a bit, and does not increase my rocking too much when I get off. Do you think us folks that rock and are fine in motion have MDDS? I know that Dr. Hain’s partner (I think his name is Dr. Cherichi?) said that the only vestibular disorder where motion stops the dizzines is MDDS. Also a few of my local docs have told me this as well.
Thanks!
Christine
Christine, it is possible. However I am 100% convinced that I have MAV or some migraine-variant imbalance disorder and not MddS, yet I believe my MAV symptoms manifest almost exactly as MddS would. When I am symptomatic my main symptom is the rocking sensation, I feel better in motion and I feel the worst when I’m still (absolute worst is lying down and I will sometimes even get heart palpitations when things are really bad, though I haven’t had those in a while now).
So why am I so sure I don’ t have MddS even though my symptoms mimmick MddS?
So since my main symptom is the MddS-like rocking, yet it is pretty clear that I don’t have MddS, teh fact that someone has the rocking sensation really doesn’t mean anything. It would appear that the MddS-rocking can be migraine-related, but it doesn’t have to be. I know I’m not the only person even on this board to get relief from the rocking from Topamax. So if you’re experiencing the rocking sensation it COULD be MddS but if there is a good reason to suspect migraine that is a viable reason for it as well.
All of this is just based on what has happened to me personally–I have no idea how typical or bizarre my personal case might be.
This is from
http://www.mddsfoundation.org/newsletter/MdDS_Newsletter_Vol27_April2008.pdf
Given the above, it should be clear that all that
rocks and sways is not MdDS and all rocking and
swaying in migraine sufferers is not MdDS. If your
symptoms started after travel and fit the description above for MdDS, it
is likely that you have MdDS regardless of whether you have migraine or
not. If your symptoms began spontaneously, it is probably MAV but
perhaps we need a special classification for MAV that is completely
identical to MdDS. Non-classical MdDS or MdDS-like syndrome is
offered as possible diagnostic terms for future consideration.
I have developed an unhealthy obsession with MAV and MDDS for months now, and I still have no peace of mind. I’m done with doctors, they are done with me, but most of them weren’t even familiar with either syndrome. Actually I did get stuck with one doc who thought you had to have a personal history of migraine headaches to have MAV, so he stamped the MDDS diagnosis on me. :-/
There really needs to be clearer criteria in distinguishing among all vestibular disorders, but alas, the lines are too blurred, so many of us don’t’ get diagnosed and treated correctly.
I GUESS the biggest clues are: if someone responds to MAV based treatment and trigger avoidance, it’s probably MAV. If symptoms started shortly after a motion experience, probably MDDS.
Heck, I’ve read on forums where some people w/ inner ear problems feel better in motion because the actual motion is canceling out whatever their phantom motion may consist of (be it rocking, spinning, disequilibrium, etc). Kinda like what Jamie said about the shower/tinnitus thing. Thanks for posting that link Jamie!
thanks for the article Jamie
so far I do fit the MDDS symptoms. My caloric and hearing tests were normal, no nystagmus also with other tests.
I did not have a spinning attack during having this condition, the symptoms slowly increased over a matter of a couple of days.
Prior to the symptoms starting I had been on a flight 2 days before, followed by a train.
Until i try medication, i guess MDDS can not be ruled out in this case
@ Richy… yes, based on your response to topamax and your other symptoms, it does not sound like you have MDDS.
@Jamie, thanks so much for posting. Now I do understand why my docs feel the rocking part of my MAV is Mdds driven. Or maybe I just have Mdds and also suffer from Migraine. My ENG was normal, my symptoms are rather constant to some degree and never go away. Usually if I am rested and at a low hormonal point in my cycle the symptoms are just a teeny bit lessened, but nonetheless there. And probably the biggest clue may be my non response to many migraine meds. In fact as I have written in other posts, my head symptoms have improved since being completely off them. My Mdds, if that is what I have, was spontaneous.
This discussion has been very helpful and I hope to share it with my doc at our next appointment. I’m still not 100% convinced of anything, but at least I feel that I understand just a little bit more.
Christine
— Begin quote from “rockergrl”
@ Richy… yes, based on your response to topamax and your other symptoms, it does not sound like you have MDDS.
Christine
— End quote
Hi Christine,
did you mix your words up there? i’m confused :lol:
i havent taken any meds yet
oooppsss… lol… I meant Jamie! Sorry for the mix-up!!!
I too constantly worry about MdDS. My situation is complicated as I had spinning vertigo for a while, had a 4 hour trip and then felt rocking about a week later. I’ve been diagnosed with both actually but I have a hard time truly believing it’s really MdDS. Had I not had any vertigo or dysequlibrium before the flight then I’d be more convinced. I also have a very strong familial history of migraines and vertigo.
I have come to the conclusion that the title does not matter as much as the cure. Obviously BB’s and L-Chanel Calcium blockers don’t help MdDS. But from what I’ve seen on this site the don’t really help a whole lot of MAV either. I think they may help headaches more than vertigo. So we are then left with SSRI’s, Tricyclics and Anti-Convulsants. If they seem to help with both disorders I don’t think worrying about the title is as important as the treatment.
Another 100km bike ride yesterday… Very intense and felt great whilst doing it…
It’s so funny that I can cope when doing intense exercise but hate standing still lol
Nothing makes much sense to me with this disease.
I’ve been having a bit of a crash recently, after showing signs of doing well on Gabapentin and Topamax - been feeling heavy headed, dizzy, false motion, veering, leaning, etc, etc. But I managed to go Go-Karting with the company I work for the other night, and coped just fine!! I don’t get it…? And then as soon as we had finished and went to a restaurant for something to eat, I felt terrible again - like the chair was on a bungee, and I was falling, dizzy, etc, etc…I just don’t understand it…
Tony.