there are many myths about mdds, and a lot of them are being expressed here. However, I also think basing a diagnosis solely on the fact that a person happens to feel better in (passive) motion, is a bit, well REALLY RETARDED hah. I sent luke some more info on this Scott…
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I just don’t buy MDDS going completely and them coming back. I also don’t buy it coming on, in the first instance, a long time after you’ve travelled.
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Well you should, because it is very unlikely that once you’ve had it, you won’t react the same to say another cruise. The typical way of mdds is that it lasts for a couple of months, then goes away until being retriggered by another motion-event (usually a cruise, but also fairly common with airplanes, cars etc.); it’s much more common to have many episodes if the person also has migraines, which in itself seems to being able to make a person relapse (you have symptoms for a couple of months, go symptomfree for a while but get hit with a killermigraine, and back you are at square 1).
I know people who had one episode after a cruise, lasting for 6 months, then went “into remission” for 35 years(!), travelling all over the world before being struck by lightning again, this time for 3,5 years and counting… How this can be explained I really don’t know.
Most docs would say that symptoms would have to start within 2-3 days of the motion-event. Dr slater (expert) calls the rest “mdds-like syndrome” and there is a very strong correlation with migraine there. Treatment for mdds is pretty much the same as for mav, perhaps with the exception of verapamil. Typically it’s klonopin or amitriptyline that seems to work, but I’ve seen people being “cured” (as long as they stay on the drug) by everything from a combo of topamax and paxil to verapamil to effexor… Sounds familiar?
I don’t buy that VN people would feel better in a car, no way! I might be wrong but this sounds totally against how VN works. I don’t think the more normal mav-cases (episodic only happening ocasionally) feel better in motion at all either, but this is obviously the case for some of us here. However, I highly doubt that the “story of chronic 24/7 mav” is written anywhere near its entirety; I think the bond between migraine and 24/7 dizziness is much more complex than currently expressed. The fact that most here have such trouble finding meds that work, even though most of these supposedly work 80% of the time, just doesn’t add up to me… This has of course NOTHING to do with mdds, I just don’t think the docs really know what the heck is going on, and just because you respond to a migrainemed doesn’t mean its a clearcut migraine-problem,in the same way as just because you respond to an antidepressant, doesn’t mean it’s a depressive disorder…
I asked if anyone wanted to share their typical “mdds” symptoms with us here, and this is the reply I’ve gotten thus far:
Hi! My MdDS is classic motion-event triggered (now 5 1/2 months ago) by a cruise. I feel a back and forth rocking motion, and (to a lesser degree) an up and down bobbing motion (no spinning, ever), and these are usually an exaggeration of actual motion, though I can feel both when I’m standing still and it’s often to the pace of my heartbeat (so faster if my pulse is faster) I developed a very severe headache near the crown of my head during the early weeks of this which is treated with a migraine medication and is now under control, but the headache DID NOT predate or start at the very same time as the sensation of motion. My symptoms get worse with dropping barometric pressure, like thunderstorms, or when it’s dark (since I’m using my eyes to balance), or when I have to look straight down and walk. I feel better riding in a car, but worse when I get out of the car for a while (not that long). I do not try going on boats of any size or kind, even briefly, at this point. Sitting in a bathtub can feel like sitting in a small boat in a stormy sea, and being under a ceiling fan is like being in a blender! Anything that even slightly pushes your body around, like wind, makes you feel the motion much more intensely.
I have no visual issues, myself, and can work on a computer just fine and always have been able to. During the early weeks I had severe cognitive issues (word loss, memory problems, stuttering), but am getting over that, but still have issues if I have to try to walk and lecture or do something complicated at the same time (so trying to balance is still interefering with higher brain functions even if I’m not feeling like it’s particularly hard to balance at the moment). I have trouble regaining my balance if I start to fall over.
During the early months, I felt like I was on a yo-yo string, like gravity itself was effected, or like I was walking on the moon or then weighted down heavily. At times, I felt one side of my body was being pulled to the ground. I haven’t had that in recent months, but I understand that’s common, too.
I had severe neck pain and back of the head pain from muscle cramps and mid-pain and intrascapular pain from trying to balance. Those are mostly gone now, treated with stretching, chiropractic and exercise.
I had never been diagnosed with migraines prior to MdDS, and as I said, my motion sensation started before the headaches came on. Those developed later, and became more severe as my symptoms became more intense and my muscle spasms in general became a pain issue.
I was very fatigued during the early months from the struggle to balance, but am getting past that now though rest is still important and my symptoms can get worse if I really let myself get run down.
I think my symptoms are pretty standard from reading other peoples’ posts. Good luck to your friend!
Gina
