I was recently informed of the existence of MsSD, and the more I contemplate my symptoms, the more I suspect this may actually be what I have. I’m honestly not sure. No matter what I eat or when I eat it, my symptoms are 24/7, and at the same level of intensity. I’m actually beginning to suspect I have MsSD because the sense of movement I feel is absolutely relentless no matter what I do, and only lets up in the slightest when I’m moving in the car. It seems a lot of people with MAV are dizzy and/or off-balance, but they usually don’t have this absolutely constant sense of movement, whether laying down, standing, or sitting, and the fact that it lets up a little when I’m in a car seems to be a giveaway that I’m actually a MsSD case…
MDDS SYMPTOMS
Persistent, illusionary sensation of motion such as:
•Rocking sensation
•Difficulty concentrating
•Swaying
•Bouncing/Shimmering Vision
•Rolling sensation
•Sensitivity to light and/or sound
•Lurching
•Nausea
•Bobbing sensation
•Feeling disoriented
•Headaches
•Floating
•Intolerance of busy patterns
•Imbalance
•Confusion
•Ataxia - a staggering gait
•Ear pain and/or fullness
•Fatigue
•Anxiety
•Tinnitus (in one or both ears)
•Depression
Symptoms can vary in intensity from day to day and even throughout the day. Many times the reason for these changes cannot be clearly identified. Many report increased symptoms toward the end of the day.
This is most likely caused by an increase in stress and fatigue. Although common triggers have not been clinically identified, some report an increased rocking sensation with stress, fatigue, illness, dark rooms, bright lights, busy patterns, shopping in supermarkets and grocery stores, household chores like ironing, hovering, working with computers and walking in crowds. For some the symptoms decrease over time, but not always.
It has also been reported that symptoms seem to go temporarily unnoticed or seem to “disappear” during car rides, short train travel or other steady motion experiences. Additionally, some sufferers have experienced reoccurrences triggered by events such as subsequent cruises, air travel, upper respiratory infections and other motion experiences
Symptoms not typically associated with MdDS include:
•Rotational/spinning vertigo
•Double vision
•Nystagmus
To me it sounds very similar to MAV but i think MDDS can only be diagnosed by exlclusion, basically you should treat it as MAV until you have trialed a few meds, if the meds dont work then you probably do have MDDS
MDDS can normally go away over time without any specific treatment
MDDS without pro longed travel is rare I wouldn’t work yourself up about that diagnosis.
I agree with Blondie. Unless you had been exposed to unusual passive motion (cruise, boat) a day or two prior to when symptoms started, I would look elsewhere for a diagnosis. Just my own opinion, but I believe unless it’s initially triggered by passive motion, the MdDS diagnosis is meaningless.
I see. I did go on a two hour boat ride in August, and I’m having a hard time wondering how severe my wobbliness/unsteadiness/sense-of-motion was prior to that. I’ve had issues with dizziness and I know I was almost certainly a BIT wobbly and unstable prior to the boat ride - in fact, I’m sure of it - but I’m wondering if maybe, because I already had balance and dizziness issues, that brief boat ride exasperated my symptoms or triggered MdDS…
Just my gut feeling, Nick, but I don’t think the boat ride had anything to do with how you are now. If you were symptomatic for many months prior to the boat, I would look elsewhere for a diagnosis. Didn’t you say in a previous post that you have visual auras? I’m certainly not a doctor, but you sure sound like a person with migraines to me.
I think we are all individuals here. When my problems first started, I was classic MdDS in that I felt great while riding in a car but way worse once the car stopped. As the months passed, I felt great in the car, except when it was a windy day and the car shook ever so slightly while driving. When I was at my worst, I didn’t get as much relief in the car as I did previously.
Does that mean I had MdDS in the beginning and then only on non-windy days? And then on some days (my worst dizzy days) later on my MdDS disappeared only to reappear again later on when I did had complete relief in the car? To me that is ridiculous. I think many people can experience relief in passive motion no matter the cause of their dizziness. I think the rocking/bobbing sensation is still there, but just masked by the normal motion of the car. “Normal” people can get initially seasick on a boat because they are receiving unexpected, different input from the eyes, ankles, legs, neck (vestibular proprioceptors). That confuses the brain with the end result being feeling sick. When a rocking/bobbing dizzy person rides in the car, the brain EXPECTS to feel those sensations so there is no confusion and no sick symptoms are felt, thus a resolution of the abnormal rocking/bobbing sensations.
Have a feeling some of the long timers here may have MdDS with a migraine variant.
i have all those mdds symptoms, but i have been diagnosed with migraine.
They are effectively the same symptoms - so i would stick at MAV and work on trialling your meds x
For what it is worth, my MAV symptoms almost 100% mimic MdDS (with the constant rocking that won’t stop), with the one difference being that they are variable and tend to go away after a good nights sleep (which matches with migraine that also fades after sleep). If I were stuck in a chronic migraine or cluster migraine state, it would probably look like I had MdDS, because I have no headaches at all, just vestibular symptoms that seem exactly like MdDS. However when I am able to suppress all migraine activity, my symptoms fade to pretty much zero.
I know you are saying your symptoms are persistent, but it IS possible that you are in a chronic migraine state. I definitely wouldn’t rule out MAV just because the symptoms look like MdDS.
I’ve just got back from a two week holiday in Turkey - the first week was cruising on a Gulet boat.
The first night off the boat at the end of the first week my friend noted that he felt like he was still on the boat, I said I felt the same thing but just thought it was my MAV playing up. The sensation was very similar (but milder, maybe only a quarter as bad) as my MAV, though only the rocking sensation and not any of the spinning that I sometimes used to get. This mild MdDs lasted about 2 days before I returned to baseline, but oddly my healthy friend took 3 or 4 days to feel normal again.
Also I came very close to a full on MAV attack that first night off the boat, partly due to the rocking sensation, partly due to a large cocktail I drank but mostly due to walking down a street where night clubs were blasting “music” out. I really do find loud/unpleasant noise or music my biggest trigger at the moment.