Mav and passive motion

I just wondered if any mavers feel relief while in passive motion ( for example riding in a car). From what I’ve read the opposite is more common but it would be good to know if the other way around also occurs, as I get relief from many of my “problems” when doing so.

/ Mikael - mdds(?)

Hi and welcome - I believe you’re the second swede around here, me being the only(?) other one. :smiley:

It does seem more common in MdDS but I’ve heard MAVers say the same thing. As for myself, I absolutely can’t tolerate it (motion, or cars) at all - no better during nor after (and not before, for that matter, but that’s another issue), but the extreme opposite.

/Tran

Hello,

I have a diagnosis of MAV and I feel better while I’m driving, but not as a passenger. Although, like Tran says, before treatment, I couldn’t tolerate any movement at all without drugging myself with Valium. I still don’t drive much because when I quit i pay a big price in symptoms. When I’m driving and come to a stop light, i stop some 20 feet back so I can keep the car moving the entire time, so as not to feel my symptoms.

I also feel better when walking, moving around, cooking. But again, when i get quiet, i get hit with symptoms.

Earl talks about this, but I’ll let him speak for himself.

Julie

I, too, believe I generally have less difficulty when I’m moving, although on really bad days, it doesn’t seem to matter much. If I’m too sedentary, though, I suffer much more. Until I read your post, I thought it was just my imagination. I’ve never really been diagnosed with MAV. In fact, I’ve been given a diagnosis of atypical Meniere’s. I just happen to think I’ve been misdiagnosed, because my symptoms are so bizarre & unlike anyone I have ever talked to or read about who has Meniere’s. They really aren’t too much like anyone who has MAV either, but more similar to that than anything else.

Frequently comming to a stop after motion is a trigger for me. Running up a flight of stairs and then immediately sitting down, driving and comming to a stop at a stop light, etc. My theory is that my inner ear is hypersensitve due to the MAV (or whatever the heck this is) and that vestibular stimulation must get my inner ear “worked up” and producing a false signal - I think of it as a sort of “vestibular tinnitus”. But while the motion is going on I don’t notice it 'cus it’s “drowned out” by the actual motion. Again to use the tinnitus analogy, it’s like not noticing tinnitus when you are in a noisy room. But then the motion stops and I’m left with on ear producing this false signal and the other not and I get dizzy. This is of course, just my theory based on trying to figure this mess out for three years.

Chaz

Tranquility, bor du i stockholm? I så fall, vem gav dig diagnos? Jag ska äntligen se än önh-läkare iaf (bara varit på vårdcentral osv tidigare), men det lär knappast hjälpa så lär behöva bli vidareskickad. Hur gammal är du förresten? Tar du någon medicin och hjälper den i så fall?

thanks for answers, I can relate to feeling worse after motion, especially after I rode my bike to town!
I wonder how the heck one is supposed to know whether they have mav or mdds? They seem so similar sometimes, or maybe sometimes people are misdiagnosed with one when it’s really the other (I know mddsers who recovered from veraprimil). I recently moved out and ate noodles (cheap!) but I seemed to feel worse afterwards so I stopped. Thought it had to do with them being salty or something but I’ve just realised they have something called tmj, you all know that I’m sure…

What I’m especially curious about is the beating sensation that goes along the heartbeat. It’s a pulsative feeling in my muscles and ears (can be annoying when I’m trying to sleep) which actually makes my muscles tremble by each beating though it’s very slight. Does anyone here get these or similar symptoms? In all honesty I’m scared that the longer before I find out what’s wrong with me the less likely I am to recover (read about something called microvascular compression which seems very scary)…

Thanks for any answers. This sure aint no fun.

/ Mikael

When i am driving a car… the motion is definitely less felt…that is if i’ve taken the daily medication for MAV. I’m not going take any chances driving a car w/out medication. It would be too overwhelming.

Joe

The motion, is it there, what to do, and how do I handle it? Yes, it’s there, in day light when I’m driving sunglasses do wonders, wrap arounds work best. The glasses seem to block out the extra lighting that helps trigger me. I’ve also found that if I feel or see someone coming up on the side of me while I’m sitting still and can close my eyes for that moment and the motion will pass. I’m not to fond of night driving, try to limit it to short drives.

I’ve talked with Julie, when I’m have not so good of days I find myself walking around like I have a stiff neck. I tend to move my shoulders, or whole body vs turning my head and feeling dizzy. I have also found that swimming with a snorkel system is a great way to exercise even when I’m feeling bad. It seems that once you get your head in the water and start swimming, everything is flat and you have hardly any head movement at all. When you are swimming this way you are looking down and it is as if you feel no movement until you get to each end to turn around. I have found for me, after about 30 mins. of swimming the next 2-4 hours of day or evening are my best, I think the endorphins help kick in. Hope this helps. Believe

I definitely feel better while in a moving vehicle. I then feel temporarily worse when the motion stops.

— Begin quote from “Chaz”

My theory is that my inner ear is hypersensitve due to the MAV (or whatever the heck this is) and that vestibular stimulation must get my inner ear “worked up” and producing a false signal - I think of it as a sort of “vestibular tinnitus”. But while the motion is going on I don’t notice it 'cus it’s “drowned out” by the actual motion. Again to use the tinnitus analogy, it’s like not noticing tinnitus when you are in a noisy room. But then the motion stops and I’m left with on ear producing this false signal and the other not and I get dizzy. This is of course, just my theory based on trying to figure this mess out for three years.

Chaz

— End quote

I like your theory, it makes total sense to me. It’s always nice to have something that makes sense to hang onto, isn’t it?
Thanks for sharing that.

Julie

OK while the car is moving, bad when it stops. OK riding a bike, bad when I stop. Worse thing in the car, is when it comes to a T junction and the cars are going past the other way, same as watching a train go by, makes me dizzy.

Christine

Before I started the meds, I used to experience what I called motion sensitivity full time. Simply put, I was sensitive to motion. I could be on the sidewalk and a truck would drive by and I could swear that the ground had just buckled. Someone could give me a gentle push, and it would feel like a shove. At times I couldn’t tell when I stopped moving, at other times, I couldn’t tell when I started moving. Sitting in a chair that rocks was one of the worst experiences for me when one of my sons would bump into while wrestling with each other. I would feel like I was thrown out of the chair and across the room.

Driving was another issue. I had to be the driver, or else sit with my eyes pointed down so that I couldn’t see the road and constantly keep talking, so that I could “try” to ignore the motion sickness.

Turning while walking is still bad for me as I don’t feel the turn correctly. It is either exagerated, and I lean into it more than I should and hit the corner with my shoulder, or I barely feel it, and over correct, walking myself right into the corner.

Oh, and I took an elevator ride once during an extremely stressful day. The elevator was going down and when it stopped, I didn’t. I haven’t rode an elevator since.

Brian

Brian,

You’ve always done such a good job describing your symptoms. I think that’s why, from the first day I read your story, my heart went out to you.

I know I have the same symptoms, but I wish you didn’t have to suffer so badly. (past, present or future)

You’ll write our book, okay?

Julie

:lol:

:smiley:

There you go again Brian!!

You think i’m not serious !!!

You KNOW you can do it!

Julie :wink:

one a these days, Brian, one a these days…

BANG! ZOOM!

:mrgreen:

— Begin quote from “Julie”

one a these days, Brian, one a these days…

BANG! ZOOM!

:mrgreen:

— End quote

That was last Friday, I did a lot of zooming into things, followed by a nice bang once I hit those things I zoomed into. I actually should have left work sooner than I did, but I had obligations to meet before I could leave “sick.” :mrgreen:

And I know your co-workers just say “there goes Brian again…”

:slight_smile:

— Begin quote from “Julie”

And I know your co-workers just say “there goes Brian again…”

:slight_smile:

— End quote

The ones that work directly with me, yes. :slight_smile:

Do you feel your symptoms constantly, or do you get periods of “normality”?