. . . and is their any hope for improvement, ever?
Mine is bad, the slightest movement can set me off to being “carsick” for hours. If I’m at my desk at work and someone comes up behind me and puts their hand on my chair, that slight jolting will make me so carsick, I often need meclizine to help me get through the day after just that little bit. Watching clouds move, trees sway in the breeze, babbling brooks, they are all beautiful and calming but I can’t bear to look at them. I cannot be a passenger in a car, never, ever, unless medicated to the point where I am a zombie. Getting my hair cut is torture because just 1/4 of a turn in the chair makes me carsick. The dentist trip requires valium as well as meclizine. Unexpected movements out of the corner of my eye - I’m a goner. I cannot be in the same room with someone in a rocking chair, I cannot talk with people who have to rock when they talk, I cannot turn my head to one side but instead have to turn my entire upper body.
It is so disabling and people just don’t understand. Is this part of MAV or is it something more sinister? Is there any help for this other than being medicated 24/7? Please no vestibular rehab, tried it for 15 seconds and that was it, I was sick for the rest of the day.
Does everyone with MAV feel this bad with the slightest motion or is it just some of us?
Yes, I have this too. Standing in line behind someone swaying about makes me fall over. I’ve had some relief with vestibular therapy. We did lots of exercises moving my eyes and/or head while watching a target. I’m almost done with therapy now and they’ve got me bouncing on a small trampoline while moving my eyes or head and I tolerate it pretty well. It seems to translate into handling real world situations like the ones you mention, but I still have a hard time in cars. I’m almost always the driver and I still get motion sick while driving. I take Bonine (meclazine) and that helps a little.
mine used to be pretty bad like bending down, getting in the car, rolling over in bed, etc. it never stopped me from doing things but it made them way more uncomfortable- i take nortriptyline and it really helps with this symptom- not 100% but a big difference for me.
Mine used to be really bad, but Nortriptyline and diet changes have really helped. Still hate going to theatres/stadiums with attached seats though, where if someone moves along the row you get jiggled too. I try and sit in short rows on the end!
I’m more sensitive to visual motion rather than motion itself.
A chap at work who sits opposite me often rocks his foot/leg when concentrating and I have to move my head to hide it behind my monitor if I catch him out of the corner of my eye.
Thanks for your responses. I’m glad others can relate to this horrid feeling (not meaning I’m glad someone else feels as miserable as I do, just that I’m glad someone understands)
I can so much relate to what you have said such as hiding behind a monitor so you don’t have to watch someone move, sitting in an attached seat that gets juggled.
Are “normal” people ever bothered by movement? Once in awhile I’ll hear someone say something like they can’t read in a car or they get that awful feeling when at a stop light the car next to them rolls and they think they are moving, but I never come across anyone who is bothered by as much as I am. I so wish I didn’t have to feel this way.
Sounds like nortriptyine has helped quite a bit for some of you. I tried it for a month but had the very unusual side effect of horrible insomnia, I was sleeping about 2-4 hours a night. I don’t want to go through that again.
Sarahl, I’m glad to hear that vestibular therpy has helped. I wish I could do that but it really makes me feel sick just to think about it. Is this something you will have to keep up on your own after you are through with therapy in order to continue feeling well? Is one allowed to take meclizine before vestibular rehab? Maybe I could do it if I had enough meclizine in me.
Diet, I believe has helped me somewhat. I’m not as bad as I used to be but the last couple of weeks for some reason I have been feeling very off and am bothered by most all movement. I hope it’s just a temporary thing, maybe something in the air.
I think you could take a meclizine before starting if you needed to in order to get started. You just wouldn’t want to take it continually. I’m not sure what I’ll need to do after I stop therapy. I’ve gone down from 3 visits a week to 2 and that’s going ok. Most of the exercises could be replicated at home so I might do that on my own if I feel like I need it. I’m also planning to try yoga or other balance exercise after I stop therapy. The PT requested that I not do those things while I’m in therapy so he can keep track of the effectiveness of what we’re doing in the therapy sessions.
I think the key is finding a good therapist who understands and appreciates that you need to go slowly. I was very clear with mine that if we went too fast I’d probably end up having to stop therapy because my symptoms get so bad. I know I’ve been going for months longer than the typical vestibular patient but that’s because we’ve had to go so slowly.
Ugh! I feel for you! Just reading your post made me a little queazy. When this Vestibular thing surfaced, I was at my computer working and still today, that is my worst trigger for a MAV or just outright cyber sickness. It is worse on LED iMac, than my LCD Macbook, which is less likely to make me hurl. Watching cars drive by my house from my front window or seeing a large shadow move across a wall can also induce nausea. I’ve noticed that the faster I go through life, the less I notice. When I ride my bike slowly and have to navigate through a narrow pathway, looking at the pavement makes me feel like I’m going to fall off my bike, so I hyperspeed through it and high five myself later:). I started out with throwing a tennis ball high in the air and only looking at the sky and the ball to catch, then I would catch grapes with my mouth, sounds crazy I know, but I needed to do something different! It helped, well except for the Computer induced sickness.