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How many are restricted in activities due to MAV

I am curious how many are restricted with your activities of a normal life due to MAV? Right now I am very restricted , i can not work, I do not go out much , but some …I really would just like to be able to lead a somewhat normal life.

As time goes on it gets more frustrating. I have some really good days and then bam right back to square one it seems. That is what is frustrating to me…two steps forward and one step back.

Completely homebound and more (no TV or games, or reading books, problems cooking, etc etc).
Mostly due to visual intolerance/motion sickness and nausea. Hoping for this to get better with a few (or more) changes to meds etc soon!

I work full time (not much choice there) but live in constant fear of having a vertigo attack, especially when out in public. I never eat out in restaurants or friends houses anymore. I don’t go to movies, in fact I don’t do anything much other than go to work. I can’t be a passenger in a car unless I am heavily sedated.

The constant motion sickness and the constant fear that I will go into a vertigo attack at any moment keeps me home much more than I would like.

My life has drastically improved since I got a proper diagnoses, and started the meds, but I still avoid things that will trigger me. I work full time (I am the only income provider in my household so I have to,) take night classes and do my best to take the kids to activities. I must stress that I avoid things that trigger me, I take my kids to football games but sit in the car. I go shopping, but at off hours. When I go over to my mothers, it is for short visits as she has hard wood floors, and the aucoustics just throw me out of whak. I don’t play with my kids the way I used to play with other peoples kids before this all set in, in other words no rough housing. I am not nearly as active as I used to be because I am usually in fear of another dizzy spell and not being able to get back to my car through all of the falling. When I do go out, I try to stay as close to my car as possible so that I can go home if necesary.

In short, I do what I can when I can, and I try to figure out work arounds when I can’t.

Brian,

It is interesting you mentioned the hardwood floors at your MOms, we just had our whole house remodeled last fall and we had hardwoods put in the whole house… Interesting…I wonder if that could be part of the triggers that I have not thought of.

— Begin quote from "Timeless"

Brian,

It is interesting you mentioned the hardwood floors at your MOms, we just had our whole house remodeled last fall and we had hardwoods put in the whole house… Interesting…I wonder if that could be part of the triggers that I have not thought of.

— End quote

This was something I figured out while I still a meniere’s diagnoses. There were a couple of stores in town that I could walk in feeling fine and 10 minutes later, just had to leave. Then my sister had her wedding reception in a small concrete hall, and I couldn’t spend more than about 5 minutes at a time in there. With a little help from my wife, we figured out that I was having problems with areas that had “hard acoustics.” Her dream job is to be a sound engineer in a major recording studio, but there aren’t any recording studies in our city so that’s not going to happen. Personally I break this down to the acoustics messing with my spacial perception (blind people do this to a great extent, so I figure most of us do to a lesser extent) and causing information overload from all of the little echoes that I get off of the hard walls and floors.

Without Topamax, If I walked more than 10feet in a row without stopping, I would feel like someone was violently shoving me in various directions. I would have to stop, get my bearings, and walk another 10 or so feet and start again. I was afraid to leave my house in fear of having an attack secondary from the 24/7 stuff. My attacks would put me on the ground wherever I am (not Miniere’s) and force me to stay there for 5-10 hours, or be carried/driven back to my bed for that period until the attack resolves. I would have attacks pretty much every day, so much of my day was in bed. I could barely turn my head because it would stir things up, but I could drive because there was no head-turning involved except at stop signs. I just turned very very slowly. No running, no sports, and i couldn’t go ANYWHERE without sunglasses due to the visual intolerance. Navigating a store or a shopping center was impossible.

On topamax, my only restrictions are really fast head movements, the kind that would be involved in sporting events like soccer, football, etc, no roller coasters, but I can go skiing, jet skiing, and I can jog and run again. I can rough house with the kids on the floor (but not get too crazy as they like to go upside down and then things get crazy lol) but I can’t go upside down or do anything like that. Not like I want to, but I just remember a time when I could do ANYTHING. I liked playing sports on the weekends and all that. But that’s still something that will trigger me. That’s why I say I’m at 85-90%, due to those triggers. BUT, I take trips, I haven’t had one of those valsalva-induced attacks since June, and I’m not afraid to go anywhere. I have no visual sensitivity anymore, and I only wear my sunglasses on my 85% days which are not as great as the 90% days. Overall, life is much much better. I also believe that my diet, sleep patterns and vitamin D therapy have a lot to do with my results as well. i’m just glad to be out of the crises. I was in the 24/7 stuff for more than 7 months. Month 7-11 is when the improvements started to really kick in, after 4 full months on Topamax. Thank GOD. Anyway, that’s how things are for me

Rich

Ever since MAV went chronic I’ve avoided restaurants, a major trigger for me but never exactly sure why. I used to think it was the lighting then maybe the foods (histamine, tyramine, MSG). Until I happened on this I’d never thought of acoustics. Maybe that’s why some people (definitely not me) are better outside than in. Personally I’ve no ear issues and it wasn’t until a recent loud music event in an adjacent field I’d ever noticed any correlation with continuous loud noise and MAV but … a new perspective maybe. Helen

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I also found this thread interesting regarding the hard wood flooring. We moved into a new home last year with 100% maple hardwoods and it drove me insane for about 6 months with the echoes. I placed scatter rugs and they made my anxiety worse since I worried I’d trip since walking upright wasn’t my strong suit at the time :joy: Even ice clinking in my husbands glass echoed and seemed painfully loud.
Things calmed down with the medication thank God!

Last year the symphony triggered me for days. Violin music bouncing off the walls.

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Now If that was me I’d feel it in vibration through the floor. I’m extremely vibration sensitive. Personally I blame VRT for the increased vibration sensitivity. All those hours marching on different surfaces. Memory foam shoes seem like a trampoline still. Yet I don’t experience ‘marshmallow’ floors. All very odd. Helen

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