Odd things that we experience?

Just trying to start some activity here, so I thought that I would start a post talking about some of the odd things that we experience. I like the links on the home page that Adam put up (BTW, thanks Adam) because one of them is the first article that I have read that accurately describes my vertigo. I thought that it was rather funny when one of the articles pointed out that people with MAV often run their fingers along the wall to assist with balance.

So, what are some of the odder things that every one experiences? I personally have a whole list of things, but I thought that I would see what others had to say first.

I’m surprised you found an article that pointed this behavior out. I too run my fingers along the walls to stabalize my balance. The VRT therapist pointed this out to me and said I needed to work on NOT doing this and practice letting my eyes and proprioception restabilize my balance.

I still always use railings when walking down the stairs. I got an odd look today from an older woman because she was waiting to use the railing. I think she thought I didn’t need it until she saw me hesitate when I reached an uneven area on the path towards the wheelchair ramp that was at the end of the stairs. I was surprised that a handicap ramp had a big bumpy uneven area that really should have been fixed. Anyway the other lady did finally realize I really did need the railing even if I look young and appeared okay. Do others feel the need to use the handrails going down stairs and slow down and use caution around uneven surfaces or is it just me because of the dizziness and the prior ankle injuries?

I always take stairs and need the railing and I am a young, fit 25yo male. I have always needed
it since being chronically dizzy, and always preferred it even back when I only had episodic vertigo. I don’t think my
vestibular function was ever quite ‘right’.

Hand rails on stairs are a must for me too. I didn’t realize how important it was, or even that I was doing it until one day at the local college library, I tried going down three steps in an area to wide for me to readily grab the rail. Long story short, I almost ended up on the floor, and I was glad that it was just three steps.

One of the places I get the oddest looks is parking my car. I have a handicap sticker, in my thirties and “look” normal. That is until you see me get out of the van and start grabbing everything on my way into the store. I don’t know if those looks are do to me “looking” healthy and normal, or grabbing anything I can to keep from falling over.

One of the hardest things for me is going down the escalator in malls. I can do it at home with not to much problem. Its when I have to look down as I go down. If I could keep my head looking forward it would’nt be so bad. Always bugs me.

This is one of my biggest challenges too. What I found helps with going down the escalators it to have someone stand directly in front of me so I can’t see the rest of the escalator when I look down to get my footing. It’s even better to have 2 people in front of me. I also feel safer because they are prepared to assist me if I need help to readjust my balance. If I am alone I will not go down an escalator by myself.

When I was in Budapest there was a day I rode public transportation by myself and met my roommate to see the symphony. I had directions and a preferred way to get where I was going, but checked along the way to make sure I was on track. The local Hungarians wanted to send me on the metro. Since there English was limited I wasn’t able to communicate to them about my problems with dizziness and riding the escalators. The only way to get to the metro is to ride a very steep long maybe 2-3 story fast speed escalator. It was at least twice as fast as any escalator I’d ever been on even before I was dizzy and had trouble with escalators. EXTREMELY TERRIFYING to me. I did get down it once with the help and support of the group I was with, but there was no way I could do it alone. I even got stuck one time and almost left behind when the group went up because going up was even scary because it was sooo fast. To not offend the kind Hungarians who were only trying to help, I got off the tram bus and went down the stairs to the Metro train and even watched 2 elderly ladies go down the escalator, thought about it and said to myself NO WAY, then went back up the stairs got back on the tram and went the original way I wanted to go which was much longer. I found the symphony hall and made it on time. It was a good thing I had ear plugs with me too, b/c the music hurt my ears.

A couple of the weird things that I experience is at times, I feel like I am walking on the wall instead of the floor.

Another is that I have to be in control of the motion I am experiencing, like I can drive a car but riding passenger feels like a carnival ride. Or I can rock myself in a chair, but please don’t bump me while I am in that chair. It feels like I am being thrown across the room

Hi Brian

That sounds like most of us. I think the issue is “expected motion” versus “actual motion”. When you are in
control, such as driving a car, you know what what motion is going to occur as you are in control. The vestibular system
is less active when what you are expecting to happen does happen.

When someone else is in control, it can be a nightmare as you have much less of an expectation of what motion is going
to occur.

Adam

LOL! It’s nice to see that there is an actual reason (other than “nerves”) in for not being able to handle being in a car when someone else is driving. I usually have to bury my face in a pillow whenever I ride with my husband, otherwise it’s information overload.