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Have you heard the word "vestibular"? Do you
know how you keep your balance? Do you ever
get dizzy for no obvious reason? OK, for
that last question, you might think, "well, if I spin around, I get
dizzy." True enough, but I mean if
you get dizzy when you are literally standing still. Or if you feel like the world is moving
around you when you know that it is in fact, NOT doing anything. And neither are you.
Before I got sick, I didn't think much about any of that. Like most people, I took my balance for granted. I always had trouble with motion sickness,
and discovered I couldn't watch 3D movies, but I figured a lot of people were
like that. I've learned a great deal
since getting sick, through a variety of sources. My OT, Joyce, who is a Feldenkrais
Practitioner. My Vision Therapist, Ann,
who is supervised by Dr. Neil Margolis, Developmental Optometrist. The Vestibular Disorders Association, VEDA,
which has a very comprehensive website that includes a page about Migraine
Associated Vertigo (MAV). Consulting
with a Registered Dietician about my Migraine Diet. Support groups on Facebook.
I now know there are four basic components to the entire
system of balance and they all need to work together. You have your eyes, your inner ear,
proprioceptors (part of your nervous system), and of course your brain. Your brain is constantly processing all kinds
of information, but there's one part of your brain (the cerebellum) that does
the majority of the work when it comes to balance.
For info on proprioception done
by proprioceptors, which has to do with movement in space, here's a link to the
Wikipedia page:
How your eyes work in regard to
balance is complicated. One piece of
this is the vestibulo ocular reflex, or VOR.
Everyone has a VOR, and it has to do with image stabilization. Your VOR is what helps you know when you are
not moving, when other things are, and helps you feel stable even when you are
moving. Very important stuff. Here's a link to a piece I wrote about the
VOR, which has info from Wikipedia:
I have problems with my VOR,
which I believe is at least partly because since I have trouble with eye
teaming - Convergence Insufficiency (my diagnosis) - the messages my brain gets
are confused. Image stabilization (the
function of the VOR) is difficult when messages get mixed up. I also have trouble, and work in vision
therapy on eye gaze switching. Again,
when eye teaming is an issue, switching from one thing to another gets to be a
lot of work, and coordinated vision is far better than disorganized vision.
I've known for quite a while
now that watching movies with special effects, or animation is difficult for
me. I believe this is because part of
how your brain figures out visual input is through a degree of logic already in
your "database." But special
effects and animation don't follow those rules.
That's really the point of using those two elements in movies - the
filmmaker can do things that aren't normal.
But normal is what my brain wants.
Some people with vestibular
disorders have hearing loss. I have the
opposite problem. I have very acute, sensitive
hearing, which means that loud noises are very difficult for me. I have a very low tolerance now for thunder,
or sirens, or loud music. Despite my
love of music, there's some more tonal types I can't listen to. If I enter a room with a lot of people, it
takes me a while to get acclimated, and too much noise can just overwhelm me. Also due to MAV, I'm very sensitive to light. I no longer watch fireworks, and avoid lightning
if I possibly can.
I don't understand my disorders
as much as the medical professionals I work with, but I've tried to gain some
understanding. As I move through my day,
when I have a problem, my management is better because of what I know. Better management means less anxiety. It's very freaky to feel off balance
(disequilibrium) or dizzy. Knowing WHY
helps me. I can't always do something to
make the situation better, but sometimes I can.
It might be something as simple as sitting down to do something, rather
than standing. Even if I can't do
something, being able to say to myself "OK, that just happened because of xyz,
rather than 'woah, WHAT is going ON?!" is clearly better.
If you don't know what's wrong with you, don't give up on
trying to find out! Living with these invisible
disorders isn't easy, but knowing what's going on, and doing my best to get a
handle on management makes a difference.
Very good post and information Tamar. Since my issues began, movies are out for the most part. Stadium seating? No way! IF, I were to go, it's always at the end of the run so I can sit where I am comfortable (close to exit if I freak!) and in the lower rows (but not in front rows!). Knowledge is POWER!
ReplyDeleteThank you Margaret :-) ... I watch movies at home - on our older, not large, not flat screen TV... I would never go to a stadium now! BTW, let me know if you see this reply - I've been quite sure how it works, bc people don't reply to my replies...
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