I've written about wanting people to be familiar with the
term "vestibular", but prior to getting sick, I don't remember if *I*
was familiar with the word, and I don't think I knew anything about the
vestibular system. I had experienced
temporary dizziness in various situations, as well as headaches, and definitely
had heard of migraines, but I didn't know about MAV. As far as my eyes were concerned, I knew
about vision diseases, but other than people needing glasses for near or far, I
knew nothing about vision disorders. I
think a lot of people who know me still get pretty confused about what I'm
dealing with.
There are an incredible number of different disorders,
and symptoms that go under the umbrella term "vestibular." This is one reason, I think, why people so
often post on FB "do you experience (fill in the blank)?", "has
anyone else had (fill in the blank) happen to them?". I've also had questions from people asking me
if I've heard of (fill in the blank) because I have a vision disorder. I don't object to the question, but it shows
how many different problems there can be, and the complexity of these systems
in our bodies.
I've used the term invisible disorders a lot, because all
of these terms/disorders are invisible. Many
people with vestibular disorders have combo diagnoses, possibly one thing
resulting from the other. Many people
have heard of Meniere's Disease, migraines, and Benign Paroxysmal Positional
Vertigo (BPPV), but there's a lot of other diagnoses that fall under the term
"vestibular." A vestibular
disorder technically means you have a problem with the system in your inner ear,
even if you don't actually FEEL it in your ear. The word vestibular, if you Google
it, which I did, originally came from the word "vestibule," which is a sort of inner room. Once upon a time, the inner ear was described
this way, and the word vestibular, which refers to this "inner room"
came about. If you look up the word
"vertigo" the meaning refers
to dizziness, but in the medical community vertigo refers to disequilibrium,
being off balance.
In addition, if you do an online search, vestibular and
balance disorders have separate definitions, and so does vertigo. By definition, a balance disorder means you have
some trouble with balance. There are
lots of reasons for balance problems; balance disorder to me is another huge
umbrella term. There are lots of
different vision disorders, many of which can affect balance. It's very
difficult to find info online about my vision disorders in adults; I haven't
found anything useful to date. This
surprises and frustrates me, because although I know my vision disorder is much
less common than MAV, I know there are other people out there (I'm not my doctors' only
patient!), and vision plays a huge part in balance.
A little background now about what I know about what happened to me that
resulted in my vestibular (MAV) and vision disorders. I didn't suffer any injuries, don't have any
nerve damage, nor did I have a virus that caused my invisible disorders. My migraine condition is due to a combination
of hereditary factors, and hormone changes due to menopause. Regarding vision, I'm pretty sure I had
undiagnosed Convergence Insufficiency (CI) as a kid. This has nothing to do with focusing;
basically it means that my eyes don't coordinate properly in sending messages
to my brain. My CI got greatly
aggravated and complicated, which is why it's really more involved than CI, by
prolonged undiagnosed balance/dizziness troubles in 2011.
I don't know if there is a "typical" MAV
experience; sensory overload (i.e. lights, noise) is the main reason I might
have balance troubles at this point. In
terms of actual migraines my condition, though not gone is vastly better than
it used to be, thanks in large part to my diet and proper rest. I think my Feldenkrais therapy also
helps. MAV is a fairly common Dx; there are classic symptoms, that you can find
on the MAV info page on the VEDA site but everyone is also individual, and has
their own unique symptoms, experience. To
me, this means you have to get to know yourself, and how your condition affects
you.
I haven't talked much here about the specifics of how my
vision disorder is affected, what gives me trouble. It's harder to explain than MAV, besides some
fairly obvious stuff like movement and driving.
When someone is with me, they can ask me a question, and people can ask
me online for that matter. I'm learning
that I need to give basic explanations, rather than presuming that people get
what I experience. Especially since I
don't LOOK like there's anything wrong.
Of course, that's the idea behind calling my vision disorder an invisible
disorder, isn't it?
For me, feeling off balance/disequilibrium and being
dizzy (technically vertigo) are not, in my experience, the exact same
thing. They don't FEEL the same to me; I
can feel off balance without feeling full blown dizzy. It's hard to pick it apart, but I FEEL like
my vision disorder impacts my equilibrium more at this point than my MAV
does. Of course, that's also because of
choices or decisions I make in the management department. That said, although the diagnoses for my
disorders are very distinct, how I (or anyone) experience them really isn't
nearly as distinct as the labels make them sound. I think most vestibular/invisible disorders,
in my case vision and MAV, cause overlapping symptoms; one problem affects
another because the systems are all connected, related. Messages are traveling through nerves to
brain to other parts and back again.
I remember early in my quest for a diagnosis, during a
conversation with an uncle of mine, he commented that vertigo is hard to
diagnose because it can be caused by so many things. What we didn't talk about is how frequently more
than one thing is causing the vertigo and/or balance problems, and based on
what I've seen online, this happens to a lot of people. There is research being done, and there are
tests being developed, which is good because it all points towards getting
quicker, more accurate diagnoses. But we
have to remember that labels can be very broad, and don't always accurately
reflect individual symptoms, how we the patients feel. If I hadn't paid attention to what I was
experiencing, how I was feeling, talked to my Feldenkrais therapist, and
realized SOMETHING else was going on besides MAV, I wouldn't be doing vision
therapy now. It's so important, I think,
to be aware of everything, really listen to your body. My inner ear may technically be my vestibular
system, but it's not even close to the whole story for how my body achieves, or
doesn't achieve balance.
It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...