My So Called Dizzy Life

My Chronicles of Vertigo, Nystagmus, Imbalance & Dizziness

Dizziness Made My Eyes Temporarily Googley…and They’ve Never Quite Recovered…

Prior to my first attack of the dizzies in May 2012, I did not have trouble seeing nor did I wear glasses.  When I was growing up, all I wanted were glasses!  I know, not usually something that you hear kids pining for.  (What can I say?  I’ve always marched to the beat of my own drum.)  To my great disappointment, every time I went to the eye doctor I had perfect vision.

When I had gone to my ex-primary care physician in June 2012 complaining of headaches, dizziness, and trouble getting my eyes to focus, she suggested that I needed to make an eye appointment. (Read more about that horrible doctor appointment here.)  Next thing I knew, I had glasses and my perfect vision went out the window.

After I came down with a case of the dizzies, and as a part of my Vestibular Rehabilitation Therapy, my physical therapist gave me exercises designed to help improve the focus of my eyes.  I performed eye exercises designed to retrain my brain.  These exercises helped and, eventually, I improved.  I became much better at tracking objects with my eyes.  Even better, after months of checking the mirror every morning,  I no longer had nystagmus.   But still, I questioned every doctor about my eyes because they felt so different.   I kept reporting to any doctor who would listen (and even to those who wouldn’t) that my eyes and vision felt strange.  No doctor seemed to think it was that important.  I began to question what my eyes were like prior to the dizzies.  Wasn’t I always the one who could read from far away?  Or maybe I couldn’t remember that I had trouble reading words from a distance?  Were words blurry before?  I doubted myself.

In December 2012, my husband went for an eye appointment with a doctor he had been seeing since he was a kid.  During the appointment, the subject of me and my dizzies came up.  My husband’s doctor kept asking him questions about me and, surprisingly, he knew all about vestibular neuritis (by this point we were quite used to having to explain what it was…even to those in the healthcare industry!)  As luck would have it, this doctor was no ordinary Ophthalmologist.  He is an Ophthalmologist who has experience dealing with patients who have Vestibular Disorders and whose area of expertise includes visual rehabilitation!

I was able to get an appointment with this doctor in early January.  It was one of the best doctor’s appointments I’ve ever had.  This doctor understood what I was going through.  He didn’t discount me or what I had been experiencing.  He believed me!   It wasn’t all in my head!

As a reminder, balance is achieved by using input from the following: 1) the Vestibular System; 2) Proprioception (the sense of the orientation of one’s limbs in space, in other words, your sense of touch and the feeling of the ground beneath your feet); and 3) Input from your Vision.  I already knew at this point that I had a non-functioning right vestibular system.  I also already knew at this point that I had uncompensated vestibular neuropathy (more about that here).  But now I had a doctor confirming that I had become overly dependent on my eyes as a result of my vestibular disorder.  The Ophthalmologist gave me a lengthy written report of my examination, which states the following: “Emily has history of vestibular hypofunction following vestibular neuronitis of the right ear.  She has visual oculomotor dysfunction, convergence insufficiency with visual motion hypersensitivity.  She appears to have developed visual dominance after her above vestibular disorder.”

AH-HA!!  It explained why after my attack of the dizzies, my eyes now feel tired all the time and I frequently suffer from headaches!   It explained why my balance sucks in the dark!  It explained why my eyes feel different!  My little eyeballs are working overtime to inform my brain about position and movement, in order to help me maintain balance.  After all this time of not even knowing what truly caused my vestibular disorder, having an answer to something was like wrapping myself in a large, soft, cozy blanket.  I was comforted.

Having the doctor tell me about my visual dominance didn’t solve anything; it didn’t cure anything.  But it reassured me.   Because Vestibular Disorders are usually invisible to those around you, we can have a tendency to doubt ourselves.  To wonder if we are imagining symptoms.  I’ve learned that it doesn’t matter if a doctor doesn’t think your symptoms are important.  YOU are the expert about your body, not them.  It does not matter how many letters they have after their name, they are not inside your skin and they do not feel what you feel.

Don’t doubt your body and the messages it sends you. 

Trust yourself.

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What I Mean When I Say I’m Dizzy & Why I’m Sometimes Frustrated

Fair warning: this post started out as a PSA and veered off into another direction…

When your Vestibular System is out of wack, that’s when you can experience dizziness or even vertigo.  For me, vertigo is more of a horrible, spinning sensation.  A tilt-a-whirl you can’t get off of.  An amusement park ride that’s not so amusing.  Extreme nausea.  The feeling that I’m weighted down and falling to the floor (which I’m pretty sure I would if there was no one there to hold me up).

My Dizziness is sometimes more like a little ripple of the vertigo, this weird uncomfortable sensation: like if I turn my head, it feels like my head hasn’t caught up to where I am.  My head feels unsteady.  I feel unsteady.  When I’m dizzy I can feel nauseous.  I feel it if I turn around too quickly or when I’m practicing some of my vestibular rehabilitation therapy exercises.  And like butterflies in your stomach when you feel naseous, I also feel the butterflies in my head, spinning around, making me feel woozy.  When this happens, I want nothing more than to close my eyes and pray for the tranquility of stillness.  When I’m really dizzy, I have no balance.  I’m more than clumsy.  If I walk, I look like I’m drunk.  Unsteady and stumbling.

The other night I felt so dizzy; it was like there was a violent sea in my head, waves sloshing around so that I couldn’t find my balance.

It’s not normal to feel dizzy like this.  It’s not normal to feel dizzy if I turn my head “too quickly” (which would probably be a normal speed for you!).  It’s not normal to feel dizzy if I tilt my head to the side.  It’s not normal to feel dizzy if I tilt my head back.  It’s not normal to feel unsteady when I walk.  And you know what else?  It’s not fun either.  Heck, spending my days trying to stay balanced, battling this dizziness, and doing vestibular physical therapy is draining.  I may look perfectly normal and healthy to you when I’m sitting down, but I don’t feel that way.  This is not a vacation.  This is not fun time off.   This is not me lounging around.  This is not a relaxing break from work.  This is a struggle everyday.

And I’m not trying to sound negative, angry, or invoke a pity party; I don’t mean it that way.  Sometimes you just need to vent (& I’m pretty sure that somewhere on this blog I warned you that this was my space to vent).  I know my body and I know what I’m feeling isn’t normal.  I know that I won’t ever let another doctor disregard me when I tell them something is wrong.  I know that there are people that think I’m just at home, relaxing everyday.  I know I can’t do anything about what they think and I know I shouldn’t care what they think.  I know that this will be a struggle, but I know am tough enough to fight this.  So to heck with the boneheads and the dizzyness!!

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Vestibular Neuritis and the Vestibular System: What the Heck Am I Talking About?

I’ve been throwing around terms and words on this blog that up until a month ago I had never heard of.  This blog has gotten a bit “jargonny.  I can honestly say that I had never heard of Vestibular Neuritis and if I had heard of the Vestibular System, I had no idea what it did.  Biology class was a looong time ago.  Here is my understanding of everything, keeping in mind that some of my symptoms right now are memory-loss and concentration problems.  If someone tells me something, it’s best for all of us if they repeat it and write it down.  But we’ll get to that…

You have this neat Vestibular System located in your inner ears.  This system talks with your brain and helps control balance when you are standing and walking.  It is responsible for maintaining your posture and your body’s orientation in space.  It helps with your coordination.  It helps you maintain focus on objects when your body is in motion.  For example, it helps keep an object from becoming blurry if your head moves.  Here is a diagram of the anatomy of the Vestibular System.  Confused yet?  Just think Vestibular system = Balance System.

Vestibular Neuritis is most simply an infection in the inner ear.  (Not that it feels simple to someone who has it).  In my case, the doctors believed that a virus struck my vestibular nerve and that is what caused my severe vertigo and nystagmus.  When the infection hits it causes the vestibular nerve to send wacky (incorrect) messages from the ear to the brain.  You end up with a very confused balance system.   The doctors came to my diagnosis by assessing my symptoms and ruling out other things like Stroke, MS, Head Injury, etc.)  It is, unfortunately, a diagnosis of exclusion.  What is the virus and where did it come from?  No one knows.  The other unfortunate part is that the virus left me with permanent damage and a 100% non-functioning right vestibular system.  Luckily, I was born with two and the ability to compensate.

And, finally, back to those symptoms like memory-loss and concentration problems that I mentioned earlier.  Here is a list of symptoms published by the Vestibular Disorders Association, that people with different vestibular (balance) disorders may experience (I left out any related to hearing loss, as that is not associated with Vestibular Neuritis):

Vertigo and dizziness
▪ Spinning or whirling sensation; an illusion of movement of self or the world (vertigo)
▪ Lightheaded, floating, or rocking sensation
▪ Sensation of being heavily weighted or pulled in one direction

Balance and spatial orientation
▪ Imbalance, stumbling, difficulty walking straight or turning a corner
▪ Clumsiness or difficulty with coordination
▪ Difficulty maintaining straight posture; tendency to look downward to confirm the location of the
ground
▪ Head may be held in a tilted position
▪ Tendency to touch or hold onto something when standing, or to touch or hold the head while seated
▪ Sensitivity to changes in walking surfaces or footwear
▪ Muscle and joint pain (due to difficulty balancing)

Vision
▪ Trouble focusing or tracking objects with the eyes; objects or words on a page seem to jump, bounce,
float, or blur or may appear doubled
▪ Discomfort from busy visual environments such as traffic, crowds, stores, and patterns
▪ Sensitivity to light, glare, and moving or flickering lights; fluorescent lights may be especially
troublesome
▪ Tendency to focus on nearby objects; increased discomfort when focusing at a distance
▪ Increased night blindness; difficulty walking in the dark
▪ Poor depth perception

Cognitive and psychological
▪ Difficulty concentrating and paying attention; easily distracted
▪ Forgetfulness and short-term memory lapses
▪ Confusion, disorientation, difficulty comprehending directions or instructions
▪ Difficulty following speakers in conversations, meetings, etc., especially when there is background
noise or movement
▪ Mental and/or physical fatigue out of proportion to activity
▪ Loss of self-reliance, self-confidence, self-esteem
▪ Anxiety, panic
▪ Depression

Other
▪ Nausea or vomiting
▪ “Hangover” or “seasick” feeling in the head
▪ Motion sickness
▪ Ear pain
▪ Sensation of fullness in the ears
▪ Headaches
▪ Slurred speech
▪ Sensitivity to pressure or temperature changes and wind currents

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