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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I’m Still Hanging In…

OK, so I’ve been MIA for a few months.  Turns out that having a Vestibular Disorder is more than tiring – it’s exhausting!  I don’t think I ever really understood what fatigue was until I got the dizzies.  Between my basic everyday activities and working my full-time job, I’ve just had no energy.  Or time.  I’ve felt drained.  For weeks and weeks (OK, months and months), I felt really guilty for not posting on my blog and writing summaries of my weekly vestibular therapy.  Admittedly, I didn’t respond to comments.  I felt rude.  I felt I was letting myself down.  Then I remembered that I wasn’t Superwoman.  I gave myself permission to take a break.

So what have I been doing?  Well, I saw another specialist in December who practices Otology and Neurotology.  I decided that I wanted a second opinion before proceeding with the intratympanic gentamicin injections that my doctor was recommending. (Read more about that here.)  After meeting with the new specialist, I decided that it was OK to give myself more time to compensate.  Maybe waiting won’t change my uncompensated vestibular neuropathy, but maybe it will.  Maybe I’ll learn to adapt better, maybe I won’t.  The one thing that I know for sure is that I am in control of choosing what path I will take.  I am in charge of the timeline and if I decide to proceed with the destructive treatment it will be when I am ready.

In the meantime, I’m just taking life day by day (I know, sounds cheesy.)  Most days I feel OK, some days I’ve actually felt good, and some days I feel icky.   I’ve actually felt icky the past 4 days.  Normally, my dizziness is always there; present in a turn of my head or a fast movement of my body.  But in the past 4 days, the dizziness has been swirling around my head, making it hard to focus.  I feel sick.  ( I’m sick of feeling sick.)  I feel scared.  (I don’t want the dizziness to get worse.)  But I just keep reminding myself that “shit happens” and I will get past this.  I’m trying to focus on far I’ve come.  I’m trying to focus on good things.  Last summer I had to use a walker to get around.  Now, I have the balance to go hiking (with my trekking poles).  I’m hoping that being positive will give me the energy and strength to get past the bad.

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Sigh…

I want to start out by saying that I left work today in a good mood.  I have the day off tomorrow.  Who doesn’t love a three-day weekend??  I was ready for some relaxation and some fun.  I was feeling good.  So good that I decided I should swing by Kaiser and get my annual flu shot.

If I could go back in time, I wouldn’t have gone there today.

The first thing that I didn’t anticipate was having to wait in line for nearly 1/2 hour.  The waiting didn’t bother me as much as the staying balanced while not leaning on anything.   I had no wall by me.  I felt nervous.

The second thing that I didn’t anticipate was how waiting in a line with other people was going to effect me.  There was an extremely loud woman behind me who either knew half the line or decided that today was the day to make lots of new friends.  Either way, I was already a little on edge since she was shouting in my ear.  Loud sounds, piercing sounds, annoying sounds – they seem to throw my balance off.  I’m very sensitive to them now.  I don’t know why.  At this point, I already felt a little overwhelmed.

Then the loud woman bumped into me.   This caused me to stumble a little.  But all was OK – I was still upright.  Then she bumped me again.  My patience was wearing thin and I was so worried that I was going to fall.  I moved closer to the person in front of me.  Loud woman moved closer to me.  That’s right – she was tailgating me in a flu shot line!!  Then she bumped me a third time.  This time I turned around and said “Excuse me, but you keep bumping into me.”  She acted like she hadn’t known she was doing it and that it wasn’t a big deal.  I felt I needed to explain more so I said, “It’s just that I have balance issues, so if you bump me one more time I’ll probably end up on the floor.”  This statement got me looks from her and her “line friends.”

And this is why I feel so irritated tonight.  These people looked at me like I was making a fuss over nothing.  After all, I look perfectly fine, why was I complaining?  Plus, I’m young so how could I possibly have balance issues?   It is so frustrating to feel sick, to feel dizzy, to feel unsteady and have people stare at you, not believing that something is really wrong with you.

I will try not to let stupid people and insignificant things get me down.  I guess it can’t be rainbows and puppy dogs every day.

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Girl in Need of Magical Healing Fix

I miss feeling well.   I miss feeling normal.  It’s been so long that I can barely remember what it felt like.  But I know this isn’t it.

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