My So Called Dizzy Life

My Chronicles of Vertigo, Nystagmus, Imbalance & Dizziness

Happy Dizzy-versary to Me!

It’s official.  Today is my one year anniversary of having a vestibular disorder!  Life is different once you have the dizzies.  I have come to think of life as Before Dizzy and After Dizzy

Before Dizzy, life was easier.  After Dizzy, life is more of an effort.  Before Dizzy, life was calm.  After Dizzy, life is unsteady.  Before Dizzy, the ground was solid.  After Dizzy, the ground is marshmallow.  Before Dizzy, life was “normal.”  After Dizzy, normal means dealing with fatigue, headaches, light-headedness, tinnitus that won’t shut up!, whirling sensations, and imbalance.  Before Dizzy, life was safe.  After Dizzy, life is unpredictable, uncertain, unsettled.  Before Dizzy, life was comfortable.  After Dizzy life is bumpy.

OK, so I’ve established that life changes after having the dizzies.  So…this may sound weird…I think it’s a day to celebrate.  I’m not saying that I’m happy to have the dizzies and I’m not celebrating the fact that I have the dizzies.  I just believe it’s important to acknowledge how far I’ve come.  Last June I had to use a walker to get around.  Today, I went on a 2 1/2 mile hike, with my trusty trekking poles.  I’m celebrating because I survived one year of dizziness!   Heck yeah, I’m proud of myself!

It is easy to feel down when you have a chronic illness.  It is easy to feel down when you have an invisible illness.  It is easy to focus on the negatives.  In the past year, I’ve learned that one of the keys to coping is to pay attention to the positives in your life.  Like focusing on simple pleasures.  Or focusing on the things that make you smile.  Or focusing on yourself and recognizing your own strength.

I encourage all the dizzies out there to celebrate themselves.  Celebrate your strength.  Celebrate your accomplishments, no matter how small.  Celebrate your bravery.  Celebrate your perseverance.   Celebrate your spirit.  Celebrate you.


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.


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.