My So Called Dizzy Life

My Chronicles of Vertigo, Nystagmus, Imbalance & Dizziness

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

on May 20, 2013

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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6 responses to “Dizziness Made My Eyes Temporarily Googley…and They’ve Never Quite Recovered…

  1. Carol Lowe says:

    This absolutely so true for me too. All the Dr.’s I have gone to haven’t a clue. Except for the ent that diagnosed it after hearing test. Life for the last three years has about come to a stand still for me, don’t drive or do hardly anything. If only I could get some kind of help. I take care of my very sick husband and it is so difficult. Thank you for writing this so indeed I don’t think I’m going crazy like some of the Dr.s think. I am certainly old enough to deal with problems and know my body that all the anti depressants they want to give me would really do me in. Again thank you for sharing this.

    • Emily says:

      Hi Carol,

      Thanks for the comments. I’m sorry that you’ve had to struggle so. Know that you are not going crazy and that there are others out there that know what you’re going through. Sometimes I think that doctors just suggest anti-depressants when they can’t figure out what’s wrong! Be persistent and keep looking for a doctor that can help.

      Best,
      Emily

  2. claudia says:

    HI Emily, I just found your blog on facebook posted on Vestibular Disorders Association. Since Jan 2008, I am continuously searching for an answer for my dizzy symptoms. I don’t have the spinning effect nor nystagmus, however, I have a horrible lightheadedness, foggy head, left ear stuffiness, head heaviness, symptoms of nausea, shortness of breath symptoms whenever I do anything that increases my heart rate or if the temperature (indoors or outdoors) is above or below 65 degrees. I have seen so many types of doctors and had a host of tests completed which helped to eliminate major organ diseases/ MS and all came out normal. I had one dr. say MAV then another who believes I should do surgery for a Perlymph Fistula. But I am determined to hang in there until I find the diagnose that rest internally with me. I really appreciate your blogging as at times i feel like i’m going crazy and nobody is listening. In addition, I have to mention that I originally started out with KAISER when I first encountered my inner ear condition. I had to drop them because I was sent back and forths between the neurologist and ENT. And not to mention how I had to DEMAND a MRI. It was ridiculous! It was so overwhelming that I burst out crying in the Dr room. Then based on my out burst the dr. tried to diagnose me with depression. I don’t really wish that process on anyone. It was the worst experience ever!! Anyways, I truly understand the decision making process that you are in. So I hope this link to a dizzy forum will be helpful for you by connecting you to others that have been diagnosed with your condition. The site is here: http://thedizzylounge.com/simplemachinesforum/ In addition, I found this video on youtube. The test is fairly simple to take. Here’s the video: http://youtu.be/7fTe0jkIh1A.

    I pray that everything gets better for you! Cheers Claudia

    • Emily says:

      Hi Claudia,

      Thanks for sharing – I really appreciate it. I think that sharing our stories with each other helps so much. It lets us know that we are not alone.
      I haven’t been disatisfied with Kaiser, with the exception of my ex-primary care physican; but I’m pretty sure that had more to do with her being a really (*really*) bad doctor and less to do with it being Kaiser. My doctors have been more than willing to run tests, including tests that I ask for. But, of course, I still wish there was more they could do. One specialist that I saw said that he wished he could do more, but that the medicine just wasn’t advanced enough for vestibular disorders.
      Thank you for the link – I will check it out.

      I wish you dizzy-free days in your future,
      Emily

  3. All of the above have been my reality for the last five years ! Some days are worse than others .Here in Australia diagnosis is almost impossible, you name it Ihave done it!! I have given my illness the name of Tabitha who visits I dread . I have discovered riding a bike in a safe place or car travel can confuse my brain and send new movement signals . I really feel that it becomes a roller coaster of symptoms ( mine being ) headaches , hyper vigilance , anxiety , tiredness .Only when I stopped thinking I was crazy and transferred my energy into ridding myself of fear did I start to improve .Its still hit and miss but I no longer think I am on my way out ….

    • Emily says:

      Hi Doreen,

      You are wonderful! Not only are you extremely wise (I think I need to focus on ridding myself of fear) but also you are truly inspired! I love that you’ve named your illness. What a creative spirit you have! I may have to borrrow a page from your book and give my illness a name. 🙂

      I hope Tabitha packs her bags and goes on a loooong vacation!
      Emily

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