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.