Eye on Nystagmus

A 2021 Update

Learning About Nystagmus

It was late 2014. Gary and I were waiting for him to be seen by my ophthalmologist in her exam room when I wondered, why are so many superficial siderosis-related conditions seemingly impossible to pronounce without a medical degree? Silly, I know, but I’m never clear about the correct pronunciation. Finally, the doctor walks in talking about the problems Gary has listed, and I think, wow, that’s not even close to how I imagined it. This time our ophthalmologist cleared up my pronunciation question.

Nystagmus is a curious word describing a condition with some very annoying consequences. Nystagmus is a vision condition in which the eyes make repetitive, uncontrolled movements. These involuntary eye movements can occur from side to side, up and down, or in a circular pattern. As a result, both eyes are unable to hold steady.

Nystagmus, noun, nys·tag·mus \nis-ˈtag-məs\:  a rapid involuntary oscillation of the eyeballs

Nystagmus may be accompanied by unusual head positions and head nodding in an attempt to compensate for the condition. Nystagmus can be inherited and appear in early childhood or develop later in life due to an accident or illness. Generally, nystagmus is a symptom of some other underlying eye or medical problem. However, the exact cause is often unknown.

Persons with nystagmus may experience reduced visual acuity. They may also have problems with depth perception that can affect their balance and coordination. Nystagmus can be aggravated by fatigue and stress.

Most individuals with nystagmus can reduce the severity of their uncontrolled eye movements and improve vision by positioning their eyes to look to one side. This is called the “null point” where the least amount of nystagmus is evident. To accomplish this they may need to adopt a specific head posture to make the best use of their vision. 

The American Optometric Association

Recognizing The Time For Concern

Gary’s vision began to be a concern in late 2015 when his ophthalmologist and neurologist strongly suggested he stop driving. Eight months before this first ophthalmology appointment, we didn’t have a name for his vision problems. Early on, he first had begun to experience trouble judging distance, and his pupils would constrict down to pin top size or dilate to different extents. Different sized pupils is a condition with an equally hard to pronounce name, Anisocoria (Unequal Pupils). Focusing on print took an incredible amount of effort. Finally, our neurologist let us know his eyes were no longer tracking in tandem.

That initial 2014 ophthalmology exam showed his reading vision was significantly worse than just six months prior. He also had the early signs of age-related cataracts, was high-risk for Macular Degeneration, and had a severe problem with dry eyes. The doctor gave him samples of Refresh brand eye lubricant for daytime use and suggested trying the ointment form in both eyes before going to bed at night. We scheduled his return in six months with the hope his vision problems wouldn’t continue to decline.

Update December 2021

Gary eventually tried care from two additional ophthalmologists before returning to his original provider in 2020. Unfortunately, his vision has progressively declined over the years. His nystagmus seems to worsen when he is tired, and now when he is reading closed captioning, it will appear as if it’s scrolling. To read more about Gary’s superficial siderosis related vision symptoms, check out When Your Eyes Have A Mind Of Their Own.


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Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor,

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