Hi Brandi and Karl,
I am 50, and I have also been diagnosed with bilateral NAION. And Karl, I live in Greenville, NC! It started in February with a gray curtain in the top half of my left eye. Since my right eye compensated for the vision loss, I was able to function, but I had a sequential event 15 days later. My vision was totally blocked with something similar to light gray wool spread across my entire field of vision. It took about five days for it to set in, and all of a sudden, I couldn’t drive or see my computer screen. In February, my doctors in Eastern NC had never seen this in a patient and were speculating MS, but I was referred to Duke and my NO diagnosed me immediately with a “disc at risk” in my left eye and a normal size disk in my right. I have been on a baby aspirin for the past five years, and I still suffered from two concurrent episodes. While the MRI and lab work show no other risk factors, I am scheduled for a sleep study next week. My doctor would not put me on steroids due to side effect risks and no proof that they work and said that it will be 6-8 weeks for the swelling to go down. Fortunately, I have regained much of my vision in my left eye since 2 weeks after the episode. Similarly, I have begun losing the gray wool in my right eye, but I still cannot see a face or read anything with my right eye. I can tell my brain is working hard with trying to make sense of what I am seeing: flashes of light, intricate patterns in the white black space, kaleidoscope of colors when I close my eyes…As for my stereoscopic vision, I simply cannot see the left side of the faces of my family members at the table. For the first time, I was able to see their entire faces three days ago when I was in touch proximity.

At night, I have awakened in a panic on a few occasions since that is how I first lost my sight with my right eye. It is scary. I feel I am in the prime of my career and, all of the sudden, I am taking FMLA for at least a month. When I see my NO in a few weeks, she said she would schedule me with Duke’s visual occupational therapists to get visual device aids and to learn to deal with my vision loss. She also mentioned that they would work with me to assess my driving ability. That was devastating to hear. However, I am trying to remain positive since I have improving vision. Although, I am suffering from a slight tear that runs diagonally through my left eye, only little spots of vision in my right, and I suffer from contrast, glare, blurry vision, central acuity and visual field loss. Has anyone tried amber glasses? I tried some tinted glasses at the store and they seemed to really help with the glare and contrast. I wear glasses already, so I will need to hold off until a new Rx. My progressive lenses are not very effective at this time.
that felt good to unload. I am so happy I found this group. It is so isolating trying to describe what I am experiencing. No one understands. I have even taken photos with my phone and edited them with gray and white streaks to show what my works looks like, but they still have a hard time grasping it.