Charles Bonnet Syndrome and Geographic Atrophy

I am 10 years into my journey with dry macular degeneration. For many years I had no noticeable symptoms, but as I reached the intermediate stage I began developing symptoms.

My symptoms in the intermediate stage

Blurred vision, the inability to see details clearly, is a hallmark of macular degeneration. In the beginning my blurred vision was mild and I attributed it to dirty glasses or hazy weather. I kept asking my optometrist to make my glasses stronger. Slowly I realized the blurred vision wasn’t going away.¹

One of the subtle changes I noticed in my vision is the fading of colors. The hardest for me is traffic signals. I can clearly see red or green; yellow not so much. It makes driving tricky.

Distorted vision manifests as wavy or crooked lines. Poles appear crooked. The strangest distortion I experience is oncoming cars that appear misshaped. I also have ghost vision (or double vision). Cars appear to have 4 headlights instead of 2.²

Another symptom I developed as I reached the intermediate stage was losing depth perception. The worst part is walking down stairs or on uneven ground. It has caused me several serious falls with injuries including a broken vertebrae.

Progressing to geographic atrophy

Last year I advanced to geographic atrophy (GA). At this stage, photoreceptor cells begin to die resulting in blank spots in vision. GA has brought a worsening of symptoms. When walking outdoors I must focus on the ground. The fall resulting in a fracture happened when I took my focus off the ground.

Early symptoms of Charles Bonnet syndrome

Charles Bonnet syndrome is not a well known condition. It can occur in people with vision loss and results in visual hallucinations. I never thought I might be experiencing early symptoms of Charles Bonnet syndrome.³

I noticed a bright light when I closed my eyes at night, and a spinning pinwheel. But I didn't associate it with the syndrome. I would frequently see my husband sit up in bed, get up and leave the bedroom. But when I checked the bed, he was still asleep. The oddest symptom was seeing bold, white random letter or numbers appear with my eyes closed.

My specialist confirmed the diagnosis

Fortunately for me, I was aware of the syndrome and it’s symptoms. Thanks to MacularDegeneration.net. for raising awareness through first person stories on the website. I also learned more about Charles Bonnet from an elderly man I sat by in church services. I was aware my friend had macular degeneration, but none of his friends or family knew he was having hallucinations from the syndrome. Sadly he had 2 auto accidents before he acknowledged the hallucinations.

It was only after I read first person accounts of similar visions in a Reddit thread that I realized my visual oddities were likely the early signs of Charles Bonnet. All these occurrences were my brain trying to make sense of the world around me.

At my last visit, I asked my retinal specialist about my symptoms. He explained it was my brain making up stuff to fill in blanks in my vision. My suspicions were confirmed; I have Charles Bonnet syndrome.

If you have Charles Bonnet syndrome what were the|earliest signs? Leave a comment to share your experience.