Experience with Charles Bonnet Syndrome
by Marge Louer
I am 93 years old and was diagnosed with macular degeneration several years ago. About one year ago, I began having hallucinations that puzzled and confused me. The most regular one was a miniature of a woman’s round and placid face, surrounded by bushy gray hair that extended onto her chin. She appeared as a bearded lady. Sometimes three or four images of my bearded lady would appear at the same time. These hallucinations would come and go. Other images were of varying patterns and colors of textile designs and of a subway map. But when these hallucinations began to appear constantly, I felt so distressed that I went to the emergency room at the New York Presbyterian Hospital/Cornell Medical Center in New York City. I spent the whole night there and was put through a series of brain scans and many questions. At that time, I informed the doctors of my diagnosis of macular degeneration. However, the next morning I left with no more understanding of the hallucinations. I was also assured that there was nothing wrong with my brain, and that was a big relief.
Nevertheless I wanted to know more about why I continued to hallucinate with no regularity, but often enough to distract and puzzle me. I asked my daughter to research this condition on the Internet. Without much difficulty, she soon found that this phenomenon is well known in England. People with macular degeneration are commonly informed that hallucinations often accompany this disease. I was very surprised that the doctors I met did not seem to know this medical fact.
In 1769, Charles Bonnet described this condition. “Sufferers who are mentally healthy people with significant visual loss have vivid, complex, and recurrent visual hallucinations.” The retina is badly damaged by macular degeneration and sends strange messages to the brain, which gets confused and tries to interpret these jumbled messages which results in hallucinations. Quite simply, it is a damaged retina, not a damaged brain. This knowledge informs and consoles the individual who may experience hallucinations with macular degeneration.
Shortly after I wrote this article, I met my neighbor, who asked me, “What’s happening?” I told him about my experience with hallucinations and my concern to share what I had learned. When I finished, he thanked me and then told me that for several years, he had been seeing visions of green or ashen forests. He had never told anyone for fear they might think he was crazy. He told me he has retinal disease and thanked me for sharing this information with him. He promised to speak to his ophthalmologist about this.
I want all individuals with macular degeneration, retinal disease or severe visual loss, and all doctors who serve them, to be aware of the occurrence of hallucinations that might accompany their disease.
For an audio/visual presentation about Charles Bonnet Syndrome, including an interview with the author, see “Hallucinations and Low Vision–Understanding Charles Bonnet Syndrome”.