Charles Bonnet Syndrome: Seeing Images That Are Not There

January 15, 2020 | 1 Comment

by Kathy Austin, CVA

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Willow tree with branches hanging into a brook. These scene is similar to the hallucination brought on by Charles Bonnet Syndrome.

 

“It started in a dimly lit restaurant where I was dining with my brother. He gradually disappeared behind tall grasses, shrubs and soon was hidden by a weeping willow tree with a brook running by. I looked to my side, looked back, and my brother was back. The bucolic scene was gone but it came back three more times that evening.”

Is this person a little crazy? Suffering from dementia? On drugs? No, Marja has macular degeneration and experienced what is called Charles Bonnet Syndrome.

 

What is Charles Bonnet Syndrome?

Charles Bonnet Syndrome has recently been recognized in the International Classification of Diseases (ICD-11) and refers to hallucinations experienced by people who have partial or total vision loss. These hallucinations are only visual and usually temporary. They are not related to behavioral or mental disorders. The hallucinations can be flashes of light, shapes or geometric patterns. They can also be images of faces, animals or of complex scenes such as Marja experienced.

Recent statistics indicate that up to 40% of people may experience these hallucinations. And the numbers may be even higher. Many individuals are reluctant to talk about hallucinations, fearing that family members or others may think there is something seriously wrong.

 

What Causes Charles Bonnet Syndrome?

Researchers are working to determine the cause of Charles Bonnet. One study indicated it may be a neurological condition related to elevated electrical responses in the visual cortex. Other researchers believe it is the brain filling in gaps of what the eyes are not seeing. Whatever the cause, it is a neurological issue, not related to mental illness, dementia or other disorders.

 

How to Cope

Many people find the hallucinations disturbing or unsettling. Dr. Dominic Fytche, an acknowledged expert on this condition, recommends these coping strategies that may help make the hallucinations disappear.

  • If sitting, stand or if standing, sit.
  • Walk into another room.
  • Turn your head slowly from one side to the other.
  • Stare or reach out at the hallucination.
  • Change whatever you were doing at the moment.
  • Increase or decrease the light level in the room.
  • Blink your eyes once or twice.

 

Talking About Charles Bonnet Syndrome

The existence of Charles Bonnet is unfamiliar to most, even some doctors. So, knowing about the condition can ease the minds of those who are experiencing hallucinations. A member of our Vision Exchange email discussion group shared how knowing about the syndrome was personally valuable. When a family member started insisting their mother had dementia, she offered an alternate reason. And, in fact, the hallucinations were a result of her mother’s low vision.

Marja shared her own story with her low vision group. Soon, others who were struggling silently with the phantom visions began sharing about how they cope. Marja encourages others to be open in sharing as it helps others realize everyone is on the same footing.

 

Learning More

To learn more about Charles Bonnet Syndrome, check out the following resources:

Downloadable booklet from Royal National Institute of the Blind

Hallucinations and Low Vision: Understanding Charles Bonnet Syndrome with Dan Roberts and Oliver Sacks

Charles Bonnet Syndrome Foundation

 

Kathy is the Community Engagement Specialist at Second Sense.

1 comment on “Charles Bonnet Syndrome: Seeing Images That Are Not There”

  1. I lost most of my sight 12 years ago – due to Ischemic Optic Neuropathy. At the time I was a college professor, and I retired a year after sight loss. While I was at a rehabilitation center in Pittsburgh, PA the year after my sight loss – and while seated at a round table during a group activity, I had to close my eyes for I was no longer seeing the group members, but seemed to be watching a movie instead. I had to close my eyes for a minute, and when I opened them, the group was back. Since that time, I have this experience a lot – daily. It is always movie or cartoon-type of images. I have learned to just sit an watch that character and in a few moments it melts back into the back ground and I am still looking at what I was looking at before the image appeared. But, they are so realistic – I see them in very clear detail and I watch their gestures and movements while they are there. I never told anyone what I was seeing until recently. I knew it was not “real” and I knew if I waited it out, it would be gone soon. I never discussed this with anyone, including any of my doctors and family. I have shared this with only a very few people at this time.

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