What is Charles Bonnet Syndrome?

When we think of visual hallucinations, we typically think of mental illness, drug interactions, and dementias.... but vision loss? Not usually. Through personal experience, our family learned the hard way that visual hallucinations can in fact be a result of vision loss.

Our mother lost more than 50% of her vision due to a retinal hemorrhage several years ago. Not long after that, she began hallucinating, seeing large animals (i.e. eight-foot-tall bunnies), vivid colors, snow, and people--both living and deceased, familiar and unfamiliar. She often feels like she is in a crowded space with many people and no space to move around, feeling smothered. She speaks to her hallucinations, and they do not respond, making her feel like they are mad at her. She has difficulty differentiating between reality and these recurrent hallucinations. She has prepared food for her imagined guests and pets. Initially, she kept most of this to herself for fear that she would be “locked up.”

When we asked her doctors about her symptoms, they were not sure what was going on. They said that she had a vivid imagination, or that it was just poor eyesight. No one mentioned Charles Bonnet Syndrome (CBS). We did our own homework and immediately recognized her symptoms as CBS. We followed up with a psychiatrist who confirmed the diagnosis and reassured her that she was of sound mind, and that her hallucinations are a result of a vision problem.

• Charles Bonnet syndrome is a visual hallucinatory condition that occurs in people, including children, with sudden sight loss and can happen to people with good mental health who have no history of psychiatric problems. When people lose vision from diseases like age-related macular degeneration, glaucoma, or diabetic retinopathy, their visual system does not process new images. Without visual data coming in through the eyes, the brain fills the void and makes up images or recalls stored images for you to see. This is what causes the visual hallucinations of CBS. The condition can cause huge distress to people who experience it and can impact on quality of life. Some call it the “nightmare disease” as many experience vivid horrid visions, i.e., insects, snakes, people dressed in costume from an earlier time, imaginary creatures like dragons and gargoyles.

Charles Bonnet syndrome is often misunderstood and can sometimes be mistakenly confused with the onset of dementia or schizophrenia. Although there is no cure for CBS (besides total blindness), there are ways to manage it:

1. Confirm the diagnosis of CBS with a reputable physician.

2. Get adequate sleep. Lack of sleep can increase hallucinations. If you have trouble sleeping, ask your doctor for assistance.  

3. Manage your stress. Talk about what is bothering you to a friend/family member/professional. Get it off your chest.

4. Educate family/friends about CBS; especially neighbors and your local police department.

5. Inform your doctors, as some medications may cause/increase visual hallucinations ie. prescription eye drops, pain medications.  

6. Reach out and try to touch your visual hallucinations and they may disappear/dissipate.  

7. Turn on the lights. Lighting will help with reality orientation/orientation to place.  

8. Change your physical position from standing to sitting to walking, etc.  

9. Shift your gaze, close your eyes, change your field of vision.  

10. Call a friend and tell them what you are seeing. Hopefully, they can reassure you that you are safe, and that it is just your CBS acting up.

11. Socialize. Try to stay engaged in conversation with friends and family. Reach out and talk to someone (even when you prefer to be alone).  

12. Join a support group, such as Charles Bonnet Syndrome Society (Facebook group)  

Our mother is learning to live with this condition. She is strong and resilient. She now feels comfortable telling people about what her life is like. She proudly educates healthcare professionals about CBS. Her friends continue to support her and show compassion. She still experiences CBS frequently and had a recent ER visit related to her hallucinations. We were relieved when the EMTs knew about CBS. Her new Retina Specialist and Primary Care Provider have also been incredibly supportive and have researched the condition to help her. We hope that sharing our story will help others to better understand this uncommon condition (FACT: 10% of visually impaired experience CBS symptoms).

For more information on Charles Bonnet Syndrome:

https://www.charlesbonnetsyndrome.org/

https://www.retina-specialist.com/article/when-blindness-induces-hallucinations

https://www.hinsdaleeye.com/about-us/latest-news/241-visual-hallucinations-it-could-be-charles-bonnet-syndrome