Living with Charles Bonnet syndrome

Post date: 
Monday, 2 October 2017
Photo of Padma

Charles Bonnet syndrome, known as CBS, is a common condition among people who have lost a lot of their sight. 

It causes hallucinations among some people, but these hallucinations are not related to mental health problems. Instead, they happen because the brain is not receiving as much information from the eyes as it used to, and the brain fills in these gaps by creating new fantasy pictures or patterns.

Community members Padma Cheriyan and Hussein Patwa both have CBS. They tell us how they have experienced this curious and sometimes frightening phenomenon.

Padma’s story

“Hello. I’m Padma Cheriyan from Milton Keynes. I lost my sight very gradually. I was registered as blind in January 1996, but I started losing my sight several years before that. I was diagnosed with cone dystrophy and macular degeneration. 

“When I was registered as blind, that word had a terrible impact on me. These hallucinations started afterwards when I was just going through the trauma, trying to come to terms with losing my sight, my driving licence and my job.

“Perhaps that had something to do with it. When I walked down the street on the pavement, I used to see a racing car driving past me, very close. I could have touched it, it was so real, and it frightened me. People must have thought I was going mad, running away because I was trying to avoid this car. 

“I saw my rehabilitation officer and told him about these hallucinations. He said when you are in the street and it happens, try to grab whatever you have in hand, like a handbag or a book or something, and hold it tight. My balance used to be affected because when I saw something coming at me at speed, my feet became wobbly. That tip saved my life. Since I started following it, that particular hallucination stopped.

“The worst part of these hallucinations was that there was no prior warning that they would happen, so I couldn’t prepare myself and I was afraid of going out. I understand quite a lot of people have this problem, but rehabilitation officers should tell the newly registered person it need not always be scary. For some people, the hallucinations are quite pleasant.

"Now I experience something different. Sometimes when I open a door at home, I see a tall Arabic man in his white robes and headgear. I hate opening even internal doors at night because this is frightening.

"People don’t want to talk about CBS, because they think I’m going mad and take it as a mental illness. Isolation is bad enough, but not to be able to speak to someone about CBS is worse.”

Photo of HusseinHussein’s story

“My name’s Hussein Patwa. I’m in my early 30s and I’m from Aberdeen. I have retinitis pigmentosa (RP), which is congenital.

“I still have a little bit of sight out to the side, but no central vision at all. Normally, with RP, it’s the peripheral vision that goes first, so that makes for some quite interesting challenges.

“It’s been about three years since my vision reached a point where it started to become a problem. Before that, I was a lot more mobile and able to manage by myself.

“I’m told that everybody’s CBS is different and, for me, it’s just having wavy lines in front of my eyes that overlap what I would be able to see.

 

“I never used to have it much in the daytime, so I don’t suppose it really came to my attention that much. But I do remember when I was younger lying in bed at night and I’d have these lovely wavy floaty lines in my eyes, and I could almost pretend that I could make them into shapes or patterns, which I thought was pretty cool.

“It’s a problem if I’m trying to cross roads. The lines will sometimes get in the way and I might not see that there’s a car until the line has moved away. 

“I’ve heard that some people can see complete pictures and colours. Mine hasn’t ever been like that, so in that respect it’s never really blotted out my vision completely.

“If you’re going through CBS and it's got to the point where it has become a safety issue – for example, if you’re walking down the street and see buildings appear out of nowhere – that is the time to seek some help.”

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