Imagine living with daily hallucinations. Here’s what you need to know about Charles Bonnet Syndrome.
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If you looked out your window and saw horses with bird heads, scribbles on a cat, or buildings that weren’t really there, would you think you were going mad? Two WYZA® generation Australians open up about life with daily hallucinations to raise awareness of a common medical syndrome that is caused by vision loss.
Ian Lawther, 68, hasn’t seen out of his left eye for more than a decade, yet surprisingly the retired carpenter and grandfather from Victoria lives a life full of vivid imagery.
About 15 years ago, Ian started bleeding from his eye and received emergency surgery for acute glaucoma – a disease that’s caused by severe, rapid pressure inside the eye.
Sadly, complications from the surgery left Ian with permanent vision impairment in one eye. From then on, life was very different for Ian – he packed up his tools, gave up his driver’s licence, and was forced into early retirement. In the midst of all this, something odd and unexpected started to happen.
“A couple of weeks after the surgery, I noticed I was seeing things,” Ian recalls. “At first I didn’t think anything of it but then they got pretty persistent.”
“I’d see buildings that weren’t there. I’d see cows with greyhounds’ heads, and horses with birds’ heads,” he reveals.
“They were sort of just flashes in my mind, but very, very real.”
Naturally, Ian assumed these unbidden visions could only mean one thing. “I thought, ‘I’ve got to see somebody about this, I’m going mad’.”
Ian says he mentioned the hallucinations to a few GPs during routine visits, however each time his concerns were dismissed.
One day, Ian was working in a shed with a close friend when, he looked out across the paddock green, and started seeing things again. He told his friend he was concerned about the visions and that he thought it was related to a psychological or mental health issue.
Later that night, his friend looked up the symptoms online and discovered Ian had got it very wrong – Ian wasn’t losing his mind, rather he was experiencing a common, yet rarely discussed, condition called Charles Bonnet Syndrome.
What is Charles Bonnet Syndrome?
- CBS occurs in people with severe vision impairment, such as those with macular degeneration.
- Hallucinations, also called ‘phantom images’, vary in type and duration from person to person. Images range from basic shapes or dots, to more complex images of people, animals or objects.
- Research shows up to 30-40 per cent of Australians with vision impairment experience hallucinations; however the condition is under-reported.
- A fear of ‘going crazy’ is a common reason why sufferers don’t report the symptoms or seek diagnosis.
Any experiences with hallucinations should be discussed with your doctor
Scot Muirden, Director of the Charles Bonnet Syndrome Foundation in Australia, says up to 80 per cent of all people living with the condition let fear hold them back from disclosing their symptoms to family members or health professionals.
“They are worried that people will ridicule them, or people will think they have a psychological illness,” he says.
“However, even though they’re seeing mental images, there’s nothing wrong with them. It’s like an ‘amputation of the visual system’,” Mr Muirden explains. “With vision loss, the visual part of the brain is getting far less information than it used to and that part of the brain is getting restless, and because it gets restless it becomes overactive. . . that’s what’s causing the images.”
According to Mr Muirden there is greater need for awareness at both community and health professional levels. “There’s a void. No one’s talking about it in the general community, and health professionals tend not to ask about it.”
How it’s discussed can also have an impact on the individual. “If the health professional doesn’t ask in the correct way they’re [the patient] going to get defensive,” explains Mr Muirden.
“If you ask, ‘Do you have visual hallucinations’, most people will tend to say no because the word is typically associated with mental illness. There are less intimating ways to raise the topic.”
Once the individual has reassurance that they are not losing their mind, some people actually enjoy the experience, he says. “It’s the quirky side of vision loss.”
This is certainly the case for Perth resident Claire Menkens, who realised she had CBS after chatting to an optometrist.
“I see the printed word,” exclaims the 84-year-old. “I happen to be looking at the wall and all of a sudden there’s all this print on the wall, and on the fan, and on the sheet and on the cat,” she adds. “I find myself fixated on it, staring at it. And finally, when I shut my eyes or shrug my shoulders it clears.”
Claire says she was never frightened of the images but she felt reassured after talking to the optometrist. “I had never heard of it [CBS]. It was nice to know it exists and I wasn’t going mental.”
“It’s not threatening, it’s just kind of silly,” she adds. “I can’t make out the words, but they’re usually in black print, English script form.”
The words started appearing a short while after Claire was diagnosed with macular degeneration, a condition that left her blind in one eye, and with declining sight in the other eye.
Julie Heraghty, CEO of Macular Disease Foundation Australia, says macular degeneration is one of the major causes of CBS. “About 30 per cent of people with vision loss experience phantom images or visual hallucinations.”
Alicia Thompson shares her vision loss experience
There is no cure or universally recognised medical treatment for CBS, however Ms Heraghty says educating people on the issue and encouraging open communication will lead to better health outcomes. “Across Australia there are people who have already lost sight or are losing sight and it’s important to get them the right information.”
Where to get more help:
- Charles Bonnet Syndrome Foundation
For support, factsheets and general advice visit their website or contact their support line on 1300 121 123.
- Macular Disease Foundation Australia
For support, factsheets and general advice visit their website or contact their support line on 1800 111 709.
- Healthcare Professionals
For medical advice contact your ophthalmologist, GP, low vision specialist, counsellor or psychologist. A good idea is to print out a CBS factsheet, or ask a family member or friend to do this for you, and take it with you to your medical appointment.
Have you or someone you love experienced Charles Bonnet Syndrome? Join the conversation below.