Bernadette Glass said her “biggest fear” was not being believed when she started having visual hallucinations three years ago.<\/p>\n
The 74-year-old retiree lives with glaucoma and said she saw disembodied faces, dogs and people in military uniform in her home.<\/p>\n
“It wasn’t in the least bit frightening,” she said.<\/p>\n
“I knew deep down that whatever I was going through, it was not a psychiatric illness.”<\/p>\n
Ms Glass said she was “too frightened” to tell her GP, and after six months of searching for answers online, she self-diagnosed with Charles Bonnet Syndrome.<\/p>\n
When she talked to her ophthalmologist about the condition, she said she was dismissed.<\/p>\n
“All he says to me is, ‘It’s a very rare condition,’ and that was it,” she said.<\/p>\n
“There isn’t much in the way of education that was given to me, so you’re left to \u2026 look it up yourself.”<\/p>\n
<\/p>\n
Scot Muirden wants universal guidelines to diagnose and treat Charles Bonnet Syndrome. (Supplied)<\/p>\n
Scot Muirden, director of the Charles Bonnet Syndrome Foundation Australia, said the condition describes the “co-existence of two visual worlds” for people living with a vision impairment.<\/p>\n
“They may be experiencing areas where there’s blurriness, other areas of the visual field they can’t see at all,” he said.<\/p>\n
“Then suddenly \u2026 phantom images will be superimposed on that baseline.”\u00a0<\/p>\n
Fluorescent hair and storm clouds<\/p>\n
According to Mr Muirden, Charles Bonnet Syndrome hallucinations are colourful and detailed, but people “rapidly” understand what they’re seeing is not real.<\/p>\n
He said hallucinations commonly involve patterns and geometric shapes, as well as fully formed animals, vehicles, buildings and landscapes.<\/p>\n
<\/p>\n
Vicky Hamilton said she has experienced visual hallucinations for years. (ABC News)<\/p>\n
Griffith University student Vicky Hamilton said she spent a decade searching for answers to her visual hallucinations.<\/p>\n
“If I looked at people, their hair would change into very fluorescent colours,” she said.<\/p>\n
“I’d have storm clouds just appear in the sky even though it was a beautiful, clear day.”\u00a0<\/p>\n
She said tests eventually revealed a brain aneurysm was pressing on her optic nerve, following an assault she experienced two decades ago.<\/p>\n
While one doctor agreed her symptoms aligned with Charles Bonnet Syndrome, she said another downplayed her concerns.<\/p>\n
“She dismissed my visions, claiming, ‘You are seeing them because you want to’,” she said.<\/p>\n
“Before discovering the aneurysm, another doctor trivialised my symptoms by suggesting I watch a movie to feel better.<\/p>\n
“I felt that he did not believe me.”<\/p>\n
<\/p>\n
Vicky Hamilton says she received mixed responses from doctors about her visual hallucinations. (ABC News)<\/p>\n
She said discovering Charles Bonnet Syndrome made her visual hallucinations seem “less scary”.<\/p>\n
“It can be very beautiful too,” she said.<\/p>\n
Ms Hamilton said while her brain aneurysm had fully healed and her vision had improved, she still saw floating colours.<\/p>\n
Both Ms Hamilton and Ms Glass said self-diagnosis brought great relief, after years of searching for the cause of their visual hallucinations and being turned away by numerous doctors.\u00a0<\/p>\n
But both felt frustrated doctors could not give them clear answers, instead dismissing their concerns.\u00a0<\/p>\n
Condition is under-reported<\/p>\n
Charles Bonnet Syndrome was first described in the 18th century by Swiss scientist Charles Bonnet, but the term wasn’t officially coined until the 1930s.\u00a0<\/p>\n
According to Mr Muirden, a lack of awareness was causing a rise in self-diagnosis and misdiagnosis.<\/p>\n
“Most [people] have never heard of CBS,” he said.<\/p>\n
“That’s why it’s so under-reported, because the patients are terrified to talk about it, and the medical practitioner is not \u2026 asking about it.<\/p>\n
“They’re not screening for it. They’re not enquiring whether [patients] may be showing the symptoms.”<\/p>\n
<\/p>\n
Meri Vukicevic says Charles Bonnet Syndrome was “very under-reported”.\u00a0 (ABC News: Peter Drought)<\/p>\n
La Trobe University Associate Professor of orthoptics Meri Vukicevic said the condition was “very under-reported” and under-recognition was common.<\/p>\n
“The gap is big enough that RANZCO [Royal Australian and New Zealand College of Ophthalmologists] explicitly warns about it and recommends proactive screening,” she said.<\/p>\n
“Patients \u2026 are very reluctant to speak to anybody about it because of fear of being labelled insane or psychotic, which they aren’t.<\/p>\n
“They are hallucinations in psychologically normal people.”<\/p>\n
Mr Muirden said he was calling on peak medical bodies to create universal, evidence-based guidelines to diagnose and treat Charles Bonnet Syndrome, because none currently exist in Australia or internationally.<\/p>\n
“This could cut out months, even years of unnecessary anxiety, suffering and silence that so many in the CBS world go through,” he said.<\/p>\n
Ms Vukicevic agreed guidelines for diagnosis were “very important.”<\/p>\n
“The eye healthcare practitioners would have a large role to play here,” she said.<\/p>\n
“We could possibly all band together and put together some guidelines that would be of benefit to all of our patients.”\u00a0<\/p>\n
A spokesperson said RANZCO had developed a position statement on Charles Bonnet Syndrome in 2023, to provide guidance on the “diagnosis, treatment and management” of the condition.<\/p>\n
Ms Vukicevic said the statement was the “nearest thing” to a guideline eye health professionals in Australia could use, but they weren’t routinely screening their patients for hallucinations.<\/p>\n
“I am not sure how frequently this position statement is being accessed by eye health practitioners,” she said.<\/p>\n
“I suspect not very often.”<\/p>\n
<\/p>\n
Theo Blue says more awareness about Charles Bonnet Syndrome is needed. (Supplied: Theo Blue)<\/p>\n
A recent meta-analysis by Brain Research Bulletin of 49 Charles Bonnet Syndrome studies found the condition affects about 10 per cent of the vision impaired community globally.<\/p>\n
Canadian peer-support worker Theo Blue lives with glaucoma and said Charles Bonnet Syndrome was “very manageable”, but elderly people may feel more vulnerable.<\/p>\n
“Losing my vision is all I know,” they said.<\/p>\n
“It can be very jarring to have this come up \u2026 later in life, losing their vision for the first time.<\/p>\n
“It’s really important for the elderly and their doctors to be aware of what CBS is.”<\/p>\n","protected":false},"excerpt":{"rendered":"Bernadette Glass said her “biggest fear” was not being believed when she started having visual hallucinations three years…\n","protected":false},"author":2,"featured_media":121752,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[64,63,85748,85751,3871,85737,85746,85740,85753,45429,137,85739,85749,52115,85743,85744,85750,85741,85742,85745,85752,85747,85738],"class_list":["post-121751","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health","tag-au","tag-australia","tag-bernadette-glass","tag-brain-research-bulletin","tag-cbs","tag-charles-bonnet-syndrome","tag-charles-bonnet-syndrome-foundation-australia","tag-eye-damage","tag-glaucoma","tag-hallucinations","tag-health","tag-macular-degeneration","tag-meri-vukicevic","tag-optic-nerve","tag-phantom-images","tag-phantom-vision","tag-ranzco","tag-rare-condition","tag-rare-illnes","tag-scot-muirden","tag-theo-blue","tag-vicky-hamilton","tag-vision-impairment"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/121751","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/comments?post=121751"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/posts\/121751\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media\/121752"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/media?parent=121751"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/categories?post=121751"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/au\/wp-json\/wp\/v2\/tags?post=121751"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}