Charles Bonnet Syndrome is the occurrence of complex, vivid visual hallucinations in people with significant vision loss. The issue has received increased focus, as it is both widespread and frequently under-identified. Although it was first observed in the 18th century by the Swiss scientist Charles Bonnet, the term wasn’t officially used until the 1930s. To date, only approximately 10 percent of the global vision-impaired population has been impacted. Yet, most of those people don’t even know it’s out there.
One such patient is Vicky Hamilton, a 74-year-old retired schoolteacher who was recently diagnosed with glaucoma. She is haunted by oncoming spectral visages, vibrant children’s drawings, dog-strolling citizenry, military men, all appearing in her apartment space. Her experiences reflect the complexities that surround Charles Bonnet Syndrome and highlight the need for greater awareness and understanding among medical professionals.
Scot Muirden, a healthcare advocate who founded Falls Stink, points out how important it is to have universal guidelines for diagnosis and treatment of the syndrome. He urges medical bodies to draw up evidence-based protocol that would save so much pain and distress of people who are affected. The inconsistency and absence of standardized practices have led to inconsistent responses from healthcare providers on how to best address patients’ visual hallucinations.
Patients Share Their Experiences
For Vicky Hamilton, her experience with Charles Bonnet Syndrome has been nothing short of confusing and frightening. For decades, she has experienced surreal phenomena that would terrify anyone, like reality itself twisting and bending.
“If I looked at people, their hair would change into very fluorescent colours,” – Vicky Hamilton
Even when the hallucinations are as weird as they sound, Hamilton recognizes that beauty can come through such experiences.
“I’d have storm clouds just appear in the sky even though it was a beautiful, clear day,” – Vicky Hamilton
Bernadette Glass tells her story, too, a story that started three years ago when she began seeing visual hallucinations. After an exhaustive few months of searching the internet for answers, she diagnosed herself with Charles Bonnet Syndrome. Her greatest terror would have been to be disbelieved when she first presented with symptoms.
“It can be very beautiful too,” – Vicky Hamilton
Muirden adds that far too many people suffer from excessive worry because they do not know enough about the syndrome.
Advocates like Scot Muirden, pictured above, are making a push for universal guidelines on diagnosing and treating Charles Bonnet Syndrome. Her ultimate goal is that by developing a more united front of healthcare practitioners, more patients will receive better, more timely care.
“This could cut out months, even years of unnecessary anxiety, suffering and silence that so many in the CBS world go through,” – Scot Muirden
The Need for Medical Guidelines
“The eye healthcare practitioners would have a large role to play here,” said Meri Vukicevic, who supports the call for guidelines. She concluded by saying that better communication and cooperation between practitioners will ultimately improve patient care.
A new meta-analysis in the Brain Research Bulletin looked at these 49 studies on Charles Bonnet Syndrome. It was the first survey to shed light on the syndrome’s symptoms and frequency of occurrence. Although this study, and others like it, exist, most healthcare providers are still unaware of how to treat the condition properly.
“We could possibly all band together and put together some guidelines that would be of benefit to all of our patients,” – Meri Vukicevic
Vukicevic said she was concerned by the lack of accessible information available to eye health professionals.
The content of the hallucinations from CBS is remarkable since they happen in psychologically healthy persons. As a long-time glaucoma patient, Theo Blue believes his condition is easy to control. He understands that older people are statistically more likely to be sensitive to its impacts.
“I am not sure how frequently this position statement is being accessed by eye health practitioners,” – Meri Vukicevic
Understanding Hallucinations in Context
He notes that for most seniors, experiencing these hallucinations can be startling, particularly if developed later in life.
“Losing my vision is all I know,” – Theo Blue
Throughout her recent TRB annual meeting presentation, Vukicevic emphasized the nuance of these experiences. He continues, annoying as they might be, these don’t actually indicate a psychological condition.
“It can be very jarring to have this come up … later in life, losing their vision for the first time,” – Theo Blue
People with Charles Bonnet Syndrome have different experiences. Given all of this, it’s evident that we need to better understand and support the unique challenges they face to improve their quality of life.
“They are hallucinations in psychologically normal people,” – Meri Vukicevic
Despite varying experiences among individuals with Charles Bonnet Syndrome, it is evident that more comprehensive understanding and support are crucial for improving their quality of life.
