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Alex Patterson, a resident of Ballymoney, began experiencing vivid hallucinations approximately 15 years ago. These included sights such as insects crawling on his food and, more strikingly, a tiger casually walking down Royal Avenue in Belfast. Though unsettling, these visions are symptoms of Charles Bonnet Syndrome (CBS), a condition that affects people who have already suffered from sight loss. Elaine Orwin from Bangor has also encountered visual hallucinations, such as dark clouds descending from her kitchen ceiling and bright, colorful glitterballs, experiences that she has had since childhood.
Charles Bonnet Syndrome is frequently under-recognized and under-reported across the UK, leaving many individuals without a formal diagnosis. Experts, including Professor Tunde Peto from Queen’s University Belfast, explain that CBS occurs when the brain attempts to compensate for the loss of visual information. “The brain is trying to fill in what they don’t have or don’t see any more in those conditions and they generate images, or pictures. The brain doesn’t like having empty spaces,” Peto said. This mismatch between the brain’s expectations and the reduced visual input can lead to hallucinations.
Elaine’s hallucinations first appeared during childhood, triggered by stress or fatigue, but she was only diagnosed in her 30s. She recalls the frightening experience vividly: “I would be sitting in a room and suddenly these dark clouds would come down, right down.” The hallucinations felt intensely real to her and even caused her to lose peripheral vision temporarily. Despite the absence of a cure, Elaine has developed strategies to cope with the condition and emphasizes the importance of awareness: “Now I know and acknowledge what it is, it makes it much easier and that’s why I’m hoping other people who are suffering in silence will come forward.”
Alex, who is severely sight impaired, has also adopted coping methods such as blinking, looking away, and controlled breathing to manage his hallucinations. His guide dog, Angus, serves as an essential indicator during episodes — Alex trusts Angus’s calm behavior as reassurance that the visions are not real. He stresses that CBS is not a mental health disorder: “This is not a mental health issue. In layman’s terms – and I can barely see at the best of times – it’s my head and my eyes trying to communicate and the communication is leaving blank spaces, so there’s hallucinations.” Both Alex and Elaine highlight the need for better public understanding, with Alex urging, “We need to talk about it. If you have any concerns, just pick up the phone.”
Professor Peto notes that many individuals with CBS do not report their symptoms due to fear or misunderstanding, but receiving a diagnosis often brings a “great relief.” She emphasizes the importance of healthcare professionals in identifying the condition to prevent misdiagnosis, particularly in primary care. According to the Royal National Institute of Blind People (RNIB), research indicates that about one in five adults with sight loss develop Charles Bonnet Syndrome, which equates to at least one million people across the UK. While there are no specific statistics for Northern Ireland, an awareness event is planned at Stormont, where patients, healthcare workers, and politicians will discuss the growing need for education on CBS, particularly as the population ages
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