A man from Northern Ireland has discovered a rare condition he suffers from, which causes hallucinations due to vision loss.
Charles Bonnet syndrome occurs when the brain tries to fill in the gaps in visual information with imaginary images or patterns. Hallucinations vary from person to person and range from simple lights or patterns to complex images, but are often disturbing.
Derry man Billy McElroy knows full well how frightening can be the hallucinations recently highlighted in the Coronation Street story starring the character Johnny Connor.
The new story shows how Weatherfield resident Johnny begins to hallucinate cockroaches, cats and people. Although its symptoms are caused by vision loss, they were initially misidentified as a psychiatric issue.
Billy suffers from an eye condition called Lebers disease, also known as Leber’s hereditary optic neuropathy, which affects his central vision. At the time of his diagnosis five years ago, his eye specialist told him that he was likely to experience illusions or hallucinations at some point because his eyesight was deteriorating due to Charles Bonnet syndrome.
Speaking about his experiences, the 59-year-old admitted that the situation was “difficult to resolve” at first, but he is glad to know what it is all about.
“An eye specialist told me that I would experience it at some stage. Where your brain thinks you see something, but there is no illusion [as your mind tries to replace what you can’t physically see].
“It was hard to deal with right away, it’s very insane, but at least I knew what it was.”
Explaining how hallucinations affect him on a daily basis, Billy said, “Like, I have patterned wallpaper in the bedroom and when I wake up in the morning and look at the ceiling, the ceiling that I know is white is the same as the wallpaper. When I go out in the bathroom I have same experience, even though the walls are light blue, it’s all a pattern of paper I saw in the bedroom.
“The second time I saw the machines through the window and all these amber flashing lights on the top of the truck and all these animals that ran out. You even hear parts of the sound of the machines, but the whole thing you think relates, it’s not really there.
“Or you could see two boys in Victorian clothes and two ladies in that corner with Victorian clothes in that corner. They would just fall apart. It was like you were on a star road. Then maybe two or three days later you could come back.”
Although sometimes a terrifying experience, Billy admits that he has learned to deal with them knowing he has the correct diagnosis.
“Hallucinations could last up to half an hour, sometimes up to two days for me. Maybe at some point you might get scared and it could be with you for two days in a row. I can leave you slowly.
“If they hadn’t told you what those hallucinations were, you’d really be thinking,‘ Am I going to go crazy here? “At least once they tell you about Charles Bonnet syndrome and it’s the cause that it can come and go at any time, just learn to experience it and live with it. I haven’t had any illusions in a while, but at least if they come back, I’ll know about what is being done. “
The Royal National Institute for the Blind (RNIB) warns that permanent restrictions on locking and coronavirus could cause a sudden increase in hallucinations due to vision loss.
Over the past 12 months, there has been an increase in the number of people who have called the RNIB Vision Loss Counseling Service to report CBS – with sharp highs in calls corresponding to coronavirus restrictions. Last month, the number of calls about hallucinations increased by more than two-thirds (67 percent) compared to January 2020 and recorded more calls than any other condition, including common complaints such as cataracts and age-related macular degeneration.
Dr Louise Gow, RNIB’s eye health expert, said: “The increase in the number of calls and emails we have received about CBS since the lockout has been dramatic. And the visions that are reported are much more vivid than usual, which is why many people felt especially upset – describing their hallucinations as “out of control”.
“It is as if the stress and anxiety of the coronavirus, as well as the limitations that resulted from it, affected the symptoms in humans. Although there is currently no research to confirm such a link, it seems that stress and lack of stimulation can increase symptoms. “
To help people with this condition, RNIB has launched a new talk and support service specifically for people who have CBS. Created with CBS specialists Esme’s Umbrella, the service sees small groups of blind and partially sighted people who meet regularly by phone or online for peer support
Anyone with vision loss who experiences vision or hallucinations – or any sudden change in vision – should seek immediate help from an eye health professional or contact the RNIB helpline on 0303 123 9999. For more information, visit the RNIB website.