‘They shouldn’t be feared and it helps to talk’

Posted: Friday 16 November 2018

‘They shouldn’t be feared and it helps to talk’ - that’s the message from the Macular Society to anyone with macular disease who is experiencing visual hallucinations, as the Macular Society marks Charles Bonnet Awareness Day.

Up to half of all people with macular disease are thought to experience Charles Bonnet hallucinations at some time and many worry unnecessarily that there is something wrong with their mind. Charles Bonnet hallucinations can be simple unformed flashes of light, colours or shapes. However, many people see geometrical grids and lattices. Other people also report seeing landscaped gardens or vistas, animals, people or other vivid images.

One Macular Society member who has experienced hallucinations is Barbara Price. Barbara was diagnosed with age-related macular degeneration around 11 years ago and began having CBS hallucinations a year later. She has been participating in an NHS-funded study – Study of Hallucinations in Parkinson’s disease, Eye disease and Dementia (SHAPED) - led by Dr Dominic ffytche.

Barbara says: “I was very pleased to open up and talk about Charles Bonnet Syndrome because so many people still don’t know what it is. Some of the people I’ve spoken to have suffered very badly as a result of their hallucinations. If I can pass on my experiences to help them and others, I’m very happy to do that.

“The hallucinations I experienced were varied and could last anything from a few seconds to a couple of hours, in numerous intermittent spells over several days. I found they could be very intrusive; they come when you don’t expect it and go when they feel like it.”

She added: “The hallucinations can be terrifying, but they aren’t to be feared; you need to keep clearly in your mind that these images are not real. No-one can really understand what it’s like unless they’ve experienced it, but people need to feel someone is listening to them and will show compassion. They need to feel that they can share it; talk about it, even joke about it. The way I got through it was by talking to someone else who’d had the hallucinations too, and it really did help both of us.”

Last year, the Macular Society ran a Charles Bonnet awareness campaign, urging people who had experienced visual hallucinations to share their stories. The Society is also helping to fund a study at Newcastle University, which is looking at treating visual hallucinations in people with macular degeneration. The project is aiming to determine whether a technique called transcranial direct current stimulation (tDCS) can be used to treat Charles Bonnet Syndrome in people with macular degeneration.

If you would like to know more about Charles Bonnet Syndrome, please visit our Visual hallucinations page