Charles Bonnet Syndrome Awareness Day 2024: Your experiences

“I first noticed something different about three years ago when I saw images of patterns, and a properly constructed brick wall. The weirdest thing was when I was looking at the television and I saw my father's face above the television on the wall. That was a bit weird because he had passed away but when I saw his face it made me feel pleased that I could see him, so I enjoyed that vision.

“Then on the way to a restaurant I could see two angel figures in a treetop and they were dressed in beautiful green satin dresses. I could see their wings and I thought ‘oh gosh, don’t beckon me yet’ and they drifted away. They were fantastic to see, really unbelievable.

“Yes, it’s weird to have these experiences but I’ve got used to them to the point where they don’t bother me at all. They bring me amusement. And I think that’s because I’m not a very serious person, I’ve got used to them, I know they aren’t bad and actually I found them quite amazing.

“But finding out more about Charles Bonnet Syndrome probably helped, because that was really reassuring for me.”

“I was in hospital for an unrelated issue and I was feeling very groggy and really struggling to sleep. One night I looked over to see a woman in her bed opposite me and I thought she must be very ill because she had someone visiting her overnight. I saw this person by her bedside for three nights running; a youngish person wearing a baseball cap and a university-style sweater so I assumed it was her grandson.

“After a few days she was a little better so I asked if that was her grandson who sits with her at night? She stared at me blankly. Two nights later I saw it again so I got out of bed to go and have a look. As I got closer it was just part of the shape of the machinery on the ward, and my brain had put the rest of the image together.”

“At the moment, I'm seeing repeated patterns. I’ve mentioned it during my checkups and I know it’s nothing to worry about.

“I'm not worried by them, or when these happen but I think a lot of people probably are, understandably. I think it's education and knowing what Charles Bonnet syndrome is but we should talk about these things immediately, because as soon as you start talking about it between ourselves, it suddenly it becomes normal, doesn't it?”

“I would get up in the night and as soon as I put the light on, before I got out of bed, I would look up at the ceiling and I could see enormous shapes up there - big and littles ones. They followed me to the bathroom. It sounds ridiculous, it's kind of like an illusion and people can all see all sorts of different things so they can be very scary when you first get them.

“When I first saw this infestation of flies in my home, and I know they were flies because they had wings unlike floaters, I was trying to catch them in my hands. My daughter was there, we were having a meal and I was banging the table to try to catch them. She told there was nothing there, but to me I could see them crawling about.

“With the patterns, that was very frightening because it’s scary to see these things. You think your mind's going silly, especially when you get to my age.

“You do think you're going a bit funny in your head, it's a horrible feeling. It is really worrying but I found our monthly Macular Society group to be very knowledgeable about things like this, and we have had a talk about Charles Bonnet hallucinations, so I found that particularly very interesting.”