One of my colleagues came to see me as he wanted a second opinion.  That morning, a woman had called and asked for an appointment for her mother as her mum was experiencing flashing lights and floaters.  My colleague (who does domiciliary visits) had gone to see her that day as he suspected a retinal detachment but when he arrived, the truth was a bit… well, stranger.

The lady, who was battling cancer and had limited mobility, described seeing vases with arms and disembodied heads wearing hats.  Her daughter had invented the flashes and floaters, apparently.  She wanted her mother seen as soon as possible and, I think, also suspected we would think her mum had a touch of dementia if she’d told us the truth.

My colleague wasn’t familiar with Charles Bonnet syndrome and had popped in to ask me what I made of it all.  In the end, I went back to the lady’s house with him and explained Charles Bonnet to her, her husband and her daughter: after a sudden decrease in central vision, her brain was filling in the spaces with some weird and wonderful things.  The good news was that the hallucinations were not frightening or disturbing to this lady – she viewed them with a detached curiosity, probably because of the medication she’d been prescribed for her pain.

This experience got me thinking about Charles Bonnet syndrome and the different stories I’d heard from patients.

One of my patients told me about a day out with her father (who had wet AMD in both eyes).  They had went to the botanical gardens in Glasgow and were walking around outside.  Suddenly, her father stopped and started staring at a hedge.  My patient looked at the hedge – probably one of the most boring, rectangular hedges in the gardens.  She had asked her father what he was looking at and he replied, describing beautiful flowers that were growing out of the hedge.  The detail he gave her was astounding and she was a little concerned that he was “seeing things” but she’d went home and found information on Charles Bonnet and that put her mind at ease.

Another patient told me about her brother who is now registered blind (he is also one of our housebound patients and she’d popped in that day to get her brother’s specs fixed).  When she goes to visit, he describes what’s happening in all the rooms of the houses around him, as if he can see through walls.  There’s always something going on, a table being laid for dinner or a family playing charades.  She assumed he had a very active imagination.

Yet another wet AMD patient described to me being able to see through the wall in her bathroom, out into the street, where two young girls, dressed in old fashioned white dresses, were playing.

An older man told me about looking out his window sometimes and seeing, clear as day, his brothers (who have all passed away) looking in at him.  He told me it was wonderful to see their faces again and all looking so young!

None of the VIPs mentioned seemed distressed by these experiences.  In fact, I would go as far as to say this phenomenon is comforting for some of my patients living with central vision loss.

On the other hand, I’ve heard of people seeing strange men standing in corners or spiders covering a wall which would obviously be frightening for anyone.  The best thing we can do for those with central vision loss is to educate both them about Charles Bonnet syndrome and to reassure that, although the experience is vivid and can be distressing, it is not a symptom of mental illness.  By including the family in the dialogue, we are increasing the chances of a patient confiding in someone about the experience and feeling less alone.