What is Charles Bonnet Syndrome?

Charles Bonnet Syndrome (CBS) is a condition which causes people who are losing their sight to see things that aren’t there. These hallucinations appear to exist in the real world and can range from simple patterns, shapes or colours, to vivid detailed pictures of people, animals, objects or buildings.

Charles Bonnet Syndrome often develops in the first few weeks or months following a deterioration in your sight. This loss of sight means that your brain isn’t receiving as much information from your eyes as it used to so it responds by filling in the missing information with fantasy patterns or pictures.

Even if the visions themselves aren’t frightening it can be very alarming when they first start happening. Some people fear they may be developing a serious mental health problem or dementia and therefore may be reluctant to tell their family or friends what they are experiencing.

The hallucinations can also cause practical problems by distorting the ground or the environment around you. These complex hallucinations can make it difficult to judge your surroundings and make you feel anxious about moving until the hallucination has passed, which could be a few seconds or even as long as a day.

Is there any treatment?

There is currently no cure for Charles Bonnet Syndrome but there are a few things you can try which may help to manage the hallucinations. For some people, simply knowing that the hallucinations are caused by sight loss rather than being a symptom of a physical or mental health illness can be hugely reassuring.
When a hallucination starts, you could try the following techniques to see if they help:

• Stare directly at the image and blink rapidly or reach out to touch it.
• Move your eyes from left to right for 15 to 30 seconds without moving you head. If this doesn’t work immediately have a rest and try again up to a maximum of five times.
• Change the lighting conditions that you’re in when the hallucination occurs. So for example if you’re in a brightly lit room, switch off the lights or go into a darker room. If the hallucination occurs when you’re in a dimly lit area, try turning on the light or opening the curtains.
• Change what you’re doing when the hallucination occurs for example get up to switch on the TV or move into another room as long as you can safely judge your surroundings.
• Try to get plenty of rest – the hallucinations can be worse if you’re tired or stressed.

A rise in cases

Charles Bonnet Syndrome is thought to affect about 30% of people living with sight loss. However, the hallucinations can be triggered by anxiety, loneliness and stress meaning there has been a rise in the number of people experiencing CBS hallucinations following the pandemic.

What support is available?

The charity Esme’s Umbrella was set up to raise awareness of Charles Bonnet Syndrome. It has encouraged local telephone support groups called Esme’s Friends to be established for people to talk about their experiences. Sensory Solutions in Plymouth are running a telephone support group that is open for people in Cornwall to join. For more information, contact Julie Lewis from Sensory Solutions on 01752 201899