Do you have diminishing sight and are you seeing images which could not possibly be there?
If so, you may have developed Charles Bonnet Syndrome (CBS). This is a natural and very common condition (an estimated 1 million people in the UK) which causes people of any age – children too – who have lost over 60% of sight, to experience vivid, silent, visual hallucinations. These can range from disturbing to terrifying. It is NOT a mental health condition.
It happens because the messages which wing their way constantly from the retina in the eye to the visual cortex in the brain slow or stop – but, for some reason we still do not understand, the brain then fires up and creates its own images. What you see depends on which part of the brain is firing.
During lock-down we heard from many people for whom CBS was exacerbated by the isolation and stress. Images seen became more frightening. Fever, too, can make the hallucinations worse. It is always worth asking your GP to check the side effects of any medication you are taking because sometimes hallucinations are one of them. Another brand might help the situation.
If this is happening to you – or a member of your family – please talk to your optometrist who will be able to reassure you. Esme’s Umbrella will give you information about CBS, coping strategies and a link to a telephone support service called Esme’s Friends, which offers you the chance to exchange CBS experiences with others who live with the condition. Knowing that you are not alone goes a long way to alleviating the hallucinations. If the condition is particularly troubling, there is medication which can be suggested to your GP.
Far too few people – both in the healthcare profession and in the community – are aware of CBS. Consequently, if an appointment is needed with a GP or hospital doctor, it is wise to take the printable information from Esme’s Umbrella’s website or one of the booklets.
We know the outcome is so much better when the person is aware that the hallucinations do not mean that a mental health condition has appeared.
Judith Potts is the Founder of Esme’s Umbrella, which is the campaign to raise awareness of Charles Bonnet Syndrome and to source funding for research into this extremely common but little-known condition.