Coping strategies for Charles Bonnet Syndrome

When my Mother, Esme, first confided in me about her ‘visions’ – as she called them – she told me that the faceless people on her sofa disappeared if she tapped them on their shoulders.

Although totally unaware that she was suffering from Charles Bonnet Syndrome, she had instinctively found a way to disperse the hallucination. Not so easy was it when the whole room disappeared and she found herself transported to a distant shore - or a funeral scene played out in the garden.

When the hallucinations were of people or gargoyle-like creatures, Esme found that sweeping her hand to brush away the image or reaching out and touching it worked. We talked about the need to ‘shunt the brain into another gear’ to remove the hallucination – but only temporarily.

Dr Dominic ffytche – Medical Adviser to Esme’s Umbrella and the acknowledged expert on CBS in the UK – explains “We know that the hallucinations occur when people are in a state of quiet wakefulness, sitting in a chair and maybe listening to the radio or television”. Many sufferers find their quiet wakefulness moments are when they are being driven in a car – please click on ‘View All Stories’ to read Graham Stephens’ experience of CBS.

Some general ‘brain shunting’ strategies to help stop hallucinations when they occur:

  • If sitting, try standing up and walking round the room. If standing, try sitting.
    Walk into another room or another part of the room.
  • Turn your head slowly to one side and then the other. Dip your head to each shoulder in turn.
  • Stare straight at the hallucination.
  • Change whatever it is you are doing at that moment – turn off/turn on the television/radio/music.

Other strategies target the brain regions involved in hallucinations. These include:

  • Changing light level in the room. It might be the dim light that is causing the hallucinations. If so, turn on a brighter light – or vice versa.
  • Blink your eyes once or twice.
  • A specific eye-movement exercise. When the hallucination starts, look from left to right about once every second for 15 seconds without moving your head. If the hallucination continues, have a rest for a few seconds and then repeat the eye movements. You may need four or five repeats of the eye movements to have an effect but there is no point in continuing beyond this if there is no benefit.
  • Shine a torch upwards in front of the eyes – NOT INTO THE EYES – and the light stimulates the cone cells so the brain switches off the hallucination.

It is very hard and extremely wearing to have your life disrupted constantly by hallucinations – particularly if it is not easy to decide whether or not the image is created by your brain or is real. If you are in unfamiliar surroundings, please check the area before you move – just in case the dog/cat/person is not an hallucination.

If you find the hallucinations completely impossible to tolerate, please ask your GP for advice. He/she, in turn, can contact Dr ffytche, who might be able to suggest medication – it will all depend on your general health and age. However, it is worth remembering that, as with all drugs, the medication will carry side effects.

If you have any coping strategies that you find successful, please email us on esmesumbrella@gmail.com or ring the Helpline on 0345 051 3925 and leave a message. We will add your suggestions to the website.