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Managing your 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 living with Charles Bonnet Syndrome, she had instinctively found a way to disperse the hallucination. Not so easy when the whole room disappeared and she found herself transported to a distant shore – or a funeral scene played out in the garden.

Coping Strategies

It can be extremely distressing to have your life disrupted constantly by vivid, silent, visual hallucinations. There are measures which can be tried to dispel the hallucination when it occurs. However, everyone is different and some strategies work better than others. If the hallucination does disappear at that moment, it may return later.

  • Reach out towards the hallucination, try and touch it or sweep your hand to brush away the image.
  • Shine a torch upwards from below your chin in front of your eyes (NOT INTO THE EYES).
  • 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.
  • Change the 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.
  • Clap your hands or click your fingers
  • Sing or whistle
  • At night, try wearing a thick eye mask
  • Blink your eyes slowly once or twice – 

Eye-movement exercise created by Professor ffytche

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.

Esme’s Friends

These are telephone or online chat and support groups, hosted by local low vision charities. Contact Esme’s Umbrella for your nearest one.

Professional counselling

If more than a chat with others is needed, Esme’s Umbrella can refer you to professional counsellors working with the campaign. This is one-to-one and can be on the telephone or on-line.

The Macular Society offers group, telephone counselling for people with CBS.

Complementary therapies

Mindfulness therapy and massage are being explored by people with CBS, as a way of coping with the hallucinations.

CBD oil (the legal variety) may help some people.

Using real ginger in food and drink – ginger ale/tea/biscuits etc – has been found to be helpful to some people. However, it is imperative to check with the doctor first as ginger may interact adversely with certain medications. Similarly, omega 3 supplements may be of help.

 Falling or tripping over

Trying to avoid the appearance of a sudden object, animal or person, can result in falling over a real piece of furniture. Please check the area around you with a cane or walking stick before you move.

Medication

There is medication which can be tried to alleviate the hallucinations. This does not work for everyone and is not CBS-specific, but used for other conditions like epilepsy and dementia. Using these medications does not mean you have developed another condition, it is simply that they have been found to work for some people.

There is case-report evidence for treatment with anticonvulsants, cholinesterase inhibitors, 5HT antagonists (ondansetron), selective serotonin reuptake inhibitors, atypical neuroleptics, Yi-Gan San (a Chinese traditional medicine with multiple neurotransmitter effects), proclorperazine (a drug once used for schizophrenia, but now often used for labrynthitis and other ear conditions – this is not for long term use). Trans cranial direct current stimulation of the brain has proved very successful, but is not available on prescription in the UK.

Medications which have visual hallucinations as side effects

It is known that these medications can exacerbate the episodes of CBS. 

If you are already taking one of these medications, please DO NOT STOP. Discuss this with your GP, who might not be aware of this side effect.

Tricyclic antidepressants, gastric ulcer medication (drugs like omeprazole), urinary incontinence medication and atropine eye drops.

Tips

We know that the hallucinations are often worse during a quiet time, so keeping the brain/mind active may help to keep the hallucinations at bay.

Establish whether or not the hallucinations occur more often. in a particular room or part of the garden. 

Isolation, stress and fever exacerbate the episodes of CBS and cause the person to see images which are much more frightening.

What images do people see?

Patterns, colours, grids, words, maps, numbers, musical notes, colours, which cover everything in the room. People – either real-size or tiny – often dressed in military uniform, medieval, Tyrolean or Edwardian costume; sometimes faceless. Armies, processions, groups or one solitary person. Children – a wandering child in costume, children in groups or babies. Gargoyles, gremlin-like creatures or distorted faces. Animals, insects, snakes, rodents, frogs, fish – real-size or not. Worms and slugs on food and in drink. Water and fire. Buildings, doors, walls, furniture. Vehicles of all types. Plants, flowers, grass or trees. Whole scenes.