HELPLINE: 020 7391 3299 – answered by The Eye Health Team at the RNIB, in conjunction with Esme’s Umbrella.
Sight loss itself can cause anxiety, fear and loneliness, but when CBS is added, the isolation – even from family members – can exacerbate the downward turn in quality of life. Confiding in someone about the hallucinations and how they make you feel will help. Your local low vision charity may be running an Esme Room Support Group, where people with CBS can meet to exchange experiences over a cup of tea.
Professional counselling is proving successful for some people.
Mindfulness therapy is being explored at some of the Esme Room Support Groups www.nhs.uk/conditions/stress-anxiety-depression/mindfulness/
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.
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 as ginger may interact adversely with certain medications. Similarly, omega 3 supplements may be of help.
Establish whether or not the hallucinations occur more often in a particular room or part of the garden.
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.
Trying to avoid the appearance of a sudden object, animal or person, can result in falling over a real piece of furniture. If in doubt as to what is real and what is not, the following strategies might be of help.
- 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.
- At night, try wearing a thick eye mask
- Blink your eyes slowly once or twice – or
Try this 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.
If you find the hallucinations completely impossible to tolerate, please contact your GP. Not all doctors are aware of CBS, so, take this information with you.