Charles Bonnet syndrome (CBS) causes people who have lost a lot of vision to see things that aren't really there. Because any eye condition that causes sight loss can trigger CBS it's a common, though little talked about, condition.
Charles Bonnet syndrome - Jeff's story
Jeff Stockwell, who lost his sight very recently, suffers from CBS and he told us:
"One night I saw an old lady dressed in Victorian costume at the bottom of my bed and at first I thought it was a ghost or that it might be the end of a dream, but I started to see her regularly. I also saw the face of a man, just his head, floating in front of my eyes.
It was really scary and I thought I was losing my mind but I was worried about saying anything to anyone. I thought that if I went to my doctor and told him I saw a person who wasn't really there at the end of my bed he'd say 'Oh you're mad, off to the nut house boy, you're crazy'.
I belong to an RNIB telephone group and mentioned my fears to them. One man in the group said 'Oh that's Charles Bonnet syndrome - it's very common in people who are losing their sight.' He sent me some information and I learned that it's to do with the brain not coming to terms with your loss and filling in the gaps. It was such a relief to know it was a recognised condition and I wasn't going mad."
Further information about Charles Bonnet syndrome (CBS)
The most common symptoms of CBS include seeing:
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simple, repeated patterns of grids, shapes or lines
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complex hallucinations of people, objects and landscapes.
These hallucinations may be in black and white or in colour and they may move or stay still. The length of each hallucination varies from person to person. Some people have them briefly, for seconds; others experience them for much longer periods of minutes or even hours. The hallucinations usually stop within 18 months as the brain becomes accustomed to the sight loss. If there is another sudden drop in vision they may return.
There is no cure for CBS but many people find that talking about the hallucinations, understanding they are the result of a recognized medical condition and not a sign of deteriorating mental health, and working out a way to deal with them can help a lot.
We explain more about this condition and how to deal with it in our 'Understanding series' of eye health information leaflets. You can order a free copy, in Braille, audio or print formats, by calling our Helpline on 0303 123 9999.
What would you lose if you lost your sight?
When you lose your sight you can lose more than just your ability to see. It can feel like your world is falling apart.
Around 2 million people in the UK are currently dealing with sight loss and every 15 minutes it will start to happen to someone else.
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