Charles Bonnet Syndrome (CBS) is a common condition among people who’ve lost their sight.
It causes people who’ve lost a lot of vision to see things that aren’t really there – medically known as having a hallucination.
CBS hallucinations are only caused by sight loss and aren’t a sign that you have a mental health problem.
We’ve created a guide to Charles Bonnet Syndrome that you can download as well as some useful, practical advice.
You can also contact us directly if you’re concerned about the condition and its impact on your day-to-day life.
CBS tends to begin in the weeks and months following your sight getting worse.
The main cause of CBS is loss of vision and how your brain reacts to this loss.
Research suggests that when you see real things around you, the information received from the eyes stops the brain from creating its own pictures. When you lose your sight your brain doesn’t receive as much information and fills in these gaps by releasing new fantasy pictures, patterns or old pictures that it has stored.
Our Understanding Charles Bonnet Syndrome guide is accredited by the Royal College of Ophthalmologists.
It’s designed to give you a detailed understanding of your eye condition and helpful advice on next steps.
Bee has Glaucoma. She first experienced CBS when she was shopping. She explains the types of hallucinations she gets and how she copes.
If you start to notice any type of hallucination it’s important to make an appointment with your doctor as soon as you can.
There isn’t one test your doctor can do to find out whether you have CBS, but they can rule out other causes of hallucinations like Alzheimer’s and mental health problems.
CBS hallucinations only affect your sight, which means that you don't hear, smell or feel things that aren't there. Also people with CBS tend to be aware that what they are seeing isn’t real and they don’t usually develop complicated ideas of why they are seeing things.
By talking to your doctor about your hallucinations they should be able to rule out the other causes.
The hallucinations caused by CBS can appear in lots of ways including:
Simple shapes and dots of colours
Detailed pictures of people, animals, landscapes and buildings
It’s normal to be worried, confused or frightened when you see things that aren’t really there. It’s important to remember that CBS hallucinations are only caused by sight loss and aren’t a sign that you have a mental health problem.
When you first develop CBS your hallucinations might happen quite often, but over time they can become less frequent. For some people they can carry on for longer, and it’s not unusual if you still have an occasional hallucination some years after they first started.
Our understanding CBS guide has lots of tips for coping with hallucinations from exercises that can help to dealing with your hallucinations.
Although there’s currently no medical cure, CBS usually improves with time.
There’s no proven drug that can stop CBS hallucinations. In some cases drugs for other conditions have been tried to help people who are very upset or confused by their CBS hallucinations. These drugs are designed for people with more serious conditions like dementia or epilepsy, and are usually very strong with a lot of side effects.
Some common medications people take as they get older can interact and make your CBS hallucinations more frequent. If you’re not sure if the medication you’re taking is making your CBS worse, ask your GP.
If you download our Understanding CBS guide you can get advice on non medical ways to cope with your hallucinations.
RNIB gave me practical information about working and getting in to employment, and about how I can get the extra support to do the jobs that I want to do.
Trying to adjust after a diagnosis of CBS can seem overwhelming at first and it might involve some changes to your life.
We’re here to support you every step of the way, and to answer any questions you may have about your sight loss or day-to-day living.
Living with CBS shouldn’t mean an end to doing most of the things you like to do.
We will help you maximise your vision and make the most of the sight that you have.
If you haven’t already now would be a good time to join RNIB Connect, our connected community of everyone affected by sight loss.
Esme's Umbrella is a campaign group to build up a greater awareness of Charles Bonnet Syndrome
NHS Direct is the website for the NHS Direct health advice services, with information and advice about Charles Bonnet Syndrome