“Oh, thank goodness, I thought I was going crazy.” This is a typical response that people give when told that the hallucinations they are experiencing have a name – Charles Bonnet Syndrome – and occur frequently to people who have lost significant amounts of vision. In fact, studies have shown that anywhere from one third to 60 per cent of people with severe vision loss experience visual hallucinations, images that aren’t really there. These illusions appear quite real to the person experiencing them and can often seem very strange. The good news is that they don’t last forever. They usually decrease in frequency after about a year to 18 months.
At this stage we do not know exactly why these images appear, but researchers are beginning to understand this phenomenon better. It appears to be related to an attempt by the brain to fill in information that it would normally obtain from one’s eyes.
In general, people find it easier to live with this condition if they know that it is not a reflection of their mental health. There are, however, other conditions that affect the brain that may cause hallucinations. It is important for your doctor to rule these possible causes out before confirming a diagnosis of Charles Bonnet Syndrome.
There is no cure for Charles Bonnet Syndrome, but there are coping strategies that make it easier to live with. Many people find it helpful to tell their friends about their illusions or to discuss it with other people who are experiencing the same condition. Hallucinations may take many forms and there are a wide variety of strategies for making it easier to cope with these different types of hallucinations. These strategies are described extremely well on the website of the Royal National Institute of Blind People (RNIB), available at the following link: http://www.rnib.org.uk/eyehealth/eyeconditions/conditionsac/pages/charles_bonnet.aspx
You can also get advice as to how to cope with Charles Bonnet Syndrome by talking to a CNIB vision rehabilitation specialist. To do this, or to get more information, contact your local CNIB office.
One strange aspect of Charles Bonnet Syndrome is, although it occurs relatively frequently in people who have lost vision, that few people have heard of it. By talking about it, you in turn will be helping others who may not understand why they are seeing things.
I hope that this blog helps you feel that you are not alone in experiencing visual hallucinations and that they are a normal aspect of losing vision for many people. No, you are not going crazy.