News You Can Use: April 2009
Learning that you have macular degeneration can be overwhelming. The diagnosis can flood you with numerous emotions ranging from fear, to depression, to thoughts like “why did this happen to me?” The first few months can be very trying as you work to sort out treatment options and find ways to cope. But did you know that approximately 10 to 15 percent of people with AMD experience something else that they will rarely admit to family, friends, or even their doctor? Certain individuals with vision loss have vivid hallucinations that range from seeing simple forms or patterns, to complex scenes and “imaginary” people. If you have AMD and this happens to you, understand that you are not alone, and you are not going mad. The problem is most likely a phenomenon known as Charles Bonnet Syndrome (CBS)—named for the Swiss philosopher who, in 1760, first described the condition in which visual hallucinations occur in psychologically normal people. Bonnet’s own grandfather, who was nearly blind from cataracts in both eyes, thought he saw people, birds, carriages, buildings, tapestries and patterns.
Out of fear, patients often fail to report these visions to doctors. But some studies suggest that when patients with significant visual impairment were specifically questioned, up to 63% admitted to experiencing hallucinations. It is important to note that those with early signs of AMD or minor vision loss are much less likely to experience hallucinations.
The theory about this condition is that CBS is often just the brain’s way of coping and making sense of vision loss. It is believed that when visual cells in the brain stop getting information, the cells will often compensate. If there's no information coming in, the brain will make up images. These images may last only seconds or minutes but can sometimes last longer. At first, most people are frightened when the images appear, and often become concerned about the status of their mental health. However, once patients understand what is happening to them, the images may just become a minor annoyance although some find that navigating their surroundings can become more challenging during hallucinations. Often, since the images are usually benign or even friendly, some people actually find them interesting and pleasant. The hallucinations often happen when people are in lying in bed at night or when sitting in a quiet, familiar place, and also occur to those who have limited social interactions. Some patients have found that they can control their hallucinations by moving their eyes or changing their environment such as standing up, walking into another room, or switching a light on or off.
It is thought that when the brain learns to adjust to the vision impairment, the hallucinations disappear. For most people, the hallucinations will stop, on average, somewhere between one year and 18 months after onset. “Doctors who diagnose advanced AMD should warn patients about this possible side effect of the disease,” says Alan Cruess, M.D. Chief of Ophthalmology, Dalhousie University and Chairman, AMDAI Science Panel. ”While there are currently no established treatments for Charles Bonnet Syndrome, simply understanding that these hallucinations are not a symptom of dementia or mental illness is a great relief to those who experience them.”
Tell your doctor about your hallucinations
Remember, you are not alone
Don’t let hallucinations scare you--try to keep a sense of humor about them
When hallucinations occur, shift your eyes, change your environment, flip on a light, etc.
Share this article with your family and friends and ask for help if needed
Stay socially active
Remember most hallucinations diminish over time and will eventually go away completely
