Some people who lose vision from age-related macular degeneration (AMD) or other eye disease hallucinate or see things that aren't really there.
One study found that more than 12% of people with AMD have these visual hallucinations (known as Charles Bonnet syndrome, or CBS), but the actual number may be even higher. On average, people with CBS have hallucinations, on and off, for about three years. Those with CBS tend to see multiple types of images, particularly those of people and faces.
Many of those afflicted with CBS choose to keep quiet about their hallucinations for fear they'll be wrongly seen as mentally ill. This decision to remain silent may explain why hallucinations from CBS were thought to be relatively uncommon.
Why Do People with Vision Loss Have Hallucinations?
“Patients with eye disease who have hallucinations can feel very unnerved,” says ophthalmologist and Academy member Purnima Patel, MD, a retina specialist in Atlanta. “They may feel like they are not only losing their sense of sight but also their cognitive function.”
But, Dr. Patel says, hallucinations in people with vision loss do not stem from neurological problems. Rather, they occur when brain craves new images to process. Finding none (due to vision loss), the brain resorts to making up images or recalling images from memory.
What Do Hallucinations from Charles Bonnet Syndrome Look Like?
These phantom images resulting from vision loss may be seen as:
- simple lines or shapes
- flashes of light
- or more complex images of faces, people or animals
The hallucinations can occur at any time and last for seconds, minutes or hours. Sometimes the images remain still and other times they move around. People with significant vision loss, especially loss of central vision, are most often affected.
How Do You Cope with Visual Hallucinations?
While there is no cure or treatment for Charles Bonnet syndrome, there are ways to cope with hallucinations and shorten their duration.
If you feel you are seeing things that aren’t really there, reach out to your doctor or ophthalmologist. They will rule out other causes of visual hallucinations like neurological conditions or medication-related side effects.
If your doctor thinks you have Charles Bonnet syndrome, they can provide ways to better manage your condition. They may tell you to:
- take note of when your hallucinations happen and change your environment in response—for example, if they happen in a brightly lit room, reduce lighting
- blink frequently or move your eyes side-to-side rapidly (while keeping your head still) during an episode
- get regular sleep and exercise, as fatigue and stress can worsen hallucinations
It’s also important be open about what you’re going through. Talking to someone about your hallucinations—whether a therapist, friend or loved one—provides the support and encouragement you need to cope with Charles Bonnet syndrome.
“Ophthalmologists can help comfort and support patients by reiterating that what they are experiencing is a by-product of their visual decline, not a reflection of their brain health,” says Dr. Patel.