Since Halifax’s Kimberley Lake lost most of her sight in 2017 she has been experiencing visual hallucinations.
Some of her visions have been relatively benign, like seeing her grandmother smoking a cigarette in her closet. Other visions of rats, severed heads — even Donald Trump — are much more disturbing to her.
The condition is called Charles Bonnet Syndrome, or CBS. It affects people who are mentally healthy but have suffered a loss of vision or blindness.
According to Rhiannon Verran, a low-vision specialist with Vision Loss Rehabilitation Nova Scotia, the CNIB did a study in 2014 and found that 20 per cent of their clients had the syndrome.
Mainstreet NS12:45A N.S. woman with vision loss describes seeing terrifying hallucinations
Kimberley Lake is spreading the word about a common — but relatively unknown — condition called Charles Bonnet Syndrome, which can cause people to experience visual hallucinations that are unrelated to any mental health disorder. 12:45
It usually affects people with recent-onset vision loss that happens later in life.
Some of the conditions that can lead to the loss of sight include diabetic retinopathy, macular degeneration and glaucoma.
Verran said symptoms can appear anywhere from weeks to years after vision loss.
Lake said she lost most of her vision three years ago at age 47. She said what she sees now is “like watching TV through static” with a few large black spots.
“After seeing for 47 years, all of a sudden your brain is not understanding what’s going on,” she said.
“So your brain puts memories in these black spots where you can’t see anything, so things can just appear out of nowhere.”
According to Lake, people who are lonely or suffering from anxiety or fatigue tend to experience worse and more troubling visions. The pandemic, she said, has created the perfect environment for all of those conditions.
Severed head in bed
Lake said she is aware that the visions aren’t real but that doesn’t make them any less disturbing.
“I live alone and I wake up and … you’re half awake, asleep, and there’s a man with his head cut off laying beside you in bed,” she said.
Verran compared the condition to phantom limb syndrome where the brain still has connections to a missing limb and the person will feel sensations.
“The eyes are used to getting visual information and all of a sudden there’s not that visual information coming in anymore,” she said.
“So the brain wants to kind of fill in those blanks and it uses memories that you may have had.”
Verran said for most people the visions are pleasant things like landscapes or quilting patterns, but that is not true for all.
Lake is one of the people who experiences the darker side of the affliction.
She said her memories extend to movies and television shows she has watched like The Walking Dead and as a result she sometimes sees zombies and ghosts.
Coping strategies
Verran said there is no treatment for the condition, but symptoms tend to go away over the years.
She said they advise people to try to ignore the images, which she admits might be difficult in the case of a severed head or a zombie.
Verran said other strategies might work well for some people but not others.
“So maybe sucking on a sour candy, leaving that room and going and smelling something — that might help to kind of move along that visual hallucination a little faster,” she said.
Lake said she has found comfort in a CNIB Foundation support group for people with the syndrome.
“It started just a couple of months ago,” she said, “and it’s so great to hear other people’s experiences. So that’s a great coping mechanism for me.”
Speak out
Verran said she tells all of her clients to mention the symptoms to their doctor to rule out possible psychological or medication-related causes.
But many people are reluctant to speak about the visual hallucinations, according to Lake.
She said because the syndrome usually affects elderly people, they are afraid their sanity will be questioned, or that they may be experiencing symptoms of dementia and are “scared to death” to talk about it.
Verran said clients can be reluctant to say that they are having the visual hallucinations. But once she coaxes it out of them, they are relieved to hear that it is a common phenomenon.
“I can’t count how many times people I’ve asked the question and then they suddenly blurt it out and their family is shocked because they’ve never spoken about it,” she said.
Lake hopes that more people speak out about their condition to help raise awareness of the subject.
