Syndrome mostly needs reassurance

July 7, 2011 at 12:00a.m.

By Patricia Anstett

Detroit Free Press

DETROIT

Joan Lyon didn’t know why she had almost daily visions of things that weren’t really there.

“I’d tell my husband, ‘There are those flowers again,’” said Lyon, 82, of Waterford, Mich., who lives with her husband, Gordon.

Almost every day for two years, she saw trees covered in tiny, pink flowers, either on the house across the canal from her home or on the white living room wall. Her doctor suggested psychiatric medicines, which she said “quite offended” her.

Then came a visit to Dr. Lylas Mogk, a specialist in severe vision loss with the Henry Ford Health System. Within the hour, Lyon was diagnosed with Charles Bonnet Syndrome, an eye problem that causes visual hallucinations.

As America’s population gets older, more ophthalmologists realize that the syndrome exists. An estimated 25 million American have such bad vision that they see poorly even with glasses. About 20 percent to 40 percent of them develop hallucinations associated with the syndrome, Mogk and others said.

It mostly occurs in people who already have severe vision loss caused by macular degeneration, glaucoma, stroke or diabetes, said Mogk, who has lectured nationwide on the condition and has a book with a chapter devoted to it.

“It rarely needs treatment; it mostly needs reassurance,” said Dr. Jonathon Trobe, a University of Michigan ophthalmologist. Doctors say they believe the condition more likely afflicts people who are socially isolated. Deprived of “sensory input” from things seen, “the brain goes in any direction it wants to go,” Trobe theorized.

First described in 1769, the syndrome has remained poorly understood, in part because many patients don’t want to admit they’re seeing things.

Mogk said patients worry they’ll be considered crazy and treated with anti-psychotic medicines or be admitted to a nursing home.

She gets patients to talk about the visions by asking: “Do you ever see things you know are not there?”

The answers pour out.

Lyon’s visions lasted two years and ended about two years ago. Her vision is waning with macular degeneration, but she has adapted her home with visual clues. The rest of life’s challenges she laughs off.

“I appreciate the fact that I can see this much,” she said.