‘It’s pretty obvious’
Crushed and upset when told told there was no record of her appointment, Ecola explained her plight to the receptionist and begged for help. After conferring with the doctor, Ecola was told she should call a neurologist specializing in movement disorders.
She hung up and called the neurology department at George Washington University School of Medicine, where she caught a break: A patient had canceled, and there was an opening the next day.
That’s when she met Ted Rothstein, an associate professor of neurology at GW who heads the movement disorders program.
Within minutes he told her what was wrong: Ecola had benign essential blepharospasm, a neurological disorder characterized by abnormal involuntary eyelid spasms and uncontrolled blinking. When accompanied by yawning or facial movements, the condition is called Meige’s syndrome, also known as craniofacial dystonia. Regardless of the diagnosis, treatment remains the same.
“It’s pretty obvious if a patient comes in blinking and grimacing and yawning,” Rothstein said, although other causes must be ruled out first.
The disorder affects about one in 20,000 people — women twice as often as men. It results from the abnormal functioning of the basal ganglion, the part of the brain responsible for control of muscles, although the cause of the malfunction is not known.
Most people who develop blepharospasm do so suddenly, according to the National Eye Institute, but in others, Ecola included, it occurs more gradually. And, as Ecola discovered, talking — or, for others, concentrating on a specific task — can temporarily reduce the severity of symptoms.
The first depiction of the condition dates back to the 16th century, when the Flemish artist Pieter Bruegel painted “De Gaper,” a portrait that captures the telltale facial tic. For centuries, sufferers were regarded as insane and often institutionalized. That view prevailed until the early 20th century, when doctors recognized the problem as being neurological, not psychological. (Scottish novelist Candia McWilliam, describes her ordeal with blepharospasm in a new book, “What to Look For in Winter: A Memoir in Blindness.”)
Rothstein said that blepharospasm can sometimes be misdiagnosed as blepharitis, an inflammation of the eyelid that can cause swelling, or as spasms caused by irritation of the facial nerve. In other cases it is mistaken for tardive dyskinesia, a disabling and sometimes permanent condition characterized by facial tics, which can develop after taking antipsychotic drugs. Because Ecola had never taken such medicines, the diagnosis was not complicated.