Rare Disorder Causes Severe Head Rushes
When Megan Kenny was five years old, she began to exhibit a strange and troubling symptom: Every time she stood up for more than two minutes, she collapsed.
The episodes were particularly bad after Megan had been sitting or lying down for prolonged stretches, such as when she woke up in the morning or walked between classes at school.
“Church was always a disaster,” recalls Mary Kenny, Megan’s mother. After sitting or kneeling for a time, Megan would stand up with the congregation and invariably fall down.
As Megan got older, other worrisome signs emerged. Her eyelids began to droop. She continued to wet the bed and suffered from constant bladder infections. And, about once a week, she experienced extreme hypoglycemic episodes—a sudden drop in blood sugar levels—that left her shaking and unable to function for the rest of the day.
The Kennys visited a parade of doctors and specialists who considered, and ultimately ruled out, a grab bag of diagnoses: epilepsy, diabetes, cancer, liver failure, kidney failure. One time, after testing Megan for epilepsy, a neurologist observed that she appeared to have a severe form of orthostatic hypotension, a not-unusual condition in which a person’s blood pressure drops suddenly upon standing or sitting up, causing the sensation known as a head rush.
The doctor was only half right. Megan did have orthostatic hypotension, but the underlying cause was a far more exotic condition that wouldn’t be diagnosed until she was an adult. In the meantime, she had to cope with having blood pressure that could dive from a relatively normal 110/70 when she was lying down to 50/30 upon standing.
“I’ve seen dead people with higher blood pressure,” one nurse told her.