It was the middle of the night when Constance Hoyt awakened to find her husband, John, making anguished sounds while his arms and legs jerked around.
The couple was living in Asuncion, Paraguay, where they worked in a Christian academy, and Constance Hoyt was sure she was losing her husband. Hours later, at a hospital, doctors concluded he had suffered a heart attack. A pacemaker was implanted.
It was not until months later, after two more such episodes, that the Hoyts were referred to Dr. R. Eugene Ramsay at the University of Miami and learned that Hoyt, a retired pastor, had epilepsy.
He became part of a national study of the serious but severely under-diagnosed problem of epilepsy in the elderly, was given medication and never had another seizure. That was three years ago.
"It took me months and months and months before I woke up in the night and didn't check if he was breathing," Constance Hoyt said. Now the couple, from Palm Beach County, Fla., are looking forward to their next church-building mission trip.
Patients like John Hoyt prompted Ramsay to begin sounding the alarm about epilepsy and organizing the national project 10 years ago with a colleague from the Mount Sinai School of Medicine.
Now 500 patients at 17 centers are participating in the study funded by the Veterans Administration, and researchers hope to recruit about 220 more.
"The incidence of seizures in the elderly is probably six to eight times higher than in any other age group," Ramsay said. That's at least partly because of vascular disease and other maladies that put seniors at high risk for stroke.
Doctors seldom diagnose epilepsy correctly because most elderly patients don't have the convulsions typical of younger people. "The way seizures present is totally different," Ramsay said. An older person often just stops what he's doing and stares into space.
"It's not as overt, but it has some tremendously terrible side effects," Ramsay said. For days after the seizure, the patient may be confused and disoriented.
"Because it's not been talked about, when somebody comes in with a memory disorder, it's attributed to the aging process or to Alzheimer's," Ramsay said. So the patient doesn't get the proper treatment.
The study is looking at the effects of three seizure medications to determine which are best tolerated in the elderly. Other studies suggest that side effects in older people are two to three times higher than in younger patients, partly because they're taking so many other medicines.
One way researchers found patients for the study was by "scrounging through the wards," Ramsay said. "Three-fourths of the doctors who saw these patients originally were not thinking epilepsy at all."
Epilepsy results from scarring of the brain, he said, which can be caused by such trauma as head injury from an auto accident or stroke in the elderly.
Cells on the surface of the brain lose their normal function, resulting in excessive electrical activity that Ramsay calls "brainstorms." In more than half the cases, an EEG, or electroencephalogram, shows the damage.
James Crossman of Pembroke Pines, Fla., joined Ramsay's study recently after suffering a seizure in 1998 that was attributed to low sodium. "I was dropping everything," said Crossman, 65.
While he was registering at the VA Hospital for treatment, he passed out.
When it was determined his sodium was low, Crossman was put on eight medications. He had a few more slight seizures in which he would just go blank.
He was finally referred to Ramsay and says he began feeling much better when he stopped taking the eight pills and was put on one of the study medications.
Crossman and Hoyt "illustrate the problem of proper diagnosis," Ramsay said. Asking the right questions and exploring the patient's history are critical.
He described another example of a patient who said his arm would occasionally become paralyzed. He thought he was suffering from vascular disease.
But when Ramsay talked at length with the man's daughter, she said her father's arm became stiff or extended - a known indication of a seizure.
Once diagnosed, most epilepsy patients are put on Dilantin, which has been used since 1938. But Ramsay says it has downsides: It worsens thinning of the bones in the elderly and can cause instability and vision disturbances. Hoyt said the drug made him tired all the time and disrupted his balance.
Hence the search for better medicines. The study will compare the anticonvulsant drug carbamazepine, marketed as Tegretol and fairly widely prescribed for seizures in the elderly, against two newer drugs: gabapentin (brand name Neurontin) and lamotrigine (brand name Lamictal).
"We thought newer drugs would be better tolerated, give a better result and a better quality of life," Ramsay said.