The fit that can be fatal

The medical profession has long been baffled by the deaths of young and otherwise healthy epileptics, but answers are starting to emerge at last. Barbara Rowlands reports

One warm summer's evening three years ago, Andrew Gould telephoned his wife, Fiona, from a small hotel in the south of England to catch up on news of his two small children. An ambitious young man with a promising career as an engineer ahead of him, Mr Gould was working away from his home in the Midlands. It was to be his last telephone call home: the next morning, hotel staff found him dead on the floor of his bedroom.

Mr Gould, 29, died of an epileptic seizure. He had not had an accident or fallen, as is sometimes the case; he had simply died of the condition itself.

"He was perfectly healthy otherwise; the doctors said it wasn't a heart attack," says Fiona. "They told me raised hormone levels in his blood indicated a seizure."

On the surface, Andrew Gould would seem one of the least likely candidates to die of an epileptic fit. Like many people with epilepsy, he had managed to lead a normal life; before the one which killed him, he had suffered only four grand mal episodes, the last when he was 21.

"I was just stunned by Andrew's death and I still am," says Fiona. "With any other illness you would be told the prognosis and all the facts, but with epilepsy it's constantly covered up. Even our GP wasn't aware that you could die from it."

Mr Gould was one of up to 1,500 people in Britain estimated to die each year from a little-known condition called Sudden Unexpected Death in Epilepsy (Sudep). Victims tend to be young - Sudep is the most common cause of death in people with epilepsy under 40 - and they are more likely to be men than women. Most are found dead in their bedrooms and are thought to die during sleep. Their deaths frequently come as a shock to their families and doctors, who are often unaware of the risk.

"Many pathologists conducting post-mortems in these cases are very puzzled by Sudep," he says. "They find nothing abnormal in the body and they strain to find a cause of death. For years there's been this myth of a pillow that suffocates epileptics. There's not a shred of evidence that anyone has suffocated on a pillow."

Dr Brown is one of the few scientists worldwide looking into the causes of sudden death in epilepsy. Early next year he will publish the interim results of a study comparing the heart and brain waves of people who died of Sudep with those of living epilepsy sufferers. Preliminary analysis, he says, suggests that abnormal brain discharges during a seizure can in some cases lead to ventricular tachycardia, an abnormally fast heartbeat. This in turn leads to ventricular fibrillation, a condition where the heart is hardly beating at all.

An electrically recorded heart wave has five components, known as PQRST; the interval between the Q and T waves is called the Q-T interval. If the interval is too long, it can cause the heart to become fatally unstable.

"We have been able to show that in at least some people with epilepsy who have diedsuddenly their Q-T interval was lengthened when they had an epileptic discharge," says Dr Brown. "This is not true in patients who are still alive. If this finding is confirmed, I will set up a study to see whether putting people with a lengthened Q-T wave on a heart drug could cut deaths."

Another theory being studied by scientists is that during a seizure the brain discharges its store of endorphins, naturally occurring substances that resemble morphine. The effect is similar to a morphine overdose - the victim stops breathing. Dr Brown believes that sudden unexpected death in epilepsy is probably caused by a combination of the two.

Jane Hanna, an Oxford don, lost her partner, Alan, suddenly in December 1990. He had had epilepsy for just seven months. Suffocation was written on his death certificate, and it was only through assiduous research on Sudep that Ms Hanna found out the real cause of his death.

Her struggle for the truth led her to found a support group, Epilepsy Bereaved, with Catherine Brookes, who lost her 21-year-old son to Sudep in 1991. So far, 115 bereaved families have been in contact.

The group campaigns to raise money for research into Sudep. One in 200 people have epilepsy but the disorder attracts little in government research funds - about pounds 360,000 a year.

"People need to know that something is being done about sudden unexpected death, even if we don't know the answers yet," says Ms Hanna. "It helps people to know that if healthy young people can just die out of the blue, someone cares enough to do some research on it."

Epilepsy Bereaved, PO Box 1777, Bournemouth, BH5 1YR; British Epilepsy Association Helpline, 0800 309030.