Many people with epilepsy are able to live long and productive lives. Many, however, die before their time. There is two to three times more mortality among those having epilepsy than the general population. THIS IS ANOTHER GOOD REASON TO BRING A CURE TO THIS DEVASTATING DISEASE.

Another unfortunate side effect is that those with epilepsy from an unknown cause die an average of two years prematurely. If there is a known disease involved and more than two anti-epileptic medications are being taken, or where there has been brain surgery, PATIENTS DIE AN AVERAGE OF 10 YEARS PREMATURELY. This is a staggering statistic when compared to several other disabilities.

When individuals with epilepsy pass away, and no logical reason can be found for their death, the death will often be classified as SUDEP “Sudden Unexplained Death In Epilepsy.” Many times the death certificate is signed by a family physician, or by a medical examiner with limited knowledge of this occurrence. The doctor may then list another cause of death, making the accurate count of deaths due to SUDEP extremely difficult. Where an autopsy is practiced, the examiner may be able to rule out all physical and toxicological causes, and conclude that the cause was due to SUDEP. This was listed as Nina’s cause of death. It took over three months to eventually know what had taken her life.

Acquiring accurate information is difficult, however in a sufficiently large population of individuals with controlled epilepsy the incidence can range from 0.9 to 93 cases per 10,000 individuals per year. Among populations where epilepsy is uncontrolled and patients would be considered good candidates for surgery, SUDEP can range from 63-93 cases per year per 10,000 individuals.

A widely accepted definition of SUDEP was proposed by Nashef in 1997: “the sudden, unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death of patients with or without evidence of a seizure, excluding documented status epilepticus, and in whom post mortem examination does not reveal a structural or toxicological cause for death.”

The cause of SUDEP is not well understood, however there are well considered theories. One of the proposed causes is a called Sleep Apnea. This is a condition where there is a pause in the breathing, possible caused by a seizure, where the oxygen blood level drops

Heart rhythm changes are also cited as a possible cause of SUDEP. Changes in heart rate are common during seizures. The usual change is an increase of heart rate. Other arrhythmias, also serious, can occur.

SUDEP has been recognized since the 19th century, but until recently it was not well known outside of the medical community. Treating health practitioners apparently were reluctant to discuss the possibility of a person dying from epilepsy. It is still considered a benign disorder by some.

In recent years the attitude seems to be changing, and there is some public discussion on the topic. The medical community is divided as the best policy. Do you tell your patient that epilepsy can be fatal in a limited number of cases, and under certain circumstances or do you keep it a secret as it happened with our family? Are the patient and the supporting family better off not knowing?

The compelling argument for openness appears to be one of motivation. Knowing that there might be a possibility of death, the urgency would be to get the best treatment, take prescribed medication on schedule, see your neurologist regularly and always seek new information. This is difficult at best and not always possible, considering the type of epilepsy, the co-morbidity and the severity of the disorder.