The SUDEP phenomenon has been known to exist for many years, but only in the past two or three decades have neurologists in the United States acknowledged it as a common cause of death in association with epilepsy.

In the USA the educational effort about SUDEP for patients and families has been minimal. Reluctance to discuss the possibility of SUDEP when a seizure disorder is diagnosed seems to be based upon the presumption that such information would be too stressful or too difficult for the patient and family to handle. This attitude has been manifested both by medical professionals and lay organisations that support persons with epilepsy. The fear that such information may have a negative impact is not borne out by the responses of patients and families when presented with the facts.

Indeed, there seems to be some change in the wind regarding the desire to know more about SUDEP. Recently, because of requests for information from persons with epilepsy and their families, a first ever regional symposium about SUDEP was presented through the auspices of the Epilepsy Foundation of Southeastern Pennsylvania. Evaluations from the more than 100 attendees indicated that they were grateful to have been presented, for the first time, with in-depth information about SUDEP. It seemed that having this information was far more helpful than not knowing. Responses to this symposium indicate that patients and their families seem more comfortable discussing SUDEP than are the medical professionals.

The most frustrating aspect of SUDEP is our lack of knowledge about why it occurs and how it may be prevented. While there is data indicating that optimal seizure control lowers the probability of occurrence, it does not remove the chance entirely. The only intervention that is associated with an abolition of risk is that of complete cure of seizures consequent to temporal lobe surgery. The implication of this observation is that having any seizures, no matter how infrequent, is still associated with some risk of SUDEP.

The association of SUDEP with sleep has raised the question of whether monitoring of respiratory function during sleep allows for intervention by care-givers to prevent a fatal apnoea. Nonetheless, we still have a large group at risk of fatal cardiac arrhythmias for which we do not have any preventive measures.

Above and beyond the need for more scientific investigation into mechanism and prevention, we also need to determine the prevalence of SUDEP. A recent survey of medical examiners and coroners in the United States found a reluctance to use the diagnosis of SUDEP even when post mortem examination finds no other cause of death. Inappropriate diagnoses such as seizure related death, status epilepticus, or respiratory failure may be used instead. Consequently the accurate prevalence of this disorder is underestimated when compiling statistics about causes of death in epilepsy.

Many more investigators are involved in SUDEP related research than there were even a few years ago. We can be hopeful that some answers to the mystery of this disorder will be forthcoming.

Written by: Paul L Schraeder, Professor of Neurology,
Drexel University College of Medicine, Philadelphia, USA

Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.