The Epilepsy Association of Calgary

Epilepsy is rarely life threatening. Recently, however, a "new" syndrome, Sudden Unexplained Death in Epilepsy Patients, SUDEP, has challenged this assumption. SUDEP is reported to account for 12-15% of deaths in persons with epilepsy. Naturally, this has caused some concern, not only because no specific cause has been identified, but also because the individuals involved have been young and, otherwise, previously healthy.

When the facts that are known about SUDEP are reviewed, two positive pieces of news are revealed. First, this is not a new syndrome; it has been recognized since at least as far back as 1910. Therefore, the risk from SUDEP is not a new threat. It has always been there. Second, although the actual physical mechanism that causes SUDEP is not clearly understood, there are several common factors related to lifestyle issues of those involved that suggest SUDEP may be preventable.

These deaths occur during sleep and consequently have not been witnessed. No physical mechanism has been determined in autopsy. However, it is significant that frequently these individuals had sub-therapeutic serum levels of anti-epileptic drugs. SUDEP more typically occurs in young adults, more frequently males, whose seizures are not well controlled. Alcohol abuse and recent life stresses and emotional issues have also been reported as common factors. It may be that when medication allows the individual to lead a more or less full and active life, the temptation may be to ignore the epilepsy condition - to live despite one's epilepsy instead of with it. The result could be a deterioration in seizure control.

This may be a reflection of the demands of our modern society. The trend is for a faster pace of life; to always accomplish more in less time. The resultant stress is, in and of itself, a major source of ill health. But in our quest to live life to the fullest we may also make lifestyle choices that eventually negatively affect our health - we don't get enough sleep, don't exercise regularly, don't eat properly, and we don't take time to relax. These same lifestyle issues are evidenced in SUDEP and underscore the importance of holistic self-care to maximize control over seizures. Drugs control seizures but do not remove the cause and, more importantly, can only work when taken properly. Adopting a healthier lifestyle is not an impossible task, but it does require taking more active steps and it requires that appropriate behaviours be carried out regularly.

The same steps that can be taken to control seizures and ultimately prevent SUDEP are the same steps that, in the long run, will improve the quality of our lives, our physical and mental health. These steps would include:

a) regular medical monitoring,
b) taking medication as prescribed,
c) getting adequate sleep,
d) proper nutrition,
e) avoiding potential dangers such as excessive alcohol,
f) maintaining social supports, and
g) developing skills to recognize and control the effects of emotions and stress in our lives.

Therefore, the individual can do much to lessen, if not eliminate, his or her risk from SUDEP.

If you have concerns or require any further information, please call our office at 230-2764 and ask for the Support Coordinator.