SUDEP stands for Sudden Unexpected Death in Epilepsy and occurs if a patient with epilepsy in otherwise good health dies suddenly and unexpectedly. No specific cause of death is found upon autopsy. SUDEP is associated with a history of seizures, and rarely occurs in patients who have stopped having seizures.
It is estimated that 1 in 1000 people with epilepsy per year are victims of SUDEP. It is estimated that SUDEP is responsible for about 18% of all deaths in people with epilepsy.
What causes SUDEP?
The exact cause of SUDEP is not yet fully understood. However, ongoing research has shown that during and between seizures, the part of the nervous system that governs the orderly operation of the heart and lungs can be affected. This may result in heart and breathing irregularities. The cause of death may be related to a combination of causes including these irregularities.
Who is at risk?
SUDEP occurs most often in people who have had long-standing epilepsy and poorly controlled seizures. Victims of SUDEP have a higher than average frequency of seizures per year and they tend to be generalized tonic clonic seizures. In some studies there was not enough anti-epileptic medication in the blood stream of those who died.
What can be done to lower risk?
Since the greatest risk comes from ongoing seizures, risk reduction aims for seizure control. Avoid known triggers. Low AED (anti-epileptic drug) blood levels in victims indicate a need for strict following of the medication schedule. It is important to take medications exactly as prescribed. Take them at the same time each day and do not miss doses. It is equally important to notify the doctor when seizures persist, if there are any change of symptoms, or the development of any side effects.
Because breathing difficulty has been linked to SUDEP, caregivers need to be sure that the patient is positioned onto the side during and after seizure activity. Supervision or monitoring during sleep may be helpful for those in the high risk group. Breathing should be watched carefully after the seizure and family knowledge of CPR may be beneficial.
Why haven’t I heard of SUDEP before?
Many health care providers are reluctant to speak about SUDEP. They do not wish to cause undue alarm in patients. However, most patients have already thought about dying. The most effective way to combat fear is through knowledge of the facts. Talk to your doctor about SUDEP. It is important to talk about SUDEP because in addition to reducing fear, it is possible to reduce the risk in many cases.
As important as it is to reduce the risk of SUDEP, it should be remembered that SUDEP accounts for only a small percentage of deaths per year. It is equally important to eat a healthy diet, manage stress, exercise and get adequate sleep. These lifestyle measures are not just part of reducing the risk of seizures. They are also part of achieving optimal health and reducing the risk of cardiovascular and pulmonary disease. These conditions affect the general population as well as those who have epilepsy.
SUDEP Aware – Canada
Sudden Unexpected Death in Epilepsy – U.S. Center for Disease Control