Is it possible to die from epilepsy?

Even though the outlook for people with epilepsy is quite promising, there is an increased risk of death that is 2-3 times higher than the general population. About 40-50% of deaths of people who have epilepsy are related to epilepsy. (i)

It is important to remember that seizures themselves are rarely fatal. Death may occur because of accident directly related to a seizure, as a consequence of a seizure or ongoing seizures, from a condition that is causing the seizures, or there may be no clear cause as is the case with SUDEP.

Some epilepsy related causes of death include:

• Accidents during and after seizures, such as drowning, burns, or trauma. Drowning remains a common cause of death.
• Complications from a seizure, include choking and suffocation.
• Death from a condition or disease that causes seizures such as a brain tumour, Alzheimer?s disease, or stroke.
• Sudden unexpected death in epilepsy (SUDEP ? no identifiable cause)
• Status epilepticus (prolonged or ongoing seizures)
• Suicide rates are higher than average due to depression and issues associated with epilepsy.
• It is difficult to prove any relationship between death and long term use of antiepileptic drugs. Rarely antiepileptic drugs, however, may cause fatal reactions. Generally these occur during early stages of treatment.

• Rarely people with epilepsy may take intentional or non-intentional fatal overdoses of antiepileptic drugs. (ii), (iii)

What is SUDEP?

"SUDEP is the sudden, unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in patients with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomical cause for death." (iv)

It refers to people who have epilepsy and die suddenly and unexpectedly, and no cause of death can be found. The risk of this happening is very rare.

Most cases involve young people with a history of generalised tonic-clonic seizures. Frequently they are found dead in bed and the post-mortem examinations may reveal focal brain lesions causing the epilepsy but the cause of death cannot be established. Many people who have died from SUDEP have had sub-therapeutic (low) antiepileptic blood levels.

In an attempt to standardise the definition of this event, the US Food and Drug Administration (FDA) and Burroughs-Wellcome developed the following criteria for SUDEP in 1993. These criteria are now used in most SUDEP studies and are as follows:

• The person has epilepsy, which is defined as recurrent unprovoked seizures.
• The person died unexpectedly while in a reasonable state of health.
• The death occurred suddenly (i.e., within minutes).
• The death occurred during normal and benign circumstances.
• An obvious medical cause of death could not be determined at autopsy.
• The death was not the direct result of a seizure or status epilepticus.

Of note, evidence of a recent seizure does not exclude the diagnosis of SUDEP as long as death did not occur during the seizure.

Incidence

SUDEP may account for 8-17% of deaths in people with epilepsy.

Who is at risk?

Other factors

Seizure related risks

Medication risk factors

When considering the risk factors remember that just because some or more of these may apply it does not mean that someone will die from SUDEP. (v)

Cause of death
Different events may contribute to SUDEP in different people, and the reason probably involves a number of factors rather than one single mechanism.

Respiratory

Cardiac

Impact on families

When a family has lost a loved one to sudden and unexpected death, there are overwhelming feelings of shock, anger and disbelief, often because they didn't know or expect their loved one could possibly die from epilepsy. Feelings of guilt and missed opportunities are also common.
Because there is such mystery and many unknown factors surrounding sudden death in epilepsy, it creates a need to explore why this happened and what can be done about it. Dealing with the known is much easier than dealing with the unknown. (i)
Support from professionals, epilepsy organisations, support groups or peers to the remaining family members is a crucial component to the healing process, and people should be encouraged to seek help.

What can be done to prevent sudden death?

Education

Epilepsy education for people with epilepsy, their families and the community at large will enhance an awareness and understanding of the condition, the complications and issues that can arise. This in turn can only improve management of the condition as a whole. Education about the issue of death in epilepsy would also play a significant role in preventing sudden death if people know the risks and means to reduce the risk.

Seizure control

Medications - Good seizure control with the use of only one antiepileptic drug is the preferred option for decreasing the risk for SUDEP, however this is not always possible. Compliance with medication and avoiding periods of decreased coverage during changes in medication regimens are essential.

Activities - Avoid seizure triggers such as alcohol, drugs, sleep deprivation, or other individual triggers. High risk activities should be avoided or undertaken with strict supervision if seizure control is poor (e.g. driving, swimming, diving, rock climbing).

Training

Caregivers need to be trained in acute management of tonic-clonic seizures, including positioning the patients during and after the attack and delivering cardiopulmonary resuscitation (CPR). Breathing needs to be monitored during the period after the seizure. Stimulating the patients after the seizure also is believed to reduce the chances of apnoea.