Sudden unexplained death in epilepsy (SUDEP)
Jane Lam
What if one morning you awakened to find a friend, relative or someone you know with epilepsy lying lifelessly in bed – dead? That significant individual may have been behaving normally, when you last spoke to or saw her. However, when postmortem examinations are done there appears to be focal brain lesions which may have caused a seizure before they passed away, but the autopsy reveals no cause of death.
What has occurred is known as sudden unexpected death. This devastating and horrific situation is unfortunate to everyone. SUDEP is no longer as rare as it was in the past. About 40-50% of deaths in those with epilepsy relate directly to their epilepsy, and of those 8-17% of deaths are caused by SUDEP. Although sudden unexpected death has gradually become more common is an issue often not spoken about – even by doctors treating people with epilepsy, who either fear speaking about this difficult subject, or are unaware of the risks. More research is needed to learn what exactly causes SUDEP and how it relates to one's seizures and epilepsy.
Some common causes include the malfunction of respiratory and cardiac organs. One theory, that may explain the respiratory factor, is that epilepsy itself, and/or the medications taken (AEDs) may weaken some major organs, causing patients to have difficulty in breathing, especially during a tonic clonic seizure. The reasons for respiratory problems may be due to airway obstruction, apnoea (cessation of breathing), or fluid in the lungs. While it may be common to recover from a seizure and return to a steady, normal breathing pattern, a problem arises when the natural recovery process does not happen. In essence the patient could suffocate.
Another possible cause of death could be cardiac-related problems. During and/or in between seizures, the part of the brain that controls one's heartbeat can be affected to the extent that an abnormal heart rhythm develops. It can become so unstable that the heart may suddenly stop beating entirely. Consequently, this along with other factors may trigger SUDEP. There are so many other potential contributing factors among those who have died from SUDEP: taking multiple anti-epileptic drugs, frequent changes in drug dosage, and brain damage.
Because SUDEP is unpredictable, the best way to prevent it is through education. Education will enhance awareness and provide a better understanding of the condition, complications and issues that can arise – thus improving one's management skills in reducing the risks of such and incident occurring. For example, to decrease the chance of any fatal seizures it is beneficial for an epilepsy patient to have good control of their seizures and of their medication intake. Medication should never be abruptly withdrawn, because seizures can occur, increasing the risk of SUDEP. Also, people with epilepsy should attempt to avoid any possible seizure triggers, such as alcohol, drugs and sleep deprivation. Should a seizure occur it is advisable to be accompanied by someone for 15 to 20 minutes after the seizure ends to ensure that breathing and heartbeat returns to normal. However, it is important that an agreement be reached between the caretaker and the person with epilepsy to safeguard the person's independence. Lastly, to those who have lost someone because of SUDEP, support from professionals, epilepsy organizations, support groups, peers and family members is crucial. Seeking help and asking questions, as well as sharing your experiences, can help to deal with this situation and find closure, as well as helping to find answers in the future.!
Jane Lam is a high school volunteer with Epilepsy Ontario
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