SUDEP
No one knows what causes Sudden Unexpected Death in Epilepsy (SUDEP), but many areas are being looked at. SUDEP occurs most often at night or during sleep and the death is not witnessed, leaving many questions unanswered.
Adults living with epilepsy have a risk of 1.2 in 1000 of SUDEP per year and in Australia this would be approximately 171 deaths. In children with epilepsy it is a rare occurrence as low as 1 in 4,500.
Current research into the possible causes of SUDEP focuses on problems with breathing, heart rhythm and brain function that occur with a seizure.
- Breathing: A seizure typically may cause a person to briefly stop breathing (apnea). If these breathing pauses last too long, they can reduce the oxygen delivery to the heart and the brain. This can be life threatening if not treated immediately. A person’s airway may sometimes become obstructed or blocked during a convulsive seizure, leading to suffocation (inability to breathe).
- Heart Rhythm: Rarely, a seizure may cause a dangerous heart rhythm or cardiac arrest.
- Brain Function: Seizures may interfere with the function of vital areas in the brainstem that controls breathing and heart function. If this happens, these brain areas may not work right, causing breathing and heart rate problems.
- Others: SUDEP may result from more than one cause, or from a combination of breathing difficulty, abnormal heart rhythm and changes in brain function. Or, it may result from factors researchers have yet to discover.
SUDEP RISK FACTORS
- Uncontrolled or frequent seizures
- Tonic-clonic seizures particularly if they occur during sleep
- Seizures that begin at a young age
- Many years living with epilepsy
- Missed medication
- Poor self-management e.g. too much alcohol, illicit drug taking, stopping medication against medical advice.
REDUCING THE RISK
- Seek information about the best way to manage seizures by speaking with treating health professionals
- Take medications as prescribed
- Avoid known triggers
- Aim for healthy lifestyle especially adequate sleep
- Use anti-suffocation pillows
- Monitoring devices (e.g. seizure alerts alarms)
It is important to mention SUDEP so you know about it and understand epilepsy can and does kill people. It underlines the importance of working with your doctor, family and counsellors to minimise the impact of epilepsy in your life.
References
Epilepsy Foundation, 2019, Sudden Unexpected Death in Epilepsy, Epilepsy Foundation Managing Epilepsy Health and Wellbeing
Epilepsy Queensland, 4 Feb 2018, SUDEP ( sudden unexpected death in epilepsy) SUDEP FACTS
International League Against Epilepsy ,n.d., SUDEP ( sudden unexpected death in epilepsy) viewed 10 August 2021