SUDEP (Sudden Unexpected Death in Epilepsy) Rebecca Liu Consultant Neurologist Epilepsy Initiative Group, Royal Free London NHS Foundation Trust

AIMS Develop greater awareness and understanding of SUDEP Recognise those at high risk Understand possible mechanisms Practical measures that may reduce risk

What is SUDEP (Sudden Unexpected Death in Epilepsy)? Sudden and Unexpected death in person with epilepsy Witnessed or unwitnessed May or may not have been related to a recent seizure Not related to trauma Not due to drowning Not due to status epilepticus Definite SUDEP – autopsy shows no anatomical / toxic cause Probable SUDEP – no autopsy

TEST YOUR KNOWLEDGE The same as for the general population Compared to the general population, premature death in epilepsy is: The same as for the general population 3X greater 10X greater

TEST YOUR KNOWLEDGE 2. The commonest cause of death in epilepsy is: Accidents Drowning Status Epilepticus SUDEP Suicide Medication side effects

TEST YOUR KNOWLEDGE 3. In epilepsy surgery candidates, the risk of SUDEP is approximately: 1 in 10,000 people each year 1 in 1000 people each year 1 in 100 people each year 1 in 10 people each year

TEST YOUR KNOWLEDGE The single greatest risk factor for SUDEP is: Male Seizures at night AED polytherapy Long duration of epilepsy Frequent generalised convulsions

TEST YOUR KNOWLEDGE What is the most important factor in preventing SUDEP? Supervision after seizures Sleeping on your back Cutting down alcohol intake Bed monitor Achieving best seizure control possible Keeping antiepileptic medication to a minimum

Epilepsy surgery candidates SUDEP – some facts PWE have 3X increased mortality PWE are 24X more likely to die of sudden death SUDEP is the commonest cause of death in epilepsy Each year, 500 people die from SUDEP in the UK Commonest in age 20-40 years 1:1000 – 1:10,000 person years Average 1:200 / year High risk groups 1:100 / year Epilepsy surgery candidates

RISK FACTORS FOR SUDEP Frequent seizures especially GTCS Long epilepsy duration Early epilepsy onset Poor drug concordance AED polytherapy / change of AED doses Learning disability Young adults 20-40 years Male Sex Alcohol abuse

Why might SUDEP occur?

Heart Tachycardia during seizures is usual Bradycardia during seizures rare (2%) 16% had sinus arrest resulting in a pacemaker (Rugg Gunn 2004) Gene mutations associated with cardiological conditions have been found postmortem in 13% pts with SUDEP.

Lung Seizure-related apnoea recorded on VT units and animal models Low oxygen levels are common during seizures Apnoea due to CENTRALhypoventilation > obstructive Patients often lying on their front Hypoxia more in: temporal lobe seizures, long seizures and spread of seizure activity through brain Postictal hypoxaemia may lead to cardiac arrhythmias

Brain ‘Cerebral electrical shutdown’ seen in SUDEP patients Postictal generalised EEG suppression (PGES) often occurs after generalised convulsions ?PGES longer in patients with SUDEP More likely to be motionless after seizure and need help Does stimulation help?

Interaction between predisposing factors and triggers for SUDEP Individual Chronic epilepsy Seizure AED changes Unknown factors Arrhythmia, Apnoea, Cerebral shutdown

HIGH RISK PATIENTS Young men Early onset refractory seizures Symptomatic focal epilepsy Frequent convulsions Large number of AED drugs

What can we do to help prevent SUDEP? Control seizures as best we can! Encourage good drug concordance Avoid seizure triggers Consider specialist referral Stay with patient during recovery period Ensure nothing obstructing their breathing Position - Lie in recovery position, sleep on back Stimulate patient after a seizure Administer oxygen if necessary Consider nocturnal alarm, monitoring device, supervision

THE AFTERMATH Contact their GP, epilepsy specialist Emotional support / Counselling Put in touch with Epilepsy Bereaved