SUDEP (Sudden Unexpected Death in Epilepsy)

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

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

3. 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

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

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

6. 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

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

8. 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

9. 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

10. 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

11. Why might SUDEP occur?

12. 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.

13. 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

14. 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?

15. Interaction between predisposing factors and triggers for SUDEP

16. HIGH RISK PATIENTS • Young men • Early onsetrefractory seizures • Symptomatic focal epilepsy • Frequent convulsions • Large number of AED drugs

17. 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

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