1. Sudden Unexpected Death in Epilepsy (SUDEP) and Safety Devices A USER MANUAL Evan Fertig MD, Northeast Regional Epilepsy Group

2. I think I will call myself “BRAIN”

3. Outline  What is SUDEP?  What causes SUDEP?  Who is at risk for SUDEP?  How can I reduce the risk of SUDEP?  Are there Safety Devices to prevent SUDEP?  Where can I learn more and get help?

4. What is SUDEP?  SUDEP stands for S udden U nexpected D eath in Ep ilepsy  May be the cause of death when:  A healthy person with epilepsy dies suddenly without drowning or trauma  The person may or may not have had a seizure before death  No other reason for death is found upon exam after death  Person was not using illegal drugs (example: cocaine)  Person did not have a heart attack

5. What causes SUDEP?  The exact cause is not yet known  Some common theories causing SUDEP include:  Heart arrhythmias (abnormal heart rhythms)  Breathing trouble  Lack of protective brain chemicals  A combination of causes

6. Who is at risk for SUDEP?  1 out of 1,000 patients with epilepsy die unexpectedly each year  In those with uncontrolled epilepsy, risk increases to 1 out of every 150 people  Risk of SUDEP increases when:  Seizures are not well controlled (treatment resistant epilepsy)  Treatment resistant epilepsy = failure of 2 medication trials  A patient suffers from generalized tonic-clonic (“grand mal”) seizures, esp at night when the person is sleeping

7. Seizure Control

8. Risks in Perspective  Overall risk of SUDEP in patients with epilepsy: 1 in 1,000 (0.10%) per year  Risk of SUDEP in patients without seizure control: 1 in 150 (0.66%) per year  Lifetime probability of dying in car accident: 1 in 83 (1.2%) [1 in 6500 chance each year]

9. How can I reduce the risk of SUDEP?  Reduce number of seizures  Medication control  Avoid triggers: alcohol, sleep deprivation, missed medications  Consider having an evaluation at an Epilepsy Center if you have persistent seizures despite treatment or cannot tolerate your medication  Practice good seizure safety when seizures do happen  “TRUST”  Seizure safety tips  When to call 911

10. Medication Control  Take your medicine as instructed by your doctor  Use pill box, alarms, reminders, etc  Have a method to determine whether or not you already took your dose (e.g., weekly pill box)  Do not change or stop medications without talking to your doctor first  Call for refills long before you run out of medicine  Each time you get your meds:  Make sure the med name, instructions, and dose are the same  Make sure they are from the same manufacturer  If your medicine label is different when you pick up your meds, ask the pharmacist or call your doctor

11. Avoid Seizure Triggers  Take your medicine  Get enough sleep  Avoid alcohol in excess  Avoid specific seizure triggers if you have any

12. Where Can I Find Specialist Care?  Poor seizure control? Too many side effects? Consider seeing a specialist at a comprehensive epilepsy center  www.efnj.com/content/info/epilepsy_centers.htm  Epilepsyfoundation.org  Find closest local affiliate  National Association of Epilepsy Centers  www.naecepilepsy.org/find.htm

13. Video-EEG monitoring: why it’s so important  About 1/3 of patients with refractory seizures do not actually have epilepsy  Many other explanations for spells  The majority (60-90%) of patients undergoing the most common types of epilepsy surgery have no further seizures afterwards  Very dependent on epilepsy type and exact location of where seizures arise  Inpatient video-EEG monitoring can also identify seizures in sleep, test awareness during seizures, evaluate EEG between seizures, provide a chance for safe, rapid medication changes, etc

14. Seizure Safety  What should I do if someone is having a seizure?  “ TRUST ”  T urn person on his or her side (especially head at end of seizure)  R emove all objects around person (glasses, sharp objects, etc.)  U se something soft under the person’s head (but NOT a pillow!)  S tay calm and stay with the person  T ime the length of the seizure  Never place anything in the person’s mouth!  Do not try to restrain the person during a seizure

15. When should I call 911?  If this is the person’s first seizure  The person is pregnant or diabetic  If the person was injured during the seizure or does not wake up properly  If the person is having trouble breathing  If the seizure lasts more than 5 minutes

16. Seizure Safety Tips  Never swim or bathe alone if you have uncontrolled seizures (if you have a child, do not bathe the child alone either)  Keep shower drains unclogged  Do not lock bathroom door  If possible, cook with someone else around  Use rear burners  Limit clutter and sharp objects in your home  If you live alone, have routine check ins with family or neighbors  Stop all dangerous activities if you have an aura (stop driving if your doctor has allowed you to drive, turn off power tools you are using, etc).

17. Safety Devices to Prevent SUDEP  There is no device proven to prevent SUDEP  Several devices are marketed but have not been studied  Some devices are currently under study  Speak to your MD before purchase

18. SmartWatch by SmartMonitor

19. Emfit Movement Monitor (outside US and Canada: Emfit Tonic-Clonic Seizure Monitor

20. Aremco

21. Neurovista

22. NeuroPace

23. High Tech?

24. Why wasn’t I told about SUDEP?  Some doctors don’t know about SUDEP  Doctors that do know about SUDEP may not discuss it because:  Not much is known about the cause or prevention of SUDEP  No proof that one can prevent it except to control seizures as much as possible  Some doctors feel that talking about SUDEP would be unnecessarily frightening to some patients  Time in the office visit is short – this time is better spent making sure seizures are under control  Not everyone’s risk of SUDEP is the same

25. Where can I learn more about SUDEP?  Here are a list of websites with more information on SUDEP  Epilepsy Foundation: www.epilepsyfoundation.org/about/SUDEP/faqs.cfm www.epilepsyfoundation.org/about/SUDEP/faqs.cfm  Epilepsy. com Epilepsy. com  www.epilepsy.com/EPILEPSY/sudep_epilepsy www.epilepsy.com/EPILEPSY/sudep_epilepsy  SUDEP Aware:  www.sudepaware.com www.sudepaware.com  Epilepsy Bereaved:  www.sudep.org www.sudep.org

26. Where can I get support?  Contact your local Epilepsy Foundation for support groups  For NJ residents: www.efnj.com  For other states, find your local Epilepsy Foundation using: www.epilepsyfoundation.org  Contact your local hospital for bereavement groups  If you need to speak with a healthcare professional in private, call your physician

27. What is being done to help prevent SUDEP or determine its cause?  More than ever before  Many international meetings  Combined Epilepsy Foundation and American Epilepsy Society Task Force (done)  National Institutes of Health multidisciplinary 2.5 day workshop (done)  Creation of the SUDEP Coalition  EFA, AES, CURE, SUDEP Aware, Epilepsy Therapy Project  3 day joint meeting for scientists and consumers being planned  June 21-24, 2012 (location to be announced)  NIH SUDEP “Center Without Walls” grant  Center for Disease Control: registry?  Areas of active research  Animal models, devices, seizure monitoring equipment, etc

28. A Special Thanks  A special thank you for the research and development of the content of this presentation and the coordination of this project done in conjunction with EFNJ:  Amy Schmelzer, MS, MPH, CTTS  Contributors to this presentation Lawrence Hirsch, MD Evan Fertig, MD Eric Geller, MD Madeline Fields, MD