Seizure Safety and Seizure Risk: From First Aid to SUDEP

1. Daniel Friedman, MD Assistant Professor of Neurology NYU Comprehensive Epilepsy Center Seizure Safety and Seizure Risk: From First Aid to SUDEP

2. Outline Seizure First Aid Seizure-related injuries Strategies for prevention Epilepsy and driving Seizure-related mortality Sudden unexpected death in epilepsy (SUDEP)

3. Seizure First Aid What should I do if my family member has a seizure? What should I tell my family to do if I have a seizure?

4. Complex partial and absence seizures Observe the person and gently move the person away from danger (e.g. hot stove, stairs, road) Careful to avoid restraining people during seizures unless there’s immediate danger Speak in reassuring voice Stay with the person until they are fully aware Explain to others what is happening From www.epilpesyfoundation.org

5. Generalized tonic-clonic seizures Stay calm and reassure bystanders Don’t restrain the person Keep track of time (90% of seizures stop after 2 min) Clear the area of potential hazards and loosen collar or tie Turn the person on their side to help clear secretions Do not force as shoulder dislocation can occur If necessary, wait until the seizure is over DON’T PUT ANYTHING IN THE MOUTH Stay with the person until the seizure ends and consciousness is back to normal Speak calmly to the person and let them know what happened From www.epilpesyfoundation.org

6. When to call 911 Most seizures stop on their own and there are few lasting effects; EMS is usually not needed unless: There is no known history of epilepsy The seizure occurred in the water The person is pregnant or diabetic The seizure lasts > 5min or they come one after another The person does not wake up appropriately There is injury due to the seizure There is difficulty breathing

7. Emergency Plans Discuss with your doctor what to do if you have a seizures Some patients with a tendency to have prolonged seizures or repetitive seizure may benefit from a rescue medication Benzodiazepines Rectal Valium (Diastat™) Intranasal Midazolam (Versed™) Lorazepam tablets (Ativan™) Clonazepam tablets or wafers (Klonopin™) When to call 911, when to call the office

8. Seizures and Injuries ~15-20% of patients will have at least one seizure related injury Most common are: Bruises, lacerations/abrasions, fractures, concussions, sprains, burns However, rates of injuries are only ~5% higher in people with epilepsy compared to general population Kwan et al. Epilepsia 2010

9. Falls & Fractures Most common cause of injury in epilepsy Falls may be due to Seizure Post-ictal state Side-effects of medications Most falls do not lead to significant injury Fractures can also occur from the seizure itself Compression fractures, clavicular fractures, shoulder fractures Concusions can occur in ~10% of seizure-related falls

11. Burns About 5% of patients with epilepsy will get burns requiring medical attention Burns are more common in patients with epilepsy Often related to falls or loss of awareness : Kitchen while cooking In the bathroom with hot water running Radiators Smoking Ironing Drinking hot beverages

13. Drowning People with epilepsy are 15 x more likely to drown than the general population Swimming and bathing Risk is even higher inc children, mostly in bathtubs

14. Prevention strategies General Strategies: Strive for optimal seizure control Discuss drug side effects with doctor Discuss your risks of osteoporosis with your doctor Weight bearing exercise Calcium and vitamin D Screening tests when indicated Appraise your situation: What would happen if you were to have seizure?

15. Kitchen & Bathroom safety If possible, cook with someone else around Use rear burners, insulated pot handles (facing inward) Microwaves Covered cups when drinking hot beverages Limit use of glass containers, knives as much as possible Use rubber gloves when washing dishes or cutting

16. Kitchen and bathroom safety, cont. Set boiler thermostat to <110 deg (saves money, too) Use single handle shower fixtures with scald guards or thermal regulator valves Always turn cold water on first Use shower curtains or doors that swing out Non-skid pads Don’t bath alone (and don’t bath your child alone) Keep the bathroom door unlocked Hang doors to open outward

17. Home safety Don’t climb ladders alone Don’t light candles or fires while alone Power tools should have automatic shutoff Use rugs, especially on hard surfaces like tile Limit clutter, sharp corners

18. What if you live alone? Have routine check ins with friends, family or neighbors Consider giving multiple reliable people keys to your home Consider medical alert device/service (e.g. Philips Lifeline™)

19. Sports and Recreation Never swim, ski, hike alone Pools are preferable to open water Let the lifeguard know you have epilepsy Wear helmets and protective equipment while biking, skiing Stay clear of ledges Wear life vests while boating Avoid free weights, treadmills at the gym Before engaging in an activity, ask: what would happen if I had a seizure?

20. Driving & other transportation Having even a brief seizure with altered awareness while driving can be deadly though seizure related car accidents are rare Laws in NY, NJ mandate 1 year of seizure freedom prior to driving; 3-6 mo in CT Period can be shortened if seizure is deemed unlikely to occur Determined by Neurological Disorders Committee in NJ Determined by MD in NY

21. Prevention Honor and obey your states restrictions regarding driving and seizures Avoid driving when reducing or making medication changes – discuss with your MD If you have an aura, pull over as safely and quickly as possible Avoid missing medications or other provocative factors

22. Epilepsy Mortality Epilepsy mortality is ~2.3 x higher than the general population Common causes of death in epilepsy included: Progression of underlying condition Status epilepticus Drowning Suicide Pneumonia Sudden death

23. Sudden unexpected death in epilepsy Definite: The sudden, unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death in patients with epilepsy with or without evidence for a seizure in which postmortem examination does not reveal a structural or toxicological cause for death Excluding status epilepticus Probable: sudden deaths occurring in benign circumstances with no known competing cause for death but without autopsy Possible: limited information regarding death circumstances or there is a plausible competing explanation for death Nashef, 1997; Annegers, 1997

24. Incidence of SUDEP Sudden death is ~24x more common in people with epilepsy compared with the general population Most common condition-related cause of death in chronic epilepsy 100-fold range in SUDEP incidence within the epilepsy population 0.09/1000 in prospective community-based studies of newly diagnosed patients 9/1000 in epilepsy surgery candidates

25. SUDEP Rates

26. In comparison Risk of death from epilepsy surgery is ~1/1500 Refractory epilepsy patients have the same risk of death in about 1 month

28. Consistent Risk Factors Increased GTCS frequency Polytherapy Increased duration of epilepsy Early age of onset Hesdorffer et al. 2011

29. When does SUDEP occur? Sillipana & Shinnar 2010

30. Mechanisms of SUDEP Witnessed, EMU-recorded, and post-mortem studies all support a seizure, typically GTC, as the terminal event Three main mechanism emerge from EMU observed cases: Primary respiratory causes: central or obstructive apnea Cerebral shutdown: diffuse post-ictal suppression of EEG preceding EKG or respiratory changes Cardiac arrythmias

31. Resipiratory Seizures can caused decreased oxygenation Seizures can reduce the drive to breath (apnea) Some SUDEP may be failure to recover from these breathing problems Serotonin may play an important role

32. Brain Shutdown After a seizure, shutdown in brain function can: Reduce drive to breath Limit protective reflexes E.g. turning over when face is in pillow

33. Cardiac Arrhythmias Seizures may lead to heart arrythmias in some Some people may already have underlying heart disease Seizure is the ultimate stress test Most people have normal hearts Some people may carry genes that predispose them to arrythmias Some gene defects can predispose individuals to BOTH epilepsy and heart arrythmias

34. Preventing SUDEP No intervention is proven to prevent SUDEP Target modifiable risk factors: Optimize seizure control, especially GTCS Medications, surgery, devices if appropriate Compliance Lifestyle factors: good sleep, avoid excess alcohol Limiting # of total drugs? Supervision? Bed alarms Baby monitors Room sharing

35. Seizure alarms No evidence that they prevent SUDEP Not FDA approved for that purpose Frequent false alarms with current models may limit use Costly ~$800-1000 Baby monitors are affordable

36. Seizure Alarms – future horizons Watch based devices ?more reliable Linked to phones/pagers Portable Smartphone applications

37. Anti-suffocation pillows Special pillows to prevent complete occlusion of the face when the person is face down Not proven to prevent SUDEP

38. For more information www.sudep.org www.epilepsy.com www.sudepaware.org www.epilepsyfoundation.org

39. Questions?