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Seizure-Related Emergencies Status Epilepticus and SUDEP Evan Fertig MD, Northeast Regional Epilepsy Group

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  • Seizure-Related Emergencies Status Epilepticus and SUDEP Evan Fertig MD, Northeast Regional Epilepsy Group
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  • I think I will call myself BRAIN
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  • Outline Status Epilepticus SUDEP Causes Prevention Devices Seizure Safety
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  • Case 1 Edward is a 12 year old child with absence seizures (staring and blinking episodes) and grand mal (GTC) seizures who takes Depakote His friend texts him and ask him to stay over Mom picks him up Sunday PM and he doesnt seem right. He responds intermittently and is blinking frequently. His uncle says that he has been like this since lunch like he is in a stupor. EEG in ER reveals he is in absence status epilepticus
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  • Status Epilepticus A medical and neurologic emergency 55,000 deaths in U.S. per year Early recognition and treatment are essential TIME IS BRAIN
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  • Why is Status Different than Usual Seizures? Lowenstein: Epilepsia 1999;40:120-2 Time 0 Seizure Starts 1 minute Most seizures stop here! 5 minutes Operational Definition 30 minutes Official Definition
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  • Not all Status Epilepticus is Created Equal Nonconvulsive Unresponsive Subtle or absent convulsions More Dangerous Generalized Convulsive UnresponsiveObvious convulsionsDangerous Absence and Other Usually No convulsions, other features Not as dangerous (except Myoclonic)
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  • Why is Status Epilepticus Dangerous? Heart Low Blood Pressure Arrhythmias Lungs Breathing Problems Aspiration Lung clots Brain Brain cell death?
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  • Treatment of Status Epilepticus Breathing tube may be needed Intensive Care Treat infections with antibiotics Lungs IV lines IV fluid Heart monitor Heart and Blood Pressure Seizure medications by IV Drug-induced coma EEG monitor Brain
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  • Questions, questions, questions Why did Edward go into Status Epilepticus? How could it have been prevented?
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  • Causes of Status Epilepticus Medication Non-adherence with Known Epilepsy Can occur even with good medical adherence! No Epilepsy Alcohol Withdrawal Meningitis (Brain Infection) Stroke Head trauma Lack of Oxygen after Cardiac Event
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  • Case Continued The neurologist on call gives Edward ativan and he immediately recovers Bloodwork: Low depakote level Seizure Action Plan/Diastat prescribed Neurologist and Mom talk and the conversation comes around to worst case scenarios
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  • 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
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  • 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
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  • 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
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  • Seizure Control
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  • 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]
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  • Why wasnt I told about SUDEP? Some doctors dont 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 everyones risk of SUDEP is the same
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  • 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
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  • 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
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  • Avoid Seizure Triggers Take your medicine. Low drug levels number 1 cause Get enough sleep Avoid alcohol in excess Avoid specific seizure triggers if you have any
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  • 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
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  • Seizure Safety
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  • 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 persons 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 persons mouth! Do not try to restrain the person during a seizure
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  • When should I call 911? If this is the persons 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
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  • 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).
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  • 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
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  • SmartWatch by SmartMonitor
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  • Emfit Movement Monitor (outside US and Canada: Emfit Tonic-Clonic Seizure Monitor
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  • Aremco
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  • Neurovista
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  • NeuroPace
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  • High Tech?
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  • 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
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  • 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
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  • 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 activ

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