Sudden Unexpected Death in Epilepsy SUDEP and Safety

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Sudden Unexpected Death in Epilepsy (SUDEP) and Safety Devices A USER MANUAL Evan Fertig

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

I think I will call myself “BRAIN”

I think I will call myself “BRAIN”

Outline What is SUDEP? What causes SUDEP? Who is at risk for SUDEP? How

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?

What is SUDEP? SUDEP stands for Sudden Unexpected Death in Epilepsy May be the

What is SUDEP? SUDEP stands for Sudden Unexpected Death in Epilepsy 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

What causes SUDEP? The exact cause is not yet known Some common theories causing

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

Who is at risk for SUDEP? 1 out of 1, 000 patients with epilepsy

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

Seizure Control

Seizure Control

Risks in Perspective Overall risk of SUDEP in patients with epilepsy: 1 in 1,

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]

How can I reduce the risk of SUDEP? Reduce number of seizures Medication control

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

Medication Control Take your medicine as instructed by your doctor Use pill box, alarms,

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

Avoid Seizure Triggers Take your medicine Get enough sleep Avoid alcohol in excess Avoid

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

Where Can I Find Specialist Care? Poor seizure control? Too many side effects? Consider

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

Video-EEG monitoring: why it’s so important About 1/3 of patients with refractory seizures do

Video-EEG monitoring: why it’s so important About 1/3 of patients with refractory seizures do not actually have epilepsy The majority (60 -90%) of patients undergoing the most common types of epilepsy surgery have no further seizures afterwards Many other explanations for spells 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

Seizure Safety What should I do if someone is having a seizure? “ TRUST

Seizure Safety What should I do if someone is having a seizure? “ TRUST ” Turn person on his or her side (especially head at end of seizure) Remove all objects around person (glasses, sharp objects, etc. ) Use something soft under the person’s head (but NOT a pillow!) Stay calm and stay with the person Time the length of the seizure Never place anything in the person’s mouth! Do not try to restrain the person during a seizure

When should I call 911? If this is the person’s first seizure The person

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

Seizure Safety Tips Never swim or bathe alone if you have uncontrolled seizures (if

Seizure Safety Tips Never swim or bathe alone if you have uncontrolled seizures (if you have a child, do not bathe 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).

Safety Devices to Prevent SUDEP There is no device proven to prevent SUDEP Several

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

Smart. Watch by Smart. Monitor

Smart. Watch by Smart. Monitor

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

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

Aremco

Aremco

Neurovista

Neurovista

Neuro. Pace

Neuro. Pace

High Tech?

High Tech?

Why wasn’t I told about SUDEP? Some doctors don’t know about SUDEP Doctors that

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

Where can I learn more about SUDEP? Here a list of websites with more

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

Where can I get support? Contact your local Epilepsy Foundation for support groups For

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

What is being done to help prevent SUDEP or determine its cause? More than

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

A Special Thanks A special thank you for the research and development of the

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