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”

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

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SUDEP stands for Sudden Unexpected Death in
Epilepsy
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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
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Person was not using illegal drugs (example: cocaine)
Person did not have a heart attack

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The exact cause is not yet known
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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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1 out of 1,000 patients with epilepsy die unexpectedly each year
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In those with uncontrolled epilepsy, risk increases to 1 out of every 150 people
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Risk of SUDEP increases when:
Seizures are not well controlled (treatment resistant epilepsy)
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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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Overall risk of SUDEP in patients with epilepsy:
1 in 1,000 (0.10%) per year
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Risk of SUDEP in patients without seizure control:
1 in 150 (0.66%) per year
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Lifetime probability of dying in car accident:
1 in 83 (1.2%)
[1 in 6500 chance each year]

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

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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)
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Do not change or stop medications without talking to your doctor first
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Call for refills long before you run out of medicine
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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
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If your medicine label is different when you pick up your meds, ask the pharmacist or call your doctor

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

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

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About 1/3 of patients with refractory seizures do not actually have epilepsy
Many other explanations for spells
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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

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What should I do if someone is having a seizure?
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“ TRUST ”
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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
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Never place anything in the person’s mouth!
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Do not try to restrain the person during a seizure

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If this is the person’s first seizure
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The person is pregnant or diabetic
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If the person was injured during the seizure or does not wake up properly
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If the person is having trouble breathing
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If the seizure lasts more than 5 minutes

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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
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If possible, cook with someone else around
Use rear burners
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Limit clutter and sharp objects in your home
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If you live alone, have routine check ins with family or neighbors
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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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There is no device proven to prevent SUDEP
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Several devices are marketed but have not been studied
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Some devices are currently under study
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Speak to your MD before purchase

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Some doctors don’t know about SUDEP
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Doctors that do know about SUDEP may not discuss it because:
Not much is known about the cause or prevention of SUDEP
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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

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

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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
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Contact your local hospital for bereavement groups
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If you need to speak with a healthcare professional in private, call your physician

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More than ever before
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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
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EFA, AES, CURE, SUDEP Aware, Epilepsy Therapy Project
3 day joint meeting for scientists and consumers being planned
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June 21-24, 2012 (location to be announced)
NIH SUDEP “Center Without Walls” grant
Center for Disease Control: registry?
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Areas of active research
Animal models, devices, seizure monitoring equipment, etc

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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:
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Amy Schmelzer, MS, MPH, CTTS
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Contributors to this presentation
Lawrence Hirsch, MD
Evan Fertig, MD
Eric Geller, MD
Madeline Fields, MD