Transcript SUDEP - Northeast Regional Epilepsy Group

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”
Outline
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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?
What is SUDEP?
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SUDEP stands for Sudden Unexpected Death in
Epilepsy
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May be the cause of death when:
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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
What causes SUDEP?
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The exact cause is not yet known
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Some common theories causing SUDEP include:
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Heart arrhythmias (abnormal heart rhythms)
Breathing trouble
Lack of protective brain chemicals
A combination of causes
Who is at risk for SUDEP?
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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:
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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
Seizure Control
Risks in Perspective
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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]
How can I reduce the risk of SUDEP?
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Reduce number of seizures
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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
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“TRUST”
Seizure safety tips
When to call 911
Medication Control
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Take your medicine as instructed by your doctor
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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:
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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
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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
Where Can I Find Specialist Care?
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Poor seizure control? Too many side effects? Consider
seeing a specialist at a comprehensive epilepsy center
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www.efnj.com/content/info/epilepsy_centers.htm
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Epilepsyfoundation.org
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Find closest local affiliate
National Association of Epilepsy Centers
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www.naecepilepsy.org/find.htm
Video-EEG monitoring: why it’s so
important
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About 1/3 of patients with refractory seizures do not
actually have epilepsy
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The majority (60-90%) of patients undergoing the most
common types of epilepsy surgery have no further
seizures afterwards
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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
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What should I do if someone is having a seizure?
 “ TRUST ”
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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
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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
When should I call 911?
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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
Seizure Safety Tips
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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)
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Keep shower drains unclogged
Do not lock bathroom door
If possible, cook with someone else around
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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).
Safety Devices to Prevent SUDEP
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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
SmartWatch by SmartMonitor
Emfit Movement Monitor (outside US
and Canada: Emfit Tonic-Clonic Seizure
Monitor
Aremco
Neurovista
NeuroPace
High Tech?
Why wasn’t I told about SUDEP?
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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:
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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
Where can I learn more about SUDEP?
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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
Where can I get support?
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Contact your local Epilepsy Foundation for support
groups
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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
What is being done to help prevent
SUDEP or determine its cause?
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More than ever before
Many international meetings
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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
 June 21-24, 2012 (location to be announced)
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NIH SUDEP “Center Without Walls” grant
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Center for Disease Control: registry?
Areas of active research
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Animal models, devices, seizure monitoring equipment, etc
A Special Thanks
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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
Contributors to this presentation
Lawrence Hirsch, MD
Evan Fertig, MD
Eric Geller, MD
Madeline Fields, MD