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

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 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 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 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

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 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, 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 specific seizure triggers if you have any

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

not actually have epilepsy Many other explanations for spells

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

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 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 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).

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

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?

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 are 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 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 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 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