Seizure-Related Emergencies
Status Epilepticus and SUDEP
Evan Fertig MD, Northeast Regional Epilepsy Group
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 doesn’t 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
Status Epilepticus
A medical and neurologic emergency
55,000 deaths in U.S. per year
Early recognition and treatment are essential
“TIME IS BRAIN”
Questions, questions, questions Why did Edward go into Status Epilepticus?
How could it have been prevented?
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
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”
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
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]
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
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. Low drug levels number 1 cause
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
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
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