Transcript Sudden Unexpected Death in Epilepsy (SUDEP)
Seizure-Related Emergencies
Status Epilepticus and SUDEP
Evan Fertig MD, Northeast Regional Epilepsy Group
I think I will call myself “BRAIN”
Outline
Status Epilepticus SUDEP Causes Prevention Devices Seizure Safety
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
“
TIME IS BRAIN
”
55,000 deaths in U.S. per year Early recognition and treatment are essential
Why is Status Different than Usual Seizures?
Time 0 • Seizure Starts 1 minute • Most seizures stop here!
5 minutes • Operational Definition 30 minutes • Official Definition Lowenstein: Epilepsia 1999;40:120-2
Seizure Types
Generalized Focal Focus
Classification of Seizures
Partial - Onset Generalized - Onset
Simple partial Complex partial Secondarily generalized Absence Myoclonic Generalized tonic-clonic Tonic Clonic Atonic
Not all Status Epilepticus is Created Equal
Usually Absence and Other No convulsions, other features Not as dangerous (except Myoclonic) Unresponsive Generalized Convulsive Obvious convulsions Dangerous Unresponsive Nonconvulsive Subtle or absent convulsions More Dangerous
Why is Status Epilepticus Dangerous?
Heart • Low Blood Pressure • Arrhythmias Lungs • Breathing Problems • Aspiration • Lung clots Brain • Brain cell death?
Treatment of Status Epilepticus
Lungs
• Breathing tube may be needed • Intensive Care • Treat infections with antibiotics
Heart and Blood Pressure
• IV lines • IV fluid • Heart monitor
Brain
• Seizure medications by IV • Drug-induced coma • EEG monitor
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 Ep
ilepsy stands for
S
udden
U
nexpected
D
eath in 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]
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 – sure seizures are under control this time is better spent making 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
Seizure Safety
What should I do if someone is having a seizure?
“ TRUST ”
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
S
tay calm and stay with the person
NOT
a pillow!)
T
ime 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
High Tech?
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