DANIEL FRIEDMAN, MDASSISTANT PROFESSOR OF NEUROLOGY

NYU COMPREHENSIVE EPILEPSY CENTER

Seizure Safety and Seizure Risk: From First Aid to

SUDEP

Outline

Seizure First AidSeizure-related injuriesStrategies for preventionEpilepsy and drivingSeizure-related mortalitySudden unexpected death in epilepsy

(SUDEP)

Seizure First Aid

What should I do if my family member has a seizure?

What should I tell my family to do if I have a seizure?

Complex partial and absence seizures

Observe the person and gently move the person away from danger (e.g. hot stove, stairs, road) Careful to avoid restraining people during seizures

unless there’s immediate dangerSpeak in reassuring voiceStay with the person until they are fully

awareExplain to others what is happening

From www.epilpesyfoundation.org

Generalized tonic-clonic seizures

Stay calm and reassure bystanders Don’t restrain the person Keep track of time (90% of seizures stop after

2 min) Clear the area of potential hazards and loosen

collar or tie Turn the person on their side to help clear

secretions Do not force as shoulder dislocation can occur If necessary, wait until the seizure is over

DON’T PUT ANYTHING IN THE MOUTH Stay with the person until the seizure ends

and consciousness is back to normal Speak calmly to the person and let them know

what happened

From www.epilpesyfoundation.org

When to call 911

Most seizures stop on their own and there are few lasting effects; EMS is usually not needed unless:

There is no known history of epilepsy

The seizure occurred in the waterThe person is pregnant or diabeticThe seizure lasts > 5min or they

come one after anotherThe person does not wake up

appropriatelyThere is injury due to the seizureThere is difficulty breathing

Emergency Plans

Discuss with your doctor what to do if you have a seizures Some patients with a tendency to have prolonged

seizures or repetitive seizure may benefit from a rescue medication Benzodiazepines

Rectal Valium (Diastat™) Intranasal Midazolam (Versed™) Lorazepam tablets (Ativan™) Clonazepam tablets or wafers (Klonopin™)

When to call 911, when to call the office

Seizures and Injuries

~15-20% of patients will have at least one seizure related injury

Most common are:Bruises, lacerations/abrasions, fractures,

concussions, sprains, burnsHowever, rates of injuries are only ~5%

higher in people with epilepsy compared to general population

Kwan et al. Epilepsia 2010

Falls & Fractures

Most common cause of injury in epilepsyFalls may be due to

Seizure Post-ictal state Side-effects of medications

Most falls do not lead to significant injuryFractures can also occur from the seizure

itself Compression fractures, clavicular fractures, shoulder

fracturesConcusions can occur in ~10% of seizure-

related falls

Burns

About 5% of patients with epilepsy will get burns requiring medical attention

Burns are more common in patients with epilepsy

Often related to falls or loss of awareness : Kitchen while cooking In the bathroom with hot water running Radiators Smoking Ironing Drinking hot beverages

Drowning

People with epilepsy are 15 x more likely to drown than the general population Swimming and bathing Risk is even higher inc children,

mostly in bathtubs

Prevention strategies

General Strategies:Strive for optimal seizure control Discuss drug side effects with doctorDiscuss your risks of osteoporosis with your

doctor Weight bearing exercise Calcium and vitamin D Screening tests when indicated

Appraise your situation: What would happen if you were to have seizure?

Kitchen & Bathroom safety

If possible, cook with someone else aroundUse rear burners, insulated pot handles

(facing inward)MicrowavesCovered cups when drinking hot beveragesLimit use of glass containers, knives as much

as possibleUse rubber gloves when washing dishes or

cutting

Kitchen and bathroom safety, cont.

Set boiler thermostat to <110 deg (saves money, too)

Use single handle shower fixtures with scald guards or thermal regulator valves

Always turn cold water on firstUse shower curtains or doors that swing outNon-skid padsDon’t bath alone (and don’t bath your child

alone)Keep the bathroom door unlockedHang doors to open outward

Home safety

Don’t climb ladders aloneDon’t light candles or fires while alonePower tools should have automatic shutoffUse rugs, especially on hard surfaces like tileLimit clutter, sharp corners

What if you live alone?

Have routine check ins with friends, family or neighbors

Consider giving multiple reliable people keys to your home

Consider medical alert device/service (e.g. Philips Lifeline™)

Sports and Recreation

Never swim, ski, hike alonePools are preferable to open water

Let the lifeguard know you have epilepsyWear helmets and protective equipment while

biking, skiingStay clear of ledgesWear life vests while boatingAvoid free weights, treadmills at the gymBefore engaging in an activity, ask: what

would happen if I had a seizure?

Driving & other transportation

Having even a brief seizure with altered awareness while driving can be deadly though seizure related car accidents are rare Laws in NY, NJ mandate 1

year of seizure freedom prior to driving; 3-6 mo in CT Period can be shortened if

seizure is deemed unlikely to occur Determined by Neurological

Disorders Committee in NJ Determined by MD in NY

Prevention

Honor and obey your states restrictions regarding driving and seizures

Avoid driving when reducing or making medication changes – discuss with your MD

If you have an aura, pull over as safely and quickly as possible

Avoid missing medications or other provocative factors

Epilepsy Mortality

Epilepsy mortality is ~2.3 x higher than the general population

Common causes of death in epilepsy included: Progression of underlying condition Status epilepticus Drowning Suicide Pneumonia Sudden death

Sudden unexpected death in epilepsy

Definite: The sudden, unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death in patients with epilepsy with or without evidence for a seizure in which postmortem examination does not reveal a structural or toxicological cause for death Excluding status epilepticus

Probable: sudden deaths occurring in benign circumstances with no known competing cause for death but without autopsy

Possible: limited information regarding death circumstances or there is a plausible competing explanation for death

Nashef, 1997; Annegers, 1997

Incidence of SUDEP

Sudden death is ~24x more common in people with epilepsy compared with the general population

Most common condition-related cause of death in chronic epilepsy

100-fold range in SUDEP incidence within the epilepsy population 0.09/1000 in prospective community-based studies of

newly diagnosed patients 9/1000 in epilepsy surgery candidates

SUDEP Rates

10

8

6

4

2

0SUD

EP ra

te (p

er 1

000

pers

on-y

ears

)

Children

Population-based Cohorts

Epilepsy

Patients

MR Patients

Refracto

ry Patients

Surgi

cal P

atients

(10)

(7)

(3)

(4)

(3)

(4)

In comparison

Risk of death from epilepsy surgery is ~1/1500 Refractory epilepsy patients have the same risk of

death in about 1 month

Risk Factors

Case-control studies have identified several factor associated with SUDEP risk

Factors associated with increased SUDEP risk

Factors associated with decreased SUDEP risk

Frequent GTCs Seizure freedom

Subtherapeutic AED levels Sharing bedroom/monitoringAED PolytherapyEarly age of epilepsy onset/longer duration of epilepsyYoung ageMale sexMental retardation

Reviewed in Tomson et al Lancet Neurol 2008

Consistent Risk Factors

Increased GTCS frequencyPolytherapyIncreased duration of epilepsyEarly age of onset

Hesdorffer et al. 2011

When does SUDEP occur?

Sillipana & Shinnar 2010

Mechanisms of SUDEP

Witnessed, EMU-recorded, and post-mortem studies all support a seizure, typically GTC, as the terminal event

Three main mechanism emerge from EMU observed cases: Primary respiratory causes: central or obstructive

apnea Cerebral shutdown: diffuse post-ictal suppression of

EEG preceding EKG or respiratory changes Cardiac arrythmias

Resipiratory

Seizures can caused decreased oxygenationSeizures can reduce the drive to breath

(apnea)Some SUDEP may be failure to recover from

these breathing problemsSerotonin may play an important role

Brain Shutdown

After a seizure, shutdown in brain function can: Reduce drive to breath Limit protective reflexes

E.g. turning over when face is in pillow

Cardiac Arrhythmias

Seizures may lead to heart arrythmias in some

Some people may already have underlying heart disease Seizure is the ultimate stress test

Most people have normal heartsSome people may carry genes that

predispose them to arrythmias Some gene defects can predispose individuals to

BOTH epilepsy and heart arrythmias

Preventing SUDEP

No intervention is proven to prevent SUDEPTarget modifiable risk factors:

Optimize seizure control, especially GTCS Medications, surgery, devices if appropriate Compliance Lifestyle factors: good sleep, avoid excess alcohol

Limiting # of total drugs? Supervision?

Bed alarms Baby monitors Room sharing

Seizure alarms

No evidence that they prevent SUDEP

Not FDA approved for that purpose

Frequent false alarms with current models may limit use

Costly ~$800-1000Baby monitors are

affordable

Seizure Alarms – future horizons

Watch based devices?more reliableLinked to

phones/pagersPortableSmartphone

applications

Anti-suffocation pillows

Special pillows to prevent complete occlusion of the face when the person is face down

Not proven to prevent SUDEP

For more information

 www.sudep.org  www.epilepsy.com www.sudepaware.org

www.epilepsyfoundation.org

Questions?