Marcelo Lancman, MD
Medical Director,
Northeast Regional Epilepsy Group






Breakthrough seizures
Seizure clusters
Prolonged seizures (status epilepticus)
Sudden unexpected death in epilepsy (SUDEP)
Seizure-related injuries
Preparedness plans

Perspectives
◦ Person with epilepsy (PWE)
◦ Caregiver
◦ Healthcare provider (nurse, MD)




How to recognize them?
What to do ?
How to prevent them?
How to prepare?




The severity and urgency depends on seizure
type, seizure duration and external
circumstances
Some seizures are more dangerous than
others
Most seizures are self limited and there is no
need for urgent intervention
Only a few need urgent care…and we need to
be prepared for those

Simple partial (lower risk)
◦ Sensory, motor, auditory, visual, psychic, autonomic

Complex partial (moderate risk)





Absence (lower risk)
Atonic (higher risk)
Tonic (higher risk)
Clonic/myoclonic (moderate risk)
Tonic-clonic (higher risk)






Safety measures
When to worry?
When to call 911?
When to go to the hospital?
When to call your doctor?
When to use rescue medications?







Clear the way: keep other people out of the way
Move objects that could injure PWE
Important to keep calm and track the time and
characteristics of the seizure
Check if there is any information regarding
seizure or epilepsy type on bracelet or necklace
Turn PWE on his/her side to keep airway clear
Cushion head
Loosen any tight neckwear
8



Do not try to stop movements related to the
seizure or hold down PWE
Do not put anything in the PWE’s mouth during a
seizure
After the seizure, remain with PWE until
awareness of surroundings is fully regained
9








First time seizure (since you do not know this
behavior)
Seizures lasting more than a few minutes (5?)
Repeated seizures without regaining
consciousness
Increase in frequency of seizures
Different seizure types occur
PWE is injured, pregnant or with known
associated medical condition
Seizure occurs in water
Difficulty breathing
10



When to call 911? (when you have any of the
“worry” signs)
When to go to the hospital? (It is better to call
911 and have EMT trained personnel take
care of the PWE)
When to call your doctor? (whenever you do
not know what to do. However, if it an
emergency call 911 first)



What are rescue medications?
What are the side effects and possible
complications?
Routes of administration:
◦
◦
◦
◦
◦
◦
◦
Oral medications
Buccal
Sublingual
Rectal
Intranasal
Intramuscular
Intravenous

What are rescue medications?
◦ Medications that act very fast and can break
seizures
◦ They are usually not effective as routine
antiepileptic treatment
◦ It needs to be possible to administer them safely
(oral, sublingual, rectal, nasal, intramuscular,
intravenous)
◦ They need to be available all the time to PWE and
caregivers

What are side effects
◦ Sleepiness
 May facilitate aspiration
◦ Respiratory depression
 May cause breathing problems






Ativan, Valium, Klonopin
May be difficult to administer during a
seizure
Very useful if there is an aura
Risk of injury by trying to put medication in
mouth
Risk of aspiration
Never give liquids with medication during a
seizure

Between gums and cheek

Problems: gagging, coughing and aspiration

Klonopin wafers
◦
◦
◦
◦
◦
◦
Get absorbed faster than oral medications
May be difficult to administer during a seizure
Very useful if there is an aura
Risk of injury by trying to put medication in mouth
Risk of aspiration
Never give liquids with medication during a seizure



Used in acute or emergency situations to stop
a seizure that will not stop on its own
Approved by FDA for use by parents and
non-medical caregivers
State/school district regulations often govern
use in schools
20

Rectal Diastat
◦ Clinically proven
◦ Hard to give
◦ Adults don’t like it
◦ Can’t self administer


Easy to administer
Increases production of nasal mucous and
congestion

Easy to give

Preferred route


Can be selfadministered or
given by caretaker
Under study

Valium, Ativan, Midazolam (Versed)
◦ Rapid effect
◦ Needs caregiver to be trained
◦ Only in rare occasions
◦ Midazolam IM

The seizure threshold
◦ What is the seizure threshold?
 The amount of activity necessary to bring
a seizure on.
 We all have a seizure threshold
 It is lower in PWE
◦ What can change it?
◦ The importance of knowing

Seizure triggers:
◦
◦
◦
◦
◦
◦
Missing medication doses (pill organizers, alarms)
Alcohol and drugs
Stress
Environmental temperature
Lights
Fever/illness

Seizure triggers:
Hormonal changes
Hyperventilation
Sleep deprivation
Medications and supplements (very important to
discuss with your doctor every time you take any
new medication for any reason or any
supplements—many can provoke seizures)
◦ Travel across time zones
◦
◦
◦
◦

What are seizure clusters
◦
◦
◦
◦
They start and stop but occur one after another
The can last a very long time
They can lead to injuries and complications
They need to be treated aggressively

Types of medications
◦
◦
◦
◦
◦
◦
◦
Oral
Buccal
Sublingual
Rectal
Intranasal
Intramuscular
Intravenous




What is status epilepticus?
What to do?
Why?
What are the consequences if we do not act in
a timely manner?


Formal Definition: seizures that do not stop
for 30 minutes. Or they happen on and off
without regaining consciousness between
seizures
Practical definition: 5 minutes

Types
◦
◦
◦
◦
Partial motor status epilepticus
Generalized convulsive status epilepticus
Non-convulsive status epilepticus
Myoclonic status epilepticus



This prolonged seizure involves just one part
of the brain.
The person is awake and talking/interacting
normally, but has persistent rhythmic jerking
on one side of the body, say the hand, arm or
face.
It requires emergency treatment, but is not
usually as life-threatening as other forms.


This prolonged seizure involves the entire
brain, and produces convulsive activity in all
four extremities coupled with a lack of
responsiveness.
This life-threatening condition requires
urgent medical evaluation and treatment.


This seizure, which could involve part of the
brain or the entire organ, is far less dramatic
than generalized convulsive status
epilepticus, and produces subtle symptoms
such as blinking, staring or confusion – or no
obvious signs at all. It is less dangerous than
the generalized convulsive type, but still
requires prompt recognition and treatment.
A continuous EEG recording is the only way to
diagnose non-convulsive status epilepticus.


Another seizure that involves the entire brain,
this form produces prolonged jerking of all
four extremities.
It is usually caused by a profound lack of
oxygen to the brain due to heart dysfunction,
but may also occur in those with myoclonic
epilepsy.






One of the most common life-threatening
neurological disorders
Incidence: 50,000 to 200,000 cases annually in US.
Around 12% of patients with newly diagnosed
epilepsy present with status epilepticus
Within 5 years of initial diagnosis of epilepsy, 20%
of patients will have status epilepticus
Mortality rate: 3 to 53% (20%)
55,000 deaths in U.S. per year

Cause: Unknown in 25 to 40% of cases

Age: elderly > pediatric > adult

Most common causes:
◦
◦
◦
◦
◦
◦
◦
◦
Missing medications
Stroke
Alcohol withdrawal
Metabolic disorders
Hypoxia
Infections
Tumors
Trauma

Effects on the body
◦ Hyper-sympathetic state (increased HR,
dysrhythmias, decreased cardiac
output, increase in peripheral
resistance, increase in BP followed by
decreased BP)
◦ Hyperpyrexia (increased body
temperature) (central, infection or
increase in muscle activity)- neuron
damage
◦ PH decreases
◦ Hyperglycemia (increase in
catecholamines)

Effects on the brain
◦ Early stage:
 Increased oxygenation
 Increased blood flow (increased BP)
◦ Late stage:
 Decreased oxygenation
 Decreased blood flow
 High requirement of energy with low supply 
brain injury
 Decreased glucose and increased lactate

Clinical assessment:
◦ Exam: trauma, infection
◦ Drugs: ciprofloxacin, baclofen, flumazemil,
interferon, ifosfamide, theophyline, isoniazid,
alcohol withdrawal, cocaine
◦ Infections: Mycoplasma pneumonia, catscratch encephalopathy, herpes simplex, AIDS
◦ Tumor (metastases), cortical dysplasia

Labs

Neuroimaging
◦ Glucose level, electrolytes, CBC, toxic screen,
LFTs, AEDs levels, urine, ABG (hyponatremia,
hypernatremia, hypercalcemia, hepatic
encephalopathy)
◦ EKG
◦ Others: mixedema, hyperparathyroidism
◦ LP: if infection suspected
◦ CT/MRI
EEG and VEEG
◦ Rule out psychogenic seizures
◦ Classify type of SE


This is an emergency where time is of the
essence
Steps:
◦
◦
◦
◦
◦
Control of airway and ventilation
Arterial blood gas monitoring
EKG and BP monitoring
IV: glucose and Thiamine
Blood work: CBC, CPM, electrolytes and AED levels

Pharmacological treatment
◦ Benzodiazepines loading
 Lorazepam
 Diazepam
◦ Phenytoin or Fosphenytoin loading
◦ If no response:
 Phobarbital, Depakon, Keppra, Vimpat
◦ Refractory:
 ICU: midazolam, propofol and pentobarbital

EMERGENCY SITUATION

TIME IS OF THE ESSENCE

DELAY IN TREATMENT COULD RESULT IN
BRAIN DAMAGE OR DEATH

What is SUDEP?
◦ SUDEP stands for Sudden Unexpected Death in
Epilepsy.
◦ SUDEP could be the possible cause of death when
there is no evidence of trauma or drowning and
there is no other clear cause of death (Heart attack,
etc.)
◦ SUDEP is believed to be the cause of approximately
10% of seizure related deaths.
◦ Unfortunately, due to the unpredictable nature of
SUDEP it remains an understudied phenomena.
◦ Our understanding of this process is very limited
and much remains to be investigated about these
occurrences and what causes them.
◦ Thankfully, SUDEP is relatively rare, occurring in
about 1 out of 1000 patients with epilepsy per year,
but its consequences can be catastrophic

All patients with Epilepsy are at some risk

Higher risk:
◦ Long history of poorly controlled seizures (risk of 1 in
150)
◦ Patients with generalized tonic-clonic seizures ‘Grand
Mal’
◦ SUDEP also appears to typically affect younger adults
with epilepsy. (Approximately 75% of all SUDEP deaths
occur in individuals between 20 to 50 years of age)

Children, have a relatively lower risk of SUDEP.




Patients with varying degrees of cognitive or
neurological impairment.
Poor compliance with medications
Use of alcohol or illicit drugs
Nocturnal seizures

Not completely understood, but there are
several theories:
◦ There is interruption of cardiac (cardiac arrest,
arrhythmias) or respiratory function
◦ The brain is highly interconnected with the heart
and respiratory functions
◦ Seizures could disrupt that connections



Patients and families must work together with
their doctors to obtain optimal seizure
control.
Taking anti-seizure medication consistently
and regular follow ups with the patient’s
health care provider are key.
Autopsies show that many of those who die
from SUDEP have low levels of antiepileptic
medications in their system.



Maintain a regular sleep schedule (including
when traveling across time zones)
Avoid alcohol and illicit drugs
There is a growing number of safety devices
that have appeared on the market (none are
FDA approved however)




Devices to monitor seizures to alert
caregivers when a seizure is happening
They achieve this by recognizing rhythmic
movements or detecting changes in heart rate
which can occur during a seizure
Low tech options include baby monitors to
other more sophisticated devices
Seizure service dogs


Failure to detect all seizures
False alarms:
◦ occur when the bed exit alarm function is in use
and the patient gets out of bed to go to the
bathroom.
◦ Other false alarms can occur if an individual is
particularly restless at night


There is no device proven to prevent SUDEP
Some devices are marketed but have not been
studied

Some devices are currently under study

Speak to your MD before purchasing
Sleep Safe Pillow
Air passes through contoured surface
and body of the pillow
Pulse Oxymeter
Non-invasive medical devices that attach
to a fingertip or a toe to measure heart
rate and blood oxygenation percentage


Knowledge of SUDEP and the factors that are
thought to increase the chances of being
affected by it are crucial to its prevention.
It is important to develop a management plan
for the seizure events, and family and friends
should learn basic life support skills.







Increased incidence of head and soft tissue
injuries
Tongue and mouth lacerations
Submersion (10 fold)
Fractures (2 fold)
Burns (3% of burn units admissions)
Car accidents
Sport related injuries


Confusion: may walk into a dangerous area
Aspiration pneumonia

In Case of Seizure:

Please keep calm and stay with me until the seizure ends.

These symptoms/behaviors will tell you that I’m having a
seizure: (list specific characteristics of your seizures, for
example, falling, jerking limbs, etc.)
_______________________________________________________________
__
The things you should do to ensure my safety are: (for example,
gently move me away from danger, if possible; loosen any
restrictive clothing, etc.) ___________
_________________________________________________________________


Please do not put anything in my mouth during the seizure!


Please observe me carefully so you can describe
everything you saw during the seizure. I’ll report what
you’ve said to my doctor and it may help with my
treatment.
Please call 911 if the seizure is prolonged (lasts
longer than two to three minutes), is associated with
breathing difficulties, causes injury, or becomes a
series of seizures. Brief seizures that end
spontaneously without injury do not require a 911
call, but may require a call to my doctor. My doctor’s
phone number is:
____________________________________________________
_____________



If several seizures occur in a row, please give me my rescue seizure
medication as follows: (list instructions obtained from your doctor. If you
wear a VNS, include instructions to swipe it once over the implant.)
_________________________________________________________________
__________________________________________________________________
After the seizure, please help me find a place to rest. It is also important
that I get regular meals and take my seizure medications on schedule.
If you have a school-age child with epilepsy, the Seizure Preparedness
Plan should be given to the school nurse or other appropriate school
official, as well as the teachers, coaches, camp director, camp counselor,
babysitters and anyone else who may be caring for the child.

Make your home as safe as possible by doing the following:

Make sure that your floors are carpeted and any sharp corners (e.g.,
table corners) are padded to reduce the risk of injury due to a fall.

Don’t smoke.

Don’t light a fire or a candle when you are home alone.

Make sure the drains in your bathtub and shower are working properly
to prevent drowning should you lose consciousness while showering.

Set your water temperature to a moderate level to avoid being scalded if
you lose consciousness while running the hot water.

Don’t take a bath in deep water, to prevent drowning.

Don’t lock the bathroom door, use an “occupied” sign on the doorknob instead.

Install a bathroom door that opens outward for easier access, in case you have a
seizure and fall against the door.

Use plastic glasses and dinnerware instead of glass and china to keep from cutting
yourself if you lose consciousness while holding them.


Some people also use medical alert systems that notify emergency personnel that
they’ve fallen and need assistance. Baby monitors can be helpful to parents of
babies or young children who have epileptic seizures during sleep, as they can
pick up unusual sounds.
I’m often asked about epilepsy detectors, which are devices that monitor
breathing, and/or detect urine or vomit in the bed and send warning signals if
something is amiss. While it’s an intriguing idea, none of them are FDA-approved
for home use.

Always tell your family and/or friends where you are going and when
you expect to return.

Wear a Medic-Alert bracelet and/or jewelry printed with your medical
information.

Put your emergency contact numbers on speed-dial on your cell phone.

Don’t drive without medical permission.

Keep a supply of rescue medication on hand.

Stay away from the tracks at train and subway stations.

If you fall frequently during seizures, consider taking an elevator instead
of the stairs or an escalator.

Give your friends and family a copy of your travel itinerary, with
phone numbers and addresses where you can be reached.

Become familiar with the hospitals in the areas you are visiting, in
case of emergency.

Bring an adequate supply of seizure medication with you. Carry on
the plane with you. Do not put in luggage.


If the trip is a long one, consider finding a medical provider in the
area to provide refills. However, be aware that not all countries have
access to every seizure medication prescribed in the United States.
Find out in advance which ones are available, and talk to your doctor
about other medicines that are acceptable.
Longer flights and jet lag can cause disrupted sleep, which can
trigger a seizure. Talk to your doctor about getting a prescription
sleep aid for the trip.

Avoid excessive alcohol.

Eat regular meals.



Don’t forget to consider time zone changes when taking
your medications. Take the medication as close as
possible to the time you would be taking it at home.
If you travelling to a foreign country, consider learning
basic phrases to request medical assistance such as “I
need help” and “Where is the hospital?” Even better, travel
with someone who knows the native language.
Prepare a plan for an emergency trip back home. Discuss
this plan with someone you trust before you go.

Wear a Medic-Alert bracelet/necklace that includes a description of your
seizure(s).

Carry a list on your person of all of your current medications (plus enough
medicine to last you from start to end of your trip).

Carry emergency contact information on your person, either on an index card or
numbers programmed into your cell phone and listed under contacts as ICE (In
Case of Emergency).

Disclose your seizure history to transportation personnel and provide them with a
letter from your doctor.

Let the flight attendants, conductor or driver know that you have epilepsy.

If you have a VNS device implanted, carry a VNS registration card so that people
will know that you cannot get an MRI, should not have deep heat treatment and so
on.
PRECAUTIONS
ACTIVITY
Baseball
● Wear protective clothing:
elbow or knee pads
helmet
protective eyeglasses or goggles
Basketball
● Wear protective clothing:
elbow or knee pads
consider a helmet
protective eyeglasses or goggles
Bike Riding
●
●
●
●
Avoid busy streets
Ride on bike paths
Ride on side streets
Wear a helmet
Boxing
● High risk activity - should be avoided by all
Bungee
Jumping
● High risk activity - should be avoided by all
Canoeing/
Kayaking
Football
Gymnastics
● Never canoe/kayak alone; take a “buddy” who
knows seizure first aid.
● Always wear a high quality, well-fitting life vest
when near the water to prevent drowning.
● Wear protective clothing:
elbow or knee pads
helmet
protective eyeglasses or goggles
● Have a “buddy” when using equipment like balance beams,
parallel bars or when vaulting
● Consider a helmet when using a balance beam or
parallel bars or when vaulting
● Consider a shock-absorbing mat
● Take frequent breaks
● Keep hydrated
*Hang Gliding
Horseback
Riding
Ice Hockey
Jet Skiing
● High risk activity - should be avoided by
individuals with uncontrolled seizures
● Wear protective clothing:
elbow or knee pads
helmet
 protective eyeglasses or goggles
● Wear protective clothing:
elbow or knee pads
helmet
 protective eyeglasses or goggles
● High risk activity - should be avoided by
individuals with uncontrolled seizures
Martial Arts:
Karate, Tai
Kwando, Judo
● High risk activity - should be avoided by
individuals with uncontrolled seizures
*Mountain
Climbing
● High risk activity - should be avoided by
individuals with uncontrolled seizures
Pilates
● Consider a shock-absorbing mat
● Have a ‘buddy” when using equipment
● Take frequent breaks
● Keep hydrated
*Rappelling
● High risk activity - should be avoided by
individuals with uncontrolled seizures
*Rock Climbing ● High risk activity - should be avoided by
individuals with uncontrolled seizures
Rollerblading
● Wear protective clothing:
elbow or knee pads
helmet
 protective eyeglasses or goggles
Rugby
● Wear protective clothing:
elbow or knee pads
helmet
protective eyeglasses or goggles
*Scuba Diving
● High risk activity - should be avoided by
individual with uncontrolled seizures
Skateboarding
● Wear protective clothing:
elbow or knee pads
helmet
 protective eyeglasses or goggles
Skiing
●
●
●
●
●
Dress for warmth
Wear protective gear
Consider a safety strap when riding the t-bar
Have a “buddy”
Don’t go off open trails
Snorkeling
● High risk activity - should be avoided by
individuals with uncontrolled seizures
*Skydiving
● High risk activity - should be avoided by
individuals with uncontrolled seizures
Soccer
● Wear protective clothing:
elbow or knee pads
helmet
protective eyeglasses or goggles
Surfing/Wind
Surfing
Swimming
● High risk activity - should be avoided by
individuals with uncontrolled seizures
● Never swim alone. Have a “buddy” who knows
seizure first aid
● Always wear a high-quality, well-fitting life vest
when near the water to help prevent drowning.
● Inform the lifeguard about your condition if
swimming in a pool
Tai chi
● Consider a shock-absorbing mat
● Take frequent breaks
● Keep hydrated
Yoga
● Consider a shock-absorbing mat



Follow state laws
If you have regained your driving privileges,
be safe and avoid driving if you are tired or
have any known risks for seizures
Don’t hide seizures from your doctor to avoid
losing your driver’s license

Complications and emergencies are rare

But, always be prepared!