- I'D LIKE TO WELCOME YOU ALL
	TO THIS PATIENT CAREGIVER CALL
	
	TITLED "SEIZURE FIRST AID
	AND OTHER SAFETY CONCERNS
	
	FOR PEOPLE WITH EPILEPSY."
	
	MY NAME IS SEAN GAMBLE,
	AND I'M FROM THE EMPLOYEE
	
	EDUCATION SERVICE IN ST. LOUIS,
	
	AND I'M THE PROJECT
	MANAGER FOR THIS CALL.
	
	YOUR LINES ARE MUTED AND
	WILL BE OPENED UP AT THE END
	
	OF PRESENTATION WHEN WE
	ARE READY FOR QUESTIONS,
	
	BUT PLEASE LIMIT YOUR
	QUESTIONS TO ONE OR TWO PER
	
	PERSON TO ENSURE EVERYBODY
	HAS A CHANCE TO ASK.
	
	TO COMPLETE THE EVALUATION FOR
	THIS PROGRAM, PLEASE FOLLOW
	
	THE LINK FOUND IN THE BROCHURE
	OR THE LINK THAT WAS FOUND
	
	FROM THE EPILEPSY CENTER OF
	EXCELLENCE THAT WAS SENT OUT.
	
	IF YOU DO NOT HAVE ACCESS
	TO THE VA WEBSITE, IF YOU'RE
	
	A PATIENT, YOU CAN CONTACT
	ME AT SEAN.GAMBLE@VA.GOV,
	
	AND I WILL SEND
	YOU A HARD COPY.
	
	NOW I'D LIKE TO WELCOME
	OUR SPEAKER FOR TODAY,
	
	DENISE RILEY.
	
	- THANK YOU, SEAN.
	
	WELCOME, EVERYONE.
	
	I HOPE YOU CAN
	HEAR ME CLEARLY.
	
	I'M HERE IN SUNNY,
	WINDY FLORIDA.
	
	SO ON BEHALF OF THE
	VA'S EPILEPSY CENTERS
	
	OF EXCELLENCE, IT'S MY GREAT
	PLEASURE TO MAKE TODAY'S
	
	PRESENTATION ON SEIZURE FIRST
	AID AND SAFETY CONCERNS.
	
	MY GOAL IN TODAY'S
	PRESENTATION IS TO PROVIDE YOU
	
	WITH SOME PRACTICAL
	INFORMATION AND GUIDANCE
	
	ON SAFEGUARDING THOSE
	WHO HAVE EPILEPSY.
	
	IF YOU HAVE SEIZURES, TELLING
	OTHERS CAN ACTUALLY SAVE YOUR
	
	LIFE BECAUSE IT'S IMPORTANT
	THAT YOUR FRIENDS AND FAMILY
	
	KNOW WHAT TO DO AND WHAT
	NOT TO DO IF YOU'RE HAVING
	
	A SEIZURE.
	
	AND TELLING PEOPLE ABOUT YOUR
	SEIZURES ALSO HELPS CLEAR
	
	MISCONCEPTIONS ABOUT
	EPILEPSY...
	
	- SOMEONE HAS
	ENTERED THE CONFERENCE.
	
	- AND PROMOTES
	EPILEPSY AWARENESS.
	
	I'VE BROKEN DOWN TODAY'S
	PRESENTATION INTO THE
	
	FOLLOWING CATEGORIES: FIRST
	AID, SEIZURE TRIGGERS, KEEPING
	
	YOUR HOME SAFE, TOBACCO
	AND ALCOHOL, MEDICATION,
	
	EMPLOYMENT, SPORTS, TRAVEL,
	SPECIAL CONSIDERATIONS
	
	FOR WOMEN, AND SUDEP, WHICH
	IS SUDDEN UNEXPECTED DEATH
	
	IN EPILEPSY.
	
	NOW, THERE ARE SOME BASIC
	GUIDELINES THAT SHOULD BE
	
	FOLLOWED NO MATTER WHAT
	KIND OF A SEIZURE A PERSON
	
	IS EXPERIENCING.
	
	- SOMEONE HAS ENTERED
	THE CONFERENCE.
	
	- SEAN,
	IS THERE ANY WAY WE CAN MUTE
	
	THE ENTERING OF CONFERENCE?
	
	- LET ME FIND OUT.
	
	- THANK YOU.
	
	SO IF ALL YOU DO, KEEP CALM.
	
	PROTECT THE PERSON FROM
	INJURY, AND STAY NEAR THEM
	
	UNTIL HE OR SHE
	IS FULLY ALERT.
	
	DON'T HOLD THE PERSON SEIZING
	DOWN, AND DO NOT PUT ANYTHING
	
	IN THEIR MOUTH.
	
	DON'T GIVE THEM FOOD OR DRINK
	UNTIL YOU'RE SURE THAT THEY'RE
	
	FULLY ALERT, AND LOOK FOR
	ANY TYPE OF MEDIC
	
	ALERT IDENTIFICATION.
	
	SO WHEN WE LOOK AT SPECIFIC
	SEIZURES, LET'S START
	
	WITH SIMPLE PARTIAL SEIZURES,
	OR SEIZURES WHERE THERE IS NO
	
	ALTERATION OF THE
	PERSON'S CONSCIOUSNESS.
	
	THESE TYPES OF SEIZURES
	CAN MANIFEST THEMSELVES
	
	IN DIFFERENT WAYS.
	
	THERE CAN BE UNCONTROLLABLE
	SENSATIONS, SUCH AS
	
	HALLUCINATIONS, FUNNY SMELLS,
	OR VISUAL CHANGES; OR IT CAN
	
	MANIFEST ITSELF WITH
	PSYCHIC CHARACTERISTICS, LIKE
	
	UNCONTROLLED EMOTIONS,
	SENSATIONS OF DEJA VU,
	
	OR A DREAMY STATE.
	
	IT CAN ALSO BE AUTONOMIC
	CHANGES, LIKE INCREASED HEART
	
	RATE; PALE FACE; ENLARGED,
	DILATED PUPILS.
	
	AND LASTLY, IT CAN BE
	UNCONTROLLABLE BODY MOVEMENT.
	
	SIMPLE PARTIAL SEIZURES,
	YOU USUALLY DON'T HAVE TO
	
	DO ANYTHING.
	
	JUST STAY CALM, AND REASSURE
	THE PERSON THAT THEY'RE SAFE.
	
	AND IF THE PERSON IS
	FRIGHTENED OR ANXIOUS,
	
	ENCOURAGE THEM TO TAKE SLOW,
	DEEP BREATHS, AND STAY
	
	WITH THEM UNTIL THE
	SEIZURE IS OVER.
	
	NOW, WHEN A PERSON HAS COMPLEX
	PARTIAL SEIZURES, OR SEIZURES
	
	WHERE THERE IS AN ALTERATION
	IN CONSCIOUSNESS, HE OR SHE IS
	
	NOT AWARE OF WHAT IS
	GOING ON AROUND THEM.
	
	SO IT'S IMPORTANT TO RECOGNIZE
	COMMON SYMPTOMS, SUCH AS BLANK
	
	STARING, CHEWING MOTIONS,
	FUMBLING WITH THE HANDS,
	
	PICKING OR RUBBING FINGERS,
	WANDERING AROUND,
	
	AND CONFUSED SPEECH.
	
	IT'S IMPORTANT TO
	TIME THE SEIZURE.
	
	AND STAY WITH THE PERSON,
	AND DON'T LET THEM
	
	WANDER AWAY.
	
	SPEAK CALMLY, EVEN THOUGH THEY
	MAY NOT UNDERSTAND WHAT YOU'RE
	
	SAYING TO THEM, AND KEEP
	THEM AWAY FROM ANY DANGER.
	
	IF THE PERSON TRIES TO RUN OR
	IS IN A DANGEROUS SITUATION,
	
	CALL OUT FOR HELP, AND HOLD
	THEM BACK IF YOU NEED TO TO
	
	KEEP THEM OUT OF THE DANGER.
	
	AND AGAIN, DON'T ASSUME
	THAT THEY CAN UNDERSTAND YOU
	
	AND FOLLOW INSTRUCTIONS.
	
	THE PERSON SHOULD BE FULLY
	CONSCIOUS AND AWARE
	
	BEFORE BEING LEFT ON THEIR OWN.
	
	MAKE SURE THEY KNOW THE DATE,
	WHERE THEY ARE, AND WHERE THEY
	
	ARE GOING.
	
	AND IF IT IS THE PERSON'S
	FIRST SEIZURE, OR AWARENESS
	
	DOES NOT RETURN,
	YOU SHOULD CALL 911.
	
	AND THE WITNESS TO THE SEIZURE
	SHOULD TELL THE PERSON WHO HAD
	
	THE SEIZURE AND EMS PERSONNEL
	WHAT HAPPENED AND HOW LONG
	
	THE SEIZURE LASTED.
	
	NOW, THE MOST COMMON TYPE OF
	SEIZURE WE ARE ALL FAMILIAR
	
	WITH IS A CONVULSIVE SEIZURE,
	OR WHAT WE USED TO CALL
	
	"GRAND MAL."
	
	AND THESE TYPES OF SEIZURES
	CAN ACTUALLY LAST A MINUTE OR
	
	TWO WITHOUT ANY HARM,
	AND USUALLY DO NOT REQUIRE
	
	A CALL TO 911 OR A VISIT TO
	THE EMERGENCY ROOM UNLESS,
	
	NUMBER ONE, IT'S THE PERSON'S
	FIRST SEIZURE; NUMBER TWO,
	
	THE SEIZURE LASTS 5 MINUTES
	OR MORE; NUMBER 3, AWARENESS
	
	DOES NOT RETURN; NUMBER 4,
	THE PERSON HAS A SECOND
	
	SEIZURE; NUMBER 5, IT'S A
	PREGNANT WOMAN; OR LASTLY,
	
	IF THE PERSON SUSTAINED AN
	INJURY, A SERIOUS INJURY.
	
	ONCE AGAIN, TIME THE SEIZURE.
	
	TRY AND ROLL THE PERSON ON ONE
	SIDE WITH THEIR HEAD AND MOUTH
	
	ANGLED TOWARDS THE GROUND SO
	THAT EXCESSIVE SALIVA
	
	ISN'T SWALLOWED OR INHALED.
	
	PUTTING THEM IN THIS POSITION
	ALSO PREVENTS THE TONGUE FROM
	
	FALLING BACK AND
	BLOCKING THE AIRWAY.
	
	AND PUT SOMETHING SOFT UNDER
	THEIR HEAD, LIKE A JACKET.
	
	LOOSEN THEIR CLOTHES BY
	UNFASTENING THEIR TOP SHIRT
	
	BUTTONS, THEIR BELT,
	AND THEIR PANT BUTTONS.
	
	AND ALSO REMOVE ANY
	EYEGLASSES OR NECK CHAINS.
	
	YOU DON'T HAVE TO WORRY IF
	THE PERSON HAS CONTACT LENSES.
	
	DON'T HOLD THE PERSON DOWN,
	AND AGAIN, DO NOT PUT ANYTHING
	
	IN THEIR MOUTH.
	
	[INDISTINCT]
	
	...AND IT CAN ALSO BE
	EMBARRASSING FOR THE PERSON TO
	
	AWAKEN TO A CROWD OF
	PEOPLE LOOKING AT THEM.
	
	SO AFTER THE SEIZURE IS OVER,
	THE EYEWITNESS SHOULD TELL THE
	
	PERSON WHO HAD THE SEIZURE
	WHAT HAPPENED AND HOW LONG
	
	THE SEIZURE LASTED.
	
	THEN THE PERSON SHOULD BE
	CONSCIOUS AND BE AWARE BEFORE
	
	BEING LEFT ON THEIR OWN.
	
	MAKE SURE THEY KNOW THE DATE,
	WHERE THEY ARE, AND WHERE THEY
	
	ARE GOING.
	
	IT'S RECOMMENDED THAT IF A
	PERSON HAS A HISTORY OF THESE
	
	CONVULSIVE SEIZURES THAT
	CLUSTER OR ARE PROLONGED THAT
	
	THE CAREGIVER HAVE MEDICATION
	SUCH AS DIASTAT OR LORAZEPAM,
	
	WHICH IS ATIVAN, ON HAND
	TO AVOID AND MINIMIZE
	
	SEIZURE ACTIVITY.
	
	EXACTLY WHAT PROVOKES A
	SEIZURE EVEN WHEN YOU'RE
	
	TAKING YOUR MEDICATIONS
	THE WAY YOU SHOULD?
	
	WELL, WE'VE ALL HEARD ABOUT
	SEIZURE TRIGGERS THAT ARE
	
	THINGS THAT SEEM TO INCREASE
	THE NUMBER OR SEVERITY
	
	OF SEIZURES, AND THESE SEIZURE
	TRIGGERS INCLUDE SLEEP
	
	DEPRIVATION, STRESS, ILLNESS,
	CERTAIN MEDICATIONS, ALCOHOL,
	
	RECREATIONAL DRUGS,
	AND CAFFEINE.
	
	I WANT TO STRESS THAT NOT
	EVERY PERSON IS AFFECTED THE
	
	SAME WAY, AND ALTHOUGH WE MAY
	NOT FULLY UNDERSTAND HOW THESE
	
	FACTORS TRIGGER SEIZURES,
	I THINK IT'S IMPORTANT FOR YOU
	
	TO HAVE A BETTER UNDERSTANDING
	OF WHAT WE DO KNOW.
	
	SO I'M GONNA START WITH
	THE MORE COMMON ONES.
	
	LET'S START WITH
	SLEEP DEPRIVATION.
	
	SLEEP DEPRIVATION RARELY
	OCCURS IN A VACUUM,
	
	BUT USUALLY IT'S IN
	ASSOCIATION WITH SOME SORT
	
	OF PHYSICAL OR EMOTIONAL
	STRESS, AND SOMETIMES SOME
	
	SUBSTANCE ABUSE.
	
	AND EXACTLY HOW IT MIGHT
	ACTIVATE EPILEPTIC REGIONS
	
	OF THE BRAIN IS UNCLEAR.
	
	WHAT WE DO KNOW IS THERE ARE
	SOME CHANGES IN THE BRAIN'S
	
	ELECTRICAL ACTIVITY DURING
	SLEEP DEPRIVATION THAT MAKES
	
	THE BRAIN MORE SUSCEPTIBLE
	TO SEIZURE ACTIVITY.
	
	IT'S ALSO BELIEVED THAT THERE
	ARE SOME HORMONAL CHANGES THAT
	
	COULD POSSIBLY BE RELATED.
	
	- [MAN TALKING INDISTINCTLY]
	
	- ...ALCOHOL, THERE
	ARE TWO ISSUES HERE.
	
	FIRST, A PERSON WITH EPILEPSY
	IS AT AN INCREASED RISK
	
	OF [INDISTINCT]
	
	OR MORE ALCOHOLIC BEVERAGES.
	
	AND ALCOHOL IN THE PRESENCE OF
	SEIZURE MEDICATION LOWERS YOUR
	
	TOLERANCE FOR ALCOHOL AND
	CAN CAUSE RAPID INTOXICATION.
	
	THIS IN TURN CAN LEAD TO
	MISSING YOUR MEDICINE,
	
	INCREASING THE METABOLISM
	AND ELIMINATION
	
	OF YOUR [INDISTINCT]
	
	FALLING AND CAUSING YOURSELF
	INJURY, AND SLEEP DEPRIVATION.
	
	THEN WE HAVE PEOPLE WHO HAVE
	A HISTORY OF ALCOHOL ABUSE.
	
	THEY ARE KNOWN TO HAVE
	INCREASED RISKS
	
	OF DEVELOPING [INDISTINCT].
	
	THE SEIZURES WILL TYPICALLY
	OCCUR WHEN THE ALCOHOL IS
	
	SUDDENLY STOPPED OR REDUCED
	OVER A SHORT PERIOD OF TIME.
	
	THIS CAN HAPPEN DURING
	ILLNESS, A HOSPITAL ADMISSION,
	
	OR WHEN THE PERSON IS UNABLE
	TO ACQUIRE THE ALCOHOL,
	
	AND REPEATED WITHDRAWAL
	FIRST MAKES THE BRAIN MORE
	
	EXCITABLE, AND THEN SEIZURES
	CAN OCCUR REGARDLESS OF HOW
	
	MUCH OR HOW LITTLE
	ALCOHOL IS [INDISTINCT].
	
	ANOTHER SEIZURE
	TRIGGER IS STRESS.
	
	FEELING STRESS, OUR
	BODY RELEASES A HORMONE
	
	CALLED CORTISOL.
	
	THIS CORTISOL RUSHES TO
	THE BRAIN AND HAMMERS
	
	THE HIPPOCAMPUS, WHICH IS THE
	AREA OF THE BRAIN ASSOCIATED
	
	WITH EXCITABILITY.
	
	THE RELEASE OF...
	
	- [MAN TALKING INDISTINCTLY]
	
	- ...INCREASE THE
	LEVEL OF [INDISTINCT]
	
	NEUROTRANSMITTERS.
	
	NEUROTRANSMITTERS ARE
	BRAIN CHEMICALS THAT AFFECT
	
	EVERYTHING--FOOD, SLEEP,
	CONCENTRATION, TELLING OUR
	
	HEART TO BEAT, OUR
	LUNGS TO BREATHE.
	
	WHEN WE TALK ABOUT
	RECREATIONAL DRUGS, ONE
	
	OF THE MOST COMMON ONES I'VE
	SEEN ABUSED ARE COCAINE
	
	AND MARIJUANA.
	
	NOT ONLY ARE THEY ILLEGAL,
	BUT COCAINE, LIKE ALCOHOL,
	
	CAN ACTUALLY INCREASE YOUR
	RISK OF SEIZURES DUE TO
	
	TOXICITY OR WITHDRAWAL.
	
	NOW, AN IMPORTANT
	SEIZURE TRIGGER IS CHANGING
	
	YOUR [INDISTINCT]
	
	MEDICATIONS FROM BRAND
	TO GENERIC
	
	[INDISTINCT] GENERIC FORMS.
	
	GENERIC SEIZURE MEDICATIONS
	CAN BE SAFELY PRESCRIBED
	
	IN CERTAIN SITUATIONS.
	
	THE SWITCHING HAS BEEN
	ASSOCIATED WITH A HIGHER RISK
	
	OF BREAKTHROUGH SEIZURES,
	ADVERSE SIDE EFFECTS,
	
	AND TOXICITY, AND THIS IS
	BECAUSE THE CONCENTRATION
	
	OF THE GENERIC VERSIONS
	CAN RANGE FROM 80% TO 125%.
	
	SO PRESCRIBING IN THIS SETTING
	ACTUALLY CAUSES A CHALLENGE.
	
	- [PEOPLE TALKING AT ONCE]
	
	- BUT MY ADVICE TO MY PATIENTS
	IS TO HAVE THEM CHECK THEIR
	
	MEDICATIONS WHEN THEY PICK
	IT UP AT THE PHARMACY.
	
	IF THE PILLS LOOK DIFFERENT
	THAN USUAL, I TELL THEM TO
	
	NOTIFY THE PHARMACIST,
	HAVE HIM CALLED--WHOEVER
	
	PRESCRIBED THEM, AND IN THAT
	CASE...
	
	I HAVE SOME ADVICE
	
	THAT IS SPECIFIC TO WOMEN,
	AND I'M SURPRISED AT HOW MANY
	
	WOMEN ARE NOT AWARE OF THIS.
	
	BUT THERE ARE SOME WOMEN WITH
	EPILEPSY WHO HAVE A TWOFOLD
	
	INCREASE IN SEIZURE FREQUENCY
	JUST PRIOR TO THEIR CYCLE,
	
	IN THE MIDDLE OF THE CYCLE,
	OR JUST AFTER THE CYCLE.
	
	THIS IS OFTEN REFERRED TO
	AS CATAMENIAL SEIZURES.
	
	IT'S A RESPONSE TO THE HIGHER
	RATIO OF ESTROGEN [INDISTINCT]
	
	HORMONE OR A DECREASED
	RATIO OF PROGESTERONE.
	
	- THANK YOU.
	
	- AND THESE KINDS OF
	SITUATIONS ARE IMPORTANT
	
	FOR YOUR...
	
	- [CHUCKLING]
	
	- THAT MEDICATION CAN BE
	APPROPRIATELY PRESCRIBED
	
	DURING THOSE TIMES.
	
	NOW LET'S LOOK AT
	KEEPING YOU SAFE AT HOME.
	
	PEOPLE WITH EPILEPSY CAN COOK,
	BUT IT'S RECOMMENDED THEY USE
	
	THE BACKBURNERS.
	
	AN ELECTRIC STOVE
	IS SAFER THAN GAS.
	
	BUT THE MOST SAFE
	THING [INDISTINCT]
	
	FOR THOSE [INDISTINCT]
	
	SEIZURES, OF COURSE,
	IS [INDISTINCT].
	
	AND I ALWAYS RECOMMEND THAT
	COOKING BE DONE [INDISTINCT]
	
	IN THE HOUSE IF POSSIBLE.
	
	- [PEOPLE TALKING AT ONCE]
	
	- ...GLASS TABLES BE AVOIDED.
	
	[INDISTINCT]
	CONTROL DEVICE.
	
	PEOPLE WITH EPILEPSY SHOULD
	NOT LOCK THEIR BATHROOM DOOR
	
	OR BEDROOM DOOR, AND IF AT ALL
	POSSIBLE, THE DOOR SHOULD PRY
	
	AND OPEN OUTWARDS SO THAT
	SOMEONE CAN GET IN IF
	
	A PERSON FALLS
	AGAINST THE DOOR.
	
	- HELLO?
	
	- SHOULD AVOID SHARP
	EDGES ON FURNITURE.
	
	AND IF SEIZURES
	INVOLVE FALLING OUT
	
	OF BED, CONSIDER
	[INDISTINCT]
	
	AND THEN WE'VE ALL HEARD,
	I'M SURE, THAT A SHOWER IS
	
	RECOMMENDED
	RATHER THAN A BATH.
	
	[INDISTINCT]
	
	MEDICATIONS, THAT IF
	POSSIBLE, THEY INFORM THEIR
	
	NEIGHBORS ABOUT THEIR
	SEIZURES [INDISTINCT],
	
	DESCRIBING WHAT THEY CAN
	DO IF THE NEED ARISES.
	
	HAVE ALL YOUR NECESSARY
	TELEPHONE NUMBERS
	
	IN A PROMINENT AND EASY-TO-
	FIND SPOT IN YOUR HOME,
	
	AND PLEASE GET YOURSELF A
	MEDIC ALERT BRACELET OR
	
	PENDANT THAT STATES YOU
	HAVE A SEIZURE DISORDER.
	
	UNFORTUNATELY, MANY PUBLIC
	SERVICE PERSONNEL, SUCH AS
	
	POLICE OFFICERS, DON'T ALWAYS
	KNOW ENOUGH ABOUT EPILEPSY,
	
	AND THEY JUST ASSUME THAT
	YOU ARE DRUNK OR ON DRUGS
	
	IN THE MIDDLE OF A SEIZURE.
	
	FOR WOMEN, PLEASE MAKE SURE
	THAT YOUR HEALTH CARE PROVIDER
	
	KNOWS IF YOU SUDDENLY BEGIN
	TAKING HORMONAL BIRTH CONTROL,
	
	THAT HORMONAL BIRTH CONTROL
	CAN ACTUALLY AFFECT YOUR
	
	MEDICATION OR AN INCREASE
	THE MEDICATION CAN
	
	DECREASE THE EFFECTIVENESS
	OF YOUR BIRTH CONTROL.
	
	AND IF YOU HAVE A BABY,
	DON'T BATHE IT IN A TUB IF
	
	YOU'RE ALONE, BUT RATHER GIVE
	IT A SPONGE BATH WITH BABY
	
	IN THE CRIB AND YOUR CONTAINER
	OF WATER OUTSIDE THE CRIB.
	
	THE ROCKING CHAIR DURING
	BREASTFEEDING [INDISTINCT]
	
	...THE BABY.
	
	TRY AND KEEP A PORTABLE CRIB
	ON EACH LEVEL OF YOUR HOME.
	
	SHOULD YOU HAVE AN AURA,
	YOU CAN PUT THE BABY
	
	DOWN AND KEEP IT SAFE.
	
	KEEP YOUR MEDICATIONS ALWAYS
	LOCKED AWAY AND OUT OF REACH
	
	FROM CHILDREN.
	
	AND WHEN YOUR CHILDREN ARE
	OLDER AND CAN UNDERSTAND,
	
	IT'S ALWAYS GOOD TO EXPLAIN TO
	THEM WHY YOU TAKE MEDICATIONS
	
	AND WHAT THEY SHOULD DO
	IF YOU HAVE A SEIZURE.
	
	IT'S AMAZING HOW
	REVEALING CHILDREN CAN BE.
	
	THEY CAN LEARN TO HELP AND CARE
	FOR YOUNGER SIBLINGS DURING
	
	A SEIZURE.
	
	WITH YOUR BABY, PLACE A
	STICKER ON THEIR STROLLER
	
	WITH THEIR NAME AND EMERGENCY
	INFORMATION IN THE EVENT
	
	OF YOU HAVING A SEIZURE.
	
	AND IF YOU HAVE A TODDLER
	AND YOU'RE TAKING THEM OUT
	
	FOR A WALK, TRY AND USE A
	WRIST HARNESS FOR HIS SAFETY
	
	SHOULD YOU HAVE A SEIZURE.
	
	NOW, THE ISSUE OF TRAVELING.
	
	A PERSON WHO HAS EPILEPSY
	SHOULD ALWAYS SEE HIS DOCTOR.
	
	PLAN TO TAKE EXTRA MEDICINES
	WITH YOU AS WELL AS AN EXTRA
	
	PRESCRIPTION IN CASE
	OF AN EMERGENCY.
	
	AND CHECK WITH YOUR INSURANCE
	PROVIDER ABOUT COVERAGE SHOULD
	
	YOU NEED TO SEE A DOCTOR OR
	GO TO THE E.R. WHILE
	
	YOU'RE TRAVELING.
	
	TAKE ALL YOUR PRESCRIPTION
	MEDICATIONS IN THEIR
	
	ORIGINAL CONTAINERS.
	
	I ALWAYS RECOMMEND HAVING A
	LETTER FROM YOUR PHYSICIAN
	
	ON THEIR OFFICIAL LETTERHEAD
	INDICATING THAT YOU DO IN FACT
	
	HAVE A SEIZURE DISORDER
	AND WHAT MEDICINES YOU ARE
	
	PRESCRIBED TO BE CARRYING.
	
	SO IF YOU'RE PLANNING TO
	TRAVEL BY AIR, PLACE YOUR
	
	MEDICINES IN YOUR
	CARRY-ON BAGS, NOT YOUR
	
	CHECKED BAGGAGE.
	
	IT'S ALWAYS GOOD TO CALL THE
	AIRLINE AHEAD OF TIME AND LET
	
	THEM KNOW ABOUT YOUR
	EPILEPSY DISORDER.
	
	MAKE SURE YOU GET ENOUGH SLEEP
	THE NIGHT BEFORE YOU TRAVEL.
	
	EVEN THE EXCITEMENT OF
	TRAVEL CAN AFFECT YOUR
	
	SEIZURE THRESHOLD.
	
	AND YOUR DOCTOR MAY WANT
	TO GIVE YOU SOME ATIVAN OR
	
	LOREZEPAM FOR THE NIGHT BEFORE
	AND THE MORNING OF TRAVEL TO
	
	MINIMIZE THE RISK OF
	SEIZURE BREAKTHROUGH.
	
	SO IF THAT'S SOMETHING YOU
	HAVEN'T CONSIDERED, DEFINITELY
	
	I RECOMMEND TALKING
	WITH YOUR DOCTOR.
	
	AND AGAIN, DO NOT CHANGE THE
	TIME TO TAKE YOUR MEDICINE IF
	
	YOU'RE GOING INTO A DIFFERENT
	TIME ZONE UNLESS IT'S DIRECTED
	
	BY YOUR HEALTH CARE PROVIDER,
	AND THIS IS ANOTHER IMPORTANT
	
	REASON WHY YOU SHOULD TALK
	WITH YOUR HEALTH CARE PROVIDER
	
	BEFORE YOU TRAVEL.
	
	SO LET'S LOOK AT THE TOPIC OF
	FOOD, CAFFEINE, AND TOBACCO.
	
	THERE ARE NO KNOWN FOODS THAT
	CAN ACTUALLY TRIGGER SEIZURES,
	
	BUT A HEALTHY DIET IS ALWAYS
	RECOMMENDED, AND IT'S VERY
	
	IMPORTANT WITH FOODS THAT ARE
	HIGH IN PROTEIN, SUCH AS FISH,
	
	CHEESE, AND EGGS, BECAUSE
	THESE HIGH PROTEINS
	
	CREATE NEUROTRANSMITTERS.
	
	KEEP YOUR BRAIN HYDRATED
	BY DRINKING A LOT OF WATER.
	
	AND EXERCISE YOUR BRAIN
	BY READING, DOING PUZZLES,
	
	AND PROBLEM-SOLVING
	ACTIVITIES.
	
	NOW, CAFFEINE IS
	A DIFFERENT STORY.
	
	CAFFEINE WORKS BY CHANGING
	THE CHEMISTRY OF THE BRAIN.
	
	THERE'S A CHEMICAL IN OUR
	BODY CALLED ADENOSINE THAT IS
	
	ASSOCIATED WITH SLEEP,
	AND WHEN ADENOSINE BINDS TO
	
	RECEPTORS IN THE BRAIN, YOU GET
	DROWSY BECAUSE THE NERVE CELL
	
	ACTIVITY ACTUALLY SLOWS DOWN.
	
	BUT TO A NERVE CELL,
	CAFFEINE LOOKS LIKE ADENOSINE.
	
	SO THE CAFFEINE GOES AHEAD
	AND BINDS TO THE ADENOSINE
	
	RECEPTOR, BUT IT DOESN'T SLOW
	DOWN THE CELL'S ACTIVITY LIKE
	
	THE REAL ADENOSINE WOULD.
	
	INSTEAD OF SLOWING IT DOWN,
	THE CELLS SPEED UP.
	
	YOUR SLEEP BECOMES FRAGMENTED,
	AND LIKE I SAID BEFORE,
	
	THE BRAIN'S ELECTRICAL
	ACTIVITY CHANGES DURING SLEEP
	
	DEPRIVATION AND MAKES THE
	BRAIN MORE SUSCEPTIBLE TO
	
	SEIZURE ACTIVITY.
	
	THEN THERE ARE SOME ENERGY
	DRINKS THAT ARE VERY POPULAR
	
	WITH OUR YOUNG PEOPLE.
	
	THESE HAVE NAMES LIKE MONSTER,
	RED BULL, AND ROCKSTAR.
	
	THESE ENERGY DRINKS ACTUALLY
	CONTAIN AN INORDINATE AMOUNT
	
	OF CAFFEINE AND SOME OTHER
	SUSBTANCES CALLED TAURINE
	
	AND GUARANA SEED EXTRACT.
	
	TAURINE HAS EPILEPTOGENIC
	PROPERTIES.
	
	GUARANA SEED EXTRACT CONTAINS
	A MIXTURE OF CAFFEINE,
	
	THEOPHYLLINE, AND THEOBROMINE,
	ALL WHICH STIMULATE
	
	THE CENTRAL NERVOUS SYSTEM.
	
	AND THEN, BELIEVE IT OT NOT,
	TOBACCO STIMULATES THE RELEASE
	
	OF A NEUROTRANSMITTER WHICH
	IS CALLED ACETYLCHOLINE.
	
	ACETYLCHOLINE EXCITES BRAIN
	CELLS, AND I'VE ACTUALLY SEEN
	
	IT PROVOKE SEIZURE
	BREAKTHROUGH IN A SMALL
	
	PORTION OF PEOPLE WITH A
	PRO-EPILEPTIC BRAIN.
	
	I THINK IT'S IMPORTANT TO
	KNOW A LITTLE BIT ABOUT HERBAL
	
	PRODUCTS BECAUSE MANY PEOPLE
	BUY PRODUCTS AT A HEALTH FOOD
	
	STORE AND ASSUME
	THAT THEY'RE SAFE.
	
	BUT IN FACT, THEY'RE NOT.
	
	LET ME BEGIN WITH ASPARTAME,
	WHICH IS SACCHARINE, AND IT HAS
	
	BEEN SHOWN THAT IN AMOUNTS
	GREATER THAN 34 MILLIGRAMS PER
	
	KILO OF BODY WEIGHT, IT
	CAN PLAY A ROLE
	
	IN SEIZURE BREAKTHROUGH.
	
	ANOTHER SUBSTANCE I'VE SEEN IS
	CLOVE AND HERBAL CIGARETTES,
	
	WHICH OUR YOUNG PEOPLE ARE
	SMOKING THESE DAYS, HAVE ALSO
	
	BEEN SEEN TO PLAY A ROLE
	IN SEIZURE BREAKTHROUGH.
	
	NOW, THERE ARE COLD MEDICINES
	WITH CERTAIN INGREDIENTS THAT
	
	PEOPLE WITH EPILEPSY
	SHOULD NOT TAKE.
	
	I'M GOING TO SPELL SOME OF
	THESE BECAUSE THEY'RE ACTUALLY
	
	SO LONG I CAN BARELY
	PRONOUNCE THEM.
	
	ONE IS A DECONGESTANT
	CALLED PHENYLPROPANOLAMINE.
	
	THAT'S P-H-E-N-Y-L-P-R-O-P-A-N-
	O-L-A-M-I-N-E.
	
	THERE IS A COUGH SUPPRESSANT
	CALLED DEXTROMETHORPAN,
	
	D-E-X-
	T-R-O-M-E-T-H-O-R-P-H-A-N.
	
	DIPHENHYDRAMINE, WHICH IS
	AN ANTIHISTAMINE LIKE
	
	IN BENADRYL.
	
	AND ANOTHER DECONGESTANT
	CALLED PSEUDOEPHEDRINE,
	
	P-S-E-U-D-O-E-P-H-E-D-R-I-N-E.
	
	SOME OF THESE INGREDIENTS HAVE
	ACTUALLY BEEN REMOVED BY THE
	
	FOOD AND DRUG ADMINISTRATION
	AND ARE HELD BEHIND
	
	THE COUNTER AT YOUR PHARMACY,
	BUT SOME OF YOU MAY HAVE SOME
	
	OLDER BOTTLES IN
	YOUR MEDICINE CHEST.
	
	SO I THINK IT'S IMPORTANT FOR
	YOU TO CHECK THESE INGREDIENTS
	
	AND MAKE SURE YOU'RE NOT USING
	THEM IF YOU NEED TO BUY COLD
	
	MEDICINE OVER THE COUNTER.
	
	AND TWO OTHER MEDICATIONS
	THAT WE COMMONLY FIND CAUSING
	
	A ROLE IN SEIZURES ARE
	TRAMADOL, WHICH IS USED
	
	FOR PAIN, AND WELLBUTRIN,
	FOR DEPRESSION OR TO
	
	QUIT SMOKING.
	
	MANY TIMES, IT IS THE INITIAL
	SACCHARINE CAUSING A PERSON'S
	
	FIRST SEIZURE.
	
	SO LET'S LOOK AT EMPLOYMENT.
	
	THE MAJORITY OF EMPLOYMENT
	OPTIONS TO PEOPLE
	
	WITH EPILEPSY ARE OPEN,
	BUT I THINK IT'S IMPORTANT TO
	
	CONSIDER THE SEIZURE TYPE AND
	FREQUENCY OF SEIZURES WHEN
	
	CONSIDERING CERTAIN JOBS.
	
	AND PEOPLE WITH EPILEPSY
	SHOULD NOT CONSIDER
	
	BEING A PILOT,
	AMBULANCE DRIVER, A LONG-HAUL
	
	TRUCK DRIVER, A FIREMAN,
	OR POLICE OFFICER.
	
	THEN THERE ARE CERTAIN JOBS
	LIKE SCAFFOLDING, WINDOW
	
	PAINTING, TREE CUTTING,
	AND ROOFING THAT ARE NOT
	
	RECOMMENDED BECAUSE
	WORKING AT HEIGHT INVOLVES
	
	A DEGREE OF RISK.
	
	SPORTS.
	
	LIVING A FIT AND HEALTHY LIFE
	IS IMPORTANT, AND THERE ARE NO
	
	MAJOR CONTRAINDICATIONS EXCEPT
	FOR ACTIVITIES SUCH AS SCUBA
	
	DIVING, ROCK CLIMBING, BUNGEE
	JUMPING, SKYDIVING, BOXING,
	
	AND SWIMMING.
	
	YOU SHOULD ALWAYS WEAR A
	HELMET WHEN RIDING A BIKE,
	
	MOTORCYCLE, OR HORSE.
	
	YOU SHOULD ALWAYS WEAR A
	SEATBELT WHEN TRAVELING
	
	IN A VEHICLE.
	
	AND WHEN PLAYING SPORTS,
	IT'S IMPORTANT TO WEAR
	
	THE PROPER PROTECTIVE
	SAFETY EQUIPMENT.
	
	AND DON'T GO DIVING INTO A
	POOL THAT HAS SHALLOW WATER OR
	
	A LAKE THAT MAY HAVE SOME
	HIDDEN ROCKS UNDERWATER.
	
	I WANT TO ADD A FEW WORDS
	ABOUT PIERCING, WHICH IS
	
	RATHER POPULAR WITH
	OUR YOUNG PEOPLE.
	
	TONGUE AND EYEBROW PIERCING
	SHOULD BE CONSIDERED
	
	RELATIVELY DANGEROUS IN
	SOMEONE WHO HAS EPILEPSY DUE
	
	TO THE RISK OF ASPIRATION
	OR SERIOUS LACERATION DURING
	
	A SEIZURE.
	
	SO I WANT TO NOW
	TALK ABOUT SUDEP.
	
	THAT'S S-U-D-E-P, WHICH IS AN
	ACRONYM FOR "SUDDEN UNEXPECTED
	
	DEATH IN EPILEPSY."
	
	IT'S RELATIVELY RARE, AND I
	FIND THAT MOST NEUROLOGISTS
	
	DON'T LIKE TALKING ABOUT IT
	BECAUSE THEY DON'T WANT TO
	
	INITIATE A FRIGHTENING
	SCENARIO FOR A PATIENT
	
	WITH EPILEPSY WHEN THE
	RISK OF IT IS SMALL.
	
	BUT I THINK WE EMPOWER
	OURSELVES WHEN WE KNOW AS MUCH
	
	AS WE CAN ABOUT OUR DISORDER.
	
	NOW, MOST PEOPLE WITH EPILEPSY
	LIVE FULL, HEALTHY LIVES,
	
	BUT THEY SHOULD BE AWARE
	THAT HAVING EPILEPSY CAN
	
	OCCASIONALLY BE FATAL.
	
	SO SUDEP, OR SUDDEN UNEXPECTED
	DEATH IN EPILEPSY, LIKE I
	
	SAID, IS OFTEN IGNORED,
	DIFFICULT TO DISCUSS,
	
	AND FRIGHTENING, BUT IT'S
	IMPORTANT TO HAVE ALL
	
	THE FACTS.
	
	SUDEP APPLIES TO SUDDEN DEATH
	IN SOMEONE KNOWN TO HAVE
	
	EPILEPSY IN THE ABSENCE OF AN
	OBVIOUS CAUSE FOR THE DEATH.
	
	IT DOES NOT ALWAYS
	HAPPEN DURING A SEIZURE,
	
	AND A POSTMORTEM EXAMINATION
	DOESN'T ALWAYS REVEAL
	
	THE CAUSE FOR DEATH.
	
	THE NUMBER OF PEOPLE WHO DIE
	FROM SUDEP IS DIFFICULT TO
	
	DETERMINE, BUT IT'S ESTIMATED
	TO OCCUR IN UP TO 93 PEOPLE
	
	AMONG EVERY 10,000
	PEOPLE WITH EPILEPSY.
	
	WHAT WE DO KNOW IS THAT
	IT'S MORE COMMON IN CASES
	
	OF UNCONTROLLED TONIC-CLONIC
	SEIZURES, IN THOSE WHO TAKE
	
	MORE THAN ONE SEIZURE
	MEDICATION, MALES, AND THOSE
	
	WHO HAVE SEIZURES
	IN THEIR SLEEP.
	
	WELL, IN CONCLUSION, I
	THINK THE MORE WE KNOW
	
	ABOUT EPILEPSY, THE MORE WE'RE
	GONNA SHATTER THAT STIGMA THAT
	
	IS ASSOCIATED WITH IT.
	
	AND UNDERSTANDING EPILEPSY
	IS ALSO AN IMPORTANT PART
	
	OF [INDISTINCT].
	
	I WANT TO THANK THE PATIENTS
	AND CAREGIVERS WHO HAVE CALLED
	
	IN TODAY BECAUSE YOU
	ARE EMPOWERING YOURSELF.
	
	DOES ANYONE HAVE ANY
	QUESTIONS FOR ME?
	
	NO QUESTIONS?
	
	- IT SHOULD JUST BE
	OPEN FOR QUESTIONS NOW.
	
	- HELLO?
	
	- YES.
	
	- MY NAME IS KIM LEGWINE.
	
	I'M A NURSE PRACTITIONER
	WORKING WITH NEUROLOGY
	
	AT THE BIRMINGHAM VA.
	
	I HAD A PATIENT THAT TOLD ME
	THAT SHE RECENTLY READ THAT
	
	PATIENTS WITH EPILEPSY
	WERE NOT ALLOWED TO HAVE
	
	SEXUAL INTERCOURSE.
	
	- WELL,
	THAT IS CERTAINLY A MYTH.
	
	IN SOME CASES, I DO
	UNDERSTAND THAT THE ACTUAL ACT
	
	OF INTERCOURSE CAN BE KIND
	OF AN EXCITING, STRESSFUL
	
	SITUATION BECAUSE YOU'RE
	CONCERNED YOU MAY HAVE
	
	A SEIZURE IN THE MIDDLE OF IT,
	
	BUT DEFINITELY NOT.
	
	PATIENTS WITH EPILEPSY SHOULD
	HAVE AND SHOULD DEFINITELY
	
	ENJOY SEXUAL INTERCOURSE.
	
	- YES. I HAVE A QUESTION.
	
	- YES, SIR.
	
	- MY NAME IS JASON SHOWALTER.
	
	I'M 100% DISABLED
	AMERICAN VETERAN.
	
	- YES, SIR.
	
	- I HAD A RIGHT TEMPORAL
	LOBECTOMY
	
	UP IN SAN FRANCISCO...
	
	- MM-HMM.
	
	- ACTUALLY AT THE
	STANFORD MEDICAL CENTER.
	
	DR. KAREN PARKO WAS ONE
	OF MY DOCTORS.
	
	- WONDERFUL.
	
	- AND ONE OF MY QUESTIONS
	IS--MY MEMORY GETS KIND
	
	OF MESSED UP HERE.
	
	I FORGOT NOW WHAT I
	WAS GONNA ASK YOU.
	
	BY THE WAY, THE LAST QUESTION
	THAT SHE ASKED YOU, THAT--
	
	WHOEVER TOLD HER ABOUT
	PATIENTS THAT HAVE EPILEPSY
	
	THAT CAN'T HAVE SEX,
	THAT'S--THAT'S WRONG.
	
	- [LAUGHTER]
	
	- THAT CERTAINLY IS WRONG.
	
	- IT CERTAINLY IS WRONG.
	
	TELL THEM THEY CAN ENJOY IT
	AND HAVE...A GOOD TIME DOING
	
	IT, SO...
	
	- ABSOLUTELY.
	
	- I TAKE TWO MEDICATIONS.
	
	I TAKE DEPAKOTE, AND
	I TAKE ZONISAMIDE.
	
	- RIGHT.
	
	- THEY JUST STARTED THAT.
	
	- AND MY BODY'S HAVING
	A HARD TIME.
	
	I'M TRYING TO GET USED TO IT.
	
	THEY'RE STARTING TO TAPER
	ME OFF THE DEPAKOTE.
	
	- AND LEAVE YOU ON
	ZONISAMIDE MONOTHERAPY?
	
	- YES.
	
	- OK.
	
	WELL, THE PROPERTIES OF
	DEPAKOTE, ACTUALLY, ARE THAT
	
	IT HAS SOME MOOD
	STABILIZING PROPERTIES.
	
	SO SOMETIMES, AS WE'RE
	COMING OFF ONE OF THOSE KINDS
	
	OF MEDICATIONS, WE FEEL
	NOT AS GOOD AS WE USED TO
	
	BECAUSE WE'RE GETTING RID
	OF THOSE MOOD STABILIZING
	
	PROPERTIES THAT THE
	MEDICATION WAS EXERTING.
	
	- OK.
	
	- SO THAT COULD BE THE THING.
	
	- THAT'S WHAT I THOUGHT.
	
	- YOUR BODY WILL
	GET USED TO IT.
	
	- I WAS A NURSE IN THE
	MILITARY, TOO, AS
	
	A MATTER OF FACT.
	
	I WAS A MEDIC IN THE SERVICE,
	AND IT WAS HARD.
	
	I MEAN,
	I WAS--A MEDIC IN THE AIR
	
	FORCE--IN THE CIVILIAN WORLD,
	I WAS THE SAME AS AN LVN.
	
	ALL I HAD TO DO WAS TAKE THE
	TEST, AND IT WAS REALLY NICE.
	
	I LIKED IT.
	
	I MEAN--
	
	- GOOD.
	
	- AND WHEN I WAS IN THE AIR
	FORCE, THEY TOLD US,
	
	"DON'T GET ATTACHED TO YOUR
	PATIENTS," BUT THAT'S HARD.
	
	IT'S LIKE SAYING, "DON'T LOVE
	YOUR BROTHERS OR SISTERS."
	
	- RIGHT.
	
	I'M VERY ATTACHED
	TO MY PATIENTS.
	
	- YEAH.
	
	AND I MEAN, IN THE CIVILIAN
	WORLD, IT WAS A LITTLE
	
	BIT EASIER.
	
	I DIDN'T TAKE THAT WORK
	HOME WITH ME AS MUCH,
	
	BUT IN THE MILITARY, YOU'RE
	WITH THOSE GUYS 24/7.
	
	- ABSOLUTELY. I UNDERSTAND.
	
	- YOU HAVE SO MUCH--I MEAN,
	THEY'RE FIGHTING--AND IT
	
	WASN'T SO MUCH THAT AS MY
	FAMILY THAT WAS BACK HOME,
	
	THOSE GUYS THAT
	I'M TAKING CARE OF,
	
	THEY'RE PROTECTING MY
	FAMILY THAT'S BACK HOME.
	
	SO THAT'S WHY I LOVE
	THOSE GUYS SO MUCH AND--
	
	- VERY GOOD.
	
	- AND IT WAS SO HARD.
	
	AND I HAD MY FIRST SEIZURE
	IN 1996, AND USUALLY CHILDREN
	
	START HAVING SEIZURES.
	
	I WAS,
	LIKE, 23 YEARS OLD, I THINK,
	
	WAS WHEN I HAD MY
	FIRST SEIZURE.
	
	- MM-HMM.
	
	- SO WHEN I TALKED TO THE
	DOCTORS IN SAN FRANCISCO,
	
	AND I ASKED THEM, I SAID,
	"CAN THIS HELP A CHILD?"
	
	AND THEY SAID, "THAT'S WHY
	WE WANT TO DO THIS SURGERY,
	
	JASON, BECAUSE WE THINK THIS
	CAN HELP--" EXACTLY.
	
	"WE THINK TAKING OUT THIS PIECE
	OF SCAR TISSUE ON YOUR RIGHT
	
	TEMPLE CAN HELP A CHILD."
	
	AND WHEN THEY DID THE EEG,
	THEY SAID, "WE THINK IF
	
	"WE FIND A CHILD THAT HAS YOUR
	SAME TYPE OF BRAINWAVES
	
	AND BRAIN PATTERNS..."
	
	- MM-HMM.
	
	- IT CAN HELP A CHILD.
	
	I SAID,
	"THEN DO IT," BECAUSE IT'S NOT
	
	GONNA COST ME ANYTHING.
	
	I KNOW THAT.
	
	THE GOVERNMENT'S
	GONNA PAY FOR IT.
	
	AND THEY DID.
	
	SO I WENT AHEAD
	AND HAD IT DONE.
	
	72 STAPLES THEY
	PUT IN MY HEAD.
	
	IT WAS WORTH IT. I'D DO
	IT ALL OVER AGAIN.
	
	AND IT HELPED A LITTLE BIT.
	
	I STILL HAVE THEM
	OCCASIONALLY, BUT NOT AS BAD.
	
	AND THEY CAN'T FIGURE OUT
	WHY THEY'RE NOCTURNAL.
	
	THEY HAPPEN WHEN
	I'M IN MY SLEEP.
	
	- MM-HMM.
	
	- I DON'T KNOW WHY.
	
	I WAS GONNA ASK YOU, DO YOU
	KNOW WHY IT HAPPENS--WHY
	
	PEOPLE HAVE THEM
	IN THEIR SLEEP?
	
	- WHY PEOPLE HAVE
	THEM IN THEIR SLEEP?
	
	WELL, WHEN YOU FALL ASLEEP,
	YOUR BRAINWAVES, ELECTRICAL
	
	ACTIVITY OF YOUR BRAIN
	IS MORE SUSCEPTIBLE.
	
	THIS IS, OF COURSE,
	[INDISTINCT]
	
	A PRO-EPILEPTIC BRAIN.
	
	SO YOUR SEIZURES CAN ALSO
	CHANGE AS YOU GET OLDER.
	
	SO IT'S VERY HARD FOR ME
	TO GIVE YOU ANSWERS.
	
	- OK.
	
	- IS IT POSSIBLE FOR US TO GET
	A COPY OF THE--WHAT WE SPOKE
	
	ABOUT TODAY?
	
	- I WOULD BE MORE THAN HAPPY
	TO PROVIDE THIS TO RYAN
	
	AND SEAN IF THEY WOULD LIKE
	TO DISTRIBUTE IT TO ESPECIALLY
	
	THE MEDICAL PEOPLE
	WHO MAY BE ON BOARD.
	
	- YES.
	
	- I'D GIVE YOUR NAME TO
	SEAN OR RYAN AND SEND THEM
	
	AN E-MAIL, AND I'LL BE
	HAPPY TO SUBMIT IT.
	
	- WHAT IS YOUR E-MAIL?
	
	OH, SORRY.
	
	- OH,
	ACTUALLY, YOU CAN E-MAIL ME.
	
	DENISE--D-E-N-I-S-E--DOT-
	RILEY, R-I-L-E-Y--AND THEN
	
	PUT THE NUMBER
	2@VA.GOV, G-O-V.
	
	OK?
	
	- ALL RIGHT.
	
	THANK YOU.
	
	- YOU'RE WELCOME.
	
	DOES ANYONE ELSE HAVE
	ANY QUESTIONS FOR ME?
	
	- YEAH. YEAH, I DID.
	
	MY HUSBAND HAS HAD EPILEPSY
	NOW FOR 16 YEARS, BUT THERE
	
	ARE SOME NEWER NUANCES OF HIS
	SEIZURES THAT I HAVEN'T SEEN
	
	BEFORE THAT HAVE KIND OF
	COME ABOUT IN THE PAST, OH,
	
	YEAR OR SO.
	
	- RIGHT.
	
	- AND I WONDERED, DOES THAT
	INDICATE ANYTHING, OR IS THAT
	
	KIND OF COMMON WITH
	HOW IT EVOLVES?
	
	- WELL,
	I THINK IT'S VERY IMPORTANT,
	
	MA'AM, FOR YOU TO DESCRIBE
	THESE NUANCED FEATURES TO YOUR
	
	HUSBAND'S SEIZURES
	TO THE PHYSICIANS
	
	SO THAT THE PHYSICIANS
	
	CAN TRY AND CAPTURE THEM
	DURING AN EEG AND ACTUALLY
	
	DETERMINE IF THEY ARE IN FACT
	SEIZURE ACTIVITY OR PERHAPS
	
	SOMETHING ELSE.
	
	- MM-HMM.
	
	OK.
	
	- I THINK THAT WOULD
	BE VERY IMPORTANT.
	
	IT'S RARE THAT ALL OF A SUDDEN
	SEIZURES MANIFEST NEW FEATURES
	
	OUT OF THE BLUE.
	
	- YEAH, OK.
	
	- SO I THINK IT WOULD BE
	VERY IMPORTANT TO CAPTURE
	
	THOSE ON EEG.
	
	- OK.
	
	- ALL RIGHT?
	
	I HOPE I ANSWERED THAT.
	
	- THANK YOU.
	
	- ANYONE ELSE?
	
	- I HAVE ONE LAST
	QUESTION, DENISE.
	
	I NOTICE WITH THIS MEDICATION,
	TOO, MY CHEST IS TURNING RED,
	
	AND I'M STARTING TO REALLY
	SWEAT A LOT, AND I GET REALLY
	
	HOT, AND MY
	THROAT'S SWELLING UP.
	
	- WITH THE ZONISAMIDE?
	
	- YEAH.
	
	I HAVE A HARD TIME BREATHING.
	
	- WELL,
	I THINK YOU DEFINITELY NEED TO
	
	TELL YOUR DOCTOR ASAP.
	
	YOU MAY BE HAVING AN
	ALLERGIC REACTION.
	
	- THAT'S WHAT I
	WAS THINKING, TOO.
	
	- AND I'M NOT SURE HOW CLOSE
	YOU ARE, BUT THEN OTHERWISE
	
	I'D GO TO MY URGENT CARE
	CENTER AND LET THEM KNOW YOU
	
	STARTED A NEW MEDICATION
	AND YOU'RE HAVING
	
	ADVERSE FINDINGS.
	
	- I CALLED AND LEFT
	A MESSAGE WITH HER.
	
	SHE WASN'T IN.
	
	SO...I TALKED--ANOTHER DOCTOR
	CALLED ME BACK FROM
	
	THE NEUROLOGY IN FRESNO, AND I
	LEFT A MESSAGE WITH HER, SO...
	
	- I THINK IT'S PRUDENT
	IF YOU CAN GET YOURSELF TO
	
	THE URGENT CARE CENTER AT
	YOUR VA THAT YOU DO THAT.
	
	- OK.
	
	- ALL RIGHT?
	VERY IMPORTANT.
	
	RIGHT.
	
	ANYONE ELSE?
	
	WELL, SEAN AND RYAN,
	I THANK YOU BOTH.
	
	- THANK YOU.
	
	- AND THANK YOU, EVERYONE,
	FOR CALLING IN.
	
	- THANK YOU FOR
	DOING THIS FOR US.
	
	- IT WAS MY PLEASURE, AND
	I HOPE I GAVE SOME USEFUL,
	
	CLEAR INFORMATION TO EVERYONE.
	
	- CAN I GET YOUR
	WEBSITE AGAIN?
	
	- IT'S NOT MY WEBSITE.
	
	IT WAS MY E-MAIL ADDRESS THAT I
	GAVE THE NURSE PRACTITIONER
	
	SO THAT I COULD SEND HER A
	COPY OF WHAT I SPOKE ABOUT.
	
	- COULD YOU DO THAT FOR ME?
	
	- I DON'T SEE WHY NOT.
	
	YOU'RE THE GENTLEMAN WITH
	THE SWOLLEN THROAT?
	
	- YES, MA'AM.
	
	- WELL,
	I'LL TELL YOU WHAT.
	
	I WOULD BE VERY HAPPY IF YOU
	GOT YOURSELF SOME MEDICAL
	
	ATTENTION RIGHT AWAY, AND THEN
	I WILL SEND IT TO DR. PARKO.
	
	SHE'LL KNOW WHO YOU ARE,
	AND SHE'LL PASS IT TO YOU.
	
	- OK.
	
	- OK?
	
	- OK.
	
	- THANK YOU.
	- THANK YOU.
	
	- HELLO?
	
	- HI.
	
	I CALLED IN LATE TO THE SHOW,
	AND I'D LIKE TO KNOW IF YOU'RE
	
	GOING TO HAVE ANOTHER ONE.
	
	- SPECIFICALLY ON THIS TOPIC?
	
	- YEAH.
	
	- I DON'T THINK IT'S PLANNED.
	
	I THINK WE HAVE A
	DIFFERENT TALK EVERY MONTH.
	
	I WILL BE HAPPY TO RELAY THIS
	INFORMATION TO YOUR HEALTH
	
	CARE PROVIDER IF YOU CAN GIVE
	ME HIS NAME, AND THEN THEY CAN
	
	SHARE IT WITH YOU.
	
	- OK. IT'S CONSIDERING MY SON.
	
	HE'S HAD SEIZURES EVER SINCE
	HE'S COME BACK FROM IRAQ.
	
	- YES, SIR.
	
	- AND HE'S BEING
	TREATED WITH DILANTIN.
	
	- UH-HUH.
	
	- 800 MILLIGRAMS.
	
	AND LEVITRICETAM.
	
	- LEVITRICETAM, UH-HUH.
	
	- YEAH, 2,000.
	
	- OK.
	
	- AND HE HAS JUST EXPERIENCED
	ANOTHER SEIZURE YESTERDAY
	
	MORNING AT 9:00 A.M.
	
	- RIGHT.
	
	- AND HE'S GOING THROUGH A
	VA HOSPITAL, AND HE'S GOT
	
	A NURSE PRACTITIONER, JUDY
	OZUNA, AND WE'RE MONITORING
	
	ALL THESE SEIZURES.
	
	HE USED TO HAVE THEM, LIKE,
	EVERY 6 MONTHS, AND THEY SEEM
	
	TO BE GETTING A LOT MORE
	FREQUENT EVEN THOUGH HE'S
	
	ON DIFFERENT DOSES.
	
	HE WAS JUST ON THE DILANTIN.
	
	THEN SHE ADDED THE OTHER
	MEDICINE JUST A LITTLE
	
	WHILE AGO.
	
	- RIGHT. RIGHT.
	
	AND I'M SURE MS. OZUNA IS
	PROBABLY GOING TO BE THINKING
	
	OF TAPERING HIM OFF THE
	DILANTIN AS SHE STABILIZES HIM
	
	ON SOME OF THESE
	NEWER MEDICATIONS.
	
	I'M NOT A PROPONENT OF
	DILANTIN EVEN THOUGH IT IS ONE
	
	OF THE MOST WIDELY PRESCRIBED
	SEIZURE MEDICATIONS.
	
	- OK.
	
	- WE DO KNOW THAT LONG-TERM
	USE OF DILANTIN CAN CAUSE SOME
	
	UGLY THINGS LIKE OSTEOPOROSIS;
	NEUROPATHY, WHICH IS DEADENING
	
	OF THE NERVES IN THE
	BOTTOM OF THE FEET--
	
	- AND YOUR TEETH FALL OUT.
	
	- YOUR GUMS CAN SWELL UP
	AND START BLEEDING.
	
	YOU LOSE YOUR TEETH.
	
	AND ALSO, THE WAY THE
	BODY BREAKS DOWN DILANTIN,
	
	IT CAUSES REAL PEAKS AND LOWS
	FOR A PATIENT, AND THEY HAVE
	
	TROUBLE STAYING ON
	A THERAPEUTIC DOSE.
	
	THEY GET TOXIC EASILY,
	OR THE LEVELS GO DOWN.
	
	SO I'M SURE MS. OZUNA
	HAS INITIATED YOUR SON
	
	ON LEVITRICETAM WITH THE PLAN
	OF EVENTUALLY GETTING HIM OFF
	
	THE DILANTIN.
	
	- WELL,
	RIGHT NOW, WE JUST HAD
	
	A MEETING WITH HER A COUPLE
	DAYS AGO, AND SHE WANTED TO
	
	KIND OF BREAK DOWN--KIND OF
	REDUCE THE AMOUNT OF, WHAT WAS
	
	THE NAME OF THAT, LEVETRA--
	
	- LEVITRICETAM?
	
	- YEAH, LEVITRICETAM.
	
	SHE WAS TRYING TO CUT HIM
	DOWN ON THAT, TAKE HIM OFF TO
	
	500 MILLIGRAMS OF THAT ONE.
	
	- OK. SHE MUST HAVE A REASON.
	
	MAYBE IT'S NOT WORKING THE
	WAY SHE EXPECTED IT TO.
	
	- YEAH,
	HE WAS HAVING--HE SEEMED TO BE
	
	MORE WEAK AND LETHARGIC
	WITH THAT ONE.
	
	- I SEE.
	
	- AND HE SEEMED TO HAVE AN
	ONSET OF DIFFERENT--THEY'RE
	
	LIKE LULLS?
	
	- LULLS?
	
	- [INDISTINCT] LULLS.
	
	YEAH, HE'LL ALL OF A
	SUDDEN JUST BLANK OUT.
	
	AND WE TOLD HER ABOUT THESE
	WHEN WE HAD OUR MEETING,
	
	AND SHE SAYS, YEAH, THIS WAS
	SOMETHING--A SEIZURE THAT HE'S
	
	EXPERIENCED, AND
	WE HAD NO IDEA.
	
	WE HAD FIGURED IT'S
	EASIER WITH A SEIZURE.
	
	AND HE GOT THESE BLANK-OUT
	STARES WHERE HE'S LAYING
	
	IN BED AND THEN NOT REMEMBER
	THAT HE'S DOING IT...
	
	- EXACTLY.
	
	- WELL,
	I THINK THE IMPORTANT THING,
	
	SIR, IS FOR YOU TO WRITE DOWN
	THE DIFFERENT TYPES OF EVENTS
	
	YOU'RE SEEING...
	
	- YES.
	
	- AND THAT YOU GET ADMITTED
	INTO A MONITORING PROGRAM
	
	WHERE THEY CAN ACTUALLY
	CAPTURE EACH OF THESE
	
	DIFFERENT THINGS YOU'RE
	DESCRIBING AND CONFIRM THAT
	
	THEY ARE EPILEPTIC SEIZURES,
	AND THEN, BEING IN AN EPILEPSY
	
	MONITORING UNIT CAN ALSO
	MAXIMIZE THE THERAPY THAT THE
	
	NURSE PRACTITIONER AND HER
	NEUROLOGIST CAN PRESCRIBE
	
	FOR YOUR SON.
	
	- SO WE SHOULD TALK TO JUDY
	AND SEE IF SHE CAN GET HIM
	
	INTO A MONITORING SITUATION?
	
	BECAUSE RIGHT NOW WE'RE JUST
	WATCHING HIM HERE AT HOME
	
	AND WRITING DOWN WHENEVER
	THESE THINGS HAPPEN.
	
	- RIGHT.
	
	- BECAUSE THESE LULLS
	WERE NEW TO US.
	
	WE HAD NO IDEA THAT THERE WAS
	A CONNECTION BETWEEN THOSE
	
	TYPE OF SEIZURES--NOT A
	CONNECTION, BUT THE DIFFERENT
	
	TYPES OF SEIZURES THAT
	HE MIGHT BE EXPERIENCING.
	
	- RIGHT.
	
	I THINK IT'S IMPORTANT IF THE
	PATIENT IS NOT RESPONDING TO
	
	MEDICATION THAT MONITORING
	OF THE EVENTS IN ORDER TO
	
	IDENTIFY THE SEIZURES,
	CLASSIFY THEM, MAXIMIZE
	
	THERAPY, AND GIVE THE BEST
	OPINIONS AND MEDICAL TREATMENT
	
	WOULD BE TO
	EVALUATE WITH EEG 24/7.
	
	- EEG IS RIGHT OUT THERE.
	
	SO I SHOULD TALK TO JUDY
	ABOUT MAYBE EEG MONITORING?
	
	- YES, ABSOLUTELY.
	
	- OK.
	
	- I HOPE THAT ANSWERED AND
	HELPED YOU A LITTLE BIT.
	
	- YEAH.
	
	I'M SORRY I COULDN'T GET IN AT
	THE BEGINNING OF THE PROGRAM
	
	TO SEE IF OTHER PEOPLE HAD ANY
	KIDS THAT CAME BACK FROM IRAQ
	
	THAT ARE EXPERIENCING
	THE SAME THING.
	
	- YES.
	
	WELL, WE'RE DEFINITELY SEEING
	MORE OF OUR YOUNG PEOPLE
	
	COMING BACK FROM
	IRAQ WITH SEIZURES.
	
	BUT IT'S IMPORTANT TO FOCUS ON
	MONITORING BECAUSE FORTUNATELY
	
	NOT EVERY NERVE TWITCH IS A
	SEIZURE, AND WHEN SOME OF OUR
	
	VETERANS ARE COMING BACK,
	THEY'RE ON MEDICATION,
	
	AND SO WE HAVE TO REALLY
	DECIPHER WHO'S HAVING TRUE
	
	EPILEPTIC SEIZURES
	AND WHO'S NOT.
	
	- SURE, RIGHT.
	I AGREE, YEAH.
	
	OK, VERY GOOD.
	
	- I WILL SEND MY
	SUGGESTIONS TO JUDY OZUNA, OK?
	
	- YES, I WILL.
	THANKS SO MUCH.
	
	- OK.
	
	- I'LL BE PRAYING
	FOR MY BROTHER.
	
	- THANK YOU VERY MUCH. YEAH.
	
	- [PEOPLE TALKING AT ONCE]
	
	- WHO'S THE GENTLEMAN
	THAT'S ON THE LINE THAT JUST
	
	SPOKE UP THERE?
	
	- I AM A FELLOW VETERAN.
	I'M 100% DISABLED AS WELL.
	
	I DEVELOPED EPILEPSY
	IN THE SERVICE.
	
	- WHAT SERVICE WERE YOU IN?
	
	- I WAS IN THE AIR FORCE.
	I WAS AN AIR FORCE--
	
	- AND YOU WERE OVER THERE
	AT THE SAME TIME, OVER
	
	IN IRAQ, OR--
	
	- NO,
	ACTUALLY, I NEVER DID GO.
	
	I WAS IN BOSNIA. I WASN'T IN--
	I WAS IN FROM 1993 TO 1997.
	
	- AND YOU CAME BACK AND
	YOU WERE EXPERIENCING--
	
	- YEAH,
	WHEN I WAS IN BOSNIA, BUT I
	
	NEVER DID END UP
	GOING TO IRAQ.
	
	I BROUGHT--I SAW
	THE LITTLE WAR.
	
	I DIDN'T SEE THE BIG ONE. BUT...
	
	- WELL, THANK YOU.
	
	- YOU'RE WELCOME, SIR.
	
	WAS A LADY--
	
	- YES. MY NAME IS ALCEA.
	
	I JOINED THE CALL LATE,
	AND I WAS JUST WONDERING--
	
	I'M A NURSE AT THE VA
	IN WEST PALM BEACH.
	
	I WAS WONDERING IF THERE
	IS ANY INFORMATION--I WAS
	
	IN A MEETING, AND I
	JUST RAN BACK AND--
	
	- NO PROBLEM.
	
	- YES. IF IT'S POSSIBLE FOR YOU
	TO E-MAIL IT TO ME IF THERE ARE
	
	POWERPOINTS, OR I'M
	NOT SURE WHAT YOU USE--
	
	- I DIDN'T HAVE A POWERPOINT,
	
	BUT I'M GONNA GIVE YOU MY
	E-MAIL ADDRESS.
	
	- OK.
	
	- YOU SEND ME A LITTLE E-MAIL,
	AND I'LL SEND IT TO YOU.
	
	IT'S DENISE--DENISE,
	D-E-N-I-S-E--DOT-RILEY, I-L-E-Y.
	
	PUT THE NUMBER 2,
	SO DENISE.RILEY2@VA.GOV.
	
	OK?
	
	ALL RIGHT?
	
	- ALL RIGHTY.
	THANK YOU SO MUCH.
	
	I'LL E-MAIL YOU RIGHT NOW.
	
	- MY PLEASURE. ANYONE ELSE?
	
	ALL RIGHT.
	
	- THANK YOU, DENISE.
	
	I APPRECIATE THAT.
	
	- MY PLEASURE.
	
	THANKS TO EVERYONE
	FOR CALLING IN.
	
	- VERY INTERESTING
	PRESENTATION. THANK YOU.