1. Seizure-Related Emergencies
Thank you for taking the time to join us today talk about this difficult but very important topic-sudden unexpected death in epilepsy, also known as SUDEP. We would like to thank the Epilepsy Foundation and the Centers for Disease Control and Prevention for making this webinar possible. After the live broadcast of this webinar, the content will be made available on the EFNJ website: You will be able to view the webinar at any time in the future. We would like to encourage you to pass along the information you will learn today and reach out to your doctor if you have any additional questions.
We would also like to thank our presenter of this webinar, Dr. Fertig, for taking the time out of his/her busy schedule to help us understand more about SUDEP. XXXXXXX is (enter biography here).
Status Epilepticus and SUDEP
Evan Fertig MD,
Northeast Regional Epilepsy Group

2. I think I will call myself “BRAIN”

3. Outline Status Epilepticus SUDEP Seizure Safety Causes Prevention
Devices
Seizure Safety
This webinar will highlight the topic of sudden unexpected death in epilepsy, also known as SUDEP. From here on, I will just use the word SUDEP which again stands for sudden unexpected death in epilepsy. As you will learn, SUDEP in a major area of reseach. There are a many things we know about SUDEP and many things that we still do not know. This is why research is so important so we can start to understand what causes SUDEP in some people and not others- and determine ways to prevent it. I will talk about what the latest data seems to suggest as the possible causes. We will discuss the risk of SUDEP and ways to minimize the risk. At the end, I will give a list of e websites and other local resources where it is possible to learn more about SUDEP and get help if you need it.

4. 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

5. “TIME IS BRAIN” Status Epilepticus A medical and neurologic emergency
55,000 deaths in U.S. per year
Early recognition and treatment are essential
Status Epilepticus is a common medical and neurologic emergency,
which is responsible for at least 55,000 deaths in the US alone.
Given the sig. risk of mortality, and the possibility of successful therapeutic intervention, it is critical that all physicians learn to rapidly identify and treat patients in SE.
The same maxim holds true for Status as for acute Stroke, TIME IS BRAIN
A general principle is that longer a seizure lasts, the less likely it will stop and cause brain damage.
Moreover, earlier treatment for SE is more likely to be successful

6. 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
Official Definition
Seizure activity lasting at least 30 minutes
Operational Definition (real world)!
Any seizure longer than 5 minutes
Why?
FIRST POINT
The official but now anquited defintion of SE was seizure activity lasting for at least 30 minutes.
This defintion was derived from animal studies from the 1970’s and 80’s
After this time point: significant damage to brain
After 2nd point:
More recently there has been a move to a more practical operational defintion which is that : read quotes
This is supported by clinical studies which show that:
in humans most seizures will terminate spontaneously within a few minutes
Seizures lasting longer than five minutes unlikely to stop spontaneously and without treatment
Lowenstein: Epilepsia 1999;40:120-2

7. Seizure Types
Generalized
Focal
Focus

8. Classification of Seizures
Partial - Onset
Simple partial
Complex partial
Secondarily generalized
Generalized - Onset
Absence
Myoclonic
Generalized tonic-clonic
Tonic
Clonic
Atonic

9. Not all Status Epilepticus is Created Equal
Absence and Other
Usually
No convulsions, other features
Not as dangerous (except Myoclonic)
Generalized Convulsive
Unresponsive
Obvious convulsions
Dangerous
Nonconvulsive
Subtle or absent convulsions
More Dangerous

10. Why is Status Epilepticus Dangerous?
Heart
Low Blood Pressure
Arrhythmias
Lungs
Breathing Problems
Aspiration
Lung clots
Brain
Brain cell death?

11. 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

12. Questions, questions, questions
Why did Edward go into Status Epilepticus?
How could it have been prevented?

13. 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
*Epilepsy can cause without non-adherence. Non adherence does not equal patient fault

14. 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”

15. 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
So as you already know, SUDEP stands for sudden unexpected death in epilepsy. The formal definition of SUDEP that we will use in our talk today is the one used by researchers Nashef and Brown which states that SUDEP is the “sudden, unexpected, witnessed or unwitnessed, nontraumatic and nondrowning death in a patient with epilepsy, with or without evidence of a seizure and excluding documented status epilepticus.”
Lets break down that long definition to make it easier to understand. SUDEP is listed as the cause of death in a person with epilepsy when the person has been examined after death and no other cause of death can be found. SUDEP victims die suddenly, without drowning, without any trauma or physical accident, without having used any illicit drugs, or without having a heart attack. The medical examiner cannot find a cause of death in that person. However, if that person has status epilepticus, or really long seizures that last longer than 30 minutes or seizures that keep on occurring one after the other, SUDEP is not given as the cause of death.
Sources:
Hirsch LJ, Donner EJ, So EL, et al. Abbreviated report for the NIH/NINDS workshop on sudden unexpected death in epilepsy. Neurology 2011; 76(22):
Nashef L, Brown S. Epilepsy and sudden death. Lancet 1996; 348:
So EL, Bainbridge J, Buchhalter JR, et al. Report of the American Epilepsy Society and the Epilepsy Foundation Joint Task Force on Sudden Unexplained Death in Epilepsy. Epilepsia 2009; 50(4):

16. 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
Even though more research is being now than ever before, the exact cause of SUDEP is still a medical mystery. Researchers do have some suspects though in this mystery. At present, the leading theory is that something goes wrong in the heart before SUDEP. From medical records, researchers have looked back at the EKGS (which are electrical recordings of the heart) of patients who have died of SUDEP. These researchers follow subtle irregularities in the heartbeats of these victims. This suggests that an irregular heartbeat called an arrhythmia might have been a contributing cause of death. Some researchers think that this may be because of an abnormality of what are called “ion channels” located in the heart. Ion channels are proteins which are located in the walls of heart cells. Heart cells use ion channels to talk to each other using electricity to produce normal beating of the heart. When these ion channels are not working right, an arrhythmia can occu
R, which is a dangerous, irregular heartbeat. Some arrhythmias can cause the heart to stop pumping blood which can lead to death. Some very rare inherited abnormalities of the heart’s ion channels, could put some patients at epilepsy at higher risk of SUDEP. This is still being studied.
Another suspect is dysfuction of the brain’s breathing center. In the lowest part of the brain, in a part called the brainstem, the breathing center directs the muscles surronding the lungs to take breathes in and out, a process we call respiration. This breathing center communicates with other parts of the brain and the lung muscles using electrical signals. Some research suggests that the abnormal electrical activity that occurs during a severe seizure may cause the normal electrical signaling of the breathing center to stop working, which disrupts normal respiration. Lack of respiration causes oxygen levels to fall in the body. Death can be the result, because the heart needs oxygen to pump.
Another theory is that patients who die of SUDEP may have brains which do not have adequate amounts of certain important chemicals. For example, serotonin is a very important chemical which has many roles in the brain- but one of its most important roles is in the breathing center. When the breathing center detects the brain is not getting enough oxygen, serontonin kickstarts the breath cenr to increase respiration- in other words take deep breaths in and out. For unknown reasons, SUDEP victims brains have lower levels of serontonin. During or after a long seizure, oxygen levels can fall to dangerous levels. Normally, this is not a problem, because the breathing center will detect this drop, and then serontonin will increase respiration, and the person is ok. Unfortunately, patients with SUDEP may not have enough serontonin to kickstart breathing, and so they will stop breathing and die.
As I explained, all of these possible reasons are just theories. In may be possbile, that SUDEP is caused by a combination of these factors, not just one.
Sources:
Hirsch LJ. Is sudden unexpected death in epilepsy due to postictal brain shutdown? Annals of Neurology 2010; 68(6):
Tomson T, Walczak T, Sillanpää M, et al. Sudden unexpected death in epilepsy: a review of incidence and risk factors. Epilepsia 2005; 46(S11):
Hirsh LJ, Donner EJ, So EL, et al. Abbreviated report for the NIH/NINDS workshop on sudden unexpected death in epilepsy. Neurology 2011; 76(22):
Hirsch LJ. Breathing new life into the fight against sudden death in epilepsy. Epilepsy Currents 2009; 9(5):
Pinto KGFD, Scorza FA, Arida RM, et al. Sudden unexpected death in an adolescent with epilepsy: all roads lead to the heart? Cardiology Journal 2011; 18(2):

17. 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
Now that we know the definition and some possible causes, it is important to khow often SUDEP occurs. 1 out of 100 people in the United States, or 1% of the population, have epilepsy. Of this 1%, the annual risk of SUDEP can be as low as 1 in 1,000 or as high as 1 in At this point we have to talk about what are called “risk factors”. Risk factors are things that are likely to increase a person’s chances of a certain event. For example, smoking is a known risk factor in the development of lung cancer. A person that smokes is increasing his or her chances of getting lung cancer in the future. Much in the same way, there are known risk factors for SUDEP.
Uncontrolled seizures is the largest risk factor for SUPEP. If a person with epilepsy has good control over his or her seizures, the risk of SUDEP is lower (1 in 1,000) than someone with uncontrolled seizures(1 in 150). There are a number of possible reasons why a person might have uncontrolled seizures. We will talk about this later in the lecture.
Having a certain type of seizure called generalized tonic clonic or grand mal seizures can be a risk for SUDEP, again especially when they are poorly controoled. Other types of seizures, like absence seizures or complex partial seizures, are not as associated with risk of SUDEP. The reason may be that GTC cause more electrical dysfunction throughout brain, especially into the breathing center as we previously discussed. GTC may also put more strain on the heart, and if someone has a preexisting ion channel problem, as we previously discussed, this could lead to SUDEP.
A history of GTC at night time is also a risk factor for SUDEP. During the night, seizures tend to go unobserved, and so if the person develops breathing trouble, they may not be able to be rescued.
We also know that patients that have autism are at higher risk of also having epilepsy. In addition, treatment resistant epilepsy is common among those suffering from idiopathic autism, or autism where the cause is not known. As many as 1/3 of people with autism have treatment resistant epilepsy which, as I mentioned, increases the risk of SUDEP.
Sources:
Pickett J, Xiu E, Tuchman R, et al. Mortality in individuals with autism, with and without epilepsy. Journal of Child Neurology (in press)
Ridsdale L, Charlton J, Ashworth M, et al. Epilepsy mortality and risk factors for death in epilepsy: a population-based study. British Journal of General Practice 2011; 61(586):
Sansa G, Carlson C, Doyle W, et al. Medically refractory epilepsy in autism. Epilepsia (6):
Scorza FA, Arida RM, Terra VC, Cavalheiro EA. What can be done to reduce the risk of SUDEP? Epilepsy Behavior 2010; 18(3):
Tomson T, Walczak T, Sillanpää M, et al. Sudden unexpected death in epilepsy: a review of incidence and risk factors. Epilepsia 2005; 46(S11):

18. Seizure Control
I discussed on the earlier slide drug resistant epilepsy, or seizures that are hard to controll with medicine, puts a person at higher risk for SUDEP. About 1/3 of people with epilepsy have drug resistant epilepsy. The definition of DRE is where seizures keep occuring despite 2 good trials of seizure medication. A good trial of a seizue medication means that an appropriate medication was used for the patient’s epilepsy and an appropriate dose was achieved. The medication failed because of persistent seizures and not side effects. For example, if the patient was still in the procress of increasing the medication to the target dose, and then had to stop it because of side effects, we wouldn’t call this a drug failure.
Also, there are many types of epilepsy, and not all doctors specialize in epilepsy. Different medications work for each type of epilepsy. Sometimes doctors, despite their best intentions, prescribe the wrong seizure medication for a patient’s epilepsy. For example, tegretol for absence seizures, which can make it worse.
So, a patient is only drug resistant only if they have tried two or more appropriate medications for their epilepsy and failed them because of persistent seizures.

19. 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]
So you can get a better feel for the risk of SUDEP, let’s compare the risk of epilepsy and SUDEP with something that most people do everyday, like driving a car. Everyone with epilepsy has a 1 in 1,000 baseline risk for SUDEP, or 0.10%. However, with drug resistant epielspy, that risk of SUDEP increases to 1 in 150, 0.66%. Try to compare these risks with the lifetime risk of dying from a car accident. The probability of dying in an auto accident in a person’s lifetime is 1 in 83, or 1.2%. So while SUDEP is very scary, there are other risks at a similar level that people take every day without realizing it.
Sources:

20. 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
So after all of this talk about what SUDEP is, who is at risk, how you can lower your risk by having good control over your seizures, and ways to prevent seizures from happening in the first place, you may be wondering: how come my doctor never told me about SUDEP? All too often we learn of someone that has lost a loved one to SUDEP and never knew heard of it in the first place. Sometimes those families want to know why SUDEP was never brought up in any office visit until after their loved one passed away from SUDEP. There are many reasons why some doctors talk about SUDEP with all their patients while some doctors do not talk about SUDEP at all. Doctors that do not work exclusively with epilepsy patients may not know that SUDEP exists. If you are under their care instead of a specialist, you may not hear about SUDEP at all.
Even if you are under specialist care from a neurologist or epileptologist, you still may not have ever heard of SUDEP even though those doctors know SUDEP exists. So why is that? There are a number of reasons why not all doctors share the risk of SUDEP with their patients. Let’s face it: SUDEP is a scary thing that can happen without warning and no one knows why it happens. This can be very overwhelming for the patient and if the doctor tells you about SUDEP and you get scared, you may not hear all the ways to reduce your risk: good seizure control. You may only remember that there is a risk of SUDEP if you have epilepsy and forget all the tips talked about to prevent a seizure from happening in the first place. Doctors may also choose to discuss SUDEP with patients that are at highest risk, that is those suffering from seizures that are not under control or those suffering from generalized tonic-clonic seizures. As you remember, these patients risk of SUDEP is higher than those with other forms of epilepsy that are more controlled.
There is a big push in the medical field of epilepsy for all doctors to discuss the risk of SUDEP with each patient, regardless of his or her risk based on seizure type. While experts are saying this is the best approach, not all doctors agree for the reasons mentioned above. Part of the reason this webinar was created was to better educate the public on the issue of SUDEP – that it exists, that it is a tragic complication of epilepsy, and that there is research being done as we speak to better understand what causes it in the first place. While we do not know what causes it at this moment, you can do something to reduce your risk of this happening: you can work with your doctor to gain control over your seizures. There is no guarantee SUDEP will not occur, just like there is no guarantee you will not get skin cancer by using sunscreen, but you will be doing the one thing we know of that can reduce your risk of SUDEP.
If you have more questions you would like to ask with your doctor, be sure to call his or her office or ask at your next visit.
Sources:
Brodie MJ, Holmes GL. Should all patients be told about sudden unexpected death in epilepsy (SUDEP)? Pros and cons. Epilepsia 2008; 49(S9):
Hirsh LJ, Donner EJ, So EL, et al. Abbreviated report for the NIH/NINDS workshop on sudden unexpected death in epilepsy. Neurology 2011; 76(22):
Morton B, Richardson A, Duncan S. Sudden unexpected death in epilepsy (SUDEP): don’t ask, don’t tell? Journal of Neurology, Neurosurgery, and Psychiatry 2006; 77(2):

21. 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
The best way to prevent SUDEP is have fewer seizures. Listed are some ways which we will talk in detail about in subsequent slides. We will also talk about when seizures do happen, some good general safety measures to take to make sure the person having the seizure remains as safe as possible
Sources:
Hirsch LJ, Donner EJ, So EL, et al. Abbreviated report for the NIH/NINDS workshop on sudden unexpected death in epilepsy. Neurology 2011; 76(22):
Ridsdale L, Charlton J, Ashworth M, et al. Epilepsy mortality and risk factors for death in epilepsy: a population-based study. British Journal of General Practice 2011; 61(586):
Scorza FA, Arida RM, Terra VC, Cavalheiro EA. What can be done to reduce the risk of SUDEP? Epilepsy Behavior 2010; 18(3):
So EL, Bainbridge J, Buchhalter JR, et al. Report of the American Epilepsy Society and the Epilepsy Foundation Joint Task Force on Sudden Unexplained Death in Epilepsy. Epilepsia 2009; 50(4):

22. 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
Now we are going to talk about this to do to result the risk of SUDEP. As a physician, I can write prescriptions all day long, but if my patient doesn’t take it, well obviously it does no good. Medication control means that there is “buy in” on the part of the patient or their caretaker, meaning that they take full responsibility for taking the medication.
Why is this important? SUDEP victims have been found to have lower levels of seizure medication in their bloodstream- meaning that they weren’t get the medication for some reason, or maybe the dose the doctor prescribed was not enough.
Sometimes is it hard to remember when you need to take your medicine. A few ways that may help you remember are:
-Setting an alarm to go off at the same time each and every day, either on your phone or in your house, so that when it goes off, you know that it is time to take your medicine.
-Take the medicine at the same time you complete a task everyday. For example, some people take their medicine as soon as they brush their teeth in the morning. You want to make sure whatever task you use as a reminder to take your medicine that you do it at the same time each day. If you always wake up at 6AM, take your medicine once you wake up in the morning.
Be sure not to change or stop your medication without discussing with your doctor first. Make sure you call for a refill long before you run out of medicine. Another good thing to get in the habit of doing is to compare the label of your medicine bottle when you refill a prescription to the label on the medicine bottle you are finishing to make sure everything is the same. You want to look at the name of the medicine, the dosage, and what the instructions are on the label. You also want to look to see if the medicine is made by the same manufacturer. If you notice that anything is different on the label, you want to ask your pharmacist or doctor about the changes. All of these little tips will help make sure you continue taking the exact same medicine that has been working to control your seizures.
Sources:
Hirsch LJ, Donner EJ, So EL, et al. Abbreviated report for the NIH/NINDS workshop on sudden unexpected death in epilepsy. Neurology 2011; 76(22):

23. 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
Some thing will make it more likely for individual with epilepsy to have a seizure. We call these seizure triggers.
The prime reason is one we already discussed, which is not taking seizure medication as it prescribed. So,The most important thing you can do to avoid having a seizure is something we have already talked about: taking your medicine in the right amount and when you are supposed to.
Other triggers for seizures include,
Sleep deprivation- We know that missing sleep can trigger seizures. This is why it is important to have good sleep habits. Everybody needs a different amount sleep. Sleep enough to feel fully rested. Go to bed everynight and wake up in the morning at about the same time. Avoid caffeine in the afternoon. Avoid exercise before bed.
You should talk to your doctor about drinking alcohol. It may be important to avoid alcohol completely if your doctor advises you to do so; small amounts are safe in some patients- over the legal limit.
Rarely flashing lights or different sounds can trigger seizures in person with epilepsy, and they need to avoid these specific triggers.
Sources:
Hirsch LJ, Donner EJ, So EL, et al. Abbreviated report for the NIH/NINDS workshop on sudden unexpected death in epilepsy. Neurology 2011; 76(22):
“Managing students and seizures: a training for school nurses.” Epilepsy Foundation and the National Association for School Nurses.
Scorza FA, Arida RM, Terra VC, Cavalheiro EA. What can be done to reduce the risk of SUDEP? Epilepsy Behavior 2010; 18(3):
So EL, Bainbridge J, Buchhalter JR, et al. Report of the American Epilepsy Society and the Epilepsy Foundation Joint Task Force on Sudden Unexplained Death in Epilepsy. Epilepsia 2009; 50(4):

24. Where Can I Find Specialist Care?
Poor seizure control? Too many side effects? Consider seeing a specialist at a comprehensive epilepsy center
Epilepsyfoundation.org
Find closest local affiliate
National Association of Epilepsy Centers
As we talked about a 3rd of individuals with epilepsy, despite taking their medication as they are supposed to, will continue to have seizures. Sometimes side effects from some seizure medication can just be as bad as the seizures. Sometimes the side effects will be so bad that it will cause the person to stop taking their medication and be at risk of seizures again
In these cases, one should consider seeing a doctor that specializes in epilepsy, a so-called epileptologist, to get better control over their seizures. Epileptologists are experts in the diagnosis of epilepsy and its treatment. Making the right diagnosis, prescribing the right medication, can reduce the risk of seizures, and in turn, reduce the risk of SUDEP. If you are from NJ and would like to find the closest epileptologist near your home, visit the following website: If you are from another state, visit epilepsyfoundation.org for resources closest to you.

25. Seizure Safety

26. 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
Another good way to keep everyone safe when a person does have a seizure is to make sure everyone knows what to do if that happens. You can teach other family members, friends, neighbors, classmates, etc. to remember how to best take care of you or your loved one using the word “TRUST.” When someone has a seizure, you want to:
T: turn the person on his or her side
R: remove all objects around the person (remove his or her glasses, remove any sharps edges, clear the area of any dangerous objects, loosen the person’s tie or collar if possible)
U: use something soft, like a jacket or blanket, to put under the person’s head; (make sure their mouth and nose are not blocked with it)
S: stay calm and always stay with the person during the seizure. You also do not want to yell or shout at the person. Remain calm and talk to them in a soft, comforting voice.
T: time the length of the seizure – this is important information to share with the person and with their doctor. The length of the seizure should be recorded in the seizure log we talked about!
Another important tip is to make sure that you do not place any object in the person’s mouth during a seizure. You also do not want to restrain the person while having a seizure. Instead, keep that person safe by removing any dangerous objects in that area.
Sources:

27. 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
For the most part, seizures tend to stop on their own and the person that had the seizure returns to normal after some rest. If that is the case, there is no need to take that person to the emergency room or call There are a few cases when calling 911 is necessary. Some of these cases include:
-If this is the person’s first seizure
-If the person is pregnant or has diabetes
-If the person was injured during the seizure (for example, if the person hit his or her head, if the person got burned, etc).
-If the person has any trouble breathing
-If you see the seizure is lasting more than 5 minutes
You always want to stay with the person during the seizure. If you have enough help around and you need to call 911, always make sure someone stays with the person having the seizure.
Sources:
Friedman D. “Seizure safety and seizure risk: from first aid to SUDEP.” NYU Comprehensive Epilepsy Center.

28. 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).
On this slide, I wanted to go over a few basic seizure safety tips.
water safety is important to reduce the risk of drowning during a seizure. You never want to bathe in a bathtub alone. If you have epilepsy and have a child, you never want to bathe your child alone in case you happen to have a seizure during bath time. In the shower, use shower curtains if possible and leave the bathroom door unlocked in case someone needs to help you. Never swim alone and when you do swim, always let the life guard know you have epilepsy. When doing other outdoor things, such as biking or hiking, make sure you go with someone else and wear the proper equiipment, for example, a bike helmet.
When you are in the kitchen, try to cook when someone else is around. Use the rear burners first on your stove in case you have a seizure while cooking. If you use the ones on the back of the stove, you are less likely to get burned. When you drink a hot drink, like coffee or tea, use a lid or cover your cup to avoid getting burned during a seizure.
When you are at home and are doing some work around the house, do not climb ladders alone. Buy only new tools with an automatic shut off. Clear your home of clutter and sharp edges. If you can, put rugs over hard surfaces in case of falls. If you live alone, always make sure you check in with your family or neighbors. You may want to give family or neighbors a copy of a key to your home so that they can check on you if you miss a check in time with them.
If you are driving or using a machine when you get an aura, or that feeling you get before a seizure happens, be sure to pull over and stop what you are doing. This will keep you and others safe.
Sources:
Friedman D. “Seizure safety and seizure risk: from first aid to SUDEP.” NYU Comprehensive Epilepsy Center.

29. 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

30. SmartWatch by SmartMonitor
for those with the condition, their families and caretakers. Smart Monitor knows that the freedom of folks with epilepsy is curtailed by trepidation caused by the unpredictability of seizures, so it's created the SmartWatch. The device is a wristwatch, roughly the size of a WIMM One, that has a GPS module and a proprietary accelerometer/gyroscopic sensor inside to detect the excessive and repeated motions that occur during grand mal seizures. It then records the time, duration and location of the occurrences and sends that information via Bluetooth to the accompanying app on your Android smartphone (an iOS version is in the works). The app tracks and stores the info and automatically calls your designated caretakers to alert them of the seizure, thusly ensuring the safety of the watch wearer. The watch also has physical buttons on the side that allow users to cancel a false alert or manually send one out with a single press. Smart Monitor SmartWatch hands-on
Aside from the real-time safety net that comes with wearing the watch, it also provides valuable information to neurologists over the long term. When and where seizures take place is data that those who study and treat epilepsy find useful, and it can be quite difficult for folks to recall such info after a seizure. SmartWatch can give doctors an accurate long term look at a patient's episodic history that they wouldn't be able to obtain otherwise. Because it's a motion detection unit, the device is only for those who suffer from tonic clonic, or grand mal seizures, so it's not a universal seizure detector. However, the company's clinical trials with the device are ongoing, and Smart Monitor will submit it for FDA approval as a tonic clonic seizure sensor later this year.
From Company
SmartWatch is a patent protected, intelligent wristwatch that continuously monitors movements and alerts upon the onset of excessive or repetitive shaking motion. Automatic text message and phone call alerts are sent to designated family members and caregivers. Users can also summon help with a simple push of a “Help” button. The ability to track and record motion is an additional benefit of the SmartWatch. It records the time, duration and location of any unusual occurrences.  Users can securely access their archived information for later review.
The SmartWatch is currently available in two versions:
-          SmartWatch Standard
-          SmartWatch Premium
Click Here to Compare Features
The newly introduced SmartWatch Premium has all the safety and convenience features of the SmartWatch Standard, with even more attributes to bring peace-of-mind to the users and their family. In addition to continuous monitoring and the customizable sensitivity and duration levels, the SmartWatch Premium has the following capabilities:
GPS location: Physical location information of the SmartWatch user is included with alerts.
Snooze: The user can temporarily “pause” the watch if they know they are going to be participating in activities that may trigger an alert inadvertently
Multiple Contacts: Text message and phone call alerts can now be sent to multiple recipients
Often called the “peace-of-mind device”, SmartWatch is an easy-to-use, non-invasive, portable movement monitor. SmartWatch can be worn continuously – in and out of bed, indoors or outdoors, as people go about their day-to-day activities.
SmartWatch can alleviate fears that something could happen without being able to notify or get help in a timely fashion. SmartWatch offers autonomy and privacy for users and peace-of-mind for their families.
How SmartWatch Works SmartWatch works in conjunction with an Android smart phone:  We recommend the Nexus S 4G, Samsung Galaxy Nexus or Galaxy S II Skyrocket. The SmartWatch user needs to carry one of these phones with them or have it within a 10 foot range. When the SmartWatch detects movement outside a normal spectrum it wirelessly signals the smart phone which then automatically sends out text messages and phone calls to designated family members.

31. Emfit Movement Monitor (outside US and Canada: Emfit Tonic-Clonic Seizure Monitor
Emfit Tonic-Clonic Seizure Monitor NO CLINICAL STUDIES
Emfit’s tonic-clonic seizure monitor’s use is for detecting and notifying a caregiver if the person with epilepsy experiences a tonic-clonic seizure that causes faster, continued body movements while in bed. Additionally, it can also monitor an individual’s presence in bed and will give notification if the monitored person leaves the bed or does not return to the bed within a preset amount of time.  This feature can be disabled via a DIP switch located inside the control unit.  Available outside the USA/Canada only.  If you reside in the USA or Canada please see Movement Monitor
Overview
Testimonials
FAQ
Product overview
The Emfit tonic-clonic seizure monitor consists of two main components; a flexible and durable bed sensor (L-4060SL) placed under the mattress and a bed-side monitor (D G) with sophisticated embedded software. Together they detect the micro-movements of a person lying on the bed - even the heart beat and breathing, and the faster movements such as muscle spasms when person has a tonic-clonic seizure. There are no particular weight limits; sensitivity can be adjusted for child 2-12 years, adolescent 12-21 years, or adult.
The monitor can be placed next to the bed or on the wall using the included fastening bracket. It is operated with 2 pcs AA size 1,5 V batteries. An optional, medical grade AC adapter is also available.

32. Aremco DETECTION FUNCTIONS AVAILABLE
Depending on the sensor systems selected, any combination of the following detection functions can be included.
BED TIME BODY SPASMS
Using the movement sensor plate, a seizure alarm can be set to activate whenever spasms have an energy which is greater than a pre-set detection level and faster than a pre-set rate, as well as lasting for at least a pre-set alarm time delay period.
BODY BREATHING MOVEMENTS (ASSOCIATED WITH RES PIRATION) When the Monitor has detected a pattern of breathing movements via the sensor plate, this is indicated on the display. The monitor can be pre-set to detect cessation of breathing for periods of as short as 10 seconds or to as long as 60 seconds. The detection of respiration has an adjustable sensitivity threshold to compensate for variations in thickness, structure and composition of the mattress and the depth and degree of the user's breathing movements. This detection circuit will provide an automatic bed leaving alarm when the bed is vacated. If this feature is not required and the user cannot switch the alarm circuit off and on again, a bed occupancy detection sensor and relay circuit can be provided to cause a temporary disablement of the breathing alarm circuit while the bed is unoccupied.
RESPIRATION RATE
The monitor keeps track of the respiration rate and the display is updated every 10 seconds. Fast or Slow breathing rate alarms can be set to operate if the breathing rate detected falls outside pre-set limits.
TRANSIENT SOUNDS
A microphone is located in the top of the monitor enclosure. The monitor is designed to react only to transient or noncontinuous sounds, in order to eliminate the effect of background noises such as ventilation systems. The alarm is activated when a set number of transient sounds above a pre-set sound level occur within a pre-set time period. For example, it can be set to respond to a baby crying or personal vocalisations or to calls for help.
BODY FLUIDS (Perspiration and urination)
Excessive perspiration or bed wetting with urine can be a consequence of an epileptic seizure. A moisture detection sensor positioned under the bed sheet can activate an alarm if dampened with a fluid of sufficient electrical conductivity. The sensitivity to the conductivity of the fluid required to trigger the alarm can be adjusted in 5 steps between perspiration, which is least conductive, and urine, which is most conductive.
PILLOW MOISTURE (Saliva or vomit)
A moisture detection sensor positioned under the pillow cover can activate an alarm if it becomes dampened by a fluid of sufficient electrical conductivity. The sensitivity to the conductivity of the fluid required to trigger the alarm can be adjusted in 5 steps between saliva, which is least conductive, and vomit, which is most conductive.
BED OCCUPANCY
It is often necessary to know whether a person in care has vacated the bed. The use of a bed occupancy sensor connected to the monitor provides a bed leaving alarm function. It can also be used to prevent the respiration monitor from activating an alarm when a bed is vacated. The sensor can be either the Bedwatch device for location under a bed leg or a pressure sensitive mat for use in the bed underneath the user.
DISTRESS CALL
A call button switch can be plugged into the monitor which, when pressed manually by the user, will create an alarm condition.
AUXILIARY ALARM
This function enables a switch signal from an external device to be routed through the monitor and its alarm circuits.
MULTIFUNCTION ALARM OUTPUT
The monitor has a multi-purpose alarm output socket which can be used with a variety of wired connections to alternative alarm circuits e.g. nurse call systems, remote alarms, telephone autodiallers etc.
BATTERY BACKUP
The monitor is fitted with a back-up battery to supply power in the event of power failure via the AC Adaptor. The battery charge condition and performance is continually checked and battery charging occurs automatically with an indication when the battery is no longer serviceable. A battery level indicator shows the percentage of charge remaining in the battery.
INTEGRAL VISIBLE AND AUDIBLE ALARM
A highly visible red light on the monitor is always activated by the various alarm situations. In multiple use situations in a hospital ward it allows rapid identification of which user requires attention. The exact reason for the alarm is always displayed on the illuminated display screen. The monitor also has an in-built audible alarm that can be disabled to remain silent if not required.
RADIO TRANSMITTER (OPTIONAL)
The monitor can be supplied with an integral radio transmitter, if required. Alarm data can then be transmitted to a remote portable radio text pager or a computer monitoring station. The transmitted information includes the status of all the alarm conditions, the breathing rate and the monitor identification number. Each transmission is secured with an error checking code to protect the integrity of the data. Signals are sent every few seconds at randomised intervals to maximise the probability of receiving the information. The receiving device is able to give a warning in the event of a radio-link failure.
SPECIFICATIONS
(Sensing and detection components have no contact with the user and are provided seperately) Dimensions & Weight152 (W) x 70 (H) x 135mm (D), 700g Battery backup duration 5 days (Typically)Inputs
Motion detection (Black phono socket)Pillow Moisture (Blue phono socket)Body Moisture (Blue phono socket)Distress Call (Red phono socket), normally open<Auxiliary Input (Yellow phono socket), normally open or closedBed Leaving (3.5mm stereo socket), normally open and/or closedPower Supply(2.1mm DC socket) 12 volts DCOutputs
Relay output can be used to give normally open or normally closed contact output, or a voltage output to drive an external alarm.Cessation of breathing alarm
Response time adjustable from 10 to 60 seconds in 5 second stepsSlow breathing rate alarm
Breathing rate limit adjustable from 5 to 20 breaths per minute in 5 bpm stepsFast breathing rate alarm
Breathing rate limit adjustable from 30 to 60 breaths per minute in 5 bpm stepsSeizure alarm
Response time adjustable from 5 to 60 seconds in 5 second stepsSpasm rate setting 12 to 120 movements per minute.Transient sound alarm
Adjustable for 1 to 20 transient sounds, within an adjustable time period from 5It is not intended for this equipment to be used in diagnosis of medical conditions or for the measurement of any physiological processes. If the user is considered to be at risk it should not be used without medical advice and support.
When set up and used properly and in accordance with the instructions, the equipment can be used to provide warnings of detection of symptoms which may be related to particular conditions. The equipment, for a number of reasons, cannot always detect the symptoms being monitored and is not a substitute for direct supervision.

33. Neurovista
Seattle-based NeuroVista was founded in 2002 by Dr. Daniel DiLorenzo to develop an implantable device for the early detection of epileptic seizures.
The NeuroVista seizure advisory system is based on an implantable device that senses EEG irregularities that precede a seizure. Early warning allows patients to take medicine and find a safe place to lie down. Although some epilepsy sufferers can feel seizures coming, many cannot.
In NeuroVista’s Seizure Advisory System (SAS), intracranial EEG signals are recorded through electrodes implanted between the skull and the brain surface. Data storage and signal telemetry takes place within the pectorally-implanted can that transmits signals wirelessly to an external handheld device that processes the data and transmits visual and audible signals to the patient. The external pager-like receiver displays a blue light when there is a low likelihood of seizures, white indicates medium susceptibility, and red alerts to a high likelihood of impending seizure.

34. High Tech?

35. Where can I learn more about SUDEP?
Here are a list of websites with more information on SUDEP
Epilepsy Foundation:
Epilepsy. com
SUDEP Aware:
Epilepsy Bereaved:
The following websites listed have a lot of good information about SUDEP. Should you want to learn more about SUDEP, please feel free to visit the sites listed on the slide for more information. These sites, especially the Epilepsy Foundation’s and sudepaware.com are constantly being updated as research becomes more current. Please pass along the websites, along with the content of this webinar, to anyone that would like to learn more about epilepsy and SUDEP.
Sources:

36. Where can I get support?
Contact your local Epilepsy Foundation for support groups
For NJ residents:
For other states, find your local Epilepsy Foundation using:
Contact your local hospital for bereavement groups
If you need to speak with a healthcare professional in private, call your physician
If you have lost a loved one from SUDEP and are looking for more information for support groups in your area, please visit the following websites for more information:
If you are from nj, the Epilepsy Foundation of nj s website is abive
If you are from another state and would like to find the closest Epilepsy Foundation to you, please visit: The main Foundation site will let you find the closest Foundation to your home by entering your zip code.
Manytimes, local hospital systems offer face-to-face bereavement groups for families that have lost a loved one. While these groups may not be SUDEP specific, people do find it helpful to speak with others going through a similar loss. We encourage you to reach out to these groups to see if it may be something you would like to attend. Other bereavement groups may be offered through local organizations, like community religious centers as well
Your physican can also be a resource- especially if you are worried about your confidentiality.
Sources:

37. 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, (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

38. 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