Epilepsy in Adults: A Basic Introduction

Shahin Nouri, MDNew York Methodist HospitalDirector, Comprehensive Epilepsy Center

What Is the Difference Between Epilepsy & Seizures? A seizure is a brief, temporary disturbance in the electrical activity of the brainEpilepsy is a disorder characterized by recurring seizures (also known as seizure disorder)

A seizure is a symptom of epilepsy

To understand epilepsy, it is important to review the difference between epilepsy and seizures. Epilepsy is a generic term used to define a variety of disorders characterized by recurring seizures. A diagnosis of epilepsy means that a person has an underlying condition, such as a brain injury, that affects the delicate systems which govern how electrical energy behaves in the brain, making it susceptible to recurring seizures.

A seizure is a brief, temporary disturbance in the electrical activity of the brain. Seizures are a symptom of epilepsy. However, having a seizure does not necessarily mean that a person has epilepsy. There are other causes of seizures, including high fever, kidney failure, or lack of oxygen.

Epilepsy is not contagious. You cannot catch epilepsy from someone else and nobody can catch it from you. Many misconceptions surround epilepsy, and sometimes people inadvertently add to the negative image of the disorder by choice of language. Like all individuals with a disability, persons with epilepsy dislike labels, such as hes an epileptic. Epilepsy is a condition that a person has, not what they are. The preferred terminology is person with epilepsy. In addition, epilepsy should be referred to as a disorder, since it is not a disease by definition. It is a disorder characterized by a recurring disturbance in the electrical activity of the brain.

Who Has Epilepsy?About 2.3 million Americans have epilepsy

(0.5-1% of the population)Roughly 181,000 new cases of seizures and epilepsy occur each year50% of people with epilepsy develop seizures by the age of 25; however, anyone can get epilepsy at any timeNow there are as many people with epilepsy who are 60 or older as children aged 10 or younger

It may surprise you to know that 25 million Americans -- or about one in every ten people -- have had, or will have, a seizure at some point in their lives. You are not alone.

About 2.3 million Americans have epilepsy. In addition, roughly 181,000 new cases of seizures and epilepsy occur each year. Unfortunately, it is estimated that a large number of children and adults have undetected or untreated epilepsy.

Anyone can get epilepsy at any time; however, 50% of people with epilepsy develop seizures by the age of 25. Epilepsy is increasingly common among older people, which, as we will discuss in more detail later, is primarily related to an increase in cardiovascular disease, Alzheimers disease, stroke, and brain tumors. Now, there are as many people with epilepsy 60 years of age and older as children 10 years of age and under.

Question: How many people here know the cause of their epilepsy? If you know, can you share what it is?

The Brain Is the Source of Epilepsy

All brain functions -- including feeling, seeing, thinking, and moving muscles -- depend on electrical signals passed between nerve cells in the brain

A seizure occurs when too many nerve cells in the brain fire too quickly causing an electrical storm

To understand how epilepsy arises, we must briefly outline how the brain functions normally. The brain consists of millions of nerve cells, or neurons, and their supporting structure. Each neuron can get electrical signals from other neurons and pass them on to others. All the functions of the brain, including feeling, seeing, thinking, and moving muscles depend on electrical signals being passed from one neuron to the next, the message being modified as required. The normal brain is constantly generating electrical signals in an orderly way.

In epilepsy, this order is disrupted by some neurons discharging signals inappropriately. There may be a brief electrical storm arising from neurons that are inherently unstable because of a genetic defect (as in the various types of inherited epilepsy), or from neurons made unstable by metabolic abnormalities such as low blood sugar or alcohol. Alternatively, the abnormal discharge may come from a localized area of the brain, as when epilepsy is caused by head injury or brain tumor.

A seizure is a massive disruption of the electrical communication between neurons. If enough neurons are involved, the discharge of electrical impulses will produce symptoms. The result could be any number of different sensations or behaviors such as sudden muscle jerk, an abrupt fall, or distorted vision. If the disturbance flashes across the whole brain at once, it could produce a convulsive seizure (convulsion), temporarily disrupting many functions of the brain.

What Causes Epilepsy?In about 70% of people with epilepsy, the cause is not knownIn 30%, most common causes are:

- Head traumaInfection of brain tissueBrain tumor and strokeHeredity- Prenatal disturbance of brain development

-Most people with epilepsy wonder what caused their disorder; yet in as many as 7 out of 10 people with epilepsy, no specific cause can be found. Among the rest, the cause may be any one of a number of things that can make a difference in the way the brain works.

Head trauma can occur for a number of reasons, including automobile accidents, gunshot wounds, sports accidents, or falls or blows. The more severe the injury, the greater the risk of developing epilepsy. Lead and alcohol are examples of poisons that can damage the brain. In fact, each year more than 5,000 people have a seizure caused by alcoholism. A number of serious infections and causes of inflammation can lead to brain injury, including meningitis, viral encephalitis, and lupus erythematosus. The brain of a fetus may not develop properly during pregnancy, or a lack of oxygen during birth may damage delicate electrical systems within the brain. Finally, heredity plays a role. People may inherit varying degrees of susceptibility to seizures. This is assumed to be more likely when no other specific cause of seizures can be identified. In seniors, epilepsy may be due to stroke, Alzheimers disease, or other head trauma.

Because the cause is unknown or irreversible in so many people with epilepsy, we need to keep in mind that the important thing is how to live well with a seizure disorder. We need to focus on how to best control the seizures and how to cope with the issues that having a seizure disorder creates.

What Happens During a SeizureGeneralized seizureInvolve the whole brain and loss of consciousnessAbsence: characterized by brief loss of consciousnessTonic-clonic: characterized by rhythmic jerking of musclesPartial seizure Involve only part of the brain; may or may not include loss of consciousnessSymptoms relate to the part of the brain affected

Seizures may be convulsions, short periods of unconsciousness, distortion of the senses, or loss of control over movement. The kind of seizure a person has depends on where in his brain the abnormal electrical activity starts and where it spreads. There are two primary types of seizures: generalized seizures produced by electrical dysfunction throughout the brain, and partial seizures, in which only part of the brain is affected. Seizures are further classified by their appearance.

The ABSENCE seizure is a generalized seizure characterized by a brief loss of consciousness, which usually lasts no more than a few seconds. While its going on, the person is essentially absent. These seizures are frequently overlooked, often being mistaken for daydreaming. The GENERALIZED TONIC-CLONIC seizure (or grand mal) also involves the whole brain at once. This is what most people know as an epileptic seizure or convulsion. When these seizures start, the muscles contract simultaneously, becoming very rigid and the person may cry out as breath is forced out of the lungs when the diaphragm contracts. The person loses consciousness and will fall down if standing. Then, a rhythmic jerking of the head, legs, and arms may occur as massive signals from the brain stimulate the muscles to alternately tense and relax. Generalized means that it affects the whole brain.

The symptoms of a partial seizure relate to the normal function of the brain area that is involved. The person may experience involuntary movements or tingling, light flashes, or other symptoms. There are two forms of partial seizures, simple and complex. Simple partial seizures are generally brief and do not involve loss of consciousness. In contrast, complex partial seizures affect awareness. A person having this type of seizure will be unaware of his surroundings during the seizure, may wander aimlessly, run, do a series of repetitive movements, pick at clothes, chew, mumble and, to a casual onlooker, appear to be drunk, on drugs or even mentally ill. After the seizure ends, the person will have little or no memory of the actual seizure or what happened during it.

Classifying Epilepsy and Seizures Classifying epilepsy involves more than just

seizure type Seizure types:

Partial GeneralizedSimpleComplexAbsenceConvulsiveConsciousnessis maintainedConsciousnessis lost or impairedAltered awarenessCharacterized bymuscle contractionswith or without lossof consciousness

Epilepsy is classified by the seizure type as well as additional important information, including typical brain-wave recordings, clinical features such as behavior during the seizure, the expected course of the disorder, precipitating factors, expected response to treatment, and genetic features.

In addition, it is possible for a person with epilepsy to have more than one kind of seizure. The type of seizure depends on which part and how much of the brain is affected by the sudden electrical discharge. Partial seizures are the most common type of seizure experienced by people with epilepsy.

Seizures that begin early in life may change into different seizure types as the child grows older. If a family member or caretaker notes that a person with epilepsy is having new seizure patterns, they should alert the treating physician; this may help determine the most effective medication and provide a more accurate picture of how the condition will progress.

Symptoms That May Indicate a Seizure DisorderPeriods of blackout or confused memoryOccasional fainting spellsEpisodes of blank staringSudden falls for no apparent reasonEpisodes of blinking or chewing at inappropriate timesA convulsion, with or without feverClusters of swift jerking movements in babies

Only a doctor can say for certain whether or not a person has epilepsy. But many people miss the more subtle signs of the condition and therefore also miss the opportunity for early diagnosis and treatment. Learning about epilepsy early and working to control seizures can often help to minimize the impact of the disorder.

The symptoms listed on the slide are not necessarily indicators of epilepsy and do not include all of the symptoms of seizures. These symptoms may be caused by some other, unrelated condition. However, if one or more is present, a medical checkup is recommended.

These symptoms include:

Periods of blackout or confused memoryOccasional fainting spells in which bladder or bowel control is lost, followed by extreme fatigueEpisodes of blank staring in children; brief periods when theres no response to questions or instructionsSudden falls in a child for no apparent reasonEpisodes of blinking or chewing at inappropriate timesA convulsion, with or without feverClusters of swift jerking movements in babies

Question: Have any of you identified activities or substances that seem to trigger your seizures?

Everything you do, you do with your brain!

Different parts have different functions, and different seizures!

Clinical AssessmentPatient historyTests (blood, EEG, CT, MRI or PET scans)Neurologic examID of seizure typeClinical evaluation

to look for causesHow Is Epilepsy Diagnosed?

Now lets discuss how epilepsy is diagnosed. The doctors main tool in diagnosing epilepsy is a careful medical history with as much information as possible about what the seizures looked like and what happened just before they began. Because the effectiveness of several antiepilepsy drugs is specific to partial or generalized seizures, determining the seizure type is important information for the physician. A detailed description of what happened during the seizure is usually the most reliable indicator of whether a seizure is partial or generalized.

When doctors try to find out what caused a seizure, they look for chemical imbalances in the blood, infections, and any event in a persons medical history that could have injured the brain in some way. Information from each test and examination adds a piece of evidence to help the doctor solve the puzzle.

The doctors assessment will also probably include supporting tests, such as blood tests and other clinical tests, to be sure that the person has epileptic seizures and not some other type of episode such as fainting, breath-holding (in children), or low blood sugar.

Question: What are some of the things you think are important to tell your doctor about your seizures?

What to Tell Your Doctor About Your SeizuresSymptomsSeizure patternsPre-seizure activity (if any)How you felt after the seizure

Consider keeping a seizure record

Telling your doctor everything you can about your seizures will help him or her diagnose and treat them. It is important to tell the doctor about any seizures or side effects that have occurred since your last visit. A seizure record -- filled out by the patient or someone in the family -- can be extremely helpful, especially when seizures start or change patterns. It can be difficult to remember all the details a week or two after it happens, so we suggest you record observations as soon as possible. You can take the completed form to the doctor, and use it to help talk about the seizure.

Sometimes people hesitate to say theyre not feeling well, or that they have been having seizures. They dont want to disappoint the doctor. Or they may be afraid he or she will be angry that treatment is not working. But unless the doctor knows that seizures are occurring, he or she cant make the adjustments that might prevent them.

Or, it may be tempting to say youre seizure-free, thinking that only big seizures matter or that you wont be allowed to drive. But it is very important for the doctor to know about blackouts, auras, or little fragmentary seizures. This information may make a difference in the kind of medicine you take, or the dose, or in how safe it is for you to drive.

Tools to Confirm the Diagnosis of EpilepsyEEG Imaging Scans (Abnormal electricity)(Lesions)

Apart from the patient history and the neurologic exam, the electroencephalograph (EEG) is the most important tool in the diagnosis of seizures and epilepsy. It provides a record of ongoing electrical activity in the brain.

The EEG uses a machine to record brain waves picked up by tiny cup electrodes taped to the head. Electrical signals from brain cells are recorded as wavy lines by the machine. Brain waves during or between seizures may show special patterns which help the doctor decide whether or not someone has had a seizure. Excessive discharge of neurons may show up as a sharp spike or series of spikes. However, while the EEG is almost always abnormal during a seizure, it may be normal between seizures. A lack of EEG abnormalities between seizures does not exclude the diagnosis of epilepsy. In fact, as many as 40% of people with epilepsy have consistently normal EEGs.

Imaging methods such as CT (computerized tomography), MRI (magnetic resonance imaging), or PET (positron emission transmission) scans may be used to search for any growths, scars, or other physical conditions in the brain that may be causing the seizures.

Seizure TriggersMissed medication (#1 reason)Stress, anxietyHormonal changes, MensesDehydrationLack of sleep, extreme fatiguePhotosensitivityIllicit Drug, alcohol use Certain MedicationsFever in Some Children

Over time, some people with epilepsy become aware of certain activities that appear to trigger their seizures -- avoiding these triggers may decrease the frequency of seizures.

The most common cause for a breakthrough seizure is missed medication. It is estimated that about half of the people taking medication for epilepsy dont take it as prescribed. Other possible triggers include stress/anxiety, exertion or fatigue or dehydration, lack of sleep, and hormonal cycles in women. Some individuals have photosensitive epilepsy. If so, flashing lights or alternating sun/shade may trigger seizures. Use of alcohol should be discussed with the physician and use of street drugs should be avoided. Even some over-the-counter medicines should be avoided when taking epilepsy medications, except under the advice of a physician.

Just as with the causes of epilepsy, triggers are often not known or not present. It is important that children and adults with epilepsy not be blamed for having a seizure. Nor should they be prevented from participating in a full range of activities unless they or their parents or their physician request an accommodation.

Question: Now Im going to focus on first aid for seizures. When you think of helping someone whos having a seizure, what is your first instinct?

MENTOR: Start video Seizure First Aid. Stop when VCR counter reaches 3:14.

Treatment Goals in EpilepsyHelp person with epilepsy lead full and productive life

Eliminate seizures without producing side effects

Tailor treatment to needs of individuals/special populations :

Women, Children, Elderly, Hepatic or renal failure and other diseases

Epilepsy therapy is designed to prevent seizures through medical, surgical, or dietary measures, and to lessen the consequences of epilepsy and seizures. The primary goal of treatment is to help the person with epilepsy lead a full and productive life, with minimal effects from the disorder or its treatment.

When a person experiences a single seizure, or has a history of questionable events that may or may not have been seizures, the first issue is to determine what happened, the possible cause, and the future prognosis. Once this information is gathered, the next question is whether to treat the underlying condition -- if one has been identified and it is treatable -- or whether to treat the symptoms by prescribing an antiepileptic (or seizure-preventing) drug.

Prescribing one or more antiepileptic drugs to prevent seizures is currently the first choice of treatment for most forms of epilepsy.

What if not treated?Seizures can be potentially life threatening with brain failure, heart and lung failure, trauma, accidentsSudden Unexpected Death in Epilepsy (SUDEP)Even subtle seizures can cause small damage in brainLong Term problems: fall in IQ, depression, suicide, Social Problems, Quality of Life

Types of TreatmentMedicationSurgeryNonpharmacologic treatmentKetogenic dietVagus nerve stimulationLifestyle modifications

Current treatment methods can achieve full or partial control of seizures in about 80% of people with epilepsy. The four major forms of treatment include medication, surgery, diet, and vagus nerve stimulation.

Long-term anticonvulsant (or antiepileptic) drug therapy is the major form of treatment. More than 20 antiepileptic drugs are currently in use. Most people are treated with one of these drugs; however, some may require two or more for the best control of seizures.

Surgery may be tried when medicines fail. Most often, surgery is used when the brain tissue causing seizures is confined to a small area of the brain that can be safely removed without damaging personality or function.

Some people have good luck with the ketogenic diet, a special high-fat, restricted calorie diet. This may be tried in children who do not respond to standard medications.

Vagus nerve stimulation (VNS) may also be an option when seizures are hard to control. It involves implantation of a small battery in the chest wall which is linked by electrodes to a major nerve in the neck. The device is programmed to deliver small bursts of electrical energy into the brain via the vagus nerve.

Lifestyle modifications center around identifying factors that trigger seizures, and avoiding them to minimize the potential for seizure.

Considerations in Epilepsy Management

Age andGenderSeizure FrequencyUnderlying PathologyComorbiditiesMedication Side EffectsSyndrome vs Seizure Type

Factors That Affect the Choice of DrugSeizure type/

Epilepsy syndromeSide effects & safetyPatient ageEase of Use

LifestyleAge, Sex, Childbearing potentialOther medications

Since drug therapy is usually the first treatment used, lets start by talking about it. Different types of seizures and epilepsy syndromes have unique features, which may affect the choice of medication, since some drugs are more effective against specific seizures and syndromes. Achieving good control of seizures with drug treatment generally depends on choosing the right drug, minimizing the number of drugs prescribed, and educating the patient and family to encourage daily use as prescribed.

Other factors that can affect the choice of drug include potential side effects, the dosing regimen -- whether it is simple or difficult to follow -- the age of the patient, childbearing potential, use of other medications, lifestyle, and, in some cases, cost.

Whenever possible, using one drug is preferred. This drug may be prescribed in increasing doses until seizures are controlled or a side effect occurs. If the drug is not effective, or if side effects are hard to live with, this drug will probably be gradually stopped while another one is slowly introduced.

Question: How many of you had to try more than one drug before finding one that effectively reduced your seizures? What was the most common reason for changing the medication?

Consistent useInadequate dosage or ineffective medicationDrug factorsDisease

Seizures eliminated(50% of people)Seizures markedlyreduced (30%)Seizures do notrespond (20%)Factors That Influence Response to Medication

In general, antiepileptic drugs eliminate seizures for about half of all patients with epilepsy; for another 20-30%, the intensity and number of seizures is reduced to the point where the person can live and work normally. The seizures in the remaining 20% of people with epilepsy do not respond to current medications, and their condition is termed refractory to treatment. Some benefit from other treatment options, such as surgery, vagus nerve stimulation, or the ketogenic diet.

Whether or not a person is taking medication regularly as prescribed, is one of the biggest factors that influences response to drug treatment. Taking medications regularly and exactly as the doctor prescribed iis a challenge for people with many kinds of long term illnesses. In fact, some estimates suggest that up to 50% of people dont take their medicine as directed. However, it is particularly important in epilepsy treatment because of the risk of seizures if the level of drug in the bloodstream falls too low. Things that help people take meds consistently include pill reminder boxes, calendars, and watches with beeper alarms. Some doctors also monitor blood levels of the drug from time to time to encourage their patients to remember their meds, since a low level would suggest that not enough medication is being taken.

Other factors that can influence an individuals response include how the drug is metabolized or digested within the body, and illness.

Question: Have you discussed potential side effects with your treatment team?

Tolerating MedicationsMost Common Side EffectsRashClumsinessDrowsinessIrritabilityNausea

Side effects may be related to doseCare must be taken in discontinuing drug due to risk of seizure recurrence

Warning Signs of Possible Serious Side EffectsProlonged feverRash, nausea/vomitingSevere sore throatMouth ulcersEasy bruisingPinpoint bleedingWeaknessFatigueSwollen glandsLack of appetiteAbdominal pain

Like many drugs, epilepsy medicines have side effects. Some are dose-related: the higher the dose, the more likely the effect. Sedation, slurring of speech, and unsteadiness are common effects of antiepileptic drugs at high doses. Similar effects may occur at standard doses at the beginning of treatment, and then slowly go away as the body gets used to the drug.

Other side effects are associated with specific medications and occur fairly frequently, regardless of the dose. The most common side effects associated with epilepsy medicines are: drowsiness, irritability, nausea, rash, and clumsiness. Some drugs produce changes in emotions, memory or behavior, or affect learning.

Persons taking antiepilepsy drugs should be aware of the individual side effect profiles, and report changes in health, behavior, or mood to their physician. Instances of prolonged fever, rashes, severe sore throat, mouth ulcers, easy bruising or pinpoint bleeding under the skin, weakness, fatigue, swollen glands, or lack of appetite may be signs that serious problems are developing and should be reported to the doctor at once.

Question: What do you tell your doctor when you experience something you think is a medication side effect?

Positive Characteristics of New Seizure MedicationsEfficacy at least equal to older agents.Many possess broad spectrum of activity.Most also good as single agent.Safer, better tolerated, improved quality of living.Blood testing often not necessary.Less live metabolism and protein binding.Less drug interactions.

Epilepsy SurgeryFactors influencing decisionLikelihood seizures are due to epilepsyLikelihood surgery will helpAbility to identify focus of seizuresOther treatments attempted, and seizures couldnt be treated with 2-3 medications Benefits vs risks

When antiepileptic drugs fail to control or substantially reduce seizures, surgery on the brain may be considered. Although some of the techniques are recent, surgical removal of seizure-producing areas of the brain has been an accepted form of treatment for more than 50 years. Most surgical patients are adults who have fought long and unsuccessful battles for seizure control. However, children with severe seizures are also being treated with surgery.

Brain surgery for epilepsy involves either 1) removal of tissue from the area where seizures arise or 2) interruption of nerve pathways along which seizure impulses spread.

In trying to decide whether to use surgery, doctors consider whether the problem is really epilepsy, and whether the type of seizure can potentially be helped by an operation. Surgery is limited to certain types of seizures. Doctors will also want to know what efforts have been made in the past to control seizures, including drug treatments and diet. Finally, they try to weigh whether the condition might get better or worse with surgery, and assess the potential benefits to the person versus the potential risks. It is reported that surgery is successful in many patients, although the success depends on many factors.

Vagus Nerve StimulationDevice is implanted to control seizures by delivering electrical stimulation to the vagus nerve in the neck, which relays impulses to widespread areas of the brainUsed to treat partial seizures when medication does not work

Courtesy of Cyberonics Inc.

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Other treatments that are useful for some people with epilepsy include vagus nerve stimulation and the ketogenic diet. Vagus nerve stimulation is a relatively new procedure. It involves implanting an electronic device in the upper chest to control seizures by delivering electrical stimulation to the vagus nerve in the neck. It has been approved by the US Food and Drug Administration for use in treating partial seizures in adults and adolescents over 12 after medical therapy has failed to control the seizures.

Once implanted, the device delivers a regular pattern of stimulation. Persons can turn the device on if they feel a seizure coming on by use of a special magnet, which in some cases may prevent the seizures.

Medical studies of the device suggest that some patients will gain some benefit from the device although complete seizure control is rare. Most people continue to take antiepileptic drugs while receiving vagus nerve stimulation. The most commonly reported side effects are hoarseness, coughing and breathlessness.

Ketogenic DietBased on finding that starvation -- which burns fat for energy -- has an antiepileptic effectUsed primarily to treat severe childhood epilepsy, has been effective in some adults & adolescentsHigh fat, low carbohydrate

and protein intakeUsually started in hospitalRequires strong family commitment

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The ketogenic diet is not a drug; however, it helps the body to make substances that have an antiepileptic effect. The diet is based on the observation that starvation, which burns fat for energy and produces ketones, has an antiepileptic effect. The goal of the diet is to make the body get its energy from fat and become ketotic. The diet is used primarily to treat severe childhood epilepsy.

Persons who follow the diet are instructed to eat foods high in fat and low in carbohydrate and protein. Usually, the diet is started in the hospital so that physicians may monitor the progress. The exact reasons why the diet works remain unclear. Medical studies suggest that about one-third of patients are substantially helped, another third have some reduction in seizure, and one third have no change.

Children may be kept on the diet for months or years. There are side effects, but not all children experience them. Like antiepileptic drugs, the ketogenic diet should be tapered rather than stopping abruptly. A great deal of care must be taken when the diet is used in children taking medications, since these may contain sugar to make them more palatable to the child. Parent and family education and a strong family commitment to the diet, plus administration by a doctor and dietician trained in its use, are generally considered vital to success.

People with epilepsy should not fast in the hope that it will help their seizure; in fact, fasting may trigger seizures. The keto diet is serious medicine, with its own set of side effects, and should never be tried without medical advice.

Stay calm and track timeProtect head, remove glasses, loosen tight neckwearMove anything hard or sharp out of the wayTurn person on one side, position mouth to groundCheck for epilepsy or seizure disorder IDUnderstand that verbal instructions may not be obeyedStay until person is fully aware and help reorient themCall ambulance if seizure lasts more than 5 minutes or if it is unknown whether the person has had prior seizures

First Aid for Seizures

This graphic shows general measures to assist a person who is having a seizure. First, stay calm and reassure other people. Track how long the seizure lasts. Protect the person by helping them avoid hazards. Place something soft under the head (a coat, T-shirt or similarly appropriate item thats handy); if the person is wearing glasses, remove them. Loosen any clothing that is tight-fitting around the neck. With a generalized tonic-clonic seizure, turn the person on one side to keep the airway clear.

Check for an epilepsy or seizure disorder ID, and wait for the seizure to end. Understand that verbal instructions may not be obeyed. Finally, stay until the person is fully aware and help reorient them to their surroundings.

Call an ambulance if the seizure lasts more than 5 minutes, unless you know that the persons seizures typically last longer than 5 minutes. Remember, unless you are a primary caregiver who has been trained in use of a special medication, or you have been shown how to use a special VNS magnet, there is NOTHING you can do to stop a seizure -- it will run its own course. You CAN protect the person from injury, observe the seizure, call for an ambulance if necessary, and reassure others that this is just a seizure and everything will be just fine in a few moments.

NOTE: If asked, the medication is diazepam rectal gel (Diastat) or a liquid form of diazepam for rectal administration. It is for family/caregiver/nurse use only, not a casual first aid.

Question: Sometimes things we do with good intentions can actually be dangerous to the person having a seizure. Can you think of things that may be harmful?

Potentially Dangerous Responses to SeizureDont restrain person Dont put anything in the persons mouthDont try to hold down or restrain the personDont attempt to give oral antiseizure medicationDont keep the person on their back face up

There are several common responses to a generalized tonic-clonic seizure that may be extremely harmful to the person experiencing a seizure.

Do not put anything in the persons mouth. One of the most common myths about providing first aid to persons experiencing seizures is that you must put something in their mouths to prevent them from swallowing their tongues. In fact, this is one of the most harmful, unnecessary responses to a tonic-clonic seizure. The persons tongue is attached and cannot be swallowed. Any object placed in the mouth could do serious harm -- such as breaking teeth or jaw. Even worse, the object may block the persons airway.

Do not attempt to give the person antiseizure medication by mouth, and do not give food or drink until the person is fully aware. Finally, do not hold down or restrain movement. During a seizure the brain is sending instructions to various parts of the body. Even if that part of the body is restrained, for instance an arm or leg, it will still follow the instruction(s) received from the brain. Outside restraint could thus lead to sprained or torn muscles or even a broken bone. Finally, do not keep the person on his back, facing up throughout the convulsion. This may increase the risk that the person will inhale (aspirate) gastric fluids and suffocate.

When to Call 911 or Emergency Medical ServicesA convulsive seizure occurs in a person not known to have seizures or lasts more than 5 minutesA complex partial seizure lasts more than 5 minutes BEYOND its usual duration for the individualAnother seizure begins before the person regains consciousnessAlso call if the person:Is injured or pregnantHas diabetes/other medical condition Recovers slowlyDoes not resume normal breathing

Call for an ambulance when:A convulsive seizure occurs in a person not known to have seizures, orA convulsive seizure lasts more than 5 minutes, orA complex partial seizure lasts more than 5 minutes BEYOND its usual duration for the individual, orAnother seizure begins before the person regains consciousnessAlso call if the person:Is injuredIs pregnantHas diabetes or other medical conditionRecovers slowlyDoes not resume normal breathing. If a person is not breathing following a seizure, rescue breathing should be begun.

MENTOR: Restart video Seizure First Aid and play through the end.

Safety Issues for Patients with Epilepsy Cant Drive for about a year after the last seizure (NY State)Climbing altitudesSwimming/ Bathing aloneOperating heavy machinery or weapons that can be dangerousCooking, hot waterTaking care of babiesBone Health

Effect of Epilepsy on FamilyI just need to remember that things happen for a reason, and that we will cope with whatever comes our way. It is okay not to like it, as seizures arent fun and can be scary.Epilepsy doesnt have to rule our lives -- as long as we have people who will listen to us, believe us, and give us honest answers.

Question: What do you find is the biggest effect of epilepsy in your life? In your familys lives?

Epilepsy can have a very real effect on the entire family of a person with the disorder. Changes that accompany a diagnosis may include restrictions on family activities or outings, and financial stresses due to hospitalization or need to purchase medications. Emotional changes are also common, including feelings of isolation from others and fear, anger, or embarrassment about the disorder. Siblings of a person with epilepsy may feel that they no longer get as much attention from their parents, or may feel excluded from important family matters.

Epilepsy in WomenHormonal effectsHormonal changes during puberty, menopause, and the monthly cycle may affect seizure frequencyPolycystic ovary syndromeSexuality & contraceptionSexual dysfunctionBirth control pills may be less effectivePregnancy & motherhoodNeed to continue medicationSlight increased risk for birth defects

More than one million women and girls in the United States have epilepsy. While many issues they face are common to both sexes, women with epilepsy must deal with unique levels of uncertainty at various points in their reproductive lives.

For instance, hormonal changes in the balance between estrogen and progesterone in womens monthly menstrual cycles may affect seizure frequency. In addition, hormonal changes at puberty may affect seizure control, making it especially important for the family and doctor to provide support and information for growing girls.

Fertility is lowered among some women with epilepsy, possibly because of the higher risk for reproductive disorders, such as menstrual abnormalities or irregularities and polycystic ovary syndrome. Also, sexual dysfunction may occur in women or men with epilepsy, and may be due to epilepsy, its treatment, or the psychological impact of the disorder. Antiepileptic drugs can lower the effectiveness of birth control pills. Fortunately, this can usually be overcome by taking higher doses of birth control pills as directed by the physician.

There is an increase risk of birth defects in the children of women with epilepsy. Antiepileptic drugs and having seizures are believed to be the cause of the increase. In general, a woman working with her doctor and taking folic acid supplements before conception has the best chance of minimizing risks to the baby. All women, including those with epilepsy, should supplement their diet with folic acid prior to becoming and when pregnant. Finally, it is important for a woman with epilepsy to discuss antiepileptic medications with her physician when she is considering becoming pregnant -- do not stop them on your own.

Epilepsy in Older AdultsEpilepsy is common in the elderly, and is often unrecognized or misdiagnosedOlder people face increased treatment risksMaintaining independence is a challenge after the diagnosis ofepilepsy

Recent studies show that epilepsy is actually increasing most rapidly in people older than 65 years, primarily due to diseases including Alzheimers disease, brain tumors, stroke, and head trauma.

Treatment of epilepsy in older people is similar to treatment in other age groups; however, there are distinct concerns in this group. Medication is typically metabolized more slowly in older people. A dose that can be taken without problems by a younger person may produce toxic effects in an older person. In addition, older people are often taking drugs to treat other conditions, increasing the potential for an adverse reaction between the different medications. In some cases, merely remembering when and how much medication to take -- particularly when the person must take several medications everyday-- can be difficult.

While many elderly people with seizures are able to maintain their independence and live normally, for others, the development of seizures is the final event that leads to loss of independence and placement in a nursing home.

Groups at Increased Risk for EpilepsyAbout 1% of the general population develops epilepsyThe risk is higher in people with certain medical conditions:Mental retardationCerebral palsyAlzheimers diseaseStrokeAutism

About 1% of the general population develops epilepsy. However, individuals with certain medical conditions are at higher risk. It is estimated that epilepsy can be expected to develop in:* 10% of children with mental retardation or autism* 1 in 3 children with cerebral palsy* 50% of children with both cerebral palsy and mental retardation* 10% of patients with Alzheimers disease* 22% of patients who have had a stroke

Epilepsy in Infants & Young ChildrenBalancing normal development and the special concerns of epilepsyGood parenting skillsChildcareEffects on brothers and sistersEarly childhood intervention

services

The early childhood years are full of changes as your child grows up physically, socially, and emotionally. Parents of a child with epilepsy face a balancing act between encouraging the normal stages of development to take place and handling the special circumstances that epilepsy especially hard to control epilepsy - may create. The goal is to try as much as possible to keep epilepsy as one part of your childs life, and not let it define who your child is or is to become.

Basic parenting skills -- such as showing affection, providing security and safety, discipline, and communication are just as important when a child has epilepsy as they are for any child.

Childcare, babysitters, and respite care are all important concerns for parents of young children with epilepsy. Also, remember that interacting with non-family members can be beneficial for your child -- it can help him or her gain self-confidence and independence.

Early childhood intervention services are available through a federal program and are designed to help developmentally delayed children from birth to age 3 years. The goal is to help children achieve the best development possible. You can access these services through your childs physician.

Epilepsy in Children Aged 6-12Handling feelingsFamily relationshipsSafetySchool and childcareDevelopmental stages

The diagnosis of epilepsy carries with it many feelings, ranging from fear and guilt to anger and depression. These feelings and concerns are shared by most families who live with a person with epilepsy. Its important to acknowledge those feelings, and talking with others who have similar experiences can be very helpful.

Family relationships are also a concern for people with epilepsy. Even though your child is the person who has seizures, other family members have to deal with the changes created by epilepsy. They may, without realizing it, treat your child differently. Research shows that a good self-concept for a child with epilepsy is more a result of family interactions than seizure control. Trying to keep your focus on how the whole family is handling this disorder, and getting some help to handle stress or problems if you feel you need it can help family adjustment.

As a child grows, parents find themselves performing a balancing act between allowing the childs freedom and providing a safe, secure environment. A childs level of seizure control will obviously affect how those choices are made. In general, children with epilepsy should be able to do everything that other kids do, within the limits of their individual abilities. Help on safety issues, as well as school, childcare, and development issues is available through the Epilepsy Foundation and other community resources.

Epilepsy in Teens & Young AdultsAssuming responsibilityDealing with feelingsFriends and social pressuresSchoolDrivingDrinkingDatingEmployment

Teens and young adults with epilepsy must deal with normal coming-of-age issues as well as special concerns about epilepsy. Most probably have a lot of questions. For example, what kind of plans can they make for jobs, college, getting married, and even driving? It can be hard for these young people to find someone to talk to.

The Epilepsy Foundation provides informational materials, as well as a toll-free telephone number where teens can ask questions and get straight answers. In addition, the Epilepsy Foundation website includes several chat rooms specifically for teens to interact. Areas that can be addressed include taking charge of epilepsy, dealing with feelings, friends and social pressures, and school issues, among others. In addition, the local Epilepsy Foundation can help you get information about driving regulations in your state.

Other Treatment ApproachesBehavioral therapyBiofeedbackRelaxationPositive reinforcementCognitive therapyAromatherapy

One of the most difficult issues people with epilepsy struggle with is the loss of control over their lives and actions that seizures represent. Many patients look for therapies that would give them a greater sense of personal control over the disorder and its treatment. In recent years, techniques such as behavioral therapy, relaxation therapy, and aromatherapy have gained increasing attention. While individual patients may report benefits from these techniques, their effectiveness has not been established through scientific study. They should therefore not take the place of medication, nor should they be undertaken without the knowledge of the physician.

These approaches usually are focused on reducing seizures or improving an individuals sense of well-being and personal adjustment to the condition. For example, since stress is cited by patients as the most common cause of seizures, behavioral strategies may be used to reduce stress.

National and Community ResourcesThe Epilepsy FoundationLocal affiliates, NY ChapterWebsite: www.epilepsyfoundation.orgMedicAlert FoundationSocial Security AdministrationAccreditation Council on Services for People with DisabilitiesUS Dept of EducationState Offices Vocational RehabilitationProtection and AdvocacyDivision of Developmental Disabilities

I hope this presentation has provided useful information about epilepsy. Before we go to the question session, Id like to discuss some of the resources that are available to help people with epilepsy and their families.

The Epilepsy Foundation is the national organization that works for people affected by seizures. The national office and a network of affiliated Epilepsy Foundations around the country support many programs, including support of research, community, patient and family education, advocacy, and services such as information and referral, public and professional education, employment assistance, and the Women and Epilepsy Initiative.

A variety of other resources are listed on the slide.

Services at Epilepsy CentersRoutine-EEGAmbulatory-EEG (up to 48 hours) Video-EEG Epilepsy Monitoring (few days)MRI/CTPET-CT ScansVagal Nerve StimulationPre-surgical Evaluation Epilepsy SurgeryNeuro-psychologySupport Groups

Thank You for your Attention

To understand epilepsy, it is important to review the difference between epilepsy and seizures. Epilepsy is a generic term used to define a variety of disorders characterized by recurring seizures. A diagnosis of epilepsy means that a person has an underlying condition, such as a brain injury, that affects the delicate systems which govern how electrical energy behaves in the brain, making it susceptible to recurring seizures.

A seizure is a brief, temporary disturbance in the electrical activity of the brain. Seizures are a symptom of epilepsy. However, having a seizure does not necessarily mean that a person has epilepsy. There are other causes of seizures, including high fever, kidney failure, or lack of oxygen.

Epilepsy is not contagious. You cannot catch epilepsy from someone else and nobody can catch it from you. Many misconceptions surround epilepsy, and sometimes people inadvertently add to the negative image of the disorder by choice of language. Like all individuals with a disability, persons with epilepsy dislike labels, such as hes an epileptic. Epilepsy is a condition that a person has, not what they are. The preferred terminology is person with epilepsy. In addition, epilepsy should be referred to as a disorder, since it is not a disease by definition. It is a disorder characterized by a recurring disturbance in the electrical activity of the brain. It may surprise you to know that 25 million Americans -- or about one in every ten people -- have had, or will have, a seizure at some point in their lives. You are not alone.

About 2.3 million Americans have epilepsy. In addition, roughly 181,000 new cases of seizures and epilepsy occur each year. Unfortunately, it is estimated that a large number of children and adults have undetected or untreated epilepsy.

Anyone can get epilepsy at any time; however, 50% of people with epilepsy develop seizures by the age of 25. Epilepsy is increasingly common among older people, which, as we will discuss in more detail later, is primarily related to an increase in cardiovascular disease, Alzheimers disease, stroke, and brain tumors. Now, there are as many people with epilepsy 60 years of age and older as children 10 years of age and under.

Question: How many people here know the cause of their epilepsy? If you know, can you share what it is?To understand how epilepsy arises, we must briefly outline how the brain functions normally. The brain consists of millions of nerve cells, or neurons, and their supporting structure. Each neuron can get electrical signals from other neurons and pass them on to others. All the functions of the brain, including feeling, seeing, thinking, and moving muscles depend on electrical signals being passed from one neuron to the next, the message being modified as required. The normal brain is constantly generating electrical signals in an orderly way.

In epilepsy, this order is disrupted by some neurons discharging signals inappropriately. There may be a brief electrical storm arising from neurons that are inherently unstable because of a genetic defect (as in the various types of inherited epilepsy), or from neurons made unstable by metabolic abnormalities such as low blood sugar or alcohol. Alternatively, the abnormal discharge may come from a localized area of the brain, as when epilepsy is caused by head injury or brain tumor.

A seizure is a massive disruption of the electrical communication between neurons. If enough neurons are involved, the discharge of electrical impulses will produce symptoms. The result could be any number of different sensations or behaviors such as sudden muscle jerk, an abrupt fall, or distorted vision. If the disturbance flashes across the whole brain at once, it could produce a convulsive seizure (convulsion), temporarily disrupting many functions of the brain.-Most people with epilepsy wonder what caused their disorder; yet in as many as 7 out of 10 people with epilepsy, no specific cause can be found. Among the rest, the cause may be any one of a number of things that can make a difference in the way the brain works.

Head trauma can occur for a number of reasons, including automobile accidents, gunshot wounds, sports accidents, or falls or blows. The more severe the injury, the greater the risk of developing epilepsy. Lead and alcohol are examples of poisons that can damage the brain. In fact, each year more than 5,000 people have a seizure caused by alcoholism. A number of serious infections and causes of inflammation can lead to brain injury, including meningitis, viral encephalitis, and lupus erythematosus. The brain of a fetus may not develop properly during pregnancy, or a lack of oxygen during birth may damage delicate electrical systems within the brain. Finally, heredity plays a role. People may inherit varying degrees of susceptibility to seizures. This is assumed to be more likely when no other specific cause of seizures can be identified. In seniors, epilepsy may be due to stroke, Alzheimers disease, or other head trauma.

Because the cause is unknown or irreversible in so many people with epilepsy, we need to keep in mind that the important thing is how to live well with a seizure disorder. We need to focus on how to best control the seizures and how to cope with the issues that having a seizure disorder creates.

Seizures may be convulsions, short periods of unconsciousness, distortion of the senses, or loss of control over movement. The kind of seizure a person has depends on where in his brain the abnormal electrical activity starts and where it spreads. There are two primary types of seizures: generalized seizures produced by electrical dysfunction throughout the brain, and partial seizures, in which only part of the brain is affected. Seizures are further classified by their appearance.

The ABSENCE seizure is a generalized seizure characterized by a brief loss of consciousness, which usually lasts no more than a few seconds. While its going on, the person is essentially absent. These seizures are frequently overlooked, often being mistaken for daydreaming. The GENERALIZED TONIC-CLONIC seizure (or grand mal) also involves the whole brain at once. This is what most people know as an epileptic seizure or convulsion. When these seizures start, the muscles contract simultaneously, becoming very rigid and the person may cry out as breath is forced out of the lungs when the diaphragm contracts. The person loses consciousness and will fall down if standing. Then, a rhythmic jerking of the head, legs, and arms may occur as massive signals from the brain stimulate the muscles to alternately tense and relax. Generalized means that it affects the whole brain.

The symptoms of a partial seizure relate to the normal function of the brain area that is involved. The person may experience involuntary movements or tingling, light flashes, or other symptoms. There are two forms of partial seizures, simple and complex. Simple partial seizures are generally brief and do not involve loss of consciousness. In contrast, complex partial seizures affect awareness. A person having this type of seizure will be unaware of his surroundings during the seizure, may wander aimlessly, run, do a series of repetitive movements, pick at clothes, chew, mumble and, to a casual onlooker, appear to be drunk, on drugs or even mentally ill. After the seizure ends, the person will have little or no memory of the actual seizure or what happened during it.

Epilepsy is classified by the seizure type as well as additional important information, including typical brain-wave recordings, clinical features such as behavior during the seizure, the expected course of the disorder, precipitating factors, expected response to treatment, and genetic features.

In addition, it is possible for a person with epilepsy to have more than one kind of seizure. The type of seizure depends on which part and how much of the brain is affected by the sudden electrical discharge. Partial seizures are the most common type of seizure experienced by people with epilepsy.

Seizures that begin early in life may change into different seizure types as the child grows older. If a family member or caretaker notes that a person with epilepsy is having new seizure patterns, they should alert the treating physician; this may help determine the most effective medication and provide a more accurate picture of how the condition will progress.Only a doctor can say for certain whether or not a person has epilepsy. But many people miss the more subtle signs of the condition and therefore also miss the opportunity for early diagnosis and treatment. Learning about epilepsy early and working to control seizures can often help to minimize the impact of the disorder.

The symptoms listed on the slide are not necessarily indicators of epilepsy and do not include all of the symptoms of seizures. These symptoms may be caused by some other, unrelated condition. However, if one or more is present, a medical checkup is recommended.

These symptoms include:

Periods of blackout or confused memoryOccasional fainting spells in which bladder or bowel control is lost, followed by extreme fatigueEpisodes of blank staring in children; brief periods when theres no response to questions or instructionsSudden falls in a child for no apparent reasonEpisodes of blinking or chewing at inappropriate timesA convulsion, with or without feverClusters of swift jerking movements in babies

Question: Have any of you identified activities or substances that seem to trigger your seizures?Now lets discuss how epilepsy is diagnosed. The doctors main tool in diagnosing epilepsy is a careful medical history with as much information as possible about what the seizures looked like and what happened just before they began. Because the effectiveness of several antiepilepsy drugs is specific to partial or generalized seizures, determining the seizure type is important information for the physician. A detailed description of what happened during the seizure is usually the most reliable indicator of whether a seizure is partial or generalized.

When doctors try to find out what caused a seizure, they look for chemical imbalances in the blood, infections, and any event in a persons medical history that could have injured the brain in some way. Information from each test and examination adds a piece of evidence to help the doctor solve the puzzle.

The doctors assessment will also probably include supporting tests, such as blood tests and other clinical tests, to be sure that the person has epileptic seizures and not some other type of episode such as fainting, breath-holding (in children), or low blood sugar.

Question: What are some of the things you think are important to tell your doctor about your seizures?Telling your doctor everything you can about your seizures will help him or her diagnose and treat them. It is important to tell the doctor about any seizures or side effects that have occurred since your last visit. A seizure record -- filled out by the patient or someone in the family -- can be extremely helpful, especially when seizures start or change patterns. It can be difficult to remember all the details a week or two after it happens, so we suggest you record observations as soon as possible. You can take the completed form to the doctor, and use it to help talk about the seizure.

Sometimes people hesitate to say theyre not feeling well, or that they have been having seizures. They dont want to disappoint the doctor. Or they may be afraid he or she will be angry that treatment is not working. But unless the doctor knows that seizures are occurring, he or she cant make the adjustments that might prevent them.

Or, it may be tempting to say youre seizure-free, thinking that only big seizures matter or that you wont be allowed to drive. But it is very important for the doctor to know about blackouts, auras, or little fragmentary seizures. This information may make a difference in the kind of medicine you take, or the dose, or in how safe it is for you to drive.Apart from the patient history and the neurologic exam, the electroencephalograph (EEG) is the most important tool in the diagnosis of seizures and epilepsy. It provides a record of ongoing electrical activity in the brain.

The EEG uses a machine to record brain waves picked up by tiny cup electrodes taped to the head. Electrical signals from brain cells are recorded as wavy lines by the machine. Brain waves during or between seizures may show special patterns which help the doctor decide whether or not someone has had a seizure. Excessive discharge of neurons may show up as a sharp spike or series of spikes. However, while the EEG is almost always abnormal during a seizure, it may be normal between seizures. A lack of EEG abnormalities between seizures does not exclude the diagnosis of epilepsy. In fact, as many as 40% of people with epilepsy have consistently normal EEGs.

Imaging methods such as CT (computerized tomography), MRI (magnetic resonance imaging), or PET (positron emission transmission) scans may be used to search for any growths, scars, or other physical conditions in the brain that may be causing the seizures.Over time, some people with epilepsy become aware of certain activities that appear to trigger their seizures -- avoiding these triggers may decrease the frequency of seizures.

The most common cause for a breakthrough seizure is missed medication. It is estimated that about half of the people taking medication for epilepsy dont take it as prescribed. Other possible triggers include stress/anxiety, exertion or fatigue or dehydration, lack of sleep, and hormonal cycles in women. Some individuals have photosensitive epilepsy. If so, flashing lights or alternating sun/shade may trigger seizures. Use of alcohol should be discussed with the physician and use of street drugs should be avoided. Even some over-the-counter medicines should be avoided when taking epilepsy medications, except under the advice of a physician.

Just as with the causes of epilepsy, triggers are often not known or not present. It is important that children and adults with epilepsy not be blamed for having a seizure. Nor should they be prevented from participating in a full range of activities unless they or their parents or their physician request an accommodation.

Question: Now Im going to focus on first aid for seizures. When you think of helping someone whos having a seizure, what is your first instinct?

MENTOR: Start video Seizure First Aid. Stop when VCR counter reaches 3:14.Epilepsy therapy is designed to prevent seizures through medical, surgical, or dietary measures, and to lessen the consequences of epilepsy and seizures. The primary goal of treatment is to help the person with epilepsy lead a full and productive life, with minimal effects from the disorder or its treatment.

When a person experiences a single seizure, or has a history of questionable events that may or may not have been seizures, the first issue is to determine what happened, the possible cause, and the future prognosis. Once this information is gathered, the next question is whether to treat the underlying condition -- if one has been identified and it is treatable -- or whether to treat the symptoms by prescribing an antiepileptic (or seizure-preventing) drug.

Prescribing one or more antiepileptic drugs to prevent seizures is currently the first choice of treatment for most forms of epilepsy.Current treatment methods can achieve full or partial control of seizures in about 80% of people with epilepsy. The four major forms of treatment include medication, surgery, diet, and vagus nerve stimulation.

Long-term anticonvulsant (or antiepileptic) drug therapy is the major form of treatment. More than 20 antiepileptic drugs are currently in use. Most people are treated with one of these drugs; however, some may require two or more for the best control of seizures.

Surgery may be tried when medicines fail. Most often, surgery is used when the brain tissue causing seizures is confined to a small area of the brain that can be safely removed without damaging personality or function.

Some people have good luck with the ketogenic diet, a special high-fat, restricted calorie diet. This may be tried in children who do not respond to standard medications.

Vagus nerve stimulation (VNS) may also be an option when seizures are hard to control. It involves implantation of a small battery in the chest wall which is linked by electrodes to a major nerve in the neck. The device is programmed to deliver small bursts of electrical energy into the brain via the vagus nerve.

Lifestyle modifications center around identifying factors that trigger seizures, and avoiding them to minimize the potential for seizure.

Since drug therapy is usually the first treatment used, lets start by talking about it. Different types of seizures and epilepsy syndromes have unique features, which may affect the choice of medication, since some drugs are more effective against specific seizures and syndromes. Achieving good control of seizures with drug treatment generally depends on choosing the right drug, minimizing the number of drugs prescribed, and educating the patient and family to encourage daily use as prescribed.

Other factors that can affect the choice of drug include potential side effects, the dosing regimen -- whether it is simple or difficult to follow -- the age of the patient, childbearing potential, use of other medications, lifestyle, and, in some cases, cost.

Whenever possible, using one drug is preferred. This drug may be prescribed in increasing doses until seizures are controlled or a side effect occurs. If the drug is not effective, or if side effects are hard to live with, this drug will probably be gradually stopped while another one is slowly introduced.

Question: How many of you had to try more than one drug before finding one that effectively reduced your seizures? What was the most common reason for changing the medication?In general, antiepileptic drugs eliminate seizures for about half of all patients with epilepsy; for another 20-30%, the intensity and number of seizures is reduced to the point where the person can live and work normally. The seizures in the remaining 20% of people with epilepsy do not respond to current medications, and their condition is termed refractory to treatment. Some benefit from other treatment options, such as surgery, vagus nerve stimulation, or the ketogenic diet.

Whether or not a person is taking medication regularly as prescribed, is one of the biggest factors that influences response to drug treatment. Taking medications regularly and exactly as the doctor prescribed iis a challenge for people with many kinds of long term illnesses. In fact, some estimates suggest that up to 50% of people dont take their medicine as directed. However, it is particularly important in epilepsy treatment because of the risk of seizures if the level of drug in the bloodstream falls too low. Things that help people take meds consistently include pill reminder boxes, calendars, and watches with beeper alarms. Some doctors also monitor blood levels of the drug from time to time to encourage their patients to remember their meds, since a low level would suggest that not enough medication is being taken.

Other factors that can influence an individuals response include how the drug is metabolized or digested within the body, and illness.

Question: Have you discussed potential side effects with your treatment team?Like many drugs, epilepsy medicines have side effects. Some are dose-related: the higher the dose, the more likely the effect. Sedation, slurring of speech, and unsteadiness are common effects of antiepileptic drugs at high doses. Similar effects may occur at standard doses at the beginning of treatment, and then slowly go away as the body gets used to the drug.

Other side effects are associated with specific medications and occur fairly frequently, regardless of the dose. The most common side effects associated with epilepsy medicines are: drowsiness, irritability, nausea, rash, and clumsiness. Some drugs produce changes in emotions, memory or behavior, or affect learning.

Persons taking antiepilepsy drugs should be aware of the individual side effect profiles, and report changes in health, behavior, or mood to their physician. Instances of prolonged fever, rashes, severe sore throat, mouth ulcers, easy bruising or pinpoint bleeding under the skin, weakness, fatigue, swollen glands, or lack of appetite may be signs that serious problems are developing and should be reported to the doctor at once.

Question: What do you tell your doctor when you experience something you think is a medication side effect?

When antiepileptic drugs fail to control or substantially reduce seizures, surgery on the brain may be considered. Although some of the techniques are recent, surgical removal of seizure-producing areas of the brain has been an accepted form of treatment for more than 50 years. Most surgical patients are adults who have fought long and unsuccessful battles for seizure control. However, children with severe seizures are also being treated with surgery.

Brain surgery for epilepsy involves either 1) removal of tissue from the area where seizures arise or 2) interruption of nerve pathways along which seizure impulses spread.

In trying to decide whether to use surgery, doctors consider whether the problem is really epilepsy, and whether the type of seizure can potentially be helped by an operation. Surgery is limited to certain types of seizures. Doctors will also want to know what efforts have been made in the past to control seizures, including drug treatments and diet. Finally, they try to weigh whether the condition might get better or worse with surgery, and assess the potential benefits to the person versus the potential risks. It is reported that surgery is successful in many patients, although the success depends on many factors.Other treatments that are useful for some people with epilepsy include vagus nerve stimulation and the ketogenic diet. Vagus nerve stimulation is a relatively new procedure. It involves implanting an electronic device in the upper chest to control seizures by delivering electrical stimulation to the vagus nerve in the neck. It has been approved by the US Food and Drug Administration for use in treating partial seizures in adults and adolescents over 12 after medical therapy has failed to control the seizures.

Once implanted, the device delivers a regular pattern of stimulation. Persons can turn the device on if they feel a seizure coming on by use of a special magnet, which in some cases may prevent the seizures.

Medical studies of the device suggest that some patients will gain some benefit from the device although complete seizure control is rare. Most people continue to take antiepileptic drugs while receiving vagus nerve stimulation. The most commonly reported side effects are hoarseness, coughing and breathlessness. The ketogenic diet is not a drug; however, it helps the body to make substances that have an antiepileptic effect. The diet is based on the observation that starvation, which burns fat for energy and produces ketones, has an antiepileptic effect. The goal of the diet is to make the body get its energy from fat and become ketotic. The diet is used primarily to treat severe childhood epilepsy.

Persons who follow the diet are instructed to eat foods high in fat and low in carbohydrate and protein. Usually, the diet is started in the hospital so that physicians may monitor the progress. The exact reasons why the diet works remain unclear. Medical studies suggest that about one-third of patients are substantially helped, another third have some reduction in seizure, and one third have no change.

Children may be kept on the diet for months or years. There are side effects, but not all children experience them. Like antiepileptic drugs, the ketogenic diet should be tapered rather than stopping abruptly. A great deal of care must be taken when the diet is used in children taking medications, since these may contain sugar to make them more palatable to the child. Parent and family education and a strong family commitment to the diet, plus administration by a doctor and dietician trained in its use, are generally considered vital to success.

People with epilepsy should not fast in the hope that it will help their seizure; in fact, fasting may trigger seizures. The keto diet is serious medicine, with its own set of side effects, and should never be tried without medical advice.This graphic shows general measures to assist a person who is having a seizure. First, stay calm and reassure other people. Track how long the seizure lasts. Protect the person by helping them avoid hazards. Place something soft under the head (a coat, T-shirt or similarly appropriate item thats handy); if the person is wearing glasses, remove them. Loosen any clothing that is tight-fitting around the neck. With a generalized tonic-clonic seizure, turn the person on one side to keep the airway clear.

Check for an epilepsy or seizure disorder ID, and wait for the seizure to end. Understand that verbal instructions may not be obeyed. Finally, stay until the person is fully aware and help reorient them to their surroundings.

Call an ambulance if the seizure lasts more than 5 minutes, unless you know that the persons seizures typically last longer than 5 minutes. Remember, unless you are a primary caregiver who has been trained in use of a special medication, or you have been shown how to use a special VNS magnet, there is NOTHING you can do to stop a seizure -- it will run its own course. You CAN protect the person from injury, observe the seizure, call for an ambulance if necessary, and reassure others that this is just a seizure and everything will be just fine in a few moments.

NOTE: If asked, the medication is diazepam rectal gel (Diastat) or a liquid form of diazepam for rectal administration. It is for family/caregiver/nurse use only, not a casual first aid.

Question: Sometimes things we do with good intentions can actually be dangerous to the person having a seizure. Can you think of things that may be harmful?There are several common responses to a generalized tonic-clonic seizure that may be extremely harmful to the person experiencing a seizure.

Do not put anything in the persons mouth. One of the most common myths about providing first aid to persons experiencing seizures is that you must put something in their mouths to prevent them from swallowing their tongues. In fact, this is one of the most harmful, unnecessary responses to a tonic-clonic seizure. The persons tongue is attached and cannot be swallowed. Any object placed in the mouth could do serious harm -- such as breaking teeth or jaw. Even worse, the object may block the persons airway.

Do not attempt to give the person antiseizure medication by mouth, and do not give food or drink until the person is fully aware. Finally, do not hold down or restrain movement. During a seizure the brain is sending instructions to various parts of the body. Even if that part of the body is restrained, for instance an arm or leg, it will still follow the instruction(s) received from the brain. Outside restraint could thus lead to sprained or torn muscles or even a broken bone. Finally, do not keep the person on his back, facing up throughout the convulsion. This may increase the risk that the person will inhale (aspirate) gastric fluids and suffocate.Call for an ambulance when:A convulsive seizure occurs in a person not known to have seizures, orA convulsive seizure lasts more than 5 minutes, orA complex partial seizure lasts more than 5 minutes BEYOND its usual duration for the individual, orAnother seizure begins before the person regains consciousnessAlso call if the person:Is injuredIs pregnantHas diabetes or other medical conditionRecovers slowlyDoes not resume normal breathing. If a person is not breathing following a seizure, rescue breathing should be begun.

MENTOR: Restart video Seizure First Aid and play through the end.Question: What do you find is the biggest effect of epilepsy in your life? In your familys lives?

Epilepsy can have a very real effect on the entire family of a person with the disorder. Changes that accompany a diagnosis may include restrictions on family activities or outings, and financial stresses due to hospitalization or need to purchase medications. Emotional changes are also common, including feelings of isolation from others and fear, anger, or embarrassment about the disorder. Siblings of a person with epilepsy may feel that they no longer get as much attention from their parents, or may feel excluded from important family matters.More than one million women and girls in the United States have epilepsy. While many issues they face are common to both sexes, women with epilepsy must deal with unique levels of uncertainty at various points in their reproductive lives.

For instance, hormonal changes in the balance between estrogen and progesterone in womens monthly menstrual cycles may affect seizure frequency. In addition, hormonal changes at puberty may affect seizure control, making it especially important for the family and doctor to provide support and information for growing girls.

Fertility is lowered among some women with epilepsy, possibly because of the higher risk for reproductive disorders, such as menstrual abnormalities or irregularities and polycystic ovary syndrome. Also, sexual dysfunction may occur in women or men with epilepsy, and may be due to epilepsy, its treatment, or the psychological impact of the disorder. Antiepileptic drugs can lower the effectiveness of birth control pills. Fortunately, this can usually be overcome by taking higher doses of birth control pills as directed by the physician.

There is an increase risk of birth defects in the children of women with epilepsy. Antiepileptic drugs and having seizures are believed to be the cause of the increase. In general, a woman working with her doctor and taking folic acid supplements before conception has the best chance of minimizing risks to the baby. All women, including those with epilepsy, should supplement their diet with folic acid prior to becoming and when pregnant. Finally, it is important for a woman with epilepsy to discuss antiepileptic medications with her physician when she is considering becoming pregnant -- do not stop them on your own.Recent studies show that epilepsy is actually increasing most rapidly in people older than 65 years, primarily due to diseases including Alzheimers disease, brain tumors, stroke, and head trauma.

Treatment of epilepsy in older people is similar to treatment in other age groups; however, there are distinct concerns in this group. Medication is typically metabolized more slowly in older people. A dose that can be taken without problems by a younger person may produce toxic effects in an older person. In addition, older people are often taking drugs to treat other conditions, increasing the potential for an adverse reaction between the different medications. In some cases, merely remembering when and how much medication to take -- particularly when the person must take several medications everyday-- can be difficult.

While many elderly people with seizures are able to maintain their independence and live normally, for others, the development of seizures is the final event that leads to loss of independence and placement in a nursing home.About 1% of the general population develops epilepsy. However, individuals with certain medical conditions are at higher risk. It is estimated that epilepsy can be expected to develop in:* 10% of children with mental retardation or autism* 1 in 3 children with cerebral palsy* 50% of children with both cerebral palsy and mental retardation* 10% of patients with Alzheimers disease* 22% of patients who have had a stroke

The early childhood years are full of changes as your child grows up physically, socially, and emotionally. Parents of a child with epilepsy face a balancing act between encouraging the normal stages of development to take place and handling the special circumstances that epilepsy especially hard to control epilepsy - may create. The goal is to try as much as possible to keep epilepsy as one part of your childs life, and not let it define who your child is or is to become.

Basic parenting skills -- such as showing affection, providing security and safety, discipline, and communication are just as important when a child has epilepsy as they are for any child.

Childcare, babysitters, and respite care are all important concerns for parents of young children with epilepsy. Also, remember that interacting with non-family members can be beneficial for your child -- it can help him or her gain self-confidence and independence.

Early childhood intervention services are available through a federal program and are designed to help developmentally delayed children from birth to age 3 years. The goal is to help children achieve the best development possible. You can access these services through your childs physician.The diagnosis of epilepsy carries with it many feelings, ranging from fear and guilt to anger and depression. These feelings and concerns are shared by most families who live with a person with epilepsy. Its important to acknowledge those feelings, and talking with others who have similar experiences can be very helpful.

Family relationships are also a concern for people with epilepsy. Even though your child is the person who has seizures, other family members have to deal with the changes created by epilepsy. They may, without realizing it, treat your child differently. Research shows that a good self-concept for a child with epilepsy is more a result of family interactions than seizure control. Trying to keep your focus on how the whole family is handling this disorder, and getting some help to handle stress or problems if you feel you need it can help family adjustment.

As a child grows, parents find themselves performing a balancing act between allowing the childs freedom and providing a safe, secure environment. A childs level of seizure control will obviously affect how those choices are made. In general, children with epilepsy should be able to do everything that other kids do, within the limits of their individual abilities. Help on safety issues, as well as school, childcare, and development issues is available through the Epilepsy Foundation and other community resources. Teens and young adults with epilepsy must deal with normal coming-of-age issues as well as special concerns about epilepsy. Most probably have a lot of questions. For example, what kind of plans can they make for jobs, college, getting married, and even driving? It can be hard for these young people to find someone to talk to.

The Epilepsy Foundation provides informational materials, as well as a toll-free telephone number where teens can ask questions and get straight answers. In addition, the Epilepsy Foundation website includes several chat rooms specifically for teens to interact. Areas that can be addressed include taking charge of epilepsy, dealing with feelings, friends and social pressures, and school issues, among others. In addition, the local Epilepsy Foundation can help you get information about driving regulations in your state.One of the most difficult issues people with epilepsy struggle with is the loss of control over their lives and actions that seizures represent. Many patients look for therapies that would give them a greater sense of personal control over the disorder and its treatment. In recent years, techniques such as behavioral therapy, relaxation therapy, and aromatherapy have gained increasing attention. While individual patients may report benefits from these techniques, their effectiveness has not been established through scientific study. They should therefore not take the place of medication, nor should they be undertaken without the knowledge of the physician.

These approaches usually are focused on reducing seizures or improving an individuals sense of well-being and personal adjustment to the condition. For example, since stress is cited by patients as the most common cause of seizures, behavioral strategies may be used to reduce stress.I hope this presentation has provided useful information about epilepsy. Before we go to the question session, Id like to discuss some of the resources that are available to help people with epilepsy and their families.

The Epilepsy Foundation is the national organization that works for people affected by seizures. The national office and a network of affiliated Epilepsy Foundations around the country support many programs, including support of research, community, patient and family education, advocacy, and services such as information and referral, public and professional education, employment assistance, and the Women and Epilepsy Initiative.

A variety of other resources are listed on the slide.