Epilepsy

How FINDcures Can Help

FINDcures specializes in providing help in areas that other foundations often miss or leave unaddressed.  When a family member is diagnosed with Epilepsy, a cascade of questions and concerns materialize that can easily overwhelm a family.  Most often the patient is a child and the issues of on-going therapy and parental education on how to be an effective caregiver will be need to be addressed.

Beyond the issues of therapy and parental caregiving there are other adjustments that need to be considered.  Specific concerns, that most often arise in a progression of unanswered questions, can have an overwhelming impact on a family’s sense of security and self-worth.  FINDcures has developed a service model (shown at right) called the “Perimeter of Hope” which is designed to provide solutions and answers to the myriad questions that arise when a neurological diagnosis occurs.

The most common questions that come up are these:

  1. Why is this happening?  What caused this?  How difficult is this going to be?  How will this impact my child and my family?  Who can we turn to when social stigmas become overwhelming?  How do I deal with all of the emotions I’m feeling?  (Mental Health & Well-Being Services)
  2. How will I be able to provide for my child in the future?  (Financial Planning & Retirement Services)
  3. How can I protect my assets so that they will be available as a resource for my family and my child when I’m unable to do so or when I die?  (Legal Assistance & Estate Planning Services)
  4. If our family needs to relocate to receive better care for my child or to reduce expenses who can I turn to for help?  (Housing, Relocation & Real Estate Services)
  5. Will I be able to help with my child’s education expenses in the future?  (Education Planning & Tuition Assistance)
  6. When will they find a cure?  What health steps can I take to help my child in the meantime?  (Medical Research & Information Services)

When an impacted individual or family is faced with making these decisions on their own and without help from qualified individuals familiar with the impact of neurological diseases, the task list can be overwhelming.  Why make things more difficult by going it alone when you can contact an experienced FINDcures representative and allow them to assist you?  Our services are free of charge.  The consultation costs you nothing and should you choose a service we offer, the cost, if any, is subsidized by the donations we receive.

Epilepsy – An Overview

Epilepsy is a spectrum of brain disorders characterized by the occurrence of seizures ranging from severe, life-threatening and disabling, to ones that are much more benign.[1][2]  Epileptic seizures are episodes that can vary from brief and nearly undetectable to long periods of vigorous shaking.[3]  These episodes can result in physical injuries including, occasionally, broken bones.[3]  In epilepsy, seizures tend to recur, and have no immediate underlying cause.[2]  Isolated seizures that are provoked by a specific cause such as a high fever or head injury does not necessarily mean that a person has epilepsy.[1][4]  People with epilepsy in some areas of the world experience stigma due to the condition.[3]

The cause of most cases of epilepsy is unknown, although some people develop epilepsy as the result of brain injury, stroke, brain tumors, infections of the brain, and birth defects.[3]  Known genetic mutations are directly linked to a small proportion of cases.[5][6]  Epileptic seizures are the result of excessive and abnormal nerve cell activity in the cortex of the brain.[4]  The diagnosis involves ruling out other conditions that might cause similar symptoms such as fainting and determining if another cause of seizures is present such as alcohol withdrawal or electrolyte problems.  This may be partly done by imaging the brain and performing blood tests.  Epilepsy can often be confirmed with an electroencephalogram (EEG), but a normal test does not rule out the condition.[5]

Epilepsy that occurs as a result of other issues may be preventable.[3]  Seizures are controllable with medication in about 70% of cases.[7]  Inexpensive options are often available.[3]  In those cases whose seizures do not respond to medication, then surgery, neurostimulation, or dietary changes may be considered.[8][9]  Not all cases of epilepsy are lifelong, and many people improve to the point that treatment is no longer needed.[3]

History of Epilepsy

The oldest medical records show that epilepsy has been affecting people at least since the beginning of recorded history.[10]  Throughout ancient history, the disease was thought to be a spiritual condition.[10]  The world’s oldest description of an epileptic seizure comes from a text in Akkadian (a language used in ancient Mesopotamia) and was written around 2000 BC.[11]  The person described in the text was diagnosed as being under the influence of a Moon god, and underwent an exorcism.[11]  Epileptic seizures are listed in ancient Mesopotamian law in the Code of Hammurabi (c. 1790 BC) as a reason for which a purchased slave may be returned for a refund,[11] and the Edwin Smith Papyrus (c. 1700 BC) describes cases of individuals with epileptic convulsions.[11]

The oldest known detailed record of the disease itself is in the Sakikku, a Babylonian cuneiform medical text from 1067–1046 BC.[10]  This text gives signs and symptoms, details treatment and likely outcomes,[11] and describes many features of the different seizure types.[10]  As the Babylonians had no biomedical understanding of the nature of disease, they attributed the seizures to possession by evil spirits and called for treating the condition through spiritual means.[10]  Around 900 BC, Punarvasu Atreva described epilepsy as loss of consciousness;[12] this definition was carried forward into the Ayurvedic text, written in Sanskrit, which contains a system of medicine with roots in the Indian subcontinent (about 400 BC).[15]

The ancient Greeks had contradictory views of the disease.  They thought of epilepsy as a form of spiritual possession, but also associated the condition with genius and the divine.  One of the names they gave to it was the “sacred disease”.[11][14]  Epilepsy appears within Greek mythology: it is associated with the Moon goddesses Selene and Artemis, who afflicted those who upset them.  The Greeks thought that important figures such as Julius Caesar and Hercules had the disease.[11]  The notable exception to this divine and spiritual view was that of the school of Hippocrates.  In the fifth century BC, Hippocrates rejected the idea that the disease was caused by spirits.  In his landmark work On the Sacred Disease, he proposed that epilepsy was not divine in origin and instead was a medically treatable problem originating in the brain.[11][10]  He accused those of attributing a sacred cause to the disease of spreading ignorance through a belief in superstitious magic.[11]  Hippocrates proposed that heredity was important as a cause, described worse outcomes if the disease presents at an early age, and made note of the physical characteristics as well as the social shame associated with it.[11]  Instead of referring to it as the sacred disease, he used the term great disease, giving rise to the modern term grand mal, used for tonic–clonic seizures.[11]  Despite his work detailing the physical origins of the disease, his view was not accepted at the time.[10]  Evil spirits continued to be blamed until at least the 17th century.[10]

In most cultures, persons with epilepsy have been stigmatized, shunned, or even imprisoned.  In the Salpetriere Hospital in Paris, France, the birthplace of modern neurology, Jean-Martin Charcot (1825 – 1893) found people with epilepsy side-by-side with the mentally ill, those with chronic syphilis, and the criminally insane.[15]  In Ancient Rome, epilepsy was known as the morbus comitialis (‘disease of the assembly hall’) and was seen as a curse from the gods.  In northern Italy, epilepsy was once traditionally known as Saint Valentine’s malady.

In the mid-1800s, the first effective anti-seizure medication, bromide, was introduced.  The first modern treatment, phenobarbital, was developed in 1912, with phenytoin coming into use in 1938.

Epilepsy by the Numbers

Epilepsy is one of the most common serious neurological disorders[16] affecting about 22 million people worldwide as of 2013.[17]  It affects 1% of the population by age 20 and 3% of the population by age 75.[18]  It is more common in males than females with the overall difference being small.[19][20]  Most of those with the disorder (80%) are in the developing world.[21]

Number of Americans With a History of Epilepsy[22]

  • According to the latest estimates, about 1.8% of adults aged 18 years or older have had a diagnosis of epilepsy or seizure disorder.[23] When applied to the 2013 population, that’s about 4.3 million American adults.[24]
  • About 1% of children aged 0-17 years have had a diagnosis of epilepsy or seizure disorder.[25] When applied to the 2013 population, that’s about 750,000 American children aged 0-17 years.[24]
  • When counting both children and adults, about 5.1 million people in the United States have had a diagnosis of epilepsy or a seizure disorder.[23][24][27]

Number of Americans With Active Epilepsy[26]

  • According to the latest estimates, about 1% of adults aged 18 years or older have active epilepsy.[23] When applied to the 2013 population, that equates to about 2.4 million American adults.[24]
  • About 0.6% of children aged 0-17 years have active epilepsy.[27] When applied to the 2013 population, that’s about 460,000 American children aged 0-17 years.[24]
  • When counting both children and adults, about 2.9 million people in the United States have active epilepsy.[23][24][27]

Impact of Epilepsy on the U.S. Economy

A study of the cost burden of epilepsy in the United States estimated a total annual cost of $12.5 billion per year, $10.8 billion in indirect costs (86.5 percent) and $1.7 billion in direct costs (13.5 percent).[28]  Overall, lifetime productivity is estimated to decline 34 percent for men and 25 percent for women. Estimates of indirect costs are significantly higher for people with refractory epilepsy.[28]

Impact of Epilepsy on the Family

Having epilepsy is about much more than having seizures.  People with epilepsy and their families typically face an array of challenges to daily living that vary with the severity and nature of the epilepsy disorder and that may change as the individual gets older.  The negative effects on quality of life can be severe and involve family and social relationships, academic achievement, and opportunities for employment, housing, limitations on driving a car, and the ability to function independently.[29]

The burden of seizures and epilepsy, particularly severe forms of epilepsy or disabling comorbidities, can be overwhelming for many individuals and their families.  The social and emotional toll of care (sometimes round-the-clock care) can place financial and emotional strains on marriages and families, altering roles, relationships, and lifestyles.  Family members may need to take extensive leave or unexpected days off work that can disrupt careers and drain family finances.[29]

The Emotional, Psychological and Social Impact of Epilepsy on the Family

Epilepsy in one family member can negatively affect the quality of life of the entire family.[30][31][32][33]  Epilepsy can be more disruptive to the family than many other chronic conditions because of its hidden, episodic, and unpredictable nature; potential for injury and death; frequency of comorbidities; and associated stigma.  Episodic chronic health conditions are considered among the most stressful for families, because even during periods of no symptoms, the family remains on alert in anticipation of problems.[34]  Concerns about the safety and possible death of the person with epilepsy can further increase the stress and anxiety experienced by families.  Comorbidities, such as depression and cognitive deficits, present additional demands on the family’s attention.  Finally, the stigma associated with epilepsy and the possible fears that people with epilepsy and their families associate with seizures in public can curtail social and leisure activities, increasing social isolation and further reducing quality of life.[31][35]

Impact of Epilepsy on Employment

Another area in which the quality of life of family members is affected is employment.  Parents reported that epilepsy had a negative effect on employment, with many parents missing work due to caregiving responsibilities.[32]  A survey of families from 16 countries[30] found that many parents needed to take time off from work because of epilepsy, and some parents gave up their jobs to care for their child.  A 12-month study of the impact of epilepsy on parents[36] found that 33 percent of mothers and 7 percent of fathers left their jobs temporarily.  One year later, all fathers were back at work; however, 16 percent of mothers were still not working.  In a study of caregivers of adolescents and adults, caregivers reported that the negative impact of epilepsy (e.g., emotional challenges) was a burden that affected and interfered with their ability to work and participate in other activities.  In that study, women were more likely to be caregivers and more likely to experience these burdens.[37]

Symptoms of Epilepsy[38]

The epilepsies are chronic neurological disorders in which clusters of nerve cells, or neurons, in the brain sometimes signal abnormally and cause seizures.  Neurons normally generate electrical and chemical signals that act on other neurons, glands, and muscles to produce human thoughts, feelings, and actions.  During a seizure, many neurons fire (signal) at the same time – as many as 500 times a second, much faster than normal.  This surge of excessive electrical activity happening at the same time causes involuntary movements, sensations, emotions, and behaviors and the temporary disturbance of normal neuronal activity may cause a loss of awareness.

Epilepsy can be considered a spectrum disorder because of its different causes, different seizure types, its ability to vary in severity and impact from person to person, and its range of co-existing conditions.  Some people may have convulsions (sudden onset of repetitive general contraction of muscles) and lose consciousness.  Others may simply stop what they are doing, have a brief lapse of awareness, and stare into space for a short period.  Some people have seizures very infrequently, while other people may experience hundreds of seizures each day.  There also are many different types of epilepsy, resulting from a variety of causes.  Recent adoption of the term “the epilepsies” underscores the diversity of types and causes.

In general, a person is not considered to have epilepsy until he or she has had two or more unprovoked seizures separated by at least 24 hours.  In contrast, a provoked seizure is one caused by a known precipitating factor such as a high fever, nervous system infections, acute traumatic brain injury, or fluctuations in blood sugar or electrolyte levels.

Seizures and symptoms may be manifested in the following ways:

  • Uncontrollable jerking movements of the arms and legs
  • Temporary moments of confusion
  • Staring spells
  • Loss of consciousness or awareness
  • Psychic symptoms

Symptoms vary depending on the type of seizure.  In most cases, a person with epilepsy will tend to have the same type of seizure each time, so the symptoms will be similar from episode to episode.  Doctors generally classify seizures as either focal or generalized, based on how the abnormal brain activity begins.  However, there are many different types of seizures in each of these categories. In fact, doctors have described more than 30 different types of seizures.

Focal seizures

Focal seizures originate in just one part of the brain.  About 60 percent of people with epilepsy have focal seizures.  These seizures are frequently described by the area of the brain in which they originate.  Many people are diagnosed with focal frontal lobe or medial temporal lobe seizures.

Focal seizures without loss of consciousness (simple partial seizures)

These seizures don’t cause a loss of consciousness.  The person may experience motor, sensory, or psychic feelings (for example, intense dejà vu or memories) or sensations that can take many forms.  The person may experience sudden and unexplainable feelings of joy, anger, sadness, or nausea.  He or she also may hear, smell, taste, see, or feel things that are not real and may have movements of just one part of the body, for example, just one hand.

Focal dyscognitive seizures (complex partial seizures) 

These seizures involve a change or loss of consciousness or awareness.  During this type of seizure the person has a change in consciousness, which can produce a dreamlike experience.  The person may display strange, repetitious behaviors such as blinks, twitches, mouth movements (often like chewing or swallowing, or even walking in a circle).  These repetitious movements are called automatisms.  More complicated actions, which may seem purposeful, can also occur involuntarily.  Individuals may also continue activities they started before the seizure began, such as washing dishes in a repetitive, unproductive fashion.  These seizures usually last just a minute or two.

Some people with focal seizures may experience auras – unusual sensations that warn of an impending seizure.  Auras are usually focal seizures without interruption of awareness (e.g., dejà vu, or an unusual abdominal sensation) but some people experience a true warning before an actual seizure.  An individual’s symptoms, and the progression of those symptoms, tend to be similar every time.  Other people with epilepsy report experiencing a prodrome, a feeling that a seizure is imminent lasting hours or days.

The symptoms of focal seizures can easily be confused with other disorders.  The strange behavior and sensations caused by focal seizures also can be mistaken for symptoms of narcolepsy, fainting, or even mental illness.  Several tests and careful monitoring may be needed to make the distinction between epilepsy and these other disorders.

When seizures appear to result from abnormal activity in just one area of your brain, they’re called focal (partial) seizures.  These seizures fall into two categories.

Generalized seizures

Generalized seizures are a result of abnormal neuronal activity that rapidly emerges on both sides of the brain.  These seizures may cause loss of consciousness, falls, or a muscle’s massive contractions.  The many kinds of generalized seizures include:

Absence seizures

Absence seizures, previously known as petit mal seizures, often occur in children and are characterized by staring into space or subtle body movements such as eye blinking or lip smacking.  These seizures may occur in clusters and cause a brief loss of awareness.

Tonic seizures

Tonic seizures cause stiffening of your muscles.  These seizures usually affect muscles in your back, arms and legs and may cause you to fall to the ground.

Clonic seizures

Clonic seizures are associated with repeated or rhythmic, jerking muscle movements.  These seizures usually affect the neck, face and arms.

Myoclonic seizures

Myoclonic seizures usually appear as sudden brief jerks or twitches of your arms and legs.

Atonic seizures

Atonic seizures, also known as drop seizures, cause a loss of muscle control, which may cause you to suddenly collapse or fall down.

Tonic-clonic seizures

Tonic-clonic seizures, previously known as grand mal seizures, are the most dramatic type of epileptic seizure and can cause an abrupt loss of consciousness, body stiffening and shaking, and sometimes loss of bladder control or biting your tongue.

Note: Not all seizures can be easily defined as either focal or generalized. Some people have seizures that begin as focal seizures but then spread to the entire brain.  Other people may have both types of seizures but with no clear pattern.

Some people recover immediately after a seizure, while others may take minutes to hours to feel as they did before the seizure.  During this time, they may feel tired, sleepy, weak, or confused.  Following focal seizures or seizures that started from a focus, there may be local symptoms related to the function of that focus.  Certain characteristics of the post-seizure (or post-ictal) state may help locate the region of the brain where the seizure occurred.  A classic example is called Todd’s paralysis, a temporary weakness in the part of the body that was affected depending on where in the brain the focal seizure occurred.  If the focus is in the temporal lobe, post-ictal symptoms may include language or behavioral disturbances, even psychosis.  After a seizure, some people may experience headache or pain in muscles that contracted.

Diagnosis and Testing

Accurately diagnosing epilepsy is challenging because clinicians rarely have the opportunity to observe seizures and there are many types of seizures and epilepsy syndromes with differing presentations.  A clinician typically diagnoses epilepsy based on the patient’s self-report or a fam­ily member’s report of seizures and the patient’s medical history.  This is complicated by the fact that a number of medical conditions that are not epilepsy can look like seizures.  Diagnostic tests can provide relevant information, usually starting with the electroencephalogram (EEG).  However, because the typical duration of an EEG is only 20 to 45 minutes, it is unlikely to coincide with an actual seizure.  Further, the initial EEG may not show evidence of seizures in approximately half of people with epilepsy.[39][40]  Con­tinuous video-EEG monitoring, which can last from hours to days and is usually conducted in a hospital setting, is often the only way to definitively diagnose the type of seizure and affected areas of the brain.

Advances in technology permit family members and other caregivers to record seizures as they occur.  A 2007 case study[41] described where the mother of a teenager with epilepsy was able to capture his seizure on a cell phone camera, which a doctor had not been able to diagnose due to seizure infrequency.  Similarly, the improved visualization of seizures through digital cameras with video capabilities and video monitoring in home settings may be particularly beneficial for individuals with infrequent seizures or with more than one type of seizure and for those who do not have easy access to epileptologists and epilepsy monitoring units.  Also, the recording of seizures using web-based tracking systems, diaries, or journals can help people with epilepsy and their families maintain records of seizure activity and evaluate patterns with their health care provider.[42]  The observation of seizure patterns can help identify a target for medication and lifestyle interventions to improve seizure management.

Additional tests that doctors most commonly use to determine whether a person has a form of epilepsy and, if so, what kind of seizures the person has include:

Blood tests

Your doctor will take samples of your blood to test for possible infections or other conditions that might explain your symptoms.  The test results might also identify potential causes for epilepsy.

Neurological examination

As with any doctor’s office visit, your doctor will want to complete a full health history.  They will want to understand when your symptoms began and what you have experienced.  This information can help your doctor determine what tests are needed and what types of treatments may help once a cause is found.

CT scan

A computed tomography (CT) scan takes cross-sectional pictures of your brain.  This allows doctors to see into each layer of your brain and find possible causes of seizures, including cysts, tumors, and bleeding.

MRI

Magnetic resonance imaging (MRI) takes a detailed picture of your brain.  Doctors can use the images created by an MRI to study very detailed areas of your brain and possibly find abnormalities that may be contributing to your seizures.

fMRI

A functional MRI (fMRI) lets your doctors see your brain in very close detail.  An fMRI allows doctors to see how blood flows through your brain.  This may help them understand what areas of the brain are involved during a seizure.

PET scan

A positron emission tomography (PET) scan uses small amounts of low-dose radioactive material to help doctors see your brain’s electrical activity.  The material is injected into a vein and a machine can then take pictures of the material once it has made its way to your brain.

Current Treatment Methods[43]

Seventy percent of people with epilepsy can find ease and relief from their symptoms with the most common forms of treatment.  Treatment might be as simple as taking an anti-epileptic medication.  Others may require more invasive treatments.  The most common treatments for epilepsy include:

Medication

Anti-epileptic medicines are very effective for most people.  It’s also possible you will be able to discontinue taking these medicines after a certain period of time.

There are a number of medications available. Phenytoin, carbamazepine, and valproate appear to be equally effective in both partial and generalized seizures.[44[[45]  Controlled release carbamazepine appears to work as well as immediate release carbamazepine, and may have fewer side effects.[46]  In the United Kingdom, carbamazepine or lamotrigine are recommended as first-line treatment for partial seizures, with levetiracetam and valproate as second-line due to issues of cost and side effects.[47]  Valproate is recommended first-line for generalized seizures with lamotrigine being second-line.[47]  In those with absence seizures, ethosuximide or valproate are recommended; valproate is particularly effective in myoclonic seizures and tonic or atonic seizures.[47]  If seizures are well-controlled on a particular treatment, it is not usually necessary to routinely check the medication levels in the blood.[47]

The least expensive anticonvulsant is phenobarbital at around $5 USD a year.[48]  The World Health Organization gives it a first-line recommendation in the developing world and it is commonly used there.[49][50]  Access however may be difficult as some countries label it as a controlled drug.[48]

Adverse effects from medications are reported in 10 to 90% of people, depending on how and from whom the data is collected.[51]  Most adverse effects are dose-related and mild.[51]  Some examples include mood changes, sleepiness, or an unsteadiness in gait.[51]  Certain medications have side effects that are not related to dose such as rashes, liver toxicity, or suppression of the bone marrow.[51]  Up to a quarter of people stop treatment due to adverse effects.[51]  Some medications are associated with birth defects when used in pregnancy.[47]  Many of the common used medications, such as valproate, phenytoin, carbamazepine, phenobarbitol, and gabapentin have been reported to cause increased risk of birth defects,[52] especially when used during the first trimester.[53]  Despite this, treatment is often continued once effective, because the risk of untreated epilepsy is believed to be greater than the risk of the medications.[53]  Among the antiepileptic medications, levetiracetam and lamotrigine seem to carry the lowest risk of causing birth defects.[52]

Slowly stopping medications may be reasonable in some people who do not have a seizure for two to four years; however, around a third of people have a recurrence, most often during the first six months.[47][54]  Stopping is possible in about 70% of children and 60% of adults.[21]

Surgery

In some cases, imaging tests can detect the area of the brain responsible for the seizure.[43]  If this area of the brain is very small and well defined, doctors may perform surgery to remove the portions of the brain that are responsible for the seizures.  If your seizures originate in a part of the brain that cannot be removed, your doctor may still be able to perform a procedure that can help prevent the seizures from spreading to other areas of the brain.

Vagus nerve stimulation

Doctors can implant a device under the skin of your chest.[43]  This device is connected to the vagus nerve in the neck.  The device sends electrical bursts through the nerve and into the brain.  These electrical pulses have been shown to reduce seizures by 20 to 40 percent.

Who treats epilepsy?

Many kinds of health providers treat people with epilepsy.  Primary care providers such as family physicians, pediatricians, and nurse practitioners, are often the first people to see a person with epilepsy who has new seizures.  These providers may make the diagnosis of epilepsy or they may talk with a neurologist or epileptologist.

A neurologist is a doctor who specializes in the brain and nervous system.  An epileptologist is a neurologist who specializes in epilepsy.  When problems occur such as seizures or medication side effects, the primary health provider may send the patient to a neurologist or epileptologists for specialized care.

People who have seizures that are difficult to control or who need advanced care for epilepsy may be referred to an epilepsy centers.  Epilepsy centers are staffed by providers who specialize in epilepsy care, such as:

  • Epileptologists and neurologists
  • Nurses
  • Psychologists
  • Technicians

Many epilepsy centers work with university hospitals and researchers.

How do I find an epilepsy specialist?

There are several ways you can find a neurologist or an epileptologist near you.  Your primary care or family provider can tell you about types of specialists.  The American Academy of Neurology  and the American Epilepsy Society provide a listing of its member neurologists and epilepsy specialists, including epileptologists.  The National Association of Epilepsy Centers also provides a list of its member centers, organized by state.

Epilepsy Self-Management

Sometimes we can prevent epilepsy.  These are some of the most common ways to reduce your risk of developing epilepsy:

  • Have a healthy pregnancy. Some problems during pregnancy and childbirth may lead to epilepsy.  Follow a prenatal care plan with your healthcare provider to keep you and your baby healthy.
  • Prevent brain injuries.
  • Lower the chances of stroke and heart disease.
  • Be up-to-date on your vaccinations.
  • Wash your hands and prepare food safely to prevent infections such as cysticercosis.

Read more about epilepsy prevention here: http://www.cdc.gov/epilepsy/preventing-epilepsy.htm.

What can you do to keep your seizures in check?

Self-management is what you do to take care of yourself.  You can learn how to manage your symptoms and have an active and full life.  Begin with these tips:

  • Take your medication as prescribed
  • Talk with your doctor or nurse when you have questions
  • Recognize seizure triggers (such as stress)
  • Keep a record of your seizures
  • Get enough sleep
  • Exercise safely
  • Lower stress
  • Keep in touch with friends and family members that can help you

WebEase (Web Epilepsy, Awareness, Support and Education) is a free online self-management program for adults with epilepsy.  WebEase helps you set goals and learn skills to better manage your epilepsy.

Epilepsy First Aid

When most people think of a seizure, they think of a generalized tonic-clonic seizure, also called a grand mal seizure.  In this type of seizure, the person may cry out, fall, shake or jerk, and become unaware of what’s going on around them.

Here are things you can do to help someone who is having tonic-clonic (grand mal) seizure:

Call 911 if:

  • The person has never had a seizure before.
  • The person has difficulty breathing or waking after the seizure.
  • The seizure lasts longer than 5 minutes.
  • The person has another seizure soon after the first one.
  • The person is hurt during the seizure.
  • The seizure happens in water.
  • The person has a health condition like diabetes, heart disease, or is pregnant.

Additional steps to take:

  • Ease the person to the floor.
  • Turn the person gently onto one side. This will help the person breathe.
  • Clear the area around the person of anything hard or sharp. This can prevent injury.
  • Put something soft and flat, like a folded jacket, under his or her head.
  • Remove eyeglasses.
  • Loosen ties or anything around the neck that may make it hard to breathe.
  • Time the seizure. Inform 911 if the seizure lasts longer than 5 minutes.
  • Keep the person safe until the seizure stops by itself.

First aid for any type of seizure

There are many types of seizures.  Most seizures end in a few minutes.  These are general steps to help someone who is having any type seizure:

  • Stay with the person until the seizure ends and he or she is fully awake. After it ends, help the person sit in a safe place.  Once they are alert and able to communicate, tell them what happened in very simple terms.
  • Comfort the person and speak calmly.
  • Check to see if the person is wearing a medical bracelet or other emergency information.
  • Keep yourself and other people calm.
  • Offer to call a taxi or another person to make sure the person gets home safely.

Knowing what NOT to do is important for keeping a person safe during or after a seizure.  Never do any of the following things:

  • Do not hold the person down or try to stop his or her movements.
  • Do not put anything in the person’s mouth. This can injure teeth or the jaw.  A person having a seizure cannon swallow his or her tongue.
  • Do not try to give mouth-to-mouth breaths (like CPR). People usually start breathing again on their own after a seizure.
  • Do not offer the person water or food until he or she is fully alert.

Health and Safety Concerns

Are there special concerns for women who have epilepsy?

Women who have epilepsy face special challenges.  Hormonal changes can cause some women with epilepsy to have more seizures during their period.

For women with epilepsy, there are also special concerns about pregnancy, because having a seizure and taking certain drugs during pregnancy may increase the risk of harm to the baby.  Women can take the following steps before and during pregnancy to lessen these risks.

  • If you are a woman with epilepsy who plans to get pregnant, talk with your health team about how to best care for yourself and your baby.
  • Learn more about issues facing women with epilepsy and how to improve their health by visiting the Epilepsy Foundation’s website here: Women and Epilepsy.

Can a person die from epilepsy?

Most people with epilepsy live a full life.  However, the risk of early death is higher for some.  We know that the best possible seizure control and living safely can reduce the risk of epilepsy-related death.

Factors that increase the risk of early death include:

  • More serious health problems, such as a stroke or a tumor. These conditions carry an increased risk of death and may cause seizures.
  • Falls or other injuries that happen because of seizures. These injuries can be life-threatening.
  • Seizures that last over 5 minutes. This is a condition called status epilepticus.  Status epilepticus can sometimes happen when a person suddenly stops taking seizure medication.

Rarely, people with epilepsy can experience sudden unexpected death in epilepsy (SUDEP).  SUDEP is not well understood and experts don’t know what causes it, but they suspect that it is sometimes due to a change in heart beats (rhythm) during a seizure.  Sudden death due to heart rhythm changes also happens in people who do not have seizures.

The risk of sudden death is larger for people with major uncontrolled seizures.

Read more information about SUDEP(http://www.cdc.gov/epilepsy/basics/sudep/index.htm.

If I have epilepsy, can I still drive a car?

Most states and the District of Columbia will not issue a driver’s license to someone with epilepsy unless that person provides documentation that he or she has not had a seizure for a specific amount of time.  The seizure-free period ranges from a few months to over a year, depending on the state.

Some states need a letter from your health provider to issue a license when a person has seizures that:

  • Don’t distract the person from driving.
  • Happen only during sleep. These are called nocturnal seizures.
  • Have warning signs that alert the person that a seizure might happen. Sometimes a person feels strange before a seizure.  This is called an aura.

Learn state-specific information about driving laws from the Epilepsy Foundation.

If I have epilepsy, can I exercise and play sports?

Sometimes people with epilepsy worry that exercise or sports may worsen their seizures.  Exercise is rarely a “trigger” for seizure activity.  In fact, regular exercise may improve seizure control.  Safely playing sports can also be great for your physical, mental, and emotional well-being.

It is always important to avoid sports-related injuries that can increase the risk of seizures.

Read more about safe physical activity for people with epilepsy on the Epilepsy Foundation website here: Safety with Exercise and Sports

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