Living with Epilepsy

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Living with Epilepsy Information & Insights

Understanding Epilepsy....................................4 What Is Epilepsy?.............................................................4 What Causes Epilepsy?...................................................8 How Is Epilepsy Diagnosed?..........................................10

Types of Seizures.................................................13 Seizure Types and Symptoms.......................................13 Generalized Seizures.....................................................16 Partial Seizures................................................................17

Treatment for Epilepsy.......................................18 Medicines.....................................................................18 Surgery..........................................................................19 Diet Therapy....................................................................20

Medicine Adherence & Seizure Prevention.......22 The Importance of Taking Medicine as Prescribed.......22 Talking With Your Healthcare Provider.......................24 Seizure Prevention...........................................................27 Adherence Considerations for Children.....................28 Epilepsy and Pregnancy................................................30

What to Do When a Seizure Occurs...................32 When to Seek Emergency Medical Care....................35

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Understanding Epilepsy What Is Epilepsy? Epilepsy is a disorder of the brain that causes recurring seizures.

Epilepsy is one of the oldest-known medical conditions. A lot of old myths about epilepsy linger. Reassuring the important people in your life that epilepsy is a common condition may help ease their fears.

Seizures are common.

FAST FACTS In most new cases of epilepsy, a cause is not known. The rate of epilepsy increases with age. About 1 person in 10 may experience a seizure in his or her lifetime.

However, when seizures happen two or more times with no other obvious cause, your doctor may diagnose epilepsy.

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Most people treated for epilepsy are considered to be in remission, achieved after 5 or more years without a seizure.

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Understanding Epilepsy

Epilepsy by the Numbers

Roughly 1 in 26 people develop epilepsy at some point during their lives.

About 200,000 new cases of epilepsy are diagnosed each year.

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About 300,000 people each year have a seizure for the first time.

Around 2 to 4 million people in the United States, and up to 50 million people worldwide, have epilepsy.

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Understanding Epilepsy

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For people with epilepsy, some seizures can be triggered by:

What Causes Epilepsy? The brain is made up of billions of nerve cells that “talk” with each other using tiny electrical signals. A seizure happens when the electrical system of the brain doesn’t work the way it’s supposed to, leading to too much electrical activity. This can cause changes in a person’s sensations, behavior, or awareness that can last several seconds to several minutes.

Flashing lights

Physical or emotional stress

Loud music

Other conditions, including fever, lack of sleep, and hormonal changes (such as the premenstrual period for women), can also make a person with epilepsy more likely to have a seizure. Some people with epilepsy have no special seizure triggers at all.

The exact causes of epileptic seizures vary from one person to another. For many people, a cause may never be found.

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Be sure to tell your doctor about all events that happen before a seizure.

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Understanding Epilepsy

Any seizure is a cause for concern.

When a person has a seizure for the first time, doctors review his or her medical history. They also perform exams on the body and the brain, and usually order laboratory tests. Doctors use this information to see if there were earlier events that may have been a seizure, or if there are risk factors that can be changed to prevent future seizures.

However, having a single seizure does not mean that a person has epilepsy. Doctors consider the history and nature of a person’s seizures in diagnosing epilepsy.

Some questions your doctor may ask about your seizures to find out if they are caused by epilepsy are shown below. Your doctor may also ask these questions during follow-up care visits.

? How Is Epilepsy Diagnosed?

Were there any possible events that may have caused the seizure?

How long did the seizure last? 10

What happened during the seizure?

What was the first sign that you may have been having a seizure?

How did the seizure end— slowly or very quickly?

Does anyone in your family have seizures?

How did you feel after the seizure— were there any problems afterwards (confusion, muscle aches, bitten tongue)? 11

Understanding Epilepsy

Your doctor may order a test called an electroencephalogram (or EEG).

Types of Seizures Some people with epilepsy may only have a seizure once every few months. For others, seizures may happen several times a week, or several times a day.

An EEG records electrical activity in the brain. The results of the EEG test can help find brain activity patterns that are typically seen in epilepsy. An EEG test performed during a seizure can also help identify the type of seizure. Your doctor may also order other types of tests, such as computed tomography (CT scan) or magnetic resonance imaging (MRI), to look for any physical changes in the brain that may have caused a seizure. Blood tests and laboratory tests are also used to check for other medical conditions that may have caused a seizure. 12

Doctors have identified many different types of seizures. These seizure types can be broadly divided into two main kinds: generalized seizures and partial seizures. Generalized seizures happen when a large part of the brain, or the whole brain, produces too much electrical activity. Partial seizures only affect part of the brain. People with epilepsy may have a single type of seizures, or they may have two or more different types. Some people with epilepsy may have partial seizures that spread over time to become generalized. 13

Types of Seizures

Seizure Types & Symptoms Tonic–clonic

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Types of Seizures Generalized seizures affect both sides of the brain from the beginning of the seizure, and are generally associated with loss of awareness. Tonic–clonic seizures (also called grand mal seizures or convulsions) are the most common and best-known type of generalized seizures.The muscles of the arms and legs at first are tense or stiff (tonic phase), followed by a jerking of the arms, legs, and face (clonic phase). Breathing may stop during the tonic phase, but generally starts again during the clonic phase. Absence seizures (also called petit mal seizures) are more common in children, and associated with loss of awareness that begins and ends suddenly, and usually lasts only a few seconds. Sometimes there is also brief jerking of the eyelids or muscles in the face.

DID YOU KNOW? Daydreaming can be interrupted by calling a person’s name or with a light touch. An absence seizure is different. It can not be interrupted that way.

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Atonic seizures (also called drop attacks) cause a sudden loss of muscle tone in the head or in the whole body. Because these seizures are sudden and often cause people to fall with force, atonic seizures can result in injury to the head and face. Myoclonic seizures cause a sudden, uncontrolled muscle jerk. Sometimes the muscle movement affects only one part of the body. Other times it can be strong enough to throw a person to the floor.

Partial seizures affect only part of the brain and usually do not include the major convulsions seen with generalized seizures. Partial seizures usually don’t last long and end on their own. Simple partial seizures usually last only last 30 to 60 seconds Complex partial seizures can last 1 or 2 minutes, and can start with a sensation in the stomach (called an aura), or with lip smacking or picking at the clothes (called automatisms)

Knowing which seizure type(s) a person has plays an important part in the selection of an effective treatment option. 17

Treatment for Epilepsy Most people with epilepsy can be greatly helped with modern treatment. Medicines Medicines can be used to prevent or reduce the number of seizures caused by epilepsy. Medicines can also help reduce the effects of the seizures. Your doctor will consider a number of factors, including the type of seizures you have and possible side effects of the medicines, to find the right medicine for you. Remember, finding the right medicine can take time. If possible, doctors try to treat a person’s seizures with a single medicine, but sometimes they prescribe more than one. Always tell your doctor about any side effects you have. 18

Regular blood testing may be needed to make sure your body has the right amount of medicine to treat your epilepsy. Be sure to take your medicine exactly as your doctor tells you to. Some people with epilepsy may be able to stop taking medicine after several years of being seizurefree. Don’t stop taking any medicine unless your doctor tells you to. While medicines usually can help control seizures in most people with epilepsy, in some cases doctors may also consider surgery or diet therapy.

Surgery In the most common type of surgery, a small part of the brain where the seizures begin is removed. Another type of surgery is used to stop extra electrical activity from spreading to other parts of the brain. Some people that have surgery also continue to take medicine. 19

Treatment for Epilepsy

In another type of surgery, a small device called a vagus nerve stimulator (VNS) is placed under the skin on the chest. The VNS device delivers an electrical current to a specific nerve going into the brain to help reduce the number of seizures a person has. People with epilepsy who have this type of surgery usually also take medicine.

Diet Therapy Sometimes diet therapy is suggested for people with seizures who do not respond to medicines or who have certain types of epilepsy. For example, a reduced-calorie diet that is very low in carbohydrates and protein but high in fat has been shown to be effective in children. This is called a ketogenic diet. Ask your doctor for more information about the ketogenic diet. Do not try any diet therapy without asking your doctor. 20

When Seizures Still Occur Although treatment is usually effective, some people with epilepsy will still have seizures. Remember that there are many options to treat epilepsy, and some people will need to try several medicines before finding the best one. Doctors might also change a person’s treatment if it stops working. Work together with your doctor to find the best treatment option for you. Review your treatment plan regularly with your doctor to make sure it’s still the best option for you. Remember: Counseling is an important part of any treatment plan. Several types of counseling can help a person with epilepsy manage the different aspects of living with the condition. Ask your doctor for information about counseling services in your area. 21

Medicine Adherence & Seizure Prevention The Importance of Taking Medicine as Prescribed Taking the right amount of medicine at the right time is called medicine adherence. Poor medicine adherence can increase your risk of having seizures. You can improve your adherence with medicines prescribed for your epilepsy by: t

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Use daily reminder tools to help you remember to take your medicine, such as daily pill boxes or calendars, and electronic reminders. A simple dosing schedule can help improve your adherence. t

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If you have trouble remembering to take your medicine, talk with your doctor about medicines that can be taken in fewer doses — sometimes just once a day.

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Seizure Prevention

Talking with Your Healthcare Provider Talk with your doctor about the type of seizures you have, what you can expect from treatment, and the care plan that is best for you. Ask your doctor exactly how to take your medicine—how often to take it and how much to take. Get ready for your doctor visit by preparing a list of questions beforehand. Some questions you can discuss to help you with medicine adherence include: What can I expect from therapy? Will the medicine completely stop my seizures or just reduce how often the seizures happen?

How long will it take to control my seizures with medicine?

What should I do if I miss a dose of medicine? If you are taking more than one, the answer may be different for each medicine.

Which medicines are included in my prescription medicine insurance plan?

During treatment, your doctor may change the amount of medicine or prescribe a different medicine. Knowing this can help prevent you from getting discouraged with treatment. Ask for details about each medicine or other treatment in writing, for a handy reminder when you get home. Between doctor visits: Take your medicine exactly as your doctor tells you to—some of the medicines for epilepsy need to stay at a certain level in your body in order to work. Missing doses of medicine may cause you to have a seizure.

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You can use an online program such

Seizure Prevention

Keep a diary on how often you have seizures, any side effects from your medicine, mood changes, medicine doses, and reminders to take your medicine.

You can use an online program such as the My Epilepsy Diary, available at:

www.epilepsy.com

Seizure Prevention In addition to taking the medicines your doctor prescribes to help control your seizures, there are other steps you can take to reduce the risk of having a seizure: t

Eat a healthy diet and get plenty of rest. Lack of sleep can increase your physical stress and prompt a seizure t


Avoid triggers that you are aware of, such as flashing lights, loud music, or emotional stress

Keep all your appointments with your doctor to discuss how your medicine is working, and any side effects that are bothering you or not improving. If possible, ask a friend or family member to come with you to your appointments. They can help you remember details about your treatment.

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Ask your healthcare provider before taking any over-the-counter or nonprescription medicines, including herbal or natural products and vitamins. These kinds of products can prevent your epilepsy medicine from working correctly

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Seizure Prevention

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Adherence Considerations for Children For children and teens with epilepsy, adherence to treatment can be further affected by behavioral problems, their parents’ understanding of the condition, and their family environment. Some things that can help children take their medicine exactly as prescribed include: t

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Rewarding the child with something small (for example, stickers or small toys) for remembering to take his or her medicine

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DID YOU KNOW? The Epilepsy Foundation has resources and information on epilepsy for schools. Find out more at: www.epilepsyfoundation.org

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Seizure Prevention

Complications during pregnancy

Epilepsy and Pregnancy If you are a woman with epilepsy who is thinking about becoming pregnant, discuss with your doctor the effects of epilepsy and your medicine on a pregnancy. Seizure control before pregnancy Women who are seizure-free for an appropriate period of time before becoming pregnant have a high chance of remaining seizure-free during pregnancy. Therefore, it is important to talk with your doctor about making sure your epilepsy is well controlled before becoming pregnant.

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There are increased risks of complications related to pregnancy for women with epilepsy. If you are planning a pregnancy, talk with your doctor about these risks before becoming pregnant.

Some of the medicines used for epilepsy have been found to cause harm to the developing baby. Having seizures during pregnancy can also cause harm. So it is important to discuss with your doctor which medicines are best for you and your unborn child during pregnancy.

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What to Do When a Seizure Occurs Even with medicine, you may still have seizures. Your family and friends should know what to do in case you have a seizure. Always speak calmly and reassuringly to a person having a seizure. Never try to restrain someone having a seizure, but guide them from dangerous areas if they begin to wander. If the person is very agitated, keep a safe distance away but close enough to keep them from harm. Stay with the person until the seizure is over, and afterwards long enough to make sure they are fully alert and aware of what has happened.

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For seizures that are generalized—in which the person loses consciousness and falls, possibly with jerking of the arms or legs—more care may be needed: t

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What To Do When A Seizure Occurs

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Find information about first aid for seizures at the Epilepsy Foundation and the Centers for Disease Control and Prevention. Ask your doctor about other educational resources available to you and your family. www.epilepsyfoundation.org www.cdc.gov/epilepsy

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When to Seek Emergency Medical Care Although seizures often do not require emergency medical care, call 911 immediately if: t
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References Centers for Disease Control and Prevention. Epilepsy. First aid for seizures. http://www. cdc.gov/epilepsy/basics/first_aid.htm. Accessed December 15, 2012. The Epilepsy Foundation of America. 1 in 26. http://www.epilepsyfoundation.org/ livingwithepilepsy/educators/index.cfm. Accessed June 25, 2013. The Epilepsy Foundation of America. About epilepsy. http://www.epilepsyfoundation. org/aboutepilepsy/index.cfm. Accessed June 25, 2013. The Epilepsy Foundation of America. First aid. http://www.epilepsyfoundation.org/ aboutepilepsy/firstaid/index.cfm. Accessed June 25, 2013. The Epilepsy Foundation of America. Ketogenic diet. http://www.epilepsyfoundation.org/ aboutepilepsy/treatment/ketogenicdiet/index.cfm. Accessed June 25, 2013. The Epilepsy Foundation of America. Medications. http://www.epilepsyfoundation.org/ aboutepilepsy/treatment/medications/index.cfm. Accessed June 25, 2013. The Epilepsy Foundation of America. Partial seizures. http://www.epilepsyfoundation. org/aboutepilepsy/seizures/partialseizures/index.cfm. Accessed July 10, 2013. The Epilepsy Foundation of America. Primary generalized seizures. http://www.epilepsyfoundation.org/aboutepilepsy/seizures/genconvulsive/index.cfm. Accessed July 10, 2013. The Epilepsy Foundation of America. Seizure diaries. Epilepsy.com. http://www.epilepsy. com/epilepsy/using_seizure_diaries. Accessed June 25, 2013. The Epilepsy Foundation of America. Talking to your doctor. http://www.epilepsyfoundation.org/livingwithepilepsy/talkingtoyourdoctor.cfm. Accessed June 25, 2013. The Epilepsy Foundation of America. Treating Seizures. Landover, MD: The Epilepsy Foundation; 2003. The Epilepsy Foundation of America. Treatment. http://www.epilepsyfoundation.org/ aboutepilepsy/treatment/index.cfm. Accessed June 25, 2013. World Health Organizaton. Epilepsy. Fact Sheet. http://www.who.int/mediacentre/ factsheets/fs999/en/index.html. Accessed December 20, 2012.

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