Frequently asked questions about epilepsy

When it comes to word association, epilepsy and seizure go together like sleep apnea and snoring. But did you know there are different types of epilepsy and different types of seizure? And that’s just one of many frequently asked questions about epilepsy.


Frequently asked questions about epilepsy

1.       What is epilepsy?

Epilepsy is an umbrella term for a group of chronic brain disorders and syndromes that affect the central nervous system and cause seizures.

2.       Which are some examples of epilepsies and epilepsy syndrome?

·         West syndrome.

·         Doose syndrome.

·         Benign rolandic epilepsy.

·         Rasmussen's syndrome.

·         Lennox-Gastaut syndrome.

·         Landau-Kleffner syndrome.

·         Sturge-Weber syndrome.

·         Juvenile myoclonic epilepsy.

·         Idiopathic localization-related epilepsies

-        Frontal lobe epilepsy.

-        Temporal lobe epilepsy.

-        Parietal lobe epilepsy.

-        Occipital lobe epilepsy.

3.       What causes epilepsy?

In 2 out of every 3 cases, the cause of epilepsy cannot be identified, while in others it can be traced back to:

·         An infection called cysticercosis (the most common cause of epilepsy in the world).

·         Genetic factors and genetic disorders like autism.

·         Head trauma.

·         Brain conditions, including brain tumors.

·         Infectious diseases (meningitis, AIDS, viral encephalitis).

·         Prenatal injury.

·         Developmental disorders.

·         Stroke.

·         Central nervous system infection.

·         Loss of oxygen to the brain (for instance, during birth).

·         Other neurologic conditions like Alzheimer’s disease.

4.       What puts you at risk of developing epilepsy?

·         Age (it is more common in early childhood and after 60 years of age, but people of all ages can develop epilepsy).

·         Family history.

·         Vascular diseases such as stroke.

·         Dementia.

·         Brain infections.

·         Childhood seizures.

5.       Is epilepsy contagious?

Epilepsy is a non-communicable disease, which means that it is not contagious.

6.       Which complications can result from epilepsy?

·         During a seizure:

·         Falling.

·         Drowning.

·         Accidents while driving or operating machinery.

·         Pregnancy complications.

·         Long-term:

·         Depression, anxiety, and other psychological problems.

7.       What is a seizure?

It is a short disruption of the normal activity of the brain caused by excessive electrical discharges in a group of brain cells.

8.       Do seizures have warning signs?

Most seizures happen without a warning, though in some people they might be preceded by an aura (a funny feeling, an upset stomach, or a weird smell or taste right ).

9.       What are the symptoms of a seizure?

  • Temporary confusion.
  • Staring at nothing.
  • Uncontrollable jerking movements of the arms and legs.
  • Falling down.
  • Shaking.
  • Loss of consciousness or awareness.
  • Psychic symptoms.

10.   Are all seizures alike?

Seizures are divided in two categories. Focal or partial seizures affect only one part of the brain. Generalized seizures encompass both sides of the brain.

11.   What does a seizure look like?

This varies depending on the type of seizure. Some seizures look like staring spells, while others cause the person to collapse, fall to the ground, shake, and lose awareness of what’s going around him or her.

12.   What are the types and symptoms of focal seizures?

  • Simple focal seizures affect a small part of the brain and can cause twitching or jerking of an arm or leg; tingling, dizziness, flashing lights, and other sensory symptoms; or a change in sensation, for example a strange taste or smell, but do not result in loss of consciousness.
  • Complex focal seizures can render a person confused or dazed, unable to respond to questions or direction for up to a few minutes.
  • Secondary generalized seizures start as a focal seizure in one area of the brain and end up as a generalized seizure in both sides of the brain.

13.   What are the types and symptoms of generalized seizures?

  • Absence seizures, also known as petit mal seizures, can cause rapid blinking or a few seconds of staring into space.
  • Tonic-clonic seizures, also known as grand mal seizures, can make a person cry out, lose consciousness, fall to the ground, have muscle jerks or spasms, and feel tired after the seizure.
  • Atonic seizures, also called drop seizures, cause loss of muscle control which can lead the person to fall down or suddenly collapse.
  • Clonic seizures affect the neck, face, and arms, and can cause the muscles to jerk repeatedly or rhythmically.
  • Myoclonic seizures tend to manifest as sudden brief jerks or twitches of the arms and legs.

14.   How long does a seizure last?

A seizure may last from a few seconds to a few minutes.

15.   Is a seizure a medical emergency?

Not necessarily, but it depends on the duration. A seizure lasting longer than 5 minutes warrants a call to an emergency number – or if the seizure occurs in water, the person is injured during the seizure, is not breathing (or has difficulty breathing) or conscious afterward, has a second seizure immediately, has a high fever, experiences heat exhaustion, is pregnant, has diabetes, has heart disease, or has never had a seizure previously.   

16.   What should you do if a person has a seizure that lasts less than 5 minutes?

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

17.   Is there first aid for seizures without changes in awareness?

  • Remain calm and reassure the person that he or she is safe.
  • If the person is frightened or anxious, encourage them to take slow, deep breaths or do something calming or relaxing.
  • Stay with the person until the seizure ends. Make sure that they are fully aware of what is going on before you leave them.

18.   Is there first aid for seizures with altered awareness?

  • First of all, a person having a seizure may appear to be awake and even walk around, all the while not aware of what is going on or where they are going.
  • In addition to the above;
  • Help the person to a safe place.
  • Stay with the person and don’t let them wander away.
  • If possible, let them walk in an enclosed area.
  • Keep the person away from sharp objects or dangerous places.
  • If the person tries to run or is in a dangerous situation, call for help and hold them back if needed to keep them from harming themselves.
  • Do not assume that they can talk or hear you and follow directions.
  • Assure them they are safe and repeat instructions on what they should do next.
  • Make sure that they are alert, oriented and safe after the seizure and before they are left alone.

19.   Is there first aid for seizures with loss of consciousness?

  • Time the seizure and call for emergency medical attention if a generalized seizure lasts 5 minutes or longer.
  • Protect the person from injury without restraining their movements.
  • Watch their breathing – turn them on the side to help keep the airway open.
  • If there are breathing problems, call 911.
  • Don’t put things in their mouth.
  • Know when to call for emergency help.
  • Stay with the person after the seizure until they are alert and safe.

20.   Does having a seizure mean you are epileptic?

Seizures can occur due to reasons other than epilepsy, such as a high fever, low blood sugar, or alcohol and drug withdrawal. Up to 10% of people worldwide have one seizure during their lifetime.

21.   When is epilepsy diagnosed?

A person is diagnosed with epilepsy after they have had two or more seizures.

22.   How is epilepsy diagnosed?

·         Computerized tomography (CT) scan.

·         Magnetic resonance imaging (MRI).

·         Functional MRI (fMRI).

·         Positron emission tomography (PET).

·         Single-photon emission computerized tomography (SPECT).

·         Neuropsychological tests.

23.   What is the prognosis for epilepsy?

There is no cure for epilepsy, but some people can control seizures with medication, diet, devices, and/or surgery. Most seizures do not cause brain damage, though ongoing uncontrolled seizures may do so. It is not uncommon for people with epilepsy, in particular children, to develop behavioral and emotional problems together with seizures. Issues may also result from the social stigma attached to epilepsy, which can lead to embarrassment, frustration, bullying, teasing, or avoidance in school and other social settings. For many people with epilepsy, the risk of seizures restricts their independence and recreational activities.

24.   How is epilepsy treated?

·         Anti-seizure medications can controlled seizures in about 70% of people diagnosed with epilepsy.

·         Surgery to remove the single area of the brain – often the temporal lobe – that causes focal seizures.

·         A high fat, low carbohydrate diet with limited calories called ketogenic diet.

·         An electrical device is placed under the skin on the upper chest to send signals to a large nerve in the neck (vagus nerve stimulation). 

25.   How can epilepsy be prevented

·         Following a prenatal care plan with a healthcare provider to keep mother and baby healthy.

·         Preventing brain injuries.

·         Reducing the risk of stroke and heart disease.

·         Being updated on immunizations.

·         Washing hands and preparing food safely to prevent infections such as cysticercosis.

26.   How can epilepsy be managed?

·         Taking prescribed medications.

·         Approaching a doctor or a nurse with questions.

·         Identifying seizure triggers.

·         Keep a record of seizures.

·         Getting enough sleep.

·         Reducing stress.

·         Wearing a medical bracelet.

·         Learning about epilepsy and educating others on it.

·         Preserving as much independence as possible.

·         Joining a support group.

·         Visiting WebEase (Web Epilepsy, Awareness, Support and Education), a free online self-management program for epileptic adults. 

27.   How much does epilepsy cost?

The total indirect and direct cost of epilepsy in the U.S. alone is estimated at $15.5 billion yearly. 

28.   How common is epilepsy?

·         Approximately 5.1 million people in the U.S. have a history of epilepsy (having been told by a doctor that they had epilepsy or a seizure disorder).

·         Approximately 2.9 million people in the U.S. have active epilepsy (currently taking medication to control it, or having had one or more seizures in the past year, or both).

·         Approximately 50 million people worldwide have epilepsy.

29.   Do epileptic women have special concerns?

·         Hormonal changes can cause some women with epilepsy to have more seizures during their period.

·         There are special concerns about pregnancy as well, because having a seizure and taking certain drugs during pregnancy may increase the risk of harm to the baby.

·         Women with epilepsy who plan to get pregnant should talk with their healthcare team about how to best care for themselves and their babies.

·         Learn more about women and epilepsy and how to improve health on Women and Epilepsy.

30.   Can epilepsy kill you?

Seizure control and a healthy lifestyle can help people with epilepsy live full lives, but certain factors can increase the risk of early death, such as:

  • More serious health conditions like a stroke or a tumor.
  • Falls or other injuries that happen because of seizures.
  • Seizures lasting more than 5 minutes, which is a condition called status epilepticus that can sometimes occur when a person suddenly stops taking seizure medication.
  • Epileptic people can rarely experience sudden unexpected death in epilepsy (SUDEP).

31.   What is sudden unexpected death in epilepsy (SUDEP)?

This refers to deaths not caused by injury, drowning, or other known causes in people during or immediately following a seizure. According to some estimates, there are about 1.16 cases of SUDEP for every 1,000 people with epilepsy. 

32.   What causes SUDEP?

The precise causes are unknown, but the following factors are thought to contribute:

A seizure may cause pauses in breathing that can reduce the oxygen in the blood to a life-threatening level if they are too long. Additionally, during a convulsive seizure a person’s airway may get covered or obstructed, leading to suffocation.

A seizure may rarely cause a dangerous heart rhythm or even heart failure.

A combination of the above. 

33.   What are the risk factors for SUDEP?

  • Uncontrolled or frequent seizures.
  • Generalized convulsive seizures.
  • Seizures that begin at a young age.
  • Many years of living with epilepsy.
  • Missed doses of medicine.
  • Drinking alcohol.

34.   How can the risk of SUDEP be reduced?

  • Avoiding seizure triggers, if known.
  • Reading more about seizure triggers on the Epilepsy Foundation website.
  • Avoiding too much alcohol.
  • Learning how to improve seizure control with epilepsy self-management programs.
  • Getting enough sleep.
  • Training adults in the household in seizure first aid.

35.   What should you ask your doctor about SUDEP?

  • What is my risk for SUDEP?
  • What can I do to reduce my risk?
  • What should I do if I forget to take my anti-seizure drug?
  • Should we consider changing my current seizure medicine to better control my seizures? And if so, what medicine(s) might provide better seizure control?
  • Are there any specific activities I should avoid?
  • What instructions should I give my family and friends if I have a seizure?
  • Who can my family and I contact locally to receive information and training in seizure first aid?

36.   Can SUDEP occur in children?

Researchers have found that SUDEP is uncommon in younger aged children, but it is still an important concern for children with uncontrolled epilepsy or frequent seizures.

37.   What are the risk factors for SUDEP in children?

  • Early-onset of epilepsy.
  • Developmental disabilities.

38.   What should you ask your child’s doctor about SUDEP?

  • What risk does my child have for SUDEP?
  • What can I do to reduce his or her risk?
  • What should I do if my child forgets to take his or her anti-epileptic drug (AED)?
  • What steps should I take if it is decided to change my child’s seizure medicine?
  • What medicines provide the best seizure control for my child?
  • Are there any specific activities my child should avoid?
  • What instructions should I give family and friends if my child has a seizure?

39.   Should people with epilepsy drive a car?

·         Most states and DC do not issue driver's licenses to people with epilepsy unless they can provide documentation that they have not had a seizure for a specific amount of time – ranging from a few months to over a year, depending on the state.

·         Some states need a letter from a healthcare provider to issue a license when a person has seizures that don't distract the person from driving, occur only during sleep, and have warning signs that alert the person when they might happen.

40.   Can people with epilepsy exercise and play sports?

Regular exercise may improve seizure control, though it can seldom trigger seizures.

41.   What other conditions are common in people with epilepsy?

·         High blood pressure.

·         Pre-diabetes.

·         Obesity.

·         History of stroke.

·         Asthma.

·         Emphysema.

·         Bronchitis.

·         Migraine.

·         Arthritis and other pain.

42.   How can people with epilepsy do protect their health?

·         Getting recommended screenings and vaccinations.

·         Eating a healthy diet.

·         Exercising regularly.

·         Quitting smoking.

·         Managing epilepsy well.

43.   What can parents of children with epilepsy do?

·         Talk with the child's healthcare provider to make sure the child's seizures are controlled as much as possible.

·         Explore different treatment alternatives.

·         Learn more about how to help teens with epilepsy with CDC's You Are Not Alone toolkit.

·         Encourage the child's school nurse, school staff, or day care providers to become acquainted with epilepsy and first aid for seizures.



Related: 32 Tips for caring for someone with epilepsy