About Epilepsies+Treatments

Seizure First Aid

The Simple Basic 5-S + 5 Minutes of Seizure First Aid
  • STOP to help, and start timing the seizure,
  • Turn the person on their SIDE,
  • Put something SOFT under their head,
  • STAY with them, and
  • Make sure they are SAFE

If seizure lasts >5 minutes, call 911.

First Aid for a Convulsive Seizure (Generalized Tonic Clonic Seizure or Grand Mal Seizure)
  • Stay calm and keep track of time.
  • Look for medical identification.
  • Protect from nearby hazards.
  • Loosen any tight clothing, like tie or collar.
  • Cushion head to protect from injury.
  • Turn on side to keep airway clear unless injury exists. Reassure as consciousness returns.
  • If single seizure lasted less than 5 minutes, ask if hospital evaluation wanted.
  • If multiple seizures, or if one seizure lasts longer than 5 minutes, call an ambulance.
  • Stay with person until he/she regains consciousness.
What NOT to do during a convulsive seizure
  • Do NOT put anything in a person’s mouth during a seizure. This could injure their jaw and gums or break their teeth.
  • Do NOT hold them down or restrain them.
  • Do NOT attempt to give them oral medication or anything to drink during a seizures.
  • Do NOT try to “shake the person out of it”.
Response to a Non-Convulsive Seizure (Complex Partial, Psychomotor, Temporal Lobe Seizure)
  • Speak calmly and reassuringly to person having the seizure and to others around.
  • Guide gently away from obvious hazards.
  • Stay with person until completely aware of environment.
  • Offer to help afterwards, including helping them to get home.
Response during an Absence or Myoclonic Seizure
  • No first aid is needed, but the timing and description should be noted and given to the parent or caregiver or school nurse. 
A seizure is an emergency if these things occur?
  • First time seizure (no known history of seizures).
  • Convulsive seizure lasts more than 5 minutes.
  • Person is having repeated seizures without regaining consciousness.
  • There has been a change in frequency or type of seizure activity.
  • Person is injured, has diabetes or is pregnant.
  • Normal breathing doesn’t resume after seizure ends
  • Seizure occurs in water.

Request a Seizure First-Aid Presentation 

Resource Center |  First Aid for Seizures

Basics for Newly Diagnosed

Learn to Perform Seizure First Aid

If you or someone you love has epilepsy, learn how to recognize the different types of seizures and learn the appropriate first aid response for their seizure type(s).

Diagnosis and Treatment

If you have had one or more seizures, a comprehensive medical evaluation is needed and that usually includes a detailed clinical history, a neurological exam, an electroencephalogram (EEG) recording of your brain waves, and a brain imaging scan. Sometimes a more specialized evaluation is needed. Note: A ‘normal’ EEG and/or MRI does not rule out a diagnosis of epilepsy.

Knowing the type of epilepsy should help guide selection of the best treatment(s) for your epilepsy. The range of best treatment options include anti-seizure medications, dietary therapies, various surgeries, medical devices and lifestyle modifications. 

Discuss and Partner with Your Doctor

As you learn more, you will be better able to participate on your own healthcare team and partner with your doctor.  Learn how to prepare for your clinic visits. 

1) Discuss with your doctor and decide the best treatment(s) for your epilepsy and you. Learn the side effects of treatment and what to do if they occur. Find your balance between no seizures and no side-effects.

2) Find out if switching your anti-seizure medication from a brand to generic or from one generic to another generic may affect your seizure control.

3) Learn about safety measures to help prevent seizures, reduce injury, improve safety, and reduce the risk of early death — while you continue to pursue seizure freedom with treatment. 

4) Develop a Seizure Action Plan that works for you and inform those around you about the plan. 

5) Use tips and tools as you take an ever more active role in preventing your seizures. Lifestyle choices, such as proper sleep, stress reduction, exercise, and treatment compliance can often make a big difference.

6) Actively pursue END EPILEPSY for you and your family and for the community at large. You can do this by educating yourself and those around you about your seizures/epilepsy, sharing your story to spread awareness, connecting with others, joining the END EPILEPSY Walk+Run, participating in research and living with HOPE.

Seizures

What are seizures?

Seizures are a symptom of epilepsy. There are more than 20 types of seizures that can differ greatly in appearance. Most seizures last from a few seconds to a few minutes.* They can appear differently — as convulsions or as loss of consciousness or as very subtle events that are not always recognized as seizures, such as blank staring, lip smacking, or brief jerking movements of arms and legs. 

A seizure is a temporary disturbance in the electrical activity of the brain which causes change in sensation, awareness and behavior. The abnormal electrical discharges are in brain cells known as neurons. Normally, neurons carrying electrical impulses form a network allowing communication between the brain and the rest of the body. Neurons “fire” electrical impulses toward surrounding cells and stimulate neighboring cells to fire.

In people with epilepsy, sometimes too many neurons fire at one time, causing what might be described as an “electrical storm” within the brain. That’s why you may sometimes hear people describe seizures like an “electrical storm” in the brain. 

What are the types of seizures?

There are more than 20 different types of seizures. It is possible for a person to experience more than one type. These types are organized into two categories, depending on which which part of the brain the seizure originates in and how much of the brain is affected by the electrical disturbance that produces seizures. Recognizing specific seizure types is very helpful in diagnosing, understanding, and treating epilepsy.

1) Generalized Onset: The seizure discharge starts in the entire brain at once. More likely to be of genetic origin and include generalized tonic-clonic or grand mal seizures, absence or petit mal seizures and myoclonic seizures. Tonic means stiffening. Clonic means jerking, myoclonic means single or repetitive jerks. 

Examples include: Absence seizures (also called petit mal), Atonic seizures (also called drop attacks), Myoclonic seizures, Tonic-clonic seizures (also called grand mal).

2) Partial or Focal Onset:  The seizure discharge starts in one area of brain and then spreads out over other areas. It is usually caused by focal brain damage from any cause. They are further divided into simple partial seizures in which there is no loss of consciousness and complex partial seizures in which there is a loss of consciousness. Loss of consciousness implies an interference with the person interacting with his or her environment.

Examples include: Simple partial seizures (also called Jacksonian or partial sensory seizures), and Complex partial seizures (also called psychomotor or temporal lobe seizures, or frontal lobe seizures, or occipital lobe seizures.)

3) Other Types: Examples of other types of seizures that are not just focal or just generalized including infantile spasms.

It is also important to know about pseudoepileptic seizures or psychogenic non-epileptic seizures (PNES)

Why do some have seizures and others do not?

Given the complicated and dynamic human brain – capable of thought, music, art and science – it’s remarkable that the circuits do not misfire more frequently. The brain’s complex inhibition prevents most seizures while allowing normal function. However, any disease that affects the central nervous system circuits including brain damage before or at birth, brain trauma, tumors, strokes, infections, metabolic disorders, or genetic defects are known causes for seizure.

What are the signs or symptoms of seizures that indicate someone might have epilepsy?

The following symptoms may indicate someone has epilepsy. A medical exam is advised if one or more of these symptoms are present. 

  • Short periods of blackout or confused memory
  • Occasional ‘fainting spells’ in which bladder or bowel control is lost, followed by extreme fatigue
  • Episodes of blank staring in children and teenagers
  • Brief periods of no response to questions or instructions
  • Sudden falls in a child for no apparent reason
  • Episodes of blinking or chewing at inappropriate times
  • A convulsion with or without a fever
  • Strange sensations, and even visual or auditory hallucinations
What should I do if I suspect I have seizures/epilepsy?

If you think you or a loved one might be having seizures, discuss it with your doctor. Keep a record of how often the episodes occur, the time of day it happens, and how it appears. Record the seizures on your smart phone if possible. This information will help the doctor diagnose the epilepsy and determine what tests are needed.

Epilepsies

What is the distinction between seizures and epilepsy?

Seizures are symptoms or manifestations of epilepsy. Epilepsy is the underlying tendency of the brain to produce these sudden bursts of abnormal electrical activity that manifest as seizures. A number of factors can cause a brain to seize but that doesn’t necessarily mean the person has epilepsy. For example, a single seizure caused by a high fever, a head injury, acute lack of oxygen, or alcohol withdrawal is not necessarily an “epileptic seizure”.

What is epilepsy (previously used definition)?

Epilepsy has long been known as the underlying tendency of the brain to produce seizures caused by sudden bursts of abnormal electrical energy that disrupt other brain functions. These disturbances may affect a person’s consciousness, sensations, and movements of their body for a short period of time, and these are known as seizures. 

For many years, our website defined “the epilepsies” as non-communicable diseases of the brain. 

What is the new definition of epilepsy?

In 2014, the International League Against Epilepsy identified the epilepsies as “diseases of the brain” and announced a new definition for the epilepsies. 

A person is considered to have epilepsy if they meet any of the following three conditions.

  1. At least TWO unprovoked (or reflex) seizures occurring greater than 24 hours apart. (This is the same as the old definition of epilepsy.)
  2. ONE unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years. This means person can be diagnosed with epilepsy after only one seizure if there is a high risk of having another seizure. Often, the risk will not precisely be known and so the old definition will be employed, i.e., waiting for a second seizure before diagnosing epilepsy.
  3. Diagnosis of an epilepsy syndrome. As before, an epilepsy syndrome is a group of signs and symptoms that, added together, suggest a particular type of epilepsy. In epilepsy, examples of these signs and symptoms would be things like the age at which seizures begins, the type of seizures, whether the child is male or female, whether they experience difficulties with learning, and the prognosis or outcome. An example of an epilepsy syndrome is benign epilepsy with central-temporal spikes, previously known as benign rolandic epilepsy, which is usually outgrown by age 16 and always by age 21. 
What causes epilepsy?

Sometimes the cause of epilepsy is not known. In other cases, epilepsy may be caused by any of the following: Head trauma, trauma before or during birth including lack of oxygen during birth, brain tumors, genetics, lead poisoning, abnormal brain development before birth, infections like meningitis or encephalities, febrile seizures in childhood, neurocysticercosis which is caused by the eggs of a parasite that go to the brain, and brain strokes and dementia.

When does epilepsy more commonly occur?

About 30% of new cases begin in childhood and particularly in early childhood and around the time of adolescence. Another period of relatively high incidence is in people over the age of 65. However, epilepsy can develop at any time of life. 

Scope of epilepsy

Who can get epilepsy?

Actually, according to the World Health Organization, “Epilepsy is the most common serious brain disorder in the world with no boundaries for age, race, social class, national or geography.” In other words, there might be 2 to 3 other serious brain disorders that are more common but those brain diseases are usually only found in certain age groups or in only some races or countries. Epilepsies are found in all ages, races, social classes and nations. Epilepsy can strike at any time in one’s life. The rich and the poor have epilepsy. Epilepsy is a shared experience across color lines, generation gaps, and gender differences. 

How common is epilepsy?

In fact, the epilepsies are more common than most people realize:

  • 1 in 26 people will be diagnosed with epilepsy in his or her lifetime.
  • About 65 million people in the world have epilepsy.
  • About 3 million people in the USA have epilepsy.
  • The # with epilepsy = 2 x the combined # with cerebral palsy + muscular dystrophy + multiple sclerosis + Parkinson’s disease.
  • 800,000 people in USA live with with uncontrolled seizures.
  • 360,000 children under 15 years of age are affected with epilepsy.
  • Every 3 minutes a new person is diagnosed with epilepsy.
  • Approximately 200,000 new cases of epilepsy are diagnosed each year.

Diagnosis+Impact of epilepsy

How is epilepsy diagnosed?

The doctor’s main tool in diagnosing epilepsy is a comprehensive neurological evaluation and medical history is needed. This should include as much information as possible about

1) Birth history

2) Family medical history, including previous generations and relatives

3) History of brain injury or brain infection

3) Age when the seizures started, including the seizures you may not have recognized at the time as being seizures but now suspect or know were seizures.

4) Description of what the seizures look like, how they start and what happens just before they begin. (A home video taking on your smart phone can help with this.)

A second major tool is an electroencephalogram (EEG) recording of the brain waves. Electrical signals from brain are recorded as wavy lines by the machine. The brain waves during or between seizures may show special patterns which help the doctor decide whether or not someone has epilepsy, and what kind of epilepsy.

A third type of tool images the brain. Brain imaging scans, such as CT (computerized tomography) or MRI (magnetic resonance imaging), may be used to search for any growths, scars, abnormal cell development, stroke, or other physical characteristics of the brain that may be causing seizures.  Positron emission tomography (PET) is used and available at most epilepsy centers for further image the brain and identify the areas of the brain producing the seizures.

IMPORTANT NOTE: A ‘normal’ EEG and/or a ‘normal’ MRI does not rule out a diagnosis of epilepsy.

Knowing your type of epilepsy should help guide selection of the best treatment(s) for your epilepsy. 

What is the impact of the epilepsies?

The impact of the epilepsies is very personal for you and your families. Below are some general facts and figures that indicate the impact of the epilepsies on our nation and the world.  

  • The epilepsies affect almost 3 million people of all ages in the USA at an estimated annual cost of $15.5 billion in direct and indirect costs.
  • There are many kinds of epilepsy, and the different kinds of epilepsy of varying causes and severity affect people differently.
  • The experience of epilepsy is sometimes complicated by other medical and neurological problems. And the experience and response to epilepsy can be somewhat unique depending on a person or family’s cultural influences, religious beliefs, education and access to resources.
  • Though a variety of treatment options enable 60-70% to live seizure free most of the time, still various barriers and burdens can negatively impact the quality of life of many with epilepsy.
  • Epilepsy can affect all aspects of life — development, learning, relationships, driving, employment, psychosocial adjustment — for the persons affected and their families.
  • No type of epilepsy should be taken lightly. Every year in USA, 25,000 to 50,000 people will die of seizure related causes. 

Treatments for epilepsy

What are the treatments for epilepsy?

There are an increasing number of treatment options, but there are still no cures for the epilepsies. To differing degrees, all the treatment options carry varying degrees of risks and side-effects. Different treatments should be used for different kinds of epilepsy. In other words, the diagnosis is important.

Medications

For many years, antiepileptic drugs (phenobarbital, phenytoin [Dilantin], valproate [Depakote], and carbamazepine [Tegretol]) were the only drugs available. Since 1993, other antiepileptic drugs have been approved. These include felbamate [Felbatol], topiramate [Topamax], lamotrigine [Lamictal], an improved Tegretol now known as Tegretol XR and then Trileptol, and leviteracetam [Keppra]. These medications control different types of seizures. Doctors usually try to control seizures with one or as few drugs as possible. An anti-seizure medication needs to reach a certain level in the blood in order to be most effective and that may somewhat depend upon the person. The best level that controls seizures in that person should be maintained. It is also important not to exceed the most effective level as that can cause excessive sleepiness, other side-effects and even increased seizures. It is important to follow the instructions and typically the medications are introduced slowly and withdrawn slowly. Never stop a anti-seizure medication abruptly.

Dietary Therapies

The ketogenic diet is an old and now renewed and more readily available treatment option. It has been used in the past and has now found new support and use as a result of advocacy work by The Charlie Foundation for Ketogenic Therapies and the desperate pleas of parents for more successful treatment options for their children.

For more information go to: The Charlie Foundation for Ketogenic Therapies

Surgeries

Surgery is still an option for some kinds of seizures. There are various types of surgeries. Please consult a team who are experienced with epilepsy surgery to determine whether or not surgery is appropriate and what type of surgery is appropriate for you. As with other treatment options, the decision to proceed with surgical treatment option should involve the person with epilepsy (if possible) and the family members.

Vagus Nerve Stimulation (VNS)

VNS is a kind of therapy that fights seizures by sending small pulses of electrical energy from an implanted battery to a large nerve in the neck, the vagus nerve.

CBD

For more information go to: Realm of Caring California

 

Managing epilepsy

As you learn more, you will be better able to participate as part of your own healthcare team and partner with your doctor. Prepare for your clinic visits and discuss these things with your doctor. 

  • Learn about the side effects of treatment and what to do if they occur. Find the balance between no seizures and no side-effects that works for you.
  • Take the prescribed medications regularly.
  • Find out if switching your anti-seizure medication from a brand to generic or from one generic to another generic may affect your seizure control.
  • Track and learn about your own seizure triggers and discuss what lifestyle changes you can make to help prevent your seizures. This probably includes getting regularly sleep and avoiding unusual stress. For some, it means reducing exposure to light or flickering or pulsating or strobe lights.
  • Learn about safety measures to reduce injury, improve safety, and reduce the risk of early death — while you continue to pursue seizure freedom with treatment. 
  • Develop a Seizure Action Plan with your doctor. Make sure it works for you and inform those around you about the plan. 
  • Use tips and tools as you take an ever more active role in preventing your seizures. Lifestyle choices, such as proper sleep, stress reduction, exercise, and treatment compliance can often make a big difference.
  • Actively pursue END EPILEPSY for you and your family and for the community at large. You can do this by educating yourself and those around you about your seizures/epilepsy, sharing your story to spread awareness, connecting with others, joining the END EPILEPSY Walk+Run, participating in research and living with HOPE.

Specialists+Epilepsy Centers

What types of doctors treat epilepsy?

Neurologists and pediatric neurologists are trained in diagnosing and treating epilepsy and many other neurological disorders. Some have more experience than others depending on their amount of actual training in epilepsy and whether they currently focus on and remain current in epilepsy diagnosis and treatment. Many neurologists also specialize in epilepsy. 

In some areas, where there are neurologists are scarce, people with epilepsy will be treated by pediatricians, internists, family physicians and neurosurgeons. 

Specialized care for people whose seizures are difficult to control is available in large medical centers and university medical centers with “Epilepsy Centers”. 

Epilepsy Specialists, also known as Epileptologists, undergo 1-3 extra years of training in epilepsy and EEG, beyond their neurology training.

What are epilepsy specialists or epileptologists?

If I have seizures, do I need to see a neurologist who specializes in epilepsy? This is recommended. Request that your primary doctor or pediatrician refer you to a neurologist who specializes in epilepsy. The epilepsy specialist can work with your primary doctor to help manage your seizures.

For good diagnosis and treatment, the most important thing is a very careful history done by a concerned physician. The history is then supplemented by an examination including a neurological exam and other ancillary test including electroencephalography (EEG) awake and asleep, magnetic resonance imaging (MRI), positron emission tomography, and blood studies. The diagnosis of the type of seizure and epilepsy syndrome are very important in treating patients because they determine the evaluation, the treatment more likely to be effective, and the prognosis of that patient.

What can I expect from my neurologist or epileptologist?

The epilepsy specialist will work with your primary doctor to:

1) Verify that your seizures are epileptic in nature.
2) Diagnose and define your type of seizure types and your epilepsy syndrome.
3) Determine the likely cause of your epileptic seizures (if known).
4) Work with you to identify and stop your trigger factors.
5) Establish an early treatment plan based on #1 to #3 and discussions with you and your family.
6) Work with you to monitor seizure control and recognize adverse effects of treatment and of seizures in order to balance the effects of both with your quality of life.
7) If first treatment plan does not work, explore other treatment options with your doctor.

What are Epilepsy Centers?

Comprehensive epilepsy centers have the resources to diagnose and treat epilepsy in all its forms and focus on either curing or alleviating the epilepsy by stopping or reducing the seizures.

Contact Helpline | 800.564.0445 | Email

Resource Center | Tools + Resources

Other Resources

Our digital Brian Alan Sitomer Memorial Resource Center and links from Learn More provide information, resources, and tools.

Please contact us at Help@EndEpilepsy.org if you can’t find information you seek and we will work to add it.

In addition, the Epilepsy Foundation national office is continually updating and adding information to Epilepsy.com for your use.

Epilepsy Foundation Ι epilepsy.com

American Epilepsy Society Ι aesnet.org

Citizens United for Research in Epilepsy Ι cureepilepsy.org

The Charlie Foundation for Ketogenic Therapies Ι charliefoundation.org

 

Balance best possible seizure control
and optimal quality of life.