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Knowing a seizure can strike at any moment can be distressing. Clinical research may be your next step.

Epilepsy

With epilepsy, abnormal brain activity causes unpredictable seizures (unusual behavior, sensations or loss of awareness). Knowing this can happen anywhere, anytime can make you feel isolated, anxious or fearful. Having epilepsy can greatly affect your ability to attend school, work or take part in social activities.

As many as 50 million people worldwide are living with epilepsy, according to the World Health Organization. Many people go undiagnosed and untreated, partly due to the stigma and misunderstandings associated with it. For many, the seizures can be controlled with medication, diet, devices and/or surgery. For others, however, available treatments may not effectively control seizures. That is why clinical research into epilepsy and its treatment is so important. Read on to learn more.

If you are living with Epilepsy and age 18 or older, we would like to hear from you.

  • Take our brief online survey to be considered for an upcoming clinical trial.*
  • We also invite you to join our Epilepsy Team online patient community to connect with others facing this condition.

*If you are eligible and choose to participate, you will receive all study-related care and study medication at no cost during your participation. Compensation for study-related travel costs may also be provided.

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Causes & Symptoms

Who gets epilepsy?

Epilepsy affects both males and females of all races, ethnic backgrounds and ages. Different types of epilepsy affect people differently.

What causes epilepsy?

Epilepsy is caused by abnormal brain activity. There are many different causes, such as:

  • brain damage from birth-related problems (e.g., loss of oxygen or trauma during birth or low birth weight)
  • congenital abnormalities or genetic conditions with associated brain malformations
  • severe head injury
  • stroke that restricts the amount of oxygen to the brain
  • infection of the brain such as meningitis, encephalitis or neurocysticercosis
  • certain genetic syndromes
  • a brain tumor

What are the main symptoms of epilepsy?

There are many different types of epilepsy, and symptoms vary depending on which part of the brain is affected. Seizures can range from a brief lapse of attention or muscle jerks to severe and prolonged convulsions. They can also vary in frequency, from less than one per year to several per day.

Example signs and symptoms include:

  • Temporary confusion
  • A staring spell
  • Uncontrollable jerking movements of the arms and legs
  • Loss of consciousness or awareness
  • Psychic symptoms such as fear, anxiety or déjà vu

What complications are associated with epilepsy?

Having a seizure at certain times or under certain circumstances can be dangerous to you or others. For example:

Epilepsy

  • Head injury or broken bone due to falling during a seizure
  • Drowning due to having a seizure while swimming or bathing
  • Car accident due to loss of awareness or control from a seizure while driving or operating equipment
  • Seizures during pregnancy can pose dangers to both mother and baby
  • Certain anti-epilepsy medications increase the risk of birth defects
  • Depression, anxiety or other psychological problems resulting from difficulties dealing with the condition itself or medication side effects

Other life-threatening complications of epilepsy, although uncommon, may include:

  • Status epilepticus — a state of continuous seizure activity lasting more than 5 minutes or frequent recurrent seizures without regaining full consciousness in between them. People with status epilepticus have an increased risk of permanent brain damage and death.
  • Sudden unexpected death in epilepsy (SUDEP) — sudden unexpected death due to unknown cause in people with epilepsy. Research suggests it may be due to heart or respiratory conditions. (This affects only about 1% of people with epilepsy.)

Sources: 1. World Health Organization 2. Mayo Clinic


Prevention

An estimated 25% of epilepsy cases are preventable, according to the World Health Organization. Some preventive measures include:

Epilepsy

  • Taking steps to avoid head injury such as wearing a seat belt while riding in a car and wearing a helmet while bicycling, skiing, riding a motorcycle or engaging in other activities with a high risk of head injury.
  • Getting adequate care during pregnancy and after childbirth to reduce birth-related injury to infants.
  • Lowering the body temperature of a feverish child to reduce the chance of fever-related (febrile) seizures.
  • Controlling cardiovascular risk factors associated with stroke, e.g. high blood pressure, diabetes and obesity, avoiding tobacco and limiting alcohol use.
  • In tropical areas, avoiding central nervous system infections, e.g. eliminating parasites that can transmit these infections.
  • Washing hands and preparing food safely to avoid an infection called cysticercosis, which is the most common cause of epilepsy worldwide.

Sources: 1. World Health Organization 2. Mayo Clinic 3. Centers for Disease Control and Prevention


Triggers

Some – but not all – people with epilepsy find that their seizures happen in a pattern or as a result of a trigger. Therefore, it may be helpful to keep a journal to track anything that brings on a seizure (called a seizure trigger). By knowing what triggers a seizure, you can then take steps to avoid, or reduce these triggers whenever possible. Some common triggers are:

  • Specific time of day or night
  • Lack of sleep – overtired, not sleeping well, not getting enough sleep
  • At times of fevers or other illnesses
  • Flashing bright lights or patterns
  • Alcohol or drug use
  • Stress
  • Menstrual cycle (women) or other hormonal changes
  • Not eating well, low blood sugar
  • Specific foods, excess caffeine or other products that may aggravate seizures
  • Certain medications

Sources: 1. Epilepsy Foundation


Diagnosis & Treatment

When is a seizure considered epilepsy?

In general, a person must have at least 2 different seizures to be diagnosed with epilepsy. The seizures are generally classified as focal (partial) or generalized, depending on the brain activity and symptoms.

What are the different types of seizures?

Focal (partial) seizures take place in one area of the brain. There are two types:

  • Focal seizures without loss of consciousness (simple partial seizures) – may alter emotions or change the way things look, smell, feel, taste or sound. They may involve involuntary jerking of a body part, such as an arm or leg, or tingling, dizziness and flashing lights.
  • Focal seizures with impaired awareness (complex partial seizures) — involve a change or loss of consciousness or awareness, e.g., staring and not responding normally or making repetitive motions, such as hand rubbing, chewing, swallowing or walking in circles.

Generalized seizures appear to involve all areas of the brain. There are 6 main types:

  • Absence seizures (petit mal seizures) – involving staring into space or subtle body movements such as eye blinking or lip smacking. These seizures often occur in children and can appear in clusters and cause a brief loss of awareness.
  • Tonic seizures – causing stiffening of the muscles, usually in the back, arms and legs, which may cause you to fall to the ground.
  • Atonic seizures (drop seizures) — causing a loss of muscle control, which may make you suddenly collapse or fall down.
  • Clonic seizures — associated with repeated or rhythmic, jerking muscle movements usually affecting the neck, face and arms.
  • Myoclonic seizures – causing sudden brief jerks or twitches in the arms and legs.
  • Tonic-clonic seizures (grand mal seizures) – which can cause an abrupt loss of consciousness, body stiffening and shaking, and sometimes loss of bladder control or biting the tongue.

What tests are used to diagnose epilepsy?

Neurologists (specialists in diseases of the nervous system) use a variety of tests and procedures to diagnose epilepsy and rule out other problems, such as:

Epilepsy

  • Blood tests – to check for signs of infections, genetic conditions or other medical conditions that may be associated with seizures.
  • Neurological exam – to check behavior, motor abilities, mental function and other areas to determine the type of epilepsy.
  • Electroencephalogram (EEG) – in which electrodes are attached to the scalp to record electrical activity in the brain. This is the most commonly used test to diagnose epilepsy.
  • Computerized tomography (CT) scan – a type of brain scan used to create detailed cross-sectional images of the brain for diagnosing possible medical problems that may be causing seizures, such as tumors, bleeding or cysts.
  • Magnetic resonance imaging (MRI) – a type of brain scan used to produce detailed images of the brain and blood vessels for use in diagnosing brain and nervous system (neurological) conditions.
  • Functional MRI (fMRI) – a type of brain scan which measures changes in blood flow in the brain when specific parts of the brain are working, to locate areas of critical functions such as speech and movement. This may be used before or during surgery to pinpoint important areas in the brain to avoid, or else areas where the seizures are happening.
  • Positron emission tomography (PET) – in which a small amount of low-dose radioactive material is injected into a vein prior to scanning to help visualize active areas of the brain and detect abnormalities.
  • Single-photon emission computerized tomography (SPECT) — used to further pinpoint the location in the brain where the seizures are originating, in which a small amount of low-dose radioactive material is injected into a vein to create a detailed, 3-dimensional map of the blood flow activity in the brain during seizures. A form of a SPECT test may also be used, called subtraction ictal SPECT coregistered to MRI (SISCOM), to provide even more-detailed results.
  • Neuropsychological tests – given to assess thinking, memory and speech skills and help determine which areas of the brain are affected.

In addition to the above tests and scans, analysis techniques may be used to help pinpoint where in the brain seizures start:

  • Statistical parametric mapping (SPM) — a method of comparing areas of the brain that have increased metabolism during seizures to normal brains, which can give doctors an idea of where seizures begin.
  • Curry analysis — a technique that projects EEG data onto an MRI of the brain to show doctors where seizures are occurring.
  • Magnetoencephalography (MEG) – a way of measuring the magnetic fields produced by brain activity to identify potential areas of seizure onset.

Note: Even if the results of these tests appear to be normal, a person may still have epilepsy.

How is epilepsy treated?

Epilepsy

  • Medicine: More than 20 different medicines are available to treat epilepsy. Choosing which medicine and dosage depends on many factors such as seizure type and frequency, lifestyle, age, side effects, other medicines you may be taking for other conditions, and (for women) pregnancy or chances of becoming pregnant while being treated. It may take time to find the right treatment and dosage for you.
  • Surgery: When seizures cannot be managed with medicine, surgery may be an option. Typically, this involves a surgeon removing the area of the brain that causes seizures. After surgery, less medication may be needed to control seizures, although the risks and benefits should be discussed carefully together with the surgeon prior to deciding on this treatment.
  • Vagal nerve stimulation: A device called a vagus nerve stimulator is used to send small bursts of electrical energy through the vagus nerve to the brain. The device is implanted underneath the skin of the chest, like to a pacemaker, and wires from the stimulator are connected to the vagus nerve in the neck.
  • Ketogenic diet: A low-carbohydrate (e.g., breads, pasta, sweets) and moderate-protein, high-fat diet has been found to help reduce some types of seizures in some people with epilepsy. It must be followed very carefully and often requires a hospital stay to get started, as well as regular checkups and vitamin supplements to ensure proper nutrition. This approach should be discussed with your doctor prior to starting.
  • Natural therapy: Alternative treatment options such as herbs, vitamins, biofeedback, yoga, meditation and acupuncture have been used by some people to help manage their epilepsy or reduce stress. These approaches should be discussed with your doctor before starting, especially any supplements, because they may interact with other medicines.
  • Clinical trials: Clinical trials are helping medical researchers better understand, diagnose and treat epilepsy in the future. Learn more.

What lifestyle changes can help manage epilepsy?

Epilepsy

By identifying triggers and managing them, some people can reduce their seizures and/or cope with them better. Some general suggestions for managing epilepsy include:

  • Eat regular, healthy meals
  • Get regular exercise, but do so safely
  • Get enough sleep and follow a regular daily sleep pattern
  • Keep a record of seizures to look for patterns and identify triggers
  • Avoid seizure triggers when possible
  • Manage stress, e.g. through meditation, yoga or other stress reduction techniques
  • Build a support network of family, friends and others who can help you
  • Take your medicine as prescribed and stay in touch with your doctor about any changes
  • Don’t use tobacco, drink alcohol excessively, or abuse other substances

However, no matter what steps you take, and despite taking medicine and making lifestyle changes, you may not be able to prevent all seizures. Do not get discouraged if this happens to you. It’s important to keep in communication with your doctor about what is working and what isn’t so he or she can help you continue to take steps to manage your epilepsy.

Sources: 1. Tan, Qiang & Kundap, Uday & Kumari, Yatinesh & Shaikh, Farooq. (2015). A Review on Natural Therapy for Seizure Disorders. Pharmacy & Pharmacology International Journal. 3. 00051. 10.15406/ppij.2015.02.00051. 2. WebMD: What Is the Ketogenic Diet? 3. Mayo Clinic: Epilepsy Diagnosis & Treatment 4. NHS Health A to Z: Epilepsy Diagnosis 5. NINDS 6. Epilepsy Society: Diagnosing Epilepsy 7. Mayo Clinic 8. Epilepsy Foundation 9. Centers for Disease Control and Prevention


Resources

Epilepsy can have a significant impact on your ability to work, attend school and engage in social activities. Due to their unpredictability, they can make you feel anxious, depressed or isolated. Here are some helpful resources to help you learn more about ways to manage, and cope with, epilepsy.

  • Epilepsy Management Tools – The Epilepsy Foundation offers several downloadable PDFs to help track seizures, triggers and other details to help you manage them with your doctor.
  • For Parents - Information for parents of children with epilepsy or a childhood epilepsy syndrome, available online from the UK-based Epilepsy Society.
  • TalkAboutIt.org – celebrities share their personal stories about living with epilepsy through videos, articles and resources online.
  • My Seizure Diary — a self-management tool provided by the Epilepsy Foundation with a focus on self-monitoring and tracking seizures and other symptoms, managing medication and other therapies, recognizing triggers and health events that may affect seizures and wellness, and communicating with care providers.
  • Parents’ Toolkit – a toolkit of information and support for parents of teens with epilepsy, covering topics such as driving, dating, school, work and other relevant topics.
  • Brain & Life – a free online magazine for people living with neurological conditions, including epilepsy.

Clinical Trials

For uncontrolled seizures, a clinical trial may be a next step.

Clinical trials are investigating potential treatments for people with epilepsy. They are often seeking volunteers to take part.

If you are eligible and choose to participate, you will receive all study-related care and study medication at no cost during your participation.

Have you considered taking part in a clinical trial for adults who are living with epilepsy?

Potential benefits of participating in a clinical trial include:

  • Close care and monitoring by a study doctor and staff throughout the study
  • No cost for study treatment, related tests and procedures
  • Contribute to our understanding of the treatment options for epilepsy in the future

If you would like to be considered for an upcoming clinical trial for adults living with epilepsy, take our survey.

Please take some time to answer a few questions and be considered for an upcoming clinical trial for people with epilepsy. We also invite you to join our Epilepsy Team community to connect with others affected by the disease. (Please note: You must be age 18 or older to take the survey.)

Take Survey

Thank you for sharing with us.

If you would like to be notified about an upcoming clinical trial, you may sign up at the end of our survey.