Epilepsy

Epilepsy

Epilepsy is a chronic brain disorder that causes repeated seizures affecting around 50 million people worldwide. While there is currently no cure, up to 70% of people with epilepsy can live seizure-free with proper treatment and management.

Table of contents

What Is Epilepsy?

Epilepsy is a chronic brain disorder that causes repeated seizures due to abnormal electrical signals in the brain. A seizure is a sudden change in normal brain activity that lasts from a few seconds to a few minutes. During a seizure, many nerve cells in the brain send signals at the same time, much faster than normal. This surge of excessive electrical activity may cause involuntary movements, sensations, emotions, behaviors, or loss of awareness[1][5].

Normally, the brain continuously generates tiny electrical impulses in an orderly pattern. These impulses travel along the network of nerve cells in the brain and throughout the body via chemical messengers called neurotransmitters. In epilepsy, the brain’s electrical rhythms have a tendency to become imbalanced, resulting in recurrent seizures[8].

Epilepsy is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition, such as alcohol withdrawal or extremely low blood sugar. One seizure does not signify epilepsy—up to 10% of people worldwide have one seizure during their lifetime[2][5].

Epilepsy is also called a seizure disorder. It is not contagious and cannot spread from person to person[3].

Who Gets Epilepsy?

Anyone, of any age, race, or sex, can develop epilepsy. It affects people of all ages, races, and ethnic backgrounds[4][7].

Epilepsy is common. Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally[2]. In the United States, about 3.4 million people have epilepsy. Of this number, 3 million are adults and 470,000 are children. There are 150,000 new cases of epilepsy in the U.S. each year[3][4].

Symptoms of epilepsy often start in young children and people over 50, but it can happen at any age[6]. Nearly 80% of people with epilepsy live in low- and middle-income countries[2].

Signs and Symptoms

Usually the only symptom of epilepsy is having seizures. The signs of a seizure depend on which type of seizure it is and where in the brain the disturbance first starts[2][6].

Seizures might look different than you expect. A person with epilepsy is often shown falling down, shaking, and losing awareness in popular media, but that’s one kind of seizure and not the most common. More often, someone having a seizure may[3]:

  • Seem confused
  • Stare into space
  • Wander
  • Make unusual movements
  • Be unable to answer questions

Other symptoms of seizures can include[6]:

  • Your body becoming stiff or floppy
  • Suddenly falling to the floor
  • Jerking or twitching movements in your body
  • Peeing unintentionally
  • Losing awareness of what’s around you
  • Unusual feelings or sensations, such as strange smells, numbness or tingling, changes in your vision, or suddenly feeling scared
  • Unusual behavior, such as fidgeting or walking around and not being aware of what you’re doing

A seizure usually lasts a few seconds or minutes, and stops by itself. You might be aware of having a seizure and remember it afterwards, or you might not[6]. Temporary symptoms occur, such as loss of awareness or consciousness, and disturbances of movement, sensation (including vision, hearing, and taste), mood, or other cognitive functions[2].

What Causes Seizures?

Epilepsy can be caused by different conditions that affect the brain. Some of these causes are preventable. Many times, doctors don’t know the cause. Less than half of newly diagnosed cases of epilepsy have a known cause[3].

Epilepsy may develop because of problems in the brain’s wiring, an imbalance of nerve signaling in the brain, developmental brain abnormalities, infection, traumatic brain injury, stroke, brain tumors, or other identifiable problems. Anything that disturbs the normal pattern of nerve cell activity—from illness to brain damage to brain development problems—can lead to seizures[5].

Some known causes of epilepsy include[3]:

  • Cysticercosis infection, the leading cause of epilepsy worldwide
  • Stroke
  • Brain tumor
  • Traumatic brain injury
  • Loss of oxygen to the brain
  • Genetic conditions (such as Down syndrome)
  • Other neurological diseases (such as Alzheimer’s disease)

In some cases, epilepsy is clearly linked to genetic factors. Hereditary factors are important in primary generalized epilepsy, which is more likely to involve genetic factors than partial epilepsy[8].

Types of Seizures

There are many different types of epilepsy and seizures. Healthcare providers classify epilepsies by their seizure type. Seizure categories are based on where they start in your brain, your level of awareness during a seizure, and by presence or absence of muscle movements[4].

There are two major seizure groups[4]:

Focal Onset Seizures

Focal onset seizures start in one area, or network of cells, on one side of your brain. This seizure used to be called partial onset seizure. There are two types of focal seizures[4]:

Focal onset aware seizure means you’re awake and aware during the seizure. Symptoms may include changes in your senses—how things taste, smell, or sound; changes in your emotions; uncontrolled muscle jerking, usually in arms or legs; seeing flashing lights, feeling dizzy, or having a tingling sensation[4].

Focal onset impaired awareness seizure means you’re confused or have lost awareness or consciousness during the seizure. Symptoms may include blank stare or “staring into space,” and repetitive movements like eye blinking, lip-smacking or chewing motion, hand rubbing, or finger motions[4].

Generalized Onset Seizures

Generalized onset seizures affect a widespread network of cells on both sides of your brain at the same time. There are six types of generalized seizures[4]:

Absence seizures cause a blank stare or “staring into space” with a brief loss of awareness. There may be minor muscle movements, including eye blinking, lip-smacking or chewing motions, hand motions, or rubbing fingers. Absence seizures are more common in children, last for only seconds (usually less than 10 seconds), and are commonly mistaken for daydreaming[4].

Atonic seizures mean you’ve lost muscle control or your muscles are weak during your seizure. Parts of your body may droop or drop[4].

Tonic-clonic seizures (also called grand mal seizures) are where you become unconscious and may fall, your muscles get stiff, and your body jerks and shakes[6].

Tonic seizures cause your muscles to suddenly get stiff and you may fall, then recover quickly[6].

Myoclonic seizures cause your muscles to briefly jerk[6].

Diagnosing Epilepsy

If you or your child have had a seizure, you’ll need to see a specialist doctor. They’ll check what caused it and whether you might have epilepsy. They’ll ask about what happened before, during, and after the seizure. If someone else saw the seizure, it can help to bring them with you to your appointment[6].

Tests you might have include[6]:

  • An electroencephalogram (EEG) to check electrical activity in your brain
  • An electrocardiogram (ECG) to check your heart
  • Scans such as an MRI scan or CT scan
  • Blood tests
  • Genetic testing

Having a seizure does not always mean you have epilepsy, as seizures can have other causes. You’ll usually be diagnosed with epilepsy if you’ve had more than one seizure, or if tests show you’re at risk of having more seizures[6].

It is important for doctors to understand the cause of your seizures so they can identify the type of epilepsy you have and the best treatment for you[11].

Treatment Options

Although epilepsy can’t be cured, many treatment options are available. Up to 70% of people with epilepsy can manage the disease with medications[4]. It is estimated that up to 70% of people living with epilepsy could live seizure-free if properly diagnosed and treated[2].

Medicines

The main treatment for epilepsy is medicine to prevent seizures, called anti-epileptic or anti-seizure medicine. Anti-seizure medicines limit the spread of seizures in the brain. There are different anti-epileptic medicines. The medicine recommended for you depends on the type of seizures and things like your age, sex, and any other conditions you have[6][11].

It may take time to find the right medicine. Sometimes you’ll need a combination of medicines. It’s very important to take your medicine as prescribed. Medicines work for about 2 in 3 people with epilepsy[11].

Medicines can cause side effects like tiredness or trouble thinking. Let your healthcare provider know if you’re having any side effects, so they can adjust the medicine if needed. You should not skip or stop taking your seizure medicine without talking to your provider. Suddenly stopping your medicine might cause withdrawal symptoms, including life-threatening seizures[11].

If you have not had a seizure for 2 years, your specialist may suggest you try stopping your medicine[6].

Surgery

When seizures come from a single area of the brain (focal seizures), surgery might be helpful. Removing the affected area may stop future seizures or make them easier to control with medicine[11].

Seizure Devices

Vagus nerve stimulation: An electrical device is placed under the skin on the upper chest. It sends energy pulses to the brain through the vagus nerve. This can stop seizures[11].

Responsive nerve stimulation: An electrical device is placed in the brain to find the area where seizures are coming from. It then sends energy pulses to that area to prevent seizures[11].

Diet

If medicine doesn’t work and surgery isn’t an option, there are other treatments that might help. Your doctor may suggest a ketogenic diet, which is a strict, high-fat, low-carbohydrate diet. It’s typically used in children whose seizures won’t stop. It’s prescribed by a healthcare provider and monitored by a dietician[11].

Alternative Therapies

Cannabidiol (CBD) is a substance found in the Cannabis sativa plant. The FDA has approved only one CBD product for medicinal usage, the prescription drug Epidiolex, to treat seizures associated with certain types of epilepsy in patients one year of age and older[15].

Living with Epilepsy

Many people with epilepsy do well with treatment and live a full life. Taking care of yourself can help you control your seizures and lead a fuller life. Learning everyday strategies and skills to manage epilepsy can help you feel better and improve your quality of life[3][18].

Everyday Strategies

Understand epilepsy and your treatment: Learn about your condition. Take your seizure medicines as prescribed. Check with your doctor before taking other medicines or supplements. Talk to your doctor about health concerns[18].

Manage your seizures: Track your seizures to understand patterns. Pay attention to the things that can trigger your seizures so you can avoid them if possible[18].

Practice a healthy lifestyle[18]:

  • Get at least 7 to 8 hours of sleep each night. Fatigue is one of the most common seizure triggers[17]
  • Exercise regularly and safely each day. Daily aerobic exercise can improve your mood, health, and overall self-esteem, and may reduce the number of seizures you experience[17]
  • Eat a well-balanced diet and keep a healthy weight
  • Don’t use tobacco
  • Limit your alcohol intake. Avoid alcohol as it may interfere with your medications[17]
  • Avoid using illegal drugs
  • Keep other health conditions in check

Take care of your mental health: Practice ways to lower stress. Stress is a known trigger of seizures[17][19]. Get help for emotional problems. Use strategies to help with memory problems. Keep in touch with friends and family[18].

Depression commonly occurs with epilepsy. Depression and anxiety are very treatable conditions that can have a major effect on quality of life[25]. People with epilepsy are likely to experience mental health challenges, such as anxiety and depression[19].

Safety Measures

Make your home safer in the event you have a seizure. Be active, but depending on your type of seizures, certain activities such as swimming, rock climbing, and contact sports should be avoided as they could place you in a dangerous situation should you have a seizure[17].

Wear a medical alert bracelet or necklace to alert others of your condition in case of emergency. Inform close contacts, such as family, friends, and coworkers, about your epilepsy and what to do if you have a seizure[24].

Safety and First Aid

Seizure first aid is easy to learn and to give. If you are with someone having a tonic-clonic seizure (where the body stiffens, followed by general muscle jerking), try to[3][23]:

  • Stay calm and remain with the person
  • Keep them safe and protect them from injury
  • Place something soft under their head and loosen any tight clothing
  • After the seizure is over, roll them on their side (if they have food or fluid in their mouth, roll them onto their side immediately)
  • Reassure the person until they recover
  • Time the seizure, if you can

Do not put anything into their mouth or restrain or move the person, unless they are in danger[23].

When to Call 999 or Emergency Services

You should call emergency services if[6]:

  • It’s the first time someone has had a seizure
  • The seizure lasts longer than is usual for them, or longer than 5 minutes if you do not know how long their seizures usually last
  • They do not recover as usual afterwards, or they have another seizure without recovering between seizures
  • They’ve now had 3 or more seizures in 24 hours

People with epilepsy do not always need to go to hospital when they have a seizure. They usually have a care plan that says what to do, such as giving emergency medicine and when to call emergency services[6].

Risks and Complications

Epilepsy, like other long-term conditions, comes with certain risks. If left unchecked these can become very serious. Seizure-related risks are higher when people have poorly controlled seizures[23].

People with epilepsy tend to have more physical problems (such as fractures and bruising from injuries related to seizures)[2]. Seizures can sometimes lead to injuries or falls, and they can occasionally be more serious—even contributing to, or causing, death[23].

The risk of premature death in people with epilepsy is up to three times higher than for the general population[2].

Sudden Unexpected Death in Epilepsy (SUDEP)

Sudden Unexpected Death in Epilepsy (SUDEP) is a serious concern for people with epilepsy. Good seizure control is the first step in reducing seizure-related risks, including SUDEP[23].

Taking positive action to reduce your seizures, thinking about risks specific to you, and discussing seizure management with your doctor are a start to reducing some of your seizure-related risks[23].

Ongoing Clinical Trials on Epilepsy

  • Evaluation of 18F-DPA-714 PET-MRI imaging for locating epileptic focus in patients with drug-resistant partial epilepsy before surgery

    Recruiting

    1 1 1
    Investigated diseases:
    France
  • Study on the Safety and Effectiveness of Sirolimus and Vigabatrin for Preventing Symptoms in Infants with Tuberous Sclerosis Complex

    Recruiting

    4 1 1
    Investigated diseases:
    Investigated drugs:
    Poland
  • Study on the Effectiveness and Safety of Sirolimus for Patients with Drug-Resistant Epilepsy Linked to Tuberous Sclerosis Complex

    Recruiting

    3 1 1
    Investigated diseases:
    Investigated drugs:
    Poland
  • Study on Clioquinol for Reducing Seizures in Patients with Drug-Resistant Epilepsy

    Recruiting

    2 1 1
    Investigated diseases:
    Investigated drugs:
    Belgium
  • Study on Cannabidiol for Reducing Seizures in Children and Young Adults with Severe Epilepsy Associated with Rare Diseases

    Recruiting

    2 1 1 1
    Investigated diseases:
    Investigated drugs:
    Italy
  • [18F]CPFPX PET in Patients With Drug-Resistant Epilepsy and Healthy Subjects

    Not yet recruiting

    2 1 1
    Investigated diseases:
    Investigated drugs:
    France
  • A study of TRV045 to test its effects on brain cell electrical activity in healthy adult men for epilepsy treatment development

    Not recruiting

    1 1
    Investigated diseases:
    Investigated drugs:
    The Netherlands
  • Study on the Safety and Effectiveness of Sirolimus for Treating Drug-Resistant Epilepsy in Children with Rare Brain Disorders Linked to mTOR Pathway Activation

    Not recruiting

    2 1 1 1
    Investigated diseases:
    Investigated drugs:
    Poland
  • Long-Term Safety Study of Lacosamide for Children with Epilepsy

    Not recruiting

    3 1 1
    Investigated diseases:
    Investigated drugs:
    Hungary Romania
  • Study on PRAX-628 for Epilepsy Patients with Light-Induced EEG Response

    Not recruiting

    2 1
    Investigated diseases:
    Investigated drugs:
    The Netherlands

References

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https://www.who.int/news-room/fact-sheets/detail/epilepsy

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https://www.who.int/news-room/fact-sheets/detail/epilepsy

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https://www.who.int/health-topics/diagnostics

https://pmc.ncbi.nlm.nih.gov/articles/PMC6558629/

https://www.yalemedicine.org/clinical-keywords/diagnostic-testsprocedures

https://www.health.harvard.edu/diagnostic-tests-and-medical-procedures