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Epilepsy: Facts, Statistics, and You

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Epilepsy is a neurological disorder caused by unusual nerve cell activity in the brain.

Each year, about 150,000 Americans are diagnosed with this central nervous system disorder that causes seizures. Over a lifetime, 1 in 26 U.S. people will be diagnosed with the disease.

Epilepsy is the fourth most common neurological disease after migraines, stroke, and Alzheimer’s.

Seizures can cause a range of symptoms, from momentarily staring blankly to loss of awareness and uncontrollable twitching. Some seizures can be milder than others, but even minor seizures can be dangerous if they occur during activities like swimming or driving.

Here’s what you need to know:

Types

In 2017, the International League Against Epilepsy (ILAE) revised its classification of seizures from two primary groups to three, a change based on three key features of seizures:

  • where seizures begin in the brain
  • level of awareness during a seizure
  • other features of the seizures, like motor skills and auras

These three seizure types are:

  • focal onset
  • generalized
  • unknown onset

Focal seizures

Focal seizures — previously called partial seizures — originate in neuronal networks but are limited to part of one cerebral hemisphere.

Focal seizures account for about 60 percent of all epileptic seizures. They last one to two minutes and have milder symptoms that someone may be able to work through, like continuing to do the dishes.

Symptoms may include:

  • motor, sensory, and even psychic (like deja vu) abnormalities
  • sudden, inexplicable feelings of joy, anger, sadness, or nausea
  • automatisms like repetitive blinking, twitching, smacking, chewing, swallowing, or walking in circles
  • auras, or a sense of warning or awareness of an oncoming seizure

Generalized seizures

Generalized seizures originate in bilateral distributed neuronal networks. They can begin as focal, then become generalized.

These seizures can cause:

  • loss of consciousness
  • falls
  • severe muscle contractions

More than 30 percent of people with epilepsy experience generalized seizures.

They can be identified more specifically by these subcategories:

  • Tonic. This type is characterized by stiffening muscles primarily in the arms, legs, and back.
  • Clonic. Clonic seizures involve repetitive jerking movements across both sides of the body.
  • Myoclonic. In this type, jerking or twitching movements occur in the arms, legs, or upper body.
  • Atonic. Atonic seizures involve a loss of muscle tone and definition, ultimately leading to falls or an inability to hold the up head.
  • Tonic-clonic. Tonic-clonic seizures are sometimes called grand mal seizures. They can include a combination of these varied symptoms.

Unknown (or epileptic spasm)

The origin of these seizures is unknown. They manifest by sudden extension or flexion of the extremities. Moreover, they can reoccur in clusters.

Up to 20 percent of people with epilepsy experience nonepileptic seizures (NES), which present like epileptic seizures, but aren’t associated with the typical electrical discharge found in the brain.

Prevalence

It’s estimated that about 1.2 percent of U.S. people have active epilepsy. This comes out to about 3.4 million people nationwide — and more than 65 million globally.

Additionally, about 1 in 26 people will develop epilepsy at some point during their lifetime.

Epilepsy can begin at any age. Studies haven’t identified a prime diagnosis time, but the incidence rate is highest in young children under age 2 and adults aged 65 or older.

Luckily, according to the Child Neurology Foundation, about 50 to 60 percent of children with seizures will eventually grow out of them and never experience seizures as an adult.

Ages afflicted

Worldwide, a quarter of all newly diagnosed cases of epilepsy are in children.

Of the more than 3 million Americans with epilepsy, 470,000 cases are children. Children account for 6.3 out of every 1000 cases of epilepsy.

Epilepsy is most commonly diagnosed before age 20 or after age 65, and that rate of new cases increases after age 55 when people are more likely to develop strokes, tumors, and Alzheimer’s disease.

According to the Child Neurology Foundation:

  • Among children with epilepsy, 30 to 40 percent have only the disease without provoked seizures. They have normal intelligence, learning capability, and behavior.
  • About 20 percent of children with epilepsy also have an intellectual disability.
  • Between 20 to 50 percent of children have normal intelligence but a specific learning disability.
  • A very small number also have a serious neurological disorder, like cerebral palsy.

Ethnicity specifics

Researchers are still unclear if ethnicity plays a role in who develops epilepsy.

It’s not straightforward. Researchers have a hard time pegging race as a significant cause for epilepsy. However, consider this information from the Epilepsy Foundation:

  • Epilepsy occurs more frequently in Hispanics than in non-Hispanics.
  • Active epilepsy is more frequent in whites than blacks.
  • Blacks have a higher lifetime prevalence than whites.
  • An estimated 1.5 percent of Asian Americans currently have epilepsy.

Gender specifics

Overall, no gender is more likely to develop epilepsy than the other. However, it’s possible each gender is more likely to develop certain subtypes of epilepsy.

For example, a 2008 study found that symptomatic epilepsies were more common in men than women. Idiopathic generalized epilepsies, on the other hand, were more common among females.

Any differences that might exist can likely be attributed to biological differences in the two genders, as well as hormonal changes and social function.

Risk factors

There are a number risk factors that give you a higher chance of developing epilepsy. These include:

  • Age. Epilepsy can begin at any age, but more people are diagnosed at two distinct phases in life: early childhood and after age 55.
  • Brain infections. Infections — such as meningitis — inflame the brain and spinal cord, and can increase your risk for developing epilepsy.
  • Childhood seizures. Some children develop seizures not related to epilepsy during childhood. Very high fevers may cause these seizures. As they grow older, however, some of these children may develop epilepsy.
  • Dementia. People experiencing a decline in mental function may also develop epilepsy. This is most common in older adults.
  • Family history. If a close family member has epilepsy, you’re more likely to develop this disorder. Children with parents who have epilepsy have a 5 percent risk of developing the disease themselves.
  • Head injuries. Previous falls, concussions, or injuries to your head may cause epilepsy. Taking precautions during activities such as bicycling, skiing, and riding a motorcycle can help protect your head against injury and possibly prevent a future epilepsy diagnosis.
  • Vascular diseases. Blood vessel diseases and strokes can cause brain damage. Damage to any area of the brain may trigger seizures and eventually epilepsy. The best way to prevent epilepsy caused by vascular diseases is to care for your heart and blood vessels with a healthy diet and regular exercise. Also, avoid tobacco use and excessive alcohol consumption.

Complications

Having epilepsy increases your risk for certain complications. Some of these are more common than others.

The most common complications include:

Car accidents

Many states don’t issue a driver’s license to people with a history of seizures until they’ve been seizure-free for a specified period of time.

A seizure can cause loss of awareness and affect your ability to control a car. You could injure yourself or others if you have a seizure while driving.

Drowning

People with epilepsy are reportedly 15 to 19 times more likely to drown than the rest of the population. That’s because people with epilepsy may have a seizure while in a swimming pool, lake, bathtub, or other body of water.

They may be unable to move or may lose awareness of their situation during the seizure. If you swim and have a history of seizures, make sure a lifeguard on duty is aware of your condition. Never swim alone.

Emotional health difficulties

One-third of people with epilepsy experience depression and anxiety — the most common comorbidity of the disease.

People with epilepsy are also 22 percent more likely to die by suicide than the general population.

Suicide prevention

  1. If you think someone is at immediate risk of self-harm or hurting another person:
  2. • Call 911 or your local emergency number.
  3. • Stay with the person until help arrives.
  4. • Remove any guns, knives, medications, or other things that may cause harm.
  5. • Listen, but don’t judge, argue, threaten, or yell.
  6. If you or someone you know is considering suicide, get help from a crisis or suicide prevention hotline. Try the National Suicide Prevention Lifeline at 800-273-8255.
Healthline

Falls

Certain types of seizures affect your motor movements. You may lose control of muscle function during a seizure and fall to the ground, hit your head on nearby objects, and even break a bone.

This is typical of atonic seizures, also known as drop attacks.

Pregnancy-related complications

Individuals with epilepsy can get pregnant and have healthy pregnancies and babies, but extra precaution is needed.

About 15 to 25 percent of pregnant individuals will have worsening seizures during pregnancy. On the other hand, 15 to 25 percent will also see improvement.

Some antiseizure medications can cause birth defects, so you and your doctor need to carefully evaluate your medications before you plan to get pregnant.

Less common complications include:

  • Status epilepticus. Severe seizures — ones that are prolonged or happen very frequently — can cause status epilepticus. People with this condition are more likely to develop permanent brain damage.
  • Sudden unexplained death in epilepsy (SUDEP). Sudden, unexplained death is possible in people with epilepsy, but it’s rare. It occurs in 1.16 of every 1,000 cases of epilepsy and is ranked second only to stroke in leading causes of death in the disease. Doctors don’t know what causes SUDEP, but one theory suggests that heart and respiratory issues may contribute.

Causes

In about half of epilepsy cases, the cause is unknown.

The four most common causes of epilepsy are:

  • Brain infection. Infections such as AIDS, meningitis, and viral encephalitis have been shown to cause epilepsy.
  • Brain tumor. Tumors in the brain can interrupt normal brain cell activity and cause seizures.
  • Head trauma. Head injuries can lead to epilepsy. These injuries may include sports injuries, falls, or accidents.
  • Stroke. Vascular diseases and conditions, such as stroke, interrupt the brain’s ability to function normally. This can cause epilepsy.

Other epilepsy causes include:

  • Neurodevelopmental disorders. Autism and developmental conditions like it may cause epilepsy.
  • Genetic factors. Having a close family member with epilepsy increases your risk for developing epilepsy. This suggests an inherited gene may cause epilepsy. It’s also possible specific genes make a person more susceptible to environmental triggers that can lead to epilepsy.
  • Prenatal factors. During their development, fetuses are particularly sensitive to brain damage. This damage might be the result of physical damage, as well as poor nutrition and reduced oxygen. All of these factors could cause epilepsy or other brain abnormalities in children.

Symptoms

Symptoms of epilepsy depend on the type of seizure you’re experiencing and which parts of the brain are affected.

Some common symptoms of epilepsy include:

  • a staring spell
  • confusion
  • loss of consciousness or recognition
  • uncontrollable movement, like jerking and pulling
  • repetitive movements

Tests and diagnosis

Diagnosing epilepsy requires several types of tests and studies to ensure your symptoms and sensations are the result of epilepsy and not another neurological condition.

The tests doctors most commonly use include:

  • Blood tests. Your doctor will take samples of your blood to test for possible infections or other conditions that might explain your symptoms. The test results might also identify potential causes for epilepsy.
  • EEG. An electroencephalogram (EEG) is a tool that most successfully diagnoses epilepsy. During an EEG, doctors place electrodes on your scalp. These electrodes sense and record the electrical activity taking place in your brain. Doctors can then examine your brain patterns and find unusual activity, which may signal epilepsy. This test can identify epilepsy even when you’re not having a seizure.
  • Neurological examination. As with any doctor’s office visit, your doctor will want to complete a full health history. They’ll want to understand when your symptoms began and what you’ve experienced. This information can help your doctor determine what tests are needed and what types of treatments may help once a cause is found.
  • CT scan. A computed tomography (CT) scan takes cross-sectional pictures of your brain. This allows doctors to see into each layer of your brain and find possible causes of seizures, including cysts, tumors, and bleeding.
  • MRI. Magnetic resonance imaging (MRI) takes a detailed picture of your brain. Doctors can use the images created by an MRI to study very detailed areas of your brain and possibly find abnormalities that may be contributing to your seizures.
  • fMRI. A functional MRI (fMRI) lets your doctors see your brain in very close detail. An fMRI allows doctors to see how blood flows through your brain. This may help them understand what areas of the brain are involved during a seizure.
  • PET scan: A positron emission tomography (PET) scan uses small amounts of low-dose radioactive material to help doctors see your brain’s electrical activity. The material is injected into a vein and a machine can then take pictures of the material once it’s made its way to your brain.

Treatment

With treatment, around 70 percent of people with epilepsy can go into remission, finding ease and relief from their symptoms.

Treatment might be as simple as taking an antiepileptic medication, although 30 to 40 percent of people with epilepsy will continue to have seizures despite treatment due to medication-resistant epilepsy. Others may require more invasive surgical treatments.

Here are the most common treatments for epilepsy:

Medication

There are more than 20 antiseizure medications available today. Antiepileptic medications are very effective for most people.

It’s also possible you’ll be able to discontinue taking these medications in as early as two to three years, or as much as four to five years.

In 2018, the first cannabidiol drug, Epidolex, was approved by the FDA for the treatment of severe and rare Lennox-Gastaut and Dravet syndromes in children over the age of 2. It’s the first FDA-approved drug to include a purified drug substance from marijuana (and doesn’t induce a sense of euphoria).

Surgery

In some cases, imaging tests can detect the area of the brain responsible for the seizure. If this area of the brain is very small and well-defined, doctors may perform surgery to remove the portions of the brain that are responsible for the seizures.

If your seizures originate in a part of the brain that cannot be removed, your doctor may still be able to perform a procedure that can help prevent the seizures from spreading to other areas of the brain.

Vagus nerve stimulation

Doctors can implant a device under the skin of your chest. This device is connected to the vagus nerve in the neck. The device sends electrical bursts through the nerve and into the brain. These electrical pulses have been shown to reduce seizures by 20 to 40 percent.

Diet

The ketogenic diet has proved effective in reducing seizures for many people with epilepsy, especially children.

More than 50 percent who try the ketogenic diet have more than a 50 percent improvement in seizure control, and 10 percent experience total freedom from seizures.

When to see a doctor

A seizure can be very scary, especially if it’s happening for the first time.

Once you’ve been diagnosed with epilepsy, you’ll learn to manage your seizures in a healthy way. However, a few circumstances may require you or someone near you to seek immediate medical help. These circumstances include:

  • injuring yourself during a seizure
  • having a seizure that lasts more than five minutes
  • failing to regain consciousness or not breathing after the seizure ends
  • having a high fever in addition to the seizures
  • having diabetes
  • having a second seizure immediately after a first
  • a seizure caused by heat exhaustion

You should notify coworkers, friends, and loved ones that you have this condition and help them to know what to do.

Prognosis

A person’s prognosis depends entirely on the type of epilepsy they have and the seizures it causes.

Up to 70 percent of people will respond positively to the first antiepileptic drug prescribed to them. Others may require additional assistance finding a medicine that’s most effective.

After being seizure-free for about two years, 68 percent of people will discontinue medication. After three years 75 percent of people will stop their medication.

Risk of recurrent seizures after the first ranges broadly from 27 to 71 percent.

Worldwide facts

According to Epilepsy Action Australia, 65 million people worldwide have epilepsy. Almost 80 percent of these people live in developing nations.

Epilepsy can be successfully treated, but more than 75 percent of people living in developing nations don’t receive the treatment they need for their seizures.

Prevention

Epilepsy doesn’t have a cure and it can’t be wholly prevented. However, you can take certain precautions, which include:

  • Protecting your head against injury. Accidents, falls, and injuries to the head may cause epilepsy. Wear protective headgear when you’re bicycling, skiing, or engaging in any event that puts you at risk for a head injury.
  • Buckling up. Children should travel in appropriate car seats for their age and size. Every person in the car should wear a seat belt to avoid head injuries that are linked to epilepsy.
  • Guarding against prenatal injury. Taking good care of yourself while you’re pregnant helps protect your baby against certain health conditions, including epilepsy.
  • Getting vaccinated. Childhood vaccinations can guard against diseases that might lead to epilepsy.
  • Maintaining your cardiovascular health. Managing high blood pressure and other symptoms of heart disease can help stave off epilepsy as you age.

Costs

Each year, Americans spend more than $15.5 billion caring for and treating epilepsy.

Direct care costs per patient can range from $10,192 to $47,862 annually. Epilepsy-specific costs per year can cost upwards of $20,000.

Other surprising facts or information

Having a seizure doesn’t mean you have epilepsy. An unprovoked seizure isn’t necessarily caused by epilepsy.

However, two or more unprovoked seizures may signal that you have epilepsy. Most treatments won’t begin until a second seizure has occurred.

Contrary to popular opinion, it’s impossible to swallow your tongue during a seizure — or at any other point in time.

The future for epilepsy treatment looks bright. Researchers believe brain stimulation may help people experience fewer seizures. Small electrodes placed into your brain can redirect electrical pulses in the brain and may reduce seizures. Likewise, modern medications, like the marijuana-derived Epidolex, are giving people new hope.