Everything You Need To Know About Epilepsy

According to the Centers for Disease Control and Prevention, the number of children and adults living with epilepsy is rising¹. Over 3.4 million people in the US (3 million adults and 470,000 children) live with an active form of epilepsy.  This accounts for 1.2% of the population. 

The World Health Organization estimates that more than 50 million people² worldwide live with epilepsy.

Recent clinical data also show that 0.6% of all children aged 0–17 in the US live with active epilepsy. This means that 6 in every 1,000 children³ could have a seizure disorder.

Up to 80% of people with active epilepsy live in low- to middle-income countries. Without adequate access to quality healthcare and treatments, they are more likely to experience more profound and debilitating symptoms of the disorder.

While the specific epilepsy symptoms a person can experience will depend on the area(s) of their brain affected, some of the most common symptoms of tonic-clonic seizures¹ include:

• Stiffness and rigidity throughout the body

• Loss of muscle tone and control

• Uncontrollable jerking motions of the limbs

• Repetitive movements like lip smacking or blinking

• Biting of the tongue

• Frothing at the mouth

• Loss of bowel and bladder control

• Sudden onset of confusion and disorientation

• Staring forward blankly

• Loss of consciousness and lack of awareness of the event

Not all seizures require emergency medical attention. Depending on the type, location, duration, and the person’s epilepsy history, seizure episodes can often be managed in the home setting. 

However, if you are with someone who has never had a seizure or has epilepsy and is experiencing an episode lasting longer than a few minutes, call emergency services for immediate support and medical attention.

Complications of epilepsy

If left untreated, epilepsy may cause significant health complications that can have a negative impact on your quality of life. Depending on the severity and quality of seizures that you experience, examples of epilepsy complications can include:

• Lifelong difficulty learning and increased risk of being diagnosed with a learning disability

• Mood irregularities, such as depression and anxiety

• Injuries from seizure-related falls, including bruises, cuts, bone fractures, and self-inflicted bite wounds

• Aspiration (inhaling food, water, or even saliva into the lungs) during an episode can result in a risk of developing aspiration pneumonia

• Damage to areas in the brain from repeat seizures and increased risk of stroke

Unfortunately for many people with epilepsy, it has no clear identifiable cause in about half of all diagnosed cases. In the other 50% of cases, some of the most common causes can include the following:

Head trauma and injury 

Trauma to healthy brain tissue can increase your risk of experiencing recurrent seizures. You can develop epilepsy after a traumatic event like a car accident that causes a serious head injury. 

Autoimmune disorders

Autoimmune epilepsy is a condition that arises due to changes in the immune system. Unable to discern the difference between foreign particles and our brain tissue, immune cells attack and damage your brain tissue, increasing your risk of experiencing a seizure.

Structural brain abnormalities

Malformations of your brain tissue or blood vessels can increase the risk of developing epilepsy. Additionally, people who have previously suffered a stroke are at an increased risk of seizures. 

Infections

Viral, bacterial, and parasitic infections are believed to be the most common cause of epilepsy worldwide. Infections such as malaria, HIV, and meningitis are also associated with an increased risk of developing this condition.

Fetal injury

Life-changing injuries to brain tissue that can occur before a baby is born can increase their risk of developing epilepsy during their lifetime. Prenatal infections, poor nutrition, and lack of oxygen before or during delivery are all potential causes of epilepsy.

Is epilepsy genetic?

In some cases, epilepsy can be caused by genetic abnormalities. 

However, it is important to emphasize that just because a person was born with a genetic predisposition for seizures does not mean they will develop epilepsy or that it was passed on from one of their parents.

Risk factors of epilepsy

Aside from your genetic makeup, other identifiable risk factors could increase your chances of developing a seizure disorder. Some of the most common epilepsy risk factors include:

• Age (most prevalent in adolescents and young adults)

• Dementia

• Family history

• Stroke or other major vascular events

Seizure triggers

While people with epilepsy can experience a seizure without a specific trigger, it is also possible for people with this diagnosis to develop seizures due to changes in their surrounding environment or physical health. 

People with epilepsy will often note patterns for when their seizures are more likely to occur. Some of the most common seizure triggers include:

• Sleep deprivation

• A high fever

• Flashing bright lights and repetitive patterns

• Eating specific foods (dependent from person to person) or missing meals

• Alcohol withdrawal

• Cocaine use

• Chronic high levels of stress

• Hormonal changes (including changes due to the menstrual cycle)

• Missing medication doses

• Profound malnutrition or dehydration

Diagnosing epilepsy

If you suspect that you or someone you love has recently experienced a seizure for the first time, you should seek medical attention. Because various severe medical conditions can cause seizures, getting evaluated by a medical professional is essential for your health and safety.

Depending on your medical history and the specifics of your seizure, your doctor will run various diagnostic tests to determine the root cause. 

After obtaining your history and performing a physical exam that includes a neurological assessment, your clinician may order blood work and other diagnostic tests to detect other causes of seizures. 

Examples of common diagnostic studies used for evaluating seizures and diagnosing epilepsy include:

Electroencephalogram (EEG)

An EEG can record electrical patterns within the brain using small and painless electrodes placed on your head. This type of monitoring can identify abnormal electrical activity and is most frequently used in diagnosing epilepsy.

Magnetic resonance imaging (MRI)

As one of the most common forms of neuroimaging used in evaluating seizures, MRI creates a detailed image of your brain tissue. This modality can be used to diagnose abnormalities that could increase your risk of developing epilepsy.

Computed tomography (CT) scan

A CT scan is another form of neuroimaging performed after a seizure. It can be helpful to quickly rule out causes of seizures, such as a hemorrhagic stroke or bleeding in the brain from a head injury. 

Is there a cure for epilepsy?

While various effective medications and surgical interventions are available to help manage symptoms, there is no definitive cure for epilepsy. 

Despite this, getting access to the appropriate medical care needed to manage symptoms can dramatically impact your quality of life and overall health.

Receiving treatment for epilepsy can help you experience fewer seizures or may even stop them altogether.

When you meet with your primary care physician or specialist, they will create a treatment plan based on:

• The type of epilepsy you have and its cause (if known)

• The frequency and severity of your seizures

• Your overall health and comorbidities

• How well you respond to specific treatments

Currently, some of the most commonly used epilepsy treatment options include medications, vagus nerve stimulation, and surgery.

Medications for epilepsy

If you have been newly diagnosed with epilepsy, your doctor will likely start you on an antiseizure medicine as a first-line treatment. This medication is used to prevent the frequency and severity of seizure activity but not to stop an active seizure as it occurs.

Most antiseizure medicines are taken orally and absorbed through the stomach. You may be required to take more than one drug, depending on your epilepsy symptoms and response to the medicine.

Common antiseizure drugs include:

• Topiramate (Topamax)

• Valproic acid (Depakote)

• Levetiracetam (Keppra)

• Lamotrigine (Lamictal)

• Ethosuximide (Zarontin)

• Carbamazepine (Tegretol)

Like all medications, antiseizure drugs can cause side effects that must be monitored and reported. Some more common and milder effects occur when you start taking the medicine but improve after a few weeks. Others are more severe or sustained. 

You should speak with your prescribing physician if you develop any side effects while taking antiseizure medications. They may adjust the dosage or medication type to fit your needs.

Here are the side effects to look out for:

• Fatigue

• Dizziness and lightheadedness

• Digestive upset

• Development of a skin rash

• Poor coordination

• Memory problems

• Blurred vision

Additionally, a new area of research called pharmacogenetic testing¹ is being conducted to determine the effects of genetic factors on how effective medication can be. These tests are being done on people with known epilepsy to learn how to predict better the medications best suited to treat their condition. 

Depending on how you respond to your prescribed medications, your neurologist may recommend this testing as part of your treatment plan.

Epilepsy medication and pregnancy

For those with epilepsy who are considering becoming pregnant, it is crucial to understand that some antiseizure medications can impact the baby’s health in utero². Some examples of possible congenital disabilities that antiseizure drugs can cause include:

• Cleft palate abnormalities

• Neural tube defects

• Skeletal abnormalities

• Congenital heart defects

• Developmental delays

Whenever possible, it is advised for women with epilepsy to speak with their clinician about the safety of their treatment plan before becoming pregnant.

While it may be essential for them to remain on some form of treatment, dosing changes and possible medication switches can be made to allow for the safest possible pregnancy for her and the baby.

Vagus nerve stimulation

For people who do not respond well to antiseizure medications and are not considered safe surgical candidates, vagus nerve stimulation is often tried as the next-in-line therapy option. 

Electrical impulses are sent along the nerve to various brain areas using an implantable device connecting to the left vagus nerve. This has been proven to reduce the number of seizures and was approved by the FDA³ in 1997.

Surgery for epilepsy

In more severe cases, when a person does not respond well to medications and vagus nerve stimulation, surgical interventions may be indicated to reduce seizure activity. Some of the most common surgical options for epilepsy include:

Resection

Surgical resection involves removing a portion of the brain where your seizure activity most commonly originates. Sometimes, patients remain awake during this procedure to collaborate with the surgical team.

Multiple subpial transections

If the primary seizure activity originates from an area of the brain that cannot be resected, the surgical team may conduct multiple subpial transections⁴. They will disconnect the nerve pathways and prevent seizure activity from spreading to other brain areas.

Dietary changes for managing epilepsy

In addition to the abovementioned treatment options, your doctor may suggest various lifestyle changes to manage your epilepsy symptoms better. One of them is following a ketogenic diet. 

Defined as a low-carbohydrate, high-fat diet, a ketogenic diet⁵ is challenging to maintain and requires constant monitoring. However, for those with drug-resistant epilepsy, the benefits may be worth the effort it takes to stay on a diet. 

While the exact mechanism of action for the formation of many seizures is unknown, the ketogenic diet has proven to be an effective option for the long-term management of epilepsy. One large study showed a 50% reduction in seizure activity in up to 90% of patients⁶ who ate a ketogenic diet for 12 consecutive months.

If you or someone you know is interested in exploring the ketogenic diet as a treatment option for epilepsy, speak with your primary doctor or neurologist before making dietary adjustments.

First aid for seizures

If you happen to be with someone experiencing an active seizure, there are some things you can do to provide support and ensure their safety until it resolves. 

If the individual is having a focal seizure, you should:

• Stay with them

• Ask them if they have experienced this type of seizure before or check for a medical emergency bracelet

• Stay calm and keep those around you calm

• Once it is completed, take them to a safe place

• Ask if they want to be taken to a medical facility or need help getting home

If the person is having a more severe tonic-clonic seizure, you should:

• Help the person to the ground as safely as possible

• Clear the surrounding space of objects and people

• Turn them on their side to help keep their airway clear

• Loosen their clothing and remove accessories or glasses

• Do not place anything in their mouth but monitor their breathing throughout the event

• Time the seizure and call emergency services

It is important to know that you should never try to hold anyone down on the ground, offer mouth-to-mouth, or give them food or water while they are having a seizure. 

Stay with the person until the episode resolves, and call emergency services if it does not stop after a few minutes, they have signs of difficulty breathing or low oxygen, or they don’t regain consciousness.

For those living with epilepsy, staying in contact with your primary care clinician at least once a year and seeing your neurologist as often as recommended is essential to maintain your overall health and safety.

Between appointments, things that you can do to monitor and support your epilepsy include:

• Keeping a diary of seizure events and medications

• Monitoring for potential triggers and avoiding them when possible

• Wearing a medical alert bracelet

• Training those closest to you on how to identify and assist you during an episode

• Living a healthy and balanced lifestyle