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Epilepsy

Key facts

  • Epilepsy is a chronic noncommunicable disease of the brain that affects people of all ages.

  • Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally.

  • Nearly 80% of people with epilepsy live in low- and middle-income countries.

  • It is estimated that up to 70% of people living with epilepsy could live seizure- free if properly diagnosed and treated.

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

  • Three quarters of people with epilepsy living in low-income countries do not get the treatment they need.

  • In many parts of the world, people with epilepsy and their families suffer from stigma and discrimination.

  • Epilepsy is a brain disease where nerve cells don’t signal properly, which causes seizures. Seizures are uncontrolled bursts of electrical activities that change sensations, behaviors, awareness and muscle movements. Although epilepsy can’t be cured, many treatment options are available.


What is epilepsy?
Epilepsy is a long-term (chronic) disease that causes repeated seizures due to abnormal electrical signals produced by damaged brain cells. A burst of uncontrolled electrical activity within brain cells causes a seizure. Seizures can include changes to your awareness, muscle control (your muscles may twitch or jerk), sensations, emotions and behavior.


Epilepsy is also called a seizure disorder.


Who does epilepsy affect?


Anyone, of any age, race or sex, can develop epilepsy.


How common is epilepsy?


Around 50 million people worldwide have epilepsy and 2% of Ugandans suffer from epilepsy. Epileptic seizures may be tied to a brain injury or genetics, but for 70 percent of epilepsy patients, the cause is unknown. The Epilepsy Therapy Project notes that 10 percent of people will have seizures in their lifetime.


What happens in your brain when you have epilepsy?

The cells in your brain send messages to and receive messages from all areas of your body. These messages are transmitted via a continuous electrical impulse that travels from cell to cell. Epilepsy disrupts this rhythmic electrical impulse pattern. Instead, there are bursts of electrical energy — like an unpredictable lightning storm — between cells in one or more areas of your brain. This electrical disruption causes changes in your awareness (including loss of consciousness), sensations, emotions and muscle movements.


What are the types of epilepsies and their seizure symptoms?

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.


There are two major seizure groups:


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:

  •  Focal onset aware seizure means you’re awake and aware during the seizure. Healthcare providers once called this a simple partial 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, having a tingling sensation.

  • Focal onset impaired awareness seizure means you’re confused or have lost awareness or consciousness during the seizure. This seizure type used to be called complex partial seizure. Symptoms may include:

    • Blank stare or a “staring into space.”

    • Repetitive movements like eye blinking, lip-smacking or chewing motion, hand rubbing or finger motions.


Generalized onset seizures

General 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.

  • Absence seizures: This seizure type causes a blank stare or “staring into space” (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. This seizure type used to be called petit mal seizures.

  • Atonic seizures: Atonic means “without tone.” An atonic seizure means you’ve lost muscle control or your muscles are weak during your seizure. Parts of your body may droop or drop such as your eyelids or head, or you may fall to the ground during this short seizure (usually less than 15 seconds). This seizure type is sometimes called “drop seizure” or “drop attack.”

  • Tonic seizures: Tonic means “with tone.” A tonic seizure means your muscle tone has greatly increased. Your arms, legs, back or whole body may be tense or stiff, causing you to fall. You may be aware or have a small change in awareness during this short seizure (usually less than 20 seconds).

  • Clonic seizures: “Clonus” means fast, repeating stiffening and relaxing of a muscle (“jerking”). A clonic seizure happens when muscles continuously jerk for seconds to a minute or muscles stiffen followed by jerking for seconds up to two minutes.

  • Tonic-clonic seizures: This seizure type is a combination of muscle stiffness (tonic) and repeated, rhythmic muscle jerking (clonic). Healthcare providers may call this seizure a convulsion, and once called it a grand mal seizure. Tonic-clonic seizures are what most people think of when they hear the word “seizure.” You lose consciousness, fall to the ground, your muscles stiffen and jerk for one to five minutes. You may bite your tongue, drool and lose muscle control of bowels or bladder, making you poop or pee.

  • Myoclonic seizures: This seizure type causes brief, shock-like muscle jerks or twitches (“myo” means muscle, “clonus” means muscle jerking). Myoclonic seizures usually last only a couple of seconds.


As your healthcare provider learns more, your seizure type may change to focal or generalized onset seizure.


What are seizure triggers?

Seizure triggers are events or something that happens before the start of your seizure.


Commonly reported seizure triggers include:

  • Stress.

  • Sleep issues such as not sleeping well, not getting enough sleep, being overtired, disrupted sleep and sleep disorders like sleep apnea.

  • Alcohol use, alcohol withdrawal, recreational drug use.

  • Hormonal changes or menstrual hormonal changes.

  • Illness, fever.

  • Flashing lights or patterns.

  • Not eating healthy, balanced meals or drinking enough fluids; vitamin and mineral deficiencies, skipping meals.

  • Physical overexertion.

  • Specific foods (caffeine is a common trigger).

  • Dehydration.

  • Certain times of the day or night.

  • Use of certain medications. Diphenhydramine, an ingredient in cold, allergy and sleep over-the-counter products, is a reported trigger.

  • Missed anti-seizure medication doses.

  • Stress

  • Sleep deprivation or fatigue

  • Alcohol use or drug abuse


How can I figure out my seizure triggers?
Some people discover that their seizures occur consistently during certain times of the day or around certain events or other factors. You may want to track your seizures — and the events around your seizures — to see if there’s a pattern.


In your seizure diary, note the time of day each seizure happened, the events or special circumstances happening around the time of the seizure and how you felt. If you suspect you’ve identified a trigger, track that trigger to find out if it’s really a trigger. For example, if you think caffeine is a seizure trigger, do you have a seizure after consuming every caffeinated food or beverage, after “x” number of caffeinated foods/beverages or at certain times of day after consuming caffeine? Caffeine may or may not be the trigger when thoroughly reviewed.


Symptoms & Causes

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What are the signs and symptoms of epileptic seizures?

The main symptom of epilepsy is recurring seizures. Your symptoms, however, vary depending on the type of seizure you have.


Seizure signs and symptoms include:

  • Temporary loss of awareness or consciousness.

Uncontrolled muscle movements, muscle jerking, loss of muscle tone.

  • Blank stare or “staring into space” look.

  • Temporary confusion, slowed thinking, problems with talking and understanding.

  • Changes in hearing, vision, taste, smell, feelings of numbness or tingling.

  • Problems talking or understanding.

  • Upset stomach, waves of heat or cold, goosebumps.

  • Lip-smacking, chewing motion, rubbing hands, finger motions.

  • Psychic symptoms, including fear, dread, anxiety or déjà vu.

  • Faster heart rate and/or breathing.


Most people with epilepsy tend to have the same type of seizure, so have similar symptoms with each seizure.


What causes epilepsy?

Most of the time (in up to 70% of cases), the cause of seizures is not known. Known causes include:

  • Genetics. Some types of epilepsy (like juvenile myoclonic epilepsy and childhood absence epilepsy) are more likely to run in families (inherited). Researchers believe that although there’s some evidence that specific genes are involved, the genes only increase the risk of epilepsy, and other factors may be involved. There are certain epilepsies that result from abnormalities that affect how brain cells can communicate with each other and can lead to abnormal brain signals and seizures.

  • Mesial temporal sclerosis. This is a scar that forms in the inner part of your temporal lobe (part of your brain near your ear) that can give rise to focal seizures.

  • Head injuries. Head injuries can result from vehicular accidents, falls or any blow to the head.

  • Brain infections. Infections can include brain abscess, meningitis, encephalitis and neurocysticercosis.

  • Immune disorders. Conditions that cause your immune system to attack brain cells (also called autoimmune diseases) can lead to epilepsy.

  • Developmental disorders. Birth abnormalities affecting the brain are a frequent cause of epilepsy, particularly in people whose seizures aren’t controlled with anti-seizure medications. Some birth abnormalities known to cause epilepsy include focal cortical dysplasia, polymicrogyria and tuberous sclerosis. There’s a wide range of other brain malformations known to cause epilepsy.

  • Metabolic disorders. People with a metabolic condition (how your body obtains energy for normal functions) can have epilepsy. Your healthcare provider can detect many of these disorders through genetic tests.

  • Brain conditions and brain vessel abnormalities. Brain health issues that can cause epilepsy include brain tumors, strokes, dementia and abnormal blood vessels, such as arteriovenous malformations.


Diagnosis & tests


How is epilepsy diagnosed?

Technically, if you experience two or more seizures that weren’t caused by a known medical condition — for example, from alcohol withdrawal or low blood sugar — you’re considered to have epilepsy. Before making a diagnosis, your healthcare provider (or epilepsy specialist) will perform a physical exam, take your medical history and may order blood work (to rule out other causes). They may ask about your symptoms during the seizure and conduct other tests, as well.


Your healthcare provider will ask you or your family member (who’s witnessed your seizure) if you experienced any of the following during a seizure:

  • Muscle jerks.

  • Muscle stiffness.

  • Loss of bowel or bladder control (you peed or pooped during the seizure).

  • Change in breathing.

  • Skin color turned pale.

  • Had a blank stare.

  • Lost consciousness.

  • Had problems talking or understanding what was said to you.


What tests will be done to diagnose this condition?

Tests include:

  • Electroencephalography (EEG): This test measures the electrical activity in your brain. Certain abnormal electrical patterns are related to seizures.

  • Brain scans: Magnetic resonance imaging (MRI) and CT scan to look for such things as tumors, infections or blood vessel abnormalities.


Management & treatment


How is epilepsy treated?

Treatments to control epilepsy include anti-seizure medications, special diets (usually in addition to anti-seizure medications) and surgery.


Anti-seizure medications

Anti-seizure medications can control seizures in about 60% to 70% of people with epilepsy. Anti-seizure medication treatment is individualized. The U.S. Food and Drug Administration (FDA) has approved more than 20 anti-seizure medications for treating epilepsy. Your healthcare provider may try one or more medications, doses of medications or a combination of medications to find what works best to control your seizures.


Choice of an anti-seizure medication depends on:

  • Seizure type.

  • Your prior response to anti-seizure medications.

  • Other medical conditions you have.

  • The potential for interaction with other medications you take.

  • Side effects of the anti-seizure drug (if any).

  • Your age

  • General health.

  • Cost.


Because some anti-seizure medications are linked to birth defects, let your healthcare provider know if you’re pregnant or planning to become pregnant.


If anti-seizure medications don’t control your seizures, your healthcare provider will discuss other treatment options, including special diets, medical devices or surgery.


Diet therapy

The ketogenic diet and the modified Atkins diet — diets high in fat, moderate in protein and low in carbohydrates — are the two most common diets sometimes recommended for people with epilepsy. Diets are mostly recommended for children where medication was not effective and who aren’t candidates for surgery. Low glycemic index diets may also reduce seizures in some people with epilepsy.


Surgery and devices

Your healthcare provider will consider surgery if anti-seizure medications don’t control your seizures, and if your seizures are severe and debilitating. Epilepsy surgery can be a safe and effective treatment option when more than two anti-seizure medication trials fail to control your seizures. It’s important to be evaluated at an epilepsy center to see if you’re a candidate for epilepsy surgery if anti-seizure medications don’t control your seizures.


Surgery options include surgical resection (removal of abnormal tissue), disconnection (cutting fiber bundles that connect areas of your brain), stereotactic radiosurgery (targeted destruction of abnormal brain tissue) or implantation of neuromodulation devices. These devices send electrical impulses to your brain to reduce seizures over time.


Prevention


Can epilepsy be prevented?
Although many causes of epilepsy are out of your control and unpreventable, you can reduce your chance of developing a few conditions that might lead to epilepsy, such as:

  • To lower your risk of traumatic brain injury (from blows to your head), always wear your seatbelt when driving and drive “defensively”; wear a helmet when biking; clear your floors of clutter and power cords to prevent falls; and stay off ladders.

  • To lower your risk of stroke, eat a healthy diet (such as the Mediterranean diet), maintain a healthy weight and exercise regularly.

  • Seek therapy for substance abuse. Alcohol and other illegal drugs can damage your brain, which can then lead to epilepsy.


Outlook / Prognosis


Is there a cure for epilepsy?
There’s no cure for epilepsy. But there are many options to treat epilepsy.


Will I always have seizures?
About 70% of people become seizure-free with proper treatment within a few years. The remaining 30% are considered to have drug-resistant epilepsy. These people should go to an epilepsy center to determine if they’re candidates for epilepsy surgery.


How long will I have to take anti-epileptic medications?

It depends on the type of epilepsy you have and your response to medication. Some people who remain seizure-free for several years may be able to stop their medication. Your healthcare provider makes this decision. They’ll consider a variety of factors when making this decision, including an absence of brain lesions on your MRI, EEG findings and your medical history. Some people may require life-long medication.


Living with


When should i see my doctor? When should i go to the emergency room?

See your primary healthcare provider if you’ve never had a seizure before and think you’ve had one — or the people around you tell you you’ve “zoned out” or lost awareness. You may be referred to a neurologist for additional follow-up and testing.


Call +256 709 756 635 if you’ve had a seizure that lasts longer than five minutes or a series of seizures in a row without recovery.


How can I manage my seizures?
To help manage your seizures:

  • Take your medications exactly as prescribed by your healthcare provider. If you miss a dose, call your healthcare provider right away.

  • Get an adequate amount of sleep (typically seven to nine hours a night).

  • Manage your stress. Stress causes the release of certain chemicals in the areas of your brain more prone to seizures. To reduce your stress, try yoga, meditation, deep breathing exercises, biofeedback or other relaxation methods.

  • Exercise regularly (about 30 minutes a day, five days a week).

  • Avoid excessive alcohol use.

  • Tell all your healthcare providers you have epilepsy. Check with your healthcare provider who manages your epilepsy if another doctor prescribes additional medications (to treat other health issues). Some medications, including antidepressants, antihistamines and stimulants, can interfere with the effectiveness of your anti-seizure drugs or cause side effects.

  • Always tell your healthcare provider who’s managing your epilepsy about all the products you take, including over-the-counter medications, vitamins and supplements, and herbal products.

  • Identify and avoid your seizure triggers.

  • Eat a healthy diet.


Can I drive if I’ve been diagnosed with epilepsy?

Ask your healthcare provider if you can drive. Generally, you shouldn’t drive until your seizures are under control.


What are the life-threatening complications of epilepsy?

Seizures can lead to serious physical injuries. In addition, life-threatening conditions associated with epilepsy include status epilepticus and sudden unexplained death in epilepsy (SUDEP).


Status epilepticus

Status epilepticus is a long-lasting (five to 30 minutes) seizure or seizures that occur close together without time to recover between them. It’s considered a medical emergency.

 

Emergency treatment at a hospital may include:

  • Medications, oxygen and intravenous fluids.

  • Placement (with anesthetics) into a coma to stop the seizures.

  • EEG monitoring to determine response to treatment.

  • Tests to discover the cause of the seizure.


Sudden unexplained death in epilepsy (SUDEP)
Sudden unexplained death in epilepsy (SUDEP) is a rare condition in which an otherwise healthy young-to-middle-aged person with epilepsy dies without a clear cause. The person often dies at night or during sleep without witnesses. Researchers believe some of the causes might include:

  • Irregular heart rhythm. Seizures may cause a serious heart rhythm problem or cardiac arrest.

  • Breathing difficulty. If breathing stops (for example, due to sleep apnea), lack of oxygen to your heart and brain can be life-threatening. Also, sometimes airways can get blocked during a convulsive seizure, which could cause suffocation.

  • Inhaling vomit. Inhaling vomit during or after a seizure can block your airway.

  • Brain function interference. A seizure might interfere with areas of your brain that control breathing and heart rate.


About 1 in 1,000 people with epilepsy die from SUDEP each year. It’s the leading cause of death in people with uncontrolled seizures. Ways to reduce your risk of SUDEP include knowing and avoiding your seizure triggers, taking your medications as directed by your healthcare provider and following general healthy living practices (be well-rested, exercise, eat healthy foods, avoid smoking and avoid drinking too much or using recreational drugs).


Most women with epilepsy can become pregnant, but they should discuss their epilepsy and the medications they are taking with their doctors before getting pregnant. Many patients with epilepsy take high doses of medication that may lead to potentially harmful drug exposure to unborn babies. In some cases, medications may be reduced before pregnancy, particularly if seizures are well-controlled. While seizure medications can produce birth defects, severe birth defects are rare in infants of women who receive regular prenatal care and whose seizures are carefully managed. Women with epilepsy have a 90 percent or better chance of having a normal, healthy baby.


Epilepsy is a chronic condition that affects people in different ways. Many people with epilepsy lead normal, active lives. Between 70 and 80 percent of people with epilepsy can successfully control their seizures through medication or surgical techniques.


Some people find that they rarely have to think about epilepsy, except when taking their medications or going to see the doctor. No matter how epilepsy affects a person, it is important to remember that being well-informed about the condition and keeping a positive attitude are important. Working closely with a healthcare team and adhering to prescribed medications are essential to helping control seizures so that the patient can lead a full, balanced life.


Frequently asked questions


What’s the difference between convulsions, seizures and epilepsy?


A convulsion involves uncontrolled, jerky muscle movements and altered consciousness. But people often use the terms convulsion and seizure interchangeably. People also tend to use the word convulsion to refer to a tonic-clonic seizure.


Seizures result from abnormal electrical activity from cells in your brain. You can have a seizure without having any symptoms. Healthcare providers refer to this as an EEG seizure (picked up during EEG tests). Most of the time, seizures present with a variety of different symptoms that are described above. Seizures are a symptom of epilepsy, but not all seizures are caused by epilepsy.


Epilepsy is a neurological disease defined by having multiple, ongoing seizures. Epilepsy can be a life-long condition.


A note from Pan Medical Kampala

Epilepsy is a fairly common condition and there are many treatment options, including anti-seizure medications, special diets, epilepsy surgeries and devices to stop the seizures. The goal is to manage seizures as best as possible. In some cases, epilepsy is a life-long disease. In others, seizures might stop with proper treatment. You can play a part in better managing your seizures. Get an adequate amount of sleep, limit alcohol intake, eat a healthy diet, avoid your seizure triggers and take your medications exactly as directed by your healthcare provider.

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