Living with
Epilepsy

What is epilepsy?

Epilepsy, also known as “seizure disorders,” is a chronic condition characterised by abnormal, excessive electrical activity in the brain that leads to recurrent, unprovoked seizures.

It is important to differentiate between seizures and epilepsy though, as they are not the same thing. A seizure is a temporary event where you may experience periods of unusual behaviour, movements, sensation, feelings and sometimes loss of awareness; whereas epilepsy is a condition predisposing you to recurrent seizures.
Generally, you must have at least two unprovoked seizures more than 24 hours apart to be diagnosed as having epilepsy.

Anyone can develop epilepsy; however, the condition is usually more common in young children or older adults and is slightly more common in men.

While there is no cure for epilepsy, for most people, treatment with medications can control their seizures. Some people may require lifelong treatment, but for some young children and others, the seizures eventually go away.

How do you know you have epilepsy?

You are more likely to be diagnosed with epilepsy if you are very young, with the risk of developing epilepsy highest in the first year of life, gradually decreasing to age 10 years.
After 55 years of age, the risk increases again as age-related causes, such as Alzheimer’s disease and stroke, increase.

The location of the abnormal activity in the brain and how much of the brain is affected determines the symptoms, extent and duration of the seizure.
Symptoms of seizure may differ widely between people with epilepsy, and can include:

• Temporary confusion
• Short periods of time where you stare blankly into space, unaware of your surroundings and unresponsive to normal stimuli
• Changes to sensation like taste, smell, sight, hearing or touch (“aura”)
• Dizziness
• Uncontrollable, jerking or ‘twitching’ muscle movements, usually in the arms and legs
• Loss of consciousness
• Psychic symptoms such as a sense of fear and anxiety or experiencing déjà vu (the feeling that a new event has happened before)

Symptoms vary depending on the type of seizure, but if you have been diagnosed with epilepsy you will likely experience the same type of seizure each time (meaning the symptoms will be similar every time you have a seizure).

Following a seizure, you may not even remember having one and you may feel slightly ill for a few hours.

When to see your doctor?

Seek immediate medical attention if:

• You experience a seizure for the first time
• You have a seizure that lasts more than five minutes or if there is a second seizure immediately after
• Breathing or consciousness doesn’t return to normal after the seizure stops
• You have a high fever
• You are pregnant
• You have diabetes
• You have injured yourself during a seizure.

What are the different types of epilepsy?

Doctors generally classify seizures into two main types. Focal, or partial seizures, affect just one part of the brain, while generalised seizures affect the whole brain.

Focal seizures fall into two categories:

• Seizures where you don’t lose consciousness (once called simple partial seizures). You may experience altered emotions or sensation (things might look, smell, feel, taste or sound different). There may also be dizziness and tingling and twitching of your limbs with these type of seizures.
• Focal seizures with loss of awareness or consciousness (once called complex partial seizures). With this type of seizure, staring blankly into space, being unresponsive and performing repetitive movements may occur.

Generalised seizures fall into six categories:

• Absence seizures (previously known as petit mal seizures), often occur in children causing a brief loss of awareness, usually accompanied by a blank stare and/or subtle repetitive movements like blinking or lip smacking.
• Tonic seizures cause your muscles to stiffen, meaning you may fall to the ground.
• Atonic seizures, or drop seizures, cause a loss of muscle control and can make you suddenly collapse or fall down.
• Clonic seizures are associated with repeated, jerky muscle movements, usually in the neck, face and arms.
• Myoclonic seizures usually appear suddenly with spontaneous, brief twitching of your arms and legs.
• Tonic-clonic seizures (previously known as grand mal seizures) are the most dramatic type of seizure, of which symptoms can include:
  • Stiffening of your body or shaking
  • Loss of bladder control
  • Biting your tongue
  • Sudden loss of consciousness.

How is epilepsy diagnosed and when can it be considered resolved?

Your doctor may diagnose you mainly on the criteria that you have at least two unprovoked seizures occurring more than 24 hours apart.
An unprovoked seizure is that which is not caused by reversible medical conditions like hypoglycaemia or alcohol withdrawal.

Your doctor will take a full family history and clinical history and will do a full physical examination to determine whether you have epilepsy. Usually an EEG (electroencephalogram) is also performed to help diagnose epilepsy.

Epilepsy is considered to be resolved if you have remained seizure-free for the last 10 years, with no seizure medicines for the last five years.

What causes epilepsy?

According to Epilepsy South Africa, epilepsy affects about 1 in 100 South Africans, or some half a million people in the country. There are an estimated 50 million people living with epilepsy worldwide.

For some 50-60 % of people, the cause of their epileptic seizures may never be identified. However, the most common causes, include:

• Genetic influences: In the general population, there is an almost one percent chance of developing epilepsy before you turn 20 years of age; however, if you have a parent with epilepsy, that increases your risk to 2-5 %. While there may be more than 500 genes associated with epilepsy, for most people genes are only part of what causes their seizures. Your genes may make you more susceptible to seizures caused by environmental triggers or decrease your “natural seizure threshold”.
• Traumatic brain injury or head trauma: This may include injury from a fall or blow to the head in a car accident, for example.
  Seizures can occur early after the injury, for example, within days to the first few weeks of the initial trauma. These seizures are usually the result of the bleeding, trauma or swelling of the brain from the initial event and may go away as the injury resolves.
  However, sometimes seizures can occur a significant period after the acute injury occurred and resolved. These seizures are caused by scarring to the brain from the initial injury, meaning the damaged brain cells will not work as they did before. When seizures like this occur independently from an initial brain injury, a person is said to have post-traumatic epilepsy, a condition most common in people involved in the armed forces.
• Serious illness with a high fever
• Brain masses: Brain tumours, abscesses or cysts can cause epilepsy.
• Stroke: Stroke is the leading cause of epilepsy in adults older than age 35 years.
• Infectious diseases: Infections, such as meningitis, HIV and viral encephalitis, can cause epilepsy.
• Prenatal injury: This means a baby sustains brain damage before or during birth when they are very susceptible. Prenatal brain damage can be caused by several factors, such as maternal infection or drug use, poor nutrition or an oxygen deficiency (hypoxia) during birth which can cause epilepsy or cerebral palsy.
• Developmental disorders: Epilepsy can sometimes be associated with certain neurological and developmental disorders, such as autism and neurofibromatosis.
• Dementia: Such as caused by Alzheimer’s disease.
• Any period of sustained poor oxygen supply to the brain.
• Neurovascular disease: This is where the arteries supplying the brain may be abnormal.
• Illicit drug use: Such as with cocaine.

Certain factors may increase your risk of epilepsy:

• Age: Epilepsy is most common in children and in adults over 55 years.
• Family history: If you have a family history of epilepsy, you may be at an increased risk.
• Vascular diseases: These conditions increase your risk of stroke which can cause epilepsy.

What can trigger an epileptic seizure?

You may be able to identify certain things or situations that trigger or bring about your seizures.

Commonly reported triggers include:

• Lack of sleep
• Illness or fever
• Stress
• Photosensitivity (bright or flashing lights, or patterns)
• Stimulants such as caffeine, certain medicines or recreational drugs
• Alcohol
• Skipping or missing your anti-epileptic medication
• Skipping meals, overeating or eating a specific type of food.

Identifying triggers can be difficult, as a single incident doesn’t always mean something is a trigger and sometimes it is a combination of the above factors that triggers a seizure.

Living and managing

Epilepsy can affect many parts of your life. For example, depending on how severe your seizures are, you may not be legally able to drive. You may also be at risk of hurting yourself during a seizure. You can work with your doctor to manage your seizures.

Some tips to managing your epilepsy include:

• Take your medication regularly: Most people living with epilepsy can avoid seizures by taking their anti-epileptic (or anticonvulsant or antiseizure) medication prescribed by their doctor regularly.
• Have a plan for if you experience a seizure: Consider wearing a medical alert bracelet to let people know that you experience seizures because of epilepsy. Make sure the people around you (your family or the people you live with) know what to do if you have a seizure.
• Have a system to keep track of your seizures and triggers: A good way to identify your triggers and to assess how well your medication is managing your seizures is to keep a seizure journal. To do this, after each seizure, note the following:
• Avoid triggers and stay generally healthy: This includes eating a healthy, well-balanced diet, staying physically active, getting enough sleep, managing stress and avoiding excessive or regular alcohol consumption.
  You may also want to manage your intake of coffee and other caffeinated substances and avoid smoking. Tobacco smoke contains nicotine which is a stimulant that can bring about seizures.

What treatment is available for epilepsy and seizures?

Anti-epileptic medication, or anticonvulsants, can prevent seizures from happening.
Most people with epilepsy can become seizure-free by taking one anti-seizure medication, with at least half of people newly diagnosed with epilepsy becoming seizure-free with their first medication. Others may have to take a combination of anti-epileptic medications to decrease the frequency and severity of their seizures.

Many children with epilepsy can eventually discontinue medications and live a seizure-free life as they grow up; similarly, adults can become seizure-free and may no longer require medication (in consultation with their doctor).

When prescribing your medication, your doctor will consider many factors, like your general health, age and the frequency and severity of your seizures. You must also tell your doctor about any other medication you may be taking to ensure your anti-epileptic medications will not interact with them. Your doctor will likely first prescribe a single medication at a relatively low dose, increasing the dose gradually if your seizures do not approve.

Anti-seizure medications may have some side effects, which can include fatigue, dizziness, weight gain, loss of coordination, problems with normal speech or problems with memory and concentration. However, more severe, but rare, side-effects include depression, suicidal thoughts and behaviours, severe rash or inflammation of the liver.
Never stop taking your medication without talking to your doctor first, even if you experience side-effects, but notify your doctor immediately if you notice new or increased feelings of depression, suicidal thoughts or changes in your mood.

It is important that you take your medications exactly as your doctor prescribes and always call your doctor before switching your medication or taking other prescription medications. Have regular follow-up visits with your doctor to assess how your seizures are being managed.

The active ingredient names of common epilepsy medications are:

• Levetiracetam
• Lamotrigine
• Topiramate
• Valproic acid
• Carbamazepine.

These medications are available in different forms (tablet, injection or liquid) and are either taken once or twice a day.

If medications fail to provide adequate control of your seizures, your doctor may suggest surgery.
With epilepsy surgery, a surgeon removes the small, well-defined area of your brain that is causing your seizures, without interfering with the parts of the brain that control vital functions like speech, vision or hearing.
You may still need to take some anti-epileptic medication after surgery, but it will likely be less that you were taking before surgery.
In a small number of cases, epilepsy surgery can cause complications, so talk to your surgeon about this risk.

Apart from medications and surgery, some potential therapies for treating epilepsy include:

• Vagus nerve stimulation: Here, doctors implant a device called a stimulator underneath the skin of your chest like a heart pacemaker. Wires from the stimulator connect to the vagus nerve in your neck, sending electrical pulse through the nerve to your brain. You may still need to take anti-epileptic medication even if you have a stimulator in place and there are some side-effects of the stimulator that you will need to talk to your doctor about.
• Ketogenic diet: Some children with epilepsy have been able to reduce their seizures by following a strict diet that is low in carbohydrates and generally high in fats. The aim of this diet is for the body to break down fats instead of carbohydrates for energy.
  Consult a doctor if you or your child is considering a ketogenic diet. You have to make sure to eat enough to stay well-nourished and to avoid side-effects like dehydration, constipation and kidney stones that can occur with this type of diet. These side effects are uncommon if the diet is properly and medically supervised by your doctor.
• Deep brain stimulation: Here, a surgeon implants electrodes into a specific part of your brain, typically your thalamus, to connect to a generator implanted in your chest or your skull that sends electrical impulses to your brain.

What should you do if someone is having a seizure?

Most people with epilepsy who have a seizure will be fine, but there are certain steps you must follow to help them:

1. Stay with the person until they are completely awake and alert after the seizure. Time the seizure and check if the person is wearing a medical alert bracelet or if they have another form of medical information on them (like a medical aid card, for example).
2. Make sure the person is in a safe place, free from harm during and after the seizure.
3. Turn the person onto their side if they are not awake and aware during the seizure. Keep their airway clear and loosen tight clothes around their neck or chest. You can also put something small and soft underneath their head.
4. Call emergency services if:

• • The seizure lasts longer than five minutes
  • The person seems not to have returned to their normal state mentally or physically after the seizure
  • The person is injured, sick or pregnant
  • The person has more seizures immediately after the initial seizure
  • The person is having difficulty breathing
  • The person has never had a seizure before
  • The seizure is occurring in water.

Always remain calm and do NOT restrain anyone who may be suffering a seizure or put anything in their mouth.

What are the complications of epilepsy?

Having a seizure at certain times could put you or others around you in harm. Such circumstances include, but are not limited to:

• Falling: You can break a bone or suffer other injuries in this way.
• Drowning: If you have epilepsy you are 15 to 19 times more likely to drown while swimming or bathing compared to the general population. Never swim unsupervised or alone.
• Car accidents if you are driving and have a seizure.
• Pregnancy complications: Seizures during pregnancy can pose dangers to both the mother and baby. Additionally, certain anti-epileptic medications increase the risk of birth defects.
  If you have epilepsy and are considering becoming pregnant, talk to your doctor first. Most women with epilepsy can have a healthy pregnancy and birth, with no harm to their baby, but they will need to be carefully monitored during pregnancy and the birth process.
• Mental health issues: People with epilepsy are more likely to suffer mental health conditions, especially depression and anxiety. You may experience difficulties dealing with the condition itself as well as any side-effects of your medications.

Other life-threatening complications of epilepsy are uncommon, but include:

• Status epilepticus: If you suffer a seizure for five minutes or longer you are at increased risk of brain damage and death.
• Sudden unexpected death in epilepsy (SUDEP): Very few people with epilepsy may have a small risk of sudden unexpected death of unknown cause.