Frequently Asked Questions About Epilepsy

What is epilepsy? What is a seizure?

Epilepsy, which is sometimes called a seizure disorder, is a disorder of the brain. A person is diagnosed with epilepsy when they have had two or more seizures.

A seizure is a short-lasted change in normal brain activity.

Seizures are the main sign of epilepsy. Some seizures can look like staring spells. Other seizures cause a person to fall, shake, and lose awareness of what’s going on around them.

How long do seizures usually last?

Usually, a seizure lasts from a few seconds to a few minutes. It depends on the type of seizure.

What are the major types of seizures?

Sometimes it is hard to tell when a person is having a seizure. A person having a seizure may seem confused or look like they are staring at something that isn’t there. Other seizures can cause a person to fall, shake, and become unaware of what’s going on around them.

Seizures are classified into two groups.

• Generalized seizures affect both sides of the brain.
• Focal seizures affect just one area of the brain. These seizures are also called partial seizures.

A person with epilepsy can have more than one kind of seizure.

If I have a seizure, does that mean I have epilepsy?

Not always. Seizures can also happen because of other medical problems. These problems include:

• A high fever.
• Low blood sugar.
• Alcohol or drug withdrawal.

What causes epilepsy?

Epilepsy can be caused by different conditions that affect a person’s brain.

Some known causes include:

• Stroke.
• Brain tumor.
• Brain infection from parasites (malaria, tuberculosis), viruses (influenza, dengue, Zika), and bacteria.
• Traumatic brain injury or head injury.
• Loss of oxygen to the brain (for example, during birth).
• Some genetic disorders (such as Down syndrome).
• Other neurologic diseases (such as Alzheimer’s disease).

For 2 in 3 people, the cause of epilepsy is unknown. This type of epilepsy is called cryptogenic or idiopathic.

What triggers seizures?

Triggers vary from person to person.  Some people with epilepsy can very clearly identify situations that trigger a seizure, while others are unable to find a pattern to their seizures. A common way to identify seizure triggers is to keep a seizure record that includes tracking what happens before each seizure.

Common triggers include:

• Missed doses of anti-seizure medication (most common trigger)
• Lack of sleep or fatigue
• Stress or excitation
• Elevated body temperature
• Colds, flu or some kinds of infection
• Hormonal changes during the menstrual cycle
• Alcohol
• Flashing lights or contrasting patterns (photosensitivity), but only in about 5% of all people with epilepsy

How can I prevent epilepsy?

Sometimes we can prevent epilepsy. These are some of the most common ways to reduce your risk of developing epilepsy:

Have a healthy pregnancy. Some problems during pregnancy and childbirth may lead to epilepsy.

• Follow a prenatal care plan with your health care provider to keep you and your baby healthy.
• Prevent brain injuries.
• Lower the chances of stroke and heart disease.
• Be up-to-date on your vaccinations.

How is epilepsy diagnosed?

A person who has a seizure for the first time should talk to an adult/pediatric Neurologist. The Neurologist will talk to the person about what happened and look for the cause of the seizure. Many people who have seizures take tests such as brain scans for a closer look at what is going on. These tests do not hurt.

How is epilepsy treated?

There are many things a provider and person with epilepsy can do to stop or lessen seizures.

The most common treatments for epilepsy are:

Medicine.  Anti-seizure drugs are medicines that limit the spread of seizures in the brain. A health care provider will change the amount of the medicine or prescribe a new drug if needed to find the best treatment plan. Medicines work for about 2 in 3 people with epilepsy.

Surgery.  When seizures come from a single area of the brain (focal seizures), surgery to remove that area may stop future seizures or make them easier to control with medicine. Epilepsy surgery is mostly used when the seizure focus is in the temporal lobe of the brain.

Other treatments. When medicines do not work, and surgery is not possible, other treatments can help. These include vagus nerve stimulation, where an electrical device is placed, or implanted, under the skin on the upper chest to send signals to a large nerve in the neck. Another option is the ketogenic diet, a high fat, low carbohydrate diet with limited calories.

Who treats epilepsy?

Many kinds of health providers treat people with epilepsy. Adult and pediatric neurologist and Physicians can treat people with epilepsy.

Primary care providers such as family physicians, pediatricians, are often the first people to see a person with epilepsy who has new seizures.  If someone has had a new seizure, they would refer you to an adult or pediatric neurologist.

A neurologist is a doctor who specializes in treatment of diseases of the brain and nervous system.

People who have seizures that are difficult to control or who need advanced care for epilepsy may be referred to an epilepsy center (National Hospital of Sri Lanka)

Epilepsy centers are staffed by providers who specialize in epilepsy care, such as

• Neurologists
• Neurophysiologists
• Neuroradiologists
• Neurosurgeons
• EEG technicians

What can I do to manage my epilepsy?

Self-management is what you do to take care of yourself. You can learn how to manage seizures and keep an active and full life. Begin with these tips:

• Take your medicine.
• Talk with your doctor or nurse when you have questions.
• Recognize seizure triggers (such as flashing or bright lights).
• Keep a record of your seizures.
• Get enough sleep.
• Lower stress.

What are Febrile convulsions?

Febrile convulsions are epileptic fits occurring in relation to fever in children aged between 6 months and 5 years. The convulsion is usually brief and lasts for a few seconds to about a minute.

How common are Febrile convulsions?

It should be remembered that almost 3% of all children will have one febrile convulsion. Most febrile convulsions occur in children between the ages of 1 – 2 years. It is estimated that almost 1/4 to ½ of children who get a febrile convulsion will have recurrent attacks and 1/3 will have a close family member with a history of febrile convulsion.

What is the outcome of children with febrile convulsion?

Febrile convulsions can look very frightening for parents who may think that their child is dying. This is not true as febrile convulsions are mostly harmless. The outcome of children with simple febrile convulsions is usually excellent. The outcome is not good if the convulsion is prolonged, confined to one half of the body, when it occurs in a child with a background of abnormal development or neurological dysfunction, and if the first convulsion occurs before 6 months of age. It is estimated that in such children about 5% will develop epilepsy later in life while only 1% of children with simple febrile convulsions develop subsequent epilepsy.

What do I do if someone is having a seizure?

Stay calm

Seizures usually end on their own and last from a few seconds to a few minutes

Create a safe space

Move sharp objects out of the way

If the person falls, place something soft under their head and roll them on their side as the seizure subsides

If the person wanders, stay by their side and gently steer them away from danger

Time it

Note the time the seizure begins and ends

Call 1990 if:

The seizure lasts more than 5 minutes

It repeats without full recovery between seizures

If consciousness or regular breathing does not return after the seizure ends

The person is pregnant, has diabetes, appears injured or is in water

You are not sure the person has epilepsy or a seizure disorder

Provide Reassurance

When the seizure ends, stay with them until complete awareness returns

DO NOT

Restrain the person

Put anything in their mouth

Are there special concerns for women who have epilepsy?

Women who have epilepsy face special challenges. Hormonal changes can cause some women with epilepsy to have more seizures during their period.

For women with epilepsy, there are also special concerns about pregnancy, because having a seizure and taking certain drugs during pregnancy may increase the risk of harm to the baby. Women can take the following steps before and during pregnancy to lessen these risks.

If you are a woman with epilepsy who plans to get pregnant, talk with your health team about how to best care for yourself and your baby.

Can a person die from epilepsy?

Most people with epilepsy live a full life. However, the risk of early death is higher for some. We know that the best possible seizure control and living safely can reduce the risk of epilepsy-related death.

Factors that increase the risk of early death include:

More serious health problems, such as a stroke or a tumor. These conditions carry an increased risk of death and may cause seizures.

Falls or other injuries that happen because of seizures. These injuries can be life-threatening.

Seizures that last over 5 minutes. This is a condition called status epilepticus. Status epilepticus can sometimes happen when a person suddenly stops taking seizure medication.

Rarely, people with epilepsy can experience sudden unexpected death in epilepsy (SUDEP). SUDEP is not well understood, and experts don’t know what causes it, but they suspect that it is sometimes due to a change in heart beats (rhythm) during a seizure. Sudden death due to heart rhythm changes also happens in people who do not have seizures.

The risk of sudden death is larger for people with major uncontrolled seizures.

If I have epilepsy, can I still drive a car?

Laws with regards to epilepsy and driving vary from country to country. In general, it is not advisable for persons with epilepsy to drive during the first two years of treatment and if the seizure s is not well controlled. As this could pose a danger to you and to the community as well.

If I have epilepsy, can I exercise and play sports?

Sometimes people with epilepsy worry that exercise or sports may worsen their seizures.

Exercise is rarely a “trigger” for seizure activity. In fact, regular exercise may improve seizure control. Safely playing sports can also be great for your physical, mental, and emotional well-being.

What is the prognosis of epilepsy?

It must be pointed out that MOST patients who develop seizures DO NOT BECOME EPILEPTICS.

The usual prevalence rate of chronic epilepsy in the population is about 5 per 1000. On the other hand, it has been estimated that up to 5% of the general population can experience non-febrile seizures at some point in their lives. So, almost one-tenth of all people who experience a single non-febrile seizure may go on to develop chronic epilepsy later in life.

The worldwide experience is that with early and proper treatment, almost 70% persons with epilepsy will achieve complete or near complete seizure control and almost 50% of these will be able to stop their treatment.

In newly diagnosed persons with epilepsy, the future outcome is excellent if fits are adequately controlled with anti-epileptic drugs early during treatment. If seizures are not controlled adequately or it takes a longer time to control fits, the prognosis is not that good.

It must be remembered that early and effective treatment of epilepsy improves the long-term outlook for such persons. The prognosis of chronic epilepsy is somewhat different. It has been estimated that almost 20-25% of newly diagnosed epilepsy patients will develop chronic epilepsy. These people do have some problems due to their epilepsy but most of them also are entirely normal between seizures.

 

Are there any voluntary bodies or associations for the help of persons with epilepsy in Sri Lanka?

Epilepsy Association of Sri Lanka (EASL) is a recognized national organization that works towards the welfare and care of epilepsy patients. At the international level, the corresponding bodies are the International Bureau for Epilepsy (IBE) and the International League against Epilepsy (ILAE).