Frequently Asked Questions
Epilepsy is one of the most common neurological conditions and affects at least 1 in every 200 people worldwide. In South Africa 1 in every 100 persons have epilepsy. Epilepsy is a physical condition characterized by unusual electrical activity in the brain. It is a symptom of a neurological disorder and shows itself in the form of seizures. Epilepsy is the tendency to have recurrent, unprovoked seizures and seizures are caused by a temporary change in the way the brain cells (neurons) work. Epilepsy is a disorder, not a disease, illness, psychiatric disorder nor a mental illness; and it is not contagious. Epilepsy affects all people, both sexes, all ages, all races, people of all levels of intelligence and of all social backgrounds.
In more than 50 % (approximately 66 %) of cases, the underlying cause of the epilepsy is unknown. This is called idiopathic epilepsy. In the rest of the cases, the underlying cause can be identified. This is called symptomatic epilepsy. With symptomatic epilepsy there can be many different underlying causes, for instance:
A result from a head injury
Birth injury (lack of oxygen during birth, etc)
Infections (e.g. meningitis, encephalitis)
Alcohol and drug abuse
Metabolic or biochemical disturbances or imbalances
The brain consists of millions of nerve cells, called neurons. Billions of electrical messages are passed on or fired between these cells, controlling our whole body, including what we think, feel, do, see, muscle movement, etc. The body has its own built-in balancing mechanisms which ensure that messages usually travel between nerve cells in an orderly way. Sometimes, an upset in the brain chemistry causes messages to get scrambled. When this happen the neurons fire off faster than usual or in bursts or too many neurons are triggered and fire off at the same time. This disturbed activity, which is like a small “electrical storm” in the brain, triggers seizures.
Epilepsy affects all people, both sexes, all ages, all races, people of all levels of intelligence and of all social backgrounds.
Most people with epilepsy are diagnosed before age 20, but the onset can be at any age. Many children with epilepsy do outgrow it and are able to live drug-free and seizure-free as adults.
The type of seizure the person has depends on the site in the brain where the electrical disturbance originates, e.g.:
If the nerve cells in the part of the brain responsible for movement are affected, then the person may experience involuntary twitching of an arm, leg or even an entire side of the body. If it affects an entire side, it can unbalance the person.
If the nerve cells in the center of the brain are affected, it will cause unconsciousness and would often result in a major seizure.
Minor seizures occur when there is a very brief interruption in the functioning of the brain. Due to the complex nature of the brain, symptoms can vary considerably from person to person.
Seizures vary in duration, depending on their types. They can last from a few seconds to several minutes. Many people experience an aura before the seizure itself while others have no warning. An aura is the very beginning of a seizure and is normally not obvious to the observer. It is usually a feeling of being ill at ease, a gastric sensation rising into the throat, a tingling feeling in a limb, or an intense feeling of fear. Some auras may not develop into a major seizure or are too brief to be of any warning. Sometimes it may alert the person sufficiently to allow him / her to prepare for the seizure.
After a seizure, the person may be disorientated, experiencing a loss of function and extreme tiredness. Rest and reassurance will help the person to fully recover consciousness from this state of mild to severe confusion.
There are several types of epilepsy. The different types of seizures are generally divided into two main categories, namely generalized seizures and partial seizures
This occurs when the excessive electrical activity in the brain encompasses the entire organ, during which there may be loss of consciousness. There are several kinds of seizure types in this generalised category with distinct features; like generalized tonic clonic seizures, absence seizures, myoclonic seizures, tonic seizures and atonic seizures.
Generalised Tonic Clonic seizures (previously called Grand Mal Seizures)
This is the most recognizable form of seizures in which the person my shout (as the air is being forced from the lungs during the Tonic phase), stiffening of the body will occur and the person will fall to the ground (tonic phase). The rhythmic tightening and relaxation of the muscles take place (convulsions) and the person may turn blue around their mouth due to the lack of oxygen. The person may make strange noises, salivate and be incontinent (clonic phase). The person will lose consciousness during the seizure and the duration will be a few minutes.
Absence seizure (previously called Petit Mal seizures)
It is most common in children and involves blank staring and failure to respond with possible twitching and blinking of the eyelids, or chewing. This is often mistaken for daydreaming. The loss of consciousness is brief and the seizure will last for a few seconds.
It involves sudden, brief, involuntary muscle jerks. Single or multiple jerks can take place as well as jerking of different bodily parts.
It is the general stiffening of the muscles without jerking. The person may lose consciousness and fall heavily.
It is the sudden loss of all muscle tone, causing the person to go limp, lose consciousness and fall to the ground. It is also known as “drop attacks”.
This occurs when the excessive electrical activity in the brain is limited to one area, which causes either simple partial seizures or complex partial seizures. In some cases partial seizures may develop into generalized seizures if the disturbance spreads from the localized area in the brain to affect the whole brain. This is known as a secondarily generalized seizure. The two main forms of partial seizures are; simple partial seizures and complex partial seizures.
Simple partial seizures
Movement or sensation in the part of the body controlled by the affected area of the brain is affected. Consciousness in not lost or affected, but the person may experience an altered sense of perception. It is often described as a “funny feeling”, “pins and needles feeling”, numbness or jerking in one limb or down one side of the body.
Complex partial seizures
It is a non-convulsive seizure, which may start with an “aura” (visual, auditory, taste, smell, etc.) The person may display abnormal behaviour or movements, e.g. plucking at clothes, lip smacking, loss of sense of time, disorientated, wandering around aimlessly or compulsively, etc. Consciousness is altered or impaired during the seizure and the seizure can last for a few minutes. A complex partial seizure can be mistaken for a psychiatric or psychotic episode by inexperienced onlookers, due to the abnormal behaviour that the person may exhibit during the seizure.
Some persons with epilepsy are sensitive to certain situations or stimuli which may trigger a seizure. Other persons with epilepsy do not have any specific triggers which may evoke a seizure.
Possible triggers include:
Forgotten or incorrect medication
Lack of sleep
Stress and excitement
Alcohol and drugs
Photosensitivity (flickering lights e.g. a TV screen, rare and well controlled)
Heat and humidity
Treatment of a person’s epilepsy depends on the type of epilepsy the person has, therefore treatment is very specific to each individual. Up to 80 % of persons who have epilepsy have their condition controlled with anti-epilepsy medication. Many other forms of treatment are available, such as neuro-surgery.
All people who are suspected of having had an epilepsy seizure will usually have and EEG (electroencephalogram). An EEG monitors the brain’s electrical rhythms via electrodes placed on the head. These rhythms are recorded on videotape or on a paper chart and then analysed. Additional investigations may include blood tests and special tests such as CT scanning or MRI, which produce X-ray-type images of the brain.
Remain calm and note the time
Clear a space around the person, prevent others from crowding around
Loosen tight clothing / neckwear. Remove spectacles.
Cushion the head to prevent injury
Put person into shock recovery position (i.e. roll person into his / her side, top leg bent, bottom arm slightly extended)
Wipe away excess saliva to facilitate breathing
Reassure and assist until person has recovered or become re-orientated
Allow the person to rest / sleep is necessary – cover with a blanket.
Note the duration of the seizure and the time it took place. Provide this information to the person who had the seizure after the person has recovered fully, in order for him / her to record the information in his / her seizure diary.
Restrict or restrain the person’s movements.
Move the person unless the person might hurt him / herself or is in immediate danger (i.e. in a busy road)
Put anything between the person’s teeth or in the person’s mouth
Give anything to eat or drink during the seizure
Give extra anti-convulsants, unless stipulated to do so by the neurologists
Call a doctor or an ambulance unless the person has injured him / herself badly or the seizure lasts longer than 6 minutes, or the person has repeated seizures without recovering
As seizures are mostly unpredictable they may cause a disruption or interruption of the person’s daily routines. Many people who have epilepsy however state that the actual seizures do not impact negatively on their lives, but that it is the ignorance, stigmatization, discrimination and lack of knowledge of society that impact very negatively on their lives. Due to the fact that society does not understand what epilepsy is and people often fear the condition, they discriminate against people with epilepsy, such as not allowing them to participate in social events, careers, etc. The same often happens to children who have epilepsy and they experience discrimination at schools, within sport clubs or amongst their friends. This can severely affect a child’s self-esteem and should therefore be immediately addressed.
Parents often find it very difficult to accept the diagnosis of epilepsy in a child. Parents tend to experience a grieving process and may need assistance and counseling during this time.
It is important to know that persons with epilepsy, both adults and children, can live active and normal lives, as long as society is willing to accept and learn more about epilepsy.
Should someone in your family or a friend experience a seizure you firstly need to consult a medical practitioner (preferably a neurologist) in order to obtain a diagnosis. Should the person be diagnosed with epilepsy you, all the friends and family members of that person and the person him / herself needs to learn more about the condition, in order to accept the diagnosis and carry on with life. You can call Epilepsy South Africa for supportive and information services which can include counseling, referrals to medical specialists, placements at protective workshops, residential care, public education, training and awareness as well as advocacy. If you know of someone who has epilepsy and who has experienced discrimination in any form, e.g. lost their job due to having epilepsy, please call Epilepsy South Africa, who will advocate with and on behalf of that person.
Epilepsy South Africa is a Non-Profit Human Services Organisation that renders services to persons with epilepsy and other disabilities as well as persons affected by the condition. There are seven branches nationally, as well as a national office which is based in Cape Town. A variety of services are offered by the branches, based on the needs of their clients.
To contact your closest epilepsy South Africa branch please call:
0860 EPILEPSY / 0860 374537
Your call will automatically be routed to the closest Epilepsy South Africa Branch.
You can also send an e-mail to: firstname.lastname@example.org
Or visit the web-site: www.epilepsy.org.za
Or contact the National Office at:
Tel : 021 – 447 3014
Fax : 021 – 448 5053