Sharing epilepsy - understanding the condition

For many of us epilepsy is just another medical condition.
But for one in every hundred South Africans - well over 493 000 people nationally - epilepsy is a medical condition they have to live with and manage daily, often with very little support and understanding.

As part of the Government Employees Medical Scheme's (GEMS) ongoing effort to educate our members - and future members - on a range of healthcare topics, we would like to shed some light on this condition.

According to Epilepsy South Africa, the theme of Epilepsy Day this year is "Sharing epilepsy". "It is unfortunate that a stigma is still sometimes attached to epilepsy, even though epilepsy is a disorder - not a disease, illness, psychiatric disorder or a mental illness - and it is not contagious," says GEMS, South Africa's second largest medical scheme.

Epilepsy affects people of all ages, backgrounds and intelligence levels and does not prevent people from being high achievers or contributing to society. Jonty Rhodes, one of the greatest and most successful South African cricket players has epilepsy. "By understanding what causes epilepsy and how you can deal with it, we can make even greater strides to do everything in our power not to alienate epilepsy sufferers while offering them much needed support," explains GEMS.

• What is epilepsy?

Epilepsy South Africa says epilepsy is one of the most common, yet serious neurological conditions. It is a physical condition caused by unusual electrical activity in the brain and manifests itself in the form of seizures. More simply put, epilepsy is the tendency to have recurrent, unprovoked seizures that are caused by a temporary change in the working of the nerve cells (neurons) in the brain.

• What causes epilepsy?

Unfortunately, the cause of epilepsy is unknown in more than 50% of all cases. When the cause is unknown, we refer to idiopathic epilepsy. If the underlying cause can be identified, we refer to 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)
• Haemorrhage
• Strokes
• Tumours
• Alcohol and drug abuse
• Degeneration (aging)
• Metabolic or biochemical disturbances or imbalances.
• What happens in the brain when a person is having a seizure?

The brain consists of millions of nerve cells, called neurons. Billions of electrical messages controlling what we think, feel and do are passed on or relayed between these cells. These messages usually travel in a specific way, which is controlled by built-in mechanisms in the body. However, sometimes these messages get "scrambled" if the brain chemistry is not in balance. When this happens, the messages are relayed too fast or too many neurons are triggered at the same time. This results in a small "electrical storm" in the brain, which triggers seizures.

A total of 75% of people have their first seizure before the age of 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 lives as adults. 

• What are the different types of seizures?

The type of seizure the person has depends on where exactly in the brain the electrical disturbance originates. Due to the complex nature of the brain, symptoms can vary considerably from person to person.

We can, however, distinguish between certain seizures. For example, 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 the nerve cells in the centre of the brain are affected, it will cause unconsciousness and can often result in a major seizure. Minor seizures occur when there is a very brief interruption in the functioning of the brain.

Seizures vary in duration and can last from a few seconds to several minutes. Many people may feel a seizure coming on in time to warn others. This feeling is called an "aura", which refers to the very beginning of a seizure. This is not normally obvious to the observer, but is 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 or her to prepare for the seizure by taking medicine or standing still in a safe place.

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.

• What can trigger a seizure?

Some persons with epilepsy are sensitive to certain situations. Possible triggers include:

• Forgetting to take your medication or taking the wrong medication
• Fever
• Lack of sleep
• Stress and excitement
• Boredom
• Alcohol and drugs
• Photosensitivity (flickering lights, e.g. a TV screen - this is rare and can be well controlled)
• Startle response
• Illness
• Hormonal changes
• Heat and humidity
• Treatment of epilepsy

The good news is that epilepsy is easily treated and up to 80% of persons who suffer from epilepsy have their condition controlled with anti-epilepsy medication. Treatment will vary according to the type of epilepsy a person has and therefore treatment is very specific to each individual. If treatment alone is not sufficient, there are also various other options available, such as neurosurgery.

It is imperative that a person suffering from epilepsy - or even suspected epilepsy - visit their doctor. Usually the doctor will ask for an EEG (electroencephalogram), which monitors the brain's electrical rhythms via electrodes placed on the head. These rhythms are recorded on videotape or on a paper chart before being carefully analysed. Additional investigations may include blood tests and special tests such as CT or MRI scans, which produce X-ray-type images of the brain. After all the necessary tests, your doctor will prescribe treatment suitable to your individual needs and lifestyle.

• What to do during a seizure

You can help a person suffering from a seizure by doing the following:

• Remain calm and note the time
• Clear a space around the person, prevent others from crowding around
• Loosen tight clothing or neckwear. Remove spectacles.
• Cushion the head to prevent injury
• Put person into shock recovery position (i.e. roll the person onto 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 becomes re-orientated
• Allow the person to rest / sleep if necessary - cover with a blanket
• Note the duration of the seizure so that the person can later record the information in his / her seizure diary.

What NOT to do during a seizure

• 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-convulsion medication, unless this has been stipulated by the neurologist

Call a doctor or an ambulance unless the person has injured him- / herself badly or the seizure lasts longer than six minutes, or the person has repeated seizures without recovering.

Remember that having epilepsy does not mean a person cannot have a normal life or have a successful career. If you have a child suffering from epilepsy, it also doesn't mean your child cannot participate in sport or other activities - you just need to clear it with your doctor and inform the teachers of your child's condition in order to prepare them should something happen.
If you suspect you or a loved one may be suffering from epilepsy, you should visit your doctor as soon as possible. Counselling and support groups are available to educate you and your loved ones on epilepsy, and they will guide you on how to deal with this condition while making the most of your life. If you have any more questions on epilepsy, you can phone the GEMS call centre on 0860 00 4367 or send an SMS to 083 450 4367. GEMS will assist you in every way possible to ensure your health and wellbeing.

[Sources: www.epilepsy.org.za; www.statssa.gov.za]