Top 5 things to know about epilepsy

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As voted by Epilepsy Ireland service users in 2018.

1. Seizure First aid (a tonic-clonic seizure)

Many people feel helpless and unsure of what to do when responding to a tonic-clonic seizure. These are convulsive seizures involving loss of consciousness, muscle stiffening, the person falling to the ground followed by jerking movements.

What you should DO:

  • Note the time the seizure started. If the seizure continues for longer than five minutes, call an ambulance
  • Protect the person from injury and remove any harmful objects that may be nearby
  • Cushion the person's head
  • Check for epilepsy ID (bracelet/ necklace) and gently place the person in the recovery position when the seizure has finished.
  • Stay with the person and reassure

2. Not every seizure involves convulsions

Did you know there are over 40 different types of seizures? In simple terms a seizure happens when ordinary brain activity is suddenly disrupted. A seizure can be described as an internal electrical storm and has been likened to a computer crashing. It is the consequence of abnormal, excessive discharges of nerve cells. It is this sudden unexpected loss of control that accounts for many of the misconceptions and the prejudice associated with epilepsy. The part of brain where the temporary malfunction occurs determines the type seizure a person will have.

For example, if the malfunction occurs in the part of the brain that involves sensory perception, the person might experience a strange smell, taste or a visual disturbance which they cannot stop. If the person is fully aware of the sensation, these are called simple partial seizures.

Some partial seizures involve a disturbance or a loss of consciousness and the person will have no knowledge of what happened during the seizure. When a partial seizure spreads to involve areas of the brain concerned with consciousness, these are called complex partial seizures.

3. On rare occasions epilepsy can be life threatening 

For the majority of people, seizures are not a medical emergency. However epilepsy is not exclusively a benign condition and does come with certain increased risks – for example, accidents and injuries from falls. Another risk is Sudden Unexpected Death in Epilepsy or SUDEP when a person with epilepsy dies suddenly and prematurely and no other cause of death is found. Tragically, it is most common in young adults, particularly men. The causes of SUDEP are still not fully understood but may be due to a failure of cardiac, respiratory and autonomic systems.

Epilepsy Ireland estimates that there are up to 130 epilepsy-related deaths in Ireland each year and that about half are due to SUDEP. Other epilepsy-related deaths are caused by prolonged seizures, accidents, injuries and drowning. Becoming seizure-free is the best way of reducing the risk of SUDEP and there are a number of steps that people with epilepsy can take to reduce risks.

4. Epilepsy in most cases does not affect your career

In most cases epilepsy should not affect career prospects. However, the impact of epilepsy on people's lives varies a great deal and decisions on employment should be based on each individual's circumstances. Most people with the condition are perfectly able to work at whatever they choose to do. Many do not have any particular difficulties when placed in the right job, but each person's circumstances need to be individually assessed. People with epilepsy can also find it difficult when seeking employment and often face a dilemma in deciding whether to reveal their condition to their manager and colleagues.

5. Epilepsy doesn't define who you are

People with epilepsy face challenges in their lives like anyone else in society. Most with the condition are not cowered; in fact they are often emboldened to achieve their goals in both their personal and professional life. There are many misconceptions about epilepsy. It is important for people to remember that most people with epilepsy have been able to stabilise their condition through a medical regime, treatment, lifestyle changes and for some people surgery is an option. Furthermore, for the majority of people, the condition is unlikely to impinge on their working lives.

Attitudes towards epilepsy are improving though negative attitudes still exist despite Ireland being a relatively more progressive country than yesteryear. Data shows that 50% of people with epilepsy still report stigma.Consideration should also be taken when certain language is used to avoid offence. Many people with epilepsy dislike being called an 'epileptic' and the word seizure should be used instead of 'fit'.