Living with Epilepsy

• Introduction
• Behaviour and emotions
• Driving and recreation
• Education and employment
• Pregnancy and motherhood
• Daily living
• Caring for a child under 3 years of age

Introduction

The vast majority of people with epilepsy are able to live full lives with no disability in between attacks. Approximately 80% can be significantly helped by current therapies and may go months or years between seizures with 70% being seizure free on Anti-Epileptic Drugs (AEDs). However, there is a 2 to 3 fold increase in sudden death, which is unexplained and unpredictable. With some types of seizures, there is a risk of head injury or aspiration of vomit into the lungs, which can, on occasions be fatal.

Epilepsy can and does affect a small proportion of people and their friends and families by influencing other factors, which may seriously impact on their activities of daily life. For example, some people may require someone else there all the time because they experience fits without any warning and/or exhibit dangerous post-epileptic behaviour.

People with prolonged seizures or severe seizures that are resistant to treatment have, on average, a shorter life expectancy and an increased risk of cognitive impairment. This is particularly the case if the seizures developed early in childhood.

Behaviour and emotions

It is not uncommon for people with epilepsy to develop behavioural and emotional difficulties. Such individuals may avoid social contact in school, employment, or other settings.

All people with epilepsy have an increased risk of poor self-esteem, depression and suicide, and may live with an ever-present fear that they will have another seizure.

Driving and recreation

By law, people with epilepsy must stop driving and notify the DVLA (Drivers and Vehicle Licensing Agency).

In the U.K. a Group 1 (car or motorcycle) licence cannot be held unless the following legal criteria are met.

The regulations state:

• A person who has suffered an epileptic attack whilst awake must refrain from driving for 1 year from the date of the attack before a driving licence may be issued.
• A person who has suffered a single epileptic attack whilst asleep must also refrain from driving for 1 year from the date of the attack.
• If seizures have occurred only during sleep for a period of at least 3 years, and no attacks whilst awake have occurred, then a Group 1 driving licence may be held.
• The DVLA advises patients not to drive during a period of drug withdrawal, and for 6/12 after the withdrawal has been completed.
• In any event, the driving of a vehicle by such a person should not be likely to cause danger to the public.

For vocational and truck drivers the regulations are even stricter, (i.e. a 10 year period of freedom must be established during which there is no anticonvulsant use).

Stringent regulations also apply to the armed forces, aircraft pilots, sea captains, divers and similar activities.

The correct diagnosis of a seizure or other attack at any age is therefore of major social and legal importance.

In the UK it is the responsibility of the affected individual to inform the DVLA.

If treatment (AEDs) is withdrawn, the DVLA recommends that driving should cease whilst the AEDs are being withdrawn, and for a period of 6 months following withdrawal. If the person has a seizure, then the normal regulations apply.

In law if within a 24hour period, more than one epileptic attack occurs, these are treated as a “single event” for the purpose of applying the epilepsy regulations for driving. An episode of Status Epilepticus would be considered, as a solitary seizure and the driving licence would be withdrawn for 1 year.

Education and employment

Most children with epilepsy attend mainstream schools. Many children with epilepsy have no other major condition, and the seizures are well controlled.

Some children with epilepsy have other major conditions (such as learning difficulties) and may require special schooling. This accounts for up to 25% of children with epilepsy.

Pregnancy and motherhood

Women with epilepsy need special treatment, and active advice with regard to contraception and becoming pregnant.

Some of the AEDs used to treat epilepsy are associated with birth defects. This risk is slightly higher than 4 - 6% compared with the background risk of 1-3%.

Many patients with epilepsy, who become pregnant, stop their medication because of the potential side effects of the medication on the unborn baby. This may increase the seizure frequency.

Pregnancy often makes epilepsy worse, because there are complex biochemical changes in the body, in pregnancy, which may increase seizure frequency, or change the effectiveness of the medication.

Epilepsy may present for the first time in pregnancy.

Daily living

A number of factors are likely to influence the effects of epilepsy on daily living and therefore any care or mobility needs. No single factor can be decisive.

The vast majority of people with epilepsy are able to live full lives with little disability in between attacks. They cannot generally be considered as being in substantial danger. Though the medications which they take may not affect the majority of people’s ability to care for themselves and get around, they may be affected to some degree by side effects, such as mental sluggishness, depression, tremors, rashes, spots, hypertrophy of the gums, blood disorders to name a few.

A risk of seizure occurrence does not in itself mean that a person needs attention or supervision.

In some types of seizures, the person may be incontinent during the seizure. However, unless other conditions are present e.g. learning difficulties or problems with manual dexterity, the person will usually be able to deal with this themselves.

It is a small minority who will require attention or supervision to any significant degree due to complicating conditions or where the epilepsy cannot be adequately controlled.

Caring for a child under 3 years of age

A parent with epilepsy who is caring for a young child may pose a risk to that child. When assessing that risk, the following should be taken into account: -

• The nature of the fits
• Whether there is any useful warning of an impending fit
• Any dangerous post fit behaviour
• The frequency of the fits
• Age of the child

if it is considered there is a significant risk the person with epilepsy may need supervision to prevent them injuring the child during a seizure.

Amended November 2008