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Living with Epilepsy

Adult Companion’s Guide

Epilepsy in Adulthood —
A Companion’s Guide

This content has been abridged for the website — please download the Full PDF Booklet for all the available information, including:

Medical Aspects of Epilepsy

A single seizure does not constitute epilepsy. There must be a history of recurrent seizures before a diagnosis of epilepsy is confirmed.

Seizures can take many forms but most people with epilepsy will tend to have mainly one type. Sometimes however, people have two or more different types of seizure.

Epilepsy can affect anyone at any time, although it often starts in early life. It is often difficult to diagnose as it is not always clear that the episodes people experience are actually epileptic seizures. Sometimes nonepileptic attacks such as fainting or hysterical episodes can be mistaken for epilepsy. These episodes can so closely mimic a true epileptic seizure that they are sometimes referred to as ‘Pseudoseizures’.

The reason why epilepsy develops is not always obvious and for almost 70% the cause is unidentifiable. There are two main causes of epilepsy:
(a) Brain injury or disease and
(b) Hereditary susceptibility

The brain damage can occur as a result of injury to the head, infections such as encephalitis or meningitis, malformation of the brain, degeneration of the brain or metabolic (biochemical) disorder as a result of low blood glucose, low calcium level or the effect of drugs, particularly alcohol. One further cause of brain damage is the development of a tumour.

Hereditary factors can be important since epilepsy can be inherited. In the majority of cases, however, inheritance probably only plays a limited role. This is especially true in relation to partial seizures.

More often than not the cause cannot be identified. Epilepsy with no known cause is said to be idiopathic epilepsy. 
Many people wrongly believe that there are only two types of seizure – tonic-clonic seizures (incorrectly called Grand Mal) and absence seizures (incorrectly called Petit Mal).

There are, in fact, many types of seizure and an international classification has been developed to differentiate between the different types.

In simple terms there are Generalised Seizures and Partial Seizures. The whole brain is involved in generalised seizure and only part of the brain is involved in partial seizures. Both generalised and partial seizures can be subdivided into various types. More detailed information about seizure types can be obtained from reference books as listed at the back of this booklet.

The first people to become aware of a problem are almost certain to be parents and they will, in normal circumstances, contact the family doctor for advice.

The Diagnosis

The first people to become aware of a problem are almost certain to be parents and they will, in normal circumstances, contact the family doctor for advice. It is highly likely, and indeed desirable, that a referral will be made to a hospital consultant, who will in turn advise the family doctor on the best course of treatment.

The doctor will want to know as precisely as possible what happened when the episode occurred. The person attending the hospital with adolescents should expect the following line of questioning and be prepared to answer those which they are unable to answer themselves:

Having completed the documentation, a full medical examination is carried out where such things as heart rate, balance, eye-control and reflexes are checked. Other tests will be organised which will almost certainly mean a further visit to the hospital.

Tests and Scans

For more details on the tests and scans below, download the Full PDF Booklet
Electroencephalogram (EEG)

The brain works through a network of nerve cells which communicate with each other by electric signals. The EEG detects and records these signals.

Video EEG Telemetry

This is done by linking EEG equipment to a video camera and recorder whereby the traces recorded and the youngster’s body activity are combined together on the one recording.

Ambulatory monitoring of EEG

This is portable EEG equipment used to take recordings over a 24-hour period. Here, a small cassette recorder is carried around the waist and is connected to the scalp by leads.

Computerised Axial Tomography
(CT or CAT Scan)

This test is rarely necessary for investigations into epilepsy but occasionally it is required. In essence, the machinery takes X-rays of segments of the brain.

Magnetic Resonance Imaging
(MRI Scan)

The brain’s own radio signals are stimulated by a magnetic field and these signals can be mapped out and read by the machine, giving a very clear picture of the inside of the brain.

Antiepileptic Drug Treatment

50 - 70% of people’s seizures will be well controlled by medication with minimal side effects. 30 - 35% will have seizures which are resistant to antiepileptic drugs and the management of their epilepsy will be more difficult.

Alternative Treatments

The indications for using alternative treatments such as acupuncture and aromatherapy have yet to be established in terms of their effectiveness.

Surgical Treatment

Certain people, whose epilepsy is very poorly controlled by drugs, are considered for surgical treatment. This treatment is only available in a few specialist centres and is available only for specially selected hospital patients.

Counselling Services

For those who have difficulty in coming to terms with a diagnosis of epilepsy, some specialised clinics provide a counselling service, as do most GP practices.

First Aid for Seizures

In the event of youngsters being diagnosed as having a convulsive type of epilepsy, it is essential that their companions are fully aware of basic first aid procedures. See our First Aid page for more details or download the Full PDF Booklet

Employment

There can be no doubt that jobs are not easily come by in the competitive world in which we live. Furthermore, it very often proves to be the case that it is even more difficult for those who have epilepsy to find employment and so advice and some specialist help is often required.

In seeking employment it is essential that a sense of realism, in relation to suitable work, is applied to the task. It is counter-productive to advise people with epilepsy to apply for jobs for which they are obviously unsuitable. Far better to direct their thoughts towards the huge numbers of jobs in which there are no obvious restrictions for people with epilepsy. For instance, an application for a job as a scaffolder will be doomed to failure whereas one for work as a gardener may meet with success.

One thing which has to be impressed on those with epilepsy is the fact that many people with and despite the condition are holding down highly responsible jobs across the whole spectrum of working life.

Specialist help, provided by the statutory employment services, is available and is well worth pursuing. Attached to all Job Centres are Disablement Employment Advisers (DEAs) who specialise in helping to place people with disability in employment.

For further details, download the Full PDF Booklet

Educational Aspects

Many opportunities are available for people with epilepsy to venture into the fields of further and higher education. Guidance is needed as to the types of course to be followed and the establishments where suitable courses are provided.

Entry into further education is more readily available now than ever it was. Colleges of Further Education provide courses for people with all levels of ability and disability, ranging from basic skills to academic and vocational qualification. Some specialist colleges provide residential provision for the duration of the course if this should be necessary. Generally speaking, all Colleges of Further Education welcome applications from people who have any sort of special need and a companion can be of great help finding out more about them. The Epilepsy Associations will readily advise on facilities available as will, of course, Local Education Authorities.

Entry into Higher Education is usually by virtue of academic qualification. For instance, entry to a degree course is generally thought of to be via the traditional “A-Level” route. Although this is by far the most usual route, it is by no means the only one. Provision is made in all institutes of higher education to provide facilities for mature people who may not have any formal entry qualification but who are able to clearly demonstrate that they could cope with the rigours of high levels of study. The general criteria for entry will not be whether or not applicants have epilepsy (or indeed any other medical conditions) but whether they have the academic ability to cope with the levels of study and the application required to complete the course successfully. Whilst looking at the scope of provision companions should highlight the wonderful opportunities provided by the Open University.

For those who find themselves at a loss for the future because of the restrictions placed on them by a diagnosis of epilepsy, the encouragement of others, in relation to the pursuit of educational opportunity, is invaluable. They should be constantly reminded that it is never too late to learn and that there is opportunity available regardless of having epilepsy.

Social Aspects

Statutory Benefits

Here is a list of some of benefits designed to help those with disability including those with epilepsy:

Attendance Allowance; Carer’s Allowance; Carer’s Credit; Disability Living Allowance; Disability Premiums (Income Support) Disabled facilities Grants; Disabled Student’s Allowance; Employment and Support Allowance; Incapacity Benefit; Income Support; Independent Living Fund; Personal Independence Payment.

Personal Relationships

At Work

Workmates can be a great help to those who have epilepsy in several ways. Their attitudes towards the condition are all important in its level of acceptance in the workplace. The informed workmate can do much to overcome fear and prejudice by bringing others to a better understanding of the condition and so dispel the myths and misunderstandings that unfortunately do tend to prevail even in our modern culture.

Once people are aware of the condition in a workmate it can be discussed openly and in positive terms. It is far better for everybody to know what to do if and/or when seizures occur than to leave the onus on one person.

The aim should always be to continue in gainful employment regardless of a diagnosis of epilepsy. Working companions, especially those who are employers, should make every effort to ensure that this is possible.

At Home

Family members of those who have epilepsy have important roles to play in the management of the condition. They should try to make every effort to learn as much about epilepsy as possible so as to become aware of possible causes and of varying treatments.

In the case of adult onset of epilepsy every effort should be made to continue family life in the same manner as before the epilepsy ever appeared on the scene. This may not always be easy. For instance, if it is the driver of the family car who contracts epilepsy, lifestyles are going to change for everybody in the household. In such cases alternative plans, at least for one year, have to be made to cover for the loss of the car.

Family members have to be careful not to over compensate for changes in lifestyle and become overprotective. It is very easy to try and cover every contingency for the possible onset of a seizure but it is simply not possible. Life must go on as normally as possible and hurdles crossed as they present themselves in daily life.

At Play

There are so many leisure activities available for people who have epilepsy that it would be impossible to list them all.

There are, however, some pastimes which are unsuitable for those with epilepsy and, regretfully, these have to be avoided even if they were a major hobby before the onset of epilepsy. Activities which are unsuitable include mountaineering, deep sea diving and activities involving the use of firearms or other weaponry.

In such cases companions can be of great assistance in helping to make the necessary adjustments to compensate for the loss of the activity.

Driving

For many people, particularly those who earn their livings by driving, one of the most serious social complications of a diagnosis of epilepsy is the withdrawal of the driving licence. The rules regarding driving are quite specific.

See our Driving page for more details or download the Full PDF Booklet

Psychological Aspects

Adults who have epilepsy are prone to suffer significant psychological problems in comparison with those who do not have the condition. These include high levels of anxiety and depression, poor self-esteem, a lower sense of control and feelings of stigmatisation.

For those, however, with well controlled epilepsy, the the picture may be much brighter. For this group epilepsy does not appear to profoundly diminish their ability to enjoy their lives to the full.

For more details on the topics below, download the Full PDF Booklet

This section is addressed to those who teach the 100,000 children and young people in the UK who have some form of epilepsy.

There are rules and regulations for gaining or holding a drivers licence. See if you are eligible, to ensure your own safety and those around you.

Teenage years are complicated enough as it is, so we have prepared a companion guide for you to help find out about epilepsy.