Epilepsy

Epilepsy can happen to anyone at any age, but we know that while people are young, it is more likely for epilepsy to develop. Some people start having seizures when they are babies or young children, but the seizures stop when they reach their teenage years. For others, their seizures continue through to adult life, or begin for the first time during adolescence. If you have epilepsy, whether you have had seizures since you were very young or have just started having them, the following information is for you.

Over recent years there have been many new developments in the treatment of epilepsy and our understanding of its causes. New discoveries will continue to be made in the future and it is useful to check every so often that your information is up-to-date.

What is epilepsy?

Epilepsy is defined as a tendency to have repeated seizures of what we call "primary cerebral origin", which means they start in the brain. Within the brain, there are many millions of brain cells (neurones) which communicate through electrical and chemical impulses (neurotransmitters). When these impulses become disorganised, for example when messages get passed on which shouldn't happen, this can result in a seizure. "Repeated" is an important word. Many people have one seizure at some time in their lives. Epilepsy is not generally diagnosed until at least two seizures have occurred.

What causes epilepsy?

Even today, in up to 50% of people diagnosed with epilepsy, no actual cause is found. When no cause can be found, epilepsy is called primary or idiopathic. However, as better and better scanning techiques are developed and as our understanding of epilepsy grows, it should be possible to find the cause in many more people. Identified causes can include head injuries, strokes, birth injuries, infections such as meningitis or encephalitis, a hormone imbalance or haemorrhage. If a cause can be found, then epilepsy is called secondary or symptomatic.

How is epilepsy diagnosed?

The crucial thing is for the doctor to have an accurate, eye witness account of what happened since he or she is very unlikely to ever see you having a seizure. It is very helpful if eye witnesses actually write down what they saw. The doctor will also try to find out how much you remember about the seizure and how you felt before and after. Again it is a good idea to write this down and to keep a diary of when seizures happened, how long they lasted and the circumstances in which they occurred.

Will I feel any different before or after a seizure?

Here are some of the more common feelings associated with seizures

Prodrome - can precede a seizure and is a vague sensation or intensified emotion indicating a slight disturbance in the brain's electrical activity. Usually this builds up over a period of hours or days before the seizure occurs.
Aura - this is a brief event which may take the form of a strange taste or smell, a funny feeling or sensation. You may hear a familiar piece of music or a non-existent sound. An aura is in fact a seizure already happening but it can serve as a useful warning that the disturbance may spread causing a major seizure with loss of consciousness. It can enable you to let someone know what is going to happen or help you to find some place where, if necessary, you can sit or lie down.
After a seizure some people feel very tired and want to sleep, or ache because their muscles have worked quite hard. Sometimes people feel confused or disorientated afterwards or are forgetful. Sometimes, following a seizure people may have difficulty moving a part of their body for a short time, but this is quite rare. For many people, however, seizures happen without warning, only last a short time and they experience no lasting ill effects. It is important to remember that each person's experience of epilepsy will be an individual one.

Recording of seizures

Keeping a record in a diary of numbers of attacks and of what happens before, during and after your seizures will help your doctor in the management of your epilepsy. It will also help to give a clearer picture of the pattern your condition takes. It may also help to identify if there are any triggers for your seizures; for instance, do they occur mostly when you are tired, or under stress, or bored? Knowing this could help you control the seizures by avoiding or reducing these factors.

What are the different seizure groups?

What are seizures like? Seizures are generally divided into two main groups:

Generalised Seizures: In this type, the whole of the brain is involved and consciousness is lost.
Absences involve a brief loss of consciousness and are still sometimes called "petit mal".
Myoclonic jerks involve abrupt jerking of the limbs.
Tonic is when the body goes stiff and the person may fall.
Atonic is when the body goes floppy and the person may fall.
Tonic clonic involves stiffness, falling to the ground and jerking. These used to be called "grand mal".
Partial seizures: In this type, only part of the brain is involved.
- In simple partial seizures, consciousness is not affected and the seizure may be limited to twitching of a limb or an unusual sensation.
- Complex partial seizures occur when the seizure activity happens in the part of the brain concerned with mood and emotion "the temporal lobe". People may wander around, fiddle with clothes and be confused. Consciousness is affected to varying degrees from person to person.

Some people have a warning (aura) at the start of a seizure. People may also have a number of different seizure types or their seizures may change over time.

It is important to remember that many people think epilepsy only consists of major convulsive tonic clonic seizures. Being able to describe your seizures clearly and what to do should a seizure happen is very helpful.

Seizures do not generally last very long and are self-limiting, which means they finish of their own accord. It is only necessary to call an ambulance if one seizure quickly follows another the seizure lasts longer than 5 minutes the seizure lasts longer than usual the person has difficulties breathing or has injured themselves.
If the person has the type of seizure where they fall and then recover with or without confusion: reassure, check for injury and stay with them until fully recovered.
If the person becomes confused, wanders around, etc: do not restrain but guide away from danger, reassure and await full recovery.
It is a good idea to carry a card with details of your seizures in case you have a seizure on your own in public. Cards are available from the epilepsy organisations.

How are seizures treated?

The good news is that most people with epilepsy today have their seizures fully controlled with their drug treatment. A growing number of drugs are available. Certain drugs are regarded as being more suitable for certain types of seizures, so the doctor will begin by prescribing the drug or combination of drugs felt to be most suitable for your type or types of seizures. It can, however, take some time for the drug which works best for you to be identified and to get the dosage exactly right.

What about side effects?

Any drug can have side-effects and anti-epileptic drugs are no exception. Common side effects are sleepiness, unsteadiness and feeling sick. You may feel like this when you first start to take the tablets, but this should wear off. If not, do see your doctor. These effects can also occur if the dose is too high. It is important to stress, however, that any change of drug or dosage must be prescribed by the doctor. If drug treatment has been ineffective, then surgery may be considered. Before surgery, many tests are necessary to demonstrate that the epilepsy arises from one specific part of the brain, which could be removed without causing undue damage to the working of the brain.

Healthy Eating

The benefits of healthy eating are well known. If you have epilepsy, a good diet has additional benefits. Having a healthy body has a good effect on your brain, and can help avoid the icnrease in seizures which can result from ill-health. A diet which is high in fibre and low in fat and which includes fresh fruits and vegetables, is a healthy one for everyone. Just as important as eating the right food is to eat regularly. Without food the body does not function well, so missed meals and strict diets are to be avoided.

Sleep

The healthy body needs rest also. Long periods without sleep can trigger fits even in someone who does not have epilepsy at all. Although occasional late nights will not make any difference to the person with epilepsy, it makes sense to make a regular sleep pattern part of your healthy lifestyle. This may mean that jobs which involve changing shift patterns will be unsuitable for your, so remember to take this into account when thinking about employment.

Exercise

Everyone needs exercise to keep them healthy and the person with epilepsy is no different. Make sure you are clear about what your epilepsy is like - for example, do you have a warning? do you lose consciousness? and what risks there may be in certain sports. In most cass, this means a few simple precautions, but there may be some activities such as diving or rock climbing which are to be avoided. Water sports such as swimming can be great fun, but it is important to swim with someone who knows you, or to tell an attendant. It is best not to swim if you have forgotten to take your medication at the time it was due. If your seizures are triggered by strenuous exercise, extra care will be needed when choosing what sports you take part in.

Alcohol

Your doctor will advise you to be cautious about drinking alcohol. Most people can take one or two alcoholic drinks with no ill-effects, but your resistance to the effects of alcohol may be lower, particularly if you are still in your teens. Some people on anti-epileptic medication become drowsy and depressed when they drink alcohol, and because it will make your medication less effective you are more likely to have seizures. Increased seizures are also associated with heavy drinking because of missed meals, forgotten pills, etc. However, you are part of a society in which alcohol is often a symbol of sociability and hospitality. If it is important to you to drink alcohol, find your own level and avoid excessive drinking.

Smoking

Although no research has shown that smoking is particularly bad for epilepsy, the ill-effects on general health are well publicised. If having a healthy body can have a good effect on your epilepsy, this means that smoking is not a good idea.

Where to live?

If you are leaving home to be a student, your accommodation may be arranged by the college or university that you are going to attend. By telling people at the college as much as possible about your epilepsy, it should be possible for the most suitable rooms to be allocated. If you are still having seizures, it may be wise not to be living alone and for room mates to know what to do should you have a seizures. Similarly, if you are just moving away from home to start a job, it may be a good idea, especially at first, to share accommodation with friends or someone who understands about your epilepsy.

Tell your new friends and colleagues about your epilepsy. Embarrassment can result if a seizure occurs unexpectedly when you are with unprepared friends or colleagues. Find an appropriate time to mention your epilepsy to those with whom you have close daily contact. If the epilepsy is explained in a matter-of-fact way, which neither exaggerates it or dismisses it too lightly, people will usually respond positively. They may find it helpful if you give them a few guidelines for coping with seizures, should they occur.

Your Medical Care

When you move into your new surroundings, it will be important to register as soon as possible with the appropriate medical service or practice there. If you have moved some distance from home, you may choose to stay with your existing consultant or to move to a closer hospital. Discuss this with your new GP. If you are a student, maybe you would still be able to arrange hospital appointments for holiday periods.