Living with Epilepsy

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About 1 in 30 people develop epilepsy at some stage in their life. It most commonly starts in childhood and in people aged over 60. However, epilepsy can begin at any age. In general, seizures are well controlled by treatment in about 4 in 5 cases

What is a seizure?

A seizure is a short episode of symptoms caused by a burst of abnormal electrical activity in the brain. Typically, a seizure lasts from a few seconds to a few minutes.

The brain contains millions of nerve cells (neurons). Normally, the nerve cells are constantly sending tiny electrical messages down nerves to all parts of the body. Different parts of the brain control different parts and functions of the body. Therefore, the symptoms that occur during a seizure depend on where the abnormal burst of electrical activity occurs. Symptoms that may occur during a seizure can affect your muscles, sensations, behaviour, emotions, consciousness, or a combination of these.

What is epilepsy?

If you have epilepsy, it means that you have had repeated seizures. If you have a single seizure, it does not necessarily mean that you have epilepsy. About 1 person in 20 has a seizure at some time in their life. It may be the only one that occurs. The definition of epilepsy is more than one seizure. The frequency of seizures in people with epilepsy varies. In some cases there may be years between seizures. At the other extreme, in some cases the seizures occur every day. For others, the frequency of seizures is somewhere in between these extremes..

Epileptic seizures arise from within the brain. A seizure can also be caused by external factors which may affect the brain. For example, a high fever may cause a febrile convulsion. Other causes of seizures include: lack of oxygen, a low blood sugar level, certain drugs, poisons, and a lot of alcohol. Seizures caused by these external factors are not classed as epilepsy.

What causes epilepsy?

Idiopathic Epilepsy (Unknown cause)

In many cases, no cause for the seizures can be found. The abnormal bursts of electrical activity in the brain occur for no known reason. It is unclear why they start, or continue to occur. Genetic (hereditary) factors may play a part in some cases. People with idiopathic epilepsy usually have no other neurological (brain) condition. Medication to control seizures usually works very well.

Symptomatic Epilepsy

In some cases, an underlying brain condition or brain damage causes epilepsy. Some conditions are present at birth. Some conditions develop later in life. There are many such conditions. For example: a patch of scar tissue in a part of the brain, a head injury, stroke, cerebral palsy, some genetic syndromes, growths or tumours of the brain, and previous infections of the brain such as meningitis, encephalitis. The condition may irritate the surrounding brain cells and trigger seizures.

Some underlying conditions may cause no other problems apart from seizures. In other cases, the underlying condition may cause other problems or disabilities in addition to the seizures.


What triggers a seizure?

There is often no apparent reason why a seizure occurs at one time and not at another. However, some people with epilepsy find that certain triggers make a seizure more likely. These are not the cause of epilepsy, but may trigger a seizure on some occasions.

Possible triggers may include:

- Stress or anxiety.

- Some medicines such as antidepressants, antipsychotic medication (these lower the seizure threshold in the brain).

- Lack of sleep, or tiredness.

- Irregular meals (or skipping meals) which may cause a low blood sugar level.

- Heavy alcohol intake or using street drugs.

- Flickering lights such as from strobe lighting or video games.

- Menstruation (periods).

- Illnesses which cause fever such as flu or other infections.

How is epilepsy diagnosed?

You should see a doctor if you have had a possible seizure or similar event. Sometimes it is difficult for a doctor to confirm that you have had a seizure. The most important part of confirming the diagnosis is the description of what happened. Other conditions can look like seizures - for example, faints, panic attacks, collapses due to heart problems, breath-holding attacks in children.

Therefore, it is important that a doctor should have a clear description of what happened during the event. It may be that a person who witnessed your seizure may be able to give a more accurate description of what happened during your seizure.

There is no one test to confirm a diagnosis of epilepsy. However, tests such as brain scans, electroencephalogram (EEG - brainwave recordings) and blood tests may help to make a diagnosis.

- A brain scan - usually a magnetic resonance imaging (MRI) or computed tomography (CT) scan - shows the structure of different parts of the brain. This may be performed in some people.

- EEG - This test records the electrical activity of the brain. Special stickers are placed on various parts of the scalp. They are connected to the EEG machine. This amplifies the tiny electrical messages given off by the brain and records their pattern on paper or computer. The test is painless. Some types of seizure produce typical EEG patterns. However, a normal recording does not rule out epilepsy, and not all EEG abnormalities are related to epilepsy.

- Blood tests and other tests may be advised to check on your general well-being. They may also look for other possible causes of the event.

Although helpful, tests are not foolproof. It is possible to have epilepsy with normal test results. Also, if an abnormality is found on a brain scan, it does not prove that it causes seizures.

However, tests may help to decide if the event was a seizure, or caused by something else. It is unusual for a diagnosis of epilepsy to be made after one seizure, as the definition of epilepsy is recurrent seizures. For this reason a doctor may suggest to wait and see if it happens again before making a firm diagnosis of epilepsy.

What are the treatments for epilepsy?


Epilepsy cannot be cured with medication. However, with the right type and strength of medication, the majority of people with epilepsy do not have seizures. The medicines work by stabilising the electrical activity of the brain. You need to take medication every day to prevent seizures. Deciding on which medicine to prescribe depends on such things as: your type of epilepsy, your age, other medicines that you may take for other conditions, possible side-effects.

One medicine can prevent seizures in most cases. A low dose is usually started at first. The dose may be increased if this fails to prevent seizures. In some cases two medicines are needed to prevent seizures.

It is unusual to start treatment after a first seizure. A common option is to wait and see after a first seizure. If you have a second seizure within a few months, more are likely.

Medication is commonly started after a second seizure that occurs within 12 months of the first. However, there are no definite rules and the decision to start medication should be made after a full discussion with your doctor.

The type of treatment you will be given often depends on the type of seizures you have and also if you are taking any other medication.

Some points about medication for epilepsy include the following:

- Ask your doctor how long treatment is likely to be advised. This will vary from case to case. If you have not had seizures for several years, you may wish to try stopping medication. However, this depends on your particular type of epilepsy, as some types will need medication for life. Your life circumstances may influence the decision about stopping medication.

- Although the list of possible side-effects for each medicine seems long, in practice, most people have few or no side-effects, or just minor ones. Ask your doctor which side-effects are important to look out for. If you develop a troublesome side-effect it may be dose-related, or may diminish in time. Alternatively, a switch to another medicine may be advised.

- Medicines which are used for other conditions may interfere with medication for epilepsy. If you are prescribed or buy another medicine, remind your doctor or pharmacist that you take medication for epilepsy.

- Some medicines for epilepsy interfere with the contraceptive pill. A higher-dose pill or an alternative method of contraception may be needed.

Other treatments for epilepsy

- Surgery to remove a small part of the brain which is the underlying cause of the epilepsy. This is only a suitable option if your seizures start in one small area of your brain (this means it is only possible for a minority of people with epilepsy). It may be considered when medication fails to prevent seizures. However, there are risks from operations. Only a small number of people with epilepsy are suitable for surgery and, even for those who are, there are no guarantees of success.

- Vagal nerve stimulation is a treatment for epilepsy, where a small generator is implanted under the skin below the left collar bone. The vagus nerve is stimulated to reduce the frequency and intensity of seizures. This can be suitable for some people with seizures that are difficult to control with medication.

- The ketogenic diet is a diet very high in fat, low in protein and almost carbohydrate-free which can be effective in the treatment of difficult-to-control seizures in children.

- Complementary therapies such as aromatherapy may help with relaxation and relieve stress, but have no proven effect on preventing seizures.

What is the outlook (prognosis) for people with epilepsy?

The success in preventing seizures by medication varies depending on your type of epilepsy. For example, if no underlying cause can be found for your seizures (idiopathic epilepsy), you have a very good chance that medication can fully control your seizures. Seizures caused by some underlying brain problems may be more difficult to control.

The overall outlook is better than many people realise. The following figures are based on studies of people with epilepsy, which looked back over a five-year period. These figures are based on grouping people with all types of epilepsy together, which gives an overall picture:

- About 5 in 10 people with epilepsy will have no seizures at all over a five-year period. Many of these people will be taking medication to stop seizures. Some will have stopped treatment having had two or more years without a seizure whilst taking medication.

- About 3 in 10 people with epilepsy will have some seizures in this five-year period, but far fewer than if they had not taken medication.

- So, in total, with medication, about 8 in 10 people with epilepsy are well controlled with either no, or few, seizures.

- The remaining 2 in 10 people experience seizures, despite medication.

- A very small number of people with epilepsy have sudden unexplained death. The exact cause of this is unknown, but may be related to a change in the breathing pattern or to abnormal heart rhythms during a seizure. However, this is rare and the vast majority of people with epilepsy fully recover following each seizure.

A trial without medication may be an option if you have not had any seizures over 2-3 years. If a decision to stop treatment is made, a gradual reduction of the dose of medication is usually advised over several months. You should never stop taking medication without discussing it with a doctor.


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