Worthwhile to know about epilepsy

Epilepsy – what’s that?

Epilepsy may appear whenever in life and to anybody. There are at least 60 000 people in Sweden who have epilepsy. It means that every now and then they get epileptic seizures. These seizures are different from one person to another, from one or a couple of seizures during the whole life to several seizures every day. Epileptic seizures are caused by temporary disturbances in the nerve cells of the brain. The consequence is an epileptic seizure, whose appearance depends on where in the brain the discharge occurs. Epileptic seizures always occur very suddenly. They last from seconds to minutes and cease by themselves. Most of the time, the conscience is more or less influenced during the seizure.

Major epileptic seizures

During major epileptic seizures (tonic-clonic seizures, grand mal), the person suddenly becomes unconscious, falls and gets spasms (convulsions). The seizure usually lasts for three to five minutes. Breathing difficulties occur initially, which may turn the person’s face blue. Then, it takes about an hour until twenty-four hours before the person has recovered completely, often after sleep. Physical injuries may occur when falling.

Absence seizures

Absence seizures (petit mal) mostly occur among children and cause a few seconds of absence and interruption of all activities. The person does not fall, however. Absence seizures may occur several times a day.

Astatic-myoclonic seizures

The astatic-myoclonic seizures mean a sudden loss of the capability of standing. The person falls headlong, usually with physical injuries as a result. This type of seizures is more frequent in persons with multiple disabilities.

Complex partial seizures

During complex partial seizures (psychomotor), the conscience is obscured. The absence is combined with either psychological experiences (visual, auditory or gustative hallucinations), or motor phenomena (simple movements, chewing, clicking). The person does not respond when spoken to, but does not fall. The seizures last for up to a good minute, but in the same way as with absences and astatic-myoclonic seizures they may develop into tonic-clonic seizures.

Causes

Epilepsy is caused by a permanent or occasional damage to the brain. The extent of the damage varies. For most people with epilepsy, the damage does not give any other symptoms than the risk of epileptic seizures. If the damage is more extensive, there may be symptoms also between the seizures, for instance in the form of a neurological handicap (paralysis, speech impediments etc.), or mental handicap. In certain cases, the damage or the disturbance is so small that it cannot be discovered even by the most sensitive examinations. The damage could have many causes. Everything that can damage the brain could cause a risk of epileptic seizures, for instance damages during prenatal life or during delivery. Cerebral haemorrhage and cerebral ischemia, tumours, poisoning (alcohol) and traffic injuries are other examples of causes.

Medical investigation

The epilepsy diagnosis is made from the description given by the patient or witnesses of the seizure. In order to try to determine the cause, a neurological examination with the complete history of the disease (anamnesis) is carried out, as well as laboratory research, primarily EEG, where the electric activity of the brain is registered, and CT or MRI scans, which show any damages to the cerebral structure. Treatment of a major seizure A person who has an epileptic seizure in a public place should typically be taken to hospital for practical reasons, even if it is not necessary from a medical point of view. Most of the seizures in fact cease by themselves. Transport to hospital is necessary, however, if the seizures do not stop, if there have been injuries or if it is unclear whether or not it is actually an epileptic seizure. In the case of tonic-clonic seizures, the person should be protected against injuries in the best possible way, for instance by putting something soft under her/his head. However, nothing should be inserted in the person’s mouth, as that might harm more than it helps. You should stay with the person until she/he can manage by her/himself.

Treatment to prevent a seizure

The medical treatment is usually pharmacological. Around fifteen different medicines are available. It may take long time to determine the most suitable medicine. The goal is to achieve the best possible protection against the seizures without side effects. The treatment continues for a long time. It does not cure the injury causing the seizures. Full recovery from the seizures is obtained in 60-70 per cent of the cases. Another important part of the treatment is the information about epilepsy, both for the person who has got the seizures and for those around her/him. It is important to make the person feel that she/he is not an “epileptic” but the same person as before, but with the difference that she/he runs the risk of having epileptic seizures. Repeated oral and written information is necessary here. Contact with other people in the same situation, for instance through an epilepsy society, is often valuable. An epileptic seizure may quite often be provoked by external circumstances, for instance fever, which is particularly frequent in children. Other risk factors include lack of sleep, psychological or physical stress or alcohol consumption. The number of seizures may also increase due to anxiety for the possible consequences the seizures might have for family relations or friends and for the possibility of getting a driving licence or a job. It is of great importance to map out, individually and accurately, possible risk factors and then to try to eliminate or diminish them.

Attitudes

For most people with epilepsy, the seizures occur so rarely that the seizures are not the biggest problem in themselves. These people might live a practically ordinary life, as it is unusual with problems between the seizures. Unfortunately, the real difficulty is instead the often negative treatment from people around them, authorities, schools and employers, often due to ignorance and fear. Therefore, it is important to give an intense and objective information about epilepsy.

School, work, family and leisure time

Most children and young people with epilepsy go to an ordinary school and can choose the education they want with few exceptions, such as professional driver, security service and similar jobs. If the epilepsy is serious with high frequency of seizures or if there are several disabilities, special education is necessary, and later work subsidized by the state or in a protected environment. Leisure time activities can usually be chosen without restrictions. There is no general obstacle for people with epilepsy to start a family.

The Swedish Epilepsy Association

The Swedish disability movement consists of about 400 000 members. Within this community, The Swedish Epilepsy Association works with the special problems that concern people with epilepsy. This association is a community of more than 40 local and regional societies with a central office in Sundbyberg and a board elected by the members. The association receives state subsidies as well as part of the annual fee required by the societies. Most of the more than 4 000 members either have epilepsy themselves or are relatives, but persons who work professionally within epilepsy care are also members.

Local society work

The main task of the local societies is to give information in different ways – courses, study circles and so on - to their members about epilepsy and epilepsy rehabilitation, but also to give members and their relatives opportunities of relaxation and recreation. Another fundamental task of the societies is to provide the general public, staff groups within medical care and education, authorities and politicians with information about epilepsy.

Association work

The Swedish Epilepsy Association in different ways gives support to the work of the local societies: production of written or video information material, arrangement of national and regional courses and conferences for the officials and the informers of the societies, cooperation when forming new societies and, not least, informal contacts with the societies, including discussions about the everyday work. The Association also performs considerable political and ideological work within medical care in order to improve care and rehabilitation for people with epilepsy and to stimulate increased research. For that purpose, the Association has a special research fund, The Epilepsy Foundation.

Information

The epilepsy is a concealed disability, still surrounded by erroneous conceptions and prejudices. Increased knowledge through objective information is the only way to change this situation. Therefore, the Association gives great importance to spreading correct information about epilepsy to different groups in different ways: pamphlets with general information and about specific issues, video films or material for study circles. Informers are trained and the journal “Svenska Epilepsia” (The Swedish Epilepsia) is published four times a year.

Identity mark

The logotype of the Association is a candle flame, also found on the identity mark used by many people with epilepsy. The mark gives information to people in case of epileptic seizures in a public place. The Association also supplies seizure and medication calendars.

Become a member

Your membership means that our possibilities of contributions increase. Please contact the nearest local society or the Association office in Sundbyberg.

Svenska Epilepsiförbundet
(The Swedish Epilepsy Association), Box 1386, SE 172 27 SUNDBYBERG
Phone 08 - 669 41 06
Fax 08 - 669 15 88
Banktransfer (Bankgiro) 181 - 5554
Banktransfer (Plusgiro) 19 55 66 - 5
www.epilepsi.se E-mail: info@epilepsi.se

The Epilepsy Foundation
Bank transfer (Bankgiro) 5796 - 5444
Bank transfer (Plusgiro) 5 96 05 - 6