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Epilepsy is sometimes referred to as a 'seizure disorder.' It is a long-term medical condition characterized by seizures. The nature and seriousness of the seizures varies between individuals. Seizures may cause changes in behaviour, awareness, movement, or sensation. An epileptic seizure is caused by a brief electrical disturbance in the brain.
Many people only think of a grand mal (generalized seizure) when they picture a seizure. A convulsive or grand mal seizure involves a person blacking out, falling, getting stiff and then shaking all over for a minute or two. Although some seizures do result in an individual having a convulsion, depending upon the area of the brain that is affected, the way seizures look from one person to another can be very different. For instance, one kind of seizure may result in someone staring off into space for a few moments. Another type may result in someone’s arm or leg shaking for a minute or two. Another might make a person feel very angry and make them see things much differently than they really are. Yet another may cause someone to suddenly fall to the ground. Some seizures result in lip smacking or other behaviours the person may be unaware of doing. It is important to remember that most seizures are not emergencies and people having them do not usually need emergency care.
All people have a point at which they could have a seizure, given the right conditions. This is called a seizure threshold. Young children tend to have lower seizure thresholds than adults do. This is probably why some children have seizures when they have fevers (three to four percent of children). Many children outgrow epilepsy as their brains and nervous systems grow and mature. In about half of people with childhood epilepsy, seizures completely disappear.
In 75 to 80 per cent of cases of childhood epilepsy, no certain cause is found. This is called idiopathic epilepsy. In the remaining cases, there are a variety of known causes. These include birth injury, and infections that affect the nervous system such as meningitis or encephalitis – possibly related to measles or other diseases.
Epilepsy can result from a head injury, brain tumor, stroke, alcohol or drug abuse, or exposure to poisons such as mercury. There are some problems with metabolism (the chemical reactions that go on in the body) that can cause seizures. One example is diabetes, which affects the level of sugar in the blood.
Some people have seizures that cause behaviour changes and look like epileptic seizures, but are not. These are known as non-epileptic seizures. Non-epileptic seizures are not caused by abnormal electrical disruptions in the brain, the way epileptic seizures are.
There are two different kinds of non-epileptic seizures: physiologic and psychogenic.
The physiologic seizures can be related to a number of different physical conditions that interfere with the oxygen or blood supply to the brain. They can also be linked with sleep or movement disorders. The psychogenic seizures, on the other hand, are caused by extreme stress or emotional shock. In the past, psychogenic seizures have often been called hysterical seizures or pseudoseizures. This implies fakery. It is now well understood that these events are serious health concerns and that people who have them are not 'fakers.'
After someone has a seizure, the goal is to find the cause. Along with a careful medical history and physical exam, there are tests that are helpful in finding the cause of seizures. Blood tests are required to rule out metabolic causes such as low calcium in the blood.
An electroencephalogram (EEG), a test that records the electrical activity of the brain, is also required. Some kinds of seizure disorders, or epilepsies, have very typical EEG patterns. An EEG can determine the area of the brain where the seizures are happening.
Detailed descriptions of the seizures can also be helpful. The following questions will usually be asked.
Other common tests include magnetic resonance imaging (MRI) or computerized tomography (CAT or CT). These tools provide pictures of the brain that help find anything unusual such as bleeding or a tumour.
Epilepsy can affect sexual development, the menstrual cycle, fertility, how well birth control works, pregnancy, development of the unborn baby, and labour. Caring for a child can also be a major challenge for women with uncontrolled seizures.
Seizure patterns can change with changes in the female hormones estrogen and progesterone. This can occur at puberty (maturation) and at the time of menopause (when menstruation ends). It can also happen at ovulation (when an egg is released and the woman is fertile), and at the beginning of a menstrual period. These hormones act on brain cells in the temporal lobes of the brain, common areas of the brain for seizures to begin. Many women with epilepsy have irregular periods and cycles where they don’t release an egg. This decreases their fertility. However, if sexually active and not planning a pregnancy, a woman with epilepsy should talk to her doctor or nurse about the best methods of birth control for her. Some anti-epilepsy drugs (AED) can decrease the effectiveness of the birth control.
Due to the possibility of unplanned pregnancy, all women with epilepsy who could become pregnant should take a folic acid supplement (a B vitamin), in an amount up to four milligrams per day. This is to lower the risk of possible birth defects. Over 90 per cent of women with epilepsy will have normal healthy infants but, compared with the general population, their children are more likely to have problems.
Women should talk to their health care providers when planning a pregnancy. They should be followed closely through this period to help prevent any complications. Women who become pregnant while taking anti-epilepsy medications are encouraged to call the AED pregnancy registry at 1-888-233-2334 (North American wide). This is to help with research on the possible risks of taking these medications through pregnancy.
Seniors may experience seizures that are often not recognized as being seizures. People just think the symptoms are a part of aging. Examples are missed periods of time, confusion and temporary unusual sensations. If there are concerns, a doctor should be consulted. About half of the time no obvious cause is found. Stroke is the most common reason. Anti-epilepsy medications usually work to control the seizures in seniors. It is most important that the treating doctor be aware of other conditions the person may have. The doctor should also be aware of any medications being taken (prescription and over-the-counter) so that reactions between drugs can be prevented
Finding the right medication - one that controls seizures without bad side effects – can be a challenge. People react differently to medications and what works for one person may not work for another. A number of medications or combinations of medications may need to be tried before the balance between seizure control and side effects is reached.
Medications should be taken as prescribed. Most AEDs are taken just once or twice each day. If a dose is missed, it is important not to double the next dose unless these are the instructions from a doctor. How a missed dose is handled depends on the particular medication, and a healthcare professional should be consulted. It can be helpful to put a reminder on the fridge, use a dosette, or have the pharmacist bubble pack the medications. Prescriptions should be filled regularly so that the person doesn’t run out. AED medications should not be stopped abruptly as this may cause serious seizures.
For some AEDs blood tests are done to monitor the amount of medication in the bloodstream. This helps the doctor determine the right dose. Drug level testing is done initially when the medication is first introduced and then if seizures aren’t being controlled or if the person is experiencing side effects.Blood levels are only done for some AEDs.
Trade name drugs are those researched and developed by pharmaceutical companies. Lower cost alternative or generic medications, which are manufactured by different companies, contain the same active ingredients as trade name drugs, but may look different or work slightly differently. Many drug plans will only cover generic medications because they are less costly. It is important that people with epilepsy find out what their plans cover. Check with the physician if there is going to be a change in brand as the effectiveness of the medication for a particular individual may be affected. We advise patients to always request the same brand when refilling their prescriptions.
It is very important that the treating doctor is aware of any other medications or treatments a person may be taking. This includes over-the-counter (non-prescription drugs), herbal remedies or alternative therapies.
Epilepsy surgery is considered a possibility when a person’s seizures cannot be successfully treated with medications, and when the seizures have a very negative influence the person’s life. The seizures must start in a part of the brain that can be removed without leaving the person’s speech, sight, or memory damaged. Special tests must be done before the surgery to be sure the risks of these problems are reduced. After surgery, some people may still have seizures, but often they are more easily controlled by medications. Epilepsy surgery is complicated and is generally only done in major centers in Canada.
Another kind of surgery for seizures that are hard to manage is vagus nerve stimulator implant. This involves a small device, like a pacemaker, being placed in the chest wall. Thin wires are threaded under the skin and wrapped around the large vagus nerve in the neck. Regular pulses of electrical energy are sent up from the battery to the brain by way of this nerve. These pulses are believed to stop or decrease the number of seizures.
The effect of having epilepsy on people’s quality of life depends on many of the following factors.
Laws related to driving with epilepsy vary from province to province. Generally a person must be free of seizures that result in a loss of awareness for a period of one year, in order to obtain or regain a driver’s license. However, there are some situations, such as a change in medication, which may be treated differently. People who only have seizures associated with sleep may also qualify for a driver’s license.
One of the biggest problems faced by adults with epilepsy is not enough or no employment. If someone is able to do a job and it is safe for them to do, they should not be denied the opportunity. Of course, depending on the type of seizures, working with some kinds of machinery or at heights might not be advisable.
Some people don’t inform employers or co-workers that they have epilepsy until a few months into the job. Their reasoning for this is to give them time to show their employer they are trustworthy and can do the job, and to develop some friendships. They are afraid they will be rejected if they tell others they have epilepsy too soon.
Employers and co-workers should be aware of the epilepsy. If a seizure occurs, they will know what is happening and can provide proper care and support. Many of our patients wear medical alert bracelets, so others will know epilepsy is the cause of a seizure.
In most cases, first aid consists of keeping the person safe by clearing the area of hard or sharp objects that could cause injury. Clear away onlookers to respect the person’s privacy. During convulsions, do not restrict the person’s movement. Offer gentle guidance, if necessary to protect from injury. Loosen tight clothing, especially around the neck, and place something soft under the head. Do not try to put anything in the mouth, between the teeth or try to hold the tongue (it cannot be swallowed). Turn the person on their side. After the convulsion, stay with the person and give any help needed.
Do not automatically call 911. Call for medical help only if the seizure goes on for more than five minutes or if the person has repetitive seizures with no recovery in between.
Watching someone have a convulsion can be frightening. If people know the basic first aid needed, they will not feel helpless, wondering what to do. They will be able to offer help and comfort to the person. For these reasons, everyone should take a first aid course from St. John Ambulance or other recognized organization.
Local epilepsy associations
American Epilepsy Association
Those who have family members or friends with epilepsy may worry about their safety and well-being. They may also experience feelings of helplessness about not being able to prevent or stop the seizures. Sometimes lifestyle adjustments may be needed to accommodate the epilepsy. It is important to remember that people with epilepsy have fewer seizures when they lead active, productive lives. The highest possible quality of life is important for everyone.
Fifty years of research into public understanding of epilepsy shows that awareness is increasing. However, there is still a long way to go before those with epilepsy are fully accepted in the community. People who have epilepsy need understanding and acceptance of their particular challenges.