If you have epilepsy, some of the brain’s nerve cells are overactive, which can cause various types of seizures. Epileptic seizures can be very different for different people, but in one and the same individual, the seizures are usually the same every time. Between the attacks, there is nothing to show that you are ill. If you suffer from major epilepsy, you may need medication to prevent seizures.
It is common to have only a few mild seizures throughout life, but some may have severe seizures every day. Many people who get epilepsy can avoid having more seizures with the help of drugs.
Symptoms of Epilepsy
The symptoms of an epileptic seizure come suddenly but are usually short-lived, from a few seconds up to a few minutes. They may be very different for different people, but in one and the same individual, the attacks are usually the same every time.
How the seizures get depends on what part of the brain the epileptic activity takes place. Therefore, epileptic seizures are divided into two main types:
- Generalized seizures, since large parts of the brain, are involved from the onset of the seizure.
- Focal seizures, which start in a limited part of the brain.
It is mainly in the case of so-called generalized seizures with cramps that you get severe and severe symptoms. You often lose consciousness without warning, become tense throughout your body and after a few seconds begin to twitch your arms and legs. In another type of generalized seizure, you can have short second-fast, intense muscle twitching, so-called myoclonus, in the arms, head or legs but without any influence of consciousness.
If you get a lighter form of generalized seizure, you will be absent for a few seconds and maybe stare blankly in front of you. After the attack, you do not remember any of it but may feel that you have “lost the thread” for a while. Such seizures are called absences, they usually debut during childhood and disappear into adulthood.
Focal seizures can both be experienced and look very different. Sometimes the person himself feels the influence on, for example, sight and hearing without the environment noticing the attack. Sometimes focal seizures trigger severe symptoms with attacks of rhythmic twitching in one half of the body. You can be conscious, but also completely or partially unconscious.
Focal seizures can sometimes develop gradually, from mild to severe symptoms. Such attacks can be initiated with an aura. You then feel that the attack has begun but the surroundings do not notice anything. You gradually become more affected and the surroundings may notice that you are absent or have muscle twitching. Such a seizure develops from focal seizure to a bilateral tonic-clonic seizure.
Between the attacks, everything is as usual
In epilepsy, you have direct symptoms and signs of the disease only as long as the attack lasts and a little while afterward. There is nothing between the seizures to show that you have epilepsy.
It is unusual for you to have a seizure when you seek care for your complaints. The doctor must, therefore, make his assessment without being able to see what symptoms you have. Furthermore, you can often have a memory gap and a lack of experience of the attack. Therefore, it is good if someone who saw the attack is present to describe what happened.
When should I seek care?
A severe epileptic seizure is a dramatic event. When this happens for the first time, an ambulance is almost always called and you are taken to the nearest emergency room. There, the healthcare staff checks that you have not received any injuries and an emergency investigation is done to see if treatment is needed against the triggering causes of the attack.
There may be causes other than epilepsy for seizures with transient unconsciousness, such as heart problems. When you recover from the attack, you have to go home. Sometimes you are called for supplementary examinations before you receive a new doctor’s visit for summary and follow-up. You will usually see a physician who is a neurologist, that is, a specialist in the disorders of the nervous system.
Less dramatic epileptic seizures may be, for example, attacks with symptoms from a body part or sensations. Such symptoms can be difficult to distinguish from other diseases. Most often you do not understand yourself that it is epilepsy attacks that trigger them. If you have strange attacks and are unsure of what caused them, you can contact a health care center for an assessment. If the doctor at the health center suspects epilepsy, you will receive a referral to a neurologist.
You can seek care at any healthcare center you want throughout the country. You also have the opportunity to have a regular doctor’s contact at the health center.
How can I prevent epilepsy?
It is usually not possible to affect the risk of contracting epileptic seizures yourself. It is sometimes heard that a young person has had epilepsy from intensive computer games. Most often it is a person with a tendency for epilepsy, who gets their first seizure after long nights with computer games and insomnia.
Circumstances may have contributed to the seizure occurring at that time, but computer gaming has not created epilepsy. The attack would probably have come sooner or later even without computer gaming.
What can I do for myself?
Many people with epilepsy find that seizures come easier in some situations. This is usually very individual, but lack of sleep is something that many people are sensitive to. Some suffer from stress and others relax when stressed. It is a widespread notion that flashing lights, such as those at discos, can trigger seizures. But that’s only true for a small part of everyone with epilepsy.
If you often have seizures, you can be helped by writing down the situations in which the seizures come. With the notes as a basis, you can together with your doctor see if there is any pattern. If certain situations are linked to an increased risk of seizures, it may be wise to try to avoid them, such as lack of sleep. A mapping of the disease can mean that you improve your seizure control. It is usually good to inform their relatives and workmates about the risks associated with the disease.
If you have any thoughts about what might trigger your seizures, you can discuss them with your doctor and nurse, not least to avoid misunderstandings. It is important that you do not avoid doing things you think are fun unless there are very important reasons. There is a risk of unjustified restriction and isolation due to epilepsy.
What can the environment do?
Once the seizure has started, not much one who has epilepsy can do himself. Therefore, it is important that people in the area know what to do in the event of an attack. Although some seizures look dramatic, most people go off on their own without causing any harm.
If you see someone having epilepsy, you can reduce the risk of that person being injured during the attack by a few simple steps:
- Loosen clothing that sits tightly in the neck.
- Put something soft under your head if the person who has had a seizure is on hard ground.
- Place the person in a stable lateral position when the cramps are over.
- Stay until the seizure is over so that anyone with epilepsy can tell how they want to be helped.
- It’s also good if you look at the clock so you know how long the attack lasted.
There are also some things you shouldn’t do:
- Do not put anything in the mouth of anyone who has an epileptic seizure. It can damage teeth and make breathing difficult.
- Do not try to hold back if an arm or leg of the person with epilepsy is cramping during the attack.
- If it is not known that the person has epilepsy.
- If the attack lasts five minutes or longer.
- If the person who has had seizures does not wake up properly when the cramps are over.
- If the person has been injured during the attack.
These are general guidelines, but it varies widely from person to person how the person with epilepsy needs to be taken care of in conjunction with an ongoing seizure.
Treatment of Epilepsy
The fact that you have had an epileptic seizure or been diagnosed with epilepsy does not mean that you should automatically start treatment immediately. The treatment for epilepsy consists primarily of drugs, so-called antiepileptic drugs. These medicines are preventative and reduce the risk of seizures as long as you take them. But the medication does not cure epilepsy and should not be construed as a treatment course you take to recover.
The benefits of medical treatment must be weighed against the disadvantages. If you have only had seizures in connection with severe provocative circumstances, no long-term treatment is needed. Examples of provocative circumstances are a number of acute illnesses that affect the brain for a limited time, such as extremely low blood sugar or high levels of salt in the blood. Also, in the case of a first unprovoked attack, there is an imminent risk of new attacks. Of all those who have had a first unprovoked attack, almost half have relapsed. Therefore, it is common for you to receive treatment only after two unprovoked seizures. Investigations have shown that the risk of a third attack is at least 60 percent.
One reason to refrain from drug treatment is if the seizures have been very mild. On the other hand, it may sometimes be justified to start treatment after an initial seizure if the risk of multiple seizures is considered very high, or if there are other special reasons. If injuries occurred during the first seizure with convulsions and unconsciousness, you as a patient may want to avoid serious consequences in the case of new seizures. The wishes vary between different individuals. It must also be considered in the discussion between you and your physician when deciding on drug treatment.
Most people who have epilepsy are treated with drugs
Medicines called antiepileptic drugs are the basis of the treatment of epilepsy. Most people who have been diagnosed with epilepsy will begin with such drug treatment. The purpose is to reduce the risk of seizures so that you can live a normal life.
Surgery a possibility in severe epilepsy
Although most people who get epilepsy are helped by medication, many continue to have seizures despite intensive drug treatment. Some may have seizures at year-long intervals, while some may have such severe epilepsy that they receive seizures several times each day. Surgery may be an option for some of those with severe epilepsy. Before surgery, several things need to be carefully examined.
Before surgery, a comprehensive investigation is performed in several steps to find out from which part of the brain the seizures are coming. In some hospitals, there are special teams, among other things, for examining surgical epilepsy treatment. This requires you to be hospitalized for a week to undergo advanced X-ray examinations, video seizure registration, and EEG. It is sometimes required that the doctor record the seizures with EEG electrodes placed through an operation on the surface of the brain or inside the brain to find out where the seizures start. Neuropsychological tests also map the various functions of the brain. A psychologist who specializes in testing brain functions then examines, for example, memory and language.
The results of the various studies are evaluated by a group of experts with different specialist knowledge. It can take a total of six months before they reach a decision. Sometimes the investigation leads to the experts not being able to recommend surgery.
However, if it is appropriate to operate, the results can be very good. Many become completely free from seizures after an operation. The procedure itself may take a few hours and you may need to stay in the hospital for about a week. Then you may need to be on sick leave for several months to recover.
In some cases, it is inappropriate or impossible to remove the part of the cortex that causes seizures. Then there are other surgical methods where the neurosurgeon cuts off the dissemination pathways for the seizure activity and prevents it from spreading across the brain. Such an intervention can make the attacks easier.
Other methods of treatment
In addition to drug treatment and epilepsy surgery, there are also some other treatment methods that are used in some cases even though doctors do not fully understand how the methods work. This includes so-called vaginal nerve stimulation, VNS, which is sometimes offered if you have difficult-to-treat epilepsy that cannot be considered for regular epilepsy surgery. The method is based on affecting the brain by stimulating a nerve on the neck with electrical impulses. A small battery impulse generator is operated under the clavicle and through a cord under the skin, electrical impulses are passed from this pacemaker to the nerve on the left side of the neck. The doctor can program the pacemaker to deliver pulses of varying frequency and strength. It is not clear how, but about half of the people with severe epilepsy who are allowed to try VNS have fewer seizures by the method.
Some children with severe epilepsy may also have fewer seizures if they are undergoing special dietary treatment, called the ketogenic diet. You can try a ketogenic diet when other treatment options have failed. The treatment, which involves an extremely strict high-fat diet, requires a very detailed instruction and control with very careful monitoring of what the child eats. Ketogenic diet places great demands on commitment from close relatives and support from a team of specialists such as dietitians, physicians, and nurses. A milder variant of dietary treatment is the modified Atkins diet, also called MAD, which can sometimes be considered for adults. In this case, too, help from a dietician is needed, in collaboration with doctors and nurses.
Urgent treatment is required if the attack does not go on
In most cases, an epileptic seizure of itself stops within a minute and causes no bodily harm. No special treatment is needed to stop the attack. But it may happen that a seizure pulls out on time and does not bring along or that seizure follows a seizure without you clearing up in between.
If an attack lasts longer than five minutes, it is usually called status epilepticus, which is a serious condition. If it is a so-called tonic-clonic seizure, it can even be life-threatening if it goes on for too long. For this type of seizure, you must, therefore, receive treatment that breaks it. To stop the attack, the drug is usually used diazepam, which can be given as a syringe directly into the blood of medical personnel or as so-called enema given in the rectum. The drug has a fast effect and stops the seizure activity that goes on in the brain’s nerve cells. The attack usually goes on for a minute after a syringe and almost as quickly after an enema.
If you have had prolonged seizures several times, you will usually be given medication, which a relative can give according to your doctor’s instructions. There are various alternatives to seizure therapy that can be given by relatives, most commonly Buccolam given in the mouth or Diazepam in the enema. If this does not help, you should immediately go to the hospital, and already in the ambulance, you can get a syringe of diazepam directly into the bloodstream for even faster effect.
All types of epileptic seizures can be prolonged. It is not really as urgent to get treatment for mild types of long-term seizures as for severe seizures. How you should be treated therefore looks slightly different in other types of seizures and must be adapted from person to person. If you have epilepsy, it is important to ask your doctor what applies to your own type of seizures.
Epilepsy treatment during pregnancy
Women with epilepsy who want to have children should plan pregnancies in consultation with their doctor as some epilepsy drugs may pose a slightly increased risk of birth defects. On the other hand, uncontrolled seizures during pregnancy can harm the fetus and therefore it is also important for fetal health to continue taking its epilepsy medication during pregnancy. It is good to try out the best possible treatment with your doctor well in advance of pregnancy. Maybe the dose should be adjusted, sometimes it may be appropriate to consider changing the drug. This may take time, sometimes up to a year, but all major changes should be made well in advance of pregnancy.
If you become pregnant, you should not take the risk of switching medications and you should definitely not stop taking the medicine because you discover that you have become pregnant. A sudden interruption in treatment can cause several epileptic seizures that can be harmful to both the pregnant woman and the fetus. During pregnancy, you often have a little closer contact with your epilepsy doctor. The dose of the drug may need to be adjusted and sometimes you will receive special vitamin supplements
In general, pregnant women with epilepsy are also checked in specialist maternity care. There you will undergo a special ultrasound examination to detect any birth defects.
The vast majority of women with epilepsy have a very normal course of pregnancy and give birth to fully healthy children, although the risks associated with pregnancy are somewhat greater.
Epilepsy involves uncertainty
Because you never know when an attack is coming, epilepsy often means you may feel insecure. This can create a fear that will help you avoid situations where a seizure would feel particularly embarrassing or have other troublesome consequences.
An attack can look very dramatic and be more frightening to the person watching than to the person who is suffering. This, of course, affects close relatives of those with epilepsy.
The disease may mean that you have to change profession
Anyone with epilepsy may not drive until one year after their last seizure. Similar provisions also apply to other vehicles and for professional drivers, the rules are even stricter. This means that, for example, professional drivers and pilots who have epilepsy must retrain.
There are other tasks that are inappropriate because a seizure would endanger one’s self, for example, unprotected work on scaffolding at high altitude. You may also sometimes need to make some adjustments in the workplace or at home to reduce the risk of injury if you have an attack. This is especially true if you have severe epilepsy.
All of this can entail demands for restructuring and great stress for the person receiving the disease. At the same time, it is important to emphasize that most people with epilepsy can continue to live as usual and function in their professional and family roles.
Right to information
The healthcare staff should tell you what treatment options are available. They should make sure you understand what the different options mean, what side effects are available and where you can get treatment. That way you can help decide which treatment is right for you.
In order for you to be active in your care and make decisions, it is important that you understand the information you receive. The healthcare staff is obliged to make sure that you do so. Ask questions. You can also ask to have the information written down so you can read it peacefully.
What is the cause of epilepsy?
Epilepsy can be caused by, among other things, congenital injuries and illnesses, head injuries, brain tumors or that you have previously had a stroke.
For about half of all people with epilepsy, doctors can find no cause. Although the disease may be hereditary to some extent, the risk of passing it on to your children in most cases is very small.
How common are epileptic seizures and epilepsy?
Epilepsy may come at any time, but the risk is greatest during the first year of life and after the age of 70. If a child has epilepsy during his or her first year of life, it is often due to congenital illnesses or injuries that have already occurred during pregnancy.
In the elderly, the most common cause of stroke has been in the past, but dementia can also lead to epilepsy.
Epilepsy is more common in people with intellectual disabilities and CP injuries. This is because there is a common underlying injury in the brain that leads to both epilepsy and other disabilities.
Nearly one in ten people will suffer epileptic seizures at some point in their lives. In most cases, it is a provocative attack that you only get once.
For some, the seizures go over, others need medicine throughout their lives
For at least half of everyone who gets the disease, epilepsy heals. If you have not had a seizure for several years, you can often gradually reduce the medication you take for epilepsy and then stop treatment without the seizures coming back. But sometimes you need life-long treatment and sometimes epilepsy is so severe that you continue to have frequent seizures despite intensive treatment. Every tenth person with epilepsy has seizures at least once a week. Often it is clear already during the first year whether epilepsy is light or difficult to treat.
How am I affected by epilepsy?
Certain seizures can cause you to become unconscious and if you fall handless there is, of course, a risk of injury. If you have seizures frequently, you may experience tooth damage and fractures of the arms, legs, vertebrae, and skull. You can also get burns if, for example, you have a seizure while cooking.
If you have mild epilepsy you are rarely injured. Many people with severe epilepsy, on the other hand, can often feel ill. A few can have seizures so often that the brain has a hard time recovering. Such a very severe epilepsy can help make it difficult for you to learn things and have problems with memory.
Losing control during a seizure is the clearest indication of whether epilepsy is mild or severe. Seizures with loss of consciousness can come without warning and cause you to do things that you have no control over. Sometimes you are not even aware that you had a seizure after regaining consciousness.
What happens in the body?
The brain is made up of billions of nerve cells that work with electrical signals. The different nerve cells interact in complicated networks and communicate with each other by releasing chemical substances, so-called signal substances.
An electrical impulse in a nerve cell causes a certain signal substance to be released. The substance affects specific recipients, called receptors, on nearby nerve cells so that the electrical activity in these cells changes.
There are different types of signaling substances and different forms of receptors. Some create increased electrical activity while others have the opposite effect. These activities are the basis for, for example, being able to think, feel, hear, see and move.
The state of the brain determines the function of the nerve cell
The nerve cells in the various parts of the brain are specialized and have different functions:
- For example, the rear left and right parts of the pan lobe control movements. Electrical activity in nerve cells in the left or right part of this area creates a movement in the opposite half of the body.
- The brain lobe of the brain is the receiving center for emotion. Electrical activity in nerve cells in the left or right parts of the brain lobe is because you touch something with the opposite side of the body. The activity makes you feel this impression by feeling.
- In the visual cortex of the neck lobe, the brain receives the impulses transmitted from the retina of the eye. Electrical activity in the nerve cells of the visual cortex means that you see what the retina has recorded.
- In the temple lobby, for example, there are networks of nerve cells that are centers of memory, hearing, emotion, and sense of smell. Activity in these nerve cells is linked to memory images as well as hearing, sensory and smell experiences.
When the brain is functioning properly, there is a balance between stimulating the nerve cells and holding them back. If you have epilepsy, this balance is disrupted. Some nerve cells are then overactive and you get an epileptic seizure when the brain loses control of this overactivity.
A first epileptic seizure does not mean you have the disease epilepsy
All diseases and injuries that you get in the cerebral cortex can disrupt the balance between the activities of the nerve cells and thus cause you to have an epileptic seizure.
The seizure may be closely related to acute injury or illness, for example in connection with fever in young children who can cause fever cramps. You may also have seizures in connection with stroke or withdrawal after a period of drinking a lot of alcohol. Such epileptic seizures are usually called provoked and then you do not have epilepsy.
The risk of new seizures is small when the fever has passed or when it has passed a few days after you have had a stroke.
More about different types of seizures
Primary generalized seizures
These attacks are divided into
- tonic-clonic seizures
- myoclonic seizures also called myoclonus
The tonic-clonic seizure is the most well-known form of primary generalized seizure. You lose consciousness without warning, become tense throughout your body and after a few seconds, it starts to jerk in your arms and legs. The attack goes on within a few minutes and you wake up incrementally. This type of attack was formerly called grand mal, a term still used by many. You wake up, feel heavy in your head, may have workouts in your arms and legs and find that you may have kissed you orbit your tongue. You have no memory of the attack itself and often wonder what happened.
This type of seizure, formerly called petit mal, is another form of primary generalized seizure. These attacks last only a few seconds and do not have as many and clear symptoms. You become absent, staring blankly in front of you and not answering accusations. You do not remember anything about the attack afterward, but you may feel like you have dropped the thread. Absences can come several times a day.
In the case of myoclonic seizures, you can be fully conscious but get intense repeated muscle twitching in the arms, head or legs. It usually tugs on both sides of the body at the same time. Myoclonic seizures usually come in the morning and afterward you can tell how the seizure felt. Most people have experienced similar muscle twitches before falling asleep, but that doesn’t mean you have epilepsy.
Children may have additional forms of primary generalized seizures that are uncommon and are therefore not touched more closely here.
This type of attack is divided into:
- Focal seizure without the influence of consciousness. You remember everything that happened during the attack.
- Focal attack with reduced consciousness. You get a memory slot for what happened during the attack.
- A focal seizure that spreads and affects the whole brain, so-called secondary generalization.
The symptoms depend on where the attack is going on in the brain
In focal seizures when you are fully conscious during the seizure, the symptoms depend entirely on the area of the brain that is affected. Seizures due to electrical overactivity in the back of the forehead allow you to get attacks of rhythmic twitching in the opposite body half. The reason is that this particular area controls muscle activity on the opposite side. If the activity during the attack goes a little further in the back of the brain, in the brain lobe that is the center of feeling, the feeling is affected. The attacks then become attacks of groans or numbness in the hand, arm or leg depending on which parts of the brain lobe are involved. Similarly, you experience seizures from the visual cortex in the neck lobe as vision phenomena, perhaps attacks when you see a light bulb or a flashing light. When you have seizures from the temples, you can experience short sequences of familiar memories or sense of smell. You can thus have epileptic seizures that are not visible on the outside but that you only experience yourself. Such an attack called aurora and can cause a variety of symptoms. Some examples of auras are suddenly inexplicable and often unpleasant smelling or taste sensations as well as sight or hearing experiences. The Auran can thus have a very different character in different people, which is because the attacks start in different parts of the brain. For the individual, the auras tend to be identical in repeated attacks. which is because the attacks start in different parts of the brain. For the individual, the auras tend to be identical in repeated attacks. which is because the attacks start in different parts of the brain. For the individual, the auras tend to be identical in repeated attacks.
Sometimes you lose consciousness
Focal seizures where you completely or partially lose consciousness are spread to slightly larger parts of the brain so that consciousness is affected. It can lead to you being shielded, not perceiving the surroundings and not remembering the attack. The person standing next to you notices that you are not answering, maybe staring straight ahead and picking with your hands or smacking your lips. All this happens unconsciously and you do not remember any of this after the attack. Such an attack can begin with twitching in one hand, or as an aura before the attack, activity spreads so that consciousness is affected.
Focal to a bilateral tonic-clonic seizure
If the activity of the focal seizure is spread further, it may affect the entire brain, the seizure then becomes a tonic-clonic seizure called a secondary generalized seizure. If you have this gradual development of a seizure, you can sometimes remember afterward the initial symptoms before the consciousness was affected and you remember no more. An initial aura indicates that the attack has a focal onset and is not primarily generalized. The Auran is often the same from attack to attack in the same person and you recognize it as your typical penchant. Still, it may be difficult to describe its content to others.