In epilepsy, certain areas of the brain or all areas of the brain are overactive, sending too many signals. This results in seizures, sometimes also referred to as epileptic fits. Epileptic seizures can take different forms. They may cause only a few muscles to twitch, for instance, or they may cause your whole body to convulse (shake uncontrollably) and lead to loss of consciousness.
Epilepsy can arise at any age. Some people have their first seizure in childhood, and others have their first seizure in older age. There are usually no physical symptoms in between seizures. But the constant fear of having another seizure may affect your work and private life.
Medication can help to prevent seizures and maintain a good quality of life. Unfortunately, medication doesn't always help, though: About 3 out of 10 people still have regular seizures. This makes it particularly difficult for them to live with the condition.
Epileptic seizures can vary greatly from person to person. Some only last a few seconds and go unnoticed, some only affect one arm or one leg, whereas others affect the whole body. Sometimes people become unconscious, sometimes they are mentally absent for a short while, and sometimes they remain fully conscious.
Epileptic seizures do not usually last very long. If a seizure lasts longer than five minutes, it is referred to as 'status epilepticus.' This is a medical emergency requiring immediate treatment with medication. People may also have several seizures within a short space of time.
There are two main categories of epileptic seizures:
- Generalized seizures
- Partial (focal) seizures
Generalized seizures affect the whole brain. They aren't necessarily worse than partial seizures. But generalized seizures are more likely to lead to loss of consciousness and make your whole body convulse.
There are different types of generalized seizures:
- Tonic seizures: The person's arms and legs become rigid and stiff. This kind of seizure usually passes quite quickly and doesn't always affect your state of consciousness.
- Atonic seizures ("drop attacks"): Here the muscles in one part of your body suddenly become limp. As a result, your chin might drop down onto your chest, or your legs might give way, for instance. You may also briefly become unconscious and fall.
- Clonic seizures: Large muscle groups – for instance in the arms or legs – jerk in a slow rhythm. This is usually accompanied by loss of consciousness.
- Myoclonic seizures: Individual muscle groups twitch rapidly. Your state of consciousness is usually not affected.
- Tonic-clonic seizures (sometimes called "grand mal seizures"): Your whole body convulses and twitches, and you become unconscious.
- Absence seizures (sometimes called "petit mal seizures"): In this mild type of seizure, people suddenly lose awareness for a brief moment.
Partial (focal) seizures
Partial seizures arise in a certain part of the brain. The symptoms will depend on the function of that part of the brain, and may include things like twitching of the arm (motor disturbances), abnormal sensations (sensory disturbances) or changes in vision (visual disturbances).
When people have partial seizures they may experience abnormal sensations, behave oddly, lose awareness, or hear, see or smell things differently. They may also feel dizzy, feel anxious or hallucinate. This is known as an aura. Some people smack their lips, grimace, stammer, walk around aimlessly or fiddle with things. Partial seizures can be accompanied by twitching and/or convulsions. Sometimes partial seizures affect your level of consciousness or sense of awareness. But that is not always the case.
Partial seizures may spread across the whole brain, resulting in what is known as a generalized seizure.
People with epilepsy usually don't have any physical symptoms in between seizures.
Causes and risk factors
The brain is made up of billions of nerve cells (neurons). Different areas of the brain are responsible for different things, including movement, speech, perception and feelings. The nerve cells communicate with each other using electrical and chemical signals. During an epileptic seizure, the interactions between nerve cells temporarily go haywire.
As a result, certain areas of the brain or all areas of the brain become overly active and fire off too many signals. The resulting "storm in the brain" has noticeable effects, such as convulsions, in the rest of the body. Epilepsy can be caused by a wide variety of things, including injuries, inflammations of the meninges or brain, strokes or tumors. If there is a known cause for someone's epilepsy, it is referred to as "symptomatic epilepsy." But it is often not possible to find a clear cause.
Sometimes several people in different generations of a family have epilepsy. This is a sign that it may be genetically inherited.
Things like strobe lights in night clubs can trigger epileptic seizures in some people. And sometimes people who don’t have epilepsy might have a seizure in certain circumstances, for instance due to a lack of sleep, a lack of oxygen, poisoning, alcohol or – particularly in children – a high temperature.
It is estimated that about 10 out of 100 people have at least one seizure at some point in their life, although most of these are one-off seizures that are not epilepsy. Doctors only consider it to be epilepsy if someone has had a number of seizures for no apparent reason. That happens in just under 1 out of 100 people.
Epilepsy can arise at any age. It often starts in childhood. Middle-aged people between 40 and 59 years of age are less likely to develop epilepsy. But it becomes more likely to arise after the age of 60.
Many people only ever have one seizure, or only have epilepsy for a few months or years. Others have it for the rest of their life. About half of all people have a second seizure following the first one. People who have had two seizures are more likely to have further seizures: about 7 out of 10 have another epileptic seizure within a few years.
But these are only average figures. An individual’s risk of having another seizure will greatly depend on the cause of their seizure(s) so far. For instance, people who have had seizures caused by something like a brain disease are twice as likely to have further seizures compared to people with an unknown cause of seizures or a genetic risk.
Some people who have epilepsy take medication and do not have seizures for many years – even after they stop taking the medication. Others only remain seizure-free when they are on medication. About 3 out of 10 people with epilepsy still have regular seizures despite having various kinds of treatment.
It can take a while to recover from more severe epileptic seizures. Some people are exhausted for a few hours afterwards, and sleep a lot. They may also feel down for a bit or have temporary problems with forgetfulness, speech, or paralysis. Other people feel normal again after a few minutes and can return to work or school.
Epileptic seizures may lead to injury. This is particularly likely if people have generalized seizures where their whole body convulses (shakes uncontrollably). They may then accidentally hurt themselves or bite their tongue. Certain types of epilepsy are associated with a greater risk of accidents and falls too.
The fear of having a seizure can be mentally distressing, especially in people who frequently have seizures. Epilepsy can also increase the likelihood of developing depression.
Epileptic seizures don’t cause lasting damage to the brain. Although a lot of mentally disabled people have epilepsy too, that is because the cause of their disability – brain damage or a brain disease – also makes epilepsy more likely. Having frequent and severe seizures over many years can make you more forgetful and less able to concentrate, though.
Whether or not epilepsy affects your life expectancy will greatly depend on what is causing it. Only very few people die as a result of epilepsy. People whose epilepsy is caused by another medical condition generally live shorter lives, but that is often due to the underlying condition, not the epilepsy. People whose epilepsy is caused by genetic factors have a similar life expectancy to people without epilepsy.
Epilepsy can itself lead to death in the following situations:
- If someone has a seizure that results in a fatal accident.
- If a severe, long-lasting seizure (status epilepticus) prevents the brain from getting enough oxygen, and that leads to heart and lung failure.
- If people with epilepsy die suddenly and unexpectedly. This is known as “sudden unexpected death in epilepsy” (SUDEP). It is extremely rare, though.
Having one seizure doesn’t necessarily mean you have epilepsy. Some people only have one seizure or a few seizures in their lifetime. This kind of seizure can be triggered by certain circumstances, such as a high temperature (often in childhood), poisoning, low blood sugar or alcohol consumption.
Someone is considered to have epilepsy if the seizures keep recurring. Epilepsy is usually diagnosed if
- they have had at least two seizures,
- there was a period of at least 24 hours between the seizures, and
- there is nothing to suggest that the seizures were one-off events.
Your medical history is important for making the diagnosis. For instance, when and under what circumstances did the seizure occur? What happened during the seizure? People who have seizures often can’t remember what happened themselves. It can then be a good idea to go to your doctor’s appointment with a friend or relative who was there with you during a seizure. They will be able to give a more accurate account of what happened.
As well as being given a physical and neurological examination, a blood sample is taken. Sometimes a sample of cerebrospinal fluid is taken from the lumbar (lower back) region of the spine too, using a needle. This procedure is known as a lumbar puncture or spinal tap.
An electroencephalogram (EEG) is a painless test that measures electrical activity in your brain. Certain EEG patterns indicate that you are more likely to have seizures. But an EEG alone isn’t enough to diagnose epilepsy.
An MRI (magnetic resonance imaging) scan is usually done too. This helps to find out whether there are changes in the brain that could be causing the seizures.
The most suitable kind of treatment for a specific person will depend on the type of epilepsy they have and the course of their disease so far. Epilepsy is usually treated with medication known as anti-epileptic drugs (AEDs). These include various medications from different groups of drugs. If a certain medication doesn’t work when a low dose is used, the dose can be increased. If it still doesn’t work, a medication from a different group of drugs can be tried out or several medications can be used together.
Seizures are often one-off events so no treatment is needed at first. People usually only start treatment if they have a second seizure. But certain people, for instance those with a brain disease, are more likely to have further seizures. In those cases it might be a good idea to start treatment after the first seizure. This will greatly depend on the person’s individual situation. It is important to discuss all the options with your doctor.
People who decide to take medication usually take it for many years. Some people can try to stop taking medication after a while if they have not had any seizures for several years. Others have to take medication for the rest of their lives.
If seizures can’t be prevented with medication, a surgical procedure may be considered. The options include:
- Brain surgery: If someone has partial seizures and it is clear which part of the brain is triggering them, that part of the brain can be surgically removed. But this is not always possible.
- Vagus nerve stimulation: In this procedure, a pacemaker-like device is implanted under the skin of your chest, where it produces electrical signals. It is connected to the vagus nerve in your neck and is meant to prevent the nerve cells from being too active.
The treatment is overseen by a neurologist. Children and teenagers with epilepsy will see a pediatric neurologist. Some of the diagnostic tests and treatments are often carried out in a hospital. There are outpatient facilities and clinics that specialize in treatments for people with epilepsy (e.g. epilepsy centers, specialized hospital departments or doctors’ practices). These are particularly suitable if you have a specific problem, if the diagnosis is not clear, or if you keep on having seizures despite treatment.
When people with epilepsy have seizures they do not usually need treatment. The most important thing that helpers can do is stay calm and prevent injury. If the seizure lasts longer than five minutes or if several seizures occur within a short space of time, the emergency services should be informed (e.g. by calling 112 in Germany and most European countries, or 911 in the U.S.). Severe epileptic seizures may require a hospital stay.
People who are diagnosed with epilepsy will no doubt have many questions. The answers will greatly depend on your personal situation. The following list of questions might help you to prepare for your doctor’s appointment:
- What exactly is the diagnosis?
- What are the medication options? What are their advantages and disadvantages?
- What are the other treatment options? What are their advantages and disadvantages?
- What can trigger seizures and how can I lower the risk of having seizures? Would changing my lifestyle help?
- What precautionary measures can I take to increase my safety during seizures?
- How will my epilepsy affect my work and everyday activities like driving a car?
- Will my epilepsy affect my ability to have children?
- Will my epilepsy affect my insurances?
- Where can I find further help and support?
Teenage girls and women with epilepsy might need professional advice concerning specific issues such as contraception, pregnancy and breastfeeding. Older people and people with a mental disability also often have particular challenges that require specialist advice.
Support is available from doctors, self-help groups and information centers.
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