The epilepsies are a spectrum of brain disorders ranging from severe, life-threatening and disabling, to ones that are much more benign. In epilepsy, the normal pattern of neuronal activity becomes disturbed, causing strange sensations, emotions, and behaviour or sometimes convulsions, muscle spasms, and loss of consciousness. The epilepsies have many possible causes and there are several types of seizures. Anything that disturbs the normal pattern of neuron activity—from illness to brain damage to abnormal brain development—can lead to seizures. Epilepsy may develop because of an abnormality in brain wiring, an imbalance of nerve signalling chemicals called neurotransmitters, changes in important features of brain cells called channels, or some combination of these and other factors. Having a single seizure as the result of a high fever (called febrile seizure) or head injury does not necessarily mean that a person has epilepsy. Only when a person has had two or more seizures is he or she considered to have epilepsy. A measurement of electrical activity in the brain and brain scans such as magnetic resonance imaging or computed tomography are common diagnostic tests for epilepsy.
Epilepsy is the fourth most common neurological disorder and affects people of all ages.
Epilepsy means the same thing as "seizure disorders."
Epilepsy is characterized by unpredictable seizures and can cause other health problems.
Epilepsy is a spectrum condition with a wide range of seizure types and control varying from person-to-person.
Public misunderstandings of epilepsy cause challenges that are often worse than the seizures.
While epilepsy cannot be cured, for some people the seizures can be controlled with medication, diet, devices, and/or surgery. Most seizures do not cause brain damage, but ongoing uncontrolled seizures may cause brain damage. It is not uncommon for people with epilepsy, especially children, to develop behavioural and emotional problems in conjunction with seizures. Issues may also arise as a result of the stigma attached to having epilepsy, which can led to embarrassment and frustration or bullying, teasing, or avoidance in school and other social settings. For many people with epilepsy, the risk of seizures restricts their independence (some states refuse drivers licenses to people with epilepsy) and recreational activities.
Epilepsy can be a life-threatening condition. Some people with epilepsy are at special risk for abnormally prolonged seizures or sudden unexplained death in epilepsy.
Can the epilepsies be prevented?
At this time, there are no medications or other therapies that have been shown to prevent epilepsy. In some cases, the risk factors that lead to epilepsy can be modified. Good prenatal care, including treatment of high blood pressure and infections during pregnancy, may prevent brain injury in the developing foetus that may lead to epilepsy and other neurological problems later. Treating cardiovascular disease, high blood pressure, and other disorders that can affect the brain during adulthood and aging also may prevent some cases of epilepsy. Prevention or early treatment of infections such as meningitis in high-risk populations may also prevent cases of epilepsy. Also, the wearing of seatbelts and bicycle helmets, and correctly securing children in car seats, may avert some cases of epilepsy associated with head trauma.
How can epilepsy be treated?
Accurate diagnosis of the type of epilepsy a person has is crucial for finding an effective treatment. There are many different ways to successfully control seizures. Doctors who treat the epilepsies come from many different fields of medicine and include neurologists, paediatricians, paediatric neurologists, internists, and family physicians, as well as neurosurgeons. An epileptologist is someone who has completed advanced training and specializes in treating the epilepsies.
Once epilepsy is diagnosed, it is important to begin treatment as soon as possible. Research suggests that medication and other treatments may be less successful once seizures and their consequences become established. There are several treatment approaches that can be used depending on the individual and the type of epilepsy. If seizures are not controlled quickly, referral to an epileptologist at a specialized epilepsy centre should be considered, so that careful consideration of treatment options, including dietary approaches, medication, devices, and surgery, can be performed in order to gain optimal seizure treatment.
The most common approach to treating the epilepsies is to prescribe antiseizure drugs. More than 20 different antiseizure medications are available today, all with different benefits and side effects. Most seizures can be controlled with one drug (called monotherapy). Deciding on which drug to prescribe, and at what dosage, depends on many different factors, including seizure type, lifestyle and age, seizure frequency, drug side effects, medicines for other conditions, and, for a woman, whether she is pregnant or will become pregnant. It may take several months to determine the best drug and dosage. If one treatment is unsuccessful, another may work better.
For many people with epilepsy, seizures can be controlled with monotherapy at the optimal dosage. Combining medications may amplify side effects such as fatigue and dizziness, so doctors usually prescribe just one drug whenever possible. Combinations of drugs, however, are still sometimes necessary for some forms of epilepsy that do not respond to monotherapy.
When starting any new antiseizure medication, a low dosage will usually be prescribed initially followed by incrementally higher dosages, sometimes with blood-level monitoring, to determine when the optimal dosage has been reached. It may take time for the dosage to achieve optimal seizure control while minimizing side effects. The latter are usually worse when first starting a new medicine.
Most side effects of antiseizure drugs are relatively minor, such as fatigue, dizziness, or weight gain. Antiseizure medications have differing effects on mood: some may worsen depression, where others may improve depression or stabilize mood. However, severe and life-threatening reactions such as allergic reactions or damage to the liver or bone marrow can occur. Antiseizure medications can interact with many other drugs in potentially harmful ways. Some antiseizure drugs can cause the liver to speed the metabolism of other drugs and make the other drugs less effective, as may be the case with oral contraceptives. Since people can become more sensitive to medications as they age, blood levels of medication may need to be checked occasionally to see if dosage adjustments are necessary. The effectiveness of a medication can diminish over time, which can increase the risk of seizures. Some citrus fruit and products, in particular grapefruit juice, may interfere with the breakdown of many drugs, including antiseizure medications – causing them to build up in the body, which can worsen side effects.
Some people with epilepsy may be advised to discontinue their antiseizure drugs after 2-3 years have passed without a seizure. Others may be advised to wait for 4 to 5 years. Discontinuing medication should always be done with supervision of a health care professional. It is very important to continue taking antiseizure medication for as long as it is prescribed. Discontinuing medication too early is one of the major reasons people who have been seizure-free start having new seizures and can lead to status epilepticus. Some evidence also suggests that uncontrolled seizures may trigger changes in the brain that will make it more difficult to treat the seizures in the future.
The chance that a person will eventually be able to discontinue medication varies depending on the person's age and his or her type of epilepsy. More than half of children who go into remission with medication can eventually stop their medication without having new seizures. One study showed that 68 percent of adults who had been seizure-free for 2 years before stopping medication were able to do so without having more seizures and 75 percent could successfully discontinue medication if they had been seizure-free for 3 years. However, the odds of successfully stopping medication are not as good for people with a family history of epilepsy, those who need multiple medications, those with focal seizures, and those who continue to have abnormal EEG results while on medication.
There are specific syndromes in which certain antiseizure medications should not be used because they may make the seizures worse. For example, carbamazepine can worsen epilepsy in children diagnosed with Dravet syndrome.
Dietary approaches and other treatments may be more appropriate depending on the age of the individual and the type of epilepsy. A high-fat, very low carbohydrate ketogenic diet is often used to treat medication-resistant epilepsies. The diet induces a state known as ketosis, which means that the body shifts to breaking down fats instead of carbohydrates to survive. A ketogenic diet effectively reduces seizures for some people, especially children with certain forms of epilepsy. Studies have shown that more than 50 percent of people who try the ketogenic diet have a greater than 50 percent improvement in seizure control and 10 percent experience seizure freedom. Some children are able to discontinue the ketogenic diet after several years and remain seizure-free, but this is done with strict supervision and monitoring by a physician.
The ketogenic diet is not easy to maintain, as it requires strict adherence to a limited range of foods. Possible side effects include impaired growth due to nutritional deficiency and a build-up of uric acid in the blood, which can lead to kidney stones.
Researchers are looking at modified versions of and alternatives to the ketogenic diet. For example, studies show promising results for a modified Atkins diet and for a low-glycemic-index treatment, both of which are less restrictive and easier to follow than the ketogenic diet, but well-controlled randomized controlled trials have yet to assess these approaches.
Evaluation of persons for surgery is generally recommended only after focal seizures persist despite the person having tried at least two appropriately chosen and well-tolerated medications, or if there is an identifiable brain lesion (a dysfunctional part of the brain) believed to cause the seizures. When someone is considered to be a good candidate for surgery experts generally agree that it should be performed as early as possible.
Surgical evaluation takes into account the seizure type, the brain region involved, and the importance of the area of the brain where seizures originate (called the focus) for everyday behaviour. Prior to surgery, individuals with epilepsy are monitored intensively in order to pinpoint the exact location in the brain where seizures begin. Implanted electrodes may be used to record activity from the surface of the brain, which yields more detailed information than an external scalp EEG. Surgeons usually avoid operating in areas of the brain that are necessary for speech, movement, sensation, memory and thinking, or other important abilities. fMRI can be used to locate such “eloquent” brain areas involved in an individual.
While surgery can significantly reduce or even halt seizures for many people, any kind of surgery involves some level of risk. Surgery for epilepsy does not always successfully reduce seizures and it can result in cognitive or personality changes as well as physical disability, even in people who are excellent candidates for it. Nonetheless, when medications fail, several studies have shown that surgery is much more likely to make someone seizure-free compared to attempts to use other medications. Anyone thinking about surgery for epilepsy should be assessed at an epilepsy centre experienced in surgical techniques and should discuss with the epilepsy specialists the balance between the risks of surgery and desire to become seizure-free.
Even when surgery completely ends a person's seizures, it is important to continue taking antiseizure medication for some time. Doctors generally recommend continuing medication for at least two years after a successful operation to avoid recurrence of seizures.
Surgical procedures for treating epilepsy disorders include:
Surgery to remove a seizure focus involves removing the defined area of the brain where seizures originate. It is the most common type of surgery for epilepsy, which doctors may refer to as a lobectomy or lesionectomy, and is appropriate only for focal seizures that originate in just one area of the brain. In general, people have a better chance of becoming seizure-free after surgery if they have a small, well-defined seizure focus. The most common type of lobectomy is a temporal lobe resection, which is performed for people with medial temporal lobe epilepsy. In such individuals one hippocampus (there are two, one on each side of the brain) is seen to be shrunken and scarred on an MRI scan.
Multiple subpial transection may be performed when seizures originate in part of the brain that cannot be removed. It involves making a series of cuts that are designed to prevent seizures from spreading into other parts of the brain while leaving the person's normal abilities intact.
Corpus callosotomy,or severing the network of neural connections between the right and left halves (hemispheres) of the brain, is done primarily in children with severe seizures that start in one half of the brain and spread to the other side. Corpus callosotomy can end drop attacks and other generalized seizures. However, the procedure does not stop seizures in the side of the brain where they originate, and these focal seizures may even worsen after surgery.
Hemispherectomy and hemispherotomy involve removing half of the brain's cortex, or outer layer. These procedures are used predominantly in children who have seizures that do not respond to medication because of damage that involves only half the brain, as occurs with conditions such as Rasmussen's encephalitis. While this type of surgery is very excessive and is performed only when other therapies have failed, with intense rehabilitation, children can recover many abilities.
Electrical stimulation of the brain remains a therapeutic strategy of interest for people with medication-resistant forms of epilepsy who are not candidates for surgery.
The vagus nerve stimulation device for the treatment of epilepsy was approved by the U.S. Food and Drug Administration (FDA) in 1997. The vagus nerve stimulator is surgically implanted under the skin of the chest and is attached to the vagus nerve in the lower neck. The device delivers short bursts of electrical energy to the brain via the vagus nerve. On average, this stimulation reduces seizures by about 20 - 40 percent. Individuals usually cannot stop taking epilepsy medication because of the stimulator, but they often experience fewer seizures and they may be able to reduce the dosage of their medication.
Responsive stimulation involves the use of an implanted device that analyses brain activity patterns to detect a forthcoming seizure. Once detected, the device administers an intervention, such as electrical stimulation or a fast-acting drug to prevent the seizure from occurring. These devices also are known as closed-loop systems. NeuroPace, one of the first responsive stimulation, closed-loop devices, received premarket approval by the FDA in late 2013 and is available for adults with refractory epilepsy (hard to treat epilepsy that does not respond well to trials of at least two medicines).
Experimental devices: not approved by the FDA for use in the United States
Deep brain stimulation using mild electrical impulses has been tried as a treatment for epilepsy in several different brain regions. It involves surgically implanting an electrode connected to an implanted pulse generator – similar to a heart pacemaker – to deliver electrical stimulation to specific areas in the brain to regulate electrical signals in neural circuits. Stimulation of an area called the anterior thalamic nucleus has been particularly helpful in providing at least partial relief from seizures in people who had medication-resistant forms of the disorder.
A report on trigeminal nerve stimulation (using electrical signals to stimulate parts of the trigeminal nerve and affected brain regions) showed efficacy rates similar to those for vagal nerve stimulation, with responder rates hovering around 50 percent. (A responder is defined as someone having greater than a 50 percent reduction in seizure frequency.) Freedom from seizures, although reported, remains rare for both methods.
Transcutaneous magnetic stimulation involves a device being placed outside the head to produce a magnetic field to induce an electrical current in nearby areas of the brain. It has been shown to reduce cortical activity associated with specific epilepsy syndromes.
Once epilepsy is diagnosed, it is important to begin treatment as soon as possible. For about 70 percent of those diagnosed with epilepsy, seizures can be controlled with modern medicines and surgical techniques. Some drugs are more effective for specific types of seizures. An individual with seizures, particularly those that are not easily controlled, may want to see a neurologist specifically trained to treat epilepsy. In some children, special diets may help to control seizures when medications are either not effective or cause serious side effects.
What to do if you see someone having a seizure
Roll the person on his or her side to prevent choking on any fluids or vomit.
Cushion the person’s head.
Loosen any tight clothing around the neck.
Don’t restrict the person from moving or wandering unless he or she is in danger.
Do NOT put anything into the person’s mouth, not even medicine or liquid. These can cause choking or damage to the person’s jaw, tongue, or teeth. Remember, people cannot swallow their tongues during a seizure or any other time.
Remove any dangerous objects the person might hit or walk into during the seizure.
Note how long the seizure lasts and what symptoms occurred so you can tell a doctor or emergency personnel if necessary.
Stay with the person until the seizure ends.
Call emergency service if:
The person is pregnant or has diabetes.
The seizure happened in water.
The seizure lasts longer than 5 minutes.
The person does not begin breathing normally or does not regain consciousness after the seizure stops.
Another seizure starts before the person regains consciousness.
The person injures himself or herself during the seizure.
This is a first seizure or you think it might be. If in doubt, check to see if the person has a medical identification card or jewellery stating that they have epilepsy or a seizure disorder.
After the seizure ends, the person will probably be groggy and tired. He or she also may have a headache and be confused or embarrassed. Try to help the person find a place to rest. If necessary, offer to call a taxi, a friend or a relative to help the person get home safely.
Don't try to stop the person from wandering unless he or she is in danger.
Don't shake the person or shout.
Stay with the person until he or she is completely alert.
MYTH 1: You convulse (shake and jerk) when you have epilepsy
FACT 1: Not every seizure means a person jerks convulsively, nor is a person always unconscious during a seizure. Convulsions while unconscious are usually associated with tonic clonic seizures. There is a range of seizures, which have different side effects and can affect people differently. In fact, there are more than 40 different types of seizures, and a convulsion is not the most common kind. Seizures can take many forms including a blank stare, involuntary movement, altered consciousness, a change in sensation or a convulsion.
MYTH 2: Flashing lights cause seizures in everyone with epilepsy
FACT 2: Around 1 in 100 people has epilepsy, and of these people, around 3% have photosensitive epilepsy. Photosensitive epilepsy is more common in children and young people (up to 5%) and is less commonly diagnosed after the age of 20. Triggers differ from person to person, but common triggers include a lack of sleep, stress, and alcohol.
MYTH 3: With today’s medication, epilepsy is largely a solved problem.
Epilepsy is a chronic medical problem that for many people can be successfully treated with medication. Unfortunately, treatment doesn’t work for everyone, and there is a critical need for more research.
MYTH 4: Epilepsy is rare
FACT 4: Epilepsy is anything but rare. over 500,000 people in the UK have epilepsy. That’s about one in every 100 people. There are more than twice as many people with epilepsy in the U.S. as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. There are also around 60 million people with epilepsy in the world. Anyone can develop epilepsy, it happens in all ages, races and social classes. Epilepsy can occur as a single condition or may accompany other conditions affecting the brain, such as cerebral palsy, mental retardation, autism, Alzheimer’s, and traumatic brain injury.
MYTH 5: The only side effects of a seizure are tiredness and being confused
FACT 5: Having epilepsy can affect people in different ways. Knowing that a person ‘has epilepsy’ does not tell you very much about what happens for them or how epilepsy affects them. For example, some people may have problems with sleep or memory and for some people epilepsy may affect their mental health.
MYTH 6: You can swallow your tongue during a seizure.
FACT 6: It is physically impossible to swallow your tongue.
MYTH 7: You should force something into the mouth of someone having a seizure.
FACT 7: Never put something in the mouth of someone having a seizure! That’s a good way to chip teeth, puncture gums, be bit or even break someone’s jaw. The correct first aid is simple. Gently roll the person on one side and put something soft under his or head for protection from injury.
MYTH 8: You should restrain someone having a seizure.
FACT 8: Never use restraint! The seizure will run its course, and you cannot stop it. Simple first aid to prevent injury is best.
MYTH 9: Epilepsy is contagious.
FACT 9: You can’t catch epilepsy from another person. Period.
MYTH 10: Only kids get epilepsy.
FACT 10: Epilepsy happens to people over age 65 almost as often as it does to children age 10 and under. Seizures in the elderly are often the after effect of other health problems like stroke and heart disease.
MYTH 11: People with epilepsy are disabled and can’t work.
FACT 11: People with epilepsy have the same range of abilities and intelligence as the rest of us. Some have severe seizures and cannot work; others are successful and productive in challenging careers.
MYTH 12: People with epilepsy shouldn’t be in jobs of responsibility and stress.
FACT 12: People with seizure disorders are found in all walks of life and at all levels in business, government, the arts and other professions. We aren’t always aware of them because many people, even today, do not talk about having epilepsy for fear of what others might think.
MYTH 13: You can’t die from epilepsy.
FACT 13: Epilepsy is still a very serious condition and individuals do die from seizures. Experts estimate that prolonged seizures (status epilepticus) are the cause of 22,000 to 42,000 deaths in the U.S. each year. In a major study of status epilepticus, 42% of deaths occurred in individuals with a history of epilepsy.
MYTH 14: You can’t tell what a person might do during a seizure.
FACT 14: Seizures commonly take a characteristic form and the individual will do much the same thing during each episode. Behaviour may be inappropriate for the time and place, but it is unlikely to cause harm to anyone.
MYTH 15: Epilepsy is a form of spiritual possession.
FACT 15: Although most people have long recognized that epilepsy is not a form of possession, some cultures still believe this. Epilepsy organizations are working hard to educate all people that epilepsy is a medical condition, a disorder of the brain that causes sufferers to have recurrent seizures.
Myth 16: You are born with epilepsy. The cause is genetic.
FACT 16: Anyone can develop epilepsy at any time. Some people are born with it, whereas others have their very first seizure in middle age. While genetics can play a factor, there are other more common causes of epilepsy, such as head trauma, brain tumour or lesion and stroke. In most cases about 65 to 70 percent, the cause of epilepsy is not known.
Myth 17: Epilepsy affects intelligence.
FACT 17: People with epilepsy on average have the same level of intelligence as those without epilepsy. Learning can be made more difficult if seizures are frequent, or if medication has very pronounced side effects, such as causing drowsiness and excessive fatigue. However, epilepsy typically does not cause lower intelligence. In fact, some very talented and brilliant people have epilepsy, including some pretty influential historical figures such as Sir Isaac Newton, Vincent Van Gogh, Ludwig van Beethoven, Agatha Christie and Napoleon.
Myth 18: Epilepsy is severe and people often have frequent seizures.
FACT 18: Some people do have frequent seizures, perhaps daily, while others are more controlled, only experiencing them once a year. Some people have excellent seizure management and haven’t had one for a decade or more. Medication for epilepsy offers good control to the large majority. There are some, however, who are not helped by treatment and have intractable epilepsy. Epilepsy affects everyone differently.
Myth 19: Seizures are always medical emergencies and you should call 911.
FACT 19: Actually, seizures are most often not medical emergencies and an ambulance is not always required. You should call 911, however, if: a seizure lasts five minutes or longer or repeats one after another without the person regaining consciousness in-between; it is someone’s first seizure; the person is injured during the seizure (through a fall, for example); the seizure happens in water; or the person is pregnant or has diabetes.