For many, the word 'epilepsy' calls to mind writhing, thrashing, convulsive seizures. Since ancient times, people with epilepsy have been thought of as people apart from the rest of humanity. The ancient Greeks believed that the gods were behind seizures, and referred to epilepsy as 'the sacred disease'1. However, Hippocrates argued that 'human bodies cannot be polluted by a god; the most impure by the most holy'2. Not only did Hippocates write in his treatise on epilepsy that it is a disease 'not in the least more divine than any other', but that he also felt that the causes are 'natural and identifiable'. Hippocrates wrote of epilepsy:
When it has gained strength from one's childhood, and become habitual, such a person usually suffers attacks, and is seized with them in the changes of the winds, especially in south winds, and it is difficult of removal. For the brain becomes more humid than natural... rendering discharges... more frequent... This you may ascertain in particular, from beasts of the flock which are seized with this disease... If you will cut open the head, you will find the brain humid, full of sweat, and having a bad smell. And in this way truly you may see that it is not god that injures the body, but disease. And so it is with man.
By the Middle Ages, epilepsy had developed a more ominous image. Seizures were thought to be caused by demons, and those who had seizures were thought to be less intelligent than average3. Later, the average Renaissance man not only agreed with the demon possession theory, but would gladly watch a person with epilepsy burned alive for practicing sorcery4. During the early 20th Century, epilepsy was explained away with the all-powerful phrase 'mental illness'5.
More is now understood about epilepsy and seizures in general. Despite this, most people have misconceptions about epilepsy and those who have it.
One common misconception is about just what epilepsy actually is. Epilepsy has absolutely nothing to do with the supernatural6 nor is it a psychological problem in any way7. The most mind-boggling question, though, is 'Is epilepsy ever contagious8?' It is not. According to all available literature, epilepsy is a neurological disorder in which there are occasional electric overloads in the brain. The short circuits cause the seizures.
'Just as a sneeze is a symptom of a cold,' seizures are symptoms of epilepsy9. However, just because a person has a seizure does not necessarily mean that that person has epilepsy10, just as a sneeze does not immediately signal a cold. People who have only one seizure in their life do not have epilepsy - they must have at least two. Some examples of seizures that do not signal epilepsy are first seizures, febrile seizures, eclampsia, and nonepileptic events. During a recent eight-year study, it was found that people that had one seizure had a 33% chance of having a second within four years. Those that did not remained seizure-free during the rest of the study. Those that did have a second seizure within four years, had on average a 73% chance of a third seizure by the end of another four years. Febrile seizures are generally demonstrated by infants, and are the result of high fevers (febrile being derived from the Latin for fever). Febrile seizures very rarely lead to epilepsy. Pregnant women who have unexplained seizures must be rushed immediately to hospital, as they may have eclampsia, a life threatening condition. Eclampsia can be treated in a hospital setting, and, once the pregnancy is over, additional seizures do not appear. Non-epileptic events, also known as pseudoseizures, are when, although a person appears to be having a seizure, no seizure activity is present in the brain. When psychological in origin, these seizures are referred to as psychogenic. Other disorders, such as Tourette syndrome, narcolepsy, and cardiac arrhythmia, can have symptoms that resemble seizures, and can be mistaken for epilepsy. Diagnosing epilepsy requires knowledgeable health officials conducting thorough medical assessments and careful monitoring.
But what causes epilepsy? Anything that affects neuron firing11 is the quickest answer, but in about half of the cases, the exact cause is unknown. Some possibilities include a lesion (a lesion is anything that shouldn't be there ie, a tumour or a cyst) of some sort, trauma (or injury), poisoning, and infection. Epilepsy can be a symptom of some disorders, such as cerebral palsy. Some disorders, such as celiac disease (wheat gluten intolerance), can lead to epilepsy. Some forms of epilepsy are genetic, but most are not.
Revisiting the 'seizure - epilepsy as sneeze/cold' analogy, there are just a few more types of seizures than sneezes. The most dramatic of these seizures - the one most people associate with epilepsy - is the tonic clonic (grand mal) seizure, which is most likely what gave rise to the demon possession theory, and it is not too difficult to see why12. A harsh cry is often voiced, because of air being forced suddenly from the lungs, while the person falls, unconscious, to the ground. The body stiffens and begins to jerk uncontrollably. Bladder or bowel control is sometimes lost. The tongue may be bitten, and frothy saliva may appear around the mouth. Breathing can become very shallow or even stop for a few moments, turning the skin a bluish colour from lack of oxygen. The jerking slows, and the seizure ends naturally after a minute or two. This is one example of a generalised seizure, meaning the entire brain is involved in the electrical overload. Another seizure of this type is the atonic seizure, in which someone loses muscle tone abruptly, and falls to the ground like a rag doll. Absence (petit mal) seizures are what the name sounds like - the brain just switches off for a few seconds - and are easily confused with daydreaming. Absence seizures usually go undetected, and are most often seen in children who may grow out of their seizures before they are ever taken to a neurologist and diagnosed with epilepsy.
Partial seizures, in which only part of the brain short circuits, while not necessarily dramatic, are often bizarre. One seizure that many adolescents demonstrate, the complex partial seizure (also called temporal lobe or psycho-motor seizure), is often mistaken for drunkenness or drug use. Someone having a complex partial seizure will most likely be dazed, and may be clumsy and unresponsive. They may pick at their clothing, mumble or make chewing motions. Some even get up and walk around, almost acting like they are walking in their sleep, and will have no memory of what they did or what happened. During a simple partial or Jacksonian seizure, the person does know what is happening, but still has no control over what goes on. Usually, all that is involved is the sudden trembling or jerking of a limb, but sometimes the movement starts gradually. A finger starts twitching, then another, and another, then the whole hand, and finally, the entire arm. This probably feels very strange, since, as said before, the person is aware that it is happening and cannot stop it. Another type of partial seizure affects the emotional centres only, causing inappropriate tears, laughter, or anger. It is understandable how the myth of epilepsy being a mental illness came to be, but it is just a myth.
More people in the US have epilepsy than is commonly thought. One per cent of the population of the United States, more than two million people, have epilepsy13. Every year, there are more than 100,000 new cases reported14. One reason epilepsy may be thought to be less common than it is in actuality is that, with treatment, most people with epilepsy appear to live fairly normal lives. Treatment is successful for approximately 80% of epilepsy patients, and the most common form of treatment is medication15. Just as with any medication, there are possible side effects and harmful drug interactions, so patient-doctor communication is extremely important.
Another treatment option, for people with specific types of epilepsy who are not helped by medication, is surgery. There are four different surgeries performed to reduce or eradicate seizure activity16. The first, and most common, simply removes the area of the brain that the seizures originate from, called the focus. If the focus is located in an important region of the brain, ie, the speech centre, then this surgery is not performed. Another surgery attempts to block the transmittal of erratic electrical impulses by making a series of cuts, and is called multiple subpial transection. This surgery leaves the patient's abilities intact, as it does not involve actually removing anything. A more dramatic surgery, corpus callosotomy, involves severing the connection between the hemispheres of the brain, the corpus callosum, in an attempt to prevent electrical outbursts from swamping the entire brain. However, seizures will still affect the hemisphere of origin, and may even increase. The most dramatic and drastic surgery of all, hemispherectomy, involves the removal of half of the cortex, or outer surface of the brain. This surgery is extremely rare.
A relatively new method, intensively studied and quite promising, counterintuitively involves electrical stimulation to reduce seizure activity17. A device called the NeuroCybernetic Prosthesis stimulates the vagus nerve, in the lower neck, and does not require the skull to be opened for placement. While vagus nerve stimulation does not eradicate seizures, it does reduce them by 20-40%, making lower dosages of medication possible, which in turn means less side effects. (The device itself may cause hoarseness or a slight cough when activated.)
Children may benefit from a treatment first described in 1921, before many of the medications now available were developed. Called the ketogenic diet, it is becoming more common again, as concerns about side effects of medication rise18. The treatment typically begins in the hospital, as the first step involves starvation until ketones, the by-product of fat burning, are present in the urine. This diet is enough to make a conventional nutritionist cringe - the typical fat to carbohydrate ratio is 3:1 or 4:1, and 1g of protein per kg of body weight per day is consumed. The point is to force the body to burn fats instead of carbohydrates for energy. It is not known why this diet reduces seizure activity at least 50% in the first two or three weeks for 30-50% of patients - all that is known at present is that it does. Continued for two years, the ketogenic diet often results in no further seizures, even after treatment is stopped. However, growth is generally affected, since this diet makes getting some required nutrients difficult.
Fear of the unknown can lead to very inappropriate reactions to seizures. According to Margery Ashley, director of Epilepsy Services of Northeastern Illinois19, 'Someone might call the police after witnessing another person have a complex partial seizure'20. A teenager from California says, 'I was drug-tested two times because school officials assumed my seizures were a result of alcohol or drugs'21. 'Friends and co-workers may not know what to do during an attack and may act differently around that person even after it is over,' says Pradeep Sahota, assistant professor of neurology at the University of Missouri School of Medicine22. Fortunately, not all discrimination is irreversible. In the early 1980s, Swarthmore College dismissed Kurt Eichenwald because of his epilepsy23. He was readmitted when school officials started to understand his condition, and he graduated with distinction. Kurt Eichenwald is now a staff writer for the New York Times.
Although people with epilepsy appear to lead fairly normal lives, there are some indications that epilepsy does affect quality of life, either directly or because of the stigma attached to anyone who is different24. Some of the results of misunderstanding are mentioned above, but there are others. These include depression and behavioural problems, both of which can be helped by epilepsy support groups, which aid the families of people with epilepsy as well as the people themselves. However, there are complications that are caused directly by epilepsy. One is that driving is restricted. The laws vary with location, but, in general, people with epilepsy are not allowed to drive if they have had recent seizures. The definition of recent ranges from a few months to several years. The risk of seizure-related accidents decreases as the length of time since the last seizure increases - one study states that the risk is reduced by 93% after one year. This restriction can make finding employment difficult, as transportation is an important factor in employment. Seizures can also impose some restrictions on recreation. Any activity for which momentary inattention is dangerous, such as motor racing or skydiving, should not be indulged in. Other activities are generally fine, with precautions to prevent overexertion, dehydration, and hypoglycemia (low blood sugar), which are usually better to avoid anyway. Pregnancy and childbirth do not necessarily pose great risks for women with epilepsy. Some medications may affect interest in sex, and some medications reduce the effectiveness of oral contraception. The chances of a woman with epilepsy having a normal, healthy child is over 90%, with a birth defect risk of only four to six per cent. A woman planning a pregnancy should inform her doctor as soon as possible, so that her medication can be changed or adjusted if necessary. Often, seizure activity will increase during pregnancy, which can increase the risk of miscarriage or damage to the baby, especially if the seizures are severe. However, many women with epilepsy have normal, healthy babies, even if they have seizures during pregnancy.
Epilepsy has been misunderstood for millennia. Seizures have been seen as signs of brief visitations from the gods and of demonic possession. Mental illness has been another explanation. Even though educated people know that these 'causes' are not true, the majority still have misgivings when they first come in to contact with epilepsy - even if they have known someone long before finding out that that person has recurring seizures. People with epilepsy are no different than anyone else; they just know exactly what to do if someone else has a seizure - keep anyone from trying to hold down a tongue which can't be swallowed anyway!
First Aid for Seizures
So what should be done to help a person having a seizure? First of all, like any first aid situation, the surroundings will dictate some of the action needed (ie, is the location a safe one?), and some of the actions are common sense, unless panic has struck the observers. The best way to prevent panic is, naturally, to have a simple list of instructions to follow:
Gently roll the person onto his or her side, to prevent the person from choking if he or she vomits. (Some of these instructions may not be possible if the convulsions are too strong. If excessive force is necessary, don't do it! The object is to help the person, not to dislocate joints...)
Cushion the person's head, and loosen any tight articles of clothing around the neck.
Make sure the person's airway is open. If necessary (and possible), tilt the person's head back slightly.
Do not try to hold the person down! If the person is smaller than you, you may end up hurting the one you're trying to help, and if that person is larger, you may end up injured25. Instead, move sharp or solid objects away from the area.
Do not put anything into the mouth of a person having a seizure! It is physically impossible for the tongue to be swallowed at any time. At best, the airway will be blocked, and, at worst, injury may result26.
Note how long the seizure lasts, and what exactly happens, to tell a doctor or emergency personnel, if necessary.
Stay with the person until the seizure is over.
It generally is not necessary to call an ambulance when someone has a seizure. However, if any of the following is the case, do call:
The person is pregnant or has diabetes.
The seizure lasts more than five minutes.
The seizure took place in water.
The person does not resume breathing or regain consciousness after the seizure is over.
Another seizure begins, especially if the person does not regain consciousness in between.
If you think that this may be the person's first seizure - if unsure, see if the person is wearing medical identification jewellery, or is carrying a card stating that he or she has epilepsy or seizure disorder.
The person is injured during the seizure.
A person who has a seizure will likely be groggy after regaining consciousness, and may be confused or embarrassed. He or she may need to rest, and may need help finding somewhere to do so. If needed, offer to arrange a way home for the person, and be patient with him or her.
For more information and/or support, see the following sites:
- American Epilepsy Society
- British Epilepsy Association
- Epilepsy Foundation
- Epilepsy Foundation of America
- MGH-Guide to Organizations Providing Epilepsy Support
- National Institute of Neurological Disorders and Stroke