This paper reflects the research and thoughts of a student at the time the paper was written for a course at Bryn Mawr College. Like other materials on Serendip, it is not intended to be "authoritative" but rather to help others further develop their own explorations. Web links were active as of the time the paper was posted but are not updated.
2003 Second Web Paper
"Epilepsy is a brain disorder involving recurrent seizures. You can relax. It's not the end of the world." This was my neurologist's introduction to my diagnosis as an epileptic with partial petit mal seizures including a curious, not to mention exciting, history of 2 grand mal seizures. As a 12-year-old girl, I remember feeling confused and greatly changed by these words that I had yet to understand the meaning of. As I grew to learn more about my condition, I realized that there are people around the globe, ranging in age, race, social and economic background that have experienced this same confusion. Collectively, we have gathered an incomplete, but valuable and working concept of epilepsy. Although it is one of the earliest recorded diseases, it attracts the attention of doctors, scientists, and researches everywhere, still in search of a clear understanding of the causes of particular seizures. Different nations contribute to our ever-expanding understanding of its history, epidemiology, prognosis and mortality, along with clinical manifestations and differential diagnosis. Tracing modern diagnosis and therapies back to biblical times allows us to compare another very important aspect of epilepsy: very similar modern and ancient perspectives on this disorder.
Our language gives clues as to the longevity of epilepsy: the term epilepsy derives from the Greek word "epilambien" which means "to take hold of" or "to seize." (1). Epilepsy is a disease with one of the longest recorded histories and an impact spanning the globe, allowing healers and physicians from a wide range of countries and time periods to study epilepsy. Worldwide studies have estimated the mean prevalence of active epilepsy, (i.e. continuing seizures or the need for treatment) at approximately 8.2 per 1000 of the general population.) (2) Further research in the world is looking to explain why in developing countries, such as Colombia, Ecuador, India Liberia, Nigeria, Panama, and the United Republic of Tanzania and Venezuela show a prevalence rate of over 10 per ever 1,000 people. Thus, it seems that at any one time, approximately 50 million people in the world suffer from epilepsy. (3) Today, most would agree that epilepsy involves a deviation from normal brain activity through instability of neurons. The neurobiology of epilepsy is hard to describe, as different types of seizures are related to different parts and separate problems within the brain. This instability causes them to fire in a rapid and/or excessive, synchronous and/or inconsistent manner, with excess electrical discharges within our brain resulting in a seizure. Because this involves very complicated brain activity, and "instabilities" of varying degrees or locations in the brain, there is a great difference between the appearance and treatment of acute presentations, and more severe or chronic presentations. The severity of these seizures depends on several factors: if the episode is fever induced (febrile,) can be located to one area of the brain (partial seizures and temporal lobe seizures,) can be traced to places throughout the entire brain (generalized seizure,) or can be categorized by the intensity and level of electrical activity in the brain (petit mal seizures and grand mal seizures.) Unfortunately, although epilepsy's history dates back before biblical times, there are still very surprising gaps left to be filled.
Diagnosis is complicated and often specific to the type of seizures a person may suffer from. For a variety of medical reasons, a great number of people may experience only one seizure in their lifetime. This, however, does not meet the criteria for an epilepsy diagnosis. Many people are misdiagnosed, as there are several episodes that a person may experience that mimic a seizure, which are not. Furthermore, many seizures go undiagnosed, (most often petit mal seizures) due to their unfocused, almost "blank-out" appearance, and extremely short duration. The diagnosis of epilepsy requires a minimum of "2 or more unprovoked" seizures in a person's lifetime. (4) Although seizures are a symptom of the disease, and not always epilepsy itself, it is important to realize that what is most often "diagnosed" is what type of seizure the patient has experienced. Partial or focal seizures, for example, are most often traced to one localized part of the brain, and may not impair consciousness at all. The spread of these seizures has the potential to create generalized seizures, (also known as generalized tonic-clonic or grand mal seizures.) These involve electrical discharges that affect the entire brain, causing a loss of consciousness along with the popularly depicted muscle spasms or stiffness. (The image of a helpless person frothing at the mouth and shaking uncontrollable is not always an accurate depiction of this type of seizure.) Status epilepticus is the most rare and severe form of epilepsy. A person will suffer from frequent seizures without recovery of consciousness between each episode, or one single extremely prolonged episode. From a prolonged period of time without breathing, the lack of oxygen then results in damaged tissue, ultimately leading to brain damage or sudden death.
Differential diagnoses are quite common. A diagnosis of epilepsy requires several seizures; of whichever type or category they fit, occurring in a predictable pattern. Seizures may also be induced by an injury or trauma to the head, high fever or heat stroke, diabetes (seizures can occur when blood sugar levels are too low,) or in the presence of a brain tumor (30 to 40 percent of patients with brain tumors also have seizures.) (5) When diagnosing a patient with epilepsy, if the root of the seizure can be attributed to any one of these alternate circumstances, the seizure is then regarded more as a symptom of that condition, rather than epilepsy. <
The unique history of our methods of diagnosis for epilepsy shed light on our ever-evolving understanding and improved treatment. During the Roman era, epilepsy was diagnosed by providing a piece of jet for the patient, waiting to see if they would collapse, most likely encouraging the nickname, "The Falling Sickness." Ancient Greek doctors practiced burning the horn of a Goat, (an animal considered to be prone to epileptic seizures) underneath the patients nose. (6) Today, we have moved away from the "smell test" methods, and moved toward studying the body and the brain. A thorough physical examination is preformed, often followed by a myriad of neurological exams. Blood and Urine are also studied in an attempt to identify and kidney or liver problems that may lead to a differential diagnosis, or give clues as to what anti epileptic drugs may be harmful and non-compatible with the patient. The fluctuation of electrical impulses is then measured by an electroencephalograph (EEG), which transmits signals to nerve cells with the use of electrodes. The EEG equipment is designed to receive and intensify the fluctuations of voltage, and then transfer the information to a computer. This has become an invaluable tool for understanding the particular root or type of seizure disorder a person has. However, this is not to say that although this would be the exception, a person may still have a normal EEG reading and have epilepsy. Magnet-response-imaging (MRI) is another technique used to diagnose epilepsy, as well as computerized axial tomography (CAT Scan) more commonly used to locate or rule out brain lesions as the cause of seizures.
Treatment is available and there are several options. Which treatment an epileptic will receive is almost always contingent on the severity of their presentation, what part of the world they are being treated in, and what each individual suffering from this disease personally feels most comfortable with. Before the emergence of anti-epileptic drugs, ketogenic dieting techniques were a popular method of treatment. Although the diet closely resembles starvation in an attempt to change the body's metabolic state, it is capable of improving select types of seizure control. (7) However, today up to 70% of adults and children diagnosed with epilepsy, in both developed and still developing countries, show that their condition can be successfully treated with the use of anti-epileptic drugs. (8) Some of these drugs include Phenobarbital, Acetazolamide, Carbamazepine, Clonazepam, Levetiracetam, Phenytoin, Topiramate and many others. The UK, Scotland, Germany, China, along with many other countries, as is common with regards to the treatment of most diseases, prefer different drugs. If you lived in China, for example, it is likely that an epileptic would first consider herbal remedies, which include deadlocked silkworm, gastrodia tuber, antelope horn, centipede, and dozens of other ingredients. In the United States, Diazapam, (otherwise manufactured as Valium, Stesolid and Diazemuls,) and Phenobarbital are more common drugs used to treat more serious forms of epilepsy. Although economic and geographical boundaries do not play a role in who experiences epilepsy, unfortunately, they play a huge role in whether or not they will be able to receive proper treatment. Chinese herbal supplements, drug therapy, strict and specific diet restrictions, and surgery are among many of the common options. It is important to keep in mind that the treatment should match the presentation of the disorder, whether it is acute or chronic.
Prognosis for those who can afford and obtain access to all medical options is very encouraging. Children have some of the most promising prognosis, as many children grow out of epilepsy before the need for serious treatment is necessary. Although many presentations of epilepsy are chronic, lifelong conditions, extremely effective options of treatment are available. Sadly, permanent brain damage or death can occur as a result of a serious seizure.
There are no concrete preventative measures to avoid epilepsy. However, that is not to say that prevention is not a key word to an epileptic. The goal is to avoid possible seizures, and often times, situation that promote seizures. Some factors that may increase a person's risk of seizures may include brain injury, history of seizures in the family, and other medical problems effecting electrolytes. Remaining aware of your physical condition, as with many illnesses, can help decrease your risk of having a completely unexpected incident. Exposure to certain medications and illicit drugs (such as the commonly debated, over-the-counter drug discussed in the media today, ephedrine,) has been known to intensify and cause seizures. Common to my experience as well as many other epileptics, a doctor will also recommend that their patient avoid anything and everything that may have been responsible for triggering their previous seizure. Provocative factors may include stress (emotional or physical), flashing lights (such as strobe lights, television, video games, etc,) over-hydration, fatigue, and any combination.
Unfortunately, epilepsy is also associated with an increased rate of mortality. This may be for a myriad of reasons, spanning from those which are medical, such as an underlying brain disease, (tumor or infection,) which may be the cause of seizures in a particular patient, Status epilepticus, or for other sudden an unexplained causes that result in respiratory or cardio-respiratory arrest during a seizure. Other causes of mortality are due to drowning, burns, or head injuries as a result of location at the time of the seizure, (especially car accidents,) and suicides. (9)
Some of the earliest writings on this disease reveal that it was once known as the "Holy Sickness," studied by the Greek physician Hippocrates, whose studied epilepsy with the belief that it could be cured with the understanding of what is known today as humoral pathology (controlling body fluids or humors.) Fascinatingly, recent translations, dating from about 500 BC, of a Babylonian tablet have revealed even earlier descriptions of epilepsy. However, it was during biblical times that the most famous historical account of a seizure was given in St. Matthew's Gospel, Ch. 17, Verses 15-17 of the bible: "Lord have mercy on my son, for he is lunatick and sore vexed, for oftimes he falleth into the fire and oft into the water. And I brought him to thy disciples and they could not cure him. Then Jesus answered and said, O faithless and perverse generation how long shall I be with you? bring him hither to me. And Jesus rebuked the Devil and he departed out of him: and the child was cured from that very hour." Mark Chapter 9, Verses 17-18, confirm the initial suspicion that the latter account is one of epilepsy; "he has an evil spirit in him and can not talk. Whenever the spirit attacks him, it throws him to the ground, and he foams at the mouth, grits his teeth and becomes stiff all over." Today the boy's condition would most likely be diagnosed as a grand-mal seizure, but at the time, traditional healers would most likely surmise that there had been an act committed against God, along with the presence of demons, that caused this horrific episode.
If we could imagine that the young boy from this biblical story was able to tell of his experience with epilepsy, and his interaction with the healers of the time, he may recount an experience similar to this:
"I do not remember exactly what happened. I felt lightheaded upon awakening. My father has told me that evil spirits have possessed me, and we must go to Jesus. I am ashamed, and unable to imagine what sin God is punishing me for. My father has told me that demons can enter the body at birth. However, this has not stopped neighbors from fearing me. I am alone and in need of healing. I know that God would be displeased if I did not seek him first for a cure, and so I will go to Jesus, although there are other doctors who believe that my condition is due to an imbalance of humors. My father has told me that it is the casting out of demons that will cure me. Jesus prayed for me and cast out the devil, and I was told I was cured. I prayed the demons would not return to haunt me, in fear that I would be abandoned by all of my community."
Today, the initial reaction of epileptics, actions of healers, and understanding of epilepsy are completely different. Our methods of diagnosis are based on a completely separate belief system, and our treatment of the patient, as well as the disease, has undergone centuries of change.
The most accurate modern day account I can give is my own. Although some of the details are hazy, the experience of my first seizure was like none other. I was a very academically interested and concerned student at a very young age. However, my teachers began to notice (as is common with many children suffering from petit mal seizures,) that I would have spells that showed "a real lack of attention and frequent disorder." My mother returned from a parent-teacher conference a little short of concerned for my health: "You are going to bed earlier! That's it! And you better start looking at your teachers in class so that you remember to focus on what they are saying!" It was not until my mom found me on the bathroom floor on February 19th of 1997 that we took my lack of focusing spells seriously. I was home from school with the flu and had just recently taken my temperature, which was nearing about 101 degrees feirenheight. I was standing near the shower, and began to feel light headed so I attempted to catch my balance on the bar of the shower. I still remain unsure of whether or not I fell (which may have caused the seizure,) or had the seizure and then fell. However, I recall this distinction being very important to every doctor I was brought to see. The fall was quite bad; I hit my head on the tile of the shower, yet the doctors' questions about the fall were left unanswered. I do not recall regaining consciousness until I hit the cold air outside while I was being carried out to the ambulance on a stretcher. It was my first grand mal seizure, and it clearly warranted an ambulance.
I live on a small island, and the retelling of this story would not hold the same impact without expressing how thoroughly embarrassed I was. All the people in my tiny community were standing outside their houses. My little sister was crying and my mother was gasping, clutching her chest, and asking questions uncontrollably. Personally, the most horrific aspect of this disease is the feeling of 'I have no idea what just happened,' combined with a constant fear of: 'Next time this is going to happen in school and all the kids are going to think I need an exorcism. I will become the ultimate freak show!' I was instructed not to fall asleep in the ambulance, which I now deduce was a precaution involving the fall, attempting to avoid slipping into unconsciousness.
By the time I arrived at the hospital, I was feeling fully recovered. After the seizure, I had had very brief but shooting stomach pains, but those subsided quickly and my goal was to recover from the shock. I'll never forget one extremely kind, vivacious, and un-professional nurse remaking, "Next time, your parents can give you milk and chocolate syrup so you can mix them some chocolate milk." I appreciated her humor, and the lighthearted, stress-free atmosphere that all of the doctors and staff had worked so hard to create. The doctor in the emergency room was less playful, as he wrote down my complete medical history, including specific pieces of history from my parents and ancestors. He was specifically interested in the details of my birth, any complications or illnesses involving my nervous system, any possibly related or suspicious childhood events, any medications I was currently taking, and some brief questions regarding drug and alcohol use. Especially because this was my first seizure, it was made clear to me that a detailed description of the events leading up to the seizure was crucial in distinguishing my seizure type. Appointments were immediately made regarding an EEG, MRI, as well as a CAT scan.
As I grew older, there were obstacles that my family and I needed to take into serious consideration. We made some very controversial decisions for my circumstances, that I feel are decisions that many epileptics struggle to make. Families often need to consider whether it is appropriate or not for their child to disclose this information on certain forms. On one hand, you place yourself and others in danger if you conceal that you are epileptic and are then placed in a situation that brings on a seizure, with no one prepared to handle a situation if it arises. On the other hand, it is a very real fear of an epileptic that they will be discriminated against. The fear that when applying for summer programs, jobs, and other positions and opportunities that would attribute to their growth as a person and resume for college, that they would be discarded as a serious liability. For instance, we chose doctors in New York City, not only because they were some of the best, but also because a New York doctor is not required by law to disclose information to New Jersey (or more specifically, the New Jersey DMV.) I was adamant about not becoming "disabled" until we were clear about my condition. These are some of the more controversial aspects of epilepsy that are most difficult to address and talk about. Different doctors will advised families to take complete separate courses of action based on their specific case. But I found my interactions with doctors to be most fascinating, as they acknowledged that I might suffer from something that many people opt to hide from the world. Traumatizing than the seizure itself, the stigma of being incapable is a huge concern.
I have been "seizure free" for about 3 years now. The experience has sharpened my awareness of the importance of people who dedicate their lives to professions as nurses, doctors and specialists. It has sparked my interest in the origin of this disease, the first treatments, conceptions, and fears surrounding it, and the speed at which our understanding has evolved. I recognize that my condition is minor compared to other epileptics, and that many cases of epilepsy are life altering, creating a very painful dependency on medications, friends, and family, and in severe cases, even surgery. Epilepsy is unique in that it effects people from all over the world, represents itself in tremendously varying degrees, and can been treated very differently depending on a patients geographical location. But what I find most fascinating are the similarities in experience for the person experiencing the seizure over thousands of years. The value of evaluating a person's experience with epilepsy during biblical times, in comparison to a person's experience today, is to recognize two main things. Shame and secrecy are not exclusive to either time period's approach to handling this disease, even though epilepsy has been considered one of the most serious brain disorders in every country of the world. Secondly, we must remain committed to the search for even greater neurological understandings, and new ways for scientist, neurologists, doctors, psychiatrists, and psychologists to introduce methods of caring for this disease and its victims, while implementing what we find over a broader region of the world. I will always remember the first explanation I was given for what I was experiencing: "Epilepsy is a brain disorder involving recurrent seizures. You can relax. It's not the end of the world." It was comforting, and also extraordinarily true.
1)Epilepsy: Across Time and Place, an interesting perspective of epilepsy's groth and change over the years.
2) Epilepsy- EPIDEMIOLOGY, ETIOLOGY AND PROGNOSIS , a sort of fact sheet about a variety of complicated aspects of epilepsy.
3) Epilepsy-EPIDEMIOLOGY, ETIOLOGY AND PROGNOSIS , same fact sheet, only focusing on mortality, prognosis and interesting facts.
4) Seizures , site explaining the diagnosis and other distinctions between seizures and common occurrences mistaken for them.
5) Seizures: Common Causes , site examining seizures, outside of epilepsy, focusing on differential diagnosis and tumors.
6) German Epilepsy Museum , a fascinating site focusing on common folk lore concerning epilepsy and several descriptive stories illustrating epilepsies role in the past, and all over the country.
7) Ketogentic Diet , a description and exploration of one very common and world wild treatment for epilepsy, being used less often today with the introduction of drugs.
8) Surgical Treatments for Epilepsy , a personal questionnaire helping one who is epileptic to decide if surgery is right for them; packed with valuable and interesting information.
9) Seizure-Related Injuries in Epileptics , an editorial by Somsak Tiamkao looking at injuries related to epilepsy.
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