Both my Uncle Tom and Aunt Rose had epilepsy, diagnosed at an early age and managed by medication throughout their lives. They were able to pursue, as the phrase goes, normal functional lives, helping and supporting their families and maintaining full-time jobs. Looking back, I can remember my parents speaking in hushed voices about their seizures, but I never actually witnessed either of them have a convulsion. Epilepsy causes normal brain activity to become disrupted, creating unusual sensations, emotions, behavior, muscle spasms, loss of consciousness, or convulsions. It appears as a disturbance in the weather of the brain, a flash of lightning or a rolling fog. Doctors would probably describe both cases in my family as less severe, in that neither my aunt nor my uncle was a candidate for surgery, and they were able to control their condition with a combination of lifestyle modification, such as never driving a car, and medicine.
In fact, most people with epilepsy can become seizure-free, according to the Mayo Clinic, by taking a single anti-seizure medication, while half of those newly diagnosed will become seizure-free with their very first medication. This is an extremely hopeful message for the 150,000 people newly diagnosed each year. “I am 29 years old and had my first grand mal seizure in May of this year, before my seizure I had "spells" where I would feel odd get very warm and nauseated, and they would go away,” writes JennayB in a community forum. “Sometime I will get an odd smell or taste in my mouth. I had these spells before I had a seizure.”
Most people are first diagnosed in early childhood or after the age of 60, but it's important to remember epilepsy may begin at any age.
“My sister and I were in Chapters [bookstore] buying some books,” writes kpurdon in a forum for epilepsy patients. “For the mere second that my sister was grabbing a book I looked up at a light and started to see black dots. I shook my head and rubbed my eyes. ... The black dots I saw from looking at the light weren't going away, they were actually getting bigger to the point that all I saw was black. I told my sister to slow down and that something wasn't right and at age 12 she thought I was playing around. …This next part I had to be told because I had blacked out and had no recollection of what had happened for the next 10-15 minutes. My sister ... noticed that I was beginning to fall as I had hit my head off one of the books. She eased me to the ground and started yelling for help. It just so happened that there were 4 off duty nurses there at the time who came to assist us.”
Types of Seizures
Like all medical conditions, epilepsy is as individual as the people who experience it, a list that would include Danny Glover (actor), Neil Young (musician), Prince (musician), Tiki Barber (athlete), and John Roberts (Chief Justice of the Supreme Court). “I had had some weird feelings in my head from time to time,” writes Just Joe. “I had been written up many times for day dreaming and yet my test and quiz scores were among the highest in the class. I had some funny feelings in my right hand. There were times my right hand would start moving without me wanting it to move. The day dreaming was basically absence seizures. The weird things happening with my right hand were what today would be [called] complex partial focal seizures. Other feelings in my head were auras.”
Although seizures may be broken down into many different groups, among the main types are tonic clonic seizures or convulsions. In the past these were referred to as grand mal seizures and they are pretty much what people imagine when they hear the word epilepsy. Often a person will cry out before they slump or fall to the ground, unconscious. The body stiffens briefly and then begins to jerk. A frothy saliva may appear around the mouth. Breathing may be very shallow and even stop for a few moments. Sometimes the skin turns bluish.
Partial seizures happen when a smaller area of the brain is affected. Simple partial seizures include symptoms such as Jamais vu (when familiar things suddenly seem unfamiliar); Déjà vu (when unfamiliar things seem familiar); trembling that moves up one side of the body; out of body experiences; sudden shifts in mood; unexplained anger or fear; and disturbed speech. Complex partial seizures produce a kind of confused, dreamlike state while they're happening and people can't remember them afterwards. They may cause a person to stare, make chewing movements with the mouth, pick at clothing, mumble, do the same actions over and over again, wander, repeat phrases, and fail to respond to other people.
A solitary seizure doesn't mean you have epilepsy — about one in every 100 people will have an unprovoked seizure once in a lifetime. At least two unprovoked seizures are required for an epilepsy diagnosis. “I had 15-20 different EEGs when I was a kid,” noted Just_Joe, “and only 1 showed seizure activity.” One in 26 people in the U.S. will develop epilepsy, while over two million currently have epilepsy. Head injuries are responsible for some cases of epilepsy, stroke, dementia, and brain infections, such as meningitis, may trigger the condition as well. Following migraine, stroke and Alzheimer’s disease, epilepsy is the fourth most common neurological problem.
Unfortunately, the feelings of shame are not always lessened by the fact that it is in many ways an everyday condition. For many, though, humor is one way of easing any stigma. “I know the feeling of being a public spectacle,” writes 1nevermore. “My mom said when I had my first seizure, within 10 minutes, two ambulances, a fire truck, three cop cars, and about ten volunteer fire men were at our house, I can only imagine what the neighbors thought...”
Sufferers share not only their grief but also their insights as a way of helping themselves and others. “Also if you are lucky find a good dog,” writes lscott52. “I have one that tells me before I have a seizure that my brain is going funky, she won't leave me alone until the feeling goes away.”
“I receive an aura right about two minutes before I have a clonic tonic seizure," writes Forde. "I see pulsating lights that look like they are computer-generated, I see them in front of me me with my eyes open and closed. I also get the feeling of de ja vu and have been able to 'see' words that are being spoken to me. My surroundings begin to 'spin' around and then I black out. It's quite a powerful experience, who needs LSD!!! I think they are a god send as you have the time to get yourself comfortable.”
Possibly the best attitude about epilepsy is demonstrated by Just_Joe. Responding to someone newly diagnosed (and newly stigmatized), he offers the following advice: “go to one of the biggest intersections in major cities and look at everybody crossing the street.” From there, Joe suggests, simply notice the people who are walking with canes, who are wearing hearing aids, who are sitting in wheelchairs. Unlike these handicaps, people with epilepsy have an unseen condition and might be considered lucky.
Who could disagree? If all the people who had ever been diagnosed with diabetes, mental illness, cancer, heart disease, or any other unseen condition were suddenly made visible to one and all, few suffering people would feel alone. Rare is the life that ends without ever encountering some illness or difficulty. Meanwhile, scientists continue to learn and medicines continue to improve. Epilepsy just may be the life-changing experience that helps you become the person you were meant to be: more human and more truly beautiful.
This is one inspiring story of life with epilepsy, courtesy of You Tube: