1% of the population suffers from epilepsy and fully one third of patients with epilepsy who take available treatment do not have their seizures fully controlled.
Epilepsy is an umbrella term that covers many different types of seizures. The most obvious type of seizure, which is therefore most commonly thought of when someone hears the word epilepsy, is the tonic-clonic seizure (formerly known as a grand mal seizure). During one of these seizures a patient loses consciousness, muscles stiffen and there are jerking movements. Tonic-clonic seizures last for 1-3 minutes, and after regaining consciousness a patient feels exhausted, confused and has memory loss for the seizure. This is the usual form of epilepsy that I suffer from, and although my seizure disorder has been controlled by medication for 40 years, I can clearly recall that exhaustion and confusion.
Other types of seizures can be less obvious. Some patients experience an absence seizure (formerly known as a petit mal seizure), which is generally characterized by a lack of awareness, staring into space and an absence that occurs for only a few seconds. Absence seizures are quick in onset and offset. I’ve suffered only one of these seizures.
Seizures can result from known causes but also from unknown (also called “idiopathic”) causes; in fact, one of my family members suffered a single very long seizure when they were three years old, and to this day we don’t know why it happened. In some cases there are genetic causes in which a mutation in a gene leads to increased excitability of neurons in the brain. Other seizure disorders, like mine, can result from a head injury and are termed post-traumatic epilepsy. Unfortunately, many of our troops are returning from the battlefields with this type of epilepsy. And up to 40% of patients with autism can suffer from epilepsy as a co-morbidity.
Voices For Epilepsy
Do you know what to do if you encounter someone who is having a seizure? For most people, the answer is “No”. So here’s a simple list of do’s and don’ts.
- When someone is having a tonic-clonic seizure there is little you can or should do.
- Don’t try to hold someone down when they’re having a seizure.
- Don’t (and I mean NEVER) try to put anything in the mouth of someone having a seizure. (Some think you should put an object like a ruler in the mouth to stop the person having a seizure from biting their tongue, but it’s more likely that you’ll get bitten or they’ll bite a piece off the object and choke on it.)
- Do move objects and/or furniture away from the person having a seizure so that they don’t injure themselves.
- Do make the individual comfortable when the seizure stops.
- Do consider turning the person on their side after the seizure during the period of recovery.
- Do expect to find that the person who has had the seizure will be confused and tired afterwards.
What about my epilepsy?
It was the last day of school before summer and I was cycling home with a friend when I suddenly felt a heavy thud on the left side of my forehead. I didn’t realize at the time, but a drunken teenager with a grudge had thrown a house brick at my friend, but his aim was poor and I was the victim instead. The impact caused us to veer across the road. Blood streamed down my face, so much that I couldn’t see out of my left eye. I thought that I just had a bad cut so, as we were closer to school than home, we cycled the half mile back to school. The school secretary’s face told a different story – her face turned white and she almost fainted at the sight of me.
Before I knew it, I was in an ambulance on my way to the hospital where my parents were waiting for me. The local hospital didn’t have the facilities needed, so we were rushed to the Radcliffe Infirmary in Oxford, England where I underwent emergency surgery. It wasn’t just a bad cut – the impact of the brick on my head was sufficiently violent to crush part of the skull, requiring the surgeon to remove a two-inch diameter piece of my skull behind the forehead.
The first week after my accident is still unclear to me. Soon after getting to the hospital, I started having multiple tonic-clonic seizures, but after a week I was transferred back to my local hospital for another week and then after two more weeks in the hospital I was able to go home with prescriptions for phenobarbitone and phenytoin (Dilantin).
Strange as it may sound, I had to go without a piece of skull for a year before the surgeons would put a metal plate in my head. Unfortunately for my parents, I am not somebody who can sit around and do nothing, and I’m sure that they must have lost years off of their lives silently worrying as I went on with my life. Growing up in England, I loved to play football (soccer) and cricket, so I continued playing soccer, only avoiding heading the ball. And when it came to cricket I wore a helmet to avoid potential impact with an errant hard ball. Nowadays cricket players commonly wear helmets, but at that time they were rare, so it was quite a concession to my condition that I wore a helmet. It was not until I was a parent myself that I could appreciate the effort it must have taken for my parents to survive that year.
Eventually I had the metal plate inserted into my head. If my memory serves me correctly it was a thin mesh plate that would allow the bone to regrow over it, but I have never fully tested how strong it is to this day!
When I returned to school after my accident and hospitalization, I found it very difficult to concentrate and frequently felt dizzy, but my parents were relentless; they made me go to school every day and told me to do my best. And it wasn’t till later that I learned that my dad met with my teachers and told them not to go easy on me: they should try to get me to do my work like any other student. He was concerned that I might use my condition as an excuse and not make an effort. This was tough love, and not something I’m certain I could do, but for me it was effective.
By the time I finished high school my seizures were under control, my school work had improved vastly, and I’d been accepted to a university; however, my family physician decided that it would be better if I didn’t take medication as a university student. He suggested a regimen of reducing and eventually eliminating medications over the course of a few weeks – what he considered “slowly”. Nowadays it is unlikely that medications would be reduced so quickly, particularly the phenobarbitone; rather the reduction and possible elimination would take place over several months. But we followed his plan, I went off to the university with no medications – and during the first week I had several seizures. It wasn’t necessarily a great way to make new friends, but it was certainly a way to get noticed by lots of people. I was soon taking medications again and my seizures have been controlled ever since.
While I haven’t had any seizures since 1976, I have had one major problem with medications in the intervening years. In 2011 I was very ill, and was finally diagnosed with Steven’s Johnson syndrome. Stevens-Johnson syndrome is a rare, serious disorder that’s usually a reaction to an infection or a medication. Any allergy normally occurs shortly after one starts taking the drug, but I was even more of a rarity – I’d been taking the drug for several decades. The first doctors to talk to me were convinced that I had some kind of infectious disease, so I was put under the care of specialists in infectious diseases. They asked me where I might have picked up an infectious disease, but were stumped when I told them that I hadn’t traveled recently. They asked about my hobbies, and on learning that I was a sailor were sure that I must have been bitten by a tick or other insect on a nearby island in Boston Harbor. This still didn’t fit my symptoms, so they continued to speculate. And although I was in a pretty bad way, I was still sufficiently conscious to understand when I heard the infectious disease doctor tell me I was going to need a spinal tap to check for meningitis. That really got my attention. I became fully conscious very quickly, and asked to speak to the chair of neurology at Tufts School of Medicine, who is also a personal friend. It’s good to have friends in high places: he hurried over to see me and quickly diagnosed my condition as being an allergic reaction to my medication. With the mystery solved, he was able to change my medication and so I was able to begin a long, slow recovery over the next few months. Now I am stably medicated on Keppra and valproic acid (Depakote) and feel fortunate to have my seizures controlled with few side effects.
What is it like to have a seizure?
Although it has been more than 40 years, I recall as if it was yesterday what it was like to have one particular seizure. Before a tonic-clonic seizure, I had a warning sensation, called an aura, consisting of hearing noises and feeling my neck twisting. I had just enough time to sit down before I lost consciousness as the seizure further developed. And in this particular seizure I was on my way to an interview for a summer job. I had the aura, sat down and then the next thing I knew there was a crowd of people looking at me. I was confused, but they were clearly scared, so I tried to calm them down, telling them, “It’s okay, I just had a seizure”. Somebody had called an ambulance. When it arrived, I told the EMTs the same thing: “It’s okay, I just had a seizure. Can you take me along the road to my home where I can sleep it off?” But they were concerned and took me to the hospital. Of course, this might have been the right course of action for some people who just had a seizure, but I didn’t need to go. Instead, I missed the interview and, not surprisingly, didn’t get the job.
The One More Step Challenge: Are you able to take one extra step to do something you haven’t done before, with the necessary guardrails in place?
Celebrate our global community of virtual shipmates who will take their own steps on a personal voyage towards living a fuller life.
The Sail For Epilepsy voyage is one that will cross the world’s oceans. We are all on a journey: between port stops or life’s challenges.