I’ve always been one of those people who loves to plan. I make lists, arrange hangouts with friends, and plan my future as best as I can. When I walked into Linda’s the morning of October 1 of last year, I was planning to get breakfast and go back to my room to watch a movie. It was supposed to be like any other Sunday. Suffering a grand mal seizure was the last thing I planned for.
I woke up on the ground looking up at a paramedic, trying to fit the pieces together. Where was I? Why were there paramedics? Why was my arm in excruciating pain?
As I regained consciousness, the paramedics patiently tried to explain that I had suffered a grand mal seizure. Every time they explained it, I nodded like I understood, and then asked again a minute later.
When I was finally conscious enough to really take in the information, my brain processed the word seizure. I had heard of seizures and epilepsy before, but that was the extent of it. I didn’t really know what a seizure was, and I didn’t understand the difference between that and epilepsy.
A seizure is what happens when the nerve cells in a person’s brain behave excessively or not as they should. A person can have a seizure for all different reasons: genetic disorders, a stroke, a brain injury, or a brain tumor. However, if someone has more than one seizure for unexplained reasons, they will most likely be diagnosed with epilepsy, which is a brain disorder that causes repeated seizures or seizure activity.
There are a few different types of seizures. They can be as physical as a grand mal seizure, where a person collapses, becomes unconscious, and begins to convulse. However, there are other types of seizures that aren’t even noticeable. During an absence seizure, an epileptic will begin staring and zoning out. Myoclonic seizures are characterized by the simplest muscle twitch. Oftentimes, bystanders aren’t even aware that someone is suffering a seizure, yet every single type of seizure can cause brain damage.
After undergoing tests that measured my brain activity, it was determined that I had epilepsy. Epilepsy has no cure, just different types of treatment. In cases like mine, I take medicine to prevent seizures and avoid my triggers. Things that can trigger seizures in epileptics are, but not limited to, flashing lights, excessive alcohol consumption, dehydration, and lack of sleep. However, other people are not so lucky. Many people with epilepsy do not respond to medication, so they have to resort to other methods like brain surgery. Repeated seizures can lead to extensive damage, to the point where a person can’t even walk and talk anymore.
Looking back, I realize now that even before I was diagnosed, I should have had some knowledge of how to help someone who is suffering from a seizure. When I had my first grand mal seizure in Linda’s that morning, I found out later that students were taking videos of me while I was convulsing. There is not nearly enough awareness surrounding epilepsy and seizures in general. People suffer seizures every day for all different reasons, and most people do not know seizure first aid.
If a person has a grand mal seizure in a body of water, they can drown instantly. If they collapse on land, there is a great risk of concussion or other injury. If the person is lying on their stomach while having a grand mal seizure, they are at a much greater risk of choking due to the restriction of the throat.
If you witness a person suffering from a grand mal seizure, the first and most important thing you can do is call 911. Next, make sure they are laying on their side and move them away from any objects or furniture that they could hurt themselves on while convulsing. The myth of someone swallowing their tongue during a seizure is just that- a myth. Do not ever put anything in their mouth while they are convulsing, as you can risk your own safety. If possible, time the seizure, so that you can give the paramedics as much information as possible when they arrive at the scene. Seizures that last more than 5 minutes can be fatal.
When the person wakes up, gently explain to them that they suffered a grand mal seizure and that they are okay. Give them a chance to process the information. They just went through a very traumatic experience, and they may not understand what you are saying at first. Even if you are afraid, be as calm as possible.
With people with epilepsy, there is always the risk of Sudden Unexpected Death in Epilepsy. This means that a person with epilepsy could suddenly die from a seizure, with no real explanation or reason. While this is rare, it does happen. 65 million people currently live with epilepsy and one in 26 Americans will develop epilepsy in their lifetime.
I have to believe that the students who tried to take videos of me that Sunday morning did so because they didn’t know what was happening. There is a problematic stigma that surrounds epilepsy. Epileptics face complications in their lives that go beyond medical dangers. People often believe that we aren’t capable of things that other people do, like holding babies, driving cars, swimming, you name it.
Due to my diagnosis, I was let go from my lifeguarding job after six years. I also had to discontinue my swimming career after 13 years, two of which were spent competing for the varsity team here at Sacred Heart.
While epilepsy is very much a physical disorder, it is so much more than that. Last year, after suffering a second grand mal seizure in March, I struggled with paralyzing anxiety. There were days I didn’t leave my dorm room in fear of having a seizure in public. If I get any less than 8 hours of sleep, I feel anxious all day. With every muscle twitch, I am in fear. One night a few months ago, I couldn’t fall asleep. It soon became 3 a.m. and I knew I was pushing my limits, but I didn’t know what to do. The more I feared not being able to sleep, the more awake I was. When I tried to get up, my heart rate went up to 135 beats per minute. I immediately woke up my mom to help me as I suffered from the worst panic attack I’ve ever experienced. I was incredibly dizzy and my entire body shook with fear. It took 5 minutes to finally start breathing normally and calm myself down.
It can take years to determine what anti-seizure medication works for you. The first medication I was prescribed made me incredibly depressed, fatigued, and anxious. Many of the medications can cause suicidal thoughts and other horrible side effects. The process of changing medications is long and difficult. It’s been over a year since I was diagnosed and I just began the process of switching over to a new medication. There are still days when I have trouble getting out of bed.
Epilepsy isn’t impossible, though. Just a few weeks ago, I drove a car for the first time since I was diagnosed. I pushed through the fear of going into the lake or the ocean on summer break. While I’m able to overcome some of the anxiety I’ve experienced, it’s still there each and every day.
Epilepsy is more dangerous than people think, and without the proper knowledge and preparations, people who suffer from it are at even greater risk. I am lucky to be able to do most of the things that I was able to do before I was diagnosed, but some people are not. It’s in these cases that people need you to step in and help them. To soothe them, to understand them, or even to save their life.
November is Epilepsy Awareness Month. Please take a minute to educate yourself so that you are prepared to help someone who needs you if the time comes.