Health and Wellness

Living With Epilepsy

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Picture this: it’s a cold January morning and a 9-year-old girl is walking into her classroom. She hangs up her coat and puts her backpack away. She sits in the middle row on the right side, stuck between two boys who are constantly messing about. As she sits, she begins to taste something strange in her mouth. “Is that blood?” she thinks, using her finger to check her mouth for the substance. She finds none and the teacher takes her place at the front of the room. The girl feels her chest begin to tighten as a feeling of fear overtakes; something is wrong but she can’t figure out what. As the teacher prattles on about the volume of a 3D shape, the girl’s world turns to black. She falls from her desk chair and hits the floor, her body beginning to seize violently as the two boys who sit aside her jump from their chairs and scream.

"Let's talk about epilepsy" in silver on a purple background
Epilepsy awareness graphic, courtesy of The Activist.

This girl was me. And this memory is the first time in my life that I had experienced a seizure.

More likely than not, someone you know lives with the disorder known as “Epilepsy.”

My goal in writing this article is to spread awareness to other UC students about what it is like living with Epilepsy, as well as give a voice to those who also struggle with it. Epilepsy is a condition that affects 1.2% of the U.S population which comes to roughly 3.4 million people across the nation (65 million globally). Additionally, 1 in 26 people develop Epilepsy of some form (there are different kinds of seizures) in their lifetime. It is a condition that can be had from birth, but also can develop over time, making it an elusive disorder.

Most of the time I have had tonic-clonic seizures, also called Grand-Mal seizures, in which the body first becomes rigid and is then followed by the typical “seizing” of the muscles and limbs. Rarely, I’ve had Petit-Mal seizures, also called absence seizures, focal seizures, or partial seizures, which is where you enter a catatonic state and/or the muscles in the face begin to twitch and become unaware of their surroundings. Petit-Mal seizures are much less common among the population as compared to tonic-clonic seizures. My tonic-clonic seizures always begin with an “aura.” Auras can include many things such as unpleasant feelings, unpleasant smells or tastes, and confusing thoughts. My auras are always a feeling of overwhelming anxiety as well as the taste of metal in my mouth, similar to the taste of blood. After the seizure has subsided, I am left with no memory of it occurring and a rush of anxiety that nearly (or sometimes does) send me into a panic attack. Overall, the experience is a terrifying one.

Seizures have impacted my life in many ways such as having to wait to get my license, having my license taken for 6 months following a seizure, constant checking/updating of medication, seizures in public places, many, many tests and visits to my Neurologist and Epileptologist, and the fear/anxiety that comes along with not knowing when another seizure will occur. My seizures are brought on by my changes in mental state, such as stress, as well as just random occurrences, which has made taking on challenges difficult. As I have gotten older, my Epilepsy has gotten easier to manage, as opposed to when I was younger and would have very bad and violent seizures.

Epilepsy is not necessarily a disorder that can kill you, but it is something that must be managed. It’s all about being responsible when it comes to your body and your health. Staying on top of testing, medication and doctors appointments is crucial.

What do you do when someone near you has a seizure? For tonic-clonic seizures, the first thing is keep everyone else away from the person and move any hard or sharp objects. Do NOT try to hold them down, stop the seizing, or try to bring them out of it. Cushion their head with something soft if they are on the ground. Time the length of the seizure and do not put anything in or near their mouth as this can damage their teeth or they could bite you. The most important thing is to let the seizure run its course and to make sure that nothing around them can harm them. As the seizure subsides, place the person on their side (the recovery position) and be reassuring. For partial seizures, guide them away from potentially dangerous places, stay with them until recovery is complete, be calmly reassuring, and explain anything they may have missed.

When should you call the ambulance in the event of a seizure? Most seizures do not require immediate medical attention but there are certain circumstances where it is needed. These include: if the seizure lasts more than 5 minutes, they have another seizure (tonic-clonic) as the first starts to subside, they are injured, or if you know it is their first seizure.

The UC community is likely to have many who are affected by this disorder, as well as those who are curious about what it is/what it’s like living with such a condition. For more information, see Epilepsy Alliance Ohio’s web site.

About Brenna Bergman

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