Epilepsy: My Story

Epilepsy, otherwise known as seizure disorder, is a disorder in which nerve cells are disturbed in the brain, causing seizures. Approximately one in 26 people within the United States will develop epilepsy at some point in their lives and around 65 million people around the world currently have epilepsy.

Seizures are uncontrolled electrical discharges in the brain. They can affect consciousness, movements, behaviors or feelings. Some symptoms include a staring spell, confusion, uncontrollable jerking movements in the limbs, cognitive symptoms and loss of consciousness or awareness.

Seizures look different for everyone and most are hard to pinpoint to a certain cause. I didn’t learn I had epilepsy until I was 15 years old. I had been sleeping peacefully when I suddenly woke up. Something felt off. I wasn’t sure how to explain it. My head was pounding and I felt nauseous. I tried to move my arms and legs but couldn’t. Realizing my state of paralysis, I tried calling out to my mom. But no sound left my mouth. My headache increased and I blacked out completely.

The next morning, I slept in extra long and told my mom what had happened. This eventually set us down the path of visiting different doctors and eventually, I landed in the hospital.

I was at the end of a four-day sleep study (a sleep study is a test that records the brain and body’s movements while sleeping) when the doctor came back with my results. They had me hooked up to an electroencephalogram (EEG) to observe my brain waves and to look for any abnormalities. (An EEG is where the doctors attach electrodes using a pastie glue to the patients’ head.) I was diagnosed with epilepsy.

In the coming months, I was prescribed Keppra to combat the seizures. The medication had to be constantly adjusted and the side effects were disheartening. I had to get my blood drawn once a month, sometimes more, and I had to describe the side effects of the medicine to my doctor.

Epilepsy can’t be cured, but medication can help. The only problem with seizure medications is that the side effects often affect things such as emotions and behaviors. Depression and anxiety are high among the side effects. At one point, the medication took away all my feelings and I felt nothing. I soon learned I had to go with the brand name of the medication because the filler used in the generic medication was causing these side effects for me.

Finding the right medication, the best doctor for you and finding a way to regain your life is really important if you have just been diagnosed with epilepsy. Don’t let seizures stop you, but also listen to your doctor! They have your best interests at heart.

I had to stop driving when I was first diagnosed with epilepsy. Additionally, I had to stop the swim team until I was on the right medication. It was really hard to stop doing what I love and to quit driving when I was so close to getting my license. But health and safety should always come first.

It took a long time for things to return to a semi-normal state. I still have to go to the hospital about twice a year and I continue to get my blood drawn every other month. The point is, epilepsy affects me even though I don’t want it to. It affects my day-to-day life and most people don’t even know about it.

Here’s some things you can do to help out someone with epilepsy:

Know what triggers their seizures.

Examples include flashing lights, visual stimulants, low blood sodium, lack of sleep and fever. That way, you can help them avoid situations that can trigger seizures.

Know what to do if they experience a grand mal.

A grand mal seizure is when someone drops to the ground and has convulsions. Clear the area around them so that they don’t hurt themselves and turn them on their side. Time the seizure and if it lasts more than five minutes, call for help immediately.

Check in with them.

Some seizures are small and easily missed. If you notice them zoning out, doing repeated movements, holding their breath and/or not being responsive, stay with them until the seizure plays out and make sure that they are okay.

Epilepsy affects many people and you most likely know someone who has it. The best thing we can do right now is to make ourselves aware of what 3.4 million people go through on a day-to-day basis. You can also pull out some purple (the official color for epilepsy) and wear it this month in support!