Stories from Our Advocates

It is often difficult to describe how a seizure feels to someone who has never experienced one. 

When I was 10 years old, before I was diagnosed with epilepsy, I called my seizures “dizzy headaches.” I don’t actually feel dizzy during a seizure, but that’s the easiest way to explain it.

As an adult, simply put, I tell people that it feels like there’s a tornado in my head

That basic description gives an idea about how a seizure feels for me, but it doesn’t convey the fear, the confusion, and the physical fatigue feelings and emotions everyone has experienced that come with having a seizure.

Imagine driving in your car, sitting in a meeting at work, sitting at your desk at school, crossing a busy street, holding your child, or doing any other normal activity. Suddenly, you’re hit with a sensation you can’t quite explain. Everything around you keeps going, but your brain and your body have separated from the world around you. You’re aware of what’s going on and that something isn’t right, but you have no way of stopping what is happening. The metallic taste in your mouth, the nausea in your stomach, and the feeling that you are spinning create a sense of dysphoria. You know something isn’t right, but you are powerless to do anything about it. This is how a simple partial seizure feels and though I haven’t had a seizure in several years, it’s a feeling I vividly remember.

After the seizure, you might feel embarrassed because you may have said or done something you don’t remember or that people think is weird, you may have had an accident, or you may have injured yourself or someone else. Unfortunately, the seizure subsides, but the social, physical, emotional, and mental trauma endures. I, and many other people with epilepsy, have experienced damaged friendships, cuts and bruises, depression, and memory loss as a result of seizures. While the seizures themselves are bad, these side effects are arguably worse.

I know the seizure experience is different for everyone what doesn’t change is the need for support. For caregivers, family members, friends, and anyone who is around someone with epilepsy, it’s important to remain calm, to stay close, and to be as supportive as you can. As scary as a seizure is for everyone else, it’s different and perhaps scarier for the person experiencing it.