What does it feel like to have a seizure? It’s a great question - one that I have been asked and one that I was not able to answer for many years. Of course, everyone has different symptoms during and following a seizure, most of which are attributed to the type of epilepsy you have. But thanks to Daniel Radcliffe’s acting in Harry Potter and the Order of the Phoenix, I was finally able to put an image to the feeling.
I was diagnosed with generalized tonic-clonic epilepsy, often known as grand mal seizures. This is the type of seizure that you see in the movies and on medical dramas. It begins with the tonic phase, the patient stiffens, loses consciousness, often biting their tongue or cheek. Then the clonic phase occurs, during which the body begins to rapidly jerk, and their face often turns blue due to difficulty breathing.
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Seizures of this type usually last 1-3 minutes and after it's over patients enter the postictal phase. The National Library of Medicine and other publications state this phase usually lasts 5-30 minutes. In my experience, the emotional aftermath lasts for hours and the physical recovery takes days. For me, waking up from a seizure was a combination of confusion, memory loss, uncontrolled crying and stretching, as if to get out of my own skin. A tonic-clonic seizure is often compared to running a half marathon in a matter of minutes. In the days following, your body aches, you can barely open your mouth from clenching it so tight, and there is pounding inside and outside of your head from throwing yourself around. And sometimes you get to top it off with a trip to the dentist because you chipped a tooth on the side of a toilet (this is a true story).
So, why Harry Potter? A few years after being diagnosed with epilepsy I was rewatching Harry Potter and the Order of the Phoenix when I finally saw what I felt. (spoilers ahead) At the end of the movie Harry is writhing in pain on the ground while being possessed by Voldemort. As he laid on the ground stretching, moaning, his friends awkwardly looking on, I finally felt like I had a bird’s eye view of my life. I was able to point to something so that if I couldn’t verbally explain my experiences at least I could visibly explain them. So, thank you Daniel Radcliffe!
​Check out Hailey's GoFundMe Page for Empowering Epilepsy: https://gofund.me/ac41240b