People with Epilepsy Describe How They Feel Just Before a Seizure
For many, an oncoming seizure announces itself with a weird, almost psychedelic experience.
Illustrations by Ben Thomson
This article originally appeared on VICE Australia.
According to the World Health Organisation, there are approximately 50 million people living with a form of epilepsy. It's one of the world's most common neurological disorders. Medical researchers still aren't certain what causes the epilepsy, instead preferring to label it as a range of different diseases brought under one umbrella by epileptic seizures.
Some people develop epilepsy as a result of head trauma, while others have it from birth. Seizures can be brief and barely recognisable, or they can last for hours. There are aspects to the condition too—including something called a focal seizure, an "aura" that involves a sensory overload before a seizure strikes.
These focal seizures can range from visual sensations all the way to a psychic sensation, similar to déjà vu. Despite a study finding that 64 percent of participants had experienced an aura in the last 12 months, it's an aspect of epilepsy that isn't widely discussed. To understand what this experience is like, we spoke to three people who experience auras, as well as a mother whose daughter has them before her epileptic seizures.
Richard is a 52-year-old man who was diagnosed with Frontal Lobe epilepsy two years ago
My seizures last only 10 to 20 seconds. So when I get a seizure it's manageable. The actual experience I get is very hard to explain, but it's this overall sense of euphoria. It's usually triggered by a déjà vu-type sensation that I've had since I was a boy. It's almost as if I momentarily tap into a different form of existence, like I've crossed over into a parallel world.
I've never used drugs. But if I had to compare [an aura] to anything, I'd assume it'd be the same feeling as heroin. It's a real type of rush and, as weird as it sounds, I really enjoy it. I'm disappointed when it passes.
It can be a bit inconvenient because if I get one while I'm driving, I'll lose my bearings. I'll also forget my pin number at the shops. If I'm at work I'll look vacant, which stresses me out because I don't want to look lazy.
Afterwards, I'll be confused and dizzy but it usually only takes a couple minutes to recuperate. It used to take a bit longer to get back to myself a few years ago. I've found that by stressing about it less, they're actually occurring a lot less.
Joanne is the mother and carer of a mentally disabled 13-year-old who's had epilepsy since she was five
I know when she's about to have a fit because she'll look up at something that no one else can see. The other thing that will happen before her episodes—but also during and after—are her premonitions. She'll tell us something that will come true, or she'll know something she has no way of knowing. For example, my mother has had a history of cancer and she's been able to correctly predict when she's had a recurrence. [My daughter] also knew my nephew was in trouble with the police when she had no possible way to find out.
We don't know how she does it because she's developmentally slow with an IQ of 48. She can't lie, she doesn't have the capacity to do so. She doesn't watch TV, doesn't use the computer or use social media, and she's only able to attend school for four to six hours a week. She lives quite an isolated life.
Epilepsy is a strange thing and I wouldn't wish it upon another person, ever. But it's made us realise that there's something special that lies in the brain. We aren't religious but it's made us believe in something unexplainable. In a way, we're grateful that some of the friends we've lost—people who couldn't cope being around it—because it's meant we've been able to have uninterrupted time with her to observe things like this.
Peter is a 36-year-old man who experienced his first seizure at 14. He was diagnosed with epilepsy two years ago
Right before I have a seizure it feels like there's this electrical being trying to take over my body through my shoulders. I remember once before I had a seizure—I was told I was just walking aimlessly for 20 seconds. I also taste what you'd get licking a nine-volt battery. I smell ozone. It's all a very electrical experience. The worst thing is, I have no memory from these events afterwards.
Epilepsy has really affected me. I was a mechanic by trade but had to give that up when I was diagnosed and suffered four seizures. What I really dread with this whole experience; however, is one day waking up in hospital needing a hole drilled into my brain. I've accepted the chance of waking up in hospital with tubes hanging out of me, just because I've had no luck with the medical industry. I've tried all these different medicines that just don't work or the side effects are too much for me to handle.
What I've found however is that cannabis is one of the few things that actually helps. A lot of my seizures are on days where I don't have cannabis. It helps smooth out a lot of my movements, my myoclonic jerks, and enables me to hold onto things or catch things if I drop them. It keeps me together.
Alicia is a 31-year-old who's had severe epilepsy for 22 years
The experiences before a seizure vary. Some are like this flash feeling and sometimes I see sparkling stars all around me: bright white, yellow, and orange. With the big seizures, I usually get flu-like symptoms where I get weak, need help to the bathroom, nausea, and everything smells sour.
Once after an epileptic coma I was entirely catatonic, which was terrifying. I remember trying to call out to my husband and the nurse but no one could hear me. I even remember vividly seeing a snake, but it turned out to just be a piece of medical equipment.
My epilepsy wasn't always that severe. I used to be entirely independent and I worked two jobs. Now, I can't do anything like that, I need constant supervision. I can't even go into a different room alone. It's very sad when you realise what you used to do is something you'll probably never do again... I'm scared everyday that epilepsy will win and take my life. I know I get closer with every seizure because it kills brain cells slowly.
It's a shame that there's such a stigma surrounding epilepsy. Seizures and epilepsy are so common yet no one knows what's happening or what to do. For me, when my seizures were controlled for a few years, I had good friends. Now I've lost some as it's become uncontrollable again. My husband almost left me because he couldn't handle it. There's this constant feeling of being judged, and that's almost the worst part.
Words have been edited for length and clarity.
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