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What It's Really Like to Have a Seizure

I often wonder what people who have never seen a seizure think they’re like. When I was a bit younger, I used to think it was someone jerking around on the floor then sleeping all day after. (Not in a disrespectful way, I just thought they’d be tired).

And of course in films they’re shown in a fairly similar way to a seizure I think a lot of people might think they are – thrashing around, maybe foaming at the mouth…it can be portrayed as a gruesome experience. And to be honest, they can be. A grand mal seizure is scary, dangerous and life-threatening. However, not every seizure presents as a grand mal. There are some where a person is actually conscious. They might twitch or get little tics, and sometimes they’ll seem to “zone out” for a few seconds then continue to function as if nothing has happened.

I don’t have epilepsy, or a diagnosis for my seizures at all. I’ve had tests but they’ve all come back normal. However my seizures do present in many different ways, from grand mal to tonic to absent. Some of them I remember, most of them I don’t. Sometimes I know when they’re going to happen, sometimes I don’t. Life for someone who experiences seizures isn’t just dropping to the floor, foaming at the mouth, then sleeping. There’s a lot more to it! Allow me to explain what it’s like for me. 

A useful thing to know is triggers. So far my triggers seem to be pain (which is unavoidable with many types of chronic pain), stress, excessive heat and, as I’ve recently discovered, my allergies and asthma can trigger me. When I’m aware of a seizure on its way, I feel light all over, then very heavy. You know how when you go on a roller coaster or theme park ride, and when you go down a drop you get that “tummy left behind” feeling? Well, I get that, but all over my body. From that point I have from a few seconds to five minutes to alert anyone around me and try find somewhere safe. As I don’t have a diagnosis I’m not on any medication to prevent the seizures (they won’t even trial me on them), so I have to ride it out. Not the most ideal thing, really.

It’s like passing out; I usually don’t remember a thing. What my boyfriend says is when it’s a big one I go very tense then “shake” my joints. Even I can tell when it’s a big seizure. When I come around it’s like the Hulk has stretched all my joints, or punched my body repeatedly. On most occasions I’ll have bruises, scratches… I’ve even dislocated my shoulder and had a concussion.

large bruises and wounds on a woman's knee from falling down the stairs after a seizure

It’s terrifying when the seizure ends and I start to realize what’s happened. I try my best not to move too much. I don’t know right away the damage. I can’t talk and everything is blurry, like opening your eyes underwater. Sometimes I even see flashing lights – not in front of me, just to the edge of my sight. My boyfriend is usually the one with me the most when seizures happen and he’s had a lot of experience and training with dealing with them (he works in the health industry). The red flags of seizure-ing for longer than five minutes, big falls, excessive bleeding, shallow breathing, etc. all usually means it’s time to call an ambulance. I’ve managed to avoid a lot of those though. He will take my hand and the first thing I can do is lightly squeeze his hand. He’ll use this to communicate with “squeeze for yes, don’t squeeze for no.” It works very well for us.

It’s common during seizures to wee yourself, a side effect that can make outings quite scary. Thankfully I don’t have this often. I might be a bit damp, but that’s about it. It’s embarrassing but it’s normal, sadly.

Now here’s something that amazes me about seizures: I’m a weak woman, and I can’t lift much – even before I got unwell. My boyfriend has a hobby that involves carrying a lot of heavy stuff; he’s the strongest person I know. There have been times during a grand mal that he’s had to put his hand in front of my head to stop me hitting myself. I jammed my hand against his as it ended and he wasn’t strong enough to move his hand out of the way till I went limp. I’m weak, remember, but apparently the strength I have during a seizure is wild! Seizures are a horrible black cloud, but they amaze me all the same.

Sometimes I have seizures while I’m conscious. Sometimes my legs will just stop working and I’ll drop to the floor. There’s nothing I can do but wait. I also twitch and shake sometimes, and my head will nod, like a tic.

I said at the start that when I was younger I thought seizures were thrashing about and sleeping all day. Sleep is a big thing. Think of all the energy the body uses during a seizure – of course your body and mind will be tired! I can’t put into words the type of “tired” you feel after a seizure. It’s not just “I’ll just take a nap,” it’s not being able to lift your limbs or keep your head up. It’s absolute exhaustion.

woman lying down with her eyes closed after a seizure

Remember my experience of seizures will be different than others’; people will experience different things. I hate my seizures. They injure me, and they scare me like nothing else does. The deep pit in my stomach when I wake up, the worry that I’ve hurt myself, wet myself or even hurt someone else…it’s terrifying. But it’s apart of me now until they either leave me alone or we find a diagnosis so we can treat it. It’s OK to be scared, and I try and tell myself that every day. It’s not often I open up and tell people I’m scared of my seizures. I’m a light-hearted person – I make light of the situation and even make jokes about myself (nothing offensive, it’s just how I handle things). But truthfully, they scare me – a lot!

I hope one day to not be afraid anymore.

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