I get asked regularly when someone learns I have epilepsy about what seizures feel like. I read a joke online that it feels like the spin cycle during laundry. That’s actually a pretty astute statement.
Some people with epilepsy have an aura prior to having a seizure. It can be a smell, a sensation, even a sound. When I was a teenager, I had an aura before each episode. My hands would clench involuntarily. I would then have about 15-30 seconds before the full tonic clonic seizure began. This was usually enough time to get back into bed (because my seizures were first thing in the morning) and shout for my mum. This is why I had so few severe injuries in the first years of my diagnosis. As an adult, I no longer get auras. I have no indicator that a seizure will happen, not even time to go from standing (or running) to sitting.
First, a seizure feels to me like a migraine. Migraines actually follow the same neurological path as seizures. Headaches and migraines make me nervous, especially when they won’t go away. Fortunately, I don’t get headaches often. Because of the combination of internal head pain and muscle spasms, my head generally feels like I just banged it on the wall a few dozen times. Which also may have happened, because of course, there’s always the risk of concussions.
For the rest of my body, a seizure feels like a cramp. Specifically, a charley horse. You know the ones that wake you up suddenly in the middle of the night and your leg or foot is in spasms and you can’t get out of bed to stretch because you’re still partially asleep and wrapped in the bed sheets and all you can think about is how badly each spasm hurts. That’s what it feels like. The next day, when you try to put your weight on it and it’s really sensitive, that too. For me, seizures feel that way over my entire body.
I almost always bite the inside of my lower lip when I seize, so that usually gets really swollen. Then every time that I talk or smile for the next couple weeks, it’s a reminder. If it’s not the lower lip, it’ll be the inside of my cheeks. The inside of my mouth is a map of scar tissue.
Afterwards, I’m tired. Exhausted. Completely tuckered. My muscles ache for days. Everything hurts. I can sleep solidly for days, even when it appears to be passed. Overall, seizures feel like a migraine and a muscle cramp that doesn’t go away. I’m physically sore right afterwards, and for at least a week following. Sometimes I can hold off on the exhaustion for a few days, but it always catches up with me.
Tetany is a similar feeling to seizures. Tetany is when all of the nerve cells in the body are activated, which then stimulate the muscles. This causes spasms throughout the body. It’s a medical condition on its own, but it’s actually a place that can be reached through breathing exercises. A yoga studio that I have attended offered a breath workshop which focused on core breathing. The instructors indicated that the way the oxygen would be entering the body could cause physical discomfort, including a feeling of tetany. I still signed up. About halfway through, the tetany kicked in. I didn’t panic, because I was lying on the ground on a mat, with a pillow under my head, and the instructors knew about my condition. So I just let it happen. It only happened in my feet, hands and face, but not the rest of my body. It felt so similar to the sensation of a seizure that it had terrified me at first. After the workshop, I immediately told my husband about it and we registered for the next workshop. He wanted to know what it felt like. During the workshop we attended together, he experienced tetany as well and it gave him a better understanding of physically what it felt like for me.
Physically, seizures are painful. They haven’t stopped me from engaging in activities however. I’ve run in races, skated and gone hiking after a seizure. I am still ridiculously sore afterwards, but that’s the reality whether I stay in bed or on the couch or if I am active. I’ve learned that in my reality, I can choose to take an easy route or I can engage in the lifestyle I want. The lifestyle I want is athletic and active. This may be more difficult at times, but that doesn’t mean that it’s not the best decision for me.