What does it feel like to have a seizure?
When people think of seizures they generally think of tonic-clonic, which are the most visible. It causes the person to lose consciousness, and the body jerks and shakes at a very rapid pace. However, there are many different types of seizures, and many people experience more than one type.
One of our dearest and most courageous Embrace users, Destiny Burns, experiences 5 different types of seizures and they are all very different. Destiny is a young woman in her early 20s, and her seizures started in her freshman year of high school. Her candid recount helps us understand what people with epilepsy may be going through.
We hope it opens a door to talk more openly about epilepsy, and to understand that it is a diverse and complex condition, and it’s experienced differently from person to person. This knowledge should lead to changed attitudes, less labelling and more understanding.
Destiny describes her seizures below.
Basically, those feel like a big electric jolt to my mind and body, and my body jerks - or spasms - and I have no control of it. They usually come in clusters, almost like hiccups. I often describe them to people as being like when their foot jerks when they are trying to go to sleep. Myoclonic Jerks (MJs) are very annoying and frustrating, but can also be very scary and dangerous. Because I have these seizures, I have to do everything I can to prevent accidents. I have to do precautionary things at home like using sippy cups/bottles or cups with lids to drink, my dishes have to all be plastic and not glass, so that if I jerk or spasm, I’m less likely to hurt myself.
If I’m at a restaurant where there is a buffet or a friend’s house where we are serving ourselves dinner, usually one of my friends will fix my plate for me and set it on the table for me for safety reasons. At restaurants where they use glass cups, I usually ask for a child’s cup with a lid and straw just to be safer. These things may seem over the top of safety or paranoia, but they have prevented a lot of major injuries for me.
These seizures can also make me fall to the floor suddenly if I am standing. I always have to have it in the back of my mind to be careful, because they can happen at any time. When I have a lot of these back to back, I take meds if possible, and get somewhere safe, because I know that I more-than-likely have a tonic-clonic coming on, so I try to get to the floor with my service dog, Ranger.
I just blank out for short period of time, and most of the time I don’t even realize it. Sometimes it can be in mid-sentence. Mine usually last around 10 seconds but can go longer sometimes. They can be dangerous if I’m doing something during them even as simple as walking across a street.
Complex Partial Seizures
I go into almost a childish state of mind. I never remember what goes on during these. My friends and family have saved me from things like trying to strip my clothes off in the middle of Walmart, trying to walk in front of a truck coming down the road, trying to put my hand in a pan of hot grease, and even more. I get very defensive during these events, almost like I don’t want people to touch me.
I wander around cluelessly even in storms or other situations and can go into dangerous areas if nobody is with me to help. I come back to awareness later knowing nothing about what just happened. Because of these seizures, at my apartment I have my stove/oven turned off at the fuse box so that I don’t try to do something stupid while having a seizure.
Simple Partial Seizures
These are also auras. I remember these and am aware during them. I don’t always have one before a grand-mal seizure. I typically feel like my body is reversed, I feel spacey and floaty. A lot of times I say I feel like an astronaut. I’ll smell things like something burning or flowers, and get a strange taste in my mouth.
As I said before, I don’t always feel them coming on. I can feel myself fading into it, knowing that I cannot stop it, and then later I wake up on the floor and I always know what happened. I hurt so very badly all over my body, I feel like I’ve been run over by a train for days. My head feels like it’s gonna explode. It’s torture.
Destiny helps us see the vast diversity of seizures. They can range from very mild to severe, and affect your life in different ways. If you know someone that has epilepsy, perhaps it will inspire you to ask about their seizure types, and the challenges they pose, so you are better informed to help. If you have epilepsy, we hope Destiny’s descriptions give you relief in knowing that you’re not alone in your experience with epilepsy.
Read more about Destiny’s experience with epilepsy, and how Embrace has helped her feel more free and independent.