What Seizures Feel Like

I've been asked a million times via e-mail, Twitter, Facebook, etc...

What do my seizures feel, taste, smell, sound etc. like?

Well... It's very hard to explain. But I'm going to try and break it down.

Feel: They feel absolutely horrifying. Sometimes the thoughts you have can turn into terror, especially if you are terrified. This can lead to awful hallucinations and thoughts of death/dying for me. My heart beats out of line, but it beats hard. I can feel it pound in my chest, and it almost seems like I can hear it pound in my head. Similar to a panic attack, but much, much worse.

I can rarely stand during a seizure, even if it's a non-convulsive one. I have to sit down on the ground, which is now practically a reflex. I will immediately drop anything in my hand, so I do my best to set down anything I'm holding if I begin to feel funny. This doesn't go over well at work or at home with my parents. Sometimes it will seem as if I'm trying to get out of my work and pretend I'm sick, but it is never that way.

When I wake up from a Grand Mal seizure, it feels like I've been hit with a giant hammer. My whole head feels this awful pain that I can't explain. It's like a million migraines stuck together, and the rest of my body is paralyzed for a while. I usually forget EVERYTHING, including my name, how old I am, my family members, etc. It has taken me up to an entire day to remember things sometimes.

Other seizures don't disorient me as much. I usually can't do anything for up to 15 minutes, but that is short compared to Grand Mals (Tonic Clonic). I will still feel shaky or limp for a while, but I do my best to continue whatever it was that I needed to do. If possible, I will sleep as soon as I can. Lack of sleep is a huge trigger for me.

Taste/Smell: You may be wondering why "taste" and "smell" is in this blog. Well, taste is something that comes along with experiencing a seizure. Many people taste things like peanut butter or even bleach before or during a seizure. I get an odd taste that is very similar to having a penny in your mouth, but also a hint of ammonia. They are both a taste and a smell... very hard to explain. My doctor claims that this could be the brain releasing a chemical, but seizures activate several senses and memories. Smell and taste are a part of our memory, so it could be that as well.

Sound: This is just the worst part for me. It's like a million radios playing a million stations at the same time. Sometimes I hear music playing, and other times I hear scenes from movies or voices of loved ones - except no one is around me, and no TV or radio is near. It's awful because it's overwhelming to hear so many things at once.

There were times in my early seizure days that I would get terrified so much that I would hear voices telling me I was going to die. Voices saying that I wouldn't make it. Then I would hear voices telling me it would be okay. Usually it was the voice of my father, even though he wasn't around me or even in the house. It's just a crazy thing!

Sight: When I say "sight", I don't mean what my seizures look like... I mean what they look like to ME. It's odd because often, the words I hear begin to translate into text. As if I was watching the credits of a movie, or reading a book. Each thing I hear turns into text in which flashes in front of my face. I've even seen math equations and my Facebook page. When I use to play video games (I stopped due to seizures) I would see what my video games looked like on the TV screen. It's really amazing, but terrifying.

There is a beautiful side to many of my seizures. I'll see colors and lights that look like the picture below. Almost feels like I'm in heaven, except I'm panicking half the time. I've learned to deal with the simple partial seizures. I don't really freak out over those anymore. I actually enjoy them (I know, it's wierd.) and I will try to paint or draw them afterwards. I always tell people that God blessed me with these seizures, because I get to see amazing things that some people never will see.

This is the closest thing I can find to what seizures look like to me during simple partial seizures. These are the seizures I have most often, up to 100+ times a day. They have increased lately, but they look more beautiful as time goes on. The only problem is that they can last too long and become scary from time to time because I fear they wont end. During these seizures I am unable to stand or do much of anything except for stare.

Triggers:

1. Lack of sleep. This is probably the worst.
2. Too much caffiene. Learned this recently upon getting a new job and drinking coffee each morning.
3. Flashing lights.
4. Loud noises.
5. Video games.
6. High pitches noises/frequencies.
7. Not eating on time each day.
8. Not eating enough each day
9. TOO much activity... Makes it hard to exercise enough!
10. Computer usage (You wonder why I have a blog? lol)
11. Frustration/Fear/Anger/Depression. During these times I seem to be at my peak of seizures. Especially if I've been crying or in an argument.

There are tons more and I would love to list them all but I would be up all night!

So that is what seizures are like for the most part. I will revise this blog and add more as I think of things. My seizures are complex compared to most people, as I have so many different types. This is just a basic overview.

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 Please also be sure to check out this short film called 
"A Seizure" by Nathan Jones. 
"This film plunges the viewer into the visceral experience of having an epileptic seizure — a phenomenon marked by loss of consciousness, sensory disturbances, and sudden convulsions."

 

>>>Click here to view the film <<<