So, what is it like?

What does it feel like?

     For a while, I thought I was the only person who was genuinely curious on what it felt like to have a seizure. My brother could not express himself and it was always a mystery to my parents and myself. Many years later here am I experiencing them for myself! Of course, there are many different types of seizures and even if two people had the same type, they may not experience them the same. Here is a little look into what I experience.


Tonic-Clonic Seizures

      My Epilepsy involves Tonic-clonic seizures. These are the types of seizures most people visualize when you first tell them you have a seizure disorder. To be proper; the tonic phase comes first which is when all the muscles stiffen and air can be pressed past the vocal chords making a moaning sound or a cry. In this phase we lose consciousness and immediately drop to the floor and bite our tongue, cheek, drool, and faces sometimes can become blue. But before this occurs, some people may experience an aura – some type of indication a seizure is coming. This could be a sound, smell, taste, feeling “strange,” headache, dizziness, and so on. Then comes the clonic phase; arms and legs begin to jerk rapidly in a rhythmic motion and here is where some of us may lose control of our bladder (or bowels) as our bodies begin to relax and consciousness returns.  On average, these seizures can last 1-3 minutes; anything over 5 minutes is considered an emergency and the person should be brought to the hospital. This is then all followed by a postictal phase which can last from 5-30 minutes on average (sometimes longer). We are tired, we are confused, and we are disoriented.

     Now here is my personal experience and how a typical seizure occurs for me. I will be completely fine all day, going about my daily routine. Suddenly, my mind stops and everything is black. If I am talking I stop mid sentence and let out a moan, if I am quiet I stare blankly. People will begin to call my name and I will not respond, nor will I remember. I then let out a scream (more like a shrill from what I have been told) and instantly fall to the ground and begin to convulse. Typically my seizures last 3-5 minutes which always ends in an ER trip. I never have lost control of my bladder or bowels, but I have bitten my tongue pretty bad and usually have blood on my face. I will slowly begin to regain consciousness and will try to make sense of what happened. I will not remember your name, but I will remember your face. Then everything gets black again. I am not seizing, I have just passed out. Sometimes I think everything is black but I am talking and responding as if I am fine. I am not fine. Do not leave me alone. I will not remember this. This happened once and I did in fact end up seizing again, which was atypical, and resulted in a medicated coma. Eventually, I truly do regain consciousness and slowly become reoriented..but I have no idea what happened before that moment, the day is wiped from my memory, and the entire week is fuzzy. My memory will still be effected over the next few days and I go into an emotional funk. Anxiety now controls my mind as I try to continue on as if nothing happened. This is my  life with Epilepsy.

     generalizedtcillustration

(Photo and educational credit: www.epilepsy.com)


If you have tonic-clonic seizures, leave a comment below and share your experience!

4 comments

  1. Leo Charlette says:

    What’s Happening i am new to this, I stumbled upon this I’ve found It absolutely helpful and it has aided me out loads. I hope to contribute & help other users like its helped me. Good job.

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