In the world of epilepsy, there are many different types of seizures. I have complex partial seizures that are secondary to generalized tonic-clonic seizures. Therefore, simply put, my seizures start in one part of my brain and then expand to the entire brain. A tonic-clonic seizure (AKA grand mal) is a seizure that includes unconsciousness, a bit of stiffness (tonic) and convulsions (clonic).
After a seizure, life feels altered. I regain consciousness almost immediately after the seizure, but it can take up to an hour for me to feel “not foggy.” That initial state after a seizure is called postictal state. It is an altered state of consciousness after a seizure. Some noticeable characteristics include drowsiness, confusion, disorientation, nausea, headache and/or amnesia.
Immediately upon returning to consciousness, my husband will start asking me questions. “What is the date?” “Who am I?” “Where are you?” I could not tell you how long it takes me to “feel” awake and start to wonder why he is bombarding me with questions that I cannot answer but feel like I should be able to. I know things are moving in a positive way when my answers are finally causing my husband to smile. I guess those are the right ones.
This is about the same time the pain starts.
Without a doubt, I will have a headache. The severity will be determined on if I actually hit my head when I lost consciousness. Surprisingly, I have not hit my head every time. The last time, I hit it at least twice. I was in the bathroom, and I hit it on the side of the vanity and on the ground. Who knows, I could have also hit it on the side of the tub or the other wall. It was a small bathroom and with a body not in control of itself, anything could happen. Because of this, I had a massive headache, not only due to the seizure, but localized head pain as well.
The confusion lasts for longer than I care for. I almost immediately know that something is wrong due to the facial expressions of those around me. I am on the receiving end of pity faces. I know what happened.
The last time, my husband took me to the emergency room. I knew I needed to go because of how much my body hurt. I did not fight him on it, but I was scared. I am always scared. I am in this incredibly vulnerable condition and require those around me to take the best possible care of me.
I am scared.
Hours go by when memories start to come back; usually, the first memories are of the previous day.
“Oh, we went to a hockey game, that’s right.”
“Why was Phil in town?”
“Oh yeah, we came up to the mountains this weekend.”
Slowly, all the details will filter in. It is as if my brain backs up my memory to where the most important details are and then presses play to move forward in time.
The next 24 hours are the most debilitating. My body is so vulnerable and now so dependent on another human being. Waking up after a seizure truly is the worst feeling I have ever felt. It combines every single worst physical, emotional and cognitive trauma I could ever imagine — all happening at the same time.
That’s what it’s really like to have a seizure.