So, what’s a seizure really like?

Epilepsy sucks.

 

In the past 3 months, I have had ten complex partial seizures.

 

A complex partial seizure is one where the seizure causes loss of consciousness, but not complete brain function. A lot of times motor control and regular activities continue to act “normal,” but the person in unaware of their surroundings. The person having the seizure may appear to be in a state of limited consciousness and may act similar to someone who is drunken or mentally disabled, precisely because what is happening in the brain is a state of partial impairment. When the seizure is over, the person regains consciousness and often has no idea what has happened and is in a groggy, confused stated which can last for anywhere from a few minutes to a few hours. It is common for the person to take a nap to “recharge” the brain.

 

I will describe a few of my seizures, from both my perspective and supplement the details with what I have pieced together from what my husband or friends have told me. Since complex seizures impair memory, it is always necessary for me to get details from other people after the fact. Even my complex seizures have bits and pieces of memory, but it’s snippets at best, and sometimes not even that.

 

February 25, 7:40 am.

I came to work late today. I was on the 17 bus. I know where I need to get off; I am familiar with the route. I know I only have about 5 blocks to go before I pull the cord.

All of my seizures start the same. I get a throbbing, tingly feeling in my arms and hands. It usually starts in my right hand, although sometimes it’s my left. Unfortunately, I feel it coming. I shut my eyes and hope it’s only a simple one. In simple seizures, it goes away after about 30 seconds and I stay conscious. I remember asking the bus driver which way Edison is. He says it’s that way. (I must be asking because I know I’m seizing.) I leave the bus.

I’m in a parking lot. There are lots of cars. It’s a tow truck company. I have to keep my eyes on my feet because it’s icy. Keep walking. Keep walking. I know I’m close.

The throbbing feeling went away. Good, that means the seizure itself went away, but now it’s all in my head. Now I have to figure out how to get to work. I shouldn’t have gotten off the bus. It wasn’t my stop.

This sign has a president’s name on it. Good. It’s the street that my school is on! I’m turned around. I thought I had to go right. Turns out I have to go left. I look right. Nope. I look left. There it is! I’m a good three blocks away and on the wrong side of the street, but at least I know where I’m headed now. I still have to avoid ice.

Hey! There’s Charles! I know Charles. Charles? Charles will let me into the building. Thanks Charles! It’s cold out. I’ve been out here for a long time. How long have I been out here? It’s almost time for school to start. I should go to my office.

Yah… I’m tired. I think I will take a nap. Naps sound good. I think I’ll sleep for awhile now that I’m at work. *I take a nap at my desk for 20 minutes*

 

March 3^rd, 9:30am.

I had a student in my office. I was doing my normal check in once a week. We were in my office instead of in the hall because we were talking about information regarding the county, so I needed info that was on my computer, and the check-in takes longer than usual when it’s this sort of meeting.

I felt it coming, the same way I always do. I tried to get her to leave. I pulled out my pink pass pad so I could write a pass and get her to leave. My mouth couldn’t form words. My hand couldn’t form letters. I stared at the clock.

Um. Um. Um. Veronica, help. Somebody, notice. Somebody, please notice that I’m struggling. This student needs to leave! She needs to get out of here before I blank out! Um. Um. Um. My pencil is swirling over the pass, but I’m staring at the clock and my brain isn’t processing numbers. Um…

Next thing I know, she’s staring at me. Tu is asking if I’m ok. He’s writing her the pass, and telling her to go back to class. I have no idea how long it has been.

He told me later it was only a few minutes, and I was stuttering. She was fine with the whole thing, but I was stuttering and stammering the whole time. Obviously, I don’t remember. The whole thing was hazy both before and after. As usual, I felt like I had to take a nap. Damn.

 

March 29^th, 9:00pm.

Shawn and I were at “Blackacre,” the William Mitchell Spring Formal Dance.

He and I were sitting at a table eating some hors d’oeuvres when I felt my normal seizure symptoms. My right arm got tingly and throbby. I reached out and grabbed his hand to squeeze it because, as usual, I lost the ability to use my words. He squeezed my hand back and waited for it to pass.

The room, since it was already filled with a variety of lights, noises, and people, became very blurry. I recall hearing my own voice. “Who am I?” “Where am I?” “What is this?” “I don’t understand.” “What’s happening?” Shawn always patiently answers my questions. I never understand his answers when I’m seizing. He told me that his friends came over at some point and didn’t understand what was happening with me. At some point I did come out of it, and obviously figured everything out after being reminded. Shawn and one of his friends gave me a large glass of water. I was groggy, but woke up and continued on with the night.

 

April 17, 2014:

I got onto the bus leaving Edison at the end of the day. I was sitting on the bus when I felt my seizure symptoms kick in. I crossed my fingers and hoped they would go away and that it would only be a simple seizure. After a few seconds, they weren’t going anywhere. I reached into my purse and pulled out my phone. I reached into my recent calls and dialed the wrong number. I quickly hung up. My brain was starting to get fuzzy. I pushed the number for Shawn. The last thing I remember is looking the bus aisle at the student across from me. In my head, she looks familiar, but I don’t think she actually was.

The next thing I know*, I got off at my stop. I’m still on the phone with Shawn. He says to me, “Where are you?” In my head, “6^th” but I don’t know if I said it out loud. I didn’t walk toward 6^th. I knew he was driving up 6^th. He told me he was. But I was walking toward 7^th. I’m on Nicollet and 7^th, and I keep walking toward 7^th. I know in my head that I need to turn around, but my feet won’t go. Shawn keeps repeating himself on the phone. He keeps asking me, “Where are you?” and I can’t use my words. I can’t use them! He keeps asking me! I try to talk, but words don’t work. I see things. Pigeons. Office Depot. Homeless guy. Construction zone. Caribou Coffee. I know where I am. This is my bus stop. He needs to drive up 6^th. Why can’t I tell him that?! My words. Aren’t. There.

I cross the street. I watch the cars. Ours is red. I know we drive a red car. I watch for red cars. There’s a black Fusion. Ours is a Fusion. But it’s not black. Our old one was black. We don’t have that one anymore. Shawn is still on the phone. He has now figured out that I’m on 6^th. I don’t know if I told him or if he told me. Regardless, he’s driving up 6^th. I’m waiting. There it is! Our license plate says 311. It’s him! I get in the car.

He’s frustrated. He hung up on me before I got in. I know he’s upset. I know he’s not mad at me. He’s mad at epilepsy. Epilepsy sucks. I want to take a nap.

 

*According to Shawn- when I called him, I was barely able to use words, but was coherent enough that he figured things out. He was at work, and quickly packed things up and got in the car.  He figured out I was on the 10 because that’s what I always do, and on the way to Minneapolis, so the first half of my commute rather than the second. I called him when I got off the bus in an attempt to tell him where I was, but I was barely able to speak. How he figured out the exact streets I have no idea. His most frustrating part was where to pick me up. He was at the point of calling MetroTransit to see if he could talk to the bus driver about where I got off, but apparently he was trying to do so was when he finally found me.

Fortunately for me, it’s 3pm and it’s a well-traveled, highly populated route that I take daily. I consider traveling at that time and location safe.

 

 

Where am I headed from here? Well, I met with my doctor earlier this month. We modified my medication a little bit in January, but, as I mentioned, I have had over 10 complex seizures since then, and more simple seizures in addition to those 10. We would like to do more drastic medication adjustments. I am currently taking large(ish) dosages of three medications, and we are going to keep 2 of those medications, and swap one completely for another. Since doing a complete medication swap is difficult and dangerous, I will do that in the hospital in the EEG unit in mid-June. Hopefully doing so under surveillance will prevent or minimize the effect of any breakthrough seizures, especially if they are major ones like grand-mals.