Today is a joyous day. Okay, well it is joyous because it is my 20th birthday. Yay! I celebrated it with my sister and my brother-in-law at Lagoon. Lagoon is a rollarcoaster park type thing. I had such a great time with them, but about halfway through, we were standing in line to take the Sky Lift across the park, and I felt an aura. I knew it was a seizure coming on, but I was hoping I would be able to cover it up, making it less noticeable. That did not happen.
You see, there is a difference between how I feel in a seizure, and what it looks like. People who know I have seizures often tell me that if they didn't know I had seizures, they would never had known I had one. See, it is hard for me to believe because when I have them, they feel noticeable. Let me tell you about Simple Partial seizures.
Simple Partial seizures are where only a small portion of the brain's neurons are freaking out, therefore, causing a seizure. Unlike Grand Mal seizures, they do not all look the same for everyone. For me, I clench my left fist, opening and closing it. I stare off into space, my eyes glazed. Often times my eye starts twitching. That might not seem like a big deal, but it is to the person having the seizure. Other people with Simple Partial seizures may have it different. There are various movements someone could make.
So as I was saying, I was standing in line with my sister and her husband, and I started having a Simple Partial seizure. My sister asked me if I was okay, not realizing I was having a seizure. My brother-in-law moved his hand back and forth in front of my face, asking if I was okay. I told them it was a seizure, and that it was okay. The thing is, even though I was perfectly fine, a persons reaction is to ask a bunch of times if I am okay. It used to bother me because people would act like I had no idea how I felt, and that I really wasn't okay. I no longer get upset over it because no matter what, people are going to say that. We got onto the Sky Lift, and my cluster of seizures began. With me, I don't just have one seizure. I have a cluster, which means about four or five. They hurt my head after a while, and I get really nauseated. It didn't help that I had just drank tons of soda, and had air in my stomach. I felt so stupid because I kept having them next to my brother-in-law, and it would get awkward because of the silence. He tried to keep the conversation going, but what is someone supposed to say when someone is having a seizure? After we got off at the other side of the park, I told my sister about the seizures I had had. She was kind and asked if I wanted to wait to go on rides, but being me, I didn't want to wait. It was okay.
Shortly after all of that, I was walking to a ride, and I realized that I had my VNS magnet with me! "Are you kidding me? I have my magnet? Why didn't I use it?" I asked myself outloud. I asked my sister if she wanted to swipe my magnet for me. She did, and she thought it was a little weird.
I was fine after the magnet was swiped. Later, my brother-in-law and I were standing in line to ride, "Cannibal", this amazing, crazy, scary ride, and I started having more seizures. He was buying stuff to eat, and so I was standing there by myself, trying to not be noticed by the people around me. These young boys kept turning to look at me. I never can get used to people staring. It makes me want to hide in a shell. When I have my seizures, I have to think about how it looks to the people around me, and I have to accomodate my actions. That doesn't make a whole lot of sense, but let me try to explain more. When I have seizures, I think about what people may think as they look at me. I tell myself to act natural, and I try to stand still and focus my eyes ahead, so it is not noticeable. It is exhausting trying to do that. It's hard to do so because it doesn't always work. This is not one of those things that I can control.
My birthday was so much fun. I loved being with my sister and her husband because they are amazing and so understanding. It's a good thing I was with family for that, because only a certain number of people know how to react to my seizures.
Epilepsy is a sensitive topic. It really embarrasses me, and whenever I tell people I am embarrassed, they don't listen to me. They just tell me to "not be". Gee, thanks. I will take your advice and put my feelings aside.
Overall, I had an amazing birthday!!
Saturday, September 19, 2015
Monday, September 7, 2015
Grand Mal Seizures
After being diagnosed with Epilepsy, I wasn't sure how to think or feel. I told my family that I was diagnosed, and they were concerned.
At my Neurologist appointment, I was put on a medication called "Keppra". I hoped that the medication would keep me from having any more seizures. It did, at least for a while. Six months later, I had another seizure.
I have had many Grand Mal seizures in my lifetime. They have occured at various places. I have had quite a few on the couch in my living room, one at my friend's house at a sleepover, one at my neighbor's house on their porch and one downstairs when I was watching a movie, all alone.
Let me tell you about those.
The Grand Mal seizures I have had on the couch were terrifying, but I was safe, being that it was a large couch, and there was always someone there with me. Though they were all at different times, they all felt the same. I knew that one was coming on because of the "aura" I felt (an aura is a strange feeling that comes before having usually any type of seizure). The aura came, and as I was laying on the couch, I twisted my body to the left and started to seize. Now. As soon as it started, that "out of body feeling" came, and it felt as if I was watching myself have that seizure. As if I was floating above my body. The echoing occured as usual. I heard my family surround me, saying things like, "Sara is having a seizure!!" It echoed through my mind over and over. I heard myself grunting and making noises. The seizures seemed like they did not last that long, but they last about 3-4 minutes. As I was coming out of the seizure, I couldn't talk. This is what happens when someone comes out of one. I couldn't talk for about five minutes. I heard myself breathing heavily out of my nose. My family tried to get me to say something, but my brain simply could not process the words. Something interesting with me is that unlike most people who have seizures, I can hear everything that is going on during the seizure. I know exactly what is going on and I hate that. I hate being able to know that I am in a seizure. It is the most horrifying feeling.
I have had a few Grand Mal seizures on my couch. Another one was at my friend's house while I was sleeping over there. I remember falling asleep to a movie while I was lying on the couch and I woke up to her parents and my parents staring at me. I was confused. My friend is Chinese, and they often drink hot water, as it tastes good, and it helps you feel better. Her mom tried to give me some, though I could not hold it because I just came out of the seizure. My parents wanted to take me home, but I was sad that I had to leave the sleepover early. I was scared to ever go back to my friend's house, because I knew she would be freaked out. The next time I went over there, her brother made a joke about me seizing. My friend said for him to shut up.
Another time was at my neighbor's house when we were having dinner there. I was sitting at a table, and I looked at my sister as I had that aura. I fell out of my chair, and I woke up to my Dad scratching my arm, because I love that. My parents, my sister and I were sitting together, and I remember thinking that we were in the front yard, and I was confused since the porch is in the backyard.
The last time is when I was downstairs on the ground, watching a movie by myself. I remember looking over, and my cats were sitting next to me. I went into the seizure, and when I came out of it, I couldn't talk, so I had to wait while I was terrified. Finally I was able to grunt, and I was so scared because my Mom was upstairs and I knew she wouldn't be able to hear me. Somehow she did, and she came down confused. Soon, she realized what had happened.
Seizures are the scariest thing to go through, and it is so hard to explain how they feel.
At my Neurologist appointment, I was put on a medication called "Keppra". I hoped that the medication would keep me from having any more seizures. It did, at least for a while. Six months later, I had another seizure.
I have had many Grand Mal seizures in my lifetime. They have occured at various places. I have had quite a few on the couch in my living room, one at my friend's house at a sleepover, one at my neighbor's house on their porch and one downstairs when I was watching a movie, all alone.
Let me tell you about those.
The Grand Mal seizures I have had on the couch were terrifying, but I was safe, being that it was a large couch, and there was always someone there with me. Though they were all at different times, they all felt the same. I knew that one was coming on because of the "aura" I felt (an aura is a strange feeling that comes before having usually any type of seizure). The aura came, and as I was laying on the couch, I twisted my body to the left and started to seize. Now. As soon as it started, that "out of body feeling" came, and it felt as if I was watching myself have that seizure. As if I was floating above my body. The echoing occured as usual. I heard my family surround me, saying things like, "Sara is having a seizure!!" It echoed through my mind over and over. I heard myself grunting and making noises. The seizures seemed like they did not last that long, but they last about 3-4 minutes. As I was coming out of the seizure, I couldn't talk. This is what happens when someone comes out of one. I couldn't talk for about five minutes. I heard myself breathing heavily out of my nose. My family tried to get me to say something, but my brain simply could not process the words. Something interesting with me is that unlike most people who have seizures, I can hear everything that is going on during the seizure. I know exactly what is going on and I hate that. I hate being able to know that I am in a seizure. It is the most horrifying feeling.
I have had a few Grand Mal seizures on my couch. Another one was at my friend's house while I was sleeping over there. I remember falling asleep to a movie while I was lying on the couch and I woke up to her parents and my parents staring at me. I was confused. My friend is Chinese, and they often drink hot water, as it tastes good, and it helps you feel better. Her mom tried to give me some, though I could not hold it because I just came out of the seizure. My parents wanted to take me home, but I was sad that I had to leave the sleepover early. I was scared to ever go back to my friend's house, because I knew she would be freaked out. The next time I went over there, her brother made a joke about me seizing. My friend said for him to shut up.
Another time was at my neighbor's house when we were having dinner there. I was sitting at a table, and I looked at my sister as I had that aura. I fell out of my chair, and I woke up to my Dad scratching my arm, because I love that. My parents, my sister and I were sitting together, and I remember thinking that we were in the front yard, and I was confused since the porch is in the backyard.
The last time is when I was downstairs on the ground, watching a movie by myself. I remember looking over, and my cats were sitting next to me. I went into the seizure, and when I came out of it, I couldn't talk, so I had to wait while I was terrified. Finally I was able to grunt, and I was so scared because my Mom was upstairs and I knew she wouldn't be able to hear me. Somehow she did, and she came down confused. Soon, she realized what had happened.
Seizures are the scariest thing to go through, and it is so hard to explain how they feel.
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