Long time no...write? I've been busy, you could say. Okay, not really. Life has been hard for the past two months?
For starters, depression and anxiety are not my friends. They have gotten bad over the past months and it has got to the point where it is hard for me to even leave my apartment. So, that has been difficult. When I go back to the United States, I'm hoping to change my anti-depression medication from Zoloft to something that actually works. It worked for a while, but when I got to China, it basically stopped working. Now, I am not sure if that is because of the stress that I have had here, but that should not matter. The medication should help no matter what situation I am in.
Epilepsy. Same same. Well, I have definitely had more seizures while in China than usual. The norm for my seizures is having one cluster of simple-partials a month, around "that time". However, I have been confused as to why I have had more, at different times. I have figured out why. Some of you may know that one of the many possible triggers for seizures is stress and lack of sleep. It's no question that I have had both of those. In general, I get stressed out fairly easily. Being in China, though I love it, has given me some stressors. That includes being away from my life as I know it. It has been on and off, but in general, I have missed quite a bit. One of those things is the piano. It has been almost four months since I have played those keys and I am missing it a lot.
Anyways, my seizures are the same. Same look, same type. They are just more frequent. It's been frustrating. When I have seizures, I get bad headaches. They last for hours and it isn't particularly enjoyable. It's hard enough to have clusters once a month, but now that I've had seizures more than usual, it seems like I always have a headache. I have been sleeping a lot because of it, and it feels like I never get enough sleep. When I wake up and it is eleven or twelve, I feel exhausted. It feels like I have not slept in days. That is another thing that people with epilepsy have to deal with. 8-9 hours of sleep is a good amount for adults. However, people with epilepsy may sleep that long, but it feels like 4-5 hours of sleep. So, you can imagine how that feels.
I have a week left here in China. The 15th is going to be a very long day, with the lovely time change. Figuring out my medication with the time change has been extremely difficult. I think I have finally figured out how to go about it, which requires me having to skip a dose. Hooray!
Wednesday, December 7, 2016
Wednesday, October 19, 2016
China With Depression/Anxiety
Living in China 12 years ago, I expected this time to be a similar experience, though I am much older. I have seen things in a whole new perspective, which has been interesting. Memories flood back to me as I travel to the various places I have long since been to. My love for China has grown tremendously, if even possible. However, despite all this, it hasn't been as easy as I thought it would be.
On the flight from Seattle to Shanghai, I got sick towards the end. I had been napping and I woke up sick to my stomach. The rest of that night was awful. I slept on some chairs as we were waiting for our flight from Shanghai to Nanjing. My stomach wasn't happy. Luckily, I was able to keep what was left in my stomach down. However, there was a bus that took us from the Shanghai airport to the plane, and let me tell you, it was not the smoothest of rides. On the plane, I put my head in my mom's lap, which enabled me to sleep for the hour long trip.
As we got into the van that would take me and my parents to the hotel, I got upset. However, this time my stomach was not the culprit. 'Twas my mind. My anxiety decided to show its ugly face and give me a present: an anxiety attack! Hooray! That hour long drive from the Nanjing airport to our hotel seemed like an eternity. I don't know if any of you are familiar with it, but anxiety attacks are not the most lovely of things. My breathing got faster, and I couldn't get enough air. I had to pretend nothing was wrong; no suspicion. As it continued, I got out my phone, opened a new text message and typed a quick note to my mom. Something along the lines of, "I am having an anxiety attack. I can't breathe." I passed the phone to my mom. However, she told me she couldn't read it because she didn't have her glasses on. So, that was the end of that. I had no choice but to wait until we got to our hotel to let my parents know what happened. When we finally arrived, I did just that. They apologized and we went inside to check in. My mom and I stood at the desk while my dad spoke to the desk man in Chinese. After a while of waiting, we were able to make it to our room, unpack a little, and wait for sleep to take us away. No need to worry about jet lag; we were exhausted.
For the next week, I was okay. I had a little bit of culture shock, but not much. Just me not wanting to go anywhere. I wanted to stay in the hotel room and sleep and that is mostly what I did. Meanwhile, my parents were apartment hunting. I didn't care where we lived; I was too tired. I looked at a couple pictures my mom took of a possible place to live. As the week passed, my dad got frustrated that we had not found a place to live in within our budget. I, too, was a little upset. Our hotel was lovely, but I got tired of staying there. Our real estate agent was funny, though. He and another guy would take my parents apartment hunting on the back of their motos (motor scooters). For the last few times, I was also able to come as we switched from moto to moto. There were about four people in total who would drive us around. The first time I got on the back of one, we drove about three hundred feet to the next traffic light and a cop stopped us. He told us the guy couldn't have another person on the bike. It was ridiculous because everyone in the entire city has more than one person on their motos! Sometimes three! My driver tried to bribe the policeman with money. Something else I bet the policeman was thinking, was that it was strange to have a man with a blond haired young foreign girl riding on the black of his bike, down the street. As a result, I had to wait for another guy to come pick me up, once the policeman was gone. That was a glorious night.
For the next week, I was okay. I had a little bit of culture shock, but not much. Just me not wanting to go anywhere. I wanted to stay in the hotel room and sleep and that is mostly what I did. Meanwhile, my parents were apartment hunting. I didn't care where we lived; I was too tired. I looked at a couple pictures my mom took of a possible place to live. As the week passed, my dad got frustrated that we had not found a place to live in within our budget. I, too, was a little upset. Our hotel was lovely, but I got tired of staying there. Our real estate agent was funny, though. He and another guy would take my parents apartment hunting on the back of their motos (motor scooters). For the last few times, I was also able to come as we switched from moto to moto. There were about four people in total who would drive us around. The first time I got on the back of one, we drove about three hundred feet to the next traffic light and a cop stopped us. He told us the guy couldn't have another person on the bike. It was ridiculous because everyone in the entire city has more than one person on their motos! Sometimes three! My driver tried to bribe the policeman with money. Something else I bet the policeman was thinking, was that it was strange to have a man with a blond haired young foreign girl riding on the black of his bike, down the street. As a result, I had to wait for another guy to come pick me up, once the policeman was gone. That was a glorious night.
Soon after, we were able to FINALLY get an apartment. It had been one that my parents had looked at before, but the price they were asking for was too high. The people decided to lower it, to my parents excitement. It was nice to finally have a place to live in. It took me about a week to get a bed. I had to use a hard, thin mattress type thing for a couple days, on a bed frame. The "mattress" was too big for the bed frame, leaving me with only half the bed to sleep on, unless I wanted to fall off. Our real estate agent was finding mattresses from who knows where, but they were all too big! Eventually he found one, who knows where. I didn't care; I finally had a bed! Chinese mattresses are known for being rock hard, but this mattress is pretty darn soft. I quite enjoy it.
All of the students, including me and my mom, started classes around that time. It was a terrifying time for me. I was anxious and didn't want to go. I had the thought in my head that I would be the worst one in the class and not know any Chinese compared to everyone else. However, everything was just fine. The first day, my mom and I were trying to figure out which class we wanted to be in. We started out in a beginner class, which was far too easy for us. I have taken Chinese before. It was years ago, an intensive Chinese language camp, two years in a row. We got up, and decided to try a different class. I will tell you. That was NOT easy. The next day, we decided to go back to the beginner class. It has been the perfect review for me. In the past two years, my mom has taken two Chinese classes, so she is enjoying it.
I've been traveling all over the place. I've been to Beijing, Xi'an, and all the places in those cities. The Summer Palace, The Forbidden City, The Great Wall, so many. I have enjoyed every minute of it, though I've had some hard times. I've had some breakdowns from stress and anxiety. I've found myself hating everything: China, people, food, etc. That is a part of culture shock, I guess.
Lately I have been sick. My immune system is not very good, so I assumed it was just something small, and would leave soon after. However, that is not what happened. The first couple days I threw up, due to an upset stomach. The next week was filled with an upset stomach and many trips to the bathroom. I could eat hardly anything because my stomach would get upset and I would end up in the bathroom. Because of that, I was quite weak, and I was more tired than usual. I had to remember to drink a lot and try to eat without running to the bathroom ten minutes later. Fortunately, for some reason, my stomach would tolerate peanut butter and banana sandwiches. I didn't complain, though. I would find myself eating two or three a day. What was frustrating was that I would be unbelievably hungry and I wasn't able to eat anything but that. Thanks to a friend, we were finally able to make something that didn't hurt my stomach. It was over-cooked rice, mashed up bananas, vanilla and raisins. It is quite delicious. My stomach is still sensitive, but it is much better.
Lately I have been sick. My immune system is not very good, so I assumed it was just something small, and would leave soon after. However, that is not what happened. The first couple days I threw up, due to an upset stomach. The next week was filled with an upset stomach and many trips to the bathroom. I could eat hardly anything because my stomach would get upset and I would end up in the bathroom. Because of that, I was quite weak, and I was more tired than usual. I had to remember to drink a lot and try to eat without running to the bathroom ten minutes later. Fortunately, for some reason, my stomach would tolerate peanut butter and banana sandwiches. I didn't complain, though. I would find myself eating two or three a day. What was frustrating was that I would be unbelievably hungry and I wasn't able to eat anything but that. Thanks to a friend, we were finally able to make something that didn't hurt my stomach. It was over-cooked rice, mashed up bananas, vanilla and raisins. It is quite delicious. My stomach is still sensitive, but it is much better.
Lately I have been really depressed and my anxiety is extremely high. Some of you may have depression and know what I am talking about. Depression is something that doesn't just "go away", nor anxiety. I've had experiences when I am having a hard time and people ask me what is wrong. I tell them I'm a little anxious and their answer is, "Well don't be". No really? I didn't know that! Okay. I'm not trying to be rude, but that is really frustrating when people do that. Same goes for depression. Depression isn't just "being sad". There are levels. Some people have a little bit. Some have it high enough that it can be dangerous. It's not something people should make fun of. You hear people say, "Ugh they are acting really bipolar". That gets to me, because I know people who suffer from bipolar. So! A little bit of what depression feels like is: feeling alone. It's as if a dark cloud has taken a spot above your head, raining down upon you. It gives you thoughts of pain. Mental pain. It feels like nothing will get better. "Nobody likes me", is an example of something you could think of. "I'm a pain in the rear end". So, I've been depressed. It's something I deal with, but it's showing itself quite a bit right now. It's been hard for me to get out of bed every morning. On days off, I tend to stay in bed till early afternoon. It's been hard for me to get involved, and eat the food here. I love Chinese food, but lately it hasn't been appetizing to me. I have found myself going to the Times Market, which is a store meant for people like me, who love American food. It's not cheap because they have to ship it all to China, but some of it is worth it. I buy chips and salsa there. Just last night I bought Andes mints, jalapeño baked chips and Dove white chocolate. It was amazing. I also have a bunch of the variety pack of miniature chocolate bars. You know, like Mr. Goodbars, Krackel, Hershey's, Hershey's dark chocolate, and I think that's it. It has been nice to have.
Anyways, I'm feeling better health wise. I am trying to get better mentally, but it's been difficult. I've gotten out of the apartment for class which has been good because I have some good friends in my classes. My seizures haven't arrived yet. Gotta wait a while. I've noticed that my VNS hasn't been bothering me as much. Actually, not at all. I hardly notice it anymore. When it goes off while I am talking, I can barely hear any voice change. It's made me happy.
Thanks for reading this LONG post.
Anyways, I'm feeling better health wise. I am trying to get better mentally, but it's been difficult. I've gotten out of the apartment for class which has been good because I have some good friends in my classes. My seizures haven't arrived yet. Gotta wait a while. I've noticed that my VNS hasn't been bothering me as much. Actually, not at all. I hardly notice it anymore. When it goes off while I am talking, I can barely hear any voice change. It's made me happy.
Thanks for reading this LONG post.
Tuesday, October 4, 2016
Forever And A Day.
Helloooooooo everybody! It has been so long and for that I am sorry. A lot has happened since July, so I will try to remember everything.
I was finally able to get in to see my neurologist. We talked about how I had been having an increase in seizures and wasn't sure why. It has been clear that my cluster of seizures comes around the same time every month, which is right before my menstrual cycle. It lasts about a day. I have discussed that issue a couple times with my neurologist and each time she says there isn't much you can do. Some women have tried different things, which never work. This last appointment she suggested something new: get a prescription for 100mg tablets of Lamictal. I would take them the day before I started my period and the rest of that week. Of course, I had to have my levels checked first, being that it is dangerous to have my Lamictal levels too high and could cause liver damage. So far, I have used the 100mg pills but I haven't thought much about it.
On August 25th, I left the country and traveled to China. It's a study abroad for my dad's work and my mom and I followed along to take some Chinese classes at the university here. It is my second time here in China, the first being in 2004. I have a whole new perspective on things because I am older now. Also, it has been great being able to get to know the students that are here for study abroad. I'm going to be here until December, so I will have been here for four months.
Okay. I consider China to be my second home. I love everything about it. The people, the language, the culture. However, culture shock has hit me hard on and off. Sometimes I wake up hating everything about China. My day is followed by me complaining about everything and hating everyone. Other times I will be just fine and half way through the day something sparks. For me, when culture shock hits I go into a deep depression, never wanting to leave my room, let alone the apartment. It usually lasts a day and goes away.
A few weeks ago I traveled to Beijing with everyone and my monthly cluster of seizures graced me with its presence. I had to miss some things and stay at the hotel. When they seemed to have stopped, I decided to walk to the store with a friend. On the way there and back I had seizures non-stop. Luckily, I was able to hide them from my friend. She knew I had seizures, but I much preferred to not show them if I could help it. Unfortunately, on the way back to the hotel, she noticed something was wrong. I told her a second after the seizures stopped, that I was sorry. I don't know why I apologized, but she said it was just fine.
My VNS has been lovely. It isn't as noticeable for me as before. Riding my bike is when I do notice it. It will sometimes show itself causing my breathing to get heavier, but that rarely happens. It could be because I am getting in shape. Who knows?
It's been hard for me to get on my blog because of culture shock and also my classes. However. I will try to write once a week at least.
I was finally able to get in to see my neurologist. We talked about how I had been having an increase in seizures and wasn't sure why. It has been clear that my cluster of seizures comes around the same time every month, which is right before my menstrual cycle. It lasts about a day. I have discussed that issue a couple times with my neurologist and each time she says there isn't much you can do. Some women have tried different things, which never work. This last appointment she suggested something new: get a prescription for 100mg tablets of Lamictal. I would take them the day before I started my period and the rest of that week. Of course, I had to have my levels checked first, being that it is dangerous to have my Lamictal levels too high and could cause liver damage. So far, I have used the 100mg pills but I haven't thought much about it.
On August 25th, I left the country and traveled to China. It's a study abroad for my dad's work and my mom and I followed along to take some Chinese classes at the university here. It is my second time here in China, the first being in 2004. I have a whole new perspective on things because I am older now. Also, it has been great being able to get to know the students that are here for study abroad. I'm going to be here until December, so I will have been here for four months.
Okay. I consider China to be my second home. I love everything about it. The people, the language, the culture. However, culture shock has hit me hard on and off. Sometimes I wake up hating everything about China. My day is followed by me complaining about everything and hating everyone. Other times I will be just fine and half way through the day something sparks. For me, when culture shock hits I go into a deep depression, never wanting to leave my room, let alone the apartment. It usually lasts a day and goes away.
A few weeks ago I traveled to Beijing with everyone and my monthly cluster of seizures graced me with its presence. I had to miss some things and stay at the hotel. When they seemed to have stopped, I decided to walk to the store with a friend. On the way there and back I had seizures non-stop. Luckily, I was able to hide them from my friend. She knew I had seizures, but I much preferred to not show them if I could help it. Unfortunately, on the way back to the hotel, she noticed something was wrong. I told her a second after the seizures stopped, that I was sorry. I don't know why I apologized, but she said it was just fine.
My VNS has been lovely. It isn't as noticeable for me as before. Riding my bike is when I do notice it. It will sometimes show itself causing my breathing to get heavier, but that rarely happens. It could be because I am getting in shape. Who knows?
It's been hard for me to get on my blog because of culture shock and also my classes. However. I will try to write once a week at least.
Monday, July 18, 2016
Why??
So I keep telling you all that I will write on here more often. Unfortunately, that is not what has been happening.
In my previous post, I wrote about how I have been feeling more confident and how my epilepsy doesn't bother me as much as it used to. Well, let's just say that I don't exactly feel that way anymore. Things have not been the easiest for me, lately.
Where to begin... well for starters, I was supposed to go in for an appointment with my neurologist last month. It was just a routine checkup with my VNS and everything. I was not feeling well that morning, so I called and asked if I could cancel it. So, that was taken care of. However, I realized shortly after I got off the phone, that I should suck it up and go to the appointment anyways. I called them back five minutes later and they told me that someone else had already taken my appointment! I know it was my fault, but it still infuriated me. They told me they didn't have any openings until September, otherwise they could put me on the wait list, in case someone cancelled their appointment. That was my only choice being that I will be out of the country from August to December. So far, I have not gotten any phone calls from them.
Over the past month, I've noticed an increase in my seizures. Normally, I have my small cluster of Simple-Partial seizures while I am on my period once a month and it has been that way for a long time now. Like I said though, there has been an increase of seizures. Instead of getting them once a month on my period, I have been getting them about every two weeks. That is how it was before I got my VNS. Last night as I was trying to fall asleep, I felt a seizure coming. I was a bit confused, because I don't start my period for another week. However, this was not one of my usual Simple-Partial seizures, where I simply stare off into space. But, it wasn't quite a Complex-Partial either, which is what I used to have years ago, where I would twist my body and freeze. It was in-between and it freaked me out. My head started killing me and when I finally fell asleep, it didn't last for long. I woke up 15+ times last night. Today I have been slugging around, just in my own world. I really need to carry my VNS magnet with me everywhere I go. Last night, I should have used it during those seizures, but I didn't think about it.
I am so frustrated with everything. I don't understand what is happening and why my seizures have increased. I haven't changed anything. Lately, I have been attempting to eat healthier. In the past few days, I have made smoothies and I love them. Today I made one that had: strawberries, blueberries, peaches, an apricot, spinach, and almond milk. I know what some of you are thinking, "Spinach in a smoothie? Yuck." Yeah, that is what I used to think. But the thing is, you don't taste the spinach. And, it is extremely healthy for you. Try it! I think you would love it.
In my previous post, I wrote about how I have been feeling more confident and how my epilepsy doesn't bother me as much as it used to. Well, let's just say that I don't exactly feel that way anymore. Things have not been the easiest for me, lately.
Where to begin... well for starters, I was supposed to go in for an appointment with my neurologist last month. It was just a routine checkup with my VNS and everything. I was not feeling well that morning, so I called and asked if I could cancel it. So, that was taken care of. However, I realized shortly after I got off the phone, that I should suck it up and go to the appointment anyways. I called them back five minutes later and they told me that someone else had already taken my appointment! I know it was my fault, but it still infuriated me. They told me they didn't have any openings until September, otherwise they could put me on the wait list, in case someone cancelled their appointment. That was my only choice being that I will be out of the country from August to December. So far, I have not gotten any phone calls from them.
Over the past month, I've noticed an increase in my seizures. Normally, I have my small cluster of Simple-Partial seizures while I am on my period once a month and it has been that way for a long time now. Like I said though, there has been an increase of seizures. Instead of getting them once a month on my period, I have been getting them about every two weeks. That is how it was before I got my VNS. Last night as I was trying to fall asleep, I felt a seizure coming. I was a bit confused, because I don't start my period for another week. However, this was not one of my usual Simple-Partial seizures, where I simply stare off into space. But, it wasn't quite a Complex-Partial either, which is what I used to have years ago, where I would twist my body and freeze. It was in-between and it freaked me out. My head started killing me and when I finally fell asleep, it didn't last for long. I woke up 15+ times last night. Today I have been slugging around, just in my own world. I really need to carry my VNS magnet with me everywhere I go. Last night, I should have used it during those seizures, but I didn't think about it.
I am so frustrated with everything. I don't understand what is happening and why my seizures have increased. I haven't changed anything. Lately, I have been attempting to eat healthier. In the past few days, I have made smoothies and I love them. Today I made one that had: strawberries, blueberries, peaches, an apricot, spinach, and almond milk. I know what some of you are thinking, "Spinach in a smoothie? Yuck." Yeah, that is what I used to think. But the thing is, you don't taste the spinach. And, it is extremely healthy for you. Try it! I think you would love it.
Friday, May 27, 2016
Pondering
Lately I have been thinking about my epilepsy and life in general. I've had epilepsy for almost seven years, but it seems like a lifetime. In that time, I have grown and changed a lot and it's been for the better. The lessons I have learned are not all big lessons, either. A lot of them are small.
The thing is, I was so confident before I was diagnosed with epilepsy. As confident as an 8th grader can be, anyways. I loved my friends, school was great; life was good! It's funny how one thing can change your life completely, though. One second you are perfectly healthy, the next second you are having seizures. One day. Seven words from the neurologist. "Two or more seizures is technically epilepsy." Seven words that changed my life. That one seizure in 8th grade was not just a one time thing, as my family and I had hoped. It was the beginning of a new chapter. And really, a new me.
After being diagnosed with epilepsy, I hid it. I didn't tell anyone that I didn't have to. My family knew and that was it. None of my friends at school knew, but I did tell my best friend at the time. I didn't go into details. I told her I had seizures. That was it. And I was not about to tell anyone else I had epilepsy. I'm a freak! Those words were always in my mind.
Rarely was there a time I didn't have a crush on someone. Though at that time, I hoped and prayed that I wouldn't have a seizure in front of them. The summer between 8th and 9th grade (high school) I met quite a few boys that I began to like. It was scary to me because I was convinced I was a freak and I mean I was, right? I had seizures. That's not normal, right?
When I started high school, I got a new group of friends, which meant I probably should have told them I had seizures. Yeah, the only problem was.........that was never going to happen on my watch. I was constantly trying to convince myself that I would be fine and that I didn't need to tell anyone about my epilepsy. Looking back, I am glad I didn't tell them because I broke down every time I had a seizure and they would just stare at me. I did tell one of my friends and they did exactly what I thought they would. They looked at me and said, "okay". Though, when I did have a seizure in front of them, my medication was making sure I only had Complex Partials. My "friend" looked at me like I was an alien. She walked away while I was still in the seizure.
For the first year of being diagnosed with epilepsy, I cried everytime I had a seizure in front of someone. It was mostly hidden, but it happened. It stopped after about a year and though I would still get upset and embarrassed BEYOND BELIEF, I didn't cry. When I have seizures in front of people now, I get embarrassed, but I move on fairly quickly.
Something I have learned over the years is that life doesn't always go the way you want it to. Life can change in the blink of an eye. Never would I have thought I would start having seizures. I didn't think that I would wake up the next morning and have one in the bathroom. No matter how many times I get angry about it. No matter how many times I complain. It's not going to go away. I have to take what I have and go along with it. Yes, I thought my life would be normal. I thought I would be like everyone else, and get my license at 16 years old. I thought I would be able to get through a year of college without having crippling side effects that made me not be able to do what I was there to do: go to class, let alone, take more than two classes.
No matter what you have. If it is something physical or mental. It doesn't matter what it is. Our trials and hardships are equal. Recently, I've felt like I have been complaining too much about my condition, when there are other people out there who have even worse conditions. There are people that can't walk, talk, or do anything by themselves. However, I've learned that it doesn't make it any less of a hardship for me. It is still real. It's as real as someone elses disability. I have seizures. I can't do anything to stop them. I'm on three seizure medications and two anxiety and insomnia medications. It isn't my ideal choice, but it's what I have got to deal with.
No doubt I have learned a lot of things from my journey with epilepsy so far. However, a big thing I have learned is to not be afraid. I cannot even begin to explain how scary it is to have a seizure. It doesn't matter what size or type. Complex Partial, Simple Partial, Absense, Grand Mal; it's the same. All terrifying beyond explaination. I don't have a choice, though. I have my medications which control my seizures enough to where I only have them once a month in a cluster. I hate it, but it's what I have to deal with, and it's my life.
I have noticed that I've gotten a lot more confident lately. I am thinking it is because I am learning that I am not inferior to anyone else. I have my trials and hardships. I have epilepsy, but that doesn't make me a freak. I've gotten to the point where I can tell people I have epilepsy without hesitation. I don't need to worry about what other people say and think. Really. Who cares what others think? They can call you whatever they want. Just....
Please everyone. Don't let the world get you down.
The thing is, I was so confident before I was diagnosed with epilepsy. As confident as an 8th grader can be, anyways. I loved my friends, school was great; life was good! It's funny how one thing can change your life completely, though. One second you are perfectly healthy, the next second you are having seizures. One day. Seven words from the neurologist. "Two or more seizures is technically epilepsy." Seven words that changed my life. That one seizure in 8th grade was not just a one time thing, as my family and I had hoped. It was the beginning of a new chapter. And really, a new me.
After being diagnosed with epilepsy, I hid it. I didn't tell anyone that I didn't have to. My family knew and that was it. None of my friends at school knew, but I did tell my best friend at the time. I didn't go into details. I told her I had seizures. That was it. And I was not about to tell anyone else I had epilepsy. I'm a freak! Those words were always in my mind.
Rarely was there a time I didn't have a crush on someone. Though at that time, I hoped and prayed that I wouldn't have a seizure in front of them. The summer between 8th and 9th grade (high school) I met quite a few boys that I began to like. It was scary to me because I was convinced I was a freak and I mean I was, right? I had seizures. That's not normal, right?
When I started high school, I got a new group of friends, which meant I probably should have told them I had seizures. Yeah, the only problem was.........that was never going to happen on my watch. I was constantly trying to convince myself that I would be fine and that I didn't need to tell anyone about my epilepsy. Looking back, I am glad I didn't tell them because I broke down every time I had a seizure and they would just stare at me. I did tell one of my friends and they did exactly what I thought they would. They looked at me and said, "okay". Though, when I did have a seizure in front of them, my medication was making sure I only had Complex Partials. My "friend" looked at me like I was an alien. She walked away while I was still in the seizure.
For the first year of being diagnosed with epilepsy, I cried everytime I had a seizure in front of someone. It was mostly hidden, but it happened. It stopped after about a year and though I would still get upset and embarrassed BEYOND BELIEF, I didn't cry. When I have seizures in front of people now, I get embarrassed, but I move on fairly quickly.
Something I have learned over the years is that life doesn't always go the way you want it to. Life can change in the blink of an eye. Never would I have thought I would start having seizures. I didn't think that I would wake up the next morning and have one in the bathroom. No matter how many times I get angry about it. No matter how many times I complain. It's not going to go away. I have to take what I have and go along with it. Yes, I thought my life would be normal. I thought I would be like everyone else, and get my license at 16 years old. I thought I would be able to get through a year of college without having crippling side effects that made me not be able to do what I was there to do: go to class, let alone, take more than two classes.
No matter what you have. If it is something physical or mental. It doesn't matter what it is. Our trials and hardships are equal. Recently, I've felt like I have been complaining too much about my condition, when there are other people out there who have even worse conditions. There are people that can't walk, talk, or do anything by themselves. However, I've learned that it doesn't make it any less of a hardship for me. It is still real. It's as real as someone elses disability. I have seizures. I can't do anything to stop them. I'm on three seizure medications and two anxiety and insomnia medications. It isn't my ideal choice, but it's what I have got to deal with.
No doubt I have learned a lot of things from my journey with epilepsy so far. However, a big thing I have learned is to not be afraid. I cannot even begin to explain how scary it is to have a seizure. It doesn't matter what size or type. Complex Partial, Simple Partial, Absense, Grand Mal; it's the same. All terrifying beyond explaination. I don't have a choice, though. I have my medications which control my seizures enough to where I only have them once a month in a cluster. I hate it, but it's what I have to deal with, and it's my life.
I have noticed that I've gotten a lot more confident lately. I am thinking it is because I am learning that I am not inferior to anyone else. I have my trials and hardships. I have epilepsy, but that doesn't make me a freak. I've gotten to the point where I can tell people I have epilepsy without hesitation. I don't need to worry about what other people say and think. Really. Who cares what others think? They can call you whatever they want. Just....
Please everyone. Don't let the world get you down.
Saturday, May 7, 2016
Scary
Hello everyone.
Today was a fun day. My family celebrated my nephew's first birthday.
However, this last half hour was terrifying for me. Before my mom left to run some errands, she asked me to mow the lawn while she was gone. Thank goodness she said only the front lawn, because this next part is scary, to say the least.
I went outside, got the lawnmower, and started to mow. Everything was fine. It was a couple minutes in that my VNS went off. I couldn't get a deep enough breath, but I kept going anyway. Three minutes later, it went off again. That time, I stopped the lawnmower, and waited the thirty seconds until it was done. However, it was beginning to scare me. I continued to mow the lawn, but when I was almost done, I collapsed in the grass. It was bad. I could not get any oxygen in my lungs. I tried taking deep breaths, but I probably only got a sliver of oxygen. As I waited for this to stop, I was terrified to get up and finish mowing. But I was almost done, so I finished.
My VNS went off as I was pushing the lawnmower to the backyard, and I hurriedly went into the house. One of my cats stared at me as I collapsed on the couch, heaving. After about five minutes of lying there, I got up, got two Izze drinks, and went to my room.
Breathing is automatic for us. Our brain tells our body to breathe, and it does. So, not being able to breathe really freaked me out. I haven't been this scared in a long time.
Today was a fun day. My family celebrated my nephew's first birthday.
However, this last half hour was terrifying for me. Before my mom left to run some errands, she asked me to mow the lawn while she was gone. Thank goodness she said only the front lawn, because this next part is scary, to say the least.
I went outside, got the lawnmower, and started to mow. Everything was fine. It was a couple minutes in that my VNS went off. I couldn't get a deep enough breath, but I kept going anyway. Three minutes later, it went off again. That time, I stopped the lawnmower, and waited the thirty seconds until it was done. However, it was beginning to scare me. I continued to mow the lawn, but when I was almost done, I collapsed in the grass. It was bad. I could not get any oxygen in my lungs. I tried taking deep breaths, but I probably only got a sliver of oxygen. As I waited for this to stop, I was terrified to get up and finish mowing. But I was almost done, so I finished.
My VNS went off as I was pushing the lawnmower to the backyard, and I hurriedly went into the house. One of my cats stared at me as I collapsed on the couch, heaving. After about five minutes of lying there, I got up, got two Izze drinks, and went to my room.
Breathing is automatic for us. Our brain tells our body to breathe, and it does. So, not being able to breathe really freaked me out. I haven't been this scared in a long time.
Wednesday, April 27, 2016
Rambling About...Things?
Uhm. So it's been forever. Seriously. Forever. I guess I could say a lot has happened. Nothing big, but still.
Life is mostly the same. No job. No license. The Epilepsy is still here and it's not going anywhere. It's kind-of one big circle of repetition.
I've been pretty down lately. There's a lot of factors that go into that and I bet you can guess one of them. That's right: Epilepsy. It doesn't help that I have anxiety and depression to go along with that. I've been so exhausted from life.
I calculated how many miligrams of medication I take a day and it disturbs me. I've done it before, but because I've had two more medications added to the three I already had, I figured it out again. So, after adding up all of my medications, I now take 5,050 mg. of medications a day. That does not include supplements.
In the morning I take Keppra XR and Zoloft and at night I take Oxtellar XR, Lamictal XR, and Trazodone. The Zoloft is for depression and anxiety, and the Trazedone is for insomnia. The supplements I take are: Fish Oil, Vitamin D3, Vitamin C, Magnisium, Vitamin K, and Folic Acid. The Folic Acid is especially important for me because the anti-convulsant medications I take drain the Folic Acid out of my body. Therefore, I must put it back in. Honestly, I get quite frustrated from having to put all of these medications inside my body.
On the side of taking my main medications and supplements, I also have Lorazepam which I take when I have seizure clusters. I always swipe my VNS magnet, but if I happen to have the Lorazepam, I take that also. Along with that, I occasionally take Zofran. It is for when I have nausea. I don't take that one too often.
I don't actually know what this post is supposed to be about. Maybe it's just a ramble post. I'm sure it won't make sense to me once I am well-rested again.
Life is mostly the same. No job. No license. The Epilepsy is still here and it's not going anywhere. It's kind-of one big circle of repetition.
I've been pretty down lately. There's a lot of factors that go into that and I bet you can guess one of them. That's right: Epilepsy. It doesn't help that I have anxiety and depression to go along with that. I've been so exhausted from life.
I calculated how many miligrams of medication I take a day and it disturbs me. I've done it before, but because I've had two more medications added to the three I already had, I figured it out again. So, after adding up all of my medications, I now take 5,050 mg. of medications a day. That does not include supplements.
In the morning I take Keppra XR and Zoloft and at night I take Oxtellar XR, Lamictal XR, and Trazodone. The Zoloft is for depression and anxiety, and the Trazedone is for insomnia. The supplements I take are: Fish Oil, Vitamin D3, Vitamin C, Magnisium, Vitamin K, and Folic Acid. The Folic Acid is especially important for me because the anti-convulsant medications I take drain the Folic Acid out of my body. Therefore, I must put it back in. Honestly, I get quite frustrated from having to put all of these medications inside my body.
On the side of taking my main medications and supplements, I also have Lorazepam which I take when I have seizure clusters. I always swipe my VNS magnet, but if I happen to have the Lorazepam, I take that also. Along with that, I occasionally take Zofran. It is for when I have nausea. I don't take that one too often.
I don't actually know what this post is supposed to be about. Maybe it's just a ramble post. I'm sure it won't make sense to me once I am well-rested again.
Saturday, March 26, 2016
Epilepsy Awareness Day!
Hellloooo everyone! Today is a grand day. It is Epilepsy Awareness Day! It's the day we are supposed to wear purple to support Epilepsy Awareness!
I have to remind my family every year that March 26th is the day we support the awareness of Epilepsy. It's not a holiday or anything, so that is okay. Today I woke up and put on a purple shirt I got from the Women's Expo years ago. It has some website written on it that I have never heard of, but it is purple, so I am wearing it. I also put on a necklace that my mom bought me a couple years ago. It says, "never never give up" and a bracelet she got me that has purple beads and a charm that is a purple ribbon. Really, only people with Epilepsy know about this day. That is just fine though, because I love having a day devoted to Epilepsy.
This morning when I told my father what day it was, he said, "Oh no, I'm not wearing any purple". He then went to his room and came back wearing a purple sweater.
Tomorrow is Easter and today my niece and baby nephew got to go out and find the candy the Easter Bunny left for them! That was fun. She and my baby nephew got a basket full of candy as well. The Easter Bunny thought of me too, and left me a basket. After the hunt, we all had breakfast. It was quite delicious.
This post is a little short, but I hope you all have a great Easter and Epilepsy Awareness Day!
I have to remind my family every year that March 26th is the day we support the awareness of Epilepsy. It's not a holiday or anything, so that is okay. Today I woke up and put on a purple shirt I got from the Women's Expo years ago. It has some website written on it that I have never heard of, but it is purple, so I am wearing it. I also put on a necklace that my mom bought me a couple years ago. It says, "never never give up" and a bracelet she got me that has purple beads and a charm that is a purple ribbon. Really, only people with Epilepsy know about this day. That is just fine though, because I love having a day devoted to Epilepsy.
This morning when I told my father what day it was, he said, "Oh no, I'm not wearing any purple". He then went to his room and came back wearing a purple sweater.
Tomorrow is Easter and today my niece and baby nephew got to go out and find the candy the Easter Bunny left for them! That was fun. She and my baby nephew got a basket full of candy as well. The Easter Bunny thought of me too, and left me a basket. After the hunt, we all had breakfast. It was quite delicious.
This post is a little short, but I hope you all have a great Easter and Epilepsy Awareness Day!
Friday, March 11, 2016
What Is Positive About This?
Having Epilepsy. Having seizures. How could anything positive come from that? Yeah... I'm not sure, but I'm pretty sure there is something. Let's see.....
I've always thought that Epilepsy was a negative thing. There's never been anything good that has come from it. I mean, I've had seizures for seven years and there's never been anything jolly that's come from it. Never been a day where after a seizure, I've jumped for joy. I've never said, "Whoopee!!! That was fun! Let's do it again!!" It's nothing to be happy about. But, I've been thinking about this topic for the past few days and I have realized that even though having Epilepsy isn't something to shout for joy about, it's changed my life completely in every way. That is obvious, right?
When I was younger, I was super shy. I would cry over everything. My mom couldn't drop me off at preschool most of the time because I would start bawling. I would have to get dropped off by my friend and her mom instead. For the first few years of elementary school, I would get so nervous to go to school that I would throw up on the walk there. I've just always been a shy person.
In the sixth grade I had made some great friends, so by the time I got into middle school, I was set. We had amazing times and I loved being with them. I was also pretty dang confident in the seventh grade. However, a couple months after the start of eighth grade, that changed completely. I had my first seizure and that threw away my confidence. My friends started to treat me different, so I learned to not tell anyone about my Epilepsy, unless I truly had to. When I got into high school, my Grand Mal seizures were under control. I then only had Complex-Partial seizures. I would have them in front of my new friends and I would either pretend I didn't have the seizure, or on rare occasions, I would tell them. Either way, I could tell they were freaked out.
Anyways, my self-esteem was nowhere to be found. I had a teeny bit, maybe a 2 out of 10. So that was fun.
It was really in my Junior year of high school when I learned some important things. I learned that I wasn't the only one with Epilepsy. I met a few people at my school who also had it. Also, my sister had found a website that was all about Epilepsy and I was able to chat with others who had it. I learned that even though I suffered from Epilepsy, some people had it worse. I was in a class where I helped some students with disabilities. Some of them had Down Syndrome. Some had Cerebral Palsy. It really opened my eyes because even though I suffered like them, I didn't have it as extreme as their conditions.
Now that I suffer from Epilepsy, I empathize with others who have it as well. Whenever I see someone have a seizure, I know how they are feeling. I know how scared they are. Watching a seizure, I am not nervous like others are. However, before I started having seizures, I was terrified of seeing them.
I've mentioned this before, but my Junior year was when I became best friends with my best friend. That isn't something that has to do with my Epilepsy, but knowing that she accepts me for who I am and understands that I have Epilepsy, that is priceless. She doesn't get scared when I have a seizure in front of her. She simply waits for it to be over and because I have clusters of seizures, asks me if I am okay. I am so lucky to have found her.
It's interesting because for the first few years of having Epilepsy, I did not think my family understood it at all. I thought that since they did not have seizures, they didn't understand what I was going through. It made me upset at times when they would try to help me feel better. I was about 17 when I realized something. Just because no one in my family has seizures, does not mean they don't know I'm suffering. They have gone through hard times themselves. My family has their own health issues and though they are not the same as mine, they know what it feels like to have health problems. I know they love me and are always trying to help.
Something my dad told me really speaks to me. My mom and dad traveled to Cambodia in 2014 and my dad met a man who has a son with Epilepsy. Now. Cambodia is not like the United States. They do not have good health care and because of this, he is not able to get medications for his son. His son has to endure the seizures everyday. When my dad shared that with me, I could not believe how blessed the people of the United States really are. We have amazing doctors who can help us at any time. We are able to receive medications to help us get better. Though I have to take five medications everyday, three of which are anti-convulsants, I am grateful because if I did not have them, I would be having Grand Mal seizures everyday.
Another thing I am incredibly grateful for is my insurance company. Because of them, I am able to have these medications. If my family did not have insurance, we would not be able to afford my medications. I would not have the Extended Release of Trileptal (Oxtellar XR). I would still be suffering from double vision everyday. I am extremely grateful that my insurance finally accepted our appeal.
I guess there are some positive things that have come from having Epilepsy. I just had to look hard enough.
I've always thought that Epilepsy was a negative thing. There's never been anything good that has come from it. I mean, I've had seizures for seven years and there's never been anything jolly that's come from it. Never been a day where after a seizure, I've jumped for joy. I've never said, "Whoopee!!! That was fun! Let's do it again!!" It's nothing to be happy about. But, I've been thinking about this topic for the past few days and I have realized that even though having Epilepsy isn't something to shout for joy about, it's changed my life completely in every way. That is obvious, right?
When I was younger, I was super shy. I would cry over everything. My mom couldn't drop me off at preschool most of the time because I would start bawling. I would have to get dropped off by my friend and her mom instead. For the first few years of elementary school, I would get so nervous to go to school that I would throw up on the walk there. I've just always been a shy person.
In the sixth grade I had made some great friends, so by the time I got into middle school, I was set. We had amazing times and I loved being with them. I was also pretty dang confident in the seventh grade. However, a couple months after the start of eighth grade, that changed completely. I had my first seizure and that threw away my confidence. My friends started to treat me different, so I learned to not tell anyone about my Epilepsy, unless I truly had to. When I got into high school, my Grand Mal seizures were under control. I then only had Complex-Partial seizures. I would have them in front of my new friends and I would either pretend I didn't have the seizure, or on rare occasions, I would tell them. Either way, I could tell they were freaked out.
Anyways, my self-esteem was nowhere to be found. I had a teeny bit, maybe a 2 out of 10. So that was fun.
It was really in my Junior year of high school when I learned some important things. I learned that I wasn't the only one with Epilepsy. I met a few people at my school who also had it. Also, my sister had found a website that was all about Epilepsy and I was able to chat with others who had it. I learned that even though I suffered from Epilepsy, some people had it worse. I was in a class where I helped some students with disabilities. Some of them had Down Syndrome. Some had Cerebral Palsy. It really opened my eyes because even though I suffered like them, I didn't have it as extreme as their conditions.
Now that I suffer from Epilepsy, I empathize with others who have it as well. Whenever I see someone have a seizure, I know how they are feeling. I know how scared they are. Watching a seizure, I am not nervous like others are. However, before I started having seizures, I was terrified of seeing them.
I've mentioned this before, but my Junior year was when I became best friends with my best friend. That isn't something that has to do with my Epilepsy, but knowing that she accepts me for who I am and understands that I have Epilepsy, that is priceless. She doesn't get scared when I have a seizure in front of her. She simply waits for it to be over and because I have clusters of seizures, asks me if I am okay. I am so lucky to have found her.
It's interesting because for the first few years of having Epilepsy, I did not think my family understood it at all. I thought that since they did not have seizures, they didn't understand what I was going through. It made me upset at times when they would try to help me feel better. I was about 17 when I realized something. Just because no one in my family has seizures, does not mean they don't know I'm suffering. They have gone through hard times themselves. My family has their own health issues and though they are not the same as mine, they know what it feels like to have health problems. I know they love me and are always trying to help.
Something my dad told me really speaks to me. My mom and dad traveled to Cambodia in 2014 and my dad met a man who has a son with Epilepsy. Now. Cambodia is not like the United States. They do not have good health care and because of this, he is not able to get medications for his son. His son has to endure the seizures everyday. When my dad shared that with me, I could not believe how blessed the people of the United States really are. We have amazing doctors who can help us at any time. We are able to receive medications to help us get better. Though I have to take five medications everyday, three of which are anti-convulsants, I am grateful because if I did not have them, I would be having Grand Mal seizures everyday.
Another thing I am incredibly grateful for is my insurance company. Because of them, I am able to have these medications. If my family did not have insurance, we would not be able to afford my medications. I would not have the Extended Release of Trileptal (Oxtellar XR). I would still be suffering from double vision everyday. I am extremely grateful that my insurance finally accepted our appeal.
I guess there are some positive things that have come from having Epilepsy. I just had to look hard enough.
Saturday, February 27, 2016
Handling Side Effects
When you think of medicine, you think of something that will make you feel better. You get it when you are temporarily sick and you also take it long term if you need to, just like me.
Obviously I take medications because if I do not, I will have seizures everyday.
Everybody has the freedom to choose what they want. I hate taking medications, so really, I could just say, "Nope. Not going to take them anymore". But, that would be a really stupid choice. From past experience, I know that if I forget one day of medications, I have a Grand Mal seizure. So, unless I want to go through that, I can't go off my medications.
In the past, I have told you all about my double vision experiences. That happened because I was taking Trileptal. The only time it went away was when I went on the Extended Release, "Oxtellar XR". That double vision was one of the worst things I've experienced. I never got out of bed because I couldn't see. I had to miss out on things that I would have really liked to have done. So, when my insurance finally approved our request, it was hallelujah for everyone.
Ever since I was a kid, I have had some tremors. My hands just shake sometimes. I have been noticing it more in the past year and I am starting to wonder if one of my medications is contributing to the tremors I already have. It could be one of the two new medications I started a few months ago: Trazodone or Zoloft.
When I was going to college in Idaho this past year, that was when the whole double vision thing was so bad. I already had zero friends. I was couped up in my bed till 1 pm. I felt so alone. No wait, I WAS so alone. I never thought the double vision would go away. My insurance was refusing to pay for the Oxtellar XR and we were not going to pay $1,000 a month for it. But when we kept pushing our insurance for it, it payed off.
Even though I am on Oxtellar XR now, I have learned that whenever I take my night medications at midnight or later, I wake up with double vision. It's happened ever since I started Trazodone and Zoloft a few months ago. But only if I take my night medications at midnight or later. I will tell you that it is so frustrating and tiring. I finally have the double vision under control and then if I take my night medications late, it happens in the morning. It feels like no matter how hard I try, it always goes downhill.
I've always felt so alone with my side effects. I've felt like nobody has ever had them as bad as I have.
What has kept me going is not one of those cliche inspirational quotes that people always say: "It's hope that keeps me going!" Yeah....NO. I just keep going because it's all I can do. I have to live with whatever side effects I have to experience. Having depression and anxiety in the mix has definitely not helped, but all I can say is that I have made it through everything that has been thrown at me.
Saturday, February 13, 2016
Auras
Sorry it's been a while. I have been really sick. But, here's a post for you all!
An aura is the feeling you get before you have a seizure. They feel different for everyone, but auras are pretty freaky.
I do not like the auras I have. There are several things that happen when I have an aura.
1. My stomach jumps. It feels like someone just scared me.
2. I get a throbbing headache.
3. I get nauseated.
I absolutely hate auras.
I am not sure about other people, but I almost feel like I am watching myself have the aura. If you read my third post, "Seeing It For The First Time", you'll remember that when I had my first seizure, I felt like I was dead. That I was outside of my body, watching myself. This is not as strong, but similar.
I wanted to let you all know that I opened an Etsy shop! You should all check it out and spread the word!
https://www.etsy.com/shop/EpilepsyGirl?ref=hdr_shop_menu
Wednesday, February 3, 2016
How To Properly React To Someone Who Has Seizures: Sara's Experience (Part 2)
I'm sure you are all wondering what you should and shouldn't do when you are around a person with Epilepsy.
Sometimes I am going to be talking about people with Epilepsy in general and sometimes something more specific to me.
Do's
1. Treat me like a robust, healthy human. Like someone with Diabetes. When you find out that someone has Diabetes, do you run away and never talk to them again? Yes, both Epilepsy and Diabetes require maintenance, but you don't have to be scared of it. I am not fragile.
2. I have been on dates where I have told them I have Epilepsy and they never call me again. People tend to draw back from things that make them uncomfortable and Epilepsy is one of those things. I understand what it is like to be uncomfortable by something, but if you understand what Epilepsy is, it becomes easier. So, ask the person with Epilepsy some questions! They will most likely be glad to explain their condition. Talking is key.
3. Do help continue the conversation as if I am not having the seizure. There is nothing worse than being alone in the seizure. If you ask a question while the seizure is happening, I will answer it after I come out of it.
Don'ts
1. Staring. DO NOT STARE! You might as well punch me in the stomach. That is how it feels. When people stare at me during seizures, it feels like I am some foreign object the astronauts brought back from space. Maybe a weird animal. Why stare anyway? Yes, Grand Mal Seizures are noticeable, so it is natural to stare. BUT. When it is simply a Complex-Partial Seizure or Simple Partial? There is absolutely NO need to stare. Just do something else! Continue watching TV, eating your snack, petting your cat, listening to music.... whatever you were doing! I'll be out of it soon enough.
2. Most importantly, DON'T forget that people with Epilepsy love gifts, specifically chocolate. ;)
On a more serious note, when someone is having a Grand Mal Seizure, be aware of these things:
Sometimes I am going to be talking about people with Epilepsy in general and sometimes something more specific to me.
Do's
1. Treat me like a robust, healthy human. Like someone with Diabetes. When you find out that someone has Diabetes, do you run away and never talk to them again? Yes, both Epilepsy and Diabetes require maintenance, but you don't have to be scared of it. I am not fragile.
2. I have been on dates where I have told them I have Epilepsy and they never call me again. People tend to draw back from things that make them uncomfortable and Epilepsy is one of those things. I understand what it is like to be uncomfortable by something, but if you understand what Epilepsy is, it becomes easier. So, ask the person with Epilepsy some questions! They will most likely be glad to explain their condition. Talking is key.
3. Do help continue the conversation as if I am not having the seizure. There is nothing worse than being alone in the seizure. If you ask a question while the seizure is happening, I will answer it after I come out of it.
Don'ts
1. Staring. DO NOT STARE! You might as well punch me in the stomach. That is how it feels. When people stare at me during seizures, it feels like I am some foreign object the astronauts brought back from space. Maybe a weird animal. Why stare anyway? Yes, Grand Mal Seizures are noticeable, so it is natural to stare. BUT. When it is simply a Complex-Partial Seizure or Simple Partial? There is absolutely NO need to stare. Just do something else! Continue watching TV, eating your snack, petting your cat, listening to music.... whatever you were doing! I'll be out of it soon enough.
2. Most importantly, DON'T forget that people with Epilepsy love gifts, specifically chocolate. ;)
On a more serious note, when someone is having a Grand Mal Seizure, be aware of these things:
- Do they have Epilepsy? Do you know them already? If you don't, check their wrist, neck, or ankle for medical bracelets. If there are no medical bracelets on them, call 911.
- Time the seizure. Even if you already know the person has seizures, make sure you time it. If it lasts longer than three minutes, call 911.
- DO NOT MOVE THE PERSON! Make sure the person is safe and not hitting their head on the floor. Use a pillow or your lap to protect them from banging their head on the hard ground. Slighty turn their head to make sure their tongue doesn't fall back in their mouth.
- DO NOT PUT ANYTHING IN THEIR MOUTH! Some people have the idea in their crazy minds to put a spoon in the person's mouth. NOPE! NEVER DO THIS! Their reasoning is that they want to keep the person's tongue down so they don't choke on it. But, as I previously said, keep the person's head slightly tilted to keep their tongue to the side.
- Things to expect. There are many things that can happen during the seizure. Sometimes the person throws up. Sometimes they soil themselves. Often times foam comes out of their mouth. There will be noises coming from them. Grunting, heavy breathing, etc. It is different for everyone.
- The aftermath. Even after the person has stopped shaking, they are still in the seizure. It takes about five minutes after the shaking is finished to completely come out of the seizure. It will take them a while to start talking. All energy is wiped out of them from the seizure, so let them rest. They will be out for hours.
My Epilepsy and Friends (Part 1)
Having Epilepsy is a huge trial. That's no secret.
(I have changed the names in this post for privacy reasons)
(I have changed the names in this post for privacy reasons)
Ever since all of us were kids, we have had friends at some point or another. Some of our friendships have lasted for years and some have lasted for as little as a day. Friends are great to have no matter how long it lasts.
When I was in preschool I had a best friend; JoJo. She moved away in Kindergarten without telling me. I found out she moved when I was riding my bike around my neighborhood with my cousin and we saw a "Sold" sign in my best friend's yard. I had no idea where she moved to. The next time I talked to her was when I saw her on Facebook when I was 17. So, that was sad for me.
The next friend I had was a girl who lived across the street from me; Kirstin. We were more of close friends than best friends and we had been since she moved in when I was five years old. That friendship lasted for ten years, simply because we lived across the street from each other. I loved playing with her and we had great imaginations. We would play for hours on end everyday.
When I turned eight, I made a new friend at a neighborhood party; Jennifer. We became instant friends and were best friends for nine years. We went everywhere together and though we got in fights a lot, we had great times.
In high school I made more friends, but they were just people I hung out with mostly at school.
When someone thinks of the word "friend", they think of someone who cares. Someone who is always there for you. Someone who won't judge you. Growing up, that is something I had always wanted. When you are a kid, friends come and go, so I didn't think about finding an amazing friend for life until I got older. But when I turned eight, I thought my then best friend (Jennifer) would be my best friend for life. I never would have guessed we would drift apart.
When I first started having seizures at the age of 13, I thought my friends would always be there for me and not judge me for having seizures. I knew they might feel nervous when they would see me have one, but I didn't think they would ever be scared of me. Boy, was I wrong.
When my friends found out I had seizures, they wouldn't hang out with me as much. When I would want to hang out, they would say they couldn't and when I would see them later that day, they would be hanging out with someone else. One time I remember well was when my best friend Jennifer and I were in my room and I had a Simple-Partial Seizure. I froze for about 15 seconds and when I came out of it, she looked absolutely horrified of me. Another time I remember specifically is when I was at school and one of my friends, Adrian, was standing next to me. Even though she knew I had seizures, she watched me like I was an alien.
Epilepsy has definitely made me figure out who my real friends are. I am no longer friends with those people. It hurts to know that we used to be best friends and now we don't talk anymore.
One good thing that came out of my last best friend leaving, is finding my best friend, Aubrey. I cannot ask for a better one. She is a very quiet person, but one day at school she came over to eat with me and my former best friend, Jennifer. As she continued to eat with us everyday, Jennifer decided to stop. From then on, it was just me and the quiet girl, Aubrey. Gradually, we started to talk more and hang out and we became best friends. The day she found out I had seizures was when we were with a group of people walking home from an activity. I stopped in my tracks and looked up at the stars. Jennifer tried to cover for me and told Aubrey what was happening. The other people were rude and commented that I was just doing it for attention. I walked home alone, crying, but that's besides the point. Later on, when we had hung out a couple of times, she asked me what I would want her to do when I was having seizures and how I wanted her to react. I told her to just pretend nothing is happening. Ever since then, she stays quiet when I have them and doesn't get uncomfortable or scared.
So, having Epilepsy has helped me realize who my real friends are.
Lately, I have been feeling better about my Epilepsy. I have some amazing people that I email who are in similar situations. It's so nice that though they aren't in the exact same situation as me, we still feel better knowing we are going through similar things.
I mentioned one of them in my previous post. She has a blog that you should all check out!
https://free22545.wordpress.com/
Stay tuned for Part 2: How To Properly React To Someone Who Has Seizures: Sara's Experience
Tuesday, January 26, 2016
What Are My Goals?
So, my previous post was all about following my goals. But, as I said, I don't have many.
The goals that I had in mind were big. Moving out, living on my own and getting my drivers license. Although those are great goals, I've got to figure out what I want to do in order to achieve them, which makes smaller goals in the process.
1. Moving out requires money. I have to live on my own which means I have to pay for rent. I will have to buy my own food, clothes....etc.
--I have this image of how I want things to be, but I found out it's not that simple. No wishing, Sara! You want something? Make it happen!
--I did take the first step (or some step) at living on my own, though. Find apartments that I can afford.
2. I cannot live on my own until I have money. How do I get money? Well, I have to get a job. Though I am working for my parents, I am not getting anywhere near close to the amount of money I need to support myself.
--The thing is, though I would love to move out and live on my own, I can't just yet. I am not emotionally and physically ready to work. So, this goal will have to wait.
3. Getting a drivers license seems like a more realistic goal at the moment. At the same time though, is it? I have Epilepsy.
--Over the years, I have slowly begun to lose hope that I would ever get my license. I started to accept that I would always have to rely on someone to drive me around, or I would have to use some other source of transportation. But, when my Neurologist told me a couple months ago that I would most likely get my license this year, the thought didn't process in my mind. Once it sunk in, the excitement lasted about a day and then I went back to no expectations. I've stopped getting my hopes up with the whole license thing because whenever I have hoped, it came crashing down.
I don't mean to sound like a depressing Sara, but those were my thoughts.
There is a lovely woman I email from an Epilepsy based website whom is very kind. We were talking about my goals and how I haven't felt like I have made any. She told me something along the lines of, "You got the VNS. That is a huge goal that you accomplished!" That took me by surprise because I never realized that that was true! The decision to get a VNS is huge! You are getting something put inside of you!
I think my main goal right now is to focus on improving my seizures. That means I have to keep my body healthy.
The goals that I had in mind were big. Moving out, living on my own and getting my drivers license. Although those are great goals, I've got to figure out what I want to do in order to achieve them, which makes smaller goals in the process.
1. Moving out requires money. I have to live on my own which means I have to pay for rent. I will have to buy my own food, clothes....etc.
--I have this image of how I want things to be, but I found out it's not that simple. No wishing, Sara! You want something? Make it happen!
--I did take the first step (or some step) at living on my own, though. Find apartments that I can afford.
2. I cannot live on my own until I have money. How do I get money? Well, I have to get a job. Though I am working for my parents, I am not getting anywhere near close to the amount of money I need to support myself.
--The thing is, though I would love to move out and live on my own, I can't just yet. I am not emotionally and physically ready to work. So, this goal will have to wait.
3. Getting a drivers license seems like a more realistic goal at the moment. At the same time though, is it? I have Epilepsy.
--Over the years, I have slowly begun to lose hope that I would ever get my license. I started to accept that I would always have to rely on someone to drive me around, or I would have to use some other source of transportation. But, when my Neurologist told me a couple months ago that I would most likely get my license this year, the thought didn't process in my mind. Once it sunk in, the excitement lasted about a day and then I went back to no expectations. I've stopped getting my hopes up with the whole license thing because whenever I have hoped, it came crashing down.
I don't mean to sound like a depressing Sara, but those were my thoughts.
There is a lovely woman I email from an Epilepsy based website whom is very kind. We were talking about my goals and how I haven't felt like I have made any. She told me something along the lines of, "You got the VNS. That is a huge goal that you accomplished!" That took me by surprise because I never realized that that was true! The decision to get a VNS is huge! You are getting something put inside of you!
I think my main goal right now is to focus on improving my seizures. That means I have to keep my body healthy.
Sunday, January 17, 2016
Following My Goals
Hello loves. I'm weird, I know.
Well, I have been having an amazing time here in Kentucky. There's so many things here that are different from where I live and it's great. I love the southern accent, the humidity and the food. The people are chill, too. (Haha)
On another note, I'd like to go back to my New Years Eve post. I talked about goals and that I would try to make some. Well, so far it hasn't happened. One of my goals was to get my license this year which is what my Neurologist told me I would probably be able to do. But, I can't exactly control that. For now, I want to make smaller goals and fulfill them.
I'm having trouble figuring out what my smaller goals should be. I have never been good at making decisions. Last night, it took me a couple hours to decide whether I wanted burgers or Mexican food for dinner. When I was nine or ten, my friend and I would go to the mall and buy clip-on earrings from Claires. It would take me about an hour to decide which ones to get. So, my point is, I need to figure out what my goals should be.
The things I want to do in my life are big. I want to move out this year. I moved out when I went to college last year, but that is it. That is just one of the things I would like to do.
Like I said in my New Years Eve post, I have never been one to make goals. I just kind-of make my way, hoping things turn out the way I want them too. I've never thought making goals was important, but I have been thinking about it, and I realize that I have nothing to lose.
I am a lazy person. I tell myself I will do something and I don't. I haven't made goals yet, even though I told myself I would make them on New Years Day. I have to make them, so that I know what to work towards.
Well, I have been having an amazing time here in Kentucky. There's so many things here that are different from where I live and it's great. I love the southern accent, the humidity and the food. The people are chill, too. (Haha)
On another note, I'd like to go back to my New Years Eve post. I talked about goals and that I would try to make some. Well, so far it hasn't happened. One of my goals was to get my license this year which is what my Neurologist told me I would probably be able to do. But, I can't exactly control that. For now, I want to make smaller goals and fulfill them.
I'm having trouble figuring out what my smaller goals should be. I have never been good at making decisions. Last night, it took me a couple hours to decide whether I wanted burgers or Mexican food for dinner. When I was nine or ten, my friend and I would go to the mall and buy clip-on earrings from Claires. It would take me about an hour to decide which ones to get. So, my point is, I need to figure out what my goals should be.
The things I want to do in my life are big. I want to move out this year. I moved out when I went to college last year, but that is it. That is just one of the things I would like to do.
Like I said in my New Years Eve post, I have never been one to make goals. I just kind-of make my way, hoping things turn out the way I want them too. I've never thought making goals was important, but I have been thinking about it, and I realize that I have nothing to lose.
I am a lazy person. I tell myself I will do something and I don't. I haven't made goals yet, even though I told myself I would make them on New Years Day. I have to make them, so that I know what to work towards.
Tuesday, January 12, 2016
Kentucky Bound! (Traveling With Epilepsy/VNS)
Hello! I have something interesting (I think) to talk about today!
Today I am flying to Kentucky with my sister, her husband and their toddler. They live there, but they were visiting my family for Christmas. Almost everyone in my family has gone there to see them, except my Dad and I. Soooo.....I started out the day at the Salt Lake City Airport.
I have been a bit freaked out lately. I have the VNS and I have read a few stories online about people having gone through airport security and their VNS being turned off. A couple months ago, I talked to my Neurologist about flying and what I should do about security. She told me to not go through the big scanner, and to only get wanded and searched by hand. Unfortunately, she did not tell me about the smaller scanner. Some of the stories and experiences I have read about online were something along the lines of, "I went through security and my VNS got turned off." Another one, "I showed them my VNS card, and they escorted me around the machines. I got wanded and patted down instead. I got tested for gun residue." So, I figured that was what I would do.
I arrived at the Salt Lake City Airport, and I got ready to go through security. I told the lady who checked my ticket and I.D., that I had a Vagal Nerve Stimulator and it was implanted inside me. I told her I couldn't go through the machines. She told me to tell the workers over by them. After putting my things on the conveyor belt, I went up to the nearest worker and told her that I couldn't go through. She asked if I could go through the scanner, which was the big one, and I said yes. I don't know why I did. I felt so pressured and anxious and I just....went through the scanner. After I got out, I talked to my sister about it. I was terrified that my VNS had turned off. I waited about five minutes, and luckily enough, it went off. I was so very happy.
The flight to Denver was good. I always get a window seat because I cannot handle being in the middle, and the aisle seat makes me nervous. Don't ask me why. Some of you may understand. The flight was about an hour and a half long and I listened to my music and played some games on my phone.
Right now I am at the Denver Airport, waiting to transfer to another flight. I am writing this because we have a while until we board. My sister is really weird. She got four hours of sleep last night and she is taking a nap on the floor. I don't blame her.
As my oldest sister would say, "She's an odd duck". Except my whole family are odd ducks. I don't really know what I am talking about now.
I didn't bring my magnet with me. Why? Because it would ruin the security equipment. I do have my Lorazepam, which I use when I have clusters of seizures. I did wish I had the magnet when I was worried about my VNS being turned off. It would have been helpful to use it to see.
I am now in Kentucky. The flight here went well. It was an extremely small plane, and though I am not claustrophobic, I sure felt that way.
The trip today was exciting and I am super happy that I did not have any seizures, much less having my VNS turned off.
Today I am flying to Kentucky with my sister, her husband and their toddler. They live there, but they were visiting my family for Christmas. Almost everyone in my family has gone there to see them, except my Dad and I. Soooo.....I started out the day at the Salt Lake City Airport.
I have been a bit freaked out lately. I have the VNS and I have read a few stories online about people having gone through airport security and their VNS being turned off. A couple months ago, I talked to my Neurologist about flying and what I should do about security. She told me to not go through the big scanner, and to only get wanded and searched by hand. Unfortunately, she did not tell me about the smaller scanner. Some of the stories and experiences I have read about online were something along the lines of, "I went through security and my VNS got turned off." Another one, "I showed them my VNS card, and they escorted me around the machines. I got wanded and patted down instead. I got tested for gun residue." So, I figured that was what I would do.
I arrived at the Salt Lake City Airport, and I got ready to go through security. I told the lady who checked my ticket and I.D., that I had a Vagal Nerve Stimulator and it was implanted inside me. I told her I couldn't go through the machines. She told me to tell the workers over by them. After putting my things on the conveyor belt, I went up to the nearest worker and told her that I couldn't go through. She asked if I could go through the scanner, which was the big one, and I said yes. I don't know why I did. I felt so pressured and anxious and I just....went through the scanner. After I got out, I talked to my sister about it. I was terrified that my VNS had turned off. I waited about five minutes, and luckily enough, it went off. I was so very happy.
The flight to Denver was good. I always get a window seat because I cannot handle being in the middle, and the aisle seat makes me nervous. Don't ask me why. Some of you may understand. The flight was about an hour and a half long and I listened to my music and played some games on my phone.
Right now I am at the Denver Airport, waiting to transfer to another flight. I am writing this because we have a while until we board. My sister is really weird. She got four hours of sleep last night and she is taking a nap on the floor. I don't blame her.
I didn't bring my magnet with me. Why? Because it would ruin the security equipment. I do have my Lorazepam, which I use when I have clusters of seizures. I did wish I had the magnet when I was worried about my VNS being turned off. It would have been helpful to use it to see.
I am now in Kentucky. The flight here went well. It was an extremely small plane, and though I am not claustrophobic, I sure felt that way.
The trip today was exciting and I am super happy that I did not have any seizures, much less having my VNS turned off.
Friday, January 8, 2016
So Many Medications
Hello everybody! Time to talk about drugs, and I do not mean illegal drugs.
Since I first started having seizures about seven years ago, I have been on numerous medications. The first one I was put on was Keppra, which I am currently still taking. Now. My Neurologist at the time did not help at all. He would order tests after almost every appointment, and nothing would show up. I decided to switch to a better Neurologist at the Primary Children's Hospital in Salt Lake City. She was much better, and cared deeply about my health.
When I continued to have Grand Mal Seizures, my new Neurologist put me on Zonegran. Now. Zonegran did not work for me. While on it, I lost my appetite, and as a result I lost about 10-15 pounds. I was taken off of that, and a day after, my mom took me to Denny's and I ate a large meal. That was fun.
After that, I tried out Trileptal. Trileptal was fantastic because it stopped the Grand Mal Seizures, and I would only have Complex-Partial Seizures. In my previous post, I talked about those, and I explained what they looked like specifically for me. I would clench my left fist, turn my body to the left, and freeze in place.
One day at one of my appointments, we were discussing if I should try a new medication. At that point, I was rather nervous to try a new medication, but I was willing to try. I was put on Lamictal. I am grateful I went along with it, because I stopped having Complex-Partial Seizures, and only had Simple-Partials.
When I turned 18 years old, I stopped going to that Neurologist because I was too old, and I started going to one that is about 30 minutes away. She is always booked, and so I have only seen her twice. Instead, I see her Nurse Practitioner. She is fantastic, and she has helped me tremendously. She put me on another medication called Vimpat, which was the worst medication I have ever tried. It caused me to have extreme double vision and dizziness. She continued to tell me that I should wait a month to see if my body would get used to it, but I refused. I told her that I would not stay on that. I was crippled. I could never leave the house or go to work.
My Neurologist put me on Extended Release for all of my medications, seeing that it can make a huge difference for controlling seizures. Extended Release is when you only take the medications once a day, but the dosage is still the same. The only medication I was not on Extended Release for was Trileptal. For about a year and a half, I had extreme double vision, although it was not as bad as when I was taking Vimpat. My Neurologist had given me samples of the Extended Release of Trileptal to see if that would make the double vision go away, and it worked. Soon after I ran out of the samples, I learned that my insurance would not cover the Extended Release, which is called Oxtellar XR. We would have to pay for it out of pocket, which would be about a thousand dollars a month. Obviously, my parents would not be paying for it. The only option would be to write our insurance company to request it.
After confusion, and the letter my Neurologist wrote to them did not arrive, my parents and I wrote separate letters to our insurance company. I did not care if it was a nice letter. I let out all of my feelings, and told them that I was not able to do anything. I could not go to my classes and I was stuck in bed half the day until the double vision went away. About two weeks later, the request was approved. My mom called me and told me that it was approved, and that I would be able to take Oxtellar XR! That was one of the happiest days of my life.
I have been on Oxtellar XR since May of 2015. I have not had double vision since. I have been incredibly grateful for being able to take Oxtellar XR.
Since I first started having seizures about seven years ago, I have been on numerous medications. The first one I was put on was Keppra, which I am currently still taking. Now. My Neurologist at the time did not help at all. He would order tests after almost every appointment, and nothing would show up. I decided to switch to a better Neurologist at the Primary Children's Hospital in Salt Lake City. She was much better, and cared deeply about my health.
When I continued to have Grand Mal Seizures, my new Neurologist put me on Zonegran. Now. Zonegran did not work for me. While on it, I lost my appetite, and as a result I lost about 10-15 pounds. I was taken off of that, and a day after, my mom took me to Denny's and I ate a large meal. That was fun.
After that, I tried out Trileptal. Trileptal was fantastic because it stopped the Grand Mal Seizures, and I would only have Complex-Partial Seizures. In my previous post, I talked about those, and I explained what they looked like specifically for me. I would clench my left fist, turn my body to the left, and freeze in place.
One day at one of my appointments, we were discussing if I should try a new medication. At that point, I was rather nervous to try a new medication, but I was willing to try. I was put on Lamictal. I am grateful I went along with it, because I stopped having Complex-Partial Seizures, and only had Simple-Partials.
When I turned 18 years old, I stopped going to that Neurologist because I was too old, and I started going to one that is about 30 minutes away. She is always booked, and so I have only seen her twice. Instead, I see her Nurse Practitioner. She is fantastic, and she has helped me tremendously. She put me on another medication called Vimpat, which was the worst medication I have ever tried. It caused me to have extreme double vision and dizziness. She continued to tell me that I should wait a month to see if my body would get used to it, but I refused. I told her that I would not stay on that. I was crippled. I could never leave the house or go to work.
My Neurologist put me on Extended Release for all of my medications, seeing that it can make a huge difference for controlling seizures. Extended Release is when you only take the medications once a day, but the dosage is still the same. The only medication I was not on Extended Release for was Trileptal. For about a year and a half, I had extreme double vision, although it was not as bad as when I was taking Vimpat. My Neurologist had given me samples of the Extended Release of Trileptal to see if that would make the double vision go away, and it worked. Soon after I ran out of the samples, I learned that my insurance would not cover the Extended Release, which is called Oxtellar XR. We would have to pay for it out of pocket, which would be about a thousand dollars a month. Obviously, my parents would not be paying for it. The only option would be to write our insurance company to request it.
After confusion, and the letter my Neurologist wrote to them did not arrive, my parents and I wrote separate letters to our insurance company. I did not care if it was a nice letter. I let out all of my feelings, and told them that I was not able to do anything. I could not go to my classes and I was stuck in bed half the day until the double vision went away. About two weeks later, the request was approved. My mom called me and told me that it was approved, and that I would be able to take Oxtellar XR! That was one of the happiest days of my life.
I have been on Oxtellar XR since May of 2015. I have not had double vision since. I have been incredibly grateful for being able to take Oxtellar XR.
Monday, January 4, 2016
Complex-Partial Seizures
Hello.
One of my previous posts was about Simple-Partial Seizures. So, you now know that there is more than one type of seizure. One type is called: Complex-Partial.
At the beginning of my epileptic life, I had Grand Mal Seizures. Everybody recognizes those. You know, a person thrashing around on the ground. Well, about a year after I had Grand Mals, I started to have Complex-Partials. A brief definition of a Complex-Partial seizure is: movement. These look different in every person. In my case, I would stop in my tracks, clench my left hand, twist my body to the left, and freeze in that position. Those seizures would last about 15-20 seconds.
I bet you can imagine how embarrassing those were. I would have them at school, home, the store...everywhere. There is one time I remember in particular, when I was walking down the hall at school, and it happened. I stopped in my tracks, clenched my hand, twisted my body, and froze. Being aware during the seizure, I was glad that nobody was walking down the hall. That gladness didn't last for long. Soon after that thought, two people talking together, walked down the hall, passing me. You can imagine what they were thinking: "Why is this girl standing in this weird position?" I know I would wonder that.
Another time I had a Complex-Partial Seizure, was when I was at home. I had just pulled the ketchup out of the fridge, and my mom was sitting on the couch talking to me. I felt the seizure coming, but I couldn't stop it. Luckily I hadn't opened the ketchup bottle yet, because it was upside down while my body was twisted. My mom noticed I wasn't talking anymore, so she waited. I remember feeling humiliated.
There were many times I had Complex-Partial Seizures, and it never got any easier. Over time, my Neurologist would add another medication, testing it to see if it would work for me. I went from Keppra, which didn't control my Grand Mal Seizures anymore, to adding Trileptal to that. When the Complex-Partial Seizures weren't getting better, Lamictal was added. I've always been nervous about being put on new medications, but luckily the Lamictal worked, and now I only have Simple-Partial Seizures.
Though I still have seizures, I try to think about how much better they are. Don't get me wrong, I hate having Epilepsy with a passion. It never gets easier. The humiliation never goes away. Despite that, I still try to think about how far I have come.
One of my previous posts was about Simple-Partial Seizures. So, you now know that there is more than one type of seizure. One type is called: Complex-Partial.
At the beginning of my epileptic life, I had Grand Mal Seizures. Everybody recognizes those. You know, a person thrashing around on the ground. Well, about a year after I had Grand Mals, I started to have Complex-Partials. A brief definition of a Complex-Partial seizure is: movement. These look different in every person. In my case, I would stop in my tracks, clench my left hand, twist my body to the left, and freeze in that position. Those seizures would last about 15-20 seconds.
I bet you can imagine how embarrassing those were. I would have them at school, home, the store...everywhere. There is one time I remember in particular, when I was walking down the hall at school, and it happened. I stopped in my tracks, clenched my hand, twisted my body, and froze. Being aware during the seizure, I was glad that nobody was walking down the hall. That gladness didn't last for long. Soon after that thought, two people talking together, walked down the hall, passing me. You can imagine what they were thinking: "Why is this girl standing in this weird position?" I know I would wonder that.
Another time I had a Complex-Partial Seizure, was when I was at home. I had just pulled the ketchup out of the fridge, and my mom was sitting on the couch talking to me. I felt the seizure coming, but I couldn't stop it. Luckily I hadn't opened the ketchup bottle yet, because it was upside down while my body was twisted. My mom noticed I wasn't talking anymore, so she waited. I remember feeling humiliated.
There were many times I had Complex-Partial Seizures, and it never got any easier. Over time, my Neurologist would add another medication, testing it to see if it would work for me. I went from Keppra, which didn't control my Grand Mal Seizures anymore, to adding Trileptal to that. When the Complex-Partial Seizures weren't getting better, Lamictal was added. I've always been nervous about being put on new medications, but luckily the Lamictal worked, and now I only have Simple-Partial Seizures.
Though I still have seizures, I try to think about how much better they are. Don't get me wrong, I hate having Epilepsy with a passion. It never gets easier. The humiliation never goes away. Despite that, I still try to think about how far I have come.
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