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:

• 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)

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

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.

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.

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.

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.

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.