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.

Auras

Sorry it's been a while. I have been really sick. But, here's a post for you all!

What is an aura?

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

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