#clonic

Everything and More: A Compact History of Infinity by David Foster Wallace, page 14

clonus:

(Medicine) muscular spasm involving repeated, often rhythmic, contractions.

clonic a. convulsing, having a spasm

Hello! I'm Crystal. I turned 24 this year. This is my story about what Epilepsy has done to my life. 

When I was 10 years old, and started having bad fevers when I'd get sick, my Mom told me about a time when I was a baby, and had high fever seizures. Until I was 10, I never knew I had any health problems. You know, aside from chicken pox and such in Kindergarten. Apparently I was almost pronounced dead as a baby because of one of them. Obviously I don't remember any of this.

I didn't understand at 10 what having seizures meant. I just knew Mom didn't want me having fevers because of them. So we tried to keep me as healthy as possible.. 

At the age of 15, we moved to another state. Halfway through the school year, I started blacking out.. but that wasn't the only thing. My hands would randomly go out of control, my legs sometimes as well, but not as often. I would throw my cereal, break bowls, spill milk. I was becoming terrified of doing anything. Blacking out while walking down stairs to your locker isn't great.. quite a few apologies given out those days. My mom finally had enough and took me to the hospital. I got an EEG. They reported that the tests said I was fine. Little did I know...

I finished out that school year. Moved back to Ohio.. The episodes didn't stop. Then, one day.. While living at one of my Aunts houses... I was taking a bath, I got half dressed, was rinsing out the bathtub... Next thing I know, I woke up, sore as hell, soaking wet. The thing I remember most though, was not remembering anyone at all besides my Mom. I screamed as loud as I could for her. Apparently water had leaked into the kitchen. Anyway, as she helped me get dressed, we went downstairs. I couldn't stop questioning where I was, who the people in the pictures were. What just happened, who that person was... I don't know who was more scared, my mother.. or myself? I was rushed to the ER by my mom and her boyfriend (now husband.) I didn't know what to say or do.

I don't remember the trip to the hospital, or what happened that day. I just remember being scheduled for a childrens hospital. Skipping all the waiting, the doctors visit, the EEG... Turns out I have Epilepsy.

I was just like, lolwut? Seriously. I had no idea what to think.

I had repeated doctors visits, test monitoring my brain waves, and blood work for the multiple different medications I was put on. Well, let me talk about those really quick.

Topamax - I still had my energy, I didn't feel depressed, controlled my seizures for a period of time then didn't anymore. They chose not to up the dose, but to change the medicine...

Lamictal - Still had energy but.. I had a really bad rash within a week of taking it. It itched, it burned. They took me off it, said I was allergic to it.

Dilantin - I'm putting this before the next one because it's my inbetween medicine. I've had to take it on two different occassions. The first time was because I had ran out of Keppra, and at the time, it cost $300 to refill a 30 day supply -- uninsured. So they recommended this to me to make due until I could get insurance. The second time, I was wondering why I ever went off it in the first place since it was so affordable. I got the script again. Then I remembered why. It made my nerves a wreck. I felt like bugs were crawling all in my skin. It drove me crazy. Keppra -  This medicine I've been on since I got off Lamictal. It's controlled my seizures well enough that I no longer have Tonic, Clonic, Tonic Clonic, or Spasm seizures as long as I'm taking it. However, I still have Atypical/Absence seizures. (My family doesn't actually notice these...) Confused? See here for information on Seizure Types. I had a few more seizures since then.. One which my Moms dog, Dale.. notified my mom and her husband about me having a seizure. Amazing dog, he wasn't trained to do that. That one put me out of school for 3 weeks because of being terribly sore and it was hard to walk. It wasn't the 3 weeks out of school that didn't make me go back.. It was missing 3 weeks of school during exam periods and not being able to reschedule them... that made me scared of returning. Eventually we got me some at home tutoring (juvi-hall provided...ech) but.. that didn't last long, my Tutor moved to TX. I passed the 10th grade through him. For 11th grade they had me do online schooling. I absolutely loved it, to be honest. I could do it at my own pace, they provided materials. It was so easy and I was speeding through it. There was a problem though.. I missed the state graduation test, that was the 2nd time I missed it... First time was during that seizure in 10th grade. It was through my own stupidity on missing it the 2nd time. I admit that. But.. the third time wasn't my fault, and I mean it.  We moved back to Indiana. My Mothers-Fathers-Brothers-Wife... (Married into the family Aunt..) called my Mom one night.. Saying "some school kept calling for a Crystal Green.. I kept thinking, I don't know a Crystal, then I remembered.." well, some story later.. I apparently had to be at school by 8am EST, and I lived a fricking state away, my Step-Father worked night shift, and we had no way in hell at getting me there, and getting in sleep before the actual test. We couldn't do it. After that, I lost my online schooling. We tried to enroll me into HS here... They said I would have to start over as a 9th grader (I was almost supposed to be a Senior!) because.. get this... they couldn't find ANY of my credits. Anywhere! Not at my old HS in Ohio, or the one I had went to previously in IN. I refused to go back as a Freshman. Obviously, that means I didn't graduate.. But that's not the worst part.. I still haven't gotten my GED. Different things keep stalling me. First was.. we didn't have a spare car to go. Their only open hours was my Step-Fathers work hours... My Moms health has gotten increasingly worse, so.. I don't really want her driving me. My boyfriend works during their open hours so he can't drive me.. And when I lived near it, I did more research about the GED here... and maybe I misread but... If you take the pretest, you have to go to classes they provide, and pay 60$ each time you test for the GED.. I think if you don't test for it, the classes ended up costing money or something, I don't quite remember.. But.. I'm back at my Moms (My boyfriend, friend, and I had our own apartment, they paid rent...)  Excuses. Yeah, I'm told that a lot.. I've never had a real job aside from babysitting or helping paint houses.. The only real interview I got.. they told me to put those on the list but.. Turns out those only hurt you apparently.. I didn't get the job I had the interview for.. Turns out trying to work at a Video store that doesn't rent a lot of games.. Want more knowledge in Movies than games. That, and the manager was a casual gamer so.. my knowledge meant nothing. Basically, the past.. 8 years? I've done nothing but sit around, I guess. Keppra made me an extremely depressed, self doubting person. People don't think medicine can change you this badly? I wanted to be a Lawyer before all this began. I was on a soccer team, jersey #16. If you don't think it can change you, check out who I used to be. I know this all wrapped up being pretty sad. Honestly? I do want to get my GED, but I want friends to help me prepare. I do want to drive, but.. an uninsured overheating car isn't exactly the best bet for learning to drive. I want a job, but.. Living in the middle of no where, and your only good qualifications are for desk jobs... where they don't exist.. doesn't help ;; I extremely dislike myself for letting my Mom down.. Though she never says that I did... When I'm here, I try to help her as much as possible.. She's really sick... but even I get worn out easily, no matter how hard I try. I used to exercise a lot, why does my heart hate me exercising... x-x; Erm, anyway, time to end this, this isn't how I wanted this entry to go. My apologies. ~ Crystal 

Edit  :

Oh, I forgot to include what I'm doing now! I'm trying a vitamin B complex to help with the negative side effects of keppra.. (8yrslater..) I hope it contradicts my focus and depression and energy.. I would really love to be active and cheerful. 

Edit #2 : 

I forgot to include my triggers. Heck, I'm still learning what they are. These don't all necessary trigger pure Tonic Clonics, but, some trigger other parts.

Flashy lights (yeah, I'm the common one, and people have bullied me by sending flashy links, trick pages, etc)

High Fevers.

High stress/anxiety levels.

Extreme heat.

Overworking myself too much. Know your limits guys.

I have hormonal clonic seizures. I hate these the most.