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False hope.
December 11th, 2017.
I lost my anger the other day. I have never felt such rage in me before. I hated the feeling. I will never let myself get to that point ever again. I had a follow up appointment today at my neurologist. She asked how I was feeling on keppra. Except, thats not how she asked. She asked in a way that It sounded like I could come off medicine. I was so excited. I hate medicine. I hate putting chemicals in to my body like that. Yes, It prevents seizures. Is It worth It? For now It is. On the plus side I graduated from frequent monthly visits to twice a year. Fingers crossed 2018 brings in health and happiness.
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“So the doc said I have ____ Seizures. What does that actually mean?” An Updated Cheat Sheet
So you’ve been diagnosed with epilepsy. Great… what does that even mean?
“Epilepsy is a seizure disorder,” meaning you’re brain is more likely to send off mixed signals, than the next guy. But that’s alright, ‘cause I’m going to lay down the basics of what you need to know. Lol.
First, let’s get this straight: everyone is capable of having a seizure. You stick lil’ Timmy infront of a high speed strobe for long enough, sooner or later his brain will say “What the hell am I looking at? I can’t keep up!” And he’ll wind up on the floor.
Folks who have Epilepsy, like you and I, are no different. We see things, hear things, feel, and taste, just like any other human being. Okay? What I’m trying to get at here is you are not a freak of nature. You are not a mutant. Sadly, no, you do not have special powers to set objects aflame. (I know. That bummed me out too.) No! Instead, you’re just a normal dudelet - just chillin with the rest of the human race.
But what does makes us different, is that we have a lower seizure tolerance than most. That’s it. I know right? When you say it like that, it doesn’t sound like a big deal. That’s cause it isn’t. What is a big deal, are the seizures themselves, which I’ll get to in a hot minute.
So what IS a seizure? Great question. “… a sudden surge of electrical activity in the brain,” says The Epilepsy Foundation (epilepsy.com). Another, but equally scientific, definition describes it as, “the workers in your brain going, ‘What the actual fuck are we dealing with here?’ And proceeding to lose their shit,”
Pretty much, something - be it lights, lack of sleep, stress, booze, high pitched beeping, the sight of toast, whatever - will set off this seizure. This is called a Trigger. Triggers are things that our brains don’t generally enjoy. They tend to me things that could give a person headaches, or migraines; or make you feel out of sorts if you have to deal with them for too long. It is possible for some to “delay” a seizure, or even stave it off completely. Not everyone can do this though. I know someone who’s been able to prevent her seizures by sleeping with a foot on the floor. I (sometimes) can push one off if I feel one coming on, by either her being physically active or focusing on something solid, to remind myself im not floating away. But as I said, not everyone can do it. It depends on what type of seizures you have, and how in tune you are with your body. I only figured out my method after years of experimenting.
Anyway, so we got the basics. Back to….
Seizures! There are two major categories from which we have a variety of flavors.
There’s Focal and Generalized. The main difference between the two is how they start. Easy enough, right? (I’ve heard tell of a third classification “Unknown Onset”, but we’ll get into that later)
First we have Focal Onset: Focal seizures happen in specific parts of the brain - Sort of like a controlled mob.
Focal Onset Aware (aka Simple Partial): Im gonna be frank with you here. There are like a million types of Simple Partial Seizures. I probably won’t hit every kind, and I apologize if I’ve skipped someone out there. Ya know. My bad. Nonetheless I’ll do my best.
Simple Partials are pretty cool is that you are awake for them. Oh yeah. That’s right. You can have a seizure and be totally cognizant. These are the ones many refer to as “Auras”. Yeah, you know that “warning” you get before blacking out? That my friend is most likely a simple partial seizure. They’re like little seizures. Aw cute, right. No! They’re a pain in the ass! (Ehem. Apologies) anyway, as I said before, they can come in a whole bunch of types. To save time, I’m just going to give you a list of the effects:
Some people experience Deja Vu, out of body experiences, weird tastes in your mouth, (there’s emotional/psychological kinds) that’s make you have intense sorrow, or a sense of impending doom, others make you randomly filled with a god-like rage.
Others make your hands, fingers, toes, legs, etc twitch.
Some make it IMPOSSIBLE to find the right words/understand words/even read, and you suddenly feel illiterate and as if English is your second language despite being brought up in the US. (I’m not emotionally invested or anything).
Honestly, for these, you really should look it up yourself. I’ll be doing a separate post just for them, but nonetheless. It’s too important, and it’s one that truly is unique to the person.
Focal Onset Unaware (aka Complex Partial):
These are like simple partial seizures, but you’re NOT awake. Apparently many experience lip smacking during it. I wouldn’t know, because I’m out for the count. The one thing I do know is they can go into Generalized Seizures. This is not common however, that’s just the case for me.
MOVING RIGHT ALONG
Next we have Generalized: “Generalized” Seizure are seizures that effect both sides of your brain. *Imagine a stray cluster of teenage neurons are having a house party, and EVERYONE shows up.*. [Neurons are the little electric dudes that’s race around your head and make everything work/tell different parts of your brain what’s going on]
Tonic-Clonic (Motor): This is the big nasty one that people believe all seizures look like. The person loses consciousness, and convulses (shakes).
What It’s Like: They don’t hurt while it happens; but I’ll be honest with you, it can feel like you’ve been hit by a bus coming out of it. Basically, you’ve been clenching up and releasing muscles you didn’t even know you had over and over really really quickly. It’s like being super out of shape, and then made to do a triathlon athlete’s complete workout circuit in 2-5 minutes. At a weird angle, so you probably get dinged up along the way. So yeah. I’d describe it as waking up to limp noodles for tendons and joints, and fiery rocks for muscles. It’s sorta like how you’d imagine the hero of an action film would ACTUALLY feel like if the scenario were real.
Absence: these are super quick, but can happen MANY many times a day. They’re so quick that they’re almost impossible to notice. You stare for a few seconds, and snap out of it. I know, not very scary. What sucks is that you can lose time with them. So one second you’ll be lovin life, and suddenly, black, you forgot what you were saying, and a whole bunch of things that happened recently. This all comes back though, eventually.
Clonic Seizures: Unlike Tonic Clonic, these big and nasties happen while you’re awake. (Fun fact: Tonic is the part of the seizure where you stiffen and fall unconscious. Clonic is where you convulse). So needless to say, these can hurt. Actually, they do hurt. A lot. I’ve only had a couple in my time, thankfully, but it feels like everything’s described earlier for Tonic-Clonics, except you are wide awake the entire time to enjoy every bump, scratch, and uncontrolled spasm. Oh, and it feels like there are electric shocks going through you. At least it did for me. These tend to last a few minutes.
Tonic Seizures: these tend to happen in your sleep, but they don’t have to necessarily. The muscles in your legs, arms, or abdomen tense up for about 20 seconds. It’s relatively harmless, but can mean for some serious loss of balance if it happens while standing up. (Also they’re just a pain, and can wear you out, honestly)
Atonic: These I’ll admit, can be spooky. Basically your muscles go limp for about 15 seconds at a time. So you might now be able to hold your head up; or suddenly you drop everything cause your arms go out. It’s not fun. It’s actually less than 15 seconds, but some people can have a bunch of these in a row. If its bad enough, some may consider wearing a helmet, if a fall hazard arises.
Myoclonic: Muscles will jerk as it electricuted. Apparently these seizures can start in the same part of the brain as Atonic, and many who have one have been known to experience the other.
So that’s what you missed on Glee! Any questions, comments, moans or groans, shoot em up my way! If anyone has any knowledge of Tonic Clonic Seizures, id love to hear it! And if I missed anything, please let me know!!
Hope this can be of some help for you newbies out there, (or for you other folks like I who never got the full story on their diagnoses til much later lol)
And don’t worry friend. I know Epilepsy is rough. I know it sounds scary, but you’re going to be fine. You’ve got an entire community who has your back :) So hang in there Kiddo!
Sincerely,
Captain Fantastic Spastic
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Small note to all those in my life who judge me incorrectly… And, you know, to help others, spread awareness and all that shit.
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Deal(ing) with it.
November 21st, 2017.
I am okay. Boy does that feel good to say. I made it past the initial “omg this is the worst thing thats ever happened to me” phase of Keppra. Now its just the remembering to take my pill each morning and night. I actually stumbled across an app called “Round” that you set up to send you reminders to take it which has been helping me tremendously. I have a week pill dispenser but at the end of the week I am to lazy to refill it to its useless *face palm*. When I was first diagnosed I was in such a funk and felt so sorry for myself. But now I look back and I am actually embarrassed of that. Sorry?!!! I have such a mild case of epilepsy. People have grand mal seizures all day everyday. I have absence seizures and have had one grand mal. I am BLESSED. I am blessed. I am blessed. A constant reminder to myself. I can live my life. I can still be a preschool teacher, I can still drive, I can still have my independence. My epilepsy will not control my life, I will. That is empowering. That is how I choose to live. This is how I choose to believe. Staying humble, feeling blessed.
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Keppra
Today is October 15th, 2017. I have been on Keppra for a little over a month.
OH
MY
GOD.
Keppra SUCKS. It’s hard for me to wrap my mind around everything going on in my life. I mean, I just turned 22 and I'm only just getting diagnosed with epilepsy. I have gone my whole 22 years with what I thought was no problems. I didn't know I was having seizures when I was having them. I was fine. I had my grand Mal seizure at work and BAM. “You're epileptic here is some medicine”. That isn't an exact quote but it might as well be. Weaning on to Keppra was miserable. When the doctor talked to me about the medicine I was told I MAY experience “moodiness, dizziness and drowsiness” or I may not. Let me tell you something. I experienced all of that AND MORE. I was super tired (still am), my anxiety was through the roof, super jittery, I would cry at nothing at all, I had leg & foot cramps (this one worried me I googled it its a thing go figure) and the keppra rage is REAL. I get so mad SO EASILY. Fortunately now being on the medicine for a little over a month I am finally feeling better. I still get random flares of rage. I also googled that and people who have been on the medicine for a year still experience this so I'm thinking this is something ill always feel, just have to control. Starting the medicine I cut the pill in half and took half in the morning half at night and it worried me that I wasn't even on my full dosage and was having such a miserable time. BE YOUR OWN ADVOCATE. I messaged my doctor and told her I was NOT ready to start the full amount and that I hated how I felt. I stayed at the half a pill for another week and at the second week mark I felt a lot better so I started the full pill in the AM and full pill at PM. A lot has been going on with work (unrelated to my epilepsy) but I was forgotting to do A LOT of stuff which made me think that maybe my epilepsy was affecting my memory BUT IT WASNT. Life has been rough folks, but I will get through this. I will be okay. I am not my diagnosis, rather, I am a 22 year old woman who lives in NC with her family and works full time and has epilepsy. THAT IS ME. That is who I will always be. Keppra does not define me. I define ME.
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I just got this patch for my little sister who’s anxious about her first day of 4th grade.
WHY COULDN’T I HAVE THIS WHEN I WAS A KID?
Edit: People are messaging me about where they can get it… Here is the link: https://fadingspace.com/collections/patch/products/trying-my-best
Edit 2: They reached out with a free shipping coupon code for you guys: “TUMBLR”
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Epileptic
Tuesday, September 5 2017.
Today at work I got a call from my neurologist. I didn't answer because I didn't hear it, so they left a voicemail. “Hello were calling for ****************** regarding your EEG results. We’d like to talk to you in greater detail and not leave this on voicemail so wed like to get you in to the office as soon as possible to discuss what we have seen and discuss treatment plans. Thanks, give us a call back”. My stomach drops. I thought since it has been so long since I have my 3 day EEG that everything was okay. It was just a one time thing. I call back immediately. My mind and heart racing. I was told something like “we see something underling and reoccurring” but I wasn't really paying attention. I was shocked and quite frankly I was and still am pissed. Almost 2 months ago I had my take home EEG and I'm only just getting a phone call? If its so urgent you want to get me in and start talking about treatment why is it NOW urgent? It should have been urgent a month ago. Im shocked because since it has been so long I was not expecting this. But after thinking about it, I'm okay. I was always so annoyed that I didn't have any answers as to why I had a seizure in the first place. Ill know more information tomorrow, wish me luck. Send me some good vibes please.
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I did my ambulatory EEG. I had it put on at 10:30 AM Monday July 10th and it was taken off this morning Wednesday July 12th at 7:45 AM. Only a few attachments were visible but there must have been 12 sporadically placed throughout my hair. Let me tell you, this thing is TORTURE. I couldn't take a shower for those days it was on. I took a shower before my appointment Monday so my hair wouldn't be insanely greasy and I used baby wipes the following day. I had to carry around a side satchel that the machine thats collecting the data sits in and it was choking me and rubbing on the little nobs on my chest (pictured) which was pulling at them. There were cords everywhere which made sleeping extremely difficult and getting changed was awkward. At the end of the day, it really wasn't THAT bad but Im way glad its over. I really don't think they are going to see anything because I have felt totally fine which is frustrating because I just want some answers. I’ll update when I get the results about how it went.
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Bills Bills Bills
How many bills am I going to get regarding my seizure on doctor/hospital visits? The ambulance, my MRI, the hospital ER room, the neurologist, my EEG and on Monday I will have my ambulatory EEG. The bills just keep coming. Who has the money for all of this? I don't. Who wants to pay my bills? Not me. My mom WORKS FOR novant health care which is also our insurance holder. They do cover some, but not a lot. Its incredible. Every medical treatment I have utilized has been novant. I just don't understand. What if I was homeless without a penny to my name? Would they still have treated me? Would I be getting these kinds of bills? Im not stupid, I understand this wouldn't be free. However, I HAD A GRAND MAL SEIZURE. A medical emergency considering it was my first one. This is crazy. Someone save me from my necessary medical debt.
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This post is from May 18th, 2017. The day I had my seizure. My boss made this our Facebook status because I work in a small town and everyone knows whats going on and driving past my job, a daycare, people start asking whats up. I remember seeing my phone for the first time after. The amount of texts and fb messages from parents from my job. Such a surreal experience. If I didn't bite my tongue up really bad and if my whole body wasn't sore for 3 days after, I would never believe that it happened to me.
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Blessed...but stressed. June 19th, 2017.
I am so lucky to be surrounded by positive vibes and positive people. When I started going back to work, everyone was giving me the biggest hugs and wishing me well. I was told I was loved so many times and I have never felt that kind of positive power before. Don't get me wrong, my family tells me they love me all the time and so do my friends. But these people only know me from my job. Granted, before my seizure, I was working 40+ hours every week and I saw these families almost everyday. Anyway, the love I felt was...overwhelming? But in the best kind of way. I received a huge card with the sweetest messages and signatures from families and the children. I cried for a long time. Happy tears, but tears none the less. I got home that night and re read the card and cried again. How did I get this lucky? Im from Long Island and I moved to NC with my mom and dad and 3 younger siblings with no idea what I wanted to do. I found this daycare/preschool by luck. Luck. Ive never felt this lucky before. But here I am, feeling so beyond loved and blessed. I love my tribe.
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It hit me.
June 5th, 2017. It has been 18 days since I have had my seizure.
18 days since my whole life changed.
I feel so corny when I say that because it was my first one and I have felt totally fine ever since physically.
A lot has changed mentally. I have always been a very anxious person. Every little thing I over-analyze and think the worst. Now, any slight feeling in my body I have to stop and think if Ive ever felt that before and if its normal.
I have gone back to work, but I'm still nervous to be there.
What has really messed with me mentally is the whole no driving thing. I am 21 years old. I have had my license for about 5 years. My freedom has been taken from me. It also doesn't help that I have no friends that I hang out with here in North Carolina. Im from Long Island and all of my friends are still there.
I am going crazy. I can't drive anywhere. I can't drive to work, I can't drive to the bank, or to the store, or just go for a joy ride.
My freedom is gone. This war inside my head is so tiring. I need to breathe. I need a change. I need to DRIVE.
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Job in jeopardy?
I need to take a step back.
Breathe. Breathe. Breathe.
Going back to work in important, but being mentally ready to go back is as well.
Am I ready? When will I be? What will help prepare me?
I think I need to wait it out and see my neurologist again for my EEG test so I can get some potential peace of mind.
Will my boss mind if I wait that long? Will I have a job at the end of this? Am I asking for to much?
I am willing to help and do things from my home, but to physically be there is really scary to me right now.
HELP ME. How can I fix this.
This seizure couldn't have happened to a more paranoid person.
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Life goes on.
I am terrified to go back to work.
My seizure happened at work. Im not saying it will happen again at work, but the chance still being there is so scary to me.
I have always been a home body and when I moved from Long Island to North Carolina it was really hard for me to go out and explore and get a job.
I have always loved working with kids. I am the 3rd child out of 6 and there is a 6 year age gap between me and the next set of 3 siblings. I have just been surrounded by younger kids for forever and always helped my mom with the babies.
Ive babysat ever since I can remember. I volunteered at my church daycare, I nannied right out of high school and I have always just babysat for everyone.
When I moved, I didn't get a job right away because we were constantly going from NC to LI all the time. My dads friend who he knew from the NYPD had retired and moved to our town in NC and he brought his child to this daycare/preschool and knew I loved children and they were looking to hire so he recommended I go there.
I went and applied in December and basically left with the job but I asked that I not start until January because we were constantly going back and forth. I started and instantly loved it. I started with small hours and now, a year and 4 months later I'm the manager. My boss is like an aunt, she is family. I love her. She held me during my seizure. She stayed with my dad mom and I at the hospital.
I am allowed to go back to work but I have limitations. I can not be a lone with the children and I can not pick them up.
My boss is willing to let me do just behind the computer stuff and only come in 4 hours once a week.
Why am I SO SCARED? I need to get past this. Someone please give me advice ASAP.
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Seizure girl.
Thursday May 18th, 2017.
All day I felt super spacey. Im looking at you, but I totally forget what we are talking about. Im at work all day. I work at a drop in play facility (daycare) Around 4:05 PM, I’m clocking a family out and everything goes black.
“You had a seizure you are okay you had a seizure.”
Black again.
I’m on an ambulance and I see my dad walk on.
“I’m right here Katie, your’e okay don't worry I’m right behind you.”
Spacey moment’s from that ride. My tongue hurt really bad. I bit it up pretty badly.
Black again.
I’m in the hospital and my mom dad and my boss are there. I have an i.v. in my arm & I feel like I can sleep at any second.
I was severally dehydrated, but that didn't cause my seizure. I need a cat scan. I have 5+ earring on both ears. You can't wear those when you have a cat scan. All of them come out.
I get the cat scan and get wheeled back to my room. I wait about 10 minutes for the results.
Results are in: All clear.
Why did I have this seizure? So many questions. No answers.
I’m released and go home. My mom stops and gets me ice cream for my tongue. It is cut up badly. I go home to my puppies and siblings.
My phone has a million text. “I’m okay” I say and turn it off. This is hard to process. I just had a seizure at work. I just had a seizure.
Will I ever have another one? I’m tired.
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