My Reality

This is my Life.

        I have been living with Epilepsy for 5 years. It gets easier I suppose. It is never “easy” per say but you meet people; inspiring people..and sometimes you are able to give that back. Sometimes you educate; which I strongly believe in. Many people I have met get worried or afraid for me when I tell them I have Epilepsy. Some people start treating me like I am a child who cannot do anything on their own. Then there are some people who avoid it all together like it does not exist. Get to know us. Get to know me.
       2011 is when it began. My first seizure was known as a grand mal or a tonic-clonic seizure. What this means is, yes this is your “classic” seizure. I blank out, scream, fall, and shake. They usually last, for me that is, around 3-5 minutes. Yes, I bite my tongue – please do not put anything in my mouth. I have actually bitten off a small piece of my tongue in the past…and again recently. I will go through my postictal phase where I will respond and answer you normally but will not recall it at all. This actually tricked a nurse once and I ended up in a medicine induced sleep for 12 hours along with a repeat seizure. Eventually, I will consciously come back, but I wont remember your name or how I got there. I wont remember anything prior to the event until the next day. I will never remember what happened immediately before or during the event. That is the basic run down.
       Back to 2011, my seizures were not properly control. I was having multiple tonic-clonic seizures a month. I was given this wonderful (using wonderful loosely) medication called Keppra or more commonly written as levetiracetam. I say wonderful because yes it is wonderful for women of a reproductive age. It does not effect your fertility as harshly and better on pregnancy (I have birthed two children while on Keppra, we will talk about that later) than other anticonvulsants. But, as any other medication, there are side effects. For me, it made me incredibly sleepy. I have to nap now and then. It also screws with my mood – I go through really low depressive funks and some days I am perfectly happy and go lucky. It makes me incredibly irritable – I literally yelled at a stranger in Stop and Shop which I would never do otherwise because that is extremely rude. I get angry for no real reason at my poor boyfriend – bless his soul. I also feel it slowed me down with school. Reading and focusing became difficult and my comprehension sucked in comparison to before. It also became harder to recall information. I actually weaned myself off of Keppra because I hated how it made me feel and then my seizures came right back. Time to find alternative coping mechanisms.
       Some studies and people claim that vitamin B6 is supposed to help with the emotional/psychological side effects. I never tried it before but I am now and will update if I find that it works – so far no but it has only been 3 days. My neurologist actually mentioned it before I had a chance too so this might be a plausible tool. I have always taken folic acid with Keppra because it helps fertility wise and to keep the baby safe from neurotube defects – which it successfully did so for my girls.  I also started fish oil this time around to promote brain health. 
        Back to basic history, after my first neurologist completely overdosed me on Keppra and I could literally not remember the day before or how to do basic tasks and found a second neurologist – Keppra worked for my seizures. Until I got pregnant then I would have a seizure immediately before I found out and after the pregnancy when my hormone levels dropped. When I decided to start going back to school in 2013, I weaned myself off because I felt like I would not be able to keep up. I was officially off Keppra at some point in 2014-2015 and slowly the seizures came back but as nocturnal ones – still involved tongue biting. Then I started to get really worried after my first “typical” seizure for me occurred. 
        My children were in the bathtub, I was bathing them. Can you guess? I had a seizure. I could not remember even giving them a bath. Luckily I was at my parents and after a while they thought it was strange I was not coming out and it got oddly quiet. No one knew how long I was out for and thank goodness my girls were okay. This is my reality and now theirs.
    I tried making an appointment with my neurologist but when it rains, it pours. I could not get in with him and I also apparently owed them money because they misfiled a bill with my insurance and did not want to listen to me or my mom and I did not have money to pay. So I decided to take it easy and hope this was just a fluke. Then my recent one happened after a few more questionable nocturnal seizures.
    I drove my car into a brick chimney attached to someone’s house – essentially a brick wall. I had a seizure behind the wheel, thankfully kids not inside, and crashed. I could of very easily lost my life that day, but someone is clearly looking out over me. I do not remember the events leading up, do not remember the crash, and woke up in an ambulance confused before passing back out again and waking up in a hospital. Now my oldest is afraid to leave me alone, she will not sleep on her own, I had to drop some classes, I can no longer graduate this year, and aspects of my life are now in limbo. This is my reality.
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                                  (Photo Credit: https://pennspeaksforepilepsy.wordpress.com/2011/11/02/epilepsy-awareness-month/)

Please feel free to introduce your self and share your stories whether it is of yourself or a loved one! The only was to raise awareness is by making conversation! 

32 comments

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    • Samantha says:

      Haha, thank you! I can only wish to one day be well-known but as for now, I am just a single person trying to educate other on Epilepsy 🙂 Glad you enjoyed my post! Feel free to spread the word and have a wonderful week!

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      Awee, thank you so much! Writing has always been one of my “secret” passions and I decided to try and use it in the most beneficial way that I can. I am so glad you have enjoyed my page and hope to see you again soon!

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  9. Simone says:

    Hi Samantha,
    I’m sorry if I’m writing here, but I couldn’t find any e-mail address to use!
    I’m the webmaster of an Italian Regional Organization about epilepsy called AEER (Associazione Epilessia Emilia Romagna) who is organizing a small project that i”m going to explain to you, hoping you may want to take part.
    You may visit the AEER website at http://www.associazioneepilessia.it. Now it’s only in Italian, we hope in the next future to provide also an English version of the site.

    This project will start in April and it is completely dedicated to all the people who suffer from epilepsy and to all those social issues that people with epilepsy is forced to face daily. The project is about a monthly publication of a piece of text (a tale, a witness, a poem, an interview, an article, a reflexion or whatever else) dealing with a specific topic related to epilepsy and everyday life. It could be for instance “Epilepsy and pregnancy” or “Epilepsy and school” or “Epilepsy and art” etc.etc. Every month we decide a subject and if you accept you may publish a text to your blog dealing with that.

    There’s no condition at all! You are perfectly free, we only ask you to share your text with us by e-mail, so we can publish the same text to our web site in a specific area that we are preparing.

    Our website page displaying your work will contain 5 other texts written by 5 other bloggers dealing with the same topic.
    There are 6 blogs in total that we have involved in this project, listed at the end of this mail.

    Our aims is to create a network that binds us in a common purpose: make people talk about epilepsy and everything around that.

    This network will be easily consulted and accessed by searching for topics.

    Your work will be also translated in Italian.

    Of course, the page in our website containing your work will be also linking to your blog and we ask you to do the same by linking to that specific page containing your work in AEER website.

    So we’d like to have 6 publications every month by 6 blogs.

    it could be very interesting because the topic will be treated in 6 different ways!

    Every month, when all works are posted, we will give you the subject for the month after, so there will be enough time to write the next text.

    3 bloggers involved have already agreed to participate to this project, now we are asking you to do the same.

    Here are the bloggers we have asked to participate:

    https://findingfreedomwithepilepsy.wordpress.com/about/
    http://thestorminsidemyhead.com/
    http://fairyfaye1986.weebly.com/about-me.html
    http://epilessialiviocaiulo.myblog.it/
    https://medium.com/@uomomagnetico
    https://pianeta1p36.wordpress.com/

    I’m sorry for my English, I hope I’ve made you understand our aims and please ask everything is not clear

    Simone Negrini
    Webmaster AEER – Associazione Epilessia Emilia Romagna
    Bologna – Italia
    http://www.associazioneepilessia.it

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