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I Have Epilepsy

Personal Stories, Advice, and Support 1,215 People

    My Epilepsy

    I never knew I had epilepsy till I was 42, and I tore my shoulder out in my sleep. Often wonder was that a seizure? Have eaten my tongue plenty of times, and even the inside of my cheek. Which I took was from a nightmare. Apparently I have had epilepsy all my life, part of my...
    cyclemania cyclemania 51-55, M 1 Response Mar 30, 2013

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    I really hate taking my medicine it me makes

    feel depressed, irritated, tired, (and ironically I almost forgot this one as I was writing this) it makes me forgetful. I hate being reminded to take it. But it works and none of the other medicines I tried before worked or had much better side effects. I have actually spanned...
    Alisaperne6446 Alisaperne6446 18-21, F 2 Responses Mar 20, 2014

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    Currently taking Keppra (levetiracetam)

    and feeling very on edge. I'm usually pretty much in control of my emotions so feeling like this is ... a little freaking me out
    samhill100 samhill100 41-45, M 4 Responses Nov 23, 2014

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    Epilepsy Gone Wild

    When I was in the 3rd grade I was diagnosed with partial seizures. Several years passed and once 2008 hit I was diagnosed with generalized seizures as well. In 2008 alone I had well over 100 and missed 3 months of my senior yr of high school. I had broke my upper jaw and had many...
    tig1991 tig1991 22-25, F 3 Responses Dec 31, 2012

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    I had a stomach infection,

    was prescribed medicine that contained Flagyl....within a week of me taking the meds I had my 1st seizure.....stopped the meds and had another one a week after that.... I am now labeled epileptic and on Keppra for life!! Flagyl causes seizures in people but doctors prescribe it...
    MonaTy MonaTy 46-50, F 2 Responses Jan 4

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    I have had epilepsy for almost 10 years.

    Since I was 6 years old. I have suffered from many tonic-clonic seizures & the cause of the first one was unknown. Luckily, I haven't had a major seizure for almost 4 years. I do suffer from frequent "absence" seizures which I suffer from daily. I have been put on countless...
    KMargatroid KMargatroid 16-17, F 6 Responses Jul 4, 2014

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    The Pain of Having Epilepsy

    I am so thankful for experience project so no one can see my tears while I tell my story. I experienced my first seizure when I was about 7 years old. My step dad had picked me up by my throat, threw me across the room and my head hit my hard wood toy box. I woke up...
    freebird79 freebird79 26-30, F 9 Responses Mar 25, 2009

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    How My Life As An Epileptic Began..

    I'm fifteen years old almost 16. I was diagnosed with epilepsy in april of 2012. I was out with my sister at walmarts redbox and had my first seizure. I was responding and was able to get up and walk but i was totally out of my mind. When my sister took me home my mom rushed me...
    sweetgirl15 sweetgirl15 16-17, F Oct 24, 2013

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    med; levels spike. today was bad day,

    once things got going I knew what was wrong. my Dilantin level was too high. I was drunk most of day. this has happened before so I skipped couple doses. this is what er would have told me if a neuro was there and he knew a little about me. what my neuro has had me do in past...
    Scott1954 Scott1954 56-60, M 1 Response Jan 27

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    Who in this group has a MONITORED EEG?

    Key word MONITORED. That is the ONLY way to asure of having a seizure episode recorded so your doctor can see where the seizures arise from. A monitored EEG is a major pain in your butt. They will wire you up like any EEG. They will put you in a bed with blue sheets. The blue...
    Scott1954 Scott1954 56-60, M 3 Responses Jan 22

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    Also, my neurologist never found on me anything

    that can be causing me to have seizures. I always get aura it's like a warning that I might start getting seizures. After my seizures I don't remember anything and I'm tired and with a real bad headache
    abi805 abi805 22-25, F 6 Responses Mar 11

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    since Wednesday night I experienced a seizure

    in the shower. normally I suffer grand mal seizures, drop fall and go unconcious but this seizure was scary. I didnt drop. I didnt fall and I didnt loose consciousness. the feeling of it though was sooo scary and since then I've been having seizures every day, all day until now...
    fOrEvErYoURs321 fOrEvErYoURs321 26-30, F 4 Responses Mar 11

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    thatonegirl156 thatonegirl156 16-17, F Dec 26, 2014

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    All I want is to try

    and decrease my dose but every time I see the neurologist they increase it. I have another appointment in two months but I don't want to go.
    niraken niraken 26-30, F 4 Responses Jan 13

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    Will you wear purple

    for me, for us? It's that time of year again when I reach out to my friends and family in hopes that support will show for not only myself, but for others who face the challenges of Epilepsy. This coming Thursday, March 26th is Purple Day, on which we wear purple in support...
    silentwriter180 silentwriter180 46-50, F 5 Responses Mar 22

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    Hi to everyone EP.I go by Fruitypunch15 on here.

    I am looking to make friends on here.I am looking for friends that have Epilepsy too.I am tired of explaining to people that dont understand anything about it.And I would like people around my age to talk to.I am looking for new friends that have Epilepsy too.So we can exchange...
    Fruitypunch15 Fruitypunch15 31-35 2 Responses Apr 7

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    I've had it all my life.

    It started with just me getting dizzy and having to sit down or else fall down. Then, it went to me blacking out for short bursts. And then, it went to me walking around without knowing what was going on for extended periods of time. I was having absence seizures. It wasn't...
    bard66 bard66 18-21, F 3 Responses Jan 5, 2014

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    I Was 33 And Pregnant When I Found Out...

    I recently learned I have epilepsy. I've had memory problems and small bouts of mental freeze my whole life. My mother never took me to a doctor because she was too busy getting sympathy from everyone around her for having 'such a stupid daughter'. They happened so often that I...
    SilkCherie SilkCherie 36-40, F 1 Response Nov 14, 2011

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    MipetKari MipetKari 46-50, M 1 Response Dec 27, 2014

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    My epilepsy experience began

    when I was 18. My life hasn't been the same since. I lost my driving license, my confidence, and for a while my freedom. This October will be 4 years since my diagnosis and the road has been bumpy. I have had seizure control since August 2013 but the cruel condition has that...
    AmyTurtle92 AmyTurtle92 22-25, F 1 Response Jan 5, 2014

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    Today is one of my bad days.

    it's one of those days I consider what would be would death by suicide and spend eternity in hell or b epileptic.
    majk97 majk97 16-17, F 2 Responses Dec 20, 2014

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    I have had Epilepsy since I was 10 months old

    the doctors are not sure how I got it since it does not run in my family. And they can't find a reason why I have it. I had 8 a day till I was about 10 when they finally got it under control with depakote 500mg capsules 2 in the morning and 2 in the evening, but when I was 17...
    kmccrady12653 kmccrady12653 18-21, F 1 Response Mar 27

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    I have a rare form of epilepsy

    that the doctors don't even know what to call it? I hate not knowing why I suffer seizures and I hate not having any answers or why the so called specialists can't tell me why...
    fOrEvErYoURs321 fOrEvErYoURs321 26-30, F 4 Responses Dec 26, 2014

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    I have about two seizures a week,

    and that's if I sleep well. Mine seem to happen if I had next to no sleep, or wake up throughout the night. I've been re-diagnosed with epilepsy nearly dozens of times in the space of two years. Now I'm back to no medication and it does worry me sometimes. Untreated epileptic...
    Bobbiin Bobbiin 18-21, F 2 Responses Mar 18

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    I'm Not Fragile

    Most people think this when I tell them about my Epilepsy. I will not break if you touch me. I will not have a seizure if you touch me or talk to me. They can be a little scary but you will get used to them after awhile. I did, though sometimes I can be completely fearful of...
    ZappedToTheUnicorn ZappedToTheUnicorn 22-25, F 4 Responses Sep 28, 2012

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    I'm tired of being accused of not taking my

    medicine every time I have a seizure. I have epilepsy! Just because I have a seizure doesn't mean I haven't taken my medicine! They aren't even that close, they're at least normally 2 or 3 months apart.
    Alisaperne6446 Alisaperne6446 18-21, F 3 Responses Jun 15, 2014

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    i was bus to the hospital friday night my

    boyfriend came home and found me unconscious on the floor when i get to the dr my blood pressure was 90 over 47 they have me taking 800 milligram of them i am a day now i am so sick of taking medicines now nothing seems to be working apply for my disability 3 years ago because...
    meemee09 meemee09 36-40, F 1 Response Dec 10, 2014

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    Sometimes it gets me down

    that people can't think I can't function because of it. Like it it's my life I won't be able to escape
    majk97 majk97 16-17, F Dec 14, 2014

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    Warning: This is pretty long!

    I had my first proper seizure on the 26th March 2007 and I was diagnosed with Juvenile Myoclonic epilepsy. Literally the biggest shock of my life and obviously had the denial phase of 'I can't have epilepsy, I've never had a fit before and I don't drop to the floor and lights...
    twiggy93 twiggy93 22-25, F 4 Responses Feb 12, 2014

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    When I was 11(An estimate.

    it was after my 6th grade year was done) I was diagnosed with Epilepsy. For three years I was on a medication that failed every three months and each time I had a breakout seizure my dosage would be adjusted. During 8th grade on February 24th(I remember the date) I had 4...
    Showjumper1 Showjumper1 18-21, F 2 Responses Nov 30, 2014

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    So I get to go to the neurologist tomorrow to

    go see about getting on some new medication because my seizures have kind of been out of control lately and it really scares me because I'm still trying to figure it out and stuff I haven't known about it for very long and usually when I have them I have memory problems for a...
    BroadwayBound2014 BroadwayBound2014 18-21, F 4 Responses Dec 2, 2014

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    Myepilepsy.com

    In the Beginning There have always been people with epilepsy. Since the dawn of time, epilepsy has affected millions of people, from beggars to kings. It is one of the oldest conditions of the human race with a rich and distinguished history. The earliest references to epilepsy...
    amethystascension amethystascension 22-25, F 7 Responses Feb 7, 2011

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    Hello I'm Red. I have Tonic Clonic

    and Absent seizures. It is scary to have seizures and it hurts. I shake and shake and groan and my eyes turn completely white. I try to close my mouth but I can't it goes far out like a scary movie and my back twist up. It is like sleeping but when you wake up it is different. I...
    RedtheEmerald RedtheEmerald 22-25, F 6 Responses Apr 5, 2014

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    I've been living with seizures

    for 20 years and they didn't find anything that can be causing me to get seizures
    abi805 abi805 22-25, F 5 Responses Mar 1

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    College.

    Growing up, I heard stories about college. I'm sure you've heard the same, or at least similar. Stories of how enriching an experience college can be for a person. Stories from my parents about how they first met in college. Stories from a favorite uncle about some of the crazy...
    Shiaten Shiaten 18-21, M 3 Responses Aug 29, 2010

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    I first began having seizures

    when I was very little; around the time I was born. After that I was fine, till I was 13 or maybe 14, when I had three seizures; the first being when I was in school doing P.E. It was quite scary, knowing that there was something wrong with me. After the three seizures, I didn't...
    henal216 henal216 18-21, F 4 Responses Dec 19, 2014

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    Born An Epileptic.

    I have my first seizure when i was 3 months old and I basically grew up with it. it started when I had febrile seizures and it left some scarring or damage to my brain, i don't remember exactly what it was it did because I was only a baby. it makes me mad because the meds effect...
    deleted deleted 26-30 6 Responses Jun 28, 2011

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    Does anyone else deal with getting bullied

    because of epilepsy and the side effect of hands shaking, because of my medication my hands are shaky and everyone notices and I always get made fun of for it and then if you have a seizure in front of people the bullying gets even worse.
    kmccrady12653 kmccrady12653 18-21, F 6 Responses Mar 29

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    I've been diagnosed and taking meds.

    .. IT ******* SUCKS!!!!!!!!!!!!!!!!
    SurpriseMeToday SurpriseMeToday 18-21, F 4 Responses Nov 13, 2014

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    Won't ever forgot the diagnose.

    .. Blew me into submission. The worst part the meds can't prevent the seizures...and that as well the meds havee effects which are screwing me up... A seizure is a major fear in my life and although I have accepted it all for the last 5yrs...I still feel I am fighting a losing...
    ThevoiceofOutcasts ThevoiceofOutcasts 18-21 2 Responses Jul 1, 2014

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    goku0284 goku0284 26-30, M 1 Response Mar 9

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    After having a seizure a few days ago

    and coming out of it realising I was so close to cracking my head open from the impact of the fall you would think people would have a level of empathy or sympathy to not attack and bully individuals with the condition. It is very serious and has changed my life forever, how do...
    sammimel sammimel 18-21, F 1 Response Feb 21

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    Since I was 8 or 9 years old.

    I'd have these strange feelings of being alone. It did not matter how many people were around, I was isolated from them. It was not scary just freaky. When I was 11 or 12 I had my first complex partial; freaked my mother out. It was a Friday night; back then doctors had Saturday...
    Scott1954 Scott1954 56-60, M Jan 12

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    I was diagnosed with epilepsy 5 years ago.

    However, it is still a very touchy subject. I believe it is still very touchy with me because of my age when being diagnosed many people didn't understand seizures and the bullying that goes along with such visual medical conditions. I cannot stand hearing the word or telling...
    sammimel sammimel 18-21, F 3 Responses Feb 19

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    Doctor Visit 10.31.12

    Went for my annual doctor visit to see my neurologist today. Was a better visit than I had expected. The last couple of visits were difficult to swallow as they didn't really do anything. All I did was give him a report of my seizures for his records. He didn't want to change my...
    silentwriter180 silentwriter180 46-50, F 2 Responses Oct 31, 2012

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    THIS IS LONG. I'm going to make a youtube video

    about Epilepsy with a bunch of facts and such so I thought I'd write my experience down to get my thoughts in order. (If anyone would like to comment and tell me what their seizures feel like and about their story it would be greatly appreciated.) First, I want to say what my...
    boklenHolley7 boklenHolley7 16-17, F 3 Responses Mar 14, 2014

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