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I Have Epilepsy

Personal Stories, Advice, and Support 947 People

    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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    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 Feb 21

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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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    What Epilepsy Has Done For Me.

    Since a child, I have suffered in ways nearly unheard of. I have forgotten how to walk, sit, even breathe. It is like looking down a black hole and seeing yourself turned inside out. It is like a trap you set for yourself where you have to re assimilate every single bit of...
    amethystascension amethystascension 22-25, F 4 Responses Feb 15, 2011

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    My first epilepsy was

    when I was 13 and then again at 15. The pre-seizure would happen to lots of zoning out, and seeing some pretty colorful spots it's slowly speeds up that seems so memorizing and suddenly blackout. Passed out. At 13 I was on my way to school in a sedan that labeled as a school bus...
    signbrat04 signbrat04 22-25, F 3 Responses Jul 16, 2014

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    I've written in the section

    before how I was diagnosed following a car accident which left me very injured and diagnosed with epilepsy in five days it will be a year since the day I consider to have ruined my life happened. I lost my job as a community carer, my holiday to Greece(next day flight), my...
    Cozzx Cozzx 18-21, F 2 Responses Jul 8, 2014

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    What about the rapid twitching at the corner of

    my eye, sometimes I can feel it twitching real fast like a flutter but you don't notice it visually. I wonder if that is related to some kind of seizure activity or my epilepsy.
    subsumedpat subsumedpat 36-40, M 3 Responses Jul 11, 2014

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    Okay everyone. I created this just to get to

    know others who have epilepsy/seizures, and/or have loved ones with this. I want to get the word out. I want to make a difference. I want to be here for those who have this and answer any questions for everyone. I may not know all the answers, but I will try my best!! First...
    maggiequern maggiequern 22-25, F 2 Responses May 13, 2014

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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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    Don't make any mental illness you have out you

    down adapt to it and change your lifestyle that way any illness will be far easier to live with OOHHH YEEEAAAHHH!!!
    JonnyBurrows10 JonnyBurrows10 18-21, M 4 Responses Mar 18, 2014

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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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    I want to share the post I just added under the

    category I Self Medicate.' It deals with some of the difficulties of getting appropriate medication for a formerly unacknowledged seizure condition, and self=medicating in order to function. Here's the link: EP Link
    GreenButtercup GreenButtercup 36-40, F 1 Response Aug 2, 2014

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    Me to Drs. Don't know why

    or what caused me by having epilepsy but I have been clear for 1 month of them and I'm kind of. Proud of myself for that
    jannyjane jannyjane 18-21, F 2 Responses Jan 3

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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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    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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    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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    MipetKari MipetKari 46-50, M 1 Response Dec 27, 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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    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 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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    Epilepsy and Me

      I started having fits  when I was 11 years old. I was having  grand mal seizures about once every three months. I would just fall and shake without any warning. At the time it wasn't that big a deal, yeah it was confusing and the amount of injuries I had was...
    Supertardisbabe Supertardisbabe 31-35, F 3 Responses Mar 29, 2008

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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 2 Responses Mar 14, 2014

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    As a Child

     I  havent had a seizure in yrs ... But i remember how much it controlled my life . I had to take medicine everyday twice a day , i couldnt go through haunted houses , I was told i would never be able to drive , so many things that it limited . But its been a long time...
    starstruck2xtrme starstruck2xtrme 26-30, F 1 Response Jan 9, 2008

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     Its been about three months

    since my last seizure. I'm expecting another one soon. I normally have them about every three months now. There has only been one time where I actually went five months without a seizure. When I was younger I would have about fifteen over a two month span.Right I'm working...
    Alisaperne6446 Alisaperne6446 18-21, F 1 Response Nov 12, 2014

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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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    I hate it,just been on E.

    R. this morning,cause of epy seizurre,got a shot against seizurres and infusion with vitamins B1 and B6 in it,layed in hospital bed,listened to an old lady complaining for more then an hour..... i always have seiuzures and i hate them the worse is when they happen publicly and i...
    00pleasehelpme00 00pleasehelpme00 18-21 3 Responses Oct 30, 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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    I wish I wasn't treated like a child.

    I'm 19. I have had epilepsy since I was 10. My mother still treats me like a child just b/c I have epilepsy. It's an argument every time just to get her to understand that just b/c I have epilepsy doesn't mean I can't take care of myself. What's worse is that she treats my...
    Alisaperne6446 Alisaperne6446 18-21, F 3 Responses Jan 16, 2014

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    March 26, Purple Day

    Hey, my friends, don't forget to wear purple tomorrow. This is our day!! Here's what I posted on my wall, feel free to paste and copy it onto your whiteboard as well. March 26th is Global Day of Epilepsy Awareness. Purple Day was founded in 2008, by nine-year-old Cassidy...
    silentwriter180 silentwriter180 46-50, F 1 Response Mar 25, 2012

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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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    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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    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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    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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    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'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 4 Responses Jan 5, 2014

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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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    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 1 Response Feb 19

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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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    Epilepsy & Me

    My name is Tracy and I'm a 29 year old mother of 2 from Melbourne, Australia. I had my first seizure at 25 while at work. I awoke alone, nauseous and all post-ictal and confused and couldn't remember anyone's phone number or anything so all I could do was call an ambulance. They...
    RiffRaffMama RiffRaffMama 26-30 1 Response Jan 11, 2009

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    I Have Epilepsy/and New to This Group

    Hi everyone,My names Jessica I'm 18 years old and have had epilepsy since I was 14.My first seizure I ever had was a gran-mal in my school's library.It was the scarriest thing that has ever happened to me.Before I had the seizure I felt strange kind of like you were stuck in time...
    jesstuckintime jesstuckintime 18-21 5 Responses Dec 28, 2008

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    I have grand mal seizures

    and sometimes feel like I'm going to have a seizure but don't almost every day it's a living hell
    akumaumi akumaumi 18-21, M 1 Response Oct 24, 2014

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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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    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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    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 3 Responses Nov 23, 2014

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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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    I have suffered from epilepsy

    since the age of five. It's mostly the ignorance of others that I suffer from. I'm an accounting major. I stopped listening to family members who want to treat me like a retard or crazy person, so they can join a support group. Basically, if you don't believe in yourself...
    Riverlioness Riverlioness 41-45, F 3 Responses Oct 31, 2014