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I Have Epilepsy

Personal Stories, Advice, and Support 403 People

    Its How You Look At It...

    I was diagnosed with Epilepsy when I was 4y/o, 25 years, a quarter of a century my life has been effected by a disease, disorder invisible to the unknowing eye.It all started with petit mal seizures, my family still joke about how before I was diagnosed they thought I was just...
    crazedfilth crazedfilth 26-30, F 1 Response Nov 6, 2011

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    What's the Secret to Living Alone With Seizures?

    I began having seizures 3 years ago, at age 39. I have not successfully lived alone since.  I have tried, but I have burned myself a few times, left things unattended and injured myself. I don't drive but have had incidents walking alone as well.  What is the...
    donnny1 donnny1 36-40 14 Responses Apr 13, 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 was diagnosed with epilepsy

    when I was fifteen. Almost 3yrs ago. All of them are gm seizures. I take 2 medications to support it. I don't love it, but I have to live with it. I love getting questions about my experiences with it and many others. I still need testing to know my trigger(s) and we think it's...
    SurpriseMeToday SurpriseMeToday 18-21, F 2 Responses Mar 17

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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

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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

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    gcqldozz gcqldozz 41-45, M Feb 15

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    I'm Ryan, and I have epilepsy.

    On September of 2005 I had my first seizure and it was a big one ( grand maul seizure ). Early that night around 4:00 am I had a grand maul seizure which made me fall of the hotel room bed into the floor, my dad thought I was having a heart attack or was dying but it was a...
    ryanthelion101 ryanthelion101 18-21, M 1 Response Mar 31

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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 18-21, F 4 Responses Feb 12

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    I'm very unfortunate to have epilepsy I wasn't

    born with it just came in my late teen age years. I did play a lot of video games and then I through away my ps3 because of it and now I can't play video games anymore. Thank goodness I have other hobbies other wise I wouldn't know what I'd do
    JonnyBurrows10 JonnyBurrows10 18-21, M 2 Responses Dec 2, 2013

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    Misguided deliverance attempts.

    When the doctors refused to help me, I allowed other people to try - with disastrous results. In some cases I didn't actually allow it, but rather protested - to little avail. Nothing wrong (IMO) with praying for people and getting rid of evil spirits (in cases where they are...
    Buckley4U Buckley4U 36-40, F 3 Responses Apr 7

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    There was this one time I was going down stairs

    in my old apartment and in the living room there was this really really big cockroach. This thing freaked me out I was in so much shock. I told my mom don't you see that and she stayed Ali there's nothing on the coach. And I feel to the floor crying and shes yelling get up. When...
    Moonspear Moonspear 18-21, F Feb 10

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    On the 4th of April in 2014 I was on my way to

    my brother's house from my grandma Ann's. I had just stepped onto her back porch when I collapsed and went into a grand mal (Clonic Tonic) seizure. My head and one arm went through the railing. Not knowing what to do my 80 yr old grandmother called my birth mom who was in...
    tig1991 tig1991 22-25, F 4 Responses Apr 7

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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 41-45, F 1 Response Mar 25, 2012

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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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    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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    Does anyone else freak out

    after a seizure? I have grand-mal seizures, and even though medication (trileptal) helps, I still have one about every six months. Every time I have a seizure, I lose about half the day's memory too. Sometimes I remember up until the seizure, sometimes I don't. I will never get...
    ezpz2020 ezpz2020 18-21 6 Responses Feb 2

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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 13-15, F 4 Responses Apr 5

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    The weirdest place I've had a seizure was at a

    San Jose Sharks Game, and I still stayed for the rest of the game.
    zombiehunter120695 zombiehunter120695 18-21, M Feb 1

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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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    This is exactly what happens to me

    and gets mis-labelled as 'anxiety' or whatever. http://www.bcepilepsy.com/files/Information_Sheets/All_About_Partial_Seizures.pdf All About Partial Seizures When most people think of epilepsy, they think of t he kind of seizure that causes loss of consciousness, falls, and [j...
    Buckley4U Buckley4U 36-40, F 1 Response Apr 7

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    Hi guys I was at school today

    and I am writing a speech for my English class its about Epilepsy. I wanted to talk about what I been threw to the class. The teacher made me change my speech a little tho she didn't think it was important sense when is a medical illness not important. Anyway its still on...
    Moonspear Moonspear 18-21, F 2 Responses Feb 10

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    silentwriter180 silentwriter180 41-45, F Nov 1, 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 1 Response Mar 14

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    I know this is very controversial,

    but I want to share a few things about exorcism / deliverance ministry with regard to epilepsy / seizure disorders. As a Christian I do acknowledge that sickness in general (and sometimes specifically) is from the brokenness of the world and sometimes from the devil or his...
    Buckley4U Buckley4U 36-40, F Apr 7

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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 1 Response Dec 31, 2012

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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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    When I lived up north we had a big house

    so one time I was getting ready to take a shower and all. Of a sudden I felt weired. Like something was watching me so I kinds tryed to just prush it off. Then when I turned around I saw a fluffy in the bathroom on the shower had I got so scared I ran out of the bathroom to my...
    Moonspear Moonspear 18-21, F 1 Response Feb 9

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    Leaving Reality

    I developed epilepsy from a head injury I got caught underneath a young horse that I was looking to buy and train. The horse panicked after so kids came running out of a bush carrying shovels. I dont ever blame the horse, he was just 3 years old. My seizures...
    FastLaneC3 FastLaneC3 18-21, F 5 Responses Mar 21, 2009

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    Never Changing

    I was diagnosed with epilepsy at age 6. I am 39 now. I have never gone a day seizure free, and its very unlikely that I will. My seizures are really hard to describe. I cannot even get my neur to understand. I have absence, tonic clonic. But my absence I will have about 20-50 a...
    mrcrackers mrcrackers 36-40 Sep 17, 2013

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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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    hi i'm ali and i have epilepsy i don't have it

    as bad as others do but sometimes it gets in the way like i threw my pencil by accident up onto the school ceiling cause i flap my hands ....pencils still there.
    Moonspear Moonspear 18-21, F 2 Responses Feb 8

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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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    Every year at this time,

    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 is an important week for us, in that today, March 22nd, is a National March for Epilepsy in Washington DC. Unfortunately, I cannot...
    silentwriter180 silentwriter180 41-45, F 1 Response Mar 22

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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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    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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    My friend called me because she was depressed

    and suicidal- I had a seizure while on the phone with her- that didn't help her at all, what horrible timing.
    itskismet itskismet 41-45, F 2 Responses Mar 25

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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 18-21, F 2 Responses Jan 5

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    Amazing And Emotional Youtube Video!!!!

    Hey here's a youtube link that I found 7 months ago. It's for all those who struggle w/ epilepsy. I OWN NOTHING! It's amazing and beautiful. You guys should watch it. http://m.youtube.com/watch?feature=g-like&v=8ybATFhyQB8 Tell me your thoughts. Spread the link for others who...
    Alisaperne6446 Alisaperne6446 18-21, F Aug 3, 2013

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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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    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

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    I've had it since I was 8.

    Its familial. Typically its been VERY easy to control with medicine. I had a string of seizures a few months ago but its whatever. I've always thought of myself as a normal 19 year old who HAPPENS to have epilepsy; I don't tell anyone I have it because I know I'll be treated...
    ChloeCat19 ChloeCat19 18-21, F 1 Response 2 days ago

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    http://www.bcepilepsy.

    com/files/Information_Sheets/All_About_Partial_Seizures.pdf This is a pretty comprehensive description, along with suggestions on how to handle situations where other people have seizures. What I find interesting and difficult is the prejudice and misdiagnosis that frequently...
    Buckley4U Buckley4U 36-40, F 1 Response Apr 7

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    When I was in 5th grade,

    I was diagnosed with epilepsy. It was during spring break on Easter and on my friends birthday. I was at the beach house and all was great. I woke up one morning and decided to check how much memory was left on my SD card. When I turned the device on I was looking at the screen...
    zombiehunter120695 zombiehunter120695 18-21, M Jan 25

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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 41-45, F 2 Responses Oct 31, 2012

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    I Don't Let Grand Mal Seizures Change My Life.

    I had petit mal seizures for about 3 years when I was 4 but they randomly went away when I got sick and couldn't take my medicine anymore. Then when I was 14 I had my first Grand Mal, tonic clonic seizure. I'm not 19 and have had I think 9 grand mal seizures since then. When I...
    HesMyArmyHero HesMyArmyHero 22-25, F 6 Responses Mar 9, 2009

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    I'm 27 years old n have had my seizures

    since I was 5 years old. I have complex partial epilepsy. I feel like I'm alone with them even thou I have a wonderful support system. But I feel stuck.
    dewife2005 dewife2005 26-30, F 4 Responses Mar 18

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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

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    I'm 23. I had my first seizure

    when I was about 12. But since then I've just had other two seizures ...till last Saturday, when I had my forth seizure (even though I've been taking Keppra for four years now).. I thought I was finally ''saved'' or totally 'healthy' because my doctor always says that my...
    giuls318 giuls318 22-25, F 1 Response Feb 22

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    Today I got fed up and thought of over-dosing

    in chocoate so I can have the ultimate siezure that would put me in a coma. Strange thing is I'm not even a suicidal person :/
    InfoSyker InfoSyker 31-35, F 1 Response Feb 10

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    I've had epilepsy since I was 10.

    When it started it was only in my sleep and we thought I was just moving around a lot but I would frequently end up on the floor. Once I was told I was having seizure they blew out of control. I ended up in the hospital with 50+ seizures a day. They've changed drastically since...
    alittlemoresonic42 alittlemoresonic42 18-21, F 1 Response 4 days ago

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    I'm surprised how my younger cousins handle the

    fact I have this. It doesn't seems to bother them like it does most adults. Those kids are my rock.
    InfoSyker InfoSyker 31-35, F 3 Responses Feb 10

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    Related Experiences

    I don't actually have this as far as I know. But I definitely do have seizures, still trying to get a diagnosis, and I want to watch this group and find out what I can about PNES...
    Buckley4U Buckley4U 36-40, F 1 Response Apr 10

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    I'm 31 years old and have been battling back problems for the last 15 years. It used to come on just once in awhile, a little pain in the lower back, some tingling down my right...
    jeneral3015 jeneral3015 31-35, F 1 hr ago

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    To be completely honest, I denied it for some time. I haven't actually done any kind of official test, but I have a nurse practitioner and a number of knowledgeable individuals who...
    Kavka Kavka 18-21, M 4 hrs ago

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    HI , Im 24 years old , im a man . the thing about me is i am not quite sure if i have cauda Equina , i didnt have an accident or any truama , my pain first started at my right foot...
    Atrilundy Atrilundy 22-25, M 1 Response 1 hr ago

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