Post
Experience Project iOS Android Apps | Download EP for your Mobile Device

I Have Epilepsy

Personal Stories, Advice, and Support 2,598 People

    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 18-21, F 3 Responses Mar 14, 2014

    Your Response

    Cancel

    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

    Your Response

    Cancel

    I have JME (juvenile myoclonic epilepsy)

    and I have for nearly two years. The first one was at my friend's grandma's house. The second was when I was out for a walk, alone. I have had 3 EEGs (electroencephalogram) having a fourth next month. Only the first showed something. I have had 7 seizures in school in the past...
    reneeileenpeters reneeileenpeters 13-15, F 3 Responses Dec 26, 2015

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 10 Responses Mar 25, 2009

    Your Response

    Cancel

    Keep having life threatening tonic clonics.

    Going to the hospital soon to change meds. Hopefully it makes a difference. Even if I'm not cured, I'd be ok just having a couple a month like I used to so I can work again. And I'd love to have children.
    deleted deleted 26-30 3 Responses Jun 23, 2015

    Your Response

    Cancel

    Its true. I have Epilepsy.

    . I have a very minor version and usually seizures are barely noticeable (internal seizure) so it looks like i am spaced out in dream land when really i am actually fitting in my own mind and unable to function. Can last up to 3 minutes each time. It affects my work in some...
    CrystalSapphire CrystalSapphire 18-21, F 4 Responses May 26, 2015

    Your Response

    Cancel

    Im not too sure if you would call it epilepsy,

    but when im extremely exhausted i get involuntary twitches. Haven't had any for a very long time.
    redphoenix02 redphoenix02 26-30, F 3 Responses Jan 25

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 18-21, F 6 Responses Jul 4, 2014

    Your Response

    Cancel

    I was diagnosed with epilepsy

    when I was 7 years old so that was a pretty young age for me it scared my parents but I had no clue what was happening when I had them. I almost crashed a car when I was retaking my drivers test for drivers ed in high school and so that was scary
    xxemogirlxx xxemogirlxx 22-25, F 1 Response Jun 30, 2015

    Your Response

    Cancel

    Anyone with photosensitive epilepsy,

    I'd recommend wearing an eyepatch over one eye, it helps alot I've found
    EmilyBridge2187 EmilyBridge2187 16-17, F 1 Response Feb 1

    Your Response

    Cancel

    When I was 15 years old,

    was when I had my first epileptic seizure. It was one night when my parents had taken my brother and I on a summer holiday. We stayed at the Holiday Inn. After using the swimming pool I went to have a sauna. It wasn't until later that night while watching television I fainted...
    Sara600 Sara600 61-65, F 2 Responses Feb 1

    Your Response

    Cancel

    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 4 Responses Mar 22, 2015

    Your Response

    Cancel

    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

    Your Response

    Cancel

    I had a seizure last night :(,

    tonic clonic, as in my room on my bed foaming in my mouth
    deleted deleted 26-30 2 Responses Jan 11

    Your Response

    Cancel

    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

    Your Response

    Cancel

    I'm in the middle of surgical evaluation

    which means test on top of tests on top of test, my last MRI showed 1.4 cm right frontal cortical dysplasia in my right frontal lobe and my neurologist is pushing me to get a normal epilepsy surgery but I don't want to have my skull cut open so I'm trying to push this new...
    Leo2015 Leo2015 26-30, M Jan 17

    Your Response

    Cancel

    I have complex partial seizures

    and myoclonic seizures. Probably about 10 years now. I can't feel them coming on,but my latest one was last year. I was at the teller window at a bank, started to shake and seize,then went unconscious. At least the bank offered me water.:) lol.
    Chelsea1973 Chelsea1973 41-45, F 3 Responses Nov 16, 2015

    Your Response

    Cancel

    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

    Your Response

    Cancel

    I feel like it has ruined my life.

    .or a chance at one. I don't know if it's the meds or e itself, but it's impossible to retain information. Which means school or learning a trade is too hard. Not having a job, I feel worthless. I can't drive & have to rely on others. I don't have any friends or a chance at a...
    deleted deleted 26-30 3 Responses Jul 12, 2015

    Your Response

    Cancel

    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 22-25, F 6 Responses Mar 29, 2015

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    My partner said I should go to bed.

    He was right as I was obviously not doing well. It took me a long time to manage to get my phone, notebook and kindle together. It was a real struggle but there was no offer of help like there would have been in the past. I cleared an area of the clothes that were on the bed but...
    LittleRedShoes LittleRedShoes 36-40 1 Response Nov 21, 2015

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 8 Responses Mar 11, 2015

    Your Response

    Cancel

    I've had epilepsy since I was 4 to 5 years old

    and I am currently 29 my neurologist is suggesting the VNS the vagal nerve stimulator and I was wondering if anyone else has had any experience with this if they could give me their opinion on it?
    Leo2015 Leo2015 26-30, M 1 Response Jul 17, 2015

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 3 Responses Mar 25, 2012

    Your Response

    Cancel

    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 5 Responses Jan 16, 2014

    Your Response

    Cancel

    still having seizures is stopping me from

    driving and since the bus service is kinda useless here I either need to move to my folks, closer to work or find a new job.
    InfoSyker InfoSyker 31-35, F 2 Responses Aug 17, 2015

    Your Response

    Cancel

    Tell me if you have ADHD

    because my sister doesn't believe me that people born with ADHD are prone to having epilepsy when I told my sister this she called me a hypochondriac even though lately that's been her definition but again just tell me if you do have ADHD
    smitlord smitlord 16-17, M 1 Response Aug 18, 2015

    Your Response

    Cancel

    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

    Your Response

    Cancel

    I have always suffered from depression

    since my early twenties not a great upbringing problems with relationships Lo and behold I was 32 and I started having seizures I have had them 13 years I average 3-5 seizures a month I don't feel them coming on I have been taking lots of different tablets phenytoin keppra...
    defoekeane defoekeane 36-40, M Jul 12, 2015

    Your Response

    Cancel

    I suffer tonic clinic (grand mal) seizures

    weekly and freaky seizures daily since I was 13 years old. (I'm 26 now) doctors don't know why I am having these seizures, even on medication. (I went into cardiac arrest last year), finally this year, specialists agreed that I should do the trial to make seizures come to find...
    foReverYOURS3211 foReverYOURS3211 26-30, F 11 Responses Aug 17, 2015

    Your Response

    Cancel

    Well i had it i had a brain surgery ( actually

    two the first one was to place a grid to detect the exact location of my scar tissue and the second surgery was to remove my right temporal lobe which contained the scar tissue
    smitlord smitlord 16-17, M 1 Response Aug 8, 2015

    Your Response

    Cancel

    I have 3 seizures today

    after school in my room
    deleted deleted 26-30 Jan 15

    Your Response

    Cancel

    well i dont know how it came about ,

    i started hanging a around a freind with epilepsy who told me that i was having absence seizures, after a wile they got bad , minimum of 3 clonic tonics daily so i went to the doctor and soon enough i could explain what pwoplw had seen me do and the hospital put me on 4 dosses...
    jodyjames2397 jodyjames2397 18-21, M May 29, 2015

    Your Response

    Cancel

    Going onto my veeg session

    for five days. Well, if they find something.
    MipetKari MipetKari 46-50, M 2 Responses Aug 28, 2015

    Your Response

    Cancel

    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

    Your Response

    Cancel

    I'm 28 & had it since I was 6.

    Been on many meds but they never work for very long. I have left temporal lobe with complex partial and tonic clonic seizures, sometimes life threatening. I'd really like for it not to run my life anymore.
    deleted deleted 26-30 Jun 6, 2015

    Your Response

    Cancel

    I like my seizures because after,

    they make me feel like my brain functions on a whole separate plane of consciousness and reality. It has its own electric current. ~
    0liability 0liability 22-25, F 6 Responses May 23, 2015

    Your Response

    Cancel

    Actually I don't, I used to

    but I just grew out of it. I still have moments where my mind feels kind of foggy but I don't take medication. My son I am beginning to worry about though, he is zoning out and I'm wondering if he could have it. he is adopted so no genetic link but the. things he says. ring...
    RobertaSunset RobertaSunset 36-40, F 3 Responses Jun 20, 2015

    Your Response

    Cancel