Post

I Have Epilepsy

Personal Stories, Advice, and Support 435 People

    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

    Your Response

    Cancel

    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

    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

    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

    Your Response

    Cancel

    I would appreciate your feedback!

    ! I have had Petit since 8 YO! And at 40 I was hit with a change to Grand. With these seizures getting worse and lasting at times in excess 4 min. Now I'm scheduled for a MRI and 24 HR EEG so the Doc can see lesions! He has spoke of surgery (legs a skaken) and depending on what...
    koltan88 koltan88 56-60 1 Response Jul 11

    Your Response

    Cancel

    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 2 Responses Dec 31, 2012

    Your Response

    Cancel

    I saw my epileptic specialist 3 weeks ago on

    Monday and he said that the EEG scan said that there are no results showing that I had Juvenile Myclonic Epilepsy which they said before I might have which I now don't have it anymore It was the best day of my life because it made me realise that I had got over a massive step...
    JonnyBurrows10 JonnyBurrows10 18-21, M May 15

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 Aug 2

    Your Response

    Cancel
    silentwriter180 silentwriter180 41-45, F Nov 1, 2012

    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

    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

    I wish it would just go away

    and it never will. My life forever changed when I had my accident leading to my development of epilepsy. My personality changed, life aspects, and various other things as well. People tell me that I was once very friendly and open with other people around me; retelling me...
    asert12345678 asert12345678 31-35, M 3 Responses May 31

    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 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

    From Colors to Darkness

    When I had my first seizure I had no idea what it was.  Neither did anyone else because I was the first one in the office that morning and woke up as my co-worker was coming in.  Because I couldn't speak I was taken to the hospital where the Drs figured I...
    AmyLC AmyLC 31-35, F 2 Responses Apr 16, 2009

    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

    I'm tired of spacing out

    because of absent seizures. I hate sometimes getting confused after. It's constant pain. I just wish there was something I could actually do for my epilepsy instead of just hoping that one day it might finally just disappear. I just wish I had some way to actually fight it...
    Alisaperne6446 Alisaperne6446 18-21, F 2 Responses Apr 22

    Your Response

    Cancel
    Alisaperne6446 Alisaperne6446 18-21, F Jun 10

    Your Response

    Cancel

    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 Mar 22

    Your Response

    Cancel

    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...
    GreenButtercup GreenButtercup 36-40, F 2 Responses Apr 7

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    It's been almost ten years

    since since I found out I had epilepsy. I can't believe it's been so long. I couldn't even tell you what I'm feeling right now are because even I don't know for sure what my exact feelings are. I guess I don't believe anymore that they'll ever go away. But I focus on how to live...
    Alisaperne6446 Alisaperne6446 18-21, F May 25

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    Has anyone else ever had a dissociative seizure?

    I think I had one a few weeks ago and one last week. Both times I got very emotional beforehand and just started uncontrollably ******* and had chills. I genuinely thought I was going to have a grand mal seizure as the symptoms were quite similar (I was diagnosed with JME 7...
    twiggy93 twiggy93 18-21, F 2 Responses Apr 26

    Your Response

    Cancel

    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...
    GreenButtercup GreenButtercup 36-40, F 3 Responses Apr 7

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    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 3 Responses Jan 16

    Your Response

    Cancel

    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...
    GreenButtercup GreenButtercup 36-40, F 2 Responses Apr 7

    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

    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 4 Responses Jan 5

    Your Response

    Cancel

    Does anyone else sometimes hate explaining to

    their doctor how they been and what symptoms they are experiencing. I always feeling like Im just complaining or whining. I feel like sometimes Im just acting ignorant or he'll think I'm being paranoid. He's so quiet too and sometimes I just don't know what to say. Normally I...
    Alisaperne6446 Alisaperne6446 18-21, F 2 Responses May 20

    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 16-17, F 6 Responses Jul 4

    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

    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 2 Responses Jan 5

    Your Response

    Cancel

    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

    Your Response

    Cancel

    i have epilepsy since age 2 .

    i have the syndrome called lennox-gastaut . that is meds resistant and very difficult to treat with meds . seizure are well more controled then when i was younger but i still have seizure every week or two . and drop seizure every day .
    alain45 alain45 46-50, M May 3

    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

    My Vents On Epilepsy

    I hate having epilepsy, but I have learned to not be a victim. My epilepsy has caused me to have 3 miscarriages. I will no longer try to have a kid. Due to epilepsy and me being on depekote. I have had epilepsy since I was 6 years old. I take depekote, Tegretol and lamictal. My...
    Crystal3d Crystal3d 36-40, F 4 Responses Nov 28, 2012

    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 9 Responses Mar 25, 2009

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 1 Response Jul 16

    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 18-21, F 4 Responses Feb 12

    Your Response

    Cancel

    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...
    GreenButtercup GreenButtercup 36-40, F Apr 7

    Your Response

    Cancel

    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 18-21, F 7 Responses Apr 5

    Your Response

    Cancel