I Have Epilepsy

Personal Stories, Advice, and Support 2,797 People

    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
    1 Response Oct 31, 2012

    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
    1 Response Jan 25, 2016

    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
    3 Responses Feb 12, 2014

    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
    18-21, F
    Oct 24, 2013

    I had a seizure last night :(,

    tonic clonic, as in my room on my bed foaming in my mouth
    deleted deleted
    1 Response Jan 11, 2016

    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
    8 Responses Aug 17, 2015

    Going onto my veeg session

    for five days. Well, if they find something.
    MipetKari MipetKari
    51-55, M
    2 Responses Aug 28, 2015

    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
    6 Responses Jun 28, 2011

    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
    18-21, M
    1 Response Aug 18, 2015

    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
    26-30, F
    3 Responses Dec 31, 2012

    EP is closing down so I figured bow would be

    as good a time as any to look for support. I got lucky and was seizure free all through high school so I feel bad about complaining about my epilepsy period. But I'm in college trying to get into a competitive program, and my epilepsy decided to come back out of no where and...
    KindaPyro KindaPyro
    22-25, M
    1 Response Apr 16, 2016

    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
    2 Responses Nov 16, 2015

    I having a complex partial seizure,

    staring and picking on my clothes right now.
    elainenguyen619 elainenguyen619
    18-21, F
    Jan 1, 2016

    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

    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
    2 Responses Jun 20, 2015

    Here we come into a new month,

    a new season. The days get shorter, the air gets colder. The month of November is a very important one for me. Few of you in my group may know that I am an epileptic. I've had seizures since I was 10. They are all very small and minor, but still, they are annoying and sometimes...
    silentwriter180 silentwriter180
    46-50, F
    2 Responses Nov 1, 2015

    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
    8 Responses Mar 25, 2009

    I have 3 seizures today

    after school in my room
    deleted deleted
    Jan 15, 2016

    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
    2 Responses Mar 25, 2012

    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
    22-25, F
    4 Responses Jan 16, 2014

    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
    3 Responses Dec 19, 2014

    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
    22-25, F
    3 Responses Jan 5, 2014

    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

    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

    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
    2 Responses Jul 12, 2015

    I have uncontrollable seizures daily on on meds

    but they only control to a certain extent I'm on a waiting list to see yet another neurologist doctors are hopeless here they seem to be oblivious to epilepsy and I hate that.
    beccalovesmovies beccalovesmovies
    26-30, F
    1 Response Jan 19, 2016

    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
    26-30, F
    2 Responses May 13, 2014

    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
    2 Responses Jun 23, 2015

    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
    Jun 6, 2015

    After trying new medication

    and adjusting, I have been seizure-free long enough to restore my driving privileges!! I have been without the medical privilege to drive for over 2 years. This is liberating, since I live alone now. I just wanted to share! Keep searching and keep looking for combinations that...
    tachem46032 tachem46032
    56-60, M
    Nov 25, 2015

    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?
    deleted deleted
    1 Response Jul 17, 2015

    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


    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
    6 Responses Feb 7, 2011

    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
    1 Response Nov 21, 2015

    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...
    deleted deleted
    1 Response Feb 1, 2016

    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
    22-25, F
    2 Responses Jun 15, 2014

    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
    22-25, F
    1 Response Mar 20, 2014

    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

    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
    18-21, M
    1 Response Aug 8, 2015

    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...
    deleted deleted
    1 Response Jan 17, 2016

    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

    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
    5 Responses Mar 29, 2015

    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

    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
    5 Responses Jul 4, 2014

    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
    26-30, F
    5 Responses Mar 11, 2015

    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

    I have seizures everyday,

    whenever I am at school, out with my friends or family and at home, I always will have a seizure. I hate it, but I have to live with it.
    cuttypie123 cuttypie123
    18-21, F
    2 Responses Oct 25, 2015

    After eight months of going through the

    bureaucracy of our health system and waiting for their approval, I finally had the chance to see a new neurologist. I was excited, yet nervous, as the last couple doctors I'd seen really didn't do anything for me, and basically made me feel as though they were saying "take two...
    silentwriter180 silentwriter180
    46-50, F
    3 Responses Feb 12, 2016

    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
    deleted deleted
    1 Response Jun 30, 2015

    I am 15 years old with epilepsy.

    It has completely taken over my life and has ruined any opportunities for fun, my parents are very protective and I am grateful for that. After a while it has taken a dark toll on me and has caused me to shut down and close out on people. I have gotten into a deep depression...
    nicxlejones nicxlejones
    16-17, F
    6 Responses Aug 3, 2015

    No seizures on medicines at least,

    but every time we try to get off them. It happens again.. #*&%* Annoying :/ I am lucky it does not make much effect in my life. I just hate all the medicines i am taking at the moment..
    deleted deleted
    3 Responses Feb 12, 2016

    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
    2 Responses Jul 1, 2014

    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
    16-17, F
    3 Responses Dec 26, 2015

    I'm one year seizure free

    as of January 18th!
    HopelesslySurviving HopelesslySurviving
    18-21, F
    1 Response Feb 12, 2016


    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

    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...
    foReverYOURS3211 foReverYOURS3211
    26-30, F
    3 Responses Mar 11, 2015
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