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

I Have Epilepsy

Personal Stories, Advice, and Support 1,102 People

    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 5 Responses Mar 11

    Your Response

    Cancel

    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

    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

    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

    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

    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

    Your Response

    Cancel

    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 3 Responses Mar 14, 2014

    Your Response

    Cancel

    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

    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 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

    Your Response

    Cancel
    goku0284 goku0284 26-30, M 1 Response Mar 9

    Your Response

    Cancel

    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...
    fOrEvErYoURs321 fOrEvErYoURs321 26-30, F 3 Responses Mar 11

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    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 1 Response Mar 25, 2012

    Your Response

    Cancel
    thatonegirl156 thatonegirl156 16-17, F Dec 26, 2014

    Your Response

    Cancel

    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

    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 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, 2014

    Your Response

    Cancel

     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

    Your Response

    Cancel

    I've been living with seizures

    for 20 years and they didn't find anything that can be causing me to get seizures
    abi805 abi805 22-25, F 5 Responses Mar 1

    Your Response

    Cancel

    Has anyone had much experience with having

    epilepsy and being pregnant or raising kids? I have a two year old step son, and I hate having seizures in front of him. My husband and I are trying for another baby (all planned with my neurologist) but I'm just so scared of being alone with a toddler and a new born and having...
    sarbear82 sarbear82 18-21, F 1 Response 1 day ago

    Your Response

    Cancel

    med; levels spike. today was bad day,

    once things got going I knew what was wrong. my Dilantin level was too high. I was drunk most of day. this has happened before so I skipped couple doses. this is what er would have told me if a neuro was there and he knew a little about me. what my neuro has had me do in past...
    Scott1954 Scott1954 56-60, M 1 Response Jan 27

    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

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    I have about two seizures a week,

    and that's if I sleep well. Mine seem to happen if I had next to no sleep, or wake up throughout the night. I've been re-diagnosed with epilepsy nearly dozens of times in the space of two years. Now I'm back to no medication and it does worry me sometimes. Untreated epileptic...
    Bobbiin Bobbiin 18-21, F 3 Responses Mar 18

    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

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 1 Response Feb 21

    Your Response

    Cancel

    First time we realized

    when I was 5. I passed out while I was watching cartoons. Once my sister didn't realized what the hell happened. But she decided to take me to the neurology. FYI our parents left us. We live with my sister. Anyway the Neurologist wanted to do EEG on me but the test was negative...
    gregoryraven17 gregoryraven17 18-21, M 1 Response Nov 9, 2014

    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 3 Responses Dec 31, 2012

    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'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

    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

    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

    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

    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'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

    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
    MipetKari MipetKari 46-50, M 1 Response Dec 27, 2014

    Your Response

    Cancel

    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

    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 6 days ago

    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 have had Epilepsy since I was 10 months old

    the doctors are not sure how I got it since it does not run in my family. And they can't find a reason why I have it. I had 8 a day till I was about 10 when they finally got it under control with depakote 500mg capsules 2 in the morning and 2 in the evening, but when I was 17...
    kmccrady12653 kmccrady12653 18-21, F 1 Response