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I Have Psychogenic Non-epileptic Seizure Disorder

Personal Stories, Advice, and Support 72 People

    23 Years Of Being Lied Too!!!!!!

    After 23years of being told that i have epilepsy one visit to specialist and then to be told i have non epileptic seizures.....dont know really how i feel..............angry,annoyed,very very upset and confused cant face work etc.feels like i have lied to people all these years...
    Spazead Spazead 41-45, F 1 Response Oct 24, 2009

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    I Would Like To Share My Experience Of Having Psychogenic Non-epileptic Seizure Disorder

    Please take into account, that these 'episodes/moments' can be finished by getting me to fall asleep, after this I am back to my 'normal' self and can continue with my 'normal' life. Also each and every 'episode/moment' I have, I have no recollection of any - bar one behaviour...
    Jakeybeal Jakeybeal 16-17, M 4 Responses Aug 2, 2012

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    I Have What They Call Sudo Seizures!!!

    I have had these (out) moments ever since I can remember. Massive headaches, diagnosed with PTSD, ADHD, bi polar syndrome, migrains. they all had their ideas what this was. I went on seizure medication, ativan, and a number of sedatives. I would wake up at times not knowing...
    motherwhy motherwhy 26-30, F 3 Responses Feb 19, 2010

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    Different Names Known For Nead

    DIFFERENT KNOWN NAMES FOR NEAD • NEAD • PNES • NES • Non Epileptic Attack Disorder • Non Epileptic Seizures Pseudo seizures • Pseudo-Epileptic Seizures • Dissociative Convulsions • Psychogenic Non Epileptic Seizure • Psychogenic Non Epileptic Attack...
    nonepilepticseizures nonepilepticseizures 22-25 Jan 23, 2011

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    I Have Pnes Too And Have Had It For A While.

    I too suffer from PNES. As a matter of fact, I had one of those episodes today that I haven't had in a while.   For those that don't understand what this disorder is, it's a somatoforic form of anxiety. To many people, it exhibits behaviors like an epileptic siezure...
    oneslimmess oneslimmess 36-40 10 Responses Apr 17, 2011

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    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, in case it turns out to be that. I'd like to find out about other people's experiences with the humiliation, stigmatization...
    GreenButtercup GreenButtercup 36-40, F 1 Response Apr 10

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    I was just diagnosed with pnes my dr was soo

    nice trying to not be mean or hurtful he even said if he had a choice he would rather have pnes than epileptic. I have dissociative identity disorder is that true for anyone else and how long was the recovery process. I can't drive and have things to do as well as am trying to...
    nomoreoopsy nomoreoopsy 31-35, F Apr 5

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    Nead Trust

    Hi My Name is Michelle and i am Co -Founder of NEAD Trust, a registered charity i set up with my partner after being diagnosed with Non Epileptic Seizures. We have been running the trust for 2 years now, and have been a charity since August of 2009. We set it up as there is...
    fuzionmx fuzionmx 26-30, M 1 Response Jan 19, 2010

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    Hi. I am 24 yrs old. I have being dealing with

    PNES for about 7 months. My mother has urged me to reach out to other people who have this condition in hopes that I can find answers and learn how to better treat this condition. Like many other people with this condition, I have a history of physical abuse, but it is only now...
    JUSTMEFINALLY JUSTMEFINALLY 22-25, F 2 Responses Apr 4

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    Pnes

    I was diagnosed with pyschogenic non epileptic seizures or pnes in Oct. Of 2012. My brain and body shut down due to stress. I'm starting CBT soon in hopes that it helps.
    brisgirl20 brisgirl20 31-35, F Apr 6, 2013

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    Why Mee

    Hello we'll here is my story I am 36yr old mother of four . The reason for the seizure are I was put on antidepressants because I hada very abusive childhood an suffering from Post traumatic stress so the meds I was put on started to give me headaches . I went to my doct they...
    Steelergerl Steelergerl 36-40, F 1 Response Aug 14, 2013

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    PNESD

    I have Psychogenic Non-Epileptic Seizure Disorder. Basically, this means that my body has seizures, but there is no abnormal electrical activity in my brain. My triggers include, anxiety, fear, stress, and sadness. I used to have many more seizures, but now I control my...
    ShakeyDNB ShakeyDNB 26-30 3 Responses Sep 30, 2008

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    New Diagnosis

     After 35 years of 'is it epilepsy or isn't it?', having to take AED's, being in and out of hospital - sometimes being on a ventilator due to amounts of medication I have been given - video telemetry has now confirmed that my seizures are not epilepsy. It doesn't matter...
    whatonearth whatonearth 46-50, F 1 Response Dec 28, 2009

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    My Recent Experience!

    I was hospitalized over a year ago after I had an "episode". My family didn't know what to think so they rushed me to the hospital. There, they couldn't figure it out either. Later I explained my symptoms to my doctor and we agreed I had Generlized Anxiety Disorder but that never...
    skijor skijor 51-55, M 1 Response Jan 15, 2011

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    A Decade Of Battles

    i had a stroke in early 2000. i was sent from one doctor to a specialist to another and back again. i lost alot of my short term memory, my right peripheral vision, and most of the hearing in my right ear, and this was the beginning of a head ache that still has not gone...
    kattarrin kattarrin 22-25, F Mar 3, 2012

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    Psychogenic Non-Eplictic Attack Disorder

    Mine started 8 yrs ago with a sharp pain in the back of my head. They progressed into what felt like a heat wave from inside my then heat my whole body. At that time I had enough warning to get into a safe place not to hurt my self. It was like I was frozen inside my head, my...
    Sheilamouse Sheilamouse 46-50, F 2 Responses Aug 18, 2013

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    I Have The So - Called Pseudoseizures.

    As I stated, I always was very stress - prone and had problems with fainting or going into emotion outbursts at inapropriate times. It all started about November two years ago. I was getting increasingly weak and faint for some time then. And suddenly, it hit me like a ton of...
    BridgeFan1994 BridgeFan1994 18-21, F 4 Responses Jul 13, 2012

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    I am joining on behalf of my daughter.

    She is 38 and she has about 1 gran mal seizure a month with dizzy episodes off and on. She has had CT's in ER but they never show anything. I found an epilepsy charity foundation and she visits them once a month for medication, but the doctor there is not a Neuroloigst. She has...
    sandym25 sandym25 61-65, F Apr 27

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    I first though I was having a stroke.

    My left side went numb and my left side of my face drooped. I was speaking gibberish and my BP was high. I went to the ER and spent days in the hospital running all kinds of tests....All normal. The one sided weakness weakness slowly went away and I followed up with a...
    orchardoriole orchardoriole 41-45, F 1 Response Jan 16

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    I Was Diagnosed With Pnes Disorder

    I was diagnosed with Pychogenic seizures 07/20 after I was found "sleeping" on the job at work. I worked in a call center and was on a call with a customer when i became very confused and disoriented and was breaking out in a clamy sweat. told the customer that it was ok to crash...
    gnomemad gnomemad 22-25 5 Responses Nov 28, 2011

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    Non Epileptic Seizures

    I had a non epileptic seizure disorder for almost 4 years. I have had all of the testing and scans there are, seen the top Epileptic doctors in the country, had 2 complete in hospital brain wave sleep studies, tried epileptic medication with no positive results. Symptoms...
    Seizurelessinseattle Seizurelessinseattle 41-45 4 Responses May 11, 2011

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    Medical Misery

    Hello Everyone, I'm Sami and I'm 23 years old. On Valentines Day(2012), I was diagnosed with Epileptic Seizures (among other things... Chiari Malformation with Syrinx, gastritis, ovarian cysts, acute cholecystitis...) On St. Patty's Day, I was diagnosed with Nonepileptic...
    samiannie813 samiannie813 22-25 3 Responses May 16, 2012

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    Some Info I Gathered And Put Togther A Few Years Ago Hope It Helps :d

    ARE sufferers of Non Epileptic Seizures and we live with this condition every day of our lives! We are here to reach out to other sufferers and their familes, who can feel isolated and alone, living with a condition that is not common, very misunderstood, and all too often...
    nonepilepticseizures nonepilepticseizures 22-25 5 Responses Jan 23, 2011

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    One Step At A Time.

    I was diagnosed 7-22-13. I feel lost, I don't know what is going on. I started having seizures after I was struck on the back of my head by a 75lb icicle in 2-2010. The doctors all said they were post conclusive and they would end. I've seen so many doctors trying to figure...
    Nora1965 Nora1965 46-50, F 2 Responses Jul 23, 2013

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    Sad!!!

    My non-epiliptic seizures are winning again!!!
    ahs01 ahs01 36-40, F Sep 20, 2013

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    Non Epileptic Activity Disorder

    I was released from the epilepsy monitoring unit under the guise that I have NEAD. It is really difficult because most people do not know what this disorder is much less understand it. Friends and family get skeptical.. but it could be worse... taking anti epileptic...
    matchu matchu 31-35, M 6 Responses Sep 5, 2009

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    Related Experiences

    I am 19. I can't really do anything. I can't drive, I can't move out of my parents house. Medical history I had a small brain hemorrhage in December of 2012. They didn't do...
    CrystalLynn1995 CrystalLynn1995 18-21, F 2 Responses Dec 10

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    I have been suffering this disorder for about three and half years now. I'm on some good treatment now, hope it continues but I still can't do much without becoming ill. So that is...
    Shabbychic2 Shabbychic2 51-55, F 1 Response 3 days ago

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    And I love him more than anything even when he's being difficult.
    emem37 emem37 16-17, F Dec 8

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    Idk what types of sleep disorders are there in the world, but sometimes, I really feel/do weird things in my sleep that I think I might have some kind of sleep disorder. Apart...
    MissGaga MissGaga 22-25, F 2 Responses 1 day ago

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    My abortion is tomorrow morning. I'm 21 and the father is 20. We've been friends since 4th grade and it was just a drunk one night stand. He said he would support whatever I...
    soitgoes810 soitgoes810 18-21, F 2 days ago

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    I REMEMBER THIS THIS IS WHY I HAVE ADHD (ATTENTION HYPERACTIVITY DISORDER) I REMEMBER WHEN I ATTENDED COMMUNITY COLLEGE WE WERE TOLD TO WRITE AN ESSAY ABOUT THE THINGS AROUND...
    ONESTARRYSTARRYNIGHT ONESTARRYSTARRYNIGHT 26-30, F 1 Response 14 hrs ago

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    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...
    henal216 henal216 18-21, F 1 Response 9 hrs ago

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    My wife( 36, a twin, living in NZ), has MELAS. Hearing loss declined between 2007-2012. Had first grand mal seizures in 2012, diagnosed with mitochondrial disease/MELAS. Sadly had...
    Richeste Richeste 36-40, M Nov 29

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    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...
    Showjumper1 Showjumper1 18-21, F 1 Response Nov 30

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    I need to talk about last night. Yesterday morning was great. 'A' wasn't feeling as sick as usual (she has been coming down with fevers for around two weeks now) and was able to...
    Remotay88 Remotay88 18-21, F 1 Response 4 days ago

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    Like I said on my October 4th post about not understanding my dreams I still don't. I just came off my anti seizure meds yesterday. And now I went from flying in my dream to dying...
    Balloonboy33 Balloonboy33 26-30, M 2 Responses Dec 11

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    I am new in my recovery it has been a whirlwind of change which of course overwhelms me. Ed relentlessly screams the most vile **** in my head! On top of it all I have lost a lot...
    lunacymoon lunacymoon 22-25, F 35 mins ago

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    So I get to go to the neurologist tomorrow to go see about getting on some new medication because my seizures have kind of been out of control lately and it really scares me...
    BroadwayBound2014 BroadwayBound2014 18-21, F 4 Responses Dec 2

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    I just want to meet someone who has seizures also and understands.
    Runawaywithme123 Runawaywithme123 16-17, F 3 Responses 5 days ago

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    ~20 Years Later~ . So, that guy I dated when I was 16-17 yrs old and again when I was about 20-23 yrs old (cause I thought he might had changed during that time but didn’t...
    OlivePhire OlivePhire 36-40, F 2 Responses Nov 20

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    Idk, i guess i've always been this way...it simply got worse with time. I'm not anorexic, or bulimic or a binge eater or anything along those lines. I don't have issues with my...
    IAmOptimusPrime IAmOptimusPrime 22-25, F Nov 30

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    It's actually pretty fun so I guess I never understood why it's considered a problem. Well, that's not true, it does get very annoying for instances where you desperately need to...
    EngulfingBreeze EngulfingBreeze 22-25, F Dec 4

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    I have several friends with BPD. My one friend I'm getting pretty close to she has distance herself somewhat from me however I talk to her in a language she understands. I do my...
    cutie7710 cutie7710 36-40, F 1 Response 1 day ago

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    i have had epilepsy since i was a young kid at school. thankfully i've not had any epileptic fits since i was a kid as it's been under control with my medication.
    GirlyAndrea1987 GirlyAndrea1987 26-30, M 2 Responses Nov 23

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    The worst aspect of them is that even in recovery, you never entirely let go of the thought-patterns and emotions that link so deeply with the behaviours that drove you there...
    morea morea 22-25, F 1 Response Dec 5

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    I was diagnosed with borderline personality disorder about one month ago. Borderline can consist of emotional disegulation, anger, disruptive interpersonal skills and other things...
    sarahcas sarahcas 22-25, F Nov 24

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    I think I might have borderline personality disorder. I am bulimic and am also diagnosed with general anxiety disorder and major depressive disorder. I am taking medication to help...
    yonnie97 yonnie97 16-17, F Nov 26

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