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I Have Psychogenic Non-epileptic Seizure Disorder

Personal Stories, Advice, and Support 72 People

    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, 2014

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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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    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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    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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    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 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, 2014

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    If a non-epileptic seizure isn't a seizure

    than what the heck is it? I'm sick of everyone brushing it off like its nothing just because it isn't an actual seizure caused by brain whatever's
    DarkOnTheInside13 DarkOnTheInside13 13-15, F 1 Response Feb 14

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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, 2014

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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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    Sad!!!

    My non-epiliptic seizures are winning again!!!
    ahs01 ahs01 41-45, F Sep 20, 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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    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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    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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    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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    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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    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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    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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    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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    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 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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    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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    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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    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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    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, 2014

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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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    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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    Related Experiences

    This seems to be the main cause of my mental health problems. I grew up in an environment where I was being put down for feeling emotional and even when I was feeling ok. My Mum...
    LinkinParkMuse LinkinParkMuse 26-30, F Mar 26

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    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...
    Bobbiin Bobbiin 18-21, F 2 Responses Mar 18

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    I have had several seizures. I have had grand map seizures in public twice and at home once, so I had to ride in an ambulance. I don't like grand map seizures because I get post...
    MLang MLang 51-55, F 1 Response Mar 25

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    I have a history of this disorder and want to learn more about as there's very little information out there on it
    shannonsjourney shannonsjourney 18-21, F Mar 18

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    I don't know what exactly is my problem, but I really think I have some kind of issue that's related to sleep, that I have some kind of sleep disorder or something, but I have no...
    MissGaga MissGaga 22-25, F 3 Responses a week ago

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    Hello fellow EP members on here.I go by Fruitypunch15 on here.I have personal story.I am Epileptic.I have been since the age of 2yrs old.I would like to meet other people who have...
    Fruitypunch15 Fruitypunch15 31-35 1 Response 4 days ago

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    Hi. Im new to this so.. please be understanding! I only have one personality. Her name is DoryBob and she is 3. Is it common to only have one alter?
    SallyandBob SallyandBob 16-17, F 20 hrs ago

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    OCTOBER 29, 2014 BY B. ROBERT FARZAD How to Protect Your Child From a Narcissistic Father or Mother? How to protect your child from a narcissistic father or mother Protecting...
    rescueme99 rescueme99 41-45 1 Response 3 days ago

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    I am a 39 year old female,. I have boarderline personality disorder, major depressive disorder(diagnosed at 10) adhd (diagnosed at 38), ptsd, anxiety, a past history of anorexia...
    sofullofcyn sofullofcyn 36-40, F 1 day ago

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    I recently found out that what my mother has been putting me through for years is called Narcissistic Personality Disorder. I knew things were weird but after years of living away...
    enough75 enough75 36-40, F 1 hr ago

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    I am hoping for some emotional and loving support here and would be extremely grateful for any advice relating to my situation (everyone can agree that it is most comforting when...
    life4love life4love 18-21 1 Response Mar 22

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    I am 23, I live by the beach. The other night (two days ago) sleeping at my girls house and we ate some really strong pot brownies before going to sleep. I know what your thinking...
    Wiseman333 Wiseman333 22-25, M Apr 9

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    Emetophobia has nearly ruined me. Due to the severe and prolonged stress of graduate school and full-time employment (yes, together), I developed terrible gastritis and GERD. To...
    marinderso marinderso 26-30 1 Response 1 day ago

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    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...
    Iammarriedtoamtftrans Iammarriedtoamtftrans 18-21, F 1 Response Mar 28

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    It was the first day of school and I think I was in 4th grade. We were at recess and I was just pacing the playground alone when I saw someone just fall and start violently shaking...
    SparkleSwirl SparkleSwirl 18-21, F 1 Response 6 days ago

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    I don't really know if it's a name in the medical field but that's how I am.. I know best to diagnose myself.. My friend came up with 'compulsive infatuation' and it fits me...
    Sorrentina Sorrentina 41-45, F 4 Responses 6 days ago

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    **** people who say anxiety and panic disorder isn't real. **** people who say that it's all in your head. **** people who say that it doesn't exist. **** people who say ANY...
    PsychGirl94 PsychGirl94 18-21, F 5 Responses 5 days ago

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    http://psychcentral.com/disorders/schizoid-personality-disorder-symptoms/ my life makes sense now, and i'm pretty sure i have this type of disorder. i'm not sure how long i've had...
    randomgirl42 randomgirl42 18-21, F 2 Responses Mar 23