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I Have Psychogenic Non-epileptic Seizure Disorder

Personal Stories, Advice, and Support 72 People

    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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    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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    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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    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 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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    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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    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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    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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    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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    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 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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    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 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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    Sad!!!

    My non-epiliptic seizures are winning again!!!
    ahs01 ahs01 41-45, 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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    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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    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 4 days ago

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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 3 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 5 days ago

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

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    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...
    abi805 abi805 22-25, F 5 Responses Mar 11

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    I strongly suspect that I have 47,XXY Kleinfelter Syndrome. I was diagnosed with Hypogonadism two weeks ago. I'm 38. Previously I thought my issues were solely due to varicoceles...
    mjxxy mjxxy 36-40, M Mar 15

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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 have had 2 panic attacks years ago. they occurred in July when I was young and we would have family come and visit us. on the 2 and day of their visit I would have a seizure. the...
    peppit peppit 36-40, M Mar 16

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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...
    sarbear82 sarbear82 18-21, F 1 Response 2 days ago

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    I was surprised by how many cases of A.D.D. have popped up online in a myriad of different mediums - Youtube videos, social media, websites, ect. - that are all centered primarily...
    Jugemu Jugemu 31-35, M 1 Response Mar 7

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    Okay, so I don't personally have Body Dysmorphic Disorder but I have a boyfriend who does. We're both 18 years old and have been together for almost 2 years now and we both met...
    hannie96 hannie96 18-21, F 2 Responses Mar 12

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    I just recently researched this disorder after taking a personality quiz online. My results told me I suffer from APD. I haven't felt like this my whole life up until now. I'm...
    heaven89 heaven89 22-25, F 1 Response Mar 15

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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 a week ago

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    When most people hear the words "eating disorder", they imagine a white middle-class teenage girl. And they think the girl chooses to restrict, binge, or purge her eating because...
    Musicwillsaveyoursoul Musicwillsaveyoursoul 16-17, F 1 day ago

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    My latest Dx is MDD with psychotic features and PTSD. I am also a cutter and in recovery from bulimia. Previous Dx included schizoaffective disorder NOS, Bipolar 1 rapid cycling...
    Shonnie Shonnie 22-25, F 1 Response 1 day ago

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    I fear that my boss is catching on to my eating disorder... He commented on it... In a way... Not towards me about having an eating disorder, but he notices that I don't eat much...
    MrCutBleedSmile MrCutBleedSmile 18-21, M 2 Responses Mar 3

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    It's hard to admit that I have an eating disorder. I never asked for this, and I'm sure no one ever asks for this. Overcoming my problem should be as easy as eating, but it's not...
    InsaneFlowerGirl InsaneFlowerGirl 22-25, F 1 Response Mar 4

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