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I Have Psychogenic Non-epileptic Seizure Disorder

Personal Stories, Advice, and Support 69 People

    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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    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 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 2 Responses Jan 16

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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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    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 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 2 Responses Jul 13, 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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    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 4 Responses Sep 30, 2008

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    Sad!!!

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

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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 41-45, F 2 Responses Aug 18, 2013

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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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    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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    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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    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 Apr 4

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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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    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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    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 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 3 Responses Aug 2, 2012

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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...
    Buckley4U Buckley4U 36-40, F 1 Response Apr 10

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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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    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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    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

    This is exactly what happens to me and gets mis-labelled as 'anxiety' or whatever. http://www.bcepilepsy.com/files/Information_Sheets/All_About_Partial_Seizures.pdf All About...
    Buckley4U Buckley4U 36-40, F 1 Response Apr 7

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    I know this is very controversial, but I want to share a few things about exorcism / deliverance ministry with regard to epilepsy / seizure disorders. As a Christian I do...
    Buckley4U Buckley4U 36-40, F Apr 7

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    I have suffered from an eating disorder for most of my life. I am 23 now. Anorexia developed in me when I was 10, by the time I was 15 it was severe and included bits of bulimia. I...
    Mslip Mslip 22-25, F 1 Response 4 days ago

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    I don't know why but I'm fascinated by mental disorders and part of me wants to have one like depression, bipolar disorder, schizophrenia, etc.
    stupidsillygirl stupidsillygirl 18-21, F 1 Response Mar 28

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    Hi! My name is Natasha. I'm new to this so bear with me. I used to think that God didn't care about me. I hated Him and even started to doubt his existed. I didn't believe in Him...
    LoveNeverFails21 LoveNeverFails21 18-21, F 2 Responses 5 days ago

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    I have been diagnosed with BP disorder and it's getting worse- especially as it's causing others to think less of me and leave me out of things because they believe i'm "unstable...
    Gerald6 Gerald6 18-21, M Mar 23

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    I didn't really have a full-blown eating disorder. I used to make myself throw up. a lot. I would eat a meal then feel so sick and so gross that I would immediately run to the...
    countryanon countryanon 16-17, F Apr 12

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    I am wondering what the difference is between a syncope attack and a seizure, because I seem to be getting both, and I have a lot of after-effects like an hour or two of confusion...
    Buckley4U Buckley4U 36-40, F 1 Response 1 day ago

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    No official diagnosis yet but it most likely CD. I have had migraines for 3 years. About 3 months ago I 'passed out.' I really don't remember myself. Here is what I do remember...
    Ajokd Ajokd 36-40, F Mar 22

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    I'm Ryan, and I have epilepsy. On September of 2005 I had my first seizure and it was a big one ( grand maul seizure ). Early that night around 4:00 am I had a grand maul seizure...
    ryanthelion101 ryanthelion101 18-21, M 1 Response Mar 31

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    I had a bad seizure last night. Don't remember anything except I felt like the whole house was rocking like a boat and my partner helped me to bed and I laid down. I couldn't talk...
    Viciouspistols Viciouspistols 22-25, F 2 Responses Mar 26

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    http://www.bcepilepsy.com/files/Information_Sheets/All_About_Partial_Seizures.pdf This is a pretty comprehensive description, along with suggestions on how to handle situations...
    Buckley4U Buckley4U 36-40, F 1 Response Apr 7

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    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...
    RedtheEmerald RedtheEmerald 13-15, F 4 Responses Apr 5

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    I have a bipolar partner. We are both 19 and in 6th form. Its difficult to describe the disorder and how its taken a toll on our relationship. But I can try, this is not a self...
    anonymous1104 anonymous1104 18-21 Apr 11

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    Hey everyone my name is Aneesah and I have just been diagnosed with psychosis and mild depression.Just a little history :so last year this time i tried to commit suicide i...
    Larutan Larutan 18-21, F 1 Response Apr 12

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    I've had epilepsy since I was 10. When it started it was only in my sleep and we thought I was just moving around a lot but I would frequently end up on the floor. Once I was told...
    alittlemoresonic42 alittlemoresonic42 18-21, F 1 Response 6 days ago

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    27F just diagnosed, it all started with seizures 3 months ago, I was about to go to bed and my hands went tingly, then my arms, and my breathing become shallow, I had terrible...
    brandedangel brandedangel 26-30, F 2 Responses Mar 21

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    Misguided deliverance attempts. When the doctors refused to help me, I allowed other people to try - with disastrous results. In some cases I didn't actually allow it, but rather...
    Buckley4U Buckley4U 36-40, F 3 Responses Apr 7

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    I've had it since I was 8. Its familial. Typically its been VERY easy to control with medicine. I had a string of seizures a few months ago but its whatever. I've always thought of...
    ChloeCat19 ChloeCat19 18-21, F 1 Response 4 days ago

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    Since i was even a tartlet.... All my life has been a series of binge eating without purging, then starvation, on and off, on and off. I'm binge eating nonstop as for now. I see...
    AprilBurden23 AprilBurden23 18-21, F 3 days ago

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    Though I have chosen to mostly integrate, I still have child energy-alters who show up. When life gets sticky or a task becomes difficult, there is still the urge to throw it onto...
    slver slver 51-55, F 2 Responses 3 days ago

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    My adult son has binge eating disorder. We have four children, all living at home, and this problem puts a gigantic shadow over the whole family. My son is totally obsessed with...
    perseverer perseverer 51-55, F 2 Responses Mar 21

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    I was diagnosed with Schiztotypal Disorder in 2011 and ever since then things have begun to be understandable yet difficult. It explained why I feel detached and disconnected from...
    m4ch1n3121 m4ch1n3121 22-25, M Mar 21

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    I have an eating disorder, but know one in my family takes me seriously. I know I have Binge Eating Disorder and I have had it for a long time now. I can't stop putting food in my...
    Marisa67002 Marisa67002 26-30, F 1 Response Mar 27

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    I have had this disorder sense middle school (and I am now 22). Many people could never diagnoss my condition because I could never completely describe it nor did I trust others...
    LiliumxoTears LiliumxoTears 22-25, M 3 Responses Mar 31

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    Eating disorder was never my main illness, it think it developed due to my Schizotypal Personality and Depression, but I know what is to struggle with eating disorder...I can say...
    lauruze lauruze 22-25, F Apr 12

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    I don't think I'd ever tell anyone but I might as well. I have Schizoaffective Disorder which, in a basic definition, it's like Bipolar and Schizophrenia, some people have...
    PitchDaffy PitchDaffy 22-25, F 1 Response 3 days ago

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    ***Before you read this: I am NOT looking for sympathy and/or pity; I'm trying to explain a little what living with this disorder is like. Please don't feed the narcissist's supply...
    LiquidThinking LiquidThinking 41-45, M 1 Response Mar 30

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    My problem with getting this diagnosis was that I used to not like the fact that everyone gets labels. I mean, I still feel like certain terms get thrown around way too casually...
    showusyoursouls showusyoursouls 18-21, F Apr 1

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    This Is The Soundtrack Of My Life Living With Schizoaf