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I Have Psychogenic Non-epileptic Seizure Disorder

Personal Stories, Advice, and Support 69 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

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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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    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 3 Responses Aug 2, 2012

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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 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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    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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    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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    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 3 Responses Jul 13, 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...
    GreenButtercup GreenButtercup 36-40, F 1 Response Apr 10

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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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    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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    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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    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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    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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    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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    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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    Sad!!!

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

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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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    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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    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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    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

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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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    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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    Related Experiences

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    XxBadXVibesxX XxBadXVibesxX 13-15, F 4 days ago

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    Idk why but ever since 6th grade I have been getting really bad anxiety attacks. I know it is the start of middle school but 6th grade was rough then 7th grade it was good other...
    liajip liajip 13-15, F 3 Responses Sep 9

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    My dad was recently diagnosed with MELAS. He is 48 years old. He has been in and out of the hospital due to seizures and what we thought were strokes. He suffers from hearing loss...
    ering08 ering08 22-25, F 1 Response Sep 1

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    I think it's time for me to come out and admit this. I was diagnosed at 17 with Schizoaffective Disorder. I don't like to talk about it much because it's very personal and it tends...
    Shinook26 Shinook26 26-30, M 2 Responses Sep 6

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    Andrew558n8la3 Andrew558n8la3 31-35, M 1 Response Aug 23

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    I've had seizures before in the.past and haven't had one for 2 months but I have all the symptoms that I have before a seizure starts!!:( everyone in my house is asleep and I feel...
    deidremcgrew18 deidremcgrew18 18-21, F 1 Response 2 days ago

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    WHAT IS - A BREAK DOWN OF IT: Personality disorder involve patterns of behavior, mood, social interaction and impulsiveness that causes distress to the one experiencing them...
    SassyBabe39 SassyBabe39 41-45, F 2 Responses Sep 8

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    I had a seizure in sixth grade and got a concussion. Since then I haven't been able to remember a lot of things from elementary school and my short-term memory has gotten worse...
    indigo286 indigo286 16-17, F 2 Responses Sep 9

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    I've been reading, posting, and commenting on this group for awhile. I notice a lot of women come here asking what they can do to improve their marriages or make their husband...
    JacobsGirl360 JacobsGirl360 31-35, F 2 Responses Sep 1

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    I am writing a journal of my research of fear & what I'm still experiencing of my Depersonalization Disorder Fear Very few people don't understand...
    Joman9 Joman9 16-17, M 4 Responses Aug 18

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    Those of us who suffer BPD know where hell really is. It's inside us. No escaping the agony, pain and torture. No reprieve. It's in every moment of our day, our dreams and our...
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    I don't drink anymore because I am epileptic and my medicine reduces my tolerance to alcohol significantly. Also, I'm just not that kind of person. Yesterday made me feel ever...
    sjchevalier07 sjchevalier07 31-35, M 2 Responses Aug 31

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    I promised myself that when I felt that I had truly overcame my disorder, that I would share my story with those that are currently suffering Let me give a little background...
    dnicolee dnicolee 18-21, F Sep 2

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    I had another one again today over some homework right before class. I just completely broke down. It was terrible. Although I haven't, well, exactly, cried in front of them, I...
    Sourminds Sourminds 18-21, F a week ago

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    Tonight, I have decided to reach out and find others like me. Others with Conversion Disorder. To this day, I still battle with the tics and tremors that made it so I quit high...
    bluestocking18 bluestocking18 18-21, F Aug 19

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    Last edited 3 days ago by ElDelRey1 Sensory processing disorder Example of how visual, auditory and somatosensory information merge into multisensory integration representation in...
    ONEPIECE749 ONEPIECE749 18-21, M 2 Responses Sep 1

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    So basically i have an eating disorder and i think my teacher was figuring out that i had one and i need to know if you guys think that he started to figure it out or not. At lunch...
    flowerqueenx flowerqueenx 13-15, F 2 Responses Aug 20

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    Hello, I’m Dr. Horace S. Browntrout, and I’ve just written a hilarious spoof of the Diagnostic and Statistical Manual for Mental Disorders (DSM). It’s called Mental...
    DocBrowntrout DocBrowntrout 26-30, M Aug 24

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    I debated wether to join this group or one that uses the term "might have" an eating disorder. I've studied it. Logically I know I do. But sometimes I feel just utterly paranoid...
    danii92 danii92 18-21, F Aug 27

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    I have pica and I have done for as long as I can remember. Unlike most people who have the syndrome/disorder I have had cravings for a WIDE variety of things throughout my...
    Pandasaurusrex Pandasaurusrex 18-21 Sep 2

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    I try. It get's so frustrating to continue to try to do things that you know you are going to fail at. I was diagnosed with Adult Onset ADD when I returned to college at 25. I...
    piprimate piprimate 26-30, F Sep 8

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    I suffer from anxiety disorder from my teens and the doctors told me that i had anxiety depression years and years i was taking drugs for depression in the end my brain analyse...
    blackweirdcat blackweirdcat 46-50, F a week ago

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    I'm so scared, I just want my normal life back soooo bad. I'm 21 years old, and this all started to get really bad when I was about 17. I have an obsession with hair on my face and...
    sma1321 sma1321 18-21, F Aug 22

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