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I Have Psychogenic Non-epileptic Seizure Disorder

Personal Stories, Advice, and Support 74 People

    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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    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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    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 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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    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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    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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    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 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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    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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    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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    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 4 Responses Jul 13, 2012

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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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    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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    Sad!!!

    My non-epiliptic seizures are winning again!!!
    ahs01 ahs01 41-45, F Sep 20, 2013

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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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    When people have asked me what this thing feels

    like I tell them to imagine they are being stalked by the invisible man and he is armed with a taser. You do not know where or when your stalker is going to strike.
    Solitaireman Solitaireman 51-55, M 1 day ago

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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 26-30, F 2 Responses Apr 4, 2014

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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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    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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    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 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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    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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    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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    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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    Related Experiences

    Hello everyone. When I was about 9 yrs old I was diagnosed with epilepsy. now, 15 yrs later, I have been diagnosed with 2 (possibly 3) other forms as well. They hit me very hard...
    tig1991 tig1991 22-25, F 1 Response May 18

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    I gave my 10yr old step daughter some advice a month or so back and have only noticed now how much of it she took onboard. Things are so much better and her anxiety and guilt have...
    stormmistress stormmistress 31-35, F May 3

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    Not really, I was diagnosed with a non-specific psychotic disorder. Meaning "you're definitely weird and we have no idea what's up with you so here's this random label." A lot of...
    PinkMellow PinkMellow 18-21, F 3 Responses May 4

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    I want to share my entire experience with this disorder, as I have mostly had it for my entire life. I want to reflect, because most don't understand it. I am 28 now, and I have...
    Edg3Runn3r Edg3Runn3r 26-30, M 1 Response 4 days ago

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    For about a year now, I have suffered from an eating disorder. During that time I have gone from a beautiful, healthy girl to a grossly, thin stick. At first it was great being...
    Emilymay100 Emilymay100 13-15, F 2 Responses 3 days ago

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    I have been dealing with this disorder since 2002. I recently ended up in the hospital with stroke-like symptoms (twisting of my mouth and right-side weakness). I am at home...
    stresseD57 stresseD57 56-60, F 1 Response May 10

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    For some reason, i have extreme anxiety before sleep and almost to the point of a panic attack sometimes. not because of the future, not because of the past, just in general. like...
    thegirlinred thegirlinred 18-21, F 3 Responses 2 days ago

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    (I actually don't "have" it anymore, as I'd be well-over dead.) I had serotonin syndrome from 2011-2013. I confused it with mania, and I had never had a seizure before, so I didn...
    grindhound grindhound 22-25, T May 12

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    When I first discovered my personalities, I wasn't sure how to handle them, but as time went by, I got used to them and started loving each of them very much. Sometimes it's crazy...
    Silverfeather1993 Silverfeather1993 18-21, F 7 hrs ago

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    I'm 25 years old, female and Ive been ruminating as long as I can remember. Maybe it developed when I was very young? As far as I know, Ive always had it and Ive always just...
    Cintilatingsynchrony Cintilatingsynchrony 22-25, F 9 hrs ago

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    Well not now so much but in the past this has taken over my life. Now I'm much calmer. I take my meds... sertraline, on time and I've had lots of therapy. I used to be terrified of...
    RobertaSunset RobertaSunset 36-40, F 54 mins ago

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    A couple of days ago I was sure my husband was an undiagnosed narcissist with passive aggressive tendencies. And while he still continues to display traits and behaviors consistent...
    blutiger blutiger 41-45, F May 9

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    My sister and I both have been diagnosed with MELAS. I am 22 and my sister is 26. She was diagnosed first with the genetic disease when she was about 20. We both live in Toronto...
    hedyc hedyc 22-25, F May 21

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    Breaking Through Your Loved One’s Denial Watching someone you love struggle with an illness can be heartbreaking. It’s even harder when they yell at you, tell you to leave...
    kiarrafire kiarrafire 18-21, F May 7

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    I have DDNOS1 (Dissociative Disorder Not Otherwise Specified) aka OSSD (Other Specified Dissociative Disorder) DIAGNOSTIC CRITERIA (Code 300.15) from DSM-IV: This category is...
    TheCynicalOne TheCynicalOne 22-25, F May 13

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    I had another seizure, I was walking through the park with my friend. My head started to hurt, then I felt dizzy after that I didn't remember anything. My friend said that I was...
    elainenguyen619 elainenguyen619 36-40, F a week ago

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    Its true. I have Epilepsy.. I have a very minor version and usually seizures are barely noticeable (internal seizure) so it looks like i am spaced out in dream land when really i...
    CrystalSapphire CrystalSapphire 18-21, F 2 Responses