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I Have Psychogenic Non-epileptic Seizure Disorder

Personal Stories, Advice, and Support 69 People

    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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    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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    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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    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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    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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    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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    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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    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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    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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    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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    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 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 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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    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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    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 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 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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    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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    Sad!!!

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

    I am 32 I was diagnosed with seizure disorder at 24. I went 3 years seizure free until last Tuesday.. I don't know what or why it happened? I take my meds like I'm supposed to. I...
    Beanbella Beanbella 31-35, F 2 Responses Jun 27

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    I don't have full-on seizures anymore, but I sometimes can still feel one coming on. Anyone with a seizure disorder can probably understand what I mean. I was 17 when I was...
    Kryzta Kryzta 26-30, F 2 Responses Jul 8

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    I'm scared i may become anorexic, or have a type of eating disorder. I'm not naturally super skinny but i am "skinny". I have muscly thighs so they are not tiny. I'm confident in...
    blankaspaper blankaspaper 13-15, F Jun 29

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    Sometimes I get really upset about the mental "illnesses" that I have because I am not a soldier yet I have PTSD, I have not had the worst life ever, yet I have depression, anxiety...
    Lifebugzme Lifebugzme 18-21, F 1 Response Jul 6

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    Why can't I have feelings? I have been diagnosed with schizoaffective disorder with bipolar I tendencies (before it was bipolar I 14 years ago). I now realize what I can and...
    gstanlove1 gstanlove1 31-35, F 1 Response Jul 15

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    I think I have Asperger's. I have been diagnosed with many disorders over the years, depression, anxiety, ocd, ptsd, and we have touched on Asperger's, but never has it been a...
    13thgen 13thgen 36-40, M 2 Responses a week ago

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    I have never heard of it but apparently its an obsessive disorder and people with borderline personality and anxiety disorder have it. I don't know how i am going to stop because i...
    Gentleandlovingsoul Gentleandlovingsoul 36-40, F Jul 1

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    I have Adjustment Disorder with mixed anxiety and disorder, and yes I was diagnosed with it, not self-diagnosed. I feel depressed most of the times, I always get butterflies in my...
    Mikaylaxo Mikaylaxo 13-15, F 2 Responses 6 hrs ago

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    I was recently diagnosed in December 2013. I have been doing Ivig infusions ever since. I am on baclofen, iron, meclizine, cymbalta, lexapro, suboxone for pain, toradol, vimovo...
    CatFlag CatFlag 31-35, F 1 hr ago

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    I started an anti-seizure medication (Topamax) for mood stabilising and migraine control, but had a severe reaction to it that I can only describe as a seizure. I started feeling...
    SuperInferior SuperInferior 22-25 Jul 12

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    I'm 22 years of age and have had Juvenile Myoclonic Epilepsy since I was formally diagnosed when I was fourteen. Before that, I was just having Abscence seizure so they weren't...
    Kida07 Kida07 22-25, F 1 Response Jul 10

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    It started with me getting these high pitch squeals. Like a surge up my spine and unless I concentrated hard, it would come out. Usually when I was most peaceful it would suddenly...
    Skywalker1979 Skywalker1979 31-35, M 1 Response 1 day ago

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    Either I am suffering from SAD, or I'm near a full blown depression again.. I have some reason to believe it's the first. About 8 years ago I went through a heavy depression. Even...
    Jemoeder Jemoeder 26-30 7 hrs ago

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    I was diagnosed with ADD 3 years ago. When I did get diagnosed, I saw it as some sort of great tragedy to my intelligence. Now, I'm just trying to see it as a good thing. I'm tired...
    RobynShnobyn RobynShnobyn 18-21, F 3 hrs ago

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    Since I told my husband I have DID, I no longer want anything to do with him physically. Sex was always torture for me; it hurt, it's gross, and I never really desired it. I only...
    BrokenOneX BrokenOneX 26-30 2 Responses 19 hrs ago

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    I recently got diagnosed with ADD. It makes sense when I think about it but while it gives me some hope of achieving academic sucess. It feels like I am defective...its a bit of a...
    drakneko drakneko 22-25, T 1 Response 16 hrs ago

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    I was diagnosed with ADD when I was 14 (I am now 20.) and have tried almost all of the medications out there. So far vyvance has worked the best for me. I'm currently on it and...
    krazykay20 krazykay20 18-21, F 2 Responses 15 hrs ago

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    I have about 7 mental disorders. I have bipolar, schizophrenia, borderline personality, impulse control, intermittent explosive, PTSD, and Asperger's syndrome. I have a lot of...
    Blaze1103 Blaze1103 26-30, F 14 hrs ago

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    We want to talk to other DID systems :) if you have DID or DDNOS-1 and want to talk, message usss ❤️
    Yourguardianangel9613 Yourguardianangel9613 16-17, F 1 Response 7 hrs ago

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    I'm new here. And I really wanted to post this, because I struggle with it everyday. And it is that I fear I have multiple mental illnesses. It feels really strange to post that...
    iHack iHack 13-15, F 3 Responses 5 hrs ago

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    I have had epilepsy for almost 10 years. Since I was 6 years old. I have suffered from many tonic-clonic seizures & the cause of the first one was unknown. Luckily, I haven't had a...
    KMargatroid KMargatroid 16-17, F 6 Responses Jul 4

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    I used to have a very beautiful face. I hated my body but my face was attractive ( something i didnt realize then). Years of constant bullying of my rail skinny body got me...
    horridlife horridlife 18-21, F 4 Responses Jul 15

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    Here are top 10 home remedies for Bipolar Disorder. 1. Fish Oil Fish oil rich in Omega 3 fatty acids is one of the few things that can help in the treatment of bipolar disorder...
    LovelyLilly13 LovelyLilly13 22-25, F Jul 3

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