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I Have Psychogenic Non-epileptic Seizure Disorder

Personal Stories, Advice, and Support 70 People

    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 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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    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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    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 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 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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    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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    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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    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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    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 1 Response Apr 4

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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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    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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    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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    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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    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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    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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    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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    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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    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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    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 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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    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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    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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    Related Experiences

    I have had epilepsy since I was 11. Its always held me back. I have social anxiety and anxiety about my seizures which doesn't help. I quit coolege and have sometimes been afraid...
    Grrrrgirl Grrrrgirl 22-25, F Oct 8

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    I have around 49 alters in me
    Shabee74 Shabee74 36-40, F 1 Response Oct 6

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    I haven't written in a while. Not that there hasn't been anything to share. Simply that... I've been attempting to live my life without diarizing all of it publicly. I started...
    DanicaER DanicaER 36-40, F 2 Responses Sep 20

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    I'm on this site as a last resort and reaching out to others for help. Thank you for taking the time to read. I myself have PTSD and major depression disorder. I married a man that...
    Neverfirstforeverlast Neverfirstforeverlast 22-25, F 2 Responses Sep 21

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    I have a lot of things. It's weird how I go on my daily life blending in with everyone else while my head is so chaotic. I have split personality: the other personality I have is...
    ponycupcake ponycupcake 18-21, F Sep 30

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    Hi my names Lorna I'm 31 and I live in kent in England. I was diagnosed with ADHD combined type in 2011 and have been abandoned by the mental health professionals I can't get CBT...
    Lornalas Lornalas 31-35, F 5 days ago

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    This is my very first experience post. I grew up as a military brat, my dad was in the Air Force, and we moved every two-three years. When I was 3 we moved overseas and I haven't...
    Alemiir Alemiir 18-21, F 4 days ago

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    Ok, here goes: I have my own issues, I tackle them head on and sometimes get scratched up. Disabled vet with PTSD and a handful of tough injuries. I hurt every day. I've been...
    Beanavore Beanavore 41-45, M 2 Responses a week ago

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    Hello. My name is Brittany and I am 16 years old. I have suffered with anxiety for as long as I can remember, but I was diagnosed with Generalized Anxiety Disorder at the age of 5...
    holdon45 holdon45 16-17, F 2 hrs ago

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    No one ever diagnosed me with ADHD besides myself... I just got written up at my job and feel pretty worthless... I never had much going for me Some people never believe the...
    HUMAN2BME HUMAN2BME 26-30, F Oct 10

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    I have the illnesses of bipolar and panic/anxiety disorder. I also have damage in my right brain from an injury as a baby. I was not diagnosed until I was 47. This is because...
    Bibiana554 Bibiana554 56-60, F 1 Response Oct 5

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    Yes I have one. And I'm not ashamed. I can't be fat anymore so I will starve and purge what I do eat. I can't be fat.
    magicalabundance magicalabundance 31-35, F 22 hrs ago

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    Relapsing bad these past few days. My insurance isn't covering my day treatment anymore because I need more help than they're providing. Not sure what my next step is going to be...
    misanthropemeow misanthropemeow 22-25, F 8 hrs ago

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    In the beginning of 2012 I was diagnosed with anorexia. Through lots of effort and struggles I recovered in the summer of 2013 through hospitalization. For quite a while I was...
    katsrecovery katsrecovery 16-17, F 1 Response 7 hrs ago

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    Just so ya know: this has a happy ending. Yesterday, at a marching band competition, the girl working on the prop in front of mine said she felt like she was going to be sick. I...
    Shepfax Shepfax 16-17, T 6 hrs ago

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    I hate it that I'm alone. I hate it that I can't look at myself in the mirror. I hate it that if I were to die today, right now, nobody would miss me. I hate my dreams because they...
    betelgeusex3 betelgeusex3 22-25, F 3 Responses 2 hrs ago

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    Because they say i have it. And baffled leads to curious. And curious leads to researching. But do i trust research done by them. Some. All Never. Rapid cycling...
    Livyn4pals Livyn4pals 46-50, M 9 hrs ago

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    I was diagnosed with seizures I also have pots which is a heart condition it has really been tough for me to adjust to it all it just seems so unfair I have no life I mean I have a...
    Daiseyhope Daiseyhope 18-21 3 Responses Oct 8

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    It sort of feels like dying, while it is happening. It's happened so many times, that I'm becoming less and less scared of the seizures and gradually less ashamed too. There is a...
    GreenButtercup GreenButtercup 36-40, F 2 Responses a week ago

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    Life changing: When I was 12 going on 13 I was extremely ill, I was being bullied constantly by many gangs male and female alike. I end up limping my way around as all my joints...
    LLOYDX LLOYDX 31-35, M 6 days ago

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    Hello, I was recently diagnosed with Borderline Personality Disorder. I am really freaking out about it. Since I was 18, I thought I had Bipolar disorder and now I am 25 and they...
    SouthernBella89 SouthernBella89 22-25, F 1 Response 3 days ago

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    My life goes up and down, up and down constantly. I'm all over the place, never quite sure what I'm feeling at any given point. I've never been diagnosed, but my mom has bipolar...
    casuallyscreaming casuallyscreaming 16-17, F Sep 22

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    I decided to say my story about my Depersonalization Disorder. I began to be really depressed when i moved away from my family and really good friends. I got into this horrible...
    A0927T A0927T 16-17, F 1 Response Sep 22

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    and it's taken over my entire life. When I read about others having the disorder, I shift from feeling comforted (when I am relating to their symptoms) to utter hopelessness...
    jasiilovely jasiilovely 22-25, F 4 Responses Sep 30