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I Have Psychogenic Non-epileptic Seizure Disorder

Personal Stories, Advice, and Support 73 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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    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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    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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    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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    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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    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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    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 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 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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    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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    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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    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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    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 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 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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    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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    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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    Sad!!!

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

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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 2 Responses Apr 4

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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 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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    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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    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 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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    Related Experiences

    First time we realized when I was 5. I passed out while I was watching cartoons. Once my sister didn't realized what the hell happened. But she decided to take me to the neurology...
    gregoryraven17 gregoryraven17 18-21, M Nov 9

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    I was diagnosed with ADD when I was in 2nd or 3rd grade. Grew up knowing my life was not going to be easy. I took my meds everyday that soon made it that I couldn't sleep. causing...
    kaylavene2016 kaylavene2016 26-30, F 2 Responses a week ago

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    Hi I have BPD, PTSD and bipolar disorder. I was wondering if someone on here that is also suffering that may could help me. I'm miserable. I am on an antianxiety and antipsychotic...
    WolfOfDreams WolfOfDreams 22-25, F 1 Response Nov 6

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    Depression is a horrible thing to get.. Its like 1 step ahead of suicide and self harm. You could have Panic Attacks or Anxiety Disorder. No one seems to really understand what you...
    TrueStoriesBro TrueStoriesBro 18-21, F 1 Response Nov 12

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    I was first diagnosed with transverse myelopathy in 1999 and my neurologist at the time gave me gabapentin and told me it would eventually go away and never come back. Well, it...
    manypenguins manypenguins 56-60, F 2 Responses Nov 14

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    Had a seizure at work last night.. Wasn't a bad one but still bit my tongue but didn't get much of a headache! First one in 3 months though so that's a new record. I'd probably say...
    sjt127 sjt127 18-21, F Oct 28

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    i have a mental disorder and i found out when it was too late. i dont know if i am just an idiot ir have a mental disorder.
    unlovednbroken unlovednbroken 18-21, F 1 Response 22 hrs ago

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    I have taste when I smell things. Give me a rose and I will tell you its bitter, because it is. Tear of the petal put it in your mouth and chew it, it will be bitter. I only have...
    Gr3mL1N Gr3mL1N 31-35, M 22 hrs ago

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    I have been having seizures for almost a year now. I am 23 years old and I was just reciently diagnosed with CD. My mother has no idea what to do and I am completely baffled by the...
    blackpearl0618 blackpearl0618 22-25, F Oct 29

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    I don't think I fall under the clinical disorder, but I find it very difficult to reintegrate back in to socializing after I've been isolated for a while. This happens a lot when I...
    starasong starasong 22-25, F Nov 17

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    So, I am an American teenager and I believe that I have multiple psychological disorders. After reading and researching a few psychological disorders after being told that I may...
    JoeTheMessiah JoeTheMessiah 18-21, M 4 Responses a week ago

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    I feel like parents should stop being over protective and stop sheltering their kids so much. I didn't come from an overprotective family - and neither did half of my friends...
    sugarcakes143 sugarcakes143 18-21, F 8 Responses 15 hrs ago

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    GID = Gender Identity Disorder. I was born with this condition. This condition is when someone feels as tho they were born into the wrong body. Their mind is one sex but their body...
    EternalLuminescence EternalLuminescence 41-45 27 Responses 12 hrs ago

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    As a kid I was mentally abused by my father. Recently he has told me that selective mutism runs in my family.now he is trying to "cure" me of it. I am laughing. He is feeling guilt...
    Supercat8835 Supercat8835 13-15, M 5 hrs ago

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    A few weeks back I was in the hospital for 5 days (spent 4 days in a mental unit of the hospital and a day in the ER) and while I was there I was diagnosed with anxiety, 2...
    sadly203 sadly203 18-21 3 Responses 9 hrs ago

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     Its been about three months since my last seizure. I'm expecting another one soon. I normally have them about every three months now. There has only been one time where I...
    Alisaperne6446 Alisaperne6446 18-21, F Nov 12

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    I don't know how many times I have been in the hospital, but I have been through 26 brain surgeries, 2 seizures and a grand-mal seizure. I got kicked in the head by a colt (or...
    deademotion11 deademotion11 22-25, M 6 days ago

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    Sometimes I think to myself I might be happier if I had faith, hope, beliefs. I did at one point. Then I discovered I had a mind of my own, used for processing thoughts and ideas...
    Justjonathan Justjonathan 16-17, M 1 Response Nov 13

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    ~20 Years Later~ . So, that guy I dated when I was 16-17 yrs old and again when I was about 20-23 yrs old (cause I thought he might had changed during that time but didn’t...
    OlivePhire OlivePhire 36-40, F 2 Responses 5 days ago

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    I hate it,just been on E.R. this morning,cause of epy seizurre,got a shot against seizurres and infusion with vitamins B1 and B6 in it,layed in hospital bed,listened to an old lady...
    00pleasehelpme00 00pleasehelpme00 18-21 2 Responses Oct 30

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    i have had epilepsy since i was a young kid at school. thankfully i've not had any epileptic fits since i was a kid as it's been under control with my medication.
    GirlyAndrea1987 GirlyAndrea1987 26-30, M 1 Response 2 days ago

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    I was diagnosed with borderline personality disorder about one month ago. Borderline can consist of emotional disegulation, anger, disruptive interpersonal skills and other things...
    sarahcas sarahcas 22-25, F 1 day ago

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