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I Have Psychogenic Non-epileptic Seizure Disorder

Personal Stories, Advice, and Support 78 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, 2014

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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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    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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    Why is it people always assume that

    because you have seizures that your on medication for them? I have PNES and in the UK we don't treat the condition with medication because Anti epileptic drugs (AEDS) don't work on the condition. As it's not epilepsy.
    VolunteerMouse VolunteerMouse 22-25, F Jun 20

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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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    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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    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 May 31

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    I may have had a seizure during an important

    lecturer. But I am not going to let my PNES stop me from showing people what I can do. I'm spending the summer doing volunteering with an important organisation which works with young people. I hope to make a difference and help others who need it.
    VolunteerMouse VolunteerMouse 22-25, F 1 day ago

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    To any one with PNES I would love to hear from

    you. I am trying to use my posts not just to teach people who don't know about the condition. But to also reach out to other suffers. Please feel free to message me because I understand just how much the condition can get you down. Also how hard it can be to live with it. Also...
    VolunteerMouse VolunteerMouse 22-25, F 1 Response 16 hrs ago

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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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    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 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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    Some days my Pnes does feel like it's winning

    and other days I have the strength to tell it where to go!
    VolunteerMouse VolunteerMouse 22-25, F Jun 14

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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 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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    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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    Hi, I am 25 years old

    and was diagnosed with Pnes in 2012. I've only now after three years begun to come to terms with my diagnose. I don't tell people I have the condition but I have told my family. They don't really understand what it is I'm going through and don't like to talk about my condition...
    VolunteerMouse VolunteerMouse 22-25, F Jun 11

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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 3 Responses Apr 4, 2014

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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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    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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    Thank you to everyone

    who has viewed my posts about my PNES and other subjects. All the messages, hearts, responses and comments received mean a lot. I have met some really nice people on here. So thank you for your continued support and especially allowing me to just be able to talk openly about my...
    VolunteerMouse VolunteerMouse 22-25, F 1 Response Jun 28

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    I believe that people

    who don't have PNES don't really understand what it is like for us who suffer with the condition. I believe that in order for others to understand what PNES is will involve all suffers being open and honest about what the condition is and how it affects them. Yes, it's hard to...
    VolunteerMouse VolunteerMouse 22-25, F Jun 20

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    My Pnes is the worst

    and also the best thing about me. Since my diagnose three years ago my personality has changed. I've gone from being quiet, shy and didn't really talk much. To being very talkative and definitely not shy any more. I've learnt what triggers my seizures and what to do when one...
    VolunteerMouse VolunteerMouse 22-25, F Jun 11

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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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    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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    I found that one technique

    that I currently do myself helps with my seizures. If you feel that your going to have a seizure or know your in a situation that could trigger one then this I have found can help. I call it my 'go to song'. It is basically one of my favourite songs that I find that when I know...
    VolunteerMouse VolunteerMouse 22-25, F Jun 26

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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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    Today I discovered that lectures

    and seizures really don't mix. Especially if you have one right in the middle of a very important lecture.
    VolunteerMouse VolunteerMouse 22-25, F 2 Responses Jun 27

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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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    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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    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 2 Responses Feb 14

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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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    To everyone who suffers with seizures

    whether they be PNES, epilepsy or both. Or you know someone who has seizures please make sure that you or the person you know are aware of Sudden Unexpected Death in Epilepsy (SUDEP). Many people die every year because of SUDEP. So please remember that if you know someone who...
    VolunteerMouse VolunteerMouse 22-25, F Jun 28

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    Sad!!!

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

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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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    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 was asked by someone a few days ago

    if it was terrifying to have a Pnes seizure? I had to quickly say it was. Because if I was completely honest with them about how having a seizure makes me feel and how much I hate myself every time I have one. I would have probably have scared the person off.
    VolunteerMouse VolunteerMouse 22-25, F Jun 14

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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 have found that remembering the past

    and confronting it has helped me to come to terms with it. I've stopped blaming myself for certain events that I've been through that were out of my control. I can't to be honest say that I could ever go back to being the person I was before my diagnose. Because if I didn't have...
    VolunteerMouse VolunteerMouse 22-25, F Jun 11

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    Well, hi there, fellow sufferers :D I bet your sleep schedule can't be more f*cked up than mine! I have something called Circadian Rhythm Disorder or Internal Clock Disorder. I...
    sweetsnake sweetsnake 22-25, F 2 Responses 1 day ago

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    If people stopped complaining And give more attentions And care And love . Allot people with ( disorders 😣i hate that word) dont have to take meds , so they Will be accepteble...
    Beaubuck Beaubuck 36-40, M 1 day ago

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    I was just recently diagnosed with schizoaffective disorder along with OCD, generalized anxiety disorder, and PTSD....I've kept silent about my issues my whole life due to things...
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