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I Have Psychogenic Non-epileptic Seizure Disorder

Personal Stories, Advice, and Support 84 People

    To all PNES Suffers, Sometimes it can be just

    so easy to run, climb the fence that keeps it all in. The boundary in which is home to all our thoughts, feelings and emotions. The boxed up memories stacked in the garage; hidden passage ways to our inner most self. We climb the fence to run/escape from our problems which maybe...
    VolunteerMouse VolunteerMouse 26-30, F 1 Response Sep 12, 2015

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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 56-60, M May 31, 2015

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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 26-30, F Jun 14, 2015

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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 4 Responses May 16, 2012

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    After having two bad seizures

    and coming to on the floor. I remember what I felt about my PNES just a year after my diagnose and how much I have changed because of it. In 2013 if I was asked about my PNES I would have told you that as a PNES suffer that: PNES is like, in my opinion as a PNES suffer, it's...
    VolunteerMouse VolunteerMouse 26-30, F Jul 29, 2015

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    Hi My new post can be found on my blog.

    It's titled: I don't even remember that text message. You can find my blog at: volunteermouse.wordpress.com Thanks Mouse
    VolunteerMouse VolunteerMouse 26-30, F 1 Response Aug 4, 2015

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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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      I am still posting about my PNES

    and other subjects now I've managed to fix my laptop after it crashed. I have now started to blog about my PNES and other subjects in order to help as many other people going through what I am going through/ been through in my life. My blog can be found at: volunteermouse...
    VolunteerMouse VolunteerMouse 26-30, F Aug 2, 2015

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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 26-30, F 2 Responses Jul 6, 2015

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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 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 26-30, F Jun 26, 2015

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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 26-30, F Jun 11, 2015

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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 26-30, F Jul 5, 2015

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    I'm at an all time low.

    I'm achy all over from four seizures I had yesterday. I'm depressed now while stress and anxiety are the cause of my seizures. It was suggested by my mental health counselor to check-in to an inpatient facility to help with the depression. I have fears and other reasons keeping...
    azureskies32 azureskies32 46-50, F 2 Responses Sep 11, 2015

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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 26-30, F Jun 20, 2015

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    A few days ago I watched

    as my coach driver collapsed well dealing with a group of passengers. It was late at night at a deserted bus station; one minute talking and the next minute he was down on the ground. Watching paramedics treating him for a suspected heart attack. To the realisation that was a...
    VolunteerMouse VolunteerMouse 26-30, F 1 Response Nov 9, 2015

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    I have been asked does PNES ever stop?

    Truthfully given that the condition affects suffers in different ways. After reading a lot of research and accounts from suffers from the UK, USA and many other countries. Some of these suffers have been through CBT or have done the recommended self help techniques for example...
    VolunteerMouse VolunteerMouse 26-30, F Jul 13, 2015

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    Instead of telling people I have this

    particular condition because it is difficult to explain, I simply use the following analogies: My brain has been rewired by a drunken technician and it has a tendency to short out. I have an invisible stalker armed with a TASER, and do not know when, or where, he is going to...
    Solitaireman Solitaireman 56-60, M Oct 16, 2015

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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 26-30, F 1 Response Jun 28, 2015

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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 26-30, F Jun 20, 2015

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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 26-30, F 2 Responses Jun 27, 2015

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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 had a great day out of town yesterday expect

    when it came to eating out. A supermarket café was the location and what happens when I decided to eat out? Well, I had a seizure and the chips went flying. I hoped, really hoped that no one had noticed what had happened. Expect the next table to us containing a group of...
    VolunteerMouse VolunteerMouse 26-30, F Oct 2, 2015

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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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    A few answers to a few questions I've been

    asked. *What is NES? Answer: NES stands for Non Epileptic Seizures another name for this is NEAD (Non Epileptic Attack Disorder). *What are the types of NES? NES is divided into two types. Answer: These include: Organic NES and Psychogenic NES (PNES). *What is Organic NES...
    VolunteerMouse VolunteerMouse 26-30, F Jul 10, 2015

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    Today I learnt something

    which I never realised was happening. Every PNES suffer whether they have only just been diagnosed or living with our condition for years try to find a way or ways of living with it. I myself have my own techniques that I have been using for a while now including: listening to...
    VolunteerMouse VolunteerMouse 26-30, F Sep 12, 2015

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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 have started to keep a diary of the days

    and even the numbers of seizures I have. To be honest looking at this diary is really shocking. I've had days where I've had up to five/six seizures in just one day. I've been listing also every injury I have ended up with because of my seizures. I'm lucky that every time I've...
    VolunteerMouse VolunteerMouse 26-30, F 1 Response Sep 12, 2015

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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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    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 26-30, F Jun 11, 2015

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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 26-30, F Jun 11, 2015

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    I was recently asked regarding the first aid

    performed when someone has a PNES seizure. It is important I would say that everyone knows how to perform first aid on someone who has a PNES seizure in front of them. The first aid is just like the first aid you would carry out for a person who has a epileptic seizure. The...
    VolunteerMouse VolunteerMouse 26-30, F Sep 13, 2015

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    I have recently been diagnosed with PNES.

    At first I was diagnosed with epilepsy but after my video EEG they came to the conclusion that it is PNES. I'm glad that it is not damaging my brain, but it is damaging my life. I currently finished nursing school and just became a licensed Registered Nurse. I had been working...
    RNgirl23 RNgirl23 22-25, F 1 Response Jul 15, 2015

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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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    My great aunt who's health isn't great at the

    moment has decided to not let any one else become as bad as she. She has decided to focus on the health of our family. This includes me. She asked my aunt what I had. She openly admitted that she didn't know what it is. So my great aunt asked me and I straight away said I have...
    VolunteerMouse VolunteerMouse 26-30, F Oct 2, 2015

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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 26-30, F Jun 28, 2015

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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 was diagnosed years

    after I first started noticing that some thing was wrong. I collapsed in the girls changing rooms in year 11 after a pe lesson. But my GP said it was nothing. A year later during an exam at college I passed out well sitting at the desk. The teaching staff raised concerns that I...
    VolunteerMouse VolunteerMouse 26-30, F Jul 21, 2015

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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 26-30, F Jun 14, 2015

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