dis-sociated - The first feature documentary on dissociative seizures (NEAD, PNES)
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- เผยแพร่เมื่อ 1 ก.พ. 2019
- Trigger Warning Flashing lights from 09:15 - 09:30
dis-sociated follows the lives of five individuals living with dissociative seizures, also known as Non Epileptic Attack Disorder (NEAD) or Psychogenic Non Epileptic Seizures (PNES). Through their testimonies and the thoughts of leading specialists, dis-sociated seeks to uncover some of the mysteries around this baffling and misunderstood condition.
Join in the conversation #dissociateddoc
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Directed, Produced & Edited by Clea Martin Vargas - ภาพยนตร์และแอนิเมชัน
I posted this comment on another site for PNES. I was seeing a neurologist after I developed seizures in my 40's. For 2 years he told me my seizures were pyschogenic nonepileptic seizures ( PNES) since my seizures did not show up on EEG. He kept me on seizure meds however. After my second time of being flown from my hospital for what they said was status epilepticus ( I was sedated and intubated) because they could not not control the seizures. They would fly me down to where my neurologist is located as we live in a small town with no neurology. He would tell me it was all in my head. I decided to get a second opinion with an epilepsy clinic. They informed me a lot of their patients seizures do not show on EEG. It is highly recommended to have someone record the seizures so they can see what they look like. After seeing them and hearing my my symptoms before, during, and after it was discovered I had epilepsy. I was having several focal seizures everyday that were eventually leading to grand mal seizures. I was put on two different meds now and have not had anymore grand mal seizures for a year. I would like to stress that I am in no way saying a person should feel embarrassed or ashamed if their seizures are nonepileptic. Nonepileptic seizures are a serious medical condition. I just like to tell my experience because if I would not have advocated for myself I would still be having focal seizures everyday. I feel that it's definitely worth a second opinion with an epilepsy clinic to help control seizures if possible.
Thank you for sharing your story, my daughter just got diagnosed with PNES in April this year after being hospitalized, and is now in the hospital again and the ER is so of these hospitals have no compassion and squeeze my daughter had so tight where her IV was and cause so much pain and blew or vein. I want to as to do another EEG she stop breathing with this one
May I ask what meds helped your seizures subside?
Thank You for educating us! Hope you're doing and feeling better!
I have had the same experience with my neurologist insisting my seizures were non-epileptic seizures even after several abnormal EEG results. I have been intubated twice in the last year and hospitalized 3 more times without intubation. In Jun 2022 before all this happy Ed I had an abnormal EEG after haling strange seizures and also Drop Attacks since a child. I was diagnosed with Epilepsy and put on medication immediately. I had no problems and no seizures from then until July 2023 when I went into status epilepticus, intubated and had abnormal EEG, buat was then extubated Twi daya alter when my neurologist said I was fine and they were not epileptic seizures. She took me off all medications and then I was hospitalized again in Sept 2023 after severe status epilepticus with aspiration pneumonia causing me to develop septic shock, in a coma for 2 weeks and nearly not surviving. She still insisted on non-epileptic seizures disregarding all abnormal EEGs done in that time. Finally after 2 hospitalizations again this year due to exhausting daily tonic clonic seizure episodes and my husband having to use rescue meds to abort them (which doesn’t work with PNES, confirmed by a top epilepsy specialist in my official second opinion) I got an official second opinion and have the correct diagnosis and correct medications. My seizures and episodes are now reducing by the week after up titration of the AED meds. If you have a gut feeling something is not right, always seek a second opinion! Advocate for yourself, absolutely ❤
It's very liberating to find out that this condition has a name and an actual diagnosis. I've been in therapy for over six years and i've been having mild dissociative episodes for years. Sometimes out of nowhere. These past months i've had about ten of these really severe episodes of dissociation where i'd just stand there, couldn't move, couldn't stop staring at some particular spot. I can't talk or truly understand what people are saying either. I start shaking and get these random and repetitive body twitches. For example, if i want to walk somewhere, my legs suddenly act up as if they're trying to comply but phisically can't move. Or i start walking backwards instead of forwards. Truly a horrifying experience both to have and to see. I get twice as nervous when someone is watching because I look like a broken robot. Most of these seizures happen when there's an argument at home. I think it's a severe answer to stress in my case. It's the little things that pile up and when you add a tense situation at home, it sets off an episode. Sort of like a computer having too many windows open and freezing because of it. I jokingly say that i've graduated from panic attacks to a full blown body shut down. For now i'm just glad i'm not the only one having these episodes. I had never heard of it before so it was very strange and scary at the begining and very hard to explain to others. Lots of love to anyone who is experiencing this!!
All doctors - A&E, Wards, G.P. Ambulance crews especially need to be made aware. Emergency services need to remember care and compassion when dealing with N.E.A.D. Thankyou for the comments from Carol in the video
yes you are right, the reality is most of them are condescending .
they really do need to, i had one after a couple years of not and pretty sure they thought i was faking it
I had an EMT recognize my condition as phycogenic yet also flat out called it "attention seeking behavior" with a very harsh tone, as if it were conscious manipulation... While I'm laying there shaking and feeling terrified.
I reached out to many different doctors, never got help. I had to do a lot to figure it out on my own and be my own psychologist/psychiatrist.
Yes ... THANK YOU! I was recently made me of by nursing staff. I was accused of being a drug addict and treated like I was faking it.
It was such an awful feeling.
In absolute agreement with you on this one.
Very encouraging to rewatch and see my progress and the strength of others sharing their stories as we managing living with this condition.
I want to thank you for sharing your story, Anthony Roberts, and congratulations on your marriage. The information on dissociative seizures is new to me. I hope you the best on your life journey. Knowledge empowers insight, understanding, and compassion. www.incmedia.org
I just started having these seizures in October and I want to get a job but it seems like a can't since everytime I'm in a big crowd I have small ones because of the stress. How do you function? I feel like I cant I was having them 13x a day now it's more 1or2 a day.
I just had one on the floor of the bathroom I'm so alone and I applaud your bravery
@@karencarney7595 Sorry to hear this Karen. Hope you are managing better now? I appreciate your comments. We are all so strong dealing with this day to day.
Have you ever been tested for Lyme disease? The musculoskeletal symptoms combined with neurological symptoms are eerily similar to how Lyme can present. I say this from my own experience with Lyme and dissociative seizures. I have been diagnosed late stage, as the medical community prefers to ignore this illness in my country for the most part. If you have multisystemic issues, I would suggest checking into it.
Please every GP practice in UK show this on training days. Get FND aware.
....."when you have given a name for you illnes, it is half the battle."....
I have been having these episodes since October 2017 and this is the first time that I haven’t felt utterly alone in the symptoms. Thank you for making this excellent documentary and thank you to those who were willing to share your stories.
its my wife who is in the film she has been treated so bad there r good doctors and nurses and bad they forget your eyes r closed but u can hear them talking about u they find it funny it hurts what they say be strong
@@grahamjackson3213 Sir, it is so sad that happened to your wife. As you stated there are good doctors and nurses too. I hope you and your wife the best. Knowledge empowers insight, understanding, and compassion. www.incmedia.org
I've only recently found out I have this condition, I have had it all my life. I thought it was normal to feel so disconnected from the world. I've thought I was so crazy for so long and I haven't been given the right medical attention at all. If anyone has any recommendations or if anyone else has this condition out there please let me know. I would love to talk to you. I am currently in bed, trying to recover, absolutely zapped of energy. This video is giving me strength.
To all in this comment section, I suffered severely with this for many years and I tried many medications that all only make it worse because they only suppress you and suppress symptoms, but not treat the root cause. I have been seizure free for a few years and over the years it became less and less frequent for me to have a seizure with what I found worked. In high school I used to have up to 20 seizures a day. The seizures started around 12 years old for me, after enduring many different types of severe trauma. I'm not going to go into my whole story here, but I will say this, if this helped heal and cure me... I believe it will work for anyone! Here is what I learned, through prayer in the name of Jesus you can command circuits in the brain to be healed and by commanding the electrical 'current breakers' to go the right way. Next, marijuana and more specifically CBD heals and helps regrow brain cells, however there are very helpful benefits in the THC as well, that I would recommend using at night or when you know you don't have to go out and do anything. Seizures cause brain damage, and CBD can actually re-grow new brain cells and heal your brain, and if used regularly will eventually help cure you. But I cannot tell you enough how vital the role of God/ Jesus Christ is in all of this and the power of prayer and just sitting down to have an inner walk through and talk with God on the regular and inviting God's Holy Spirit into your life. States of deep focused silence in prayer with God are so key, and then combine it with the good green healing herb and CBD oil that God created, the more natural the better! Also diet was big for me, eating organic, keeping the immune system up, and making sure you have a high lean protein diet along with organic fruits and veggies. Basically, a ketogenic diet... Stay away from high processed foods, junk foods, and cane sugar. Your brain is made up of gray matter and fat; the gray matter is the conduit for electrical impulses to travel and carry information through the brain, while fat in the brain acts as a insulator and a ground; like tires on a car will keep you from getting electrocuted when there is a lightning storm outside, (which is a good thing in that case), but the fat in your brain will insulate electrical impulses from passing through.. Which in turn limits electrical currents from flowing in the brain, which is not healthy and will hinder your recovery, which means, stay away from sugar and empty carbs(like wheat pastas, breads, and processed foods in boxes) that produce empty stored fat. Your brain is like a muscle, exercise it! Try new things, go hiking, play a puzzle game, learn something new every day... This will help grow and exorcize the gray matter/ muscle in your brain. So replace sugar with honey wherever you can. if you need sweets, eat real dark chocolate that is good for your heart. All foods and vitamins that are good for the heart and blood are important. Also take vitamins that are good for the nervous system! The nervous system is intrinsically connected to the electrical synopses in the brain, so nervous system health is important. Stay away from high proofs of alcohol and if you are going to drink alcohol, keep it very minimal. Also, if you're craving salty, listen to your body, but choose a healthy option and DEFINITELY add pink Himalayan sea salt to your diet- There is a very good reason, but you can do some of your own research. Here is a list a vitamin supplements I take on the daily that will help < Vitamin D3, Folic Acid, Vitamin C, Vitamin A and K(or just carrot juice), Fish oil for Omega 3, Kelp with iodine, Elderberry, Zinc, Turmeric with pepper, Papaya enzyme (for digestive health), and Iron (for red blood cells) (however, depending on you white to red ratio blood cell count, you may not want an Iron supplement for a higher red blood cell count). Also look into Chlorella. Alright, over and out! God bless!!!
This documentary is so empowering for people like me who have been suffering from this condition for the last three and a half years . I felt so isolated and alone in my journey to get a diagnosis as doctors do not acknowledge or understand this condition because all the tests I have been through doesn't show nothing physically wrong with me. I thought I was going crazy . Anti- epilactic medication did not work for me. Actually it was making it worse. The prevalence of this condition is unknown and underesearched and therefore doctors are not trained to recognized , diagnose and treat efficiently this condition. In the mean time we are losing chunks of times from our everyday life, time away from our loved ones because depending on the frequency and the lengh of each seizure the brain needs a lenghty period of time to recuperate. My recovery time is between 24-72 hours to be able to be fully functional without speach , hearing or visual impairement. I believe there is more research to be done by neurologists to be able to create awareness and understanding of this complex condition. Thank you very much for creating awareness.
Hope you are doing alright mate? Its really difficult for people to grasp unless they know you and see you change. I'm struggling to deal with myself atm. Diagnosed with PTSD and ADHD I think there is a link but everyone is slightly different. I have finally got meds I'm three days in. Insomnia has ruined my life the doctors have finally gave me hypnotics after being sectioned under mental health act. Peace and good luck.
Are you ok now
Actually i'm from pakistan and my younger sister is suffering same problem
you couldn't have said it better. i love hearing about my condition or other peoples experiences because i do feel alone, and nobody really understands it.
I just discovered this. And that this is a thing. A real actual thing that they can see happen in your brain. Since getting out of long term mental health treatment, I’ve been having these 3-4 times a week and not known why. We call them dissociative episodes because it’s an episode where I dissociate, but OH MY GOD it’s a thing that happens to other people. I shake, I go nonverbal, I rock back and forth and I say no no no over and over. I’m still present and aware but I can’t explain to people what’s going on. You have no idea how relieved I am that this is a thing with a name
I don’t know if they can see it happening in the brain? That’s why they are so dismissive and clueless about it in the general medical community
Sorry to disappoint you, Hannah From 2 Years Ago, but we still don’t have any treatment for it, and we had to go to the ER last week because of one. They can’t detect it in our brain, and they discharged us because our EEG was normal💔 comin up on 3 years of PNES.
Thank you for this documentary. I have come to believe that these seizures are from represssed trauma. The seizures started at abaout the same time I left my husband because of abuse. I have big blocks of time that I don't remember. A flash of memory would come every now and then, This is when the seizures would sometimes start. Everytime after a seizure I feel a little lighter, like I got rid of some bad memories, trauma, whatever. I just cant tell you how much it means to know that I am not the only one. Thank you for the people that were williing to speak out.
Kathy dear, I can relate so much with the seizures acting as a way of my system to gain back my memory of abuse... but after many years I notice it is for me as an automatic coping mechanism that happens any time I feel an overwhelming fear, stress or conflict; acknowledging the we are not alone, gives me hope🙌
I explain it like this to people:
"Some people get migraines. They need to sit for hours in a dark room with a cold pack on their forehead. Well, I get that too, only my headaches are seizures that only last a few moments. No one knows why people get migraines, and it's the same with me. I'm just lucky mine are short and it's a way of my body telling me enough is enough"
Free World that’s interesting. Thank you for sharing. One of the hardest parts of dealing with this has been finding the right language to explain it.
im suffering for at least a few hours if i get these seizures. Its horrible. I get a weird feeling going from my head through the rest of my body and i get photosensitivity and i get sensitive to any noise. When i have this, i cant think about anything ir it will get worse. My eyelids are nearly closed and stiff, if i close them i will get instant tonic seizure. If i open them i will get instant seizure too.
The only thing which is helping me is Lorazepam. But i cant take it because i dont want to get addicted.
Its so bad :(
@@lordofweed are you okay
So true.
@@lordofweed I really shouldn’t give advice but have you tried cbd?
Tears are streaming down my face, I finally feel seen and understood. Thank you so much for this, thank you.
Thank you for everyone involved in this documentary. It truly saved my life. I've been having these episodes and seizures for 6 years now and I'm based in the Caribbean. I've been made to feel like I've been faking or making up what's happening to me and when I came across this documentary my life was changed. Having a name put to what's happening to me has changed me forever. Thank you so very much
Thank you for your kind words Marshalee. So happy to hear it helped you. Take care
How very brave to tell your stories, this should be mandatory training for all hospital staff, I will certainly be promoting watching this documentary, upmost respect to all involved.
I agree, karen Roberts. Knowledge empowers insight, understanding, and compassion. www.incmedia.org
I’m only 15 minutes in to this video, and it’s making me so emotional. I’ve been diagnosed with NEAD for about 3 weeks now, after 4 years of seizures. It’s just incredible to hear and see other people talking about what you’re going through as well.
It feels so lonely sometimes, and I’m connecting so much with each and every one of you. I hope you’re all doing okay nowadays, I’m thinking about you all ❤️
I know what you mean! I was actually able to finish the sentences of some of the people speaking in the documentary, because that’s exactly how I described it, but never had anybody else know what I meant. And I got so mad hearing things like being accused of seeking attention, and the doctors not listening, because this is what interferes with diagnosing our extraordinary conditions! It was quite triggering, however, and some of my limbs got wildly involved 😂, so I’m saving the other half for later. I need to rest first.
I have FND, NEAD as well as severe hyperacusis. I really identified with the wife in the film. As a military veteran I take a lot on and stay tough without relying on others. I look forward to sharing this with friends and family as it quite nicely explains whats happening. Thank you.
Robin Letellier I have it too can I ask if you can work? I have been having trouble finding anything I can achieve as a stable work life
Thank you so much for making this documentary. I was only recently diagnosed, but it's believed I've had it for 30 years. I will definitely be showing this to my friends and family x
I can't believe it! So many similar experiences! For years i was made to feel alone by doctors teachers, and everyone but my mum, to know now I'm not the only one means the WORLD to me, thankyou for this!
I felt so bad when she said sitting in the ambulance of two people that don't believe you it's the worst feeling when u know ur telling the truth and especially about something like this that is so hard for people to understand unless they know someone that has a similar set of seziser
i put a complaint in every time a doctor are ambulance crew dont belive me i report them to pals i dont care my name is carol i am in vidio gl
I never ever ever comment on TH-cam videos but I had to thank you for making this. I've been having seizures since the beginning of 2018 and its been so stressful on me and my partner because we haven't been able to get any answers. This helped explain so much and I honestly can't thank everyone involved enough. Knowing that I am not alone is truly comforting.
Dayna Keane-Dawes thank you! So happy it helped you, it’s exactly why the film was made. Take care
@@dis-sociated7105 I been having these episodes and I got an bump in my head and when I went to A@E they didn't do the scene for me and I went to my doctor for my epilepsy she said we cant do it and next day i had a very bad seizure but they called it non epileptic seizures so I'm just so worried why they didn't did what they should be doing
Just watched this and OMG , I waited 18 years to be told I had NEAD by my neurologist
For the last year and five months I’ve been struggling to find answers and info that was relevant to me THIS IS MY EURICA and I’m sending the link to everyone who has ever doubted me BLESS YOU ALL 🤗
i've only had this for a year and was recently diagnosed. I will be recommending that teachers/lecturers watch this because being a student is hard enough, a lack of understanding, knowledge, care and empathy makes it even harder.
Thank you so much!! I trusted my husband to see me in this vulnerable position and he called me crazy. Ever since then I questioned my own sanity...until now.
I was questioning my own sanity so much that I seen a Psychiatrist. I have PTSD, social anxiety, major depressive disorder, generalized anxiety disorder. Therefore, I just assumed it was one of these little burgers rearing its ugly head and not making any sense. But, he said none of my symptoms were mental or emotional. They are physical unfortunately. I was curious if anyone else that’s been diagnosed has ECG readings that show a long QT interval? It just popped up for me and I am curious about it. I know it can just kill you without any warning at all. This has me paranoid as well. I’m seeing Neurology in 2 weeks and I wish it was today!!!!!
Suffering for four years and nearly recovered ! I refused medication as no one understood it was the result of trauma . I say daily in meditation and allowed the sensations to move through me without resistance. I practiced both relaxation such as feldenkrais , qi gong and yin yoga to relax my nervous system and I triggered my fight response by boxing and flight by running to get me out of freeze . I danced for a year to free my body unconsciously . I did kambo to detox my system and that worked amazingly and I slept a lot . Also clean up the diet , take risks and breathe deep walking in nature every morning .
how did you get better; my life is coming to a grinding halt because of this
@@Sulldog47 I surrendered . Had a kundalini awakening and worked really hard . It was a really really long road life needs to come to a halt .
How can you dance? I Got paralises all over😢 every time i have Activity, the attack comes...and then i Just sleep
@stellaancimer8505 the pain was there for sure . I danced through the pain , I just let my body move and did what it needed to do . There's no easy route but all I can say is allow and surrender. Breathe . Sleep is your number one friend. The early days are tremendously painful but it does get better. Years later I am not fully healed but living a radically more calm life . Xx
@@katiestanley93 thank you, yes i would sleep all the time ;) i enoy dancing, but i get paralysis, so i have to be aware of what kind of activity i do, that is not too much..;) sleep is the Best for now 🙏
I'm so thankful for finding this and hearing others stories. I care for a veteran with NEAD. It's been so stressful for me to not have better help by our doctor to understand more. It's hard enough to get people to understand that he can't control it.
Thank you for putting up this excellent documentary. I have just watched it and can totally understand the frustrations of sufferers and carers alike. As a father watching my daughter going through this I feel totally helpless. As in the video there are times when it has been suggested by healthcare professionals that she is 'putting it on'. I see a long drawn out battle ahead of us. If this documentary in anyway highlights the suffering involved then that has to be a good thing. Thank you once again, good luck and best wishes to all those affected.
I was only diagnosed with this one year ago however I have been having seziures for 7 years . Been to many MRI machines or machines that look into your brain . It started after a big trauma when I was 13 years old . 2 years ago I nearly died in one of the seizures . I stopped breathing . My father nearly broke his fingers to get my tounge out of my throath . Then I found a doctor that knew about the disorder and gave me the right medication . I am now free of any attacks . Thank you thank you so much for this documentary . I finally feel seen and heard
Thanks a mill..in hospital for one and a doc accurately told me what it is...hadn't a clue what they were until now. God 🙌 bless !
THANK YOU FOR THIS VIDEO!!!! I have recently been diagnosed and it has been so difficult.
THIS VIDEO has by far been video yet. It has touched me and helped me understand I'M NOT ALONE. I also need to stop telling myself " am I faking this? "
Thank you!
Hi I am from Iceland and have NEAD and am thankful for your storys because I dont know anybody in my country that has this condicion.
Hi Marianna. Myself and Carol (in the video) came to Iceland on a cruise a few years ago. You live in a lovely country. We are glad this helped you. All the best, Carol and Graham
My daughter has been diagnosed with these after 5 years. Like it says in this video, no doctors wanted to know. We are now finally under a neurologist so fingers cross they can help. More medical professionals should be aware of these seizures as they aren't xxx
@scrumptious hiya hun ive been suffering from nead for nearly 16 years roughly, add me on facebook hun Gayle McCrea lets. Chat on inbox i will do my best to help you and yr daughter
@@gaylemccrea7030 yea thanks I will do. Xxxx
My Neurologist just wants me off his list. He won't recognise it and Says see you're gp. Being Hospitalised for two days is and being realised on Lamotraginei feel worried because my kids have seen it and say daddy's Brain has changed my daughter has regressed a bit and u blame myself, but I don't know it's happening to me. I lost my job because I tried to strangle a college and tried to climb and jump off a 30M platform. They never told me what happened for four days so the Hospital just thought I fainted. I had no clue it's only happened 5 times that I know is of. It's Pretty lonely place. God bless everyone.
I've been having these episodes since 2015 I sent this to my therapist who will hopfuly show my doctor this documentary makes me feel less alone.
As an NEAD sufferer this helped a lot.your amazing for helping us ! .
Hope there is more people sharing this
Hi me too nice nice to meet you
I feel seen. In a good way.
At the time of diagnosis, some 8-10 years ago, I didn't understand. All I could comprehend was that I wasn't Epileptic and that I was just "more susceptible" to seizures.
It wasn't until my latest seizure five days ago, when I spoke to my doctor and he said the keywords "Dissociative Seizure" that I started to understand a little more.
I just assumed that every 5 years or so, I would have one of these seizures and that I was overdue for the next one.
Listening to the people in this video, seeing the similarities in my own journey has been really helpful.
Thank you for your account and for reiterating that this is not something fully within my control and I am not weak.
Thank you.
I've been diagnosed with this recently at 27 years age. It is very scary and frightening. I get ashamed and embarrassed. I won't even go out the house alone. I have started having CBT therapy and it makes me think I am mad. Horrible emotions I feel inside me 😪i just want the pain to end.
@graceflynn-xt3hn are you fell any better?
I was undiagnosed for 4 years it was the worst 4 years of my life i almost lot my job i lost all my confidence then i was diagnosed the nead calmed down through meditation breathing techniques well being techniques my life is a lot better ,i have good days and bad days im back in work and doing a lot better try be positive guys get out the house it will get better .
I’ve had these for 24 years. It’s so difficult. This documentary has explained more than the drs ever have. Thanks
This documentary has so much power to it for someone like myself who suffers from FND. It took me so long and so many visits to the GP before one believed me enough and sent me to see a neurologist, at first I was misdiagnosed with epilepsy and treated with AEDs but when they made no difference I was referred to a hospital in the city to see another neurologist who was the first to utter the words Dissociative Disorder and began to makes steps to take me off the AEDs and to look for ways to help. Sadly for me, the diagnosis was almost five years ago and trying to get the help I need is extremely difficult with the long waiting lists to see the right people. Diagnosis may be the first step but when it comes to the treatment afterwards that is yet another uphill battle. Thank you soo much to those who made this and to those with FND on spoke about their experiences with the condition. Suddenly I don't feel so alone anymore so a genuine, heartfelt THANK YOU!!!!
Like many here, I am so glad that you are bringing awareness to such a misunderstood phenomenon. It’s been an ongoing struggle to deal with this, let alone receive a proper diagnosis. I’m hopeful, however, that the more we advocate for ourselves, the more progress we will make. Keep on keepin’ on, folks.
I had my most severe seizure to date earlier. Just reminds me of the struggle with dissociative seizures. Hope everyone is doing well💙💙.
I love everyone who took part in this documentary sharing their stories ❤️
Carol you are my hero 😇your words encouraged me so much.
May God bless you all and I pray the best for you and a seizure free life.
From one warrior to another ☺️
ty you very much I am fed up with my local hospital telling me it was in my mind thank god I met prof ruba he gave me so much hope and my gp his very good ty to my husband grham keep strong lou and stand up to these people xxx
@@grahamjackson3213 You are not alone, and know that many who shared their stories would be in the same place with hospital services. Our fight for clarity will help those new to this diagnosis. Love your fight Graham & Carol ♥
tyvm we have to work together
I just found out from my Neuropsychologist that I have Non-Epileptic Seizures. I've never heard anything about this condition. I never knew passing out and ending up in the hospital and rehabilitation were due to NEAD. I've falling and injured myself many times. I'm deaf-blind so I have no auditory or visual stimulus of an event about to happen. I recall one time that my wife was shaving me and I woke up in the hospital two days later with a breathing tube down my throat. I was scary because I the doctors could not communicate with me not with them. My legs and arms were tied to the bed. I didn't know what was going on. The doctors and medical staff made me feel as if I were crazy or that I had complete control over what was going on. Still unto this day, I have no recall of what happen,. There was no diagnosis or treatment. I was sent home only to end up back in the hospital. I've listen to the video, but still have reservations about the diagnosis. I'm now 65 years old and I've been experiencing what I thought were seizures since childhood.. I'm glad there is a form to discuss our experiences.
Shaving on the neck csn cause neurocardiogenic syncope and is is often misdiagnosed as non-epileptic seizure. Shaving on the neck can trigger it in some people because of a nerve next to carotid artery . I just wanted to let you know in case you never heard of it. There are several forms of NCS that lead to sudden abrupt pause in heart rate and/or blood pressure. Please look it up. This same drop or pause in heart rate can also happen hecause of a sensory nerve in the wall of the heart when the heart has low filling pressure because this nerve sends message to brain stem and can lead to sudden and abrupt drop in blood pressure and the worst is sudden pause or slowing of heart rate. Alsi it can effect myacle tone based on experiments in cats. By the time someone us checking tour vitals then they miss the abnormal abrupt change in vitals but symptoms can persist because it takes time to hook fully back up for sone. Or the changed heart rate can last linger. Not everyone has full syncopy but may just lose tone in muscles and suddenly you're on floor. Or there may be a slight convulsive movement if head or other brief movements like.Affects can linger. It is NOT a functional nervous disorder but is often misdiagnosed as such because by neurologists because it has features of a seizure sometimes but not exactly and is more sonething a cardiologist woyld know about.And not everyone has same look as it happens. Sudden hypoperfusion of blood to head and then reperfusion from trigger by vagal efferent . Again, shaving on neck is common trigger for it. There is another cause like when people see blood or hear bad news or sudden pain so that is called "central" neurocardiogenic syncopy. But that is different than the kind that is triggered by shaving or other kinds like peolonged stand with blood pooling in legs.
Muchísimas Gracias de ❣️ por hacer este video lleno de Conciencia y traducido al Español, aquí estamos abandonados totalmente. Comparto y millones de Gracias de ❣️
I can't thank you enough for sharing this!
I have suffered with NEAD for years, I also have DID and CPTSD so the seisures come hand in hand with both of those unfortunately.
Sadly no one else understands it and I'm often put down as an attention seeker so this is very uplifting and makes me feel real I guess
hi, im curious do u have seizures during switching alters in terms of your DID?
@@danniwalker8061 I don't personally but I know that is something that can happen dependant on the person and how their brain is wired
Hi, we have PNES/NEAD as well as DID and cPTSD (and other issues) and it took more than a decade to get this all diagnosed (and $250,000...) and this video has done more to help than all the doctors so far O_O
Decided to reply because we often do when seeing a mention of DID. Not too many folks out there like us :)
I don't usually post on here but thank you for making me feel less alone. So glad to know that I am not on my own with this.
This was so powerful for me. I gradually recovered over the years through therapy but I didn't have a name for what had been happening to me until a few months ago. I felt like the girls were telling my story.. how it felt, how people responded. Such a difficult time in my life it's hard not to feel angry that no one tried to help me or find out what was happening.
Exactly, right?! I have had the same GP for at least 30 years. I have been having these (I called them episodes because I didn’t know what they were)every few weeks, that are horrible. I black out, always end up hurt somewhere, make my clean home into a mess. During these I get very angry, which is not in my character normally. I say things that include actual words but don’t make any sense. If I didn’t hurt myself I would have no idea that it even happened. My memory terrifies me. Living alone and not having control over my mind/body is the worst thing I have ever been through. I pray to God in 2 weeks when I see neurology, they medicate me or have some sort of solution. Thank you for sharing your story with us. You have no idea how much it means to me. I felt so alone, and now I know I’m not alone.
Thank you so much to everyone involved in the making of this film! I found it very inspirational and have taken down many notes as someone with a recent diagnosis with FND. I appreciate all of you and there wasn't one story I didn't learn from - I wish you all the best!
Very interesting documentary. Good to see a diagnosis to what you have looked for for far too long Carol. Hard watching your seizure but so brave of you to have to go through it Graham , but as your family know, you go through it all together. Let's hope some answers can be found soon for this condition.
Thank you so much for this programme.
Thank you for producing this, it's comforting to know the challenges others face and the stumbling blocks we all must climb over.
This was great to see! Thank you.
So many people who receive this diagnosis feel lost in the conflicting jargon and misperceptions of others. Few people (maybe no one) in their social circle will know about it, and trying to explain a diagnosis that defies explanation I can imagine makes for great difficulty and feeling of isolation.
It's great that this was made so people who can see they are not alone, this is much more common than is talked about, and it should be talked about to smash the stigma.
Brilliant so much people have felt and experienced what i have - thought I was the only one THANK GUYS X
Thankyou so very much for this I'm experiencing lately and it's exhausting going through dissociative seizures and feeling so alone so thankyou ❤️
Thank you so much for doing this documentary this condition is so horrible it is making everything really hard for me at the moment I hope drs see this ♥️
I suffer Alott from what they termed Non epileptic seizures . But I do NOT shake or jerk . I basically FREEZE , and just blackout . I can be holding a cup of tea and blackout , when I come round im still holding the cup of tea . But latly I'm suffering from multiple blackouts daily . Its absolutely Ruined my life .
It's the same for me
Description same as me.
Ruining my life too you’re not alone
I am the same. I just seem to leave life behind and my mind goes walkabout. It’s horrible and extremely frightening.
That sounds scary and I'm sorry you are going through that.
Beware of diagnostic overshadowing, though. I hope that whatever it is it gets fixed.
I wonder if writing about your past would help you. It has helped many people before.
This is a great documentary, I've been living with this condition for around 15 years, only recently diagnosed, its good that there are other people out there like me, i felt alone in this problem for the longest time
Thankyou so much for this video, I've been told this is something I could be experiencing lately and it can be exhausting after it happens. I'm currently awaiting appointment at the neurogolgy department for brain tracing and a brain scan to find out more hopefully.
My husband has CRPS and FND including functional seizures. It is hard for him and on me and the kids. One of the hardest things is the way other people treat you and the lack of information about it. Even doctors are ignorant about it.
i’m 15 and i’ve had dissociative seizures for about and year and listening to these peoples stories is, not nice, but it makes me feel more believed. all the comments about attention seeking and the funny looks and judgements get to you and finally start to believe it’s all your fault and it’s horrible. i’ve never met anyone else with the same condition and i really wish i could talk to someone who shares the same experiences who i can talk to
I'm 14 and I also have them. I'm here if you wanna talk about it. I know I'm just some random kid on the internet, but we have to be here for eachother, you know? Basically, I'm here to listen if you need it.
Fantastic documentary! Must see and share.
For sure! Knowledge empowers insight, understanding, and compassion. www.indmedia.org
I don't know if this will help anyone, but I remember starting to have these at around 7 years old. I never got any treatment, so didn't eventually "outgrow" them for 20ish more years in equally large parts because my mother was abusive and didn't think that was something she'd caused and because (of that) I never knew I was sick
The part I think would possibly be useful is that I remember starting them deliberately as what I now realize was a way to relieve stress by going rigid and then releasing the tension. I think of them somewhat like the way cutting is described. They were always right on the cusp between voluntary and involuntary for me, and even seemed/felt like also a manifestation of hyperactivity. For the most part I was able to conceal them which I know is relatively inconsistent with the experience most people report but again I think it has something to do with having begun so early and deliberately.
IDK if my experience might be more typical for the pediatric population but mine wasn't random I know exactly what recurring situation (torture) caused the anxiety that first started them that was reinforced by continuing to dread anew when I had to get in the car with her. It was off the charts anxiety coming out sideways. I'm a 52-year-old male. I also hope this information might encourage anyone seeing it in pediatric patients to scrutinize the custodial caregiver VERY closely....PARTICULARLY single parents of only children. Few are better-situated to abuse more mercilessly.
Every one needs to be aware of these. I've had mine since boxing day 2017. Christmas day I was fine. When I was working boxing day work found me collapsed.
Later that night I was in hospital.
Ever since I've been in and out. Of hospital. I've had ambulance which are so understanding and others which are not. But In Australia, the hospital and ambulance have been good for me.
Found a team who has been willing to help. But other people aren't so lucky. Its because people don't believe something can cause a seizure without a that charge.
@@firstnamelastname6119 I know :)
I had dissociative seizures/PNES from when I was 4 to 7 years old. It always happened at night & woke me up from sleep. Also have C-PTSD & DID. I didn't used to know what was happening which was scary. Thank you for making this documentary & spreading awareness.
I’ve been suffering from deja vu, and when it happens I get disassociation with myself, it’s almost like I’m living in a dream.
I had my first one july 4th of last year. It really.. changes your life in an instant. I had absent seizures that had a small chance of developing and it did.
This is the first time I see a documentary talking about it, in France it is almost unknown by the doctors and even "specialists" don't really help you. Now doing better, I feel like the most I learned about the seizures was through understanding what my body was trying to say. I hope this disorder can get more visibility 'Cause it is so hard to have no one to talk about what you experience everyday, no one who can say oh me too !
BRO. IM SO SICK of my doctor because she will not take me seriously.
It's our way as little child to block the trauma because as little kids it's to much for us to handle so we handle it through day dreaming and denial and suppressing it until years later it's a form of temporary amnesia and yes I have had that and I do when I go to an episode as children we learn to seperate the memory by trying to escape from ourselves by trying to run from it through suppression of memories and so you don't have to deal with what is really happening at home and you learn to cope by trying to seperate from your self and in the process of it all you don't learn how to form your own identity just blend in and be and do what your family wants of you.
I think I might have a mild form of this. I get triggered by things and shake but don't lose consciousness, just feel like I had been hit by a truck. At school I was told I was lazy, but now I'm not sure.
It's likely caused by psychological stress, that will just cause me to straight pass out. I am prescribed Valium to keep my system calm. There's been an ad on US TV for anti smoking that has a voice box sound that triggers me hard. I'm wondering maybe I had this all my life. Yet flashing lights aren't a problem, or patterns. It's just sound.
I’m so nervous to be in public. I have resorted to driving my son around to do his errands and doing my things also. Driving is probably the one thing that I am so worried about losing. I can’t imagine this (whatever it is idk)could steal my life. Thank you so much for all your hard work 😊have a great school year ahead 🎉
I have PNES, thank you so much for this.
Well done for making this. I am a warrior
tyvm I am in the video and we r fed up of being told its in our mind
my name is carol
Definitely being sharing this with my neurologist.
I started having episodes over 10 years ago. Epilepsy/Seizure Disorder was a tough thing to hear at 25/26 years old with a 4 yr. old daughter at home. Of course, medications were trial and error the first 8-9 months and almost more hellish than the seizures themselves. I found a pretty good mix of meds to help keep things controlled- but I’m so tired every single day. I’ve had more & more breakthrough episodes the past 3 months and I’m terrified I’ll have a repeat of the past to the point I struggle to go anywhere I don’t just have to (I fell out in the grocery store alone, woke up to a police officer attempting to restrain me and severe pain in my back. I’d later find out I’d broken 3 vertebrae at the hospital.)
Thinking of and praying for each and every person who faces any type of “episodes”…No matter what the official name you’ve been given is, I know that things can feel bleak in an instant. Things may be more difficult - but my personal reasons for staying strong are my now 14 (*SOON TO BE* 15 year old in 3 days!!) daughter & my sweet 7 year old son. I’m a single Mom, and I know they understand my invisible illness & days spent in bed watching movies while I lay beside them and rest - But I’ll never get these years back.
You’re all amazing. Don’t forget that!❤️
Thank you so much for making this documentary 🙏 ❤ Thank you to the people that allowed themselves to be vulnerable in order to bring more attention to this. My sister and I have been suffering for years with NEAD and finally having the proper words to describe it and to teach other people, has been a step forward, in the right direction. @ 10:03 when she was talking about the first responders and their jerky comments, that truly hit home. 😤 To many times to count, when this has happened to my family, friends, and I. It's extremely insulting and discouraging 😞. Thank you to those that took the time to be more informed, in regards to NEAD. The more people become aware, the more helpful it can be. They seriously need to teach this in medical school and to all first responders that chooses to insult, belittle and not take the time to truly listen. My fellow people that is suffering, you are not alone, and you are not crazy! Thank you to those that care and be by our sides. I know it can be very scary and hurtful for those to see it happen, but Thank you 😊 🙏💜💜💜
My first dissociative collapse was when I was at school around age six during my parents divorce and my mom was on heavy drugs. I was throwing staples into the air and pretending to swollen them for entertainment of my peers and I worried I actually swallowed one and I went to the teacher to tell her I couldn’t find my staple and I think I may have actually swallowed it and I fainted with worry. The second time i was the same age I think I was playing with a girl outside and got suddenly worried the sun was too hot and i ran across the street to tell my mom and fainted in the doorway, as I yelled into the house that I felt sick. I have fainted several times in adulthood since then, but only during times when I start ruminating about how something bad is going to happen to me.
Wow so far the first one I watched he looked so calm. I completely freak out as it’s so scary. I’ve had them at work with the ambulance and another time had after effects for a week! I had another massive drama at work
It almost seems to be a different type of panic attack, which I have, but much scarier and way more dangerous...different responses to stress maybe?
That metalic taste, the feeling of familiarity like you've seen and heard this before... I don't know if it''s just an associative idea but I feel like the lighting in the room is trying to ''tell me'' something. Almost like I already have the answer I'm looking for, but only when I'm paralysed and cannot speak. Whenever I come back, it's gone.
That's metalic taste is very very common with epeilepsy. People have both epeilepsy and fnd so just be aware if you're testing wasn't thorough
I have been taking mine almost 11 years. I have multiple seizures everyday. They length of them varies and sometimes what happens in them. Like everyone here I start shaking, sometimes the shaking can get very fast. I can hear what everyone is saying, but can't reply. I also do have epilepsy which is controlled. I watched my mother pass and I was abused at a young age. I have done a lot of counselling. I was brought into an epilepsy specialist centre to rule everything else. N.E.A.D is misunderstood illness. I can't be on my own, it limits what I can do, like holidays, weddings etc. I get a feeling in my stomach and then I lie down and the shaking starts
I was diagnosed with psychogenic seizures I had them really bad 3 to 4 times a week I suffered with them quite alot weekly now Ive got older for some reason they have gone down a bit I still have jerks spasms not to the point that I calaspe I had no control over them I was still aware of what's going on around me could not respond had to ride it out on its own till I come out of it I'm so glad now that it's eased of
I've had suspected dissociative seizures since i was 14. I am having a EEG and a scan in two weeks time after ending up in A&E last February.
I've been having attacks (that I call shakes) for 4 years, I've seen doctors and never been able to put a name to my case. I've never met someone who has what I seem to. I feel so less alone. How do I take this to my doctor without sounding like I'm just self diagnosing and making it up? I've found so little understanding.
Exactly your there, but you don't feel like you're there, you don't feel anything you touch, you don't feel the ground beneath your feet, when you don't feel the ground beneath your feet that's when you drop and hit the ground, E.M.I.C EVOLUTION MENTAL ILLUSION CYCLE THE MENTAL ILLUSION OF THE EVOLUTION CYCLE WE ALL LIVE WITH. IT TOOK ME 9 YEARS 7 MONTHS AND 23 DAYS TO FIND OUT THAT I HAVE SEIZURES SPLIT PERSONALITY, the doctors still do not know what causes it.
I remember those ekg tests on my brain they said looks normal doctors said I can't figure little did they know we were experiencing childhood trauma we learned to deny reality and suppressed emotions because of memories that were too much for us at the time
Sometimes get this in bed. I suffered childhood abuse
very helpful information about nead that i have
I am sharing this video recently last month I have found out that I have this yet I was in there for a long time in the hospital and emergency room and they sent me home after they told me I had this I started having these seizures which they did not tell me what kind and to now when I was 13 years old so I was suffering for a long time it's hard for them and other people to diagnose this kind of seizure I was told I had two kinds a seizures but now I'm told that I have this one and having to take a lot of seizure meds and that I'm bipolar on top of it I need this passed around and help people that have this seizure that are trying to get help that the doctors do not believe them like me because I get them and they treat me like I am not having any of them thank you for listening
i think i just had a couple of these seizures last night. I felt like i was floating away, falling asleep, sinking underwater all at the same time. My partner was talking to me about something that i was finding stressful and their voice was just floating away from me and i couldnt understand anything they were saying. my eyes were blinking slowly as if dazed and i noticed i was staring into the distance. then my eyes closed and it was like I'd been hypnotised, in a way. my entire body went dystonic (tensed up) and i was physically actingg as if i was scared and anxious, but in my mind i was like "what is going on? why is my body out of my control right now?" and i was like that for a good few minutes until i came to. my memory was really foggy and i had about an hour of horrible OCD-like and delusional thoughts as well as a banging headache and feeling totally exhausted afterwards. it happened again a few minutes later but this time my eyes were sealed shut and i couldn't open them no matter how hard i tried. i started crying and it was a really horrible sound of terror and confusion but it didnt feel like it was coming from me. these things are real and scary. anyways I'm off to the doctor's 😂 thanks for this documentary.
Nervous system overloads. Panic attacks at the most acute level. Poor people.
🎯
I started having these 2 years ago when I was 45. I've had panic attacks for over 20 years, but the doctors just took my money and said nothing was wrong with me.
Thanks very much for video.I am 35 years old ,I am originally from Russia from march 2003 I live in IIreland with my parents brothers and sister.Since my childhood I have mild cerebral palsy ,left limbs are weak than right limbs, I have problem with my eyes and I had epilepsy.In 2009 in Ireland I had epilepsy monitoring .The the partial epilepsy sourse was detected .I was take tablets ,they help me, friquensy of seizhures and type power of seizhure changed I don't need injection and ambulance any more. .I have aura and can predict day of seizhures but seizhures was cantinue and doctores ask me to agree to make operation on brain.me and my family refused and asked to give a time to wait and look on changing of seizhure .
In 2017 year I had epilepsy monitoring again and everybody doctors me and my family were in shock..EEG didnt show any abnormality of Brainwork like showed in 2009 monitoring. Doctors had discussion and made conclusion: I have epileptic seizhures and nonepileptic seizhures together.Sane times they said :abcence of EEG during monitoring does not rule out epilepsy. I can have seizhure even when i relax and sleep, They increased dosage my medication . Type and friequensy of seizhures changed again.And we really confused what going on. If before increasing medication dosage I had 4 to 13 seizhures per month then after chsnging medication dosage i have 4 to 9 per month ,neither less thsn 4 and nor more than 9 seizhures but main thing is seizhure type is changed . Doctors say: that i have psychogenic seizhure but don't direct me to psychiatrist or psychologist. Theirs evidence that e have non epileptic attack that i have no EEG which looks like on epileptic seizhures and during seizhures my eyes simetime closed. I asked them question: Can epi leptic seizhures look like on non epileptic seizhures .Doctord kept silence .In irder to not provike seizhure , I try not tslk to people avoid amotions, but it hsppens any way.
I wish to all the people in the world to become a healthy does not matter what illness and desiase they have.. God bless everybody in the world.
The light of heaven to you too !
To the producers: I note from the credits you used images from the Wellcome Library (WL) and I am currently in the Wellcome Library researching matters pertaining to psychogenic non-epileptic seizures. I would be interested to learn what images from the WL were used in your excellent documentary.
I understand that the diagnosis of psychogenic non-epileptic seizures normally is made by a neurologist who then transfers the care of the individual to a psychiatrist. This is most unusual in medicine for usually a psychiatrist asks the questions in order to determine the patient's condition. I am intrigued as to what counselling is provided by a psychiatrist for a condition that is viewed as psychological in origin and where no medication is administered.
👏👏👏 Loved it!
The last year my eyelids have started fluttering/blinking rapidly for a few seconds and sometimes my eyes start rolling back. Happens a lot more when im falling asleep. I've also started getting random muscle jerks of my limbs. My gp says they might be seizures, im suppose to see a neurologist next week. I hope to fk that it's psychosomatic cause then atleast i can still drive and not take pills. Ill come back in a week and let ya know
Starts at my eyes to. Got FND.
What happened J V?
This is really interesting. After I had my first grand Mal seizure after not having any since age 4, I had a really long seizure. The person who witnessed the seizure was totally blind. My EEGs always read normally between seizures. So because I didn’t have a seizure in the hospital, they immediately diagnosed it at a non-epileptic seizure. My friend’s mom was a nurse and was furious. They weren’t psycogenic. Took my whole family witnessing them and describing them to a different neurologist. We , meaning my doctor and family and myself figured out I’d been having focal aware and unaware seizure since I was a child. But that grand Mal seizure, was the thing that helped them to figure it out. I’ve heard the same story from others who were diagnosed as having PNES, who were actually having epileptic seizures. Thing about my events was, they were like 90 seconds and the my friend’s mom was a friggin psych nurse. She’d seen those before so she knew the difference. It took like 4 years to make the correct diagnosis. They haven’t been able to control them completely so far. But Lamictal makes them less frequent so that good. I’m saying this because it seems like if they can’t find anything in tests cause epilepsy can be really random. For instance, I might go 4-6 months iwithout have a grand Mal seizures, and then have like 3 or 4 in one week
The neurologist that had me admitted in the hospital was kinda disrespectful about it all, like had nothing to do with my time but start convulsions randomly and act really weird afterwards. It very much felt like he thought I was faking it. I’m kinda wondering how over diagnosed it is because of normal testing results.
Aw hell yea
I had to diagnose it myself and then tell neuro because they had no idea
I found it's related to my hyperactivity though, ADHD medicine controls it, but can't avoid them always
If I move something all the time though, they generally don't appear..but it's hard to rest then :D
It's misleading to say disassociative and derealisation are caused by PNES. These symptoms are also caused by Temporal lobe seizures that are associated with epilepsy as well. This title makes it sound as though these things are just psychiatric issues, which is a HUGE proboem people with seizures already face everywhere they go without a whole documentary being dedicated to insisting that this symptom should be automatocally assumed as a mental illness. You can have epilepsy and still not have a diagnosis if your episodes are happening far apart enough that none of them are caught on an EEG - AND some seizure activity can't be seen on an EEG anyway if it's happening deep in the brain (not right at the surface). And btw regarding the intro, eyes rolling back into the head is one of the ways to help tell a doctor that it is an electrical seizure and not PNES.
🙄🙄🙄
I too have gad seizure tests done and unable to get one to trigger. So new neurologist said it wasn't that. But when I had another seizure and told er neurologist my symptoms she said it's focal seizures. I don't sake or twice. I get very weak and limp, dissociated thinking. Mean as my wife says it looks like staring at someone with dementia. I look right through you. No knowledge of who's who, or where I am. Can't clearly speak. Words are jumbled
Absolutely brilliant vid but I must warn any headphone wearers regarding the ridiculously loud music!
I had the volume going up or down - depending on whether it was the loud music or the quieter dialogue.
My husband says I basically go stiff and fall head 1sy wherever I am. Like I lock up and convulse. I often stop breathing at all. Turn gray. No breathing at all and locked into a stone like way. They happen back to back 3 to 5 at a time with no consciousness in between. Hospital each time. What's wrong with me?? Stress or no sleep seems to be the reason. Help!!