I've had PNES since 2009 and also have a dissociative convulsion disorder as well. My disorders stem from severe PTSD due to trauma and other factors. PNES is very REAL, and it's an aggravating process to be diagnosed within the medical world for sure. Thankyou for reading up on it, so many people just shut the idea down that PNES is a fake illness.
I have pens it started when I was 4 i was having 54 a day they put me on different Medications which did not work and I had reactions to some clothes my throat shot others caused reactions of the skin they ended up putting a vagal nerve stimulator in in 2000 I went for years without having seizures and found out this year at 26 that I have pens still undergoing treatment I completely understand the Anxiety that the non-epileptiform pnes Seizures cause
I never did pass out but I had my first episode last year when I was 46. My muscles did not tighten up or anything like that but I could not control what my arms and legs were doing. I would try to move them but they would not do what I wanted them to do. Tried talking to my wife but all that would come out was grumbling. I had a slight headache for literally about a month prior to the seizures. Had 2 episode in one day. Went to emergency room twice, I don't think they were understanding what was going on. Went to a neurologist that really had no explanation and told me it was just one of those things. Put me on a seizure medication and away I went. Lost my job over it. I was completely aware when these episodes happened and remember them like they happened yesterday. I haven't had any problems for close to a year now but I'm still on the medication. I think we all deserve a real medically scientific answer to what is happening to us.
Thank you for this video and the insight. As someone who is a caregiver to someone who has PNES (we believe - we know he has seizures and he is not epileptic), who is also my best friend and like another brother to me, I want to state how ANGRY I am at the lack of knowledge and education there is on this subject! And this includes doctors - their lack of understanding and compassion is appalling! I'm tired of seeing him completely fine and then out of no-where dropout - sometimes literally - sometimes he convulses, sometimes he doesn't, sometimes he turns grey - It as awful and you feel helpless! There is something more to it that has not been discovered by medical science! Makes you feel like we're back in the 1800's! Please keep up your work and doing what you can to bring awareness to the world about this perplexing disorder - God bless!
Thank you for this video, this is exactly what I deal with. My neurologist diagnosed me with this and basically said there’s nothing he could do and he said he would give me clearance to drive. Not even considering that I have intense fear of driving. I have had several seizures at work I usually try to go to the bathroom and lock the door and lay on my side. I been Out of work for 3 weeks, but i just got another job working with dogs. They keep me happy and it has reduced my stress. The fact that you said that when you feel overstimulated by the environment and how you have a seizure when everything is calm it never happens right then and there... You saying these things just helps me feel like I’m not crazy and that this is a real thing that a lot of people deal with and just as you said it’s just that the medical books have yet to understand it. Please keep making these videos they are very much appreciated.
In the process of getting diagnosed with SOMETHING by a neurologist, which I highly suspect is PNES. I've also been out of work and university with mental and physical health problems, in the process of applying for disability, and been working in the ways that I can to make a better life for myself and build my self worth and self esteem after being out of things for so long. TH-cam is becoming a part of that for me, as well. I cried a bit watching this video, and hope to contribute to others in a positive way similar to this. Thank you for sharing your experience, especially with the intention of supporting others.
Hi, I have non epileptic seizures. I just wanted to thank you for sharing your story. I was in a car accident in August which left me with a traumatic brain injury with seizures. The doctors don't know and they will try to give you anything. But doing research helped me out and being in the medical field. To everyone you all are on my prayers. Take care and Merry Christmas.
This is What helped me!!!!! (Not that it will work for all but worth a try). Reading through the replies I noticed that most of us have almost exact symptoms, doctor run-arounds, tests, experiences, etc. I just wanted to say that my PNES has not been active in 2 years now, and I credit a very good therapist who did EMDR therapy with me. Like most of you, I have been through hell and back, but just wanted to share what actually worked to keep mine away for so long now. Love to you all!
I've had this since 2006, I'm 30 now. I can't work anymore and I live with my parents. I also have a severe spinal cord injury that has left me unable to walk for more than 5 minutes a day or my legs paralyze. My parents find me on the floor shaking, with a blank stare, and they're not healthy enough to pick me up. I'm unable to recall much of the events. I usually feel extreme terror before it occurs, go to find my parents and just collapse and my memory goes. It began after my first dad died, and he was my world.
I was diagnosed with this illness sometime last year. I have been fighting for disability since 2014. After 3 incapable law firms, 4-5 appeals, 3-4 times denied, my case got closed then re-opened, incompetence from a few judges, and it hurts me when people in my family and other people i explain this too think because i have two arms and two legs that i can work and the ignorance pisses me off. You mentioned how you feel seizures coming on before they happen and that’s called auras (warnings). I get them each time and the recovery is like a vampire draining you. I also get absence seizures and clonic seizures. I choose not to renew my drivers license because i don’t want to take a loved one from someones family because of me committing a selfish act. I live in NYC so transportation is everywhere. Plus, it’s cheaper, faster and no ticket paranoia. Keep fighting and don’t give up on social security. If your parents are very supportive like mine are then girl you got this. Fight, survive and overcome to live. You go girl.
My 13 yr old had her first PNES on X Mas in front of everyone. We got the diagnosis yesterday. Thank yoy for the info so i can better understand what shes feeling.
Thank you so much for making this video. I was diagnosed with PNES back when it was called pseudoseizures and I wish I had an outlet like this then. I have been through everything you have and all I can say is keep going. Every day is a new day.
Great job....I look forward to hearing more from you. Its sad when your diagnosed with something that the medical community doesnt understand and they label it as something that isnt real....but you know its real...they just dont have the knowledge to deal with it and they cant admit they are stumped. Makes you wonder how many things they do treat, that they really know how do deal with. Im glad youve come so far and become strong and want to help others. Exciting to know your going to create here. Almost always, when we think we are hitting a wall, its actually us waking up to a calling, that shows us what we are suppose to share with others....Honestly I think with something like what your dealing with, is an issue that happens reguardless of what your going through but people who have seizures etc are effected more by stress, good or bad. Peoples bodies handle pressure and repair differently. Through all your experiencing you will connect the dots and be able to counsel others in a way that makes them feel much better, when having to go through medical issues and so many slaps in the face from a place that should be building them up. The more that people can come together on these type of things the better and quicker there are things we can do to change the misconceptions and find real help.
Thank you for your testimony. I was diagnosed about 6 months ago after a year of testing and misdiagnosis of epilepsy. This condition can be a hard pill to swallow. I recently found a great psychologist. My hope is that we can inform the public and get rid of the stigma behind pnes.
You're an amazing person and I'm not just saying that. I have a sister like you who is amazing. When you talked about psuedo seizures and how it's wrongfully perceived, I must confess I too remember when I thought the same and it now breaks my heart. When I see my sister and as I see you, I see a warrior who needs not to worry about self fulfillment because you are so much more than you, me or any one on earth can imagine. I love you and God Bless.
Thanks so much for sharing your story. My 17yr old was just diagnosed with PNES last week. She had her first episode on March 5, 2019. Her job called me and said that she had passed out and was having a seizure. It wasn't good. She had 70 in 4 days. Today was her first day back to school and she had some more. Im so stressed. We are all just trying to understand all of this. Your story helped shine some light. Thanks again.
Its has been a little over a year now since my tremors episodes started. And all the doc I have seen still don't know what is going on with me. Its frustrating at the same time discouraging to have your life altered and not know or understand why. Plus it don't help to feel like no one around understand or docs are giving up because they don't know or think your faking. But your video has helped a lot. I am experiencing a lot of the same things you are, thanks for the video.
I am having the worst time. I have been diagnosed with PNES and I am in the appeals process myself. I feel so depressed and awful. And no one seems to know anything. Thank you for making this video. It was so nice to hear someone actually talk about it. My name is Jessica and if you ever want to message, please do. I am stuck in middle of nowhere, cant drive and I honestly don't have any friends. Im 37 and lonely and confused and scared. So thank you for your comfort. It means more than you know.
Each of you keep the faith. Continue to not only love God but yourself. Pnes is extremely difficult to deal with. Make sure that you continue to keep a good support group around you. Learn to laugh at your own self as people tell you things that you have either done or said during you're episodes. We are all going to get through this. I am so proud of the young lady who produced this video. Please pursue your passion to serve. I wish I would have thought of something like this. Old people and electronics, not a good, idea, stressful. Of course I can only speak for myself. I do good to remember to put my wig on, LOL!😄 Peace 💖
You are so brave and an inspiration to me . Thank you for the video.. Get a good lawyer for your SS .I know you will get it . Keep the faith and take your videos with you to court Have the judge watch them too And fight for your disability..
I applaud you for speaking out. It's so frustrating to suffer from PNES or any seizure disorder for that matter. Some people believe and support you while others think you are 'faking it.' In 2015 I was diagnosed as having the PNES in addition to my epilepsy that I was diagnosed with at 6 months old. Since age 12 my seizures became uncontrolled and I am unaware of when the actual PNES set in but I have my suspicions it was at the same time. My childhood trauma stopped, my epilepsy treatment stopped and my fibromyalgia pain and various seizure types set in all around 12 years old. My epilepsy is now considered refractory or drug resistant and the PNES is a constant as well. I've struggled for the last couple of years trying to fit my seizures into that threshold that they define into PNES episodes that doctors claim to relate to my childhood trauma but it doesn't seem to fit. My episodes don't occur during any recognizable triggers. And so my question stands when a seizure occurs 'are they epileptic or not?' I've asked doctors about how to differentiate between the two and they really can't tell me a straight answer, except that I'm a complicated case since I have both and have multiple seizure types. I've looked at my medical records based on the video EEG and the two episodes based to diagnose my PNES on were episodes that I recall having my fibromyalgia pain. Recently I started questioning the doctors again and they confirmed what I had suspected. My fibromyalgia brain fog could be considered a type of non-epileptic seizure. My primary thinks my fibromyalgia may be somewhat related to the childhood trauma; therefore, episodes where I get the brain fog could be considered PNES since they mimic seizure activity, though generally not my tonic-clonic/grand-mal seizures. Those have been confirmed as epileptic activity. I was once told by one doctor even before my PNES diagnosis that I was going to have to search for my own cure and what worked for me since nothing they tried seemed to be working. I truly agree with that doctor on that. She knew my history and had been on the journey with me to treat my conditions since I was 19 years old. Unfortunately she is gone but with my new info gained I am powered for the search. For me it is basically a connect the dots journey. My main struggle is trying to figure out which seizure is epileptic and which is PNES when I can't figure out a trigger and I am not having an increase of pain due to my fibromyalgia. If my doctors can't figure it out without an EEG to my head, how can I especially since stress can bring on epileptic seizures as well. It's basically a complex journey that I will probably be going through the rest of my life. Basically taking one step at a time. I'm glad you are appealing the decision. My judge felt as he said I 'just had anxiety over my epilepsy' and the appeals council refused to look at my paperwork. With any seizure disorder we aren't faking it but many just don't understand. I basically depend on my parents who live off their social security since they are seniors. I don't know what I'll do in the future since my seizures are frequent enough I can't work and my mom is basically at my side all the time but I'll try to keep searching for that answer and that cure. All our stories are different but we share a common bond. Take care.
Julie Otto Good luck. Thankfully my disability did eventually get approved since this video. Yeah I haven't found a treatment that works. Maybe one day they will figure all this out. ❤❤
My mother is 52 years old and has been having seizures since she was 8 years old. She is currently on a combo of 3 different seizure meds, the ER staff and EMS know her by first name... By making this video you've just answered many questions for me and have helped me navigate advocating for her. She has a history of abuse and mental illness. This makes so much sense. Thank you!
I been having this problem when I was 17 years old. It was very scary for me i use to have them at school all the time. Im 21 years old taking keppera abd prozac. I still have PNES through the month but im also going on disability and I'm waiting for my appeal as well. Thank you for sharing your story i definitely can relate. I been going through this since 2014
Good morning beautiful people 😊❤️ I just found out that I have PNES seizure , I fist got sick on May 06, 2017.... And been seeing a neurologist-I'm 52 yrs old. I want to thank sara I watch your video and a few more, trying to understand what my condition is...... I do have an appt with my neurologist Doctor this tues .... Staying positive....Praying 🙏🏼 take care 💜 Blessings ✌🏻️❤️😊🎼👏👼🏻🇺🇸⚓️🕊 Teresa
I was just reading through some of the statements/stories on this site. And yours caught my eye, I'm in agreement with you in prayer that your healing will manifest in Jesus name and you'll be free and whole. Remember to put your armor on each and every day. God is always there with you. Peace💖
My almost 16 year old daughter has only just recently been told she is sufferning from this. Her first "event" was while she was away on a Girl Guide camp over 6 hours away from our home. We are in Australia and this is something I had never heard of so came across your video while Googling. Thank you, you have helped me to understand a little more about what to expect as we begin this journey.
I really know nothing about PNES but because of your video at least I am aware. I live with severe RA and of course with one auto immune disease there is usually a cluster of others. I'm always interested to read about how others fight their own wars with disabilities. I know how hard it is to continually modify your life to cope. Your idea to learn about video equipment and share your progress, thoughts, feelings and info for others is such a positive step. I congratulate you on your positive outlook {I know how hard it is sometimes!} and hope you keep taking steps forward to learn, grow and bloom! A few things that have worked for me: eat as close to the dirt as you can. Don't stop moving and love yourself! Wish you all the best! Stay on your good path.
My husband was electrocuted 1 month ago. Had his 1st ambulance ride and developed seizures. It's been a hard month with some drs taking this seriously and some who think hes faking for attention. His seizures are totally real. Loss of consciousness body convulsions the whole bit. It wasn't until a dr actually saw with his own eyes my husbands seizure did they get him x-ferd to directly to cardi and neuro. (Had irregular heart palpitations aswell) they had him on a 36hr continuous eeg with cameras. While connected he had 2 seizures, the eeg didnt catch it only the cameras did. I have learned so much about PNES in the last 3 days since his diagnosis. Your encounter with PNES felt and is as real to me as I have witnessed for my husbands' seizures. We have a difficult road ahead of us. The irony in all of this, is that he is a direct care provider for disabled adults. Now, he is the one needing more care. All I can do is support, love him and try to figure where to go next in our journey.
I recently developed this condition and it’s so unknown that it’s difficult for people to understand much less treat. I appreciate you sharing what it’s like for the world.
How brave you are! I have also been struggling with pnes and severe ptsd for about four years now. It is so good to hear from someone else who goes through the same struggles. I am blessed with two amazing teenage daughters and the most supportive husband. Without them I would be lost. Friends and family who understand or at least try to understand are so vital to our every day. I wish you many good days and eagerly wait for more videos from you.
I was just diagnosed with PNES, it all started 3 months ago out of nowhere and it has really taken a toll on me. I still work thou I've had 3 attacks now at work, my license has been taken away and I feel like I lose a piece of me with every attack. I'm really trying to keep myself together but it's been really hard. I had my first attack in my sleep 2 nights ago. It was so intense that I definitely hope I don't experience another. I'm afraid everyday. This has taken over my life.
I'm so sorry you have had to go through this. It is so rough. I know for a while I was having them every day. Focus on your mental health and try to start fresh each day. People have a hard time understanding how hard it really is. I'll be praying for you.
One thing we can all do is pray for one another and come into agreement with one another for our healing. I have worked with a chiropractor for years. And he has been able to help mine with the lifting up of my brain stem from my head. It's very slight but it takes me out of an episode. I understand different things work for different people. Continue to smile and know that this is going to be alright. Have the God kind of faith! Peace💖
Thank you for sharing your experience. I was diagnosed with PNES a few months ago after many years of frequent episodes. I cannot work, and I would like to be on disability but people around me keep saying “oh surely there’s SOMETHING you can do.” 😔 I have CPTSD and experienced a TBI in my late teens...I’ve been told I need therapy but I’m struggling to find the resources for it. Lately I’ve been having a lot of episodes when waking up from bad dreams, but sometimes they’re just out of the blue when I’m feeling ok. I wish there were more obvious triggers....sometimes I get a crawling sensation on my scalp, but not always. Anyway, I’m a new subscriber and hope to hear more about your experience. Thanks again. 🦋
I am basically a mirror of all you talk about. This has been a 2 year journey for me and it started when covid hit also just a few months after I had a tumor removed from my brain! Of course people around me in my family worked and those got Covid so eventually so did I. We had a struggle to understand if this was Long Covid or something related to my brain tumor. It took about 4 times passing out cold abd many other seizures then the 4 days miserable hospital stay gorgeous them to say you gave pseudoseizures... then I was packed up and shipped home. It was extremely difficult for me to find good help and I am also now in my 2nd year and appeal process for disability. I am beginning a cognitive behavior therapy with the epilepsy team specializing in non epileptic seizures at UCLA! The Dr mentioned in the article I found your video I'm is head on the department. I was so happy to see your story. It helped me see that im not alone. Thank you for your bravery in telling your story and bringing awareness to this little understood disease. You have a sister out here who feels your pain. Often 2-3x's daily! We should compare kites and share experiences and advice!
Hi, I'm 54 and have been dealing with PNES for 3 years now. I have been on disability for 2 years. I have found there is an entire community of people that have this same problem. Most Doctors know very little about out problem and show little interest in learning anything about it. I don't know about anyone else but I feel I am being sent to these older Doctors just to placate me. I feel your frustration.
Thank you for sharing your story. It’s so frustrating and it feels good to hear I’m not alone. I just hope to get to the point where I can drive again😔Stay strong! Share an update if you feel comfortable. God bless
I have seizures, I went to a neurologist and she did an egg, it didn't pick up anything, but I didn't have a seizure during it. The neurologist basically told me that my seizures are from my anxiety and said she couldn't do anything for me and sent me home. I have complex PTSD and a lot of mental health issues. I go through a lot of stress at home with my mom. Stress brings them on. I need to get an egg where I stay, because I had the half hour one done before and didn't have a seizure during it. One of my online friends has PNES, so I think that's what I have. My counselor diagnosed me with them, but my parents don't think my counselor can diagnose me with something, even my PTSD. My seizures have Been getting worse overtime, I get them in stores and restaurants. I am going to be 18 this month and my dad is trying to pressure me into driving. I know I can't drive with my seizures, but my parents don't think they are seizures because they ruled out Epilepsy. In the future when I move out I really want to get a service dog, I have 7 different disabilities that qualify for a service dog, and having a service dog will make daily life easier for me. There is this online course that I want to take after I graduate in May, and the job I will have after that course will be remote.
Hey, ive been recently diagnosed in 2018 for the exact same thing. Not a lot of people understand this. I am so happy I have found more people going through the same thing. Been hoping to find a support group. I would love to talk to other people going through this.
Thank you for sharing your experience with FND and these types of seizures associated with that. I was diagnosed this March by my Neurologist who also manages my Hemiplegic migraines. I wonder how many others out there with this disorder have had CPR done due to them stopping breathing. I've had that preformed 4 times and it is still being investigated as to why I had hypoxic episodes. Did you ever hear about the disability you appealed for? Mine is still on the maybe pile with the appeal tribunal.
I just had my first set of psuedo seizures today that lasted all day and it's very difficult to deal with because I can be laughing and talking one min and then be having a seizure the next. I can tell when its fixing to happen because of the way my body feels. I'm glad you made this video. I subscribed to your channel and hope to hear more about your journey
Very well spoken!! I wish you the best of luck and it is great to see you helping others. Good luck with your new editing software. You will be fantastic!!
I am a private singing teacher and one of my students has this condition. Singing has really helped her in many areas. I believe in music therapy. Maybe you should try that.,
I just finally got on disability, and I just got diagnosed with PNES after I got disability. I hope you get disability soon. Its not an easy fight, just don't give up.
Thank you for putting this information out there. You are so sweet and personable.... a natural on camera. My 45 year old daughter has been diagnosed with this, and continues to have a very difficult time accepting it. As her family, we thought she faked these episodes as a form of attention and manipulation, but I've come to learn more about it. Such a difficult disorder to treat. Hugs hon, and much luck in your TH-cam endeavor.
These are not fake, they are brought on by trauma (from the past). I have this too, plus PTSD. Your reaction to her medical problems leads me to believe that you yourself may be suffering from a personality disorder such as narcissistic personality disorder. You can get therapy and treatment for it, and you would want to do it to cause less trauma to others and heal your relationships. There is also one called Antisocial Personality Disorder. Maybe you have trauma in your past that made you act narcissistically towards sick people with neurological disorders. You can work through your trauma issues in your own therapy so you don't end up taking out your frustration on disabled people with seizures. Do not make the person with seizures the family scapegoat. They have enough problems to deal with already, what with being in pain a lot and having seizures.
Good job , i recognize so much you say. Got emo and all. I have just read about this new science study. It basicaly says people with pnes and ptsd are missing some dna that make them more stressfull.
Hey, and thanks for sharing about your PNES. Even though I have been suffering from the same epileptic seizures since 2006 I control my seizure attacks because before getting those attacks I get signs or images which is the first step toward our PNES attacks. The second is our heartbeat, which must be calmed down by soft breathing. Hence, I find a place where my in a conscious state for the next few seconds and then start breathing and cool my mind. after few seconds when your heart believes in me that everything is alright, automatically the attack comes down. Till date, I do have these attacks but only in my dreams. if i have them some where in my conscious state i control them
Its not great you have these too but its nice to know your not alone ..ive suffered with these years over 21 yrs n the stress it adds to you just worrying about having another .really doesn't help!!..ide had mini stroke too in beginning as scans said as bleed in brain too....recovered from all this c#@p but still worries you all the same especially the young....much love n debbi vasileiou...stay chilled.!!
Thank you for this video. I have going this as well and asthma attacks. I truly understand how u feel and ur experience because I'm going through it as well. Keep up the good work on getting information out there because like u said, a lot Dr don't know how to treat this condition. Some Dr can only do so much and therefore they recommend different psychology, psychologist just to name of few. Knowing ur trigger is a huge thing to try to treat this condition. It might not go away as I'm learning but will maybe make it more barely able. . I glad people are starting to acknowledge PNES and realized it isn't fake.
Hey I have also got asthma and probably PNES (waiting for money to get a diagnosis). Also PTSD. Anyway it's good to see another person who has asthma and PNES like me. We are awesome and beautiful and strong people. I joined a choir to help me breathe better, have you tried that? :) It really helped my asthma, slowly working up to holding those long notes. :)
I have these & my neurologist told me to tell any medical personnel that I'm have PNES seizures & that they are indeed real just an unknown cause for them. At least I've got her on my side.
My 21 year old grandson has just been diagnosed with this. He has been on 2 epilepsy meds and only getting worse. My daughter does have epilepsy. But after so many trips by ambulance to ER.And a 3 day brain wave test it was not epilepsy but Pnes.it is a horrible thing to describe.
Good to hear from you with pnes I have got the exact same diagnosis and symptoms. Not allowed to work and had collapsed at work and ended up in hospital er. often pnes is accompanied by clustor B personality disorder It is not uncommon for a diagnosis for Borderline personality disorder as a commodity. I will be seeing a doctor next week
I agree with everything you're saying. I was diagnosed with the same thing. I started having them so bad I was being rushed to the hospital from work. My job told me I couldn't come back to work unless my doctor releases me. I have wrecked my car twice and I'm not allowed to drive or work. This taking over my life as well. The neurologist saying it's not medicine needed for this. What we are experiencing is real an not fake at all. I have them every day like 5 or 6 times in one day. It's scary and the doctors don't want to talk about this illness its a hushed thing with them. This affecting my life I can't work nor drive.
Hi! I’m glad I came across your video. I am diagnosed with Epilepsy. I’ve gone through all the testing and the same type of story as yours basically. No answers in my tests either! Like, there is nothing showing in any of my tests. Your video gives me a few more questions to ask for my upcoming appointment in March. I have also applied for disability and have gone through the process quite a few times. This will be year 3 or so for me and I am in the Hearing stage with Allsup right now. No clue if they will deny me again. :( chin up! ❤️
It's wonderful when at least you can have a name attached to something physical. I see your post has been up here for a few months. I hope this message finds you doing much better. Peace💖
So glad I'm not the only one. As a teen just trying to ges school while being blind, (I go to a school for the blind) and having PTSD, PNES just made me feel like I'd failed in life. But now I don't mind so much. I mean, I do, but now I know it's not just me.
I had a neurologist tell me for 2 years I was having PNES. I Finally sought a second opinion with an epilepsy clinic. They said like me a lot of epileptic seizures don't ever show up on EEG. That's not a basis to diagnose PNES. I recommend anyone diagnosed with PNES get a second opinion with an epilepsy clinic. Have someone film a seizure. My new neurologist put me on two seizure meds and I haven't had a grand mal seizure in a year. There is nothing to be ashamed of if you suffer from PNES. It is a medical condition. But if you actually have epilepsy and the seizures can possibly be controlled it is worth the second opinion.
My 13 yr old boy hs this. Right now I am battling with the school to put him on an IEP instead of keeping him on the 504 plan that we put in plce last year. The problem is that the school psychologist, the person who will be evaluating him for the IEP, dtetermined last year that my son was refusing school. She called his PNES episodes "a refusal". Like he concously refuses to be schooled and so he v=basically fakes his PNES episodes. I cannot even begin to describe how this makes me feel. After all that we have been through in dealing with his pnes, we have people accusing him of faking. It makes me so angry I want to explode !
Paul Arnold I suggest getting a neurologist to write a letter on behave of your son. As a former dyslexia teacher (thanks to my own PNES), I know schools can be such a mess as far a technical things like IEPs go. It will greatly help your case to have a doctor backing you up. Don’t trust that the school will do the right thing so to speak. They are basically working from a government checklist and not their own minds or hearts. Your job is to educate them, not hope they’ll educate themselves. If all else fails, work with your son on how to cope. If PNES causes bullying or insecurity, teach him to find a strong self-worth and set goals that extend beyond his current situation/school. If PNES causes him to miss out on classes or even a few words in a lecture, have him make friends with someone in the class that takes good notes or can be a study buddy. Also, setting meetings with his teachers to personally discuss his condition can do wonders even without an IEP. I hope this helps.
i also have PNES and im 16yrs old. what hurts me the most is that nobody cares anymore. my mom doesnt believe that i have this ongoing condition, my dad just watches me have a seizure and wont even help me. worse still when I'm at school, i get different comments from people.. sometimes i feel it coming on, like my heart races, i get confused, i feel my muscles getting weak.. so i go to the nurse's office, but sometimes i dont make it bc its so far and i end up having a seizure while people are staring at me. it just makes me lose hope in myself. no one supports me and its devastating. i tend to withdraw myself from people and large crowds during school or anywhere because im so scared of what could happen.. its so hard to move on and carry on with life
That sounds terrible. I hope you can get some help. Try and learn your triggers and have a few close friends that know what to do. Easier said then done I know. ❤
I just got told I have NES last week. first it was pass outs they told me it was pots then I got a pacemaker. then this. I have a lot a day yesterday was bad had 8. thank you for sharing your experience.
Melissa Jung I'm glad you liked it. I had a bad night too with a cluster of them before bed. We have to keep fighting though and try not to let it run our lives.
phone7x7 : Is your dog a SERVICE dog ? Does she or he let you know AHEAD of time when you are about to go into seizure mode ? I'm glad that my brain WARNS me that I'm about to get hit. Then as quickly as possible I'll head for the bed and ask for assistance from the nursing home staff here. I am SO SUPER GRATEFUL that you and other members of the You Tube family are now sharing your expierences, in regards to this disease. This disease and my diagnosis of C.O.P.D. ( A very, very, serious IRIVERSABLE lung disease ) have COMPLETELY DEMORALIZED ME ! I sincerely thought that I was LOOSING my sanity. But thanks to nice people like you, I have regained some of my confidence back. Do you know what it feels like, when one feels that they are TOTALLY USELESS to them selves, family and Society at large. If it weren't for a "FEW" VERY DEAR CLOSE "TRUE" FRIENDS giving this 65 yr. old emotional SUPPORT, I fear to think, of what I might have done to my self. But due to them and even the GOOD COMPASSIONATE strangers like yourself, I WILL continue to march on. W?e ?out here in You Tube land will be looking forward to more postings, that you and others will publish here, in regards to this terrible heart breaking disease. Bye, And Many Blessings to you and all who contribute ! 👍😇😇
I have just been diagnosed with this😔 I have been having seizures for over a year and a half. I am very depressed over this. I am trying to get help now. I was already in process of applying for my disability. I am going through this with Morgan and Morgan attorneys. Thank you for your video. I am struggling with this... I feel ashamed of myself and useless. I am currently fighting suicidal thoughts. I have been victims of DV, rape and a severe car accident with skull fractures and a subdurmal hematoma in 1998. I suffer with severe panic attacks and headaches daily. I am trying to wrap my head around it.
I'm sorry you are going through all that. If you need to talk you can DM me. Also find support groups. I am part of a few on facebook. It really helps to find people that are dealing with the same thing as you. Also check out my video about what to do while waiting for disability.
Try slow movement based healing things like gentle yoga and chi gong. You can still do the yoga poses in between the muscle spasms, you just give your body time to jerk around in between and then go to the next pose. I'm just looking into Feldenkranz too...IDK about that yet. I also recommend seeing a gentle chiropractor who uses an Activator and knows about skull trauma because apparently the skull bones do still articulate and can be shifted out of place and give you a splitting headache if your abuser has enjoyed bashing you in the head with his or her fists. But the chiropractor can put your skull bones back in their proper spots and your head will feel so much better. :) Craniosacral therapy is great too and Altra Zero Drop Footwear (sneakers) so you don't cause back/spine/neck/head pain by wearing heels in your sneakers or shoes. The toe and heel are the same height in these shoes plus they have cushioning and great arch support. I get the trail runners because I like hiking in mud LOL yay nature. Going into nature reduces seizures. I have memory foam insoles for extra cushion so I do not get foot seizures. My ball of foot pain from walking has been eliminated thanks to these shoes. I have a Gregory Women specific backpack with a waist belt to take care of my back and nerves to carry weight and have less seizures and less back pain. When I use a general backpack or one designed for a man or carry something on just one shoulder, then I get more stress on my body and more seizures. I must evenly distribute the weight of what I carry onto my hips and the small internal frame of the daypack also helps me stand up straight and not walk like a hunchback like I would normally do because of my habits and my back problems and all my neurological damage especially in my pelvis. Osprey also has some great packs. You can find them at an REI Sporting Goods/Camping Store and get them to measure your torso so you have a pack that perfectly fits your own body and works with the biomechanics of your body. I have a 16 inch long torso and a 16 inch long pack that fits all the curves of my body and distributes the weight well when all the straps are snapped shut (waist belt and chest strap) and the lift loaders are properly adjusted. I found out I really need lift loaders because they reduce pain a lot and seizures too. Do not get a soft pack. You need one with a metal or plastic frame inside to help you stand up straight and distribute the weight. They make small frame packs like 30 liters is about right for getting around town on a bus or on foot. Do not drive, you probably will get more seizures from it; I did and I could have had a car accident. It is not save to drive with PNES. There are plenty of other ways to get around: bus, train, on foot, ferry, canoe, plane, hovercraft? LOL kidding. I have never been in a hovercraft but I have been in a submarine and I want to go parasailing. Maybe after I get better once Harvard accepts me and heals me and I get my Harvard PhD in Environmental Sociology or Environmental Sciences. At least being in grad school currently studying the environment has given me some sense of purpose while I wait for Medicaid and try to plan my future. I can study and go to class around the seizures and extra sleep I need. People get a bit annoyed if I have a seizure in class but I just tell them I am disabled and they need to just not look at me. I then advocate for myself and tell people not to shout in my face because that will cause a panic attack and the panic attack will cause seizures. I have been shouted at by a couple of guys in my face in my classes and experienced that but I talked to the professor and dean to remind guys not to do this in class, especially not to me. I also collaborate with the Office of Disability Services to get accommodations like longer testing times and student housing accommodations. I go to a state college (Texas State University), I think its pretty easy to get into these and they will let you in even if you are disabled and or homeless and or a human trafficking survivor, like I was when I applied. Just tell them about your disabilities and see if they seem to think you are still a good candidate for the school and your program of study. I tried Arkansas State University but it did not work out because everyone treated me badly so I had to go away and come here to Texas later on. Please completely avoid University of Idaho and University of Wisconsin. Both are very bad with regards to Title 9 and disability help. They do not care if you are raped on campus or if you were raped in the past and were trying to heal. They will scream in your face a lot of you are crying and will not stop. They'd rather accuse you of being drunk in class than acknowledging you have a psychological problem for crying and having seizures. Their counselors on campus suck and are self absorbed. I have never cried in any of my classes in Texas state, and I have only been screamed at by fellow students that gave me seizures and not screamed at by professors (but in Idaho professors will scream in your face, when you are already crying, thereby causing you a lot of seizures in addition to tears, so if you have PNES stay far, far away from Idaho...its also where I was trafficked as a child, so there are just a lot of abusive child molesters and KKK members living there. I'm so glad I escaped Idaho. Yay. :) To celebrate graduating Harvard, I will take my friends in a hovercraft and go parasailing. Once Harvard heals me of my seizures. I tried sailing but that gave me extra pain and spasms/seizures. Because hoisting the sails is really hard on your abs. I cannot do horseback riding or any type of rock climbing with harnesses because this can lead to seizures and a severe painful vulvodynia flare up. If I can cure this PNES and vulvodynia, which I would love to do, I will ride horses and then abseil down a waterfall after rock climbing and then go cave diving (where you wear a rock climbing harness and then dive into caves with water in them and swim around, but you have to be seizure free for 4 years before the SCUBA associations will allow you to become certified. This is frustrating. I want nature adventures now, while I am young. At least I can walk around in nature slowly and then lie down in nature to chill and be happy if I get seizures. But there is so much more I want to be able to do and experience. I try to find chiropractors here: doc.activator.com They're the gentlest ones. Chiropractic treatment does cause me to have some seizures on the table but as long as the doctor waits until my body is finished spasming to make the next adjustment and lets me lie there as long as I need to when they are finished before I have to get up and then lets me use the nice massage table when I am done, I get a reduction in pain from a really sore back and more seizures to reduce to no back pain and a lot less overall seizures for the weeks ahead. My chiropractor recommends I be seen twice a month.
My infant daughter had this and the neurologists said there was nothing that could be done, as her "seizures" were not actually seizures. But she was having over 100 a day. I got frustrated with the medical world and scheduled 2 back-to-back appointments for her.... First with a very qualified craniosacral therapist and then straight to a chiropractor. Her "seizures" reduced that same day, almost completely gone. After one or two more treatments, they stopped completely. Please check it out and see if something like that can help you. The medical world always puts something they don't understand into the "psychologic" category. But it can still be a mechanical issue that can be resolved with the right craniosacral therapist and/or chiropractor.
Could you please give us an update on if it is still working please. My son now 21 has been having seizures for 19 years, his seizures have always been the same. All VEEG's, MRI's everything is normal, they now say PNES. I am desperate to find an answer.
thankyou very much for making your video . I have these at night so I suppose I am lucky I also have epilepsy spikes too . I can't work out the psychogenic seizures and why they happen at night . Very strange they completely drain me at night I get the whole long long process of diagnosis and going through the long list of things it MIGHT be . Anyway keep going you are great thankyou so much .
Thank you for sharing. Is PNES also confused with Narcolepsy? My wife is having these issues too. The Neurologist is saying it is PNES but the Neuropsychologist thinks it could be Narcolepsy.
My daughter is going through this right now, she is 19 and had her first job only work one week and then she started having pnes and possibly epileptic seizures again. That's been a month ago so far solid month she has had two to six episodes or seizures a day. She is not herself she has not come back to baseline, she talks more like a child van a teenager. We live out in The boondocks so to speak, so it's hard finding doctors and therapists that are equipped and willing to treat her. Or even thinking about moving to a different state closer to a good Hospital so that we can have the treatment she deserves to get better. But honestly I'm not sure what treatment that is. Can you let me know the medications and or therapy that has worked for you..? Thanks for being brave enough to make this video! I'm going to share it with my daughter God bless!
It's interesting because I have epilepsy and being sick, stressed, overstimulated, etc. can trigger my seizures as well. I have also read that a lot of people with epilepsy ALSO have PNES and I wonder if people with PNES sometimes have undiagnosed epileptic seizures since most of their seizures would not show up on an EEG. For example, i had several EEGs before I was finally diagnosed with epilepsy because they didnt see any abnormal activity at first.
I found out today that my 50's daughter has PNES. What a shock this was! Now, her life will be totally turned around! She has had petitions mal seizures since she was 2 years old...now this!
Hi, this is an amazing heart warming video. Thanks for making and sharing this. A friend of mine is having seizures(PNES) from the past 8 days. How are you doing now? And, do you know of people who got completely cured of PNES?
Thank you. I still have PNES but it's not as bad. I know my tiggers and can feel a seizure coming on for the most part now. And I have heard of people who don't have any anymore.
@@phone7x7 Wow. I am so glad to hear that. Can you please tell me about what treatment you have been going for and how do people get cured of it? Thanks.
I am so sorry you have to deal with this so young. I made a video about how to have a better quality of life even if you are going through this. Things do get better. Keep fighting.
We will fight this together. I'm preparing to launch my first videos on the subject. Thank you for sharing. There are answers. Please tune in. Bless you. Stay strong.
I have days where my whole body jerks and there's nothing I can do to stop it! Im on alot of meds, eplium 800 twice a day, I have alot of disabilities and two of them are chronic pain conditions, FM and CRPS! So most of my life is spent in bed due to my conditions and im incontinent so I go through about 6 nappies a day! Xx
I suffer from PNES sudal sezuires I started having mine when I was 23 or 24 years old everytime I had fights with my mom about my pnes she didn't understand anything about it we would have fights about my sezuires saying their fake when their kinda real but no cure that can help I am doing therapy I see a psycitrist I went to see a neurologist that's when I was diagnosed with pnes their so annoying and stressful my body gets num my heart beats fast then the room spins then I fall and start to shake and flale around and I suffer with anxiety and depression
I use CBD Oil and Neurontin to help with my non epileptic seizures. It helps me tremendously.. I still have seizures once While but before I was having them daily three or more times a day.
Thank you! It's actually my friend's dog. I was over her house. I do have a cute video of my dog though. You should check it out. It's called Buddy: The first three months
Hi, I have been diagnosed with FND and have seizures too but my doctor said it doesn't look like seizures to her. I want to say thank you for this video. I am waiting to see a neurologist in January but having trouble getting around atm coz I can't walk properly so that's driving me crazy. Anyway I was wondering if your eyes roll back and you can't talk properly when you seizure or if your back arches? I just want to know what's going on with me and I will not settle with just FND I feel I have the wrong diagnosis 😘 xo
@Damian Reynolds I still have FND no change but I am on Tegretol tablets that do help me a bit, the heat seems to trigger my shaking still. I've gotten use to it now and just come to except that this is what I'm like now. Thank you for asking how I'm doing, very appreciated 😘 How are u doing now?
@Damian Reynolds yeah I know how you feel, I have bladder and circulation problems too. It all will get sorted out eventually I hope. Wish you well and all the best 😘 xo
Thank you so much for sharing. I haven't met anyone that has PNES & it helps to listen to someone that understands what I'm going through.
I've had PNES since 2009 and also have a dissociative convulsion disorder as well. My disorders stem from severe PTSD due to trauma and other factors. PNES is very REAL, and it's an aggravating process to be diagnosed within the medical world for sure. Thankyou for reading up on it, so many people just shut the idea down that PNES is a fake illness.
It's so true and it's so hard I think much harder than epilepsy
I have pens it started when I was 4 i was having 54 a day they put me on different Medications which did not work and I had reactions to some clothes my throat shot others caused reactions of the skin they ended up putting a vagal nerve stimulator in in 2000 I went for years without having seizures and found out this year at 26 that I have pens still undergoing treatment I completely understand the Anxiety that the non-epileptiform pnes Seizures cause
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It is awesome to know more people who deal with our situation as well
I never did pass out but I had my first episode last year when I was 46. My muscles did not tighten up or anything like that but I could not control what my arms and legs were doing. I would try to move them but they would not do what I wanted them to do. Tried talking to my wife but all that would come out was grumbling. I had a slight headache for literally about a month prior to the seizures. Had 2 episode in one day. Went to emergency room twice, I don't think they were understanding what was going on. Went to a neurologist that really had no explanation and told me it was just one of those things. Put me on a seizure medication and away I went. Lost my job over it. I was completely aware when these episodes happened and remember them like they happened yesterday. I haven't had any problems for close to a year now but I'm still on the medication. I think we all deserve a real medically scientific answer to what is happening to us.
Thank you for this video and the insight. As someone who is a caregiver to someone who has PNES (we believe - we know he has seizures and he is not epileptic), who is also my best friend and like another brother to me, I want to state how ANGRY I am at the lack of knowledge and education there is on this subject! And this includes doctors - their lack of understanding and compassion is appalling! I'm tired of seeing him completely fine and then out of no-where dropout - sometimes literally - sometimes he convulses, sometimes he doesn't, sometimes he turns grey - It as awful and you feel helpless! There is something more to it that has not been discovered by medical science! Makes you feel like we're back in the 1800's! Please keep up your work and doing what you can to bring awareness to the world about this perplexing disorder - God bless!
Thank you for this video, this is exactly what I deal with. My neurologist diagnosed me with this and basically said there’s nothing he could do and he said he would give me clearance to drive. Not even considering that I have intense fear of driving. I have had several seizures at work I usually try to go to the bathroom and lock the door and lay on my side. I been Out of work for 3 weeks, but i just got another job working with dogs. They keep me happy and it has reduced my stress. The fact that you said that when you feel overstimulated by the environment and how you have a seizure when everything is calm it never happens right then and there...
You saying these things just helps me feel like I’m not crazy and that this is a real thing that a lot of people deal with and just as you said it’s just that the medical books have yet to understand it. Please keep making these videos they are very much appreciated.
In the process of getting diagnosed with SOMETHING by a neurologist, which I highly suspect is PNES.
I've also been out of work and university with mental and physical health problems, in the process of applying for disability, and been working in the ways that I can to make a better life for myself and build my self worth and self esteem after being out of things for so long. TH-cam is becoming a part of that for me, as well. I cried a bit watching this video, and hope to contribute to others in a positive way similar to this. Thank you for sharing your experience, especially with the intention of supporting others.
Hi, I have non epileptic seizures. I just wanted to thank you for sharing your story. I was in a car accident in August which left me with a traumatic brain injury with seizures. The doctors don't know and they will try to give you anything. But doing research helped me out and being in the medical field. To everyone you all are on my prayers. Take care and Merry Christmas.
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My seizures started 6 months after I busted my head open & had to have 6 staples put in.
This is What helped me!!!!! (Not that it will work for all but worth a try). Reading through the replies I noticed that most of us have almost exact symptoms, doctor run-arounds, tests, experiences, etc. I just wanted to say that my PNES has not been active in 2 years now, and I credit a very good therapist who did EMDR therapy with me. Like most of you, I have been through hell and back, but just wanted to share what actually worked to keep mine away for so long now. Love to you all!
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thank you :)
I have been unable to get into a therapist who this in New Mexico.
I've had this since 2006, I'm 30 now. I can't work anymore and I live with my parents. I also have a severe spinal cord injury that has left me unable to walk for more than 5 minutes a day or my legs paralyze. My parents find me on the floor shaking, with a blank stare, and they're not healthy enough to pick me up. I'm unable to recall much of the events. I usually feel extreme terror before it occurs, go to find my parents and just collapse and my memory goes. It began after my first dad died, and he was my world.
I was diagnosed with this illness sometime last year. I have been fighting for disability since 2014. After 3 incapable law firms, 4-5 appeals, 3-4 times denied, my case got closed then re-opened, incompetence from a few judges, and it hurts me when people in my family and other people i explain this too think because i have two arms and two legs that i can work and the ignorance pisses me off. You mentioned how you feel seizures coming on before they happen and that’s called auras (warnings). I get them each time and the recovery is like a vampire draining you. I also get absence seizures and clonic seizures. I choose not to renew my drivers license because i don’t want to take a loved one from someones family because of me committing a selfish act. I live in NYC so transportation is everywhere. Plus, it’s cheaper, faster and no ticket paranoia. Keep fighting and don’t give up on social security. If your parents are very supportive like mine are then girl you got this. Fight, survive and overcome to live. You go girl.
Know this is an older video, but thank you for being willing post about it. Its not easy at all.
Hey I really appreciate it. I was just hoping it would help someone out there.
My 13 yr old had her first PNES on X Mas in front of everyone. We got the diagnosis yesterday. Thank yoy for the info so i can better understand what shes feeling.
I'm sorry to hear that. Yeah it is hard getting the diagnosis, but once you know it is good to rule out things.
Hi Heather, I couldn’t private message you but if you don’t mind, could you please message me? I have a question about your daughter.
Thank you so much for making this video. I was diagnosed with PNES back when it was called pseudoseizures and I wish I had an outlet like this then. I have been through everything you have and all I can say is keep going. Every day is a new day.
Thank you! I am trying to be optimistic about my future and take life one day at a time.
Great job....I look forward to hearing more from you. Its sad when your diagnosed with something that the medical community doesnt understand and they label it as something that isnt real....but you know its real...they just dont have the knowledge to deal with it and they cant admit they are stumped. Makes you wonder how many things they do treat, that they really know how do deal with. Im glad youve come so far and become strong and want to help others. Exciting to know your going to create here. Almost always, when we think we are hitting a wall, its actually us waking up to a calling, that shows us what we are suppose to share with others....Honestly I think with something like what your dealing with, is an issue that happens reguardless of what your going through but people who have seizures etc are effected more by stress, good or bad. Peoples bodies handle pressure and repair differently. Through all your experiencing you will connect the dots and be able to counsel others in a way that makes them feel much better, when having to go through medical issues and so many slaps in the face from a place that should be building them up. The more that people can come together on these type of things the better and quicker there are things we can do to change the misconceptions and find real help.
Thank you so much for your comment. Yeah I try to be positive and have hope. I hope that this video helps someone.
I also have PNES and it is hard to do a lot of things, thanks for sharing your story
Thank you for your testimony. I was diagnosed about 6 months ago after a year of testing and misdiagnosis of epilepsy. This condition can be a hard pill to swallow. I recently found a great psychologist. My hope is that we can inform the public and get rid of the stigma behind pnes.
You're an amazing person and I'm not just saying that. I have a sister like you who is amazing. When you talked about psuedo seizures and how it's wrongfully perceived, I must confess I too remember when I thought the same and it now breaks my heart. When I see my sister and as I see you, I see a warrior who needs not to worry about self fulfillment because you are so much more than you, me or any one on earth can imagine. I love you and God Bless.
Thanks so much for sharing your story. My 17yr old was just diagnosed with PNES last week. She had her first episode on March 5, 2019. Her job called me and said that she had passed out and was having a seizure. It wasn't good. She had 70 in 4 days. Today was her first day back to school and she had some more. Im so stressed. We are all just trying to understand all of this. Your story helped shine some light. Thanks again.
Its has been a little over a year now since my tremors episodes started. And all the doc I have seen still don't know what is going on with me. Its frustrating at the same time discouraging to have your life altered and not know or understand why. Plus it don't help to feel like no one around understand or docs are giving up because they don't know or think your faking. But your video has helped a lot. I am experiencing a lot of the same things you are, thanks for the video.
I have this as well. I really appreciate your being vulnerable to share your story it takes a lot of courage.
I am having the worst time. I have been diagnosed with PNES and I am in the appeals process myself. I feel so depressed and awful. And no one seems to know anything. Thank you for making this video. It was so nice to hear someone actually talk about it. My name is Jessica and if you ever want to message, please do. I am stuck in middle of nowhere, cant drive and I honestly don't have any friends. Im 37 and lonely and confused and scared. So thank you for your comfort. It means more than you know.
have had pnes for almost two years now I feel your pain.
Each of you keep the faith. Continue to not only love God but yourself. Pnes is extremely difficult to deal with. Make sure that you continue to keep a good support group around you. Learn to laugh at your own self as people tell you things that you have either done or said during you're episodes. We are all going to get through this. I am so proud of the young lady who produced this video. Please pursue your passion to serve. I wish I would have thought of something like this. Old people and electronics, not a good, idea, stressful. Of course I can only speak for myself. I do good to remember to put my wig on, LOL!😄
Peace 💖
You are so brave and an inspiration to me . Thank you for the video.. Get a good lawyer for your SS .I know you will get it . Keep the faith and take your videos with you to court Have the judge watch them too And fight for your disability..
I applaud you for speaking out. It's so frustrating to suffer from PNES or any seizure disorder for that matter. Some people believe and support you while others think you are 'faking it.' In 2015 I was diagnosed as having the PNES in addition to my epilepsy that I was diagnosed with at 6 months old. Since age 12 my seizures became uncontrolled and I am unaware of when the actual PNES set in but I have my suspicions it was at the same time. My childhood trauma stopped, my epilepsy treatment stopped and my fibromyalgia pain and various seizure types set in all around 12 years old. My epilepsy is now considered refractory or drug resistant and the PNES is a constant as well. I've struggled for the last couple of years trying to fit my seizures into that threshold that they define into PNES episodes that doctors claim to relate to my childhood trauma but it doesn't seem to fit. My episodes don't occur during any recognizable triggers. And so my question stands when a seizure occurs 'are they epileptic or not?' I've asked doctors about how to differentiate between the two and they really can't tell me a straight answer, except that I'm a complicated case since I have both and have multiple seizure types. I've looked at my medical records based on the video EEG and the two episodes based to diagnose my PNES on were episodes that I recall having my fibromyalgia pain. Recently I started questioning the doctors again and they confirmed what I had suspected. My fibromyalgia brain fog could be considered a type of non-epileptic seizure. My primary thinks my fibromyalgia may be somewhat related to the childhood trauma; therefore, episodes where I get the brain fog could be considered PNES since they mimic seizure activity, though generally not my tonic-clonic/grand-mal seizures. Those have been confirmed as epileptic activity. I was once told by one doctor even before my PNES diagnosis that I was going to have to search for my own cure and what worked for me since nothing they tried seemed to be working. I truly agree with that doctor on that. She knew my history and had been on the journey with me to treat my conditions since I was 19 years old. Unfortunately she is gone but with my new info gained I am powered for the search. For me it is basically a connect the dots journey. My main struggle is trying to figure out which seizure is epileptic and which is PNES when I can't figure out a trigger and I am not having an increase of pain due to my fibromyalgia. If my doctors can't figure it out without an EEG to my head, how can I especially since stress can bring on epileptic seizures as well. It's basically a complex journey that I will probably be going through the rest of my life. Basically taking one step at a time. I'm glad you are appealing the decision. My judge felt as he said I 'just had anxiety over my epilepsy' and the appeals council refused to look at my paperwork. With any seizure disorder we aren't faking it but many just don't understand. I basically depend on my parents who live off their social security since they are seniors. I don't know what I'll do in the future since my seizures are frequent enough I can't work and my mom is basically at my side all the time but I'll try to keep searching for that answer and that cure. All our stories are different but we share a common bond. Take care.
Julie Otto Good luck. Thankfully my disability did eventually get approved since this video. Yeah I haven't found a treatment that works. Maybe one day they will figure all this out. ❤❤
My mother is 52 years old and has been having seizures since she was 8 years old. She is currently on a combo of 3 different seizure meds, the ER staff and EMS know her by first name... By making this video you've just answered many questions for me and have helped me navigate advocating for her. She has a history of abuse and mental illness. This makes so much sense. Thank you!
jessamylyn I'm glad this helped. I hope she finds a treatment that will decrease the number of seizures she has. ❤
I been having this problem when I was 17 years old. It was very scary for me i use to have them at school all the time. Im 21 years old taking keppera abd prozac. I still have PNES through the month but im also going on disability and I'm waiting for my appeal as well. Thank you for sharing your story i definitely can relate. I been going through this since 2014
Tamia Williams Hey I'm 17!!!! It is scary, I was diagnosed last year around my birthday which is in december
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Good morning beautiful people 😊❤️ I just found out that I have PNES seizure , I fist got sick on May 06, 2017.... And been seeing a neurologist-I'm 52 yrs old. I want to thank sara I watch your
video and a few more, trying to understand what my condition is...... I do have an appt with my neurologist Doctor this tues .... Staying positive....Praying 🙏🏼 take care 💜 Blessings ✌🏻️❤️😊🎼👏👼🏻🇺🇸⚓️🕊 Teresa
I was just reading through some of the statements/stories on this site. And yours caught my eye, I'm in agreement with you in prayer that your healing will manifest in Jesus name and you'll be free and whole. Remember to put your armor on each and every day. God is always there with you.
Peace💖
My almost 16 year old daughter has only just recently been told she is sufferning from this. Her first "event" was while she was away on a Girl Guide camp over 6 hours away from our home. We are in Australia and this is something I had never heard of so came across your video while Googling. Thank you, you have helped me to understand a little more about what to expect as we begin this journey.
Great video! Very articulate, please keep up your good work to help others. I have great respect for you and your courage!
cynthia van rens Thank you so much. I am happy to bring awareness. Is there anything I could cover in an upcoming video?
I really know nothing about PNES but because of your video at least I am aware. I live with severe RA and of course with one auto immune disease there is usually a cluster of others. I'm always interested to read about how others fight their own wars with disabilities. I know how hard it is to continually modify your life to cope. Your idea to learn about video equipment and share your progress, thoughts, feelings and info for others is such a positive step. I congratulate you on your positive outlook {I know how hard it is sometimes!} and hope you keep taking steps forward to learn, grow and bloom! A few things that have worked for me: eat as close to the dirt as you can. Don't stop moving and love yourself! Wish you all the best! Stay on your good path.
My husband was electrocuted 1 month ago. Had his 1st ambulance ride and developed seizures. It's been a hard month with some drs taking this seriously and some who think hes faking for attention. His seizures are totally real. Loss of consciousness body convulsions the whole bit. It wasn't until a dr actually saw with his own eyes my husbands seizure did they get him x-ferd to directly to cardi and neuro. (Had irregular heart palpitations aswell) they had him on a 36hr continuous eeg with cameras. While connected he had 2 seizures, the eeg didnt catch it only the cameras did.
I have learned so much about PNES in the last 3 days since his diagnosis. Your encounter with PNES felt and is as real to me as I have witnessed for my husbands' seizures. We have a difficult road ahead of us. The irony in all of this, is that he is a direct care provider for disabled adults. Now, he is the one needing more care. All I can do is support, love him and try to figure where to go next in our journey.
I recently developed this condition and it’s so unknown that it’s difficult for people to understand much less treat. I appreciate you sharing what it’s like for the world.
Thank you.
How brave you are! I have also been struggling with pnes and severe ptsd for about four years now. It is so good to hear from someone else who goes through the same struggles. I am blessed with two amazing teenage daughters and the most supportive husband. Without them I would be lost. Friends and family who understand or at least try to understand are so vital to our every day. I wish you many good days and eagerly wait for more videos from you.
Tanya Ceccato Thanks! I have have a few other videos about pnes. Check them out.
Tanya Ceccato What other topics concerning PNES do you think I should cover?
I was just diagnosed with PNES, it all started 3 months ago out of nowhere and it has really taken a toll on me. I still work thou I've had 3 attacks now at work, my license has been taken away and I feel like I lose a piece of me with every attack. I'm really trying to keep myself together but it's been really hard. I had my first attack in my sleep 2 nights ago. It was so intense that I definitely hope I don't experience another. I'm afraid everyday. This has taken over my life.
I'm so sorry you have had to go through this. It is so rough. I know for a while I was having them every day. Focus on your mental health and try to start fresh each day. People have a hard time understanding how hard it really is. I'll be praying for you.
One thing we can all do is pray for one another and come into agreement with one another for our healing. I have worked with a chiropractor for years. And he has been able to help mine with the lifting up of my brain stem from my head. It's very slight but it takes me out of an episode. I understand different things work for different people. Continue to smile and know that this is going to be alright. Have the God kind of faith! Peace💖
Hi yes, I'm going through this too nice to meet you Sarah
are you still dealing with pnes?
Thank you for sharing your experience. I was diagnosed with PNES a few months ago after many years of frequent episodes. I cannot work, and I would like to be on disability but people around me keep saying “oh surely there’s SOMETHING you can do.” 😔 I have CPTSD and experienced a TBI in my late teens...I’ve been told I need therapy but I’m struggling to find the resources for it. Lately I’ve been having a lot of episodes when waking up from bad dreams, but sometimes they’re just out of the blue when I’m feeling ok. I wish there were more obvious triggers....sometimes I get a crawling sensation on my scalp, but not always. Anyway, I’m a new subscriber and hope to hear more about your experience. Thanks again. 🦋
I am basically a mirror of all you talk about. This has been a 2 year journey for me and it started when covid hit also just a few months after I had a tumor removed from my brain! Of course people around me in my family worked and those got Covid so eventually so did I. We had a struggle to understand if this was Long Covid or something related to my brain tumor. It took about 4 times passing out cold abd many other seizures then the 4 days miserable hospital stay gorgeous them to say you gave pseudoseizures... then I was packed up and shipped home. It was extremely difficult for me to find good help and I am also now in my 2nd year and appeal process for disability. I am beginning a cognitive behavior therapy with the epilepsy team specializing in non epileptic seizures at UCLA! The Dr mentioned in the article I found your video I'm is head on the department. I was so happy to see your story. It helped me see that im not alone. Thank you for your bravery in telling your story and bringing awareness to this little understood disease. You have a sister out here who feels your pain. Often 2-3x's daily! We should compare kites and share experiences and advice!
I hope you are getting better. I really need to do an updated video soon. Check out my video on mental health.
You are very strong explaining like this and it's a topic that some people do not understand
thank you for this post. the more i research, the more i believe this will be my diagnosis. been active since 12/30/2018
Hi, I'm 54 and have been dealing with PNES for 3 years now. I have been on disability for 2 years. I have found there is an entire community of people that have this same problem. Most Doctors know very little about out problem and show little interest in learning anything about it. I don't know about anyone else but I feel I am being sent to these older Doctors just to placate me. I feel your frustration.
th-cam.com/video/gcioCjMEqrM/w-d-xo.html
Thanksa lot for your thoughts. You are very strong woman. Take care.
Thank you for sharing your story. It’s so frustrating and it feels good to hear I’m not alone. I just hope to get to the point where I can drive again😔Stay strong! Share an update if you feel comfortable.
God bless
I just saw your video and thank you for telling my story. I am so lost right now just learning and dealing with this since last November.
God Bless you. I admire your courage. Keep up the good work you’re doing.
I have seizures, I went to a neurologist and she did an egg, it didn't pick up anything, but I didn't have a seizure during it. The neurologist basically told me that my seizures are from my anxiety and said she couldn't do anything for me and sent me home. I have complex PTSD and a lot of mental health issues. I go through a lot of stress at home with my mom. Stress brings them on. I need to get an egg where I stay, because I had the half hour one done before and didn't have a seizure during it. One of my online friends has PNES, so I think that's what I have. My counselor diagnosed me with them, but my parents don't think my counselor can diagnose me with something, even my PTSD. My seizures have Been getting worse overtime, I get them in stores and restaurants. I am going to be 18 this month and my dad is trying to pressure me into driving. I know I can't drive with my seizures, but my parents don't think they are seizures because they ruled out Epilepsy. In the future when I move out I really want to get a service dog, I have 7 different disabilities that qualify for a service dog, and having a service dog will make daily life easier for me. There is this online course that I want to take after I graduate in May, and the job I will have after that course will be remote.
Hey, ive been recently diagnosed in 2018 for the exact same thing. Not a lot of people understand this. I am so happy I have found more people going through the same thing. Been hoping to find a support group. I would love to talk to other people going through this.
Thank you for sharing your experience with FND and these types of seizures associated with that. I was diagnosed this March by my Neurologist who also manages my Hemiplegic migraines. I wonder how many others out there with this disorder have had CPR done due to them stopping breathing. I've had that preformed 4 times and it is still being investigated as to why I had hypoxic episodes. Did you ever hear about the disability you appealed for? Mine is still on the maybe pile with the appeal tribunal.
I just had my first set of psuedo seizures today that lasted all day and it's very difficult to deal with because I can be laughing and talking one min and then be having a seizure the next. I can tell when its fixing to happen because of the way my body feels. I'm glad you made this video. I subscribed to your channel and hope to hear more about your journey
I had a huge cluster of them yesterday. It has gotten much better the past two years, but hasn't gone away. What would you want a video about?
Very well spoken!! I wish you the best of luck and it is great to see you helping others. Good luck with your new editing software. You will be fantastic!!
Amy B Thank you so much!
+Amy B Thank you so much!!!
I am a private singing teacher and one of my students has this condition. Singing has really helped her in many areas. I believe in music therapy. Maybe you should try that.,
I just finally got on disability, and I just got diagnosed with PNES after I got disability. I hope you get disability soon. Its not an easy fight, just don't give up.
Thank you so much for your bravery in sharing. Your story is so valuable to us.
Thank you for putting this information out there. You are so sweet and personable.... a natural on camera. My 45 year old daughter has been diagnosed with this, and continues to have a very difficult time accepting it. As her family, we thought she faked these episodes as a form of attention and manipulation, but I've come to learn more about it. Such a difficult disorder to treat. Hugs hon, and much luck in your TH-cam endeavor.
These are not fake, they are brought on by trauma (from the past). I have this too, plus PTSD. Your reaction to her medical problems leads me to believe that you yourself may be suffering from a personality disorder such as narcissistic personality disorder. You can get therapy and treatment for it, and you would want to do it to cause less trauma to others and heal your relationships. There is also one called Antisocial Personality Disorder. Maybe you have trauma in your past that made you act narcissistically towards sick people with neurological disorders. You can work through your trauma issues in your own therapy so you don't end up taking out your frustration on disabled people with seizures. Do not make the person with seizures the family scapegoat. They have enough problems to deal with already, what with being in pain a lot and having seizures.
Good job , i recognize so much you say. Got emo and all. I have just read about this new science study. It basicaly says people with pnes and ptsd are missing some dna that make them more stressfull.
Hey, and thanks for sharing about your PNES. Even though I have been suffering from the same epileptic seizures since 2006 I control my seizure attacks because before getting those attacks I get signs or images which is the first step toward our PNES attacks. The second is our heartbeat, which must be calmed down by soft breathing.
Hence, I find a place where my in a conscious state for the next few seconds and then start breathing and cool my mind. after few seconds when your heart believes in me that everything is alright, automatically the attack comes down. Till date, I do have these attacks but only in my dreams. if i have them some where in my conscious state i control them
My 15 yr old was diagnosed with PNES. This video really helped me.
I'm glad. The beginning is the hardest. Praying for y'all.
Its not great you have these too but its nice to know your not alone ..ive suffered with these years over 21 yrs n the stress it adds to you just worrying about having another .really doesn't help!!..ide had mini stroke too in beginning as scans said as bleed in brain too....recovered from all this c#@p but still worries you all the same especially the young....much love n debbi vasileiou...stay chilled.!!
Thanks for your video, today I found out my seizures are non epileptic and due to stress or trauma.
Thank you so much 😩my son just got diagnosed with this . We are in hospital now
I have this too and it is very hard! Thank you for sharing
Thank you for this video. I have going this as well and asthma attacks. I truly understand how u feel and ur experience because I'm going through it as well. Keep up the good work on getting information out there because like u said, a lot Dr don't know how to treat this condition. Some Dr can only do so much and therefore they recommend different psychology, psychologist just to name of few. Knowing ur trigger is a huge thing to try to treat this condition. It might not go away as I'm learning but will maybe make it more barely able. . I glad people are starting to acknowledge PNES and realized it isn't fake.
Hey I have also got asthma and probably PNES (waiting for money to get a diagnosis). Also PTSD. Anyway it's good to see another person who has asthma and PNES like me. We are awesome and beautiful and strong people. I joined a choir to help me breathe better, have you tried that? :) It really helped my asthma, slowly working up to holding those long notes. :)
Thank you very much for the info that you are giving because I am going though some testing to see if I have PNES
No problem. I thought sharing my story could help someone. It's a hard process to figure this out. Good luck.
Thank you for sharing your story :) I have just recently been diagnosed with PNES and it is a scary disorder!
You're welcome! It is scary but it can get better. I'm having less seizures now. I still have them but they aren't as often. Good luck.
I have these & my neurologist told me to tell any medical personnel that I'm have PNES seizures & that they are indeed real just an unknown cause for them. At least I've got her on my side.
My 21 year old grandson has just been diagnosed with this. He has been on 2 epilepsy meds and only getting worse. My daughter does have epilepsy. But after so many trips by ambulance to ER.And a 3 day brain wave test it was not epilepsy but Pnes.it is a horrible thing to describe.
Good to hear from you with pnes
I have got the exact same diagnosis and symptoms.
Not allowed to work and had collapsed at work and ended up in hospital er.
often pnes is accompanied by clustor B personality disorder
It is not uncommon for a diagnosis for Borderline personality disorder as a commodity.
I will be seeing a doctor next week
Good luck. I don't have a personality disorder but I know not everyone who has PNES is not the same.
I agree with everything you're saying. I was diagnosed with the same thing. I started having them so bad I was being rushed to the hospital from work. My job told me I couldn't come back to work unless my doctor releases me. I have wrecked my car twice and I'm not allowed to drive or work. This taking over my life as well. The neurologist saying it's not medicine needed for this. What we are experiencing is real an not fake at all. I have them every day like 5 or 6 times in one day. It's scary and the doctors don't want to talk about this illness its a hushed thing with them. This affecting my life I can't work nor drive.
It feels so good to know that I'm not alone
Hi! I’m glad I came across your video. I am diagnosed with Epilepsy. I’ve gone through all the testing and the same type of story as yours basically. No answers in my tests either! Like, there is nothing showing in any of my tests. Your video gives me a few more questions to ask for my upcoming appointment in March. I have also applied for disability and have gone through the process quite a few times. This will be year 3 or so for me and I am in the Hearing stage with Allsup right now. No clue if they will deny me again. :( chin up! ❤️
Lindsay Walton Sorry you are going through all that ❤ Good luck getting disability! I was able to get it!
It's wonderful when at least you can have a name attached to something physical. I see your post has been up here for a few months. I hope this message finds you doing much better.
Peace💖
So glad I'm not the only one. As a teen just trying to ges school while being blind, (I go to a school for the blind) and having PTSD, PNES just made me feel like I'd failed in life. But now I don't mind so much. I mean, I do, but now I know it's not just me.
thank you for sharing, never give up!
My triggers are : sleep deprivation, being sick Orr missing my seizure medication.
hi, i have this illness too, may i ask, what medication do you take? my doctors only want to give me antidepressants
Why the heck are you on antiseizure medication?? You don't have epilepsy.
I had a neurologist tell me for 2 years I was having PNES. I Finally sought a second opinion with an epilepsy clinic. They said like me a lot of epileptic seizures don't ever show up on EEG. That's not a basis to diagnose PNES. I recommend anyone diagnosed with PNES get a second opinion with an epilepsy clinic. Have someone film a seizure. My new neurologist put me on two seizure meds and I haven't had a grand mal seizure in a year. There is nothing to be ashamed of if you suffer from PNES. It is a medical condition. But if you actually have epilepsy and the seizures can possibly be controlled it is worth the second opinion.
My 13 yr old boy hs this. Right now I am battling with the school to put him on an IEP instead of keeping him on the 504 plan that we put in plce last year. The problem is that the school psychologist, the person who will be evaluating him for the IEP, dtetermined last year that my son was refusing school. She called his PNES episodes "a refusal". Like he concously refuses to be schooled and so he v=basically fakes his PNES episodes. I cannot even begin to describe how this makes me feel. After all that we have been through in dealing with his pnes, we have people accusing him of faking. It makes me so angry I want to explode !
Wow that is awful! It makes me angry too. Man I wish I could help. I hope things turn around.
Paul Arnold I suggest getting a neurologist to write a letter on behave of your son. As a former dyslexia teacher (thanks to my own PNES), I know schools can be such a mess as far a technical things like IEPs go. It will greatly help your case to have a doctor backing you up. Don’t trust that the school will do the right thing so to speak. They are basically working from a government checklist and not their own minds or hearts. Your job is to educate them, not hope they’ll educate themselves. If all else fails, work with your son on how to cope. If PNES causes bullying or insecurity, teach him to find a strong self-worth and set goals that extend beyond his current situation/school. If PNES causes him to miss out on classes or even a few words in a lecture, have him make friends with someone in the class that takes good notes or can be a study buddy. Also, setting meetings with his teachers to personally discuss his condition can do wonders even without an IEP.
I hope this helps.
I have pnes. I keep losing jobs due to them. I'm trying to get disability for it
My G/F got diagnosed with this today. I got a long road ahead of me trying to make sense of it all.
i also have PNES and im 16yrs old. what hurts me the most is that nobody cares anymore. my mom doesnt believe that i have this ongoing condition, my dad just watches me have a seizure and wont even help me. worse still when I'm at school, i get different comments from people.. sometimes i feel it coming on, like my heart races, i get confused, i feel my muscles getting weak.. so i go to the nurse's office, but sometimes i dont make it bc its so far and i end up having a seizure while people are staring at me. it just makes me lose hope in myself. no one supports me and its devastating. i tend to withdraw myself from people and large crowds during school or anywhere because im so scared of what could happen.. its so hard to move on and carry on with life
That sounds terrible. I hope you can get some help. Try and learn your triggers and have a few close friends that know what to do. Easier said then done I know. ❤
I just got told I have NES last week. first it was pass outs they told me it was pots then I got a pacemaker. then this. I have a lot a day yesterday was bad had 8. thank you for sharing your experience.
Melissa Jung I'm glad you liked it. I had a bad night too with a cluster of them before bed. We have to keep fighting though and try not to let it run our lives.
phone7x7 I am so trying to do that.
phone7x7 : Is your dog a SERVICE dog ? Does she or he let you know AHEAD of time when you are about to go into seizure mode ? I'm glad that my brain WARNS me that I'm about to get hit. Then as quickly as possible I'll head for the bed and ask for assistance from the nursing home staff here. I am SO SUPER GRATEFUL that you and other members of the You Tube family are now sharing your expierences, in regards to this disease. This disease and my diagnosis of C.O.P.D. ( A very, very, serious IRIVERSABLE lung disease ) have COMPLETELY DEMORALIZED ME ! I sincerely thought that I was LOOSING my sanity. But thanks to nice people like you, I have regained some of my confidence back. Do you know what it feels like, when one feels that they are TOTALLY USELESS to them selves, family and Society at large. If it weren't for a "FEW" VERY DEAR CLOSE "TRUE" FRIENDS giving this 65 yr. old emotional SUPPORT, I fear to think, of what I might have done to my self. But due to them and even the GOOD COMPASSIONATE strangers like yourself, I WILL continue to march on. W?e ?out here in You Tube land will be looking forward to more postings, that you and others will publish here, in regards to this terrible heart breaking disease. Bye, And Many Blessings to you and all who contribute ! 👍😇😇
How do you Like That ? Wow thank you so much! I was hoping this video would be encouraging. Keep fighting! Also no that is my friend's dog.
I have pnes as well with no one to understand it with me 😳
Thank you for sharing!!
Need help. Im literally going through this alone... nobody knows how it feels
I have just been diagnosed with this😔 I have been having seizures for over a year and a half. I am very depressed over this. I am trying to get help now. I was already in process of applying for my disability. I am going through this with Morgan and Morgan attorneys. Thank you for your video. I am struggling with this... I feel ashamed of myself and useless. I am currently fighting suicidal thoughts. I have been victims of DV, rape and a severe car accident with skull fractures and a subdurmal hematoma in 1998. I suffer with severe panic attacks and headaches daily. I am trying to wrap my head around it.
I'm sorry you are going through all that. If you need to talk you can DM me. Also find support groups. I am part of a few on facebook. It really helps to find people that are dealing with the same thing as you. Also check out my video about what to do while waiting for disability.
facebook.com/groups/pnessupport/
facebook.com/groups/180958708605221/
th-cam.com/video/oc5dUjrlOmg/w-d-xo.html
Try slow movement based healing things like gentle yoga and chi gong. You can still do the yoga poses in between the muscle spasms, you just give your body time to jerk around in between and then go to the next pose. I'm just looking into Feldenkranz too...IDK about that yet.
I also recommend seeing a gentle chiropractor who uses an Activator and knows about skull trauma because apparently the skull bones do still articulate and can be shifted out of place and give you a splitting headache if your abuser has enjoyed bashing you in the head with his or her fists. But the chiropractor can put your skull bones back in their proper spots and your head will feel so much better. :)
Craniosacral therapy is great too and Altra Zero Drop Footwear (sneakers) so you don't cause back/spine/neck/head pain by wearing heels in your sneakers or shoes. The toe and heel are the same height in these shoes plus they have cushioning and great arch support. I get the trail runners because I like hiking in mud LOL yay nature. Going into nature reduces seizures. I have memory foam insoles for extra cushion so I do not get foot seizures. My ball of foot pain from walking has been eliminated thanks to these shoes.
I have a Gregory Women specific backpack with a waist belt to take care of my back and nerves to carry weight and have less seizures and less back pain. When I use a general backpack or one designed for a man or carry something on just one shoulder, then I get more stress on my body and more seizures. I must evenly distribute the weight of what I carry onto my hips and the small internal frame of the daypack also helps me stand up straight and not walk like a hunchback like I would normally do because of my habits and my back problems and all my neurological damage especially in my pelvis. Osprey also has some great packs. You can find them at an REI Sporting Goods/Camping Store and get them to measure your torso so you have a pack that perfectly fits your own body and works with the biomechanics of your body. I have a 16 inch long torso and a 16 inch long pack that fits all the curves of my body and distributes the weight well when all the straps are snapped shut (waist belt and chest strap) and the lift loaders are properly adjusted. I found out I really need lift loaders because they reduce pain a lot and seizures too. Do not get a soft pack. You need one with a metal or plastic frame inside to help you stand up straight and distribute the weight. They make small frame packs like 30 liters is about right for getting around town on a bus or on foot.
Do not drive, you probably will get more seizures from it; I did and I could have had a car accident. It is not save to drive with PNES. There are plenty of other ways to get around: bus, train, on foot, ferry, canoe, plane, hovercraft? LOL kidding. I have never been in a hovercraft but I have been in a submarine and I want to go parasailing.
Maybe after I get better once Harvard accepts me and heals me and I get my Harvard PhD in Environmental Sociology or Environmental Sciences. At least being in grad school currently studying the environment has given me some sense of purpose while I wait for Medicaid and try to plan my future. I can study and go to class around the seizures and extra sleep I need. People get a bit annoyed if I have a seizure in class but I just tell them I am disabled and they need to just not look at me. I then advocate for myself and tell people not to shout in my face because that will cause a panic attack and the panic attack will cause seizures. I have been shouted at by a couple of guys in my face in my classes and experienced that but I talked to the professor and dean to remind guys not to do this in class, especially not to me.
I also collaborate with the Office of Disability Services to get accommodations like longer testing times and student housing accommodations. I go to a state college (Texas State University), I think its pretty easy to get into these and they will let you in even if you are disabled and or homeless and or a human trafficking survivor, like I was when I applied. Just tell them about your disabilities and see if they seem to think you are still a good candidate for the school and your program of study. I tried Arkansas State University but it did not work out because everyone treated me badly so I had to go away and come here to Texas later on. Please completely avoid University of Idaho and University of Wisconsin. Both are very bad with regards to Title 9 and disability help. They do not care if you are raped on campus or if you were raped in the past and were trying to heal. They will scream in your face a lot of you are crying and will not stop. They'd rather accuse you of being drunk in class than acknowledging you have a psychological problem for crying and having seizures. Their counselors on campus suck and are self absorbed. I have never cried in any of my classes in Texas state, and I have only been screamed at by fellow students that gave me seizures and not screamed at by professors (but in Idaho professors will scream in your face, when you are already crying, thereby causing you a lot of seizures in addition to tears, so if you have PNES stay far, far away from Idaho...its also where I was trafficked as a child, so there are just a lot of abusive child molesters and KKK members living there. I'm so glad I escaped Idaho. Yay. :)
To celebrate graduating Harvard, I will take my friends in a hovercraft and go parasailing. Once Harvard heals me of my seizures. I tried sailing but that gave me extra pain and spasms/seizures. Because hoisting the sails is really hard on your abs. I cannot do horseback riding or any type of rock climbing with harnesses because this can lead to seizures and a severe painful vulvodynia flare up. If I can cure this PNES and vulvodynia, which I would love to do, I will ride horses and then abseil down a waterfall after rock climbing and then go cave diving (where you wear a rock climbing harness and then dive into caves with water in them and swim around, but you have to be seizure free for 4 years before the SCUBA associations will allow you to become certified. This is frustrating. I want nature adventures now, while I am young. At least I can walk around in nature slowly and then lie down in nature to chill and be happy if I get seizures. But there is so much more I want to be able to do and experience.
I try to find chiropractors here: doc.activator.com They're the gentlest ones. Chiropractic treatment does cause me to have some seizures on the table but as long as the doctor waits until my body is finished spasming to make the next adjustment and lets me lie there as long as I need to when they are finished before I have to get up and then lets me use the nice massage table when I am done, I get a reduction in pain from a really sore back and more seizures to reduce to no back pain and a lot less overall seizures for the weeks ahead. My chiropractor recommends I be seen twice a month.
I have this too. Just found out a couple days ago it had a name.
My infant daughter had this and the neurologists said there was nothing that could be done, as her "seizures" were not actually seizures. But she was having over 100 a day. I got frustrated with the medical world and scheduled 2 back-to-back appointments for her.... First with a very qualified craniosacral therapist and then straight to a chiropractor. Her "seizures" reduced that same day, almost completely gone. After one or two more treatments, they stopped completely. Please check it out and see if something like that can help you. The medical world always puts something they don't understand into the "psychologic" category. But it can still be a mechanical issue that can be resolved with the right craniosacral therapist and/or chiropractor.
Hmmmm I have never heard of that! I will look into it. Thanks for the info.
Could you please give us an update on if it is still working please. My son now 21 has been having seizures for 19 years, his seizures have always been the same. All VEEG's, MRI's everything is normal, they now say PNES. I am desperate to find an answer.
Hi.. a friend got PNES from the past 8 days. Do you know of more cases that got cured from it? Thanks a lot.
Thank you for sharing.
thankyou very much for making your video . I have these at night so I suppose I am lucky I also have epilepsy spikes too . I can't work out the psychogenic seizures and why they happen at night . Very strange they completely drain me at night I get the whole long long process of diagnosis and going through the long list of things it MIGHT be . Anyway keep going you are great thankyou so much .
shadowcat bygul Sorry that happens to you at night. PNES is such a mysterious thing. I hope you have better days ahead. ❤❤
Thank you for sharing. Is PNES also confused with Narcolepsy? My wife is having these issues too. The Neurologist is saying it is PNES but the Neuropsychologist thinks it could be Narcolepsy.
My daughter is going through this right now, she is 19 and had her first job only work one week and then she started having pnes and possibly epileptic seizures again. That's been a month ago so far solid month she has had two to six episodes or seizures a day. She is not herself she has not come back to baseline, she talks more like a child van a teenager.
We live out in The boondocks so to speak, so it's hard finding doctors and therapists that are equipped and willing to treat her.
Or even thinking about moving to a different state closer to a good Hospital so that we can have the treatment she deserves to get better.
But honestly I'm not sure what treatment that is.
Can you let me know the medications and or therapy that has worked for you..?
Thanks for being brave enough to make this video!
I'm going to share it with my daughter God bless!
It's interesting because I have epilepsy and being sick, stressed, overstimulated, etc. can trigger my seizures as well. I have also read that a lot of people with epilepsy ALSO have PNES and I wonder if people with PNES sometimes have undiagnosed epileptic seizures since most of their seizures would not show up on an EEG. For example, i had several EEGs before I was finally diagnosed with epilepsy because they didnt see any abnormal activity at first.
I found out today that my 50's daughter has PNES. What a shock this was! Now, her life will be totally turned around! She has had petitions mal seizures since she was 2 years old...now this!
It sounds very frustrating. I hope she finds some relief. ❤
Hi, this is an amazing heart warming video. Thanks for making and sharing this. A friend of mine is having seizures(PNES) from the past 8 days. How are you doing now? And, do you know of people who got completely cured of PNES?
Thank you. I still have PNES but it's not as bad. I know my tiggers and can feel a seizure coming on for the most part now. And I have heard of people who don't have any anymore.
@@phone7x7 Wow. I am so glad to hear that. Can you please tell me about what treatment you have been going for and how do people get cured of it? Thanks.
I've been suffering with this for 4 years nearly next week I'm 17 years old and it is hard to deal with I'm still trying to keep going with life
I am so sorry you have to deal with this so young. I made a video about how to have a better quality of life even if you are going through this. Things do get better. Keep fighting.
Find a support group. That might help you. I will put some links in the description box.
We will fight this together. I'm preparing to launch my first videos on the subject. Thank you for sharing. There are answers. Please tune in. Bless you. Stay strong.
I have days where my whole body jerks and there's nothing I can do to stop it! Im on alot of meds, eplium 800 twice a day, I have alot of disabilities and two of them are chronic pain conditions, FM and CRPS! So most of my life is spent in bed due to my conditions and im incontinent so I go through about 6 nappies a day! Xx
Thank you for sharing
I feel you.. I have PNES and PTSD..
PTSD and pnes can be correlated for sure. Check out my mental health and pnes video.
@@phone7x7 thank you
I suffer from PNES sudal sezuires I started having mine when I was 23 or 24 years old everytime I had fights with my mom about my pnes she didn't understand anything about it we would have fights about my sezuires saying their fake when their kinda real but no cure that can help I am doing therapy I see a psycitrist I went to see a neurologist that's when I was diagnosed with pnes their so annoying and stressful my body gets num my heart beats fast then the room spins then I fall and start to shake and flale around and I suffer with anxiety and depression
I use CBD Oil and Neurontin to help with my non epileptic seizures. It helps me tremendously.. I still have seizures once While but before I was having them daily three or more times a day.
Nice music for this. Sounds good.
Nice video! Your furry kid is cute. He looks so calm and happy! >^^
Thank you! It's actually my friend's dog. I was over her house. I do have a cute video of my dog though. You should check it out. It's called Buddy: The first three months
I've Had Arua Ever Since I Was Born
Gracias. Por compartir tu historia.
Hi, I have been diagnosed with FND and have seizures too but my doctor said it doesn't look like seizures to her. I want to say thank you for this video. I am waiting to see a neurologist in January but having trouble getting around atm coz I can't walk properly so that's driving me crazy. Anyway I was wondering if your eyes roll back and you can't talk properly when you seizure or if your back arches? I just want to know what's going on with me and I will not settle with just FND I feel I have the wrong diagnosis 😘 xo
@Damian Reynolds I still have FND no change but I am on Tegretol tablets that do help me a bit, the heat seems to trigger my shaking still. I've gotten use to it now and just come to except that this is what I'm like now. Thank you for asking how I'm doing, very appreciated 😘
How are u doing now?
@Damian Reynolds yeah I know how you feel, I have bladder and circulation problems too. It all will get sorted out eventually I hope. Wish you well and all the best 😘 xo