PNES: Non Epileptic Seizures. What is it/My story
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- čas přidán 4. 06. 2015
- PNES or psychogenic non epileptic non epileptic seizures is a very real disorder that causes seizures in which the person has no control.
Here is a little bit of info and my experience.
Instagram: reid.service.dog
Hi molly, hi readster. I think you are very brave for posting this video. My personal story is unfortunately very similar to yours so I know the stigma attached to this condition. Stay away from stress, sleep well and enjoy life. After so many hospital visits and sooo much money spent on it, after 20 years I only have one conclusion: nobody knows what's going on. These kind of videos will help a lot of people so keep it up.
You have made my day! I have been telling my doctor's for 2 years about this. That look* they give me.. can be crippling. Thank God for you! Appreciate you sharing.
Yay, I'm so glad this was helpful to you! Indeed those looks are not the most pleasant.. Hopefully you find a doctor who understands!
You’re amazing for posting this. I’m just now getting tested for my seizures. I didn’t even know about this syndrome until recently. From what I’ve seen, PNES is not highly researched. But it’s so ridiculous the stigma that surrounds the condition. The seizures feel the same as epileptic seizures, they have many of the same triggers (stress, fatigue, pain, etc...) and it effects more of the brain than epileptic seizures. What I don’t understand is that, regardless of the fact that these seizures are NOT in the person’s control, medical professionals are cold and judgemental. If it’s true that these seizures are triggered by trauma and psychological overload, doesn’t it make more sense for medical professions to be trained to in how to speak with respect and care? Everything physical is connected to our mental health. I have chronic pain that is due to something “medical”; however, when I’m stressed or fatigued, my pain increases. It took 27 years of mistreatment by Drs to find out what was causing all of my symptoms. I guarantee that I’m time, when this condition is more fully understood, they will be able to determine the true cause of this condition. Why do some bodies respond to pain in a different way than others? This is a diagnosis of exclusion - which means that Drs know nothing about it really. Fibromyalgia was thought to be a mental disorder for years and now they’ve found markers that are responsible for the condition.... you are awesome for bringing awareness to this medical condition. I really hope that as awareness spreads more research will be done. The shame that is put upon others for this condition serves no purpose, but it does cause a lot of damage. Thank you for your bravery.❤️
You are so right. Mind and body are absolutely connected and physical conditions can easily be exacerbated by stress. I mean, even people without any medical conditions might get stomach aches or nauseous before a big test or presentation or something! I'm sorry you've been having to deal with this type of treatment for so long. And thank you for your support!
I was just recently diagnosed with the exact same thing. I have been so weirded out by it. I've had quite a few "episodes".I actually had one last night and it's all been very confusing and nobody I know even knows what they are. I feel very embarrassed to talk about them because I know everyone thinks I'm weird. I have a cat named Tikki that helps me a lot! I have also recently started counciling. This whole situation has been so strange but it's getting a bit better everyday and it makes me very happy to know I'm not a freak and that there are other people out there who can relate and who understand what this is.
Hi 👋🏻 From me and my service dog Darcy Athena 😊
I was diagnosed with PNES 9/29/2023.
It’s extremely validating to hear someone with PNES say it’s real, terrifying, not fake, and it’s truly part of the seizure spectrum.
My Neurologist said I don’t have epilepsy & yet diagnosed me with PNES. It’s confusing when a Neurologist says that.
My PNES comes from PTSD as a result of Childhood Sexual assault & Sexual abuse.
It’s very real & terrifying.
Doing the hospital stay for EMU Seizure testing was a relief to get questions answered, but also terrifying going thru seizures it was mostly aware of what as happening. It’s incredibly painful & terrifying because of intense muscle contractions, thrashing your body around, & all this happening without your consent or control.
It was traumatizing just experiencing the worst seizures multiple times per day for 3 days, getting seizure rescue medication via IV(strong stuff 😅), and not having any family or friends nearby to visit. Plus my service dog could not be there because nobody was available to care for her basic needs while I was unable to leave the hospital room & when I was having episodes.
Idk if this is relatable to anyone, or if you would want to share your EMU Seizure testing experience or anything from your story…. But I would greatly appreciate hearing from others that understand what it’s like to live with PNES.
I have these too. It's so good to know that I'm not alone and that others deal with these too. Thank you for sharing
thank you for posting. my daughter in law suddenly started having seizures. she has had every test imaginable and her health is clean. she is being referred to a neurologist but I am suspecting these are the types of seizure she is having. thank you again.
Thank you Molly. these videos are amazing. I have to tell you that I have been in Your shoes. I am still battling with my medical team on whether I have Epilepsy, PNES, or both. it's been a difficult struggle. thank you for your time in telling us your story.
Hey, I'm so glad I was able to bring a little bit of support! Honestly the battle with the medical team was one of the hardest aspects of the whole thing. They don't make the whole accepting you have a seizure condition very easy.. I wish you the best of luck in figuring it all out!
Im so sorry that you arę suffering like this and not receiving better care. Looks like that big black carpet loves you to pieces ;). We're still not there in the medicine, still have very very far to go. Hope you have a good primary doc, I do and she even tho not a specialist is the key to getting me referrals and making me feel like I'm not crazy. You are years beyond where I was in terms of maturity and that works so much for your favor. Sorry if I'm not being very articulate. I guess I just wanted to pass long a hug. Hugs!!
Hi! I was recently diagnosed with PNES about a treo weeks ago..i have been dealing with this for over five years! I really don't understand it. and honestly I like it's described as if it's a psychological thing! I'm having torn feelings about this diagnosis...i admire your bravery And honesty and better insight
Hello! I have been searching for people with PNES for some weeks, i have had it fo 4 years, but is just diagnosed with it now. So it was nice ti see someone else talking about it too :)
I have had these seizures as well since 2009. Its a rough road.
Molly, thank you for being brave enough to tell your story. We have extremely similar experiences with our PNES story. It was of course immensely terrifying and still is. It got so bad I would seize for hours straight with my body completely contorted and cramped. Hospital visits were useless as they told me I was just doing it to myself (wtf), even when I fell out of the wheelchair and onto the floor seizing the nurse told me to "get off the hospital floor, what is wrong with you".. Doctors were even worse. Even a week in the hospital with scans, tests, neurologists, mds, gastroentrologists - no one had a clue. I eventually found a wonderful and brilliant neurologist/psychologist who ultimately diagnosed me with PNES. I was prescribed klonopin for when I felt them coming, and that was all that worked but I still felt horrible. I ended up going to a chiropractor after extreme neck pain and found out how messed up my back and neck was. I know dont know where id be if I had not of tried chiropractic. I never even knew what it was, I was like everyone else who religiously went to MDs. Anyway, a whole new world was opened up to me where my doctor wanted to find the source of the damn problem instead of treating the symptoms. It has been over four years since my last seizure. I still have issues but chiropractic helped me so much and though I still carry klonopin just incase, I have not had to use it. My head and neck pain were gone years ago and I still go for preventative measures or bad days. My crippling anxiety and panic disorder became manageable. I have saved tons of money and aggravation, but most of all I am no longer having seizures nor am I house ridden. I graduated with my bachelors and I am currently working on my masters. When not too long ago I could not even leave the house. You make me want to potentially tell my story but I am pretty private.. I actually cant believe I am writing all this to you, a stranger, on youtube no less. But I just had to share a bit of how we connected and what has helped me in just the off chance it might help you. I hope things have gotten better for you. Best wishes to you.
Hey! So sorry for the late response! Well first off, thank you for sharing all this, especially if it is hard for you!
I had an almost identical experience in the ER. Fell on the hospital floor and got yelled at by nurses and told to get up. And when I couldn't they slumped me into a wheelchair and tried getting me to get alert by pressing on my finger nails, which didn't work but of course I could still feel everything! The lack of knowledge is just... Mind blowing..
Four years?? That's amazing! It makes me so hopeful to hear that it is indeed possible to actually get over this. Even though my seizures have decreased from 10x daily to once or twice a week (more occasionally), I can't see it ever not being part of my life.. I went a month once, but then it all started again..
So are you saying that going to the chiropractor was what did it for you? Do you think the source of your seizures was mostly due to pain then?
Thank you again for sharing!
Thank you, sweetheart, for sharing this. I'm in similar condition. You're a hero for sharing this. It's given me some new insight. You may have helped me. Thank you!
KeithFoskeyMusic very glad I may have been able to help a bit! :)
KeithFoskeyMusic य
I have PNES and I got diagnosed two years ago I'm going to be a senior in high school I am very amazed of your videos hopefully we can get in touch it is a struggle it not a fun thing to live with when people say you are faking or you just want attention. It not a joke theses are real
Maryann S I'm glad my videos are meaningful to you! (That's what I was hoping for)
It's a big struggle indeed! I don't know if there is a way to private message through youtube.. but if there is feel free to shoot me a message!
Maryann S Maryann a have pnes for 13 year deal my life is depression i try every medical treatment a one meet you my name is dimitra
Do you struggle attending school? Of so, what has been successful for you?
I just started having these type of seizures in March, I've had Autonomic Dysfunction (POTS) for years and it was suggested that my body is releasing excess of stress chemicals causing the convulsions. I agree the stigma is horrible and I was treated the same way. Always asked if I'm stressed. I'm not stressed but my autonomic nervous system malfunctions and causes a physical stress reacting from not regulating my biochemical levels. So sad the medical profession immediately blames our mind. Stay strong beautiful I appreciate you sharing.
You are very strong molly..I know how scary a seizure can be i had one due to a video abt 5 months ago and it was terrifying not just that i was hallucinating during it..I wish you the best..:)
I have been diagnosed with seizure not pnes but I'm blown away with how simular are issues are. The reason I'm looking onto this is last time I went in ambulance a emt asked me if I have sudo seizures and it all I could remember him asking me over and over. And the word sudo I knew was either faking or something and I was really hurt. Watching this I'm going to talk with my neurologist about this just in case. So thank u for making it clear how its not faking them and nothing to be embarrassed about so if I do have these I could get proper treatment. So thank u so much.
Hi Molly, Thank you for initiating this very intelligent and moving discussion about PNES. I'm 75 and recently diagnosed with a mild (so far) form of epilepsy. My son, however, is 47 and diagnosed with a severe form of PNES--lots of falling and headaches. I learned a lot from you and some of your correspondents. One important lesson: there is no one simple explanation for the seizures people have. I came across your post while searching for info about how marijuana might help people with epilepsy and PNES. Three thoughts: 1) are you familiar with Lorna Myers' book on PNES? 2) have you tried medical marijuana? 3) have you searched CZcams for stories about how it might help?
Thank you for sharing this, it makes me feel so alone.
I was diagnosed with PNES about a year and a half ago and i just want to say that this video has helped me just accept it.
I'm so glad I could help! Feel free to message me if you want to talk or anything! :)
thank you so much! I feel lucky because I found the emotional source of mine have managed to heal from them. I went from everyday hours a day seizing to none. I feel like I'm constantly on the verge of one, but am still healing. just know there is hope!!
Thank you so much! That's incredible that you aren't having them anymore! I'm down to 1-2 a week now. Who even knows why..
I hope things keep improving for you!
hey can you plz help me. my dad is also suffering from non epileptic seizures. I have done all things video eeg, Mri etc etc. but doc are saying it's non epileptic seizures. kindly plz help how did you overcome yours
I was in a car wreck about a month ago where a semi hit me from behind. I am struggling with seizers.One doctor said that i have tremors due to anxiety another said pnes .I have a neo appointment Friday. I don't know what is going on with me but this video has helped me on some insight on another person dealing with the same thing possibly as me! It's very scary and doctors should not treat you like we are faking at all it's very real for us.
Hi Molly thanks for sharing your story, I myself have Epilepsy but... my stepdaughter has PNES. her seizures are while she is awake as I'm sure yours are as well. She was also made fun of and laughed at at the ER she went to several times. she now has found a doctor willing to help and not laugh at her. I watched a video of PNES People during these type seizures and my heart goes out to them and you. simply because Epileptic seizures we are unconscious I know mine are or (was). I have been seizure free for 9yrs now. my stepdaughter is awake during her seizures and in pain it breaks my heart for anyone that has seizures period. but to be awake (conscious) has to be so hard. keep your head up Molly and stay strong. God Bless ♥
Tammy Harrison I have had many in my sleep. My wife would tell me that I seized alnight
I’m having up to 30 seizure fits a day and constant seizure activity. I remember everything. I have had them for two years and still no diagnosis. They used to tell me they were panic attacks 🙄🙄 I can’t tell you the nightmares I’ve had in hospital!! Plus medics in ambulances. Shouting at me to get up of the while I’m having a fit. I got kicked out of A&E and fell over and hit my head. The neuro gave me some meds that resulted with Scottish yard looking for me!
I just got diagnosed PNES, It started when I became extremely underweight and malnourished. At that time I was battling an eating disorder 5 years in leaving me 74lbs and overworking to the point I'd work 21+ hours with only 5-6 hours between the next shift and it was general labor (working with removal of flooring) A lot of the time I'd try to hide it but it started affecting my work (I had 1 in a hotel while I was working in another city and another in the passenger seat of the truck, luckily I don't drive, however my dad was) I kind of kept it hidden because I was afraid of the stigma, afraid of losing my independence, my job, everything. The depression among it all was the crippling part because It scared me to death but at the same time I didn't want anyone to see me have one. I had my first full-on seizure at home. My parents called the paramedics and I would get these auras but I didn't know for the first few times until I really could grasp the feeling/warning signs of the aura. I would come out of a seizure and I would just cry non-stop knowing I had to go to the hospital again and i'd get extremely emotional when I was being asked simple questions when I was coming out of it, I would be completely aware and know the answers but it was always like I couldn't think of the word or what to say.
I'd also had seizures that had a pattern, it was always shortly before I got my menstrual cycle. So I was told it may be a condition called Catamenial epilepsy with the increased level/imbalance amount of hormones before menstruation because each date I was getting sent to the hospital it was always in that pattern. Hospitals in general I get really bad anxiety because of my negative experiences including with the paramedics that would be sent out (more than once,about every other month) from a call to the exact house by my parents. They basically told me I shouldn't "abuse" 911 because of seizures as if I could control it when I would have the seizures I would drop and go head first into the floor. I was put on medication however the side effects of the medication itself would later on cause triggers that would send me into a panic attack-state where I'd feel the signs of the aura and would begin having seizures again. The medication caused extreme headaches to the degree I could only say felt like an axe to the back of my head and I would go days without sleeping.
The not sleeping is something I noticed to be a main trigger because I suffer from chronic insomnia, when I go prolonged periods of not sleeping I'll get ticks and twitches and find myself not able to completely focus or be present to anything. Loud noises or things that make me feel extremely anxious it will trigger another symptom of the aura, seeing white dots and my muscles begin to tense up and look to my side. I always try to stay calm and at first I would try not to let people notice because if someone starts freaking out as if I'm about to drop into a seizure I felt like it will bring it on quicker because I would start to have a panic attack acknowledging that something doesn't feel right and almost feel like I'm forgetting to breathe, after that I get almost entirely disoriented and confused, and think about random things in my head, and then I lose my sight and I lose most of my hearing but not entirely... I can hear but everything sounds like it's as if I'm underwater and someone from out of the water is speaking, and once I kind of feel ~out of my body~ like I'm looking at myself everything from then I have no memory of.
Thank you for speaking out, it made me and I'm sure many other people less alone while battling this condition
Hey really appreciated your video, so 9 months ago I started having "episodes"
I would collapse to the ground tremors labored breathing ect. There was other times where I had absent seizure where my eyes blink and I'm gone for just a few seconds. They've tried about 6 different medications and nothing has helped i can have several in one day or I can go a few days without one. I go in tomorrow to get an eeg on my head I have to wear it for four days . My last eeg and MRI all came back normal. The last visit I had they discussed having pseudo seizures. It's such a tough road people look at me when I'm fine and say you look fine to me...... then I have a seizure and they are amazed by that. A lot of stigma surrounding it!
Thank you for this. I know this video is 3 years old- but there isn’t a whole lot out there. The stigma is very real- but so are the seizures. It helps to know I’m not alone. How have you gotten your seizure under control? Do you drive??
Two weeks ago I had a mild seizure, Today I've just come home from ER after having a more serious one. They did my bloods the first time I went and there was no epilepsy markers, I'm also aware of what's happening when it occurs. Two years ago I had a suspected TIA stroke, after which I've been left with regular speech problems. I sound like a baby learning to talk. It's really frustrating as the neurologist had diagnosed me with functional speech disorder. I've seen a speech therapist, who said my speech is fine. I just wish they could finally give me a diagnosis, I'm waiting to see the neurologist again.
I am literally sitting here at cmc Charlotte watching thing video that reminds me so much what i have been going threw the past 2 months. i was officially diagnosed with PNES today after 24 hrs of video monitoring i will be here one more night for extra precaution to make sure that i am not in fact epileptic and PNES. It is so frustrating to explain to people what is happening! most people think it is something all in my head... like you cant fake 60 seizures a day... now i have the official diagnoses. the doctor said it is worse to have PNES than epilepsy its self because epilepsy can be cured more easily than PNES.
Thank you for your video. I was
diagnosed with non epileptic sezisures in 2017. I had to change 2 doctors before. I finally found a neurologist that I could trust. How did you get your sezisure dog.?
Your friend Nancy Moule from Connecticut
I was diagnosed with PNES just a few months ago and being that this is all so new, I am having a lot of trouble accepting the idea that there is nothing physical that could be causing these "seizures." I've lost two jobs due to this problem and am no longer able to lead a normal life. I never thought of myself as an anxious person or overly stressed, but the doctors seem to think that they can categorize me as this person. Problem is that they've only known me during this stressful time. Of course I am freaked out at this moment. I am collapsing on the floor shaking, drooling, and unable to control myself. I'm not just gonna be all calm and collected upon meeting. I don't know how long it will take to come to terms with the idea of a "mental disorder" but I sure hope there is life after this because right now I feel like my life is over and I am completely useless. It is good to know others are going through the same issues, but I am at a loss right now. I really hope there is some light at the end of the tunnel. I wish you good luck moving forward. Have you had any progress since this video was posted?
+Samantha Sallade My initial months dealing with the diagnosis where extremely difficult. I fought every single doctor that tried to tell me it was mental, I convinced them to do test after test just to prove that something was really wrong... Most doctors have a very poor understanding of PNES and will make you feel like crap about it, but even if it's a technically "non physical" seizure, that does not mean it isn't absolutely real! I'm still not dealing well with the whole mental aspect. I mean I do have an increase of seizure and migraine activity when stress levels are high but that can be said with so many other illnesses! My roommate has a very real intestinal disease which always flairs up pretty bad when her anxiety is bad... I dunno, I still believe that something real is going on somehwere in there but I've just stopped fighting the doctors and accepted their theories... I'll make a new video soon (I've been super busy) but I've gone max 12 days seizure free so that's cool!
I was just told that my newly diagnosed Epilepsy is actually PNES this week. I've had anxiety my whole life but never a "traumatic" experience so I'm not sure how the PNES manifested. It's terrifying though. I don't do well on antidepressants, and I feel like therapy isn't going to do much as there's not eating away at me or anything like that. At least with Epilepsy the treatment is pretty straightforward, but I'm lost with this. My attacks are almost exactly like yours, and I'm constantly tired, dizzy, and out of it. I also have a service dog(in training) to be an epilepsy service dog, but with this new diagnosis, my parents don't think an SD is necessary as my attacks are "in my head". I'm really struggling with this diagnosis and any advice would be appreciated!
thanks Molly I liked the video I have epliespy and non epileptic seizures
Hey molly i love your videos. Ty so please do more
And instead of a beer cav i was running and sliped on mud joy my head on a metal sign lol so i feel NJ took jn
Thank you for this Video. Been having lots of testing done over the last 8 years. I've been having what I call "Dirt Naps" ever since I was in a 120 MPH Rear end car wreck. I was the rear ended. I was unconscious for almost an hour. Since then the migraines and the Dirt Naps began to escalate and got to a peak 8 years ago when yet again some rotten dog decided to crash my car. All this began the day after my wreck. I do not have the vomiting as many describe. I am told by family I get a flat look in my eye's as if I had already checked out, get light headed, May stutter real bad for a few days prior to, and get confused easy, sometimes will have spots or wavy stuff in my vision then I hit the dirt. When they first began I would remember nothing. now I can most of the time hear what's going on around me although it sounds fogged. I just can't move, open my eyes, talk Nothing I just lay there. Once I come to I am dazed confused and very weak. Sometime instant Migraine. Just want to go to bed and sleep. Can PNES be like what I describe? I am not on any medications what so ever. I was on meds years ago for Lupus but thought maybe these were causing more issues. Thank you again.
+Torrie Allen I think PNES can look like so many different things, your symptoms definitely resemble some that I have but I'm no doctor (though I don't tend to trust too many of them these days) only they can diagnose you.. They would say it's non epileptic if nothing shows up on an EEG test. Have you had 24 hour eeg monitoring?
I was diagnosed with PNES about 6 months ago. I had bacterial spinal meningitis and seizures as a baby. Since age 18 I've had a couple grand mal seizures, depersonalization, derealization, and multiple non epileptic seizures. Im 33 now and every MRI, CT scan, EEG, and ultrasound Ive had since age 18 came back negative. I began experiencing strobe lights in my vision in March 2018 coupled with tremoring. During my episodes, I speak jibberish, express weird and unusual thoughts, and deal with a tightness in the back of my neck that feels like my spinal cord/brain stem is being pulled out of the back of my neck. I spent 10 days in an epilepsy unit hooked up to an EEG and on the second day it was found that I have an excessive electrical discharge in the left frontal lobe of my brain. My neurologist told me that even while taking anti-seizure meds that my episodes may still occur. I was also put on an anti-psychotic but the meds have come up to such "therapeutic level" that they're ineffective. I am completely aware of my surroundings during my episode, can hear what people are saying, but am unable to communicate during my episode. I fight like hell mentally to want to communicate but there is some mental block that prevents me from doing so. Having this condition sucks because it impededs my ability to function, hold down a job, and just enjoy the life I want to have.
Fat Skeleton Have you considered Lyme disease (neuro borreliosis)? That comes with most/all of what you describe.
hi my name is Monsurat Balogun I have the same as you and people in my own town have not been nice to me because I am own as the girl that looks at men private parts. this started because I was having a lot of absences and then they would tell every men that comes on the buses that I would look at men's private parts. I get the shakes as well . When I would shake I would here people say "that's what she dos on the buses ". I here your story and some of what you are saying is like my story . Most of my Seizures but I don't think that they believe that I have short ones to. So I find that it make it worse. Going shopping was so hard people watching me all the time . Thank you for doing your video. So it dose not make me feel like I'm not the only one.
Hi Molly I've actually recently been diagnosed with non epileptic attack disorder and was wondering about getting a service dog because I have about 4 seizure a day. I was just wondering what types of tasks your service dog can do ?
I hope you answer my question, so 2 months ago I’ve been diagnosed with PNES.
Even though I have no control over them, I always feel like I can control it before it’s start.
Do you feel the same?
Sometimes I feel like it’s something that has to happened so I can feel comfortable, you know? Like when your stomach ache and the vomiting will make you feel much better.
Do you feel the same?
I’m not faking it at all but sometime as a mentioned before I feel like I can fight but I always end up having the seizure
I Have PNES And It’s Very Scary And I Was Getting Better But They Are Happening A lot More And They Say It Is Caused By Stress But My School Teachers And My Parents Don’t Think It Is Because I’ll Be Doing Something I Love And I’ll Just Drop....I’ve Been On So Many Pills And I’m So Sick Of Them...I Just Want To Be A Normal Teenager....I Wanna Get My Drivers And I Wanna Be Able To Get A Job.....Me And My Family Don’t Know What To Do Anymore!!!!!! Plz Someone Help!!!
Hi I think I have this kind of sickness since i was 12 . Do you have any medications prescribed by your psychologist because my eeg were normal and mri they didnt give me any.
I have PNES and have had the condition for a little over a year now. I am a Sr. in High school, and was curious if you wouldn't mind contacting me to talk about and compare horror stories. I have quite a few questions for you. everything i have learned about this condition was through my own research and i was hoping maybe you could fill in some of the blanks for me.
I have epilepsy and non epileptic seizures and anxiety to me thay fil very different .
After a epileptic seizures I have a headache and 1 fil very tired and I am very confused and I have no memory at all .
After a non epileptic seizures I fil dizey and sick .
After anxiety panic attack I get a pane in the chest .
I have epilepsy I'v had epilepsy since I was 9 months old and I am now 20 years old.
I have had non epileptic seizures and anxiety since March 2016 .
My epilepsy also Colsed Me to have learning difficulties as well .
Hello how are you? Thanks very much for your comments.You described everything all symptoms that I have. I am 33 years old .I am originally from Russia ,from 3.03.2003 live in Ireland with my parents,sister and brother.In 2005 year one small brother else born)I have cerebral palsy mild left handside spastic hemiparesis (left arm and leg affected) ,have problem with vision and seizures In 1997 year Russian doctors made MRI for me and detected cyst in my brain. This is cause of partial epilepsy according to their conclusion. In april 2009 Irish doctors carried out epilepsy monitoring and found course of epilepsy.they offered operation but it was a risky and me and my parents refused to do it.I take keppra and vimpat.in 2017 they again carried it epilepsy monitoring and canceled diagnosis eilepsy,they said that i have conersive seizures (epileptic and non epileptic together).Be honest I disagree because in case of non epileptic sezure memory doesn't disapear.Me lose my memory always during/within a seizure. I remember what was before seizure but don't remember what happened during and within. I have no seizure of I sad or disapounted.it can happen if when I am relaxed or positive mood. I start have aura fee days before it happens.I am apolgise for long comment.If anybody give me good advise I will be thankful. God bless you and your family and everybody in the world
What is it with EMT’s and ER doctors being horrible about this! I have never had a positive experience with either and it’s created massive mental confusion and issues honestly.
I think I might have them. I have flashbacks from my past and I start going into one
I just started having seizures and I haven't been diagnosed as yet but I'm afraid I may have epilepsy with nead.did you have an eeg
Yesterday was the first day I couldn't talk verbally to the ems but they unfortunately know me and I could here them but not see BC I had a collar on and so it shut up my bottom half and my mouth was so cotton ball that when I did actually come too I couldn't say anything and
I just got a heart loop put in and it was hanging on my chain humongous thing can't miss it but then when we got to hospital RUDE DR.came in said look ______I know seizures can hurt you but they can't make you NOT talk!!
he then preyed off the collar to feel it i signed yes when he asked if it hurt
then he saw my necklace and he said oh is this fashionable or medical?!?! and then when he realized there was an implant in my chest he kinda seemed to magically disappear!
but I literally can feel you on that one I hate hearing ppl saying pseudo seizures..... Just doing it to s show off......etc
mmmhhhh/ggggrrrr....... Come just come 1 day and walk a day in my shoes especially after I fall straight on my back headfirst then leaned on my bad hip
I don't even bother telling anybody nor go to the hospital when I have mine,they treat you like crap at the hospitals,mines brought on by lights,sound,smells and just anything,I could be reading a book and have them.
A friend of mine had to do CPR on me a few months ago because I stopped breathing and my heart stopped. But, the strange thing is, I heard and felt him doing CPR on me. I didn't gasp for breath while he was doing mouth to mouth. And when doing the chest compressions, after a few times of him doing that, I heard and felt myself make a small puff sound in the chest below the breast plate, in the middle of my chest. Then the other night (two nights ago), I had it for 11 1/2 hours before gradually easing from having them. But, a while later, I had some more convulsions, for about half an hour or an hour before stopping again. This started around 11:30 pm a friend of mine told me. I was visiting him at his apt. I never had convulsions for that long before; 11 1/2 hours.
(sorry for the late response!). Geez 11 1/2 hours... I can't imagine. The longest I've gone was 2 hours and they were stopped with ativan. God that must have been exhausting!
That's so weird about your experience with the CPR.. I can't even imagine what that must have been like...
Yeah, it was exhausting. When I went to dr.'s appt and asked the dr. about the time when I went to er for fast heart rate, I was having Normal Sinus Rhythm with QT Prolongation. And when I done research on that, it has a symptom of seizures. After researching that, I now believe that is was from the heart beating out of control or something while having seizure. This was week or so after I went to er. But, I didn't do research in what the diagnosis was in er before the cpr incident until months later.
Now I know I have more cause in having seizures: pnes and heart problem that also causes seizure.
Thank you so much for replying back. I forgot about this comment I sent to you and about this video until just now when you responded. It's okay that you responded late. We all are busy to the point of not being able to be on the computer for a long period of times sometimes. Forgiven.
Thanks for forgiving me! Haha for the heart stuff did you do a thing where you were hooked up to an ambulatory monitor for 24h? I did that to make sure the seizures weren't heart related syncope (which it wasn't lol) but yeah I know that heart stuff can do that
No. Once I was in the hospital, they did the ekg just for a few seconds and that was it. I stayed in the hospital for a few hours and then got released to leave. I wasn't having seizure at that time. I was having different symptoms then. I had a friend call non-emergency number and had the ambulance come out without sirens. I wasn't sure if it was emergency or not. When the paramedics came out and checked me out, my heart rate was way faster/higher then the pulse rate. They said I really needed to go to the er. So I had my friend take me there. This was when I got diagnosed in the er "Normal Sinus Rhythm with QT Prolongation. The seizure and cpr seconds after seizure had happened the week after the er, on Sunday after 2 am.
How did you find out about your gene mutation? I had my first seizure two weeks after starting my first ever antidepressant at the lowest dose, and I've only ever had seizures when I've been on antidepressants or soon after weaning off.
hey so for me the gene mutation has not really been related to my seizures. what happened is that I got serotonin syndrome twice (one year apart) on normal, even low doses if antidepressants. because that is so rare they did the generic test and found that I do have a mutation that prevents me from metabolizing serotonin properly.
hi molly my name is ryheem I need help with finding out more about pnes. I was just told by my epilepsy doctor that I don't have epilepsy. but the episode I'm having are hard to understand there are some cases where I'm like stuck in time my feels like it's spinning and I dase out some I'm none responsive I'm doing research on pnes can you give any more info or things to look out for.
Hey! I'm so sorry it took me this long to respond! I think I saw the comment and was going to respond but then forgot about it! The only way to truly know if you do not have epilepsy is by doing a long term video eeg. Usually they last about 3 days. When I did mine they captured many seizures but none of them showed signs of epilepsy and thus I was officially diagnosed with PNES. Everyone's symptoms kinda differ so it's not like there is a clear cut category for each symptom. My seizures definitely vary in how they feel/what they look like. I hope that helped..? Even if it's 6 months late! Feel free to ask any questions!
Do you have videos of your seizure?
ya I know how are you feel I have it 4years p.n.e.s
Hi watching your video I couldn't help but wonder if you might have iih. Iih is a rare neurological condition that causes headaches, diplopia, tinnitus, blurry vision, etc, and is associated with PNES. Iih stands for idiopathic intracranial hypertension. You should look into the signs and symptoms and maybe have an eye exam if you feel it's in line with what you're experiencing.
An eye exam with dilation will show if your intracranial pressure is up because high intracranial pressure causes papilledema (swelling of optic nerve)
I know it's years later but I started having all the symptoms you mentioned and I passed out on 7/16 and started having seizures. Three weeks later I was diagnosed with IIH. The Seziures only happen when I pms and during my period. I go for my EEG tomorrow. My neurologist thinks my seziures are pnes but can't say for sure until she gets the results. What I find weird is that you said that IIH and PNES go together when my neurologist didn't even mention it. Also doctors are so quick to say everything is due to anxiety when I actually did have something else wrong. If I didn't push to get a spinal tap I could have lost my vision.
I have PNES and it is beyond frustrating! In the very beginning a lot if not most Doctors believed I was faking them! This is such a horrible thing to say because it is so real and it is terrifying knowing the medical field that is supposed to help you doesn't believe you and you are left helpless. Finally my Drs are getting somewhere. It is sad I know so many people going through the same thing.
+peacelovecookies56 It's really ridiculous the amount of doctors that tell us we are faking, or it's all in our heads... PNES common enough that they should have a base line education on the matter!
YES!! Totally agree! I could not tell you the number of doctors I have seen regarding this issue, and only one ONE has given me comfort by saying they are not fake they are very really especially to the person experiencing them! It is terrifying and I really just can't fathom that someone would ever want to fake something so serious! It is scary and not to mention life altering! I was working driving hanging out with friends and family now none of that. I can't work, can't drive and worst of all I have completely withdrawn myself from everything just in fear that it might happen again and no one understand or know what to do. I hate when people see it and call 911 because they never take me that seriously. One ems told the er nurse "oh she probably just wants to get out of work tomorrow" WOW Oh well I can rant and rant about this all day because it is something I am pretty passionate about and know far too many who have gone through the same thing! I feel as though someone should take a stand and raise awareness on this issue because it seems to be getting nowhere anytime soon!
+peacelovecookies56 Literally everything you just said, I could have said myself!
I heard one paramedic (I can always hear during my seizures) say: "Well, if you're gonna fake it, better fake it well like she is!"
Like.. Just.. WTF??
My favorite is when I'm unresponsive and they start doing sternum rubs or pressing on my fingernails to try and see if they can get me alert (which they never can) but in the mean time I can feel all the physical pain it's causing me. And they are always so impressed: "wow, she's really doing this well. Hope it's worth the pain.." Like they are ligit there attempting to hurt me the best they can to see if I'll respond which I WON'T!
(I could go on and on too!)
I really hope you don't isolate yourself further. I went through an intense agoraphobia stage last year where I barely left my house for weeks. Missed all my classes, secluded myself from everything and everyone. It just gets worse and worse. You gotta make that step outside. Remember that, yeah you could have a seizure, and yeah it's a sucky experience when people call and freak out (which is why I have a medical bracelet which helps sometimes) (having the dog also helps) but it's not the end of the world! You are causing yourself more pain by letting the fear take over, trust me! Once you take those steps out the door it gets easier and easier!
I've definitely thought about eventually trying to do some sort of something to raise awareness and educate. The amount of us who have had these horrible experiences with doctors is outrageous!
I can also hear everything while having my seizures and I had one in the ER waiting room as the nurse came she whispered "this is totally fake" then proceeded to do the sternum rub which had little to no effect on me besides that it was tremendously painful!! Which left this horrible and sensitive bruise on my chest so bad it hurt to breathe. If it were so fake why take precautions such as these to treat me! Also I was just wondering (because this is how it is for my friend and I) if you experience a rapid pounding heart rate right before you go down? For me that is my essential warning sign I will just kinda stop what ever I am doing in the position I am in and just stare, it feels as if in that moment my hear stopped and picks back up rapidly and my eyes roll back and down I go.
I really hope that things do get better not just for me but for everyone who has to experience this.
+peacelovecookies56 I know what you mean by taking the precautions if it's fake! Covering their asses while still being jerks..
I get the pounding heart sometimes. I actually tend to only get it in a scenario where my dog alerts me and I'm in a place or situation where I REALLY don't want to have it. I think it's more related to anxiety about having it. But other than that, I get the starring for a while, the falling and eyes roll back immediately and violent (or sometimes less violent) convulsions. i have had times where I start starring off and the dog is able to get me out of it by licking me and nudging my arms constantly!
Hye molly i have pnes too, by looking at this video i don't feel alone anymore thank you !!! I got one question
When you have a seizure, are you like aware of everything cuz when i have it i'm not aware of anything like it's just black and i don't hear anything i'm just gone
hey! personally I'm aware of everything. I can hear and feel all that is going on around me but can't respond. One time I broke my finger during a seizure, felt the whole thing but couldn't do a thing about it till after I came out of it.. but with Pnes everyone's symptoms are a bit different
oow okay, i'm sorry for your finger. I don't know if you get this question a lot but there isn't medication right? I'm trying every docter there is and they say the only medication is therapy, but that doesn't seem to help what did they tell you ? Thanx for your respons ;)
No, unfortunately there isn't any medication even though I've been put on so many.. I'm on anti migraines (for my migraines) and I'll take ativan when I have too many seizuress in a row to break the cluster or to calm down anxiety (which may sometimes trigger a seizure itself). They told me therapy too but I haven't been. I have bad experience in the past with therapist so it's keeping me away. I couldn't tell you why but my seizures have gotten less frequent on their own in the past 2 years (from 10 times a day to 1-2 times a week). So.. I don't know what it is..
ooh okay, i have it now 2 times a week but sometimes it's like 20 minutes other times it's 45 minutes and it also can be 1 hour or more did that happen to you?
chaimae sahri I have had them last all day or all night. I would fall asleep in one and wake up hours later and still be having one. Also please avoid bathing by yourself. Only take showers. I almost drowned a few times. My wife had to perform cpr and I was spitting up blood. So be careful please.
Hey Molly, I'm wondering if you've been to therapy for your seizures, and if you've been, if it's helped. I have a friend who has this, and she's been through a lot of trauma. I'm a bit frustrated with her, because she doesn't seem to be actively doing anything about them besides using a cane to help her walk and missing a lot of school. So I'm a little confused if the disorder is mostly caused by deep-rooted psychological distress why people who have them don't just go to therapy. And don't get me wrong, I do understand how challenging seizures can be, I'm an epileptic myself-luckily I'm down to just a couple seizures a week. Anyways, if you could touch on this it would be greatly appreciated. Sending love from the East Coast!
Hey Isabella, I can understand that as an epileptic you might be frustrated with your friend who in your view may be able have her seizures get better with therapy? Unfortunately it's not that easy. Personally, my seizures are not related to trauma (that I am aware of) though I do have a history of being in an out of hospitals as a teenager which probably affected me in some way even though I don't think I ever thought of it as traumatic..
I haven't done therapy for my seizures. (I've been to therapy in the past for other things though). I did try to see a therapist last year in the hopes that it might help, but she had never even heard of PNES and had no clue what to do with me. PNES is very misunderstood in the medical community. Often times, psychs want to send us over to medical doctors and medical doctors want to send us over to psychs.. So it's a very frustrating process.
In terms of your friend, I do not know her specific case, but "not doing anything about them" is maybe a little harsh.. Personally it took me a long long time to accept that there was no "physical" cause to my seizures, so the idea of tackling them through therapy seemed out of the question. I honestly still have a hard time accepting that there is absolutely nothing physiological going on.. Imagine having your seizures, all the symptoms you experience, how real they feel but then, nothing turns up on an EEG, being told it's all in your head.. It makes no sense. Maybe that's where she's at? How long has she been having the seizures? Maybe she's still in a bit of a mourning and nonacceptance phase?Have you tried talking to her and seeing what's going on with her? I personally got very very depressed when it all started with me. I went from being a normal college kid to moving back home, unable to cross the street or even go up the stairs without someone standing next to me in case I went down..
I hope this helped? Also congrats on your seizure amount lowering! Hope that continues! Good luck with everything :)
I just got diagnosed pnes
I have both PNES and epilepsy it is very stressful especially when doctors think your faking all the time or paramedics laugh thinking it's funny sometimes they yell at me to stop. I was diagnosed three years ago.
Sorry for the super late response! But yeah, I've had that so many times where they thought I was faking or in full control of the situation. But like.. even if that were the case, how in the world would yelling help! I'm curious, do you know the difference between your epileptic seizures and non epileptic?
+Molly N my epileptic seizures are grand mal and my non epileptic seizures are atonic
Ah okay. Do you have one more frequently than the other?
+Molly N my non epileptic seizures occur a lot more than my epileptic seizures
+Nikki Montagna what about you?
i have a super dumb question, but are you aware of what's happening during the attack, or is it like you're fainting?
I'm actually completely aware of what's going on. But completely unable to respond or control anything. it's actually pretty frustrating cause I can hear what everyone is saying about me or how they're gonna call 911 and I'm internally yelling at them not to but there's no way for me to actually voice it..
oh god. i'm sorry you're going through this. i'm actually writing a book and i have this one character diagnosed with NES, so I'm trying to understand what is exactly going on. you're a strong person and i admire you :) thank you for answering so quickly.
Hey, sorry I didn't respond to this before! Are you writing a fictional book? I'm curious about how you heard of pnes, since it's not really known among the people who don't have it. But yeah, if you have questions, ask away (I'll get back to you sooner this time!)
Yeah, it's a fictional book :) I'm a psychology student and there were a few words about pnes in the material but nothing specific, it was just mentioned, and I kinda became really interested in it. That's how I heard of it :)
Oh cool. I'm also a psych student, though haven't come across Pnes (even if we talked about psychosomatic disorders in my trauma class) but my prof had never heard of Pnes which I found weird
I got pnes
It is a mystery
To those that have delt with PNES through education, and parents with children diagnosed with PNES: did you struggle with education for you child? What was successful and what was not?
Truth Betold I am in education and suffer from PNES... I do struggle, I feel like I get nervous about going out...
I do suffer. If I take up a book to study , I'll have the attacks .
Who's faking when you almost drown in tub and come out needing CPR while spitting up blood.
I am 17 years old and was just diagnosed with pseudo seizures and it is hard I have a whole life ahead of me but since these seizures have occurred it has made foster care hard.
I’m so sorry to hear that
The good news is...You're really pretty lol
I have PNES and PTSD, but the episodes are not fun at all.
Did you check your Vitamin D3, Calcium, Magnesium and B12? Almost always any so-called psychological illnesses are due to prolonged deficiencies in your body. For example low Vitamin D3 will interfere with dopamine which will cause stress which will cause seizures, anxiety etc. I know psychiatrists don't like to listen to this
I've been in and out in hospitals, doctor appointments, trust me. all my levels are constantly checked
+molly neher Well they check your levels but levels have to be touching the upper end not the lower end. They will tell you, your levels are fine even if they are touching the very lower end. Check if your D3 was above 150
+James Bond trust me I'm always very proactive about wanting to know all my levels to the detail. I'm always aware if there are issues
James Bond it's interesting you say this. I run a seizure support group in Sussex UK and I've noticed that having unofficially suggested people get their vitamin D levels measured every single person in my group at that time had either low levels or had markedly low levels!
Dont you get any warning before your seizure
Not really.. Well not in time to do anything about it. I start feeling them coming on only a few seconds before hand and by then it is usually too late for me to do anything about it.
DarkAngel42410 no
This is why I don't want to seek medical help
Maybe it’s having an existential crisis
7:26 - 12:36
Please take the time to read the bible at Rev. 21:3,4. Very comforting to me
Don’t say you have epilepsy if you don’t.
Oh good lord