Psychogenic Nonepileptic Seizures (PNES), also known as functional seizures, are a real neurological condition characterized by seizure-like episodes that are not caused by abnormal electrical activity in the brain (as seen in epilepsy) but rather by the brain's response to emotional stress, anxiety, trauma, or physical illness. Despite medical tests like EEGs typically showing no abnormal electrical activity, the symptoms are genuine and can include whole-body shaking, muscle contractions, unresponsiveness, difficulty breathing, and extreme fatigue. PNES is recognized as a genuine medical condition within the broader diagnosis of functional neurological disorder (FND), and it is not fake, attention-seeking behavior, or something a person consciously chooses to do. Treatment focuses on addressing underlying conditions such as anxiety, PTSD, and depression through cognitive behavioral therapy, stress management, and other therapeutic approaches, with many patients experiencing improvement or remission with appropriate care.
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Walk 235 – PNES Is Real: I Thought I Was Alone Until Now
Added:Oh my god. I didn't I didn't check I did not check how hot it would be out here. It is so humid. It is unbelievably humid.
Bad.
Bad. Bad. Bad.
Yeah, it's been raining a lot and it's still wet and it stopped.
So, I thought, oh, I will come out and do this walk. I'm not sure um how far I'd go cuz I didn't realize it was going to be this hot out. It is miserable out here. It's got to be upper 80s. There's a breeze, though.
Yeah, there's more dark clouds, guys.
Yeah, I think the rain isn't done yet.
It's very, very windy.
Yeah, and there's dark clouds in the sky. I'm not going to go around the block cuz I don't want to get stuck in a storm.
Yeah, it's gotten really bad.
So, I'm just going to go to the corner.
Some blue skies above me, but over here it's all black.
Yeah. So, there is something I want to talk about and only because I was in light a couple of nights ago.
There was, you know, I got to talking about seizures and how about 10 years ago, I was having these very bad seizures, guys. I mean, they were bad.
It was like epileptic grandma seizures.
It was bad. Um, sometimes I'd pee myself, you know, which was embarrassing.
And I also got very nervous about driving because you never knew when you would have these.
And uh but I really, you know, when I first got them, they weren't like really bad. They just was like maybe I'd have like one or two a week. And you know, they were paralyzing.
But I'm one that, you know, something's wrong with me. It has to be super bad for me to go to the doctors. I mean, like death. And when I had these, they would like be in like if I'm sitting in my chair and I'd have them. I didn't know what they were.
Um, well, I had an idea, but I wasn't really sure.
And, uh, it wasn't until I had my strokes that I was getting multiples of them a day.
When I was in skew, I was having like a hundred of them a day. It was just I'd have one, it would stop, I'd get another one. They ran all kinds of tests. they could see that I had, you know, my brain scans showed that I had strokes and stuff.
They also did um what are they called?
EEGs where they check the electrical parts of your brain for seizure activity.
And uh I remember when they were putting the electrodes and stuff on my head, I was having a seizure.
And then during the test, I'd have another seizure.
Oddly enough though, that none of those showed up on the test. They said, "Well, you're not you don't have epilepsy. You whatever this is going on, they're not seizures."
And so I was pretty much told I needed a psychiatrist.
Um, and they're just in your head.
And so even though I had them, you know, they were enough that they scared my family. I mean, I would just fall and go right into a seizure.
You know, my family would call an ambulance, they would come, you know, they would try doing IVs on me and all kinds of crap, you know, but they would, you know, it got really bad. I even had them at work and work, you know, um, after working there for 15, 16, 17 years, it wasn't like they were going to fire me, but when I had one at work, they would take me to the hospital. And it got to the point where they didn't want me working alone in one of the control rooms. I had to work with other people. in the main control room because of these seizures.
So, you know, it was really, you know, life changing for me.
Um, I I did go to a doctor for them, a neurologist, and he just said, "Well, they're not seizures." I said, "So, cuz I was worried that because of I had so many while I was at the hospital that they were going to take my driver's license away because they do if you're epileptic."
Guess what? They don't if you have these kind of seizures.
Now, back then there was no name for them or anything. You know, they just they just said they're fake. You know, if people had them if uh inmates had them in the jail, you know, just drop down into a seizure, they would just say, "Oh, ignore him. It's he just has fake seizures."
You know, and I always felt bad because I had them, too. And let me tell you what, they were not fake to me. They were the real thing. And so I always felt really guilty about having these. I got to the point where I told my family, I said, "Stop calling an ambulance when I have these. I'm done dealing with doctors saying there's nothing wrong with me and sending me home." And then I got thousands of dollars in medical bills I have to pay because the insurance company isn't gonna pay for it. So I said, "You guys need to stop calling the damn ambulance every time I have one of these."
I said, "Just make sure I'm safe and that I'm not going to hurt myself.
That's it. That's all I want you to do."
So my family just started ignoring them and thus I became the crazy old lady and it was very depressing.
It was it was no one no one understood. I felt like I'm the only person that has these damn seizures.
Nobody else has them. You know, if you you know, I've brought across millions of people that have a seizure disorder.
Well, that's might be exaggerating just a bit, but but nothing like this until the other day.
Um about I was put on medication for anxiety, severe anxiety about three years ago. So, up until like about four or five months ago, I no longer take any of that those anxiety medications. I'm on my own. I said, you know, I started cutting back and then I just went off of it completely about four or five months ago. But here's the thing, guys.
about two, three nights ago.
I'm I'm talking about these seizures and someone uh speaks up speaks up in the channel, you know, in our nightly channel and they said, you know, I have seizures, too, but they're not epileptic seizures.
They're non-epileptic seizures.
They don't know why I have it or anything.
And no medication helps. I've been having them for a long time and I still get them, you know, a couple of times a month.
They they've slowed down a little bit, but I still get them. I haven't had one um for about a year. I've been without him for about a year and I've always just said, you know what, carnivore, I've been doing carnivore. That must have helped me. You know, that's why I'm seizure free because I'm doing carnivore.
So, you know, big news, right? So, I've always used it as I've always just said, you know, I'm doing carnivore. That's why I don't have these seizures anymore.
Move this chair out of the trees.
And so, so I was always thanking Connivore. Now, true. That might be why I'm not having them anymore, cuz seizures do. I mean, uh, carnivore, eating carnivore does help with seizures.
So, I've always thanked carnivore for it. And I I still believe that that carnivore has helped me with my anxiety, my mental health, and everything and helping me get through life. But surprisingly, so it was me and this girl talking.
Her name begins with M. And I, for some reason, it's escaping me right now. But she was telling me that she had them and what they were like. And I was like, "Yes, yes, I understand. I had them, too." And for the first time, for the first time, there was someone else out there that was having these seizures, too.
But medically, the medical people say, "No, they're fake seizures." You know, you can go home, do whatever. You can drive. You can do whatever you want to do. Well, I was afraid to drive cuz what if what if, you know, but I still had to drive. I had to get back and forth to work.
So, I learned that before I went into a seizure, a full-blown seizure, I would get this like wash over me cuz I had so many of them. And it would be like a 15-second wash.
It's almost like you just you just feel it. You just feel this like warm glow or warm fog just washing over from your head to your toe. And I'd be like instantly just pull over. Just pull over. I don't care what you're doing.
Just stop the vehicle.
That was my my, you know, thought process. And I do remember a few times I did I would hurry, put on my blinker immediately, pull over on the side of the road. Once I ended up in a seizure.
the other times I had that that wash, but you know, that's where it ended. So, it was like, okay, I didn't have one.
And I'd wait for about 15 minutes, make sure I was fine. And I would continue to drive home and just be really careful and scared out of my mind because what if it just boom, seizure, you know? I was always scared, but there's no help for it. So eventually I just got to the point that I need to retire. I need to get off the road. And that was one of many reasons why I took an early retirement from my job was because of those seizures. And uh and of course I I was having a hard time walking. I would have to stop two times to catch my breath. I was so big. I was I was probably then about 380ish pounds. I was a big girl and cuz after I retired I grew even bigger till I blossomed before 100. But anyway, back to it, back to the story.
So me and this girl spoke for about 10 15 minutes and then this other girl popped in and said, "You know what? I I have those too and they can't figure out where they're coming from." And it's been it's been a little while, but you know, I remember having them too and they didn't know why. And I was like, "Holy crap." You know, I was like blown away because one person could say, "Yes, I had them, too." But now I'm hearing two other people are having these seizures, and they're like grandma seizures. I I've worked with with uh patients that had grandma seizures that had a seizure disorder. And I'm telling you right now that that's what I had.
And it's very painful. It's scary as all get out. You have a hard time breathing.
It's like you, you know, it's like every your body, all your muscles are contracting and you can't talk. You can't open your jaw. You can't you you have you're struggling to get in air.
You can't leave it. Your eyes are open, but you can't even move your eyeballs.
You're aware of what's going on around you. You're aware. You can hear. You can hear people talking.
Um, they're trying to get you to speak or to break through and you can't because you just, it's like your whole body is locked up and you can't do anything and you're convulsing.
But there's no medical proof.
So I was like after, you know, I realized that in that chat room there was three of us, three of us that have nonepileptic seizures. And I was like, "Holy how many more is there? How many more people that has had these?" And the medical people out there said, "It's fake. Go home. There's nothing wrong with you. It's all in your head. Go see a psychiatrist."
Not a neurologist. Go see a psychiatrist. I went to a neurologist.
And again, he said, "Until you get in an accident, until you get into an accident," he goes, "I have to let you drive. I have no proof. You know, you can continue driving." And I I was like, "Wow." You know, so I felt like there was nothing nothing absolutely nothing that could help me. I just had to live with this phantom imaginary thing that my body was going through.
So after those two girls said what they said, I I thought, you know what? You know, that was like 10 plus years ago. I wonder if it's a thing now, today. Is Is this real? Is it really our imagination?
What is causing these seizures? You know, what is it? You know, because I know they were real and they were painful. They were scary.
And I know being in the hospital when I had them and I was hooked up to monitors, it stopped. They stopped my heart, you know, there was evidence they stopped my heart and my my kids absolutely freaked out. So, all right. So, over the last couple of days, I decided to do some research. Is this real or is it all in our heads?
Because there's three of us. There's three of us in grandma's corner that night that had these severe seizures.
Guys, I want to tell you that yes, it's a real thing. It is a real thing. We're not crazy.
It's called PNES, functional seizures.
PNES stands for psychoggenetic non-epileptic seizures. PNES also known as functional seizures.
The terminology and medical understanding has changed significantly in the past decade.
So guys, this is a real deal. We're not crazy. It wasn't in our Well, it might have been in our head. It is in our head but not because of something fake. It's actually something.
Um, and it says here, important facts.
I'm going to read this from this printo.
Important facts. PNES is not fake. You hear that? It's not fake and it is not made up.
It is a recognized It is recognized as a genuine neurological condition within the broader diagnosis of functional neurological disorder FND.
During an episode, the person is not consciously choosing to have this seizure or doing it for attention because that's what I thought. My body was doing this for some weird attentionseeking thing and I wanted it to stop. I didn't want attention. I was a person to avoid attention.
EEGs, which is what I had, usually do not show the abnormal electrical activity seen in epilepsy, which is why they are called nonepileptic.
That does not mean the symptoms are not real.
And it gets into some of the symptoms of it. And I've had almost I I'd say I had just about every single one of these cuz they were really bad. Um whole body shaking or stiffening, muscles contractions or jerking movements, episodes of unrespon unresponsiveness.
I could not respond. I could hear them asking me questions, but I could not respond. It was impossible for me. I would try to like scream and but the only thing that would come out was, you know, trying to if they would say grunt if you hear us. I could go, [screaming and crying] you know, at will, you know, but I couldn't respond otherwise.
um difficulty speaking or the inability to speak during an episode. I could not um awareness of s surroundings while unable to respond. Yeah, that was me.
Eyes may be tightly closed during episodes. Sometimes they were for me, but sometimes if I had one while my eyes were open, my eyelids stayed open. I couldn't close them. I couldn't move my eyeballs either. But what I could see in that moment, what was like a window, I could see what was going around around me, but I couldn't move my eyeballs to look directly at somebody. I could only stare forward.
Um, difficulty breathing or feeling of being unable to catch one's breath. I had a difficulty breathing. It was like a lot of energy to try to inhale because all your muscles are contracting. They're tight. So, it's very hard to try to breathe cuz it takes muscle movement to inhale and I didn't have control over that. So, it was very hard for me to breathe. Um, trembling, uh, collapsing or falling. Yes, you can do all of those. Extreme fatigue after an episode. Yes, I would be extremely tired. Muscle tired, body tired, not just mind tired. It was it was like a fatigue that was more than if you were just sleepy because you've been up all day. It was full body exhaustion episodes lasting several minutes or longer. I have had some that have lasted for about five minutes, some that has lasted for 20 minutes or longer.
Imagine having a seizure.
You drop to the floor. You have a seizure. Your family calls 911 to get an ambulance there. The ambulance people come in. You're still after all this time. You're still having that seizure.
They're trying to talk to you. They're trying to shake you. They're trying to do whatever they can to try to get you to respond. You can't. They put you on a stretcher in the ambulance and take you to the hospital. You get to the hospital. You're still having that seizure. Now, you have to think that's like 15, 20 minutes has gone by and then they give you something [snorts] or maybe it's just cuz you're at the hospital and you feel safe. I don't know, but it calms down. Sometimes they would give me a shot, but I don't know if the if it was the shot that calmed me down or if it was just I felt safe and it calmed down. I've never been able to figure that. So, what can what can actually trigger one of these episodes?
You know, what is it that's causing these? Because it's one of the biggest mysteries, right? You know, we're all all of us that have them, we don't know why because the medical doctors don't know why. Well, now they have an answer, guys. Emotional stress or anxiety. I had a lot of it. And especially if you had a head strokes, right? You're going blind.
You know, you're you can't move one side of your body. You're under a great deal of stress. That can cause it. Um physical illness or pain. If you're in a lot of pain, which I was, that can cause them. You know, I was working and I couldn't I had gotten so big. I was in so much pain all the time. I had all I could do to walk into the building from the drive uh from the parking area. I had to sit and then before I got to my office, I had to find a place to sit again. So, I had to go to work every single day about 45 minutes earlier so that I could try to get to work on time and punch in. But I had all this time that I had to stop. People say, "Touche, are you all right? Are you okay, girl?"
And I'd be at, yeah, I'm fine. I'm just here early. I'm just taking a little break before I have I never told them the truth that I can't walk this far anymore. I'm in too much pain. I kept my pain a secret from everybody, even my husband. Um, past trauma, I had that too, guys. I had PTSD so severe between having a husband that was out to kill me to to being in an abusive relationship and then child abuse that lasted for 10 plus years, major life events or overwhelming situations. So, as you can see, [snorts] stress really causes it. And as I got older and as when COVID happened, it got really bad. You know, I stayed in the house. I I knew multiple friends were dying of CO and I just locked myself up.
I was so afraid to leave my house. I just kept growing bigger and bigger and fatter and fatter. I didn't dare to go anywhere. I ordered my groceries. Fear was my life. It was my life.
So uh and then it gets into how is P nees and that's um functional neurological disorder or um uh psychoggenic uh non-epileptic seizures. How is it diagnosed? The gold standard is evaluation by a neurologist using a video EEG monitoring which records both behavior and brain activity during an event. If seizurelike activity occurs without electrical changes seen in the epilepsy, PNES may be diagnosed. See, they should have diagnosed me while I was in the hospital and they didn't because they didn't know what what it was. It's something new. They just took it out. It's in your head. It's fake. Go away. Go home. That's what how they used to treat us back then. I felt like I was just being a weirdo. And it was like the biggest hidden secret in the world. I didn't want anyone to know that I was dealing with this. So, you know what I would do? I would tell people like at work because they knew I had a stroke. I just said they're just uh some symptoms left over from my stroke. I lied. You know, that's what I told him.
So um so the doctors also evaluate whether the neurological conditions because some people have both epilepsy and PNES psychoggenic non-epileptic seizures. You can have both but in my case I don't I don't have epilepsy. I do have the psychoggenic non-epileptic seizures. And that's what I used to call it non-epileptic because uh that's what they were. So I didn't really lie. It's just that I didn't realize that it was an actual thing. I just said it's non-epileptic. I've been tested for it.
It's non-epileptic.
And that's how I described it. Um current treatment education about the diagnosis.
I've been researching so I understand it. Cognitive behavioral therapy CBT is also recommended which has the strongest research support treatment of anxiety, depression, PTSD and other coexisting conditions when present um so being treated for anxiety which I was I I was given a little pill you know and they increased the pill. I mean it was my anxiety was really bad. didn't leave the house, didn't dare to take a shower, didn't dare to drive, didn't dare to go on elevators. Uh, I couldn't change a light bulb. I mean, the list is endless of all my fears. Didn't dare to go outside. Didn't dare to leave my driveway. Didn't dare to didn't dare to didn't dare. There was too much fear. I didn't dare to talk to people. I didn't like going shopping and looking at people. I shopped online. So getting treatment for anxiety in a way in a way my treatment was just going carnivore and all of you saying I remember Mason saying to me one day Barbar just say hello when someone walks by you just say hello cuz I didn't even get to look at them in the eye. I just ignored them. I turned my head and she said just say hello and I'll always remember that because why didn't I think of that? Instead, all I had was fear and looked away. So, I started doing that. I would just look at him and say, "Hello, hi. How you doing?" you know, and slowly I got past the anxiety of just talking to strangers, to people.
Um, learning stress management and the nervous system regulation techniques, breathing exercises, all that type of stuff. Um, I've been doing some of those.
Um, and sometimes I'll just sit there, close my eyes, relax, and I start doing, um, h I forget his name. [snorts] Um, DC, um, DC rebuilding. He's got a channel.
He does some breathing exercises.
Sometimes I'll just sit in my chair and just do breathing exercises to relax. Um and then it gets into another treatment is physical and occupational and speech therapy when functional systems affect movement or communication which it did.
Mine your anxiety is so high you don't talk but see I had all of you guys to help me through all this this past year building healthy sleep exercise and self-care routines and that's also what I've been doing. I have been sleeping better. I I do have a movement program where I come out and I walk. You know, I've been doing a lot of this without even realizing it, guys. I've been treating myself.
Anti-seizure medications do not treat um psychoggenic non-epileptic seizures.
So, if you're taking any of those, most likely they think you they're treating you for epilepsy or you might have it. I know when I left the hospital, they they gave me um some epileptic medication. I can't remember now the names of them because it was so long ago, but the uh the neur uh the neurology the neur neurologist said, "Yeah, you don't need to take those anymore. You know that you don't have epilepsy." So, I just stopped taking it. And it says, "Can people improve?" I say yes, cuz mine has. I haven't had one, guys, in over a year.
And for the last like 12 years of my life before I went carnivore, I was having them at least at least one or two a week, you know, some some days even more. I didn't realize it was all because of I actually thought I was losing my mind. I really did. Um, can people improve? Yes. Many people experience fewer episodes or complete remission with appropriate treatment and support.
Recovery is different for everyone. But understanding that the condition is real is the is the big part, right? It is real, guys. It is real.
So um how common [snorts] is you know PNAS uh psychoggenic non-epileptic seizures you know it says here that approximately 20 to 30% of the patients referred to epileptic uh centers for seizures are not responsive to epileptic medication, thus having this disorder.
And yes, it can be improved, guys. It can even go into remission.
Um, 10 years ago, it says here the biggest change in this condition. Um, 10 years ago, many patients were told their seizures were not real. And that's what I was told. They were not real. Today however special specialists recognize that functional seizures are genuine involuntary medical events that deserve compassion and appropriate treatment. So there you go guys, it is real what is happening to you. If you have these seizures, they are real. Don't let the medical the medical community tell you that they're not real.
How dare they? They are part of so much in your life. Anxiety, PTSD, post-traumatic stress disorder. It's part of uh mental health. It's part of depression.
It's part of anxiety. It's part of having a bad childhood, you know, and it's it's it's part of being abused.
It's it can happen, you know. It's not just, oh, you don't have a high temperature, so it's not that kind of a seizure. No, this is real. This is when you've been diagnosed with severe anxiety and depression. This can be one of the symptoms to it. So, you need to take care of your mental health. And I know carnivore has given me that help.
So that's what I wanted to discuss today. That it is real. I'm not crazy.
And those of you that are suffering with this too, you are not crazy either. It is real. It is very real.
Um I I thought I was crazy all these years. I didn't understand it.
There was times I would lay in bed and I'd have one and I couldn't move. I couldn't move. I couldn't get up. I couldn't say, "Someone help me." I was stuck like a statue in my bed. I couldn't get up for a good half hour.
You know how scary that is? And you're like, you're laying there thinking th this is another kind. It's not It's a seizure, but it's it's different. It's just you can't move. You know, you can't move. They call it a phantom seizure.
You just can't move. I had those, too.
And I thought there was times I thought, "Oh my god, I just died. I'm dead, you know." And I'd be so scared because I couldn't move. You know, I could not move.
Yeah. It's all part of your trauma, guys. And so many of us So many of us along this journey are realizing [snorts] Yeah. My my life is changing. My life is improving.
Yeah, it's real. Our seizures, guys, are real.
I haven't had one for over a year since going carnivore, but those of you that still have them, they are real, guys.
They are real.
And uh you can look it up. It's real.
Neurologists say they're real. They're real.
Um and it's not a magic pill that can help you overcome these. So what it is is working on your anxiety. For many of us, severe anxiety, guys, is real. It is real.
Believe me, I've lived it for so many years. It's real. And this is just one of the symptoms that go along with trauma, with anxiety. So many of us, you know, have been dealing with it since before CO or since CO. It's all part of our mental health. And eating carnivore helps the brain. It helps heal the brain, thus helping with this kind of thing. That's why I so believe that for so many of us, car the carnivore way helps heal not just our not just our physical body, you know, where you're overweight or dealing with cancer. It's also our mental health, it's also helps us spiritually. It helps all of it, every single bit of it. And uh I really hope you guys all stop telling yourself that this condition is fake. There's no cure for it. It doesn't exist. It does exist. Know that. Believe it. It is real.
And I suffered for so many years thinking it wasn't real. It's just in my head. Why? Why is it I'm having one now?
And I'm trying to tell myself in my mind to stop. Stop. Don't do this. And I couldn't stop it all along. It was real. It was real.
[snorts] It's like your brain saying too much, too much, too much. Let's shut down and restart. That's what's happening. It's too much, too much, too much. Shut down. Let's restart.
That's basically what's happening.
Your your mind can only take so much pain, can only take so much anxiety before it decides, all right, we've had enough. And this is the result of it.
You know, the psychoggenic non-epileptic seizure disorder. It's real. It's real.
And I am going to go inside cuz suddenly it got very very dark and I think it's going to storm at any moment.
[snorts] Yeah, it's gotten really bad overhead.
It's It's like it's like 8:00 in the evening and it's two. So, [snorts] on that note, guys, thank you for listening to this old lady talk about something that most of you probably don't want to know, don't have it, but there is a few of you out there that do. And it's very important that they hear this message.
And for you that don't have this, accept the knowledge of it, understand it, that it's real, and let someone that is having this problem know that, hey, don't listen to the doctors.
It is a real thing. Look it up. They're calling it PNES, psychoggenic non-epileptic seizure disorders.
It's real. [snorts] And on that note, I'm going to say, um, goodbye, guys. Um, be kind to yourself. Be kind to others.
Uh, love on your pets. I'm going to get them out before it rains. Love on your pets. Um, consider adopting. Consider rescuing.
And I hope to see you around, guys. I hope to see you around. On that note, I'm gonna say see you later.
Bye bye. Three, two, one. Beep. Look at that. My hobby let him out before I was just going to let him out because the storm's going to hit.
>> I told I was out front looking for you.
>> Yeah, >> I'm thinking I don't know.
>> Yeah, I'm glad I just walked to the corner cuz I would be like halfway around the block freaking out thinking I got to hurry up and get in the house.
So, on that note, guys, I got to go.
Three, two, one, beep.
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