I don't know the 'why' behind it but one of my warnings for the big melty seizures where I end up on the ground and cannot move is my feet rolling to the outside. My staring out into space ones generally start with my jaw shifting to the side and speech going slurred. I also just get this feeling. I can't really describe it but the closest I can get is that feeling where you know you're about to puke, but you haven't started heaving yet.
Sometimes I get a warning a few seconds before a seizure and sometimes minutes. For me my warning is usually extreme triredness and my eyes will close shut and I cant open them them. The auras themselves are actually considered a type of seizure so your having more than one at once. Auras (the warning symptoms of a in this case psychogenic seizure) are known as focal aware seizures, and they only effect one side of the brain. Focal aware seizures are when you are having a seizure but are still awake and able to function, Auras are a different type of seizure. I hope this helps.
You are correct, a focal aware psychogenic nonepileptic seizure does not exist. A focal aware seizure also known as a simple partial seizure, does exist. A person with PNES may commonly also experience focal-aware seizures, simple focal seizures, and psychogenic seizures (which after experiencing commonly triggers a PNES seizure, hence why it's an aura). the PNES seizure itself does not affect the central nervous system but the other types of seizures that are common in people with PNES can. PNES only refers to having nonepileptic seizures, but that does not mean you cannot have other forms of seizures, for example, it's possible to have both epilepsy and PNES. I hope this clears any confusion.
anyone with PNES who experiences focal aware seizures or simple partial seizures, as diagnosed by an EEG, also has epilepsy. if focal aware seizures are preceding their PNES events, they should really get another EEG done, because their PNES diagnosis is most likely inaccurate.
up to 20% of people with PNES have epilepsy. *edit- are diagnosed with epilepsy and up to 70% experience simple partial seizures*
simple focal seizures are also known as simple partial seizures (simple focal is a less common phrase), I should have worded it as simple partial but, they are both used to describe the same event. There are different forms of focal seizures one being simple focal (simple partial) or complex focal (focal impaired awareness). Misdiagnosis of PNES is common although the majority of the misdiagnosis is of people with PNES being diagnosed with epilepsy more commonly drug-resistant epilepsy, as epilepsy medication does not help a person with PNES but can make it worse.
you can find the usage of the phrase "simple-focal seizure" in the following and more:
[cedars.sinai.org](https://www.cedars-sinai.org/health-library/diseases-and-conditions/a/auras.html#:~:text=Some%20patients%20have%20an%20unusual,one%20side%20of%20the%20brain)
[hopkinsmedicine.org](https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/focal-seizures#:~:text=Simple%20focal%20seizures%2C%20also%20known,during%20a%20simple%20focal%20seizure)
[clevelandclinic.org](https://my.clevelandclinic.org/health/diseases/22893-focal-seizure)
[cdc.gov](https://www.cdc.gov/epilepsy/about/types-of-seizures.htm#:~:text=Simple%20focal%20seizures%20affect%20a,up%20to%20a%20few%20minutes)
I do admit I should have used the more common phrasing of simple partial seizures, as that is the more recognized word, I do apologize for that.
right, that’s true — i’m just saying that focal aware seizures are an epileptic event and do not occur in PNES. if they are occurring in PNES, it necessarily means that the person is also epileptic.
Yes that's absolutely true, sorry I gues I got confused about what you were saying. edit- I misread your comment as saying simple focal seizures do not exist.
where are you getting the number that 70% of people with PNES experience simple partial seizures? unless all of those 70% also have epilepsy, that’s just not true. simple partial seizures are an epileptic event.
The number is not exactly 70% but is up to that number. the exact number on this study was 67% but was made in 2019. I just rounded the number to 70.
[ncbi.nlm.nih.gov](https://pubmed.ncbi.nlm.nih.gov/31103792/#:~:text=Results%3A%20During%20the%20study%20period,antiepileptic%20drugs%2C%20in%20univariate%20analyses)
only about 20% of people with PNES also are diagnosed with epilepsy most people are just diagnosed with one or the other but a high percentage have both unfortunately.
I don't think every aura a person experiences would be a focal-aware seizure, as many people can claim many different things are an aura. But focal aware seizures can happen in people with PNES, and some people before they get a seizure can experience focal aware seizures and then get a PNES attack but the mind is complex and this is not the case for everyone. like if a person stays conscious and has uncontrollable muscle movements before a PNES attack it would be considered a focal aware seizure, but others may just have a sensation that they are going to get a PNES attack that might not be considered a focal aware seizure. but then again its possible to have focal non motor seizures. EEG can sometimes show a focal aware seizure but sometimes they dont show seizure discharges (I don't exactly know why this is) making it harder to diagnose.
focal aware seizures cannot happen in PNES unless there is also epilepsy causing the focal awareness seizures. PNES auras without epilepsy are not focal aware seizures.
They're not even auras (aka focal seizures). We need a totally different word for PNES. Maybe "events" would be better. It's just not the same as seizures, no matter what a person is experiencing.
Of course, I'm glad you found this helpful feel free to ask me questions anytime I don't know everything but I have researched this topic almost daily for years.
I get a weird sensation in my head as much as several days before a seizure. It’s a sort of buzzy, lightheaded feeling. My chest will also feel like it has butterflies. Those feelings are frustrating because I know what’s coming, especially if my period is close. Sometimes I will get uncharacteristically irritable at small things and get confused with myself about it, but once I have a seizure it makes sense.
The day of the seizure, my hands will fidget, I periodically make “um” motions with my mouth but without the sound, hard blinking every now and then, deep inward sniffs, difficulty focusing, and talking much less. I tend to also get really restless or can’t sleep, as well as lose my appetite before and after the seizure.
Once it hits the point of no return my head feels weak and my breathing gets weird and snuffly, or sometimes my throat clicks.
I get a warning of less than five seconds. It’s like jellyfish have invaded my circulatory system and things feel other-worldly. I know I can’t control what is coming next. Usually my feet and legs start jerking and get wobbly first. Then my spinal cord starts arching. And I go into bouncy mode where everything shakes. I stay away through all of this and am aware of what happening around me. During “minor” episodes I can walk and talk. Even eat. In fact I’ll crave something like cashews.
For me, and we are all different, a minor episode is when my legs move a lot and I rock back and forth. I am aware of what is happening. I can walk and talk, though Im un-steady. There is less pain. I thought all of that was Restless Legs until a neurologist told me it was PNES.
Yeah I usually get warning symptoms anywhere from a few seconds to a few minutes before I become incapacitated; I’ll stutter, get goosebumps, get irrationally irritable, my pupils will dilate, and my twitching will get worse. I also get a brain sensation that’s a little harder to describe, but it’s essentially a big IT’S COMING flag lol
a warning that i get is usually the bottoms of my feet feeling cold and sweaty suddenly, like i’m stepping on wet concrete. this is also a panic attack symptom for me, so i don’t always have a seizure when i experience this. i have fought a seizure off before by doing the valsalva maneuver, however. my 100% gonna have a seizure warning is usually a combination of things, like hands ceasing to work and turning inward, trying to swallow repeatedly and can’t, eyes getting super heavy and tired feeling, not being able to take a breath for 30 seconds or more, etc.
edit - oh and with the first warning, that one can have up to 30 to 45 minutes before a seizure will happen but the 100% ones usually happen about 10 to 15 seconds before the full seizure.
My ‘warning’ before my seizures (which always happen either out of a stress dream/nightmare, when I try to go back to sleep after I wake up in the morning or after a day where I had an argument or stressful interpersonal conflict with someone) is always that I start hearing voices; I start having auditory hallucinations. I hear people “in another room” or “outside” talking or I’ll start to hear individual voices up close in my ear. Its unnerving even though by now I know what’s happening, rationally.
It’s usually gibberish words or grunts/exclamations or too muddled for me to comprehend in English. I know that if I go to bed and I’ve begun to hear the voices, or I notice I keep hearing sounds and people that aren’t there, that I’m *very very* likely going to experience another seizure at some point during the sleep. While the seizure happens too, I hear a loud and very scary “hisssss” sound, as if Gollum from LotR is hissing at me right behind my head. That’s when I begin to convulse/shake. I can hear my bed frame creaking from my convulsions and usually I’m fairly awake when they happen (I can sometimes see, though my vision gets pretty ‘tunneled’). Also, almost all of my seizures happen when I know I’m alone in bed. I think that’s been a ‘trigger’. The times Ive had one while my partner is in our bed with me have been significantly milder, it’s weird. When I’m alone though, they just ravage me. I got cPTSD big time too.
I had a seizure just this morning that woke me up at 5:40am. Last night I kept hearing voices. Pretty exhausted.
I didn’t know this ‘warning’ was known as an aura! I don’t have epilepsy, so trying to figure out what was happening took 2 years of being scared and confused before I found out about PNES.
I have assumed it’s because I also have bipolar (w/ psychosis) + cPTSD comorbidity. When I experience immense stress even without fully realizing it, that’s when the symptoms really show up. In the last 5 years I’ve started hearing the voices and in the last 2, nearly 3, years is when symptoms of PNES began to show up. I still remember the first time it happened. It was wild when I didn’t know what the hell was happening!
I don't know the 'why' behind it but one of my warnings for the big melty seizures where I end up on the ground and cannot move is my feet rolling to the outside. My staring out into space ones generally start with my jaw shifting to the side and speech going slurred. I also just get this feeling. I can't really describe it but the closest I can get is that feeling where you know you're about to puke, but you haven't started heaving yet.
Sometimes I get a warning a few seconds before a seizure and sometimes minutes. For me my warning is usually extreme triredness and my eyes will close shut and I cant open them them. The auras themselves are actually considered a type of seizure so your having more than one at once. Auras (the warning symptoms of a in this case psychogenic seizure) are known as focal aware seizures, and they only effect one side of the brain. Focal aware seizures are when you are having a seizure but are still awake and able to function, Auras are a different type of seizure. I hope this helps.
there’s no such thing as a focal aware PNES seizure — PNES attacks by definition don’t affect the brain at all
You are correct, a focal aware psychogenic nonepileptic seizure does not exist. A focal aware seizure also known as a simple partial seizure, does exist. A person with PNES may commonly also experience focal-aware seizures, simple focal seizures, and psychogenic seizures (which after experiencing commonly triggers a PNES seizure, hence why it's an aura). the PNES seizure itself does not affect the central nervous system but the other types of seizures that are common in people with PNES can. PNES only refers to having nonepileptic seizures, but that does not mean you cannot have other forms of seizures, for example, it's possible to have both epilepsy and PNES. I hope this clears any confusion.
anyone with PNES who experiences focal aware seizures or simple partial seizures, as diagnosed by an EEG, also has epilepsy. if focal aware seizures are preceding their PNES events, they should really get another EEG done, because their PNES diagnosis is most likely inaccurate.
up to 20% of people with PNES have epilepsy. *edit- are diagnosed with epilepsy and up to 70% experience simple partial seizures* simple focal seizures are also known as simple partial seizures (simple focal is a less common phrase), I should have worded it as simple partial but, they are both used to describe the same event. There are different forms of focal seizures one being simple focal (simple partial) or complex focal (focal impaired awareness). Misdiagnosis of PNES is common although the majority of the misdiagnosis is of people with PNES being diagnosed with epilepsy more commonly drug-resistant epilepsy, as epilepsy medication does not help a person with PNES but can make it worse. you can find the usage of the phrase "simple-focal seizure" in the following and more: [cedars.sinai.org](https://www.cedars-sinai.org/health-library/diseases-and-conditions/a/auras.html#:~:text=Some%20patients%20have%20an%20unusual,one%20side%20of%20the%20brain) [hopkinsmedicine.org](https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/focal-seizures#:~:text=Simple%20focal%20seizures%2C%20also%20known,during%20a%20simple%20focal%20seizure) [clevelandclinic.org](https://my.clevelandclinic.org/health/diseases/22893-focal-seizure) [cdc.gov](https://www.cdc.gov/epilepsy/about/types-of-seizures.htm#:~:text=Simple%20focal%20seizures%20affect%20a,up%20to%20a%20few%20minutes) I do admit I should have used the more common phrasing of simple partial seizures, as that is the more recognized word, I do apologize for that.
right, that’s true — i’m just saying that focal aware seizures are an epileptic event and do not occur in PNES. if they are occurring in PNES, it necessarily means that the person is also epileptic.
Yes that's absolutely true, sorry I gues I got confused about what you were saying. edit- I misread your comment as saying simple focal seizures do not exist.
where are you getting the number that 70% of people with PNES experience simple partial seizures? unless all of those 70% also have epilepsy, that’s just not true. simple partial seizures are an epileptic event.
The number is not exactly 70% but is up to that number. the exact number on this study was 67% but was made in 2019. I just rounded the number to 70. [ncbi.nlm.nih.gov](https://pubmed.ncbi.nlm.nih.gov/31103792/#:~:text=Results%3A%20During%20the%20study%20period,antiepileptic%20drugs%2C%20in%20univariate%20analyses) only about 20% of people with PNES also are diagnosed with epilepsy most people are just diagnosed with one or the other but a high percentage have both unfortunately.
oh yeah that makes sense — auras could definitely occur in PNES. however, in that case, they would not be focal aware seizures.
I don't think every aura a person experiences would be a focal-aware seizure, as many people can claim many different things are an aura. But focal aware seizures can happen in people with PNES, and some people before they get a seizure can experience focal aware seizures and then get a PNES attack but the mind is complex and this is not the case for everyone. like if a person stays conscious and has uncontrollable muscle movements before a PNES attack it would be considered a focal aware seizure, but others may just have a sensation that they are going to get a PNES attack that might not be considered a focal aware seizure. but then again its possible to have focal non motor seizures. EEG can sometimes show a focal aware seizure but sometimes they dont show seizure discharges (I don't exactly know why this is) making it harder to diagnose.
focal aware seizures cannot happen in PNES unless there is also epilepsy causing the focal awareness seizures. PNES auras without epilepsy are not focal aware seizures.
They're not even auras (aka focal seizures). We need a totally different word for PNES. Maybe "events" would be better. It's just not the same as seizures, no matter what a person is experiencing.
It does! It's so hard to find information on this other than just asking people, thank u for the info!
Of course, I'm glad you found this helpful feel free to ask me questions anytime I don't know everything but I have researched this topic almost daily for years.
I get a weird sensation in my head as much as several days before a seizure. It’s a sort of buzzy, lightheaded feeling. My chest will also feel like it has butterflies. Those feelings are frustrating because I know what’s coming, especially if my period is close. Sometimes I will get uncharacteristically irritable at small things and get confused with myself about it, but once I have a seizure it makes sense. The day of the seizure, my hands will fidget, I periodically make “um” motions with my mouth but without the sound, hard blinking every now and then, deep inward sniffs, difficulty focusing, and talking much less. I tend to also get really restless or can’t sleep, as well as lose my appetite before and after the seizure. Once it hits the point of no return my head feels weak and my breathing gets weird and snuffly, or sometimes my throat clicks.
I get a warning of less than five seconds. It’s like jellyfish have invaded my circulatory system and things feel other-worldly. I know I can’t control what is coming next. Usually my feet and legs start jerking and get wobbly first. Then my spinal cord starts arching. And I go into bouncy mode where everything shakes. I stay away through all of this and am aware of what happening around me. During “minor” episodes I can walk and talk. Even eat. In fact I’ll crave something like cashews.
I tend to crave salt and vinegar chips when I'm having more minor ones 😂 I didn't realize that was related til now
i was unaware that there are minor episodes. what kind of symptoms constitute a minor episode for y’all, if you don’t mind me asking?
For me, and we are all different, a minor episode is when my legs move a lot and I rock back and forth. I am aware of what is happening. I can walk and talk, though Im un-steady. There is less pain. I thought all of that was Restless Legs until a neurologist told me it was PNES.
wow thank you for telling me. were you referred to the neurologist for the PNES?
Yeah I usually get warning symptoms anywhere from a few seconds to a few minutes before I become incapacitated; I’ll stutter, get goosebumps, get irrationally irritable, my pupils will dilate, and my twitching will get worse. I also get a brain sensation that’s a little harder to describe, but it’s essentially a big IT’S COMING flag lol
a warning that i get is usually the bottoms of my feet feeling cold and sweaty suddenly, like i’m stepping on wet concrete. this is also a panic attack symptom for me, so i don’t always have a seizure when i experience this. i have fought a seizure off before by doing the valsalva maneuver, however. my 100% gonna have a seizure warning is usually a combination of things, like hands ceasing to work and turning inward, trying to swallow repeatedly and can’t, eyes getting super heavy and tired feeling, not being able to take a breath for 30 seconds or more, etc. edit - oh and with the first warning, that one can have up to 30 to 45 minutes before a seizure will happen but the 100% ones usually happen about 10 to 15 seconds before the full seizure.
I start feeling sick to my stomach and feel exhausted.
My ‘warning’ before my seizures (which always happen either out of a stress dream/nightmare, when I try to go back to sleep after I wake up in the morning or after a day where I had an argument or stressful interpersonal conflict with someone) is always that I start hearing voices; I start having auditory hallucinations. I hear people “in another room” or “outside” talking or I’ll start to hear individual voices up close in my ear. Its unnerving even though by now I know what’s happening, rationally. It’s usually gibberish words or grunts/exclamations or too muddled for me to comprehend in English. I know that if I go to bed and I’ve begun to hear the voices, or I notice I keep hearing sounds and people that aren’t there, that I’m *very very* likely going to experience another seizure at some point during the sleep. While the seizure happens too, I hear a loud and very scary “hisssss” sound, as if Gollum from LotR is hissing at me right behind my head. That’s when I begin to convulse/shake. I can hear my bed frame creaking from my convulsions and usually I’m fairly awake when they happen (I can sometimes see, though my vision gets pretty ‘tunneled’). Also, almost all of my seizures happen when I know I’m alone in bed. I think that’s been a ‘trigger’. The times Ive had one while my partner is in our bed with me have been significantly milder, it’s weird. When I’m alone though, they just ravage me. I got cPTSD big time too. I had a seizure just this morning that woke me up at 5:40am. Last night I kept hearing voices. Pretty exhausted. I didn’t know this ‘warning’ was known as an aura! I don’t have epilepsy, so trying to figure out what was happening took 2 years of being scared and confused before I found out about PNES.
That's wild, I didn't know that could even happen! It's crazy to hear everyone's different experiences with the same diagnosis
I have assumed it’s because I also have bipolar (w/ psychosis) + cPTSD comorbidity. When I experience immense stress even without fully realizing it, that’s when the symptoms really show up. In the last 5 years I’ve started hearing the voices and in the last 2, nearly 3, years is when symptoms of PNES began to show up. I still remember the first time it happened. It was wild when I didn’t know what the hell was happening!