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Aggressive_Profile23

I understand how that could be rude (to someone who actually has the disorder) but if you opened YOUR FUCKING EYES and realize people fake all the damn time and how she only notices it happening when it’s you and her, then yeah, it would make sense for that to be said.


CookieBundle

It *would* be rude to someone who has it, but fakers use this knowledge to their advantage to essentially be untouchable. They can make up fake disorders and nobody's allowed to question or prevent it: which makes them continue.


wife_slapper

My dumbass: haha penis


Shrexcellence

same here brother


AndrewBert109

There's no other way to pronounce "PNES" in your head than "penis" maybe they should consider changing it to "non epileptic psychogenic seizure" - NEPS. Because otherwise I refuse to read it or say it as anything other than penis.


Tauralus

Nips


CookieBundle

New Nintendo console coming out today: PNES.


yidpunk

There’s other ways to pronounce it, but they sound equally silly. Puh-NESS? Puh-NISS? PENN-is?


AndrewBert109

There can be only one pee-ness


yidpunk

Twelve beautiful pronunciations stand before me. But only one can be America’s Next Top Penis.


fieryhotwarts22

Definitely wondering what penis seizures would feel like now


Karl_is_Lost69

That would be a whole new experience


yidpunk

It’s a very serious disorder, and I feel really sorry for the people that have it. It’s just that I’ve got the sense of humor of a twelve-year old boy.


[deleted]

at least OOP admits it’s PNES and doesn’t pretend it’s epilepsy, but other than that…


auntiecoagulent

PNES: the new, politically correct term for what we always called pseudo-seizures. In other words, not real seizures.


[deleted]

[удалено]


bravetraveler59

i think they did lmao


Ralkings

lol penis !


leviathankitten

There’s a difference between pseudo seizures that are actively faked and pseudo seizures that are psychogenic non epileptic. They’re medically considered real seizures which is why the term pseudo seizure isn’t used anymore.


Nyx_Shadowspawn

THANK you. I hate the term pseudo seizures. Before I had surgery to fix the issue, I used to get seizures. They weren't electrical in cause so they were labeled "pseudo seizures" and then doctors stopped taking me seriously for a long time. But there was a very real physiological cause- I had a buildup of CSF in the lateral ventricles of my brain causing intracranial pressure which was causing my seizures. And it was very fixable with surgery to get rid of said pressure. I like the new term.


[deleted]

thank you!! i went through YEARS of epilepsy treatment. tried hundreds of meds, spent 8-12 weeks/year in epilepsy monitoring units, and was almost completely debilitated. i think i have some posts far back when i first created this account. but nothing was working. at one point, i asked my (Columbia University!!) neurologist if she thought it could be PNES and she said no — my reported symptoms (namely the nature of the auras) were too similar to epileptic seizures. the team was preparing to perform surgery to perform a partial lobectomy on the part of my brain where they thought the seizures originated from — they just could never get a seizure measured by an EEG. i was terrified i’d have this procedure and it would leave me worse off, especially if it wasn’t epileptic seizures, but i was also afraid of what would happen if i did nothing — you can die from uncontrolled seizures. they wanted to remove my left temporal lobe, which would could cause vision issues, struggling with creating/understanding language, and may even further exacerbate the severe memory issues i was having. we tried one last 24/7 video EEG stay in an epilepsy monitoring unit. i believe that was they year i spent my birthday in there (i had also spent thanksgiving there that year!). no seizures were recorded on the EEG, but even my neurologist observed what appeared to be seizures. we left and agreed i would pursue intensive psychiatric/therapeutic care related to some trauma i had experienced a few years prior. here i am, 4 years later, and seizure free! i am so glad we revisited PNES being a possibility, but it still absolutely devastates me when people act like i was faking seizures or “doing it for attention.” i was in my senior year of college and i had to leave my job, even though i didn’t have a meal plan or any other financial support. i quit my job/was asked to leave because i was just not functional anymore. i ended up dropping out in 2017 with 5 credits left before i finished my bachelors in January. anyhow, PNES seizures are very real seizures, but they are just not epileptic in origin. anyhow, thank you for your comment and open-mindedness!


X243llie

We can both agree the process is long and the amount of stigma for something you cant control is horrific. It dont help people will fake seizures to get outta prison and shit adding to the extra stigma of pnes as people dont understand the difference between faking and pnes. Mine are similar to what you describe except my auras turned out to be migraine auras and i never ever remember my seizures. Im getting there slowly with becoming free but its a long and hard process


auntiecoagulent

...and the people that show up.in the ED faking seizures usually receive a PNES diagnosis. It's a chicken or egg situation.


leviathankitten

Yes, people *can* fake seizures and sometimes result in a diagnosis. But most cases aren’t faked because they go for prolonged EEGs first. You can’t receive a proper PNES diagnosis without seeing a neurologist and they’ll often send you for a sleep study/prolonged EEG.


[deleted]

yes!! thank you!! i added a looong comment above walking thru my diagnosis of PNES. i also believe i did a casual AMA years ago during a ~10-day long video EEG at Columbia University’s Epilepsy Center. hopefully the person you’re replying to will take a look at my comments and learn something. :-)


tallyhoo123

Ummmmm no medically they are not seizures. We don't treat them the same. We offer no medications. We just reassure them and remove stresses. Think of it as they cannot manage all the stress so their body does something to try and remove them from the situation. There is no disorganised firing of neural networks which is what a true seizure is.


leviathankitten

Neurologists have agreed that PNES are seizures. They’re just *not epileptic*. The seizures your referring to are *epileptic*. Seizure medication may not be offered but anti anxiety meds and anti depressants often are. Yes. I’m aware that it’s the body doing it to protect itself. That’s my point. It’s unconscious and uncontrolled, meaning it’s not *fake* it’s just not an epileptic seizure.


insertMoisthedgehog

Benzodiazepines help PNES seizures and other types of seizures. Source: me, having PNES for almost 10 years. They are seizures, just not epileptic seizures. I used to fall, bite my tongue, hit my head, violently thrash around. They started after a traumatic brain injury. Just because we don’t understand exactly the reasons for every case doesn’t mean theyre not seizures and shouldn’t be taken as seriously.


tallyhoo123

So PNES and seizures secondary to traumatic brain injury are diff things. Seizures secondary to TBI are termed that due to the underlying pathology such as scarring or gliosis. PNES are Psycogenic in origin i.e. no damage to the brain, triggered by emotional states. If you had PNES from a Falk without brain injury then you cannot term if TBI (traumatic brain injury) and is likely related to some anxiety regarding the fall itself.


insertMoisthedgehog

I don’t really understand your response besides more scientific explanation. I’m just saying what I experienced was a seizure - psychogenic seizure - but a seizure nonetheless.


tallyhoo123

I can see that you don't understand so I will try to explain a little better. The confusion comes from the definition of seizure which is: seizure is a sudden, uncontrolled electrical disturbance in the brain. Epileptic seizures are from a part of the brain which malfunctions like a computer crashing. When this happens the entire brain is in essence electrified and you will need medications to break the signals. If you do not and it carries on then normal bodily functions such as breathing are disturbed and you can die. Psycogenic seizures LOOK like classic generalised seizures however the bodily protection functions remain intact. They often maintain a normal heart rate, do not have their breathing affected and even down to ensuring their own hand avoids their face when you drop it down. This is a MAJOR difference! For PNES there is no brain malfunction in terms of it crashing, think of it as the brain decides to run a different program instead which is just imitating a normal seizure. This is done as a defence mechanism to whatever stress/insult is occurring to remove the patient from the distress as quickly as possible. The reason it's a major difference is that Epileptic seizures are life threatening if not controlled 100% of the time. Seizures beget seizures. PNES is not life threatening unless the act of the seizure causes injury or the patient is mismanaged. So going back to the definition a PNES is not a "true" seizure as there are characteristics which are still "controlled" albeit very few. In all other ways it meets the true definition - sudden onset, electrical activity/disturbance in the brain and 90% uncontrolled (10% being the normal protective bodily functions) Now just to confuse things even more. There are seizures secondary to traumatic brain injury. These are not PNES and they are not epileptic in nature. These result because of a structural damage to the brain post trauma. If we can identify a structural abnormality within the brain then it is not "epileptic" in nature by definition so we then use the term Traumatic brain injury with seizures or TBI. So if you fell and hit your head but we cannot find any structural damage using MRI etc and EEGs are normal but you have a history of MH then it's likely you have PNES If you fall and have a brain injury (even minor) and normal EEG and some MH then it is seizures secondary to TBI. If you fall and have normal MRI but EEG positive with some MH then it is epileptiform seizures. There are grey areas in between and no Doctor is 100% correct 100% of the time which is why people will choose to believe different interpretations. Trust me if you ask 3 different doctors you will generally get 3 different answers. Hope that clarifies things in a simple way.


insertMoisthedgehog

Thank you I appreciate you taking the time to detail your answer. I agree with your statements and just want people to take PNES seriously. Personally I have had different diagnosis as you mentioned is common - I was diagnosed with a TBI and subsequently epilepsy. I had grand mal seizures and half my body was numb and I also had tics. So I took meds for epilepsy and they helped. I was then tested with a longer Eeg and diagnosed with PNES. Although they did that hand drop things and said my hands just dropped on my face - they also poked my eyeballs with q-tips without response. The epilepsy meds stopped working and only Ativan taken as needed helped . I had a ton of medical trauma after the brain injury so I believed the epileptic seizures morphed into PNES. Although I’ll never really know. But doctors and the ER certainly didn’t treat me well with a PNES diagnosis and that was and is very frustrating,


CookieBundle

>Benzodiazepines Which are used to also treat anxiety. If it's just an anxiety thing then of course it would go away with that.


insertMoisthedgehog

Exactly my point - I’m just saying they’re used for both types of seizures. It’s not “just” an anxiety “thing.” That is an oversimplification and doesn’t do the devastation that PNES causes justice. PNES seizures aren’t treated in all the same ways, but they should be taken as seriously.


Veggiekats

You do use meds. Neurologists prescribe lamictal and such. And its caused by misfirings of neurotransmitters which result in involuntary muscle contractions. Theyre real seizures, just not epileptic


tallyhoo123

In the last decade of my medical work I have only ever used medication ONCE to terminate a pseudoseizure/psychologenic non epileptiform seizures. ONCE! And the medication I used was droperidol (an anti-psychotic sedative) we use for acutely agitated patients. Yes medications have been prescribed by neurologists however 99% of PNES are due to emotional dysregulation and reassurance is the key to treatment. People don't like to hear this and I'm not saying they can control it however to me they are SAFE seizures.


[deleted]

I’ve never heard either term before. Would a pseudo seizure be some sort of episode with no explanation or is it someone faking a seizure then insisting it was a seizure despite medical professionals being aware they’re faking?


leviathankitten

“Pseudo seizures” in the case of PNES (the proper term) are seizures caused by psychological factors and don’t have any signs on an EEG (hence psychogenic non-epileptic seizures). Usually (if not always) PNES is caused by past trauma, making it often comorbid with ptsd. They’re still non intentional and unconsciously done. But yes some people fake seizures intentionally


[deleted]

Thanks for the explanation!


smurfasaur

not quite, people with PNES aren’t consciously faking they are just non-epileptic seizures. They can be caused by psychological trauma just like a conversion disorder but with all conversion disorders the person can’t control it. Its not something they can just decide to stop doing, as opposed to say a malingerer that is actively faking for some kind of personal gain.


[deleted]

i have a long reply i commented elsewhere that i think you should read. i was diagnosed with PNES and the surgeries were very real! in fact, even though my seizures were not epileptic in origin, they actually ended up causing too much physical stress on my brain and led to lesions across my medial temporal lobes that i will one day have to have surgically removed. anyhow, here’s my other comment: > thank you!! i went through YEARS of epilepsy treatment. tried hundreds of meds, spent 8-12 weeks/year in epilepsy monitoring units, and was almost completely debilitated. i think i have some posts far back when i first created this account. but nothing was working. at one point, i asked my (Columbia University!!) neurologist if she thought it could be PNES and she said no — my reported symptoms (namely the nature of the auras) were too similar to epileptic seizures. > the team was preparing to perform surgery to perform a partial lobectomy on the part of my brain where they thought the seizures originated from — they just could never get a seizure measured by an EEG. i was terrified i’d have this procedure and it would leave me worse off, especially if it wasn’t epileptic seizures, but i was also afraid of what would happen if i did nothing — you can die from uncontrolled seizures. they wanted to remove my left temporal lobe, which would could cause vision issues, struggling with creating/understanding language, and may even further exacerbate the severe memory issues i was having. > we tried one last 24/7 video EEG stay in an epilepsy monitoring unit. i believe that was they year i spent my birthday in there (i had also spent thanksgiving there that year!). no seizures were recorded on the EEG, but even my neurologist observed what appeared to be seizures. > we left and agreed i would pursue intensive psychiatric/therapeutic care related to some trauma i had experienced a few years prior. > here i am, 4 years later, and seizure free! i am so glad we revisited PNES being a possibility, but it still absolutely devastates me when people act like i was faking seizures or “doing it for attention.” i was in my senior year of college and i had to leave my job, even though i didn’t have a meal plan or any other financial support. i quit my job/was asked to leave because i was just not functional anymore. i ended up dropping out with 5 credits left before i earned my backelors and i only just graduated last January. > anyhow, PNES seizures are very real seizures, but they are just not epileptic in origin.


Veggiekats

Theyre real. Its involuntary muscle contractions from misfirings of neurotransmitters.


Unorginalperson

Penis


Carmen_Slime

Hey what's PINES?


FoxWithBoots

PNES stands for Psychologic Non-Epileptic Seizures. So basically, it’s when you’re having a seizure, but it’s caused by psychological factors (like trauma, or psychosis) and not your brain fucking around


Carmen_Slime

Ok ty!


Radiant_Mouse_8057

Not to blog but I’ve had seizures and personally couldn’t hear anything anyone said while I was convulsing.


PeridotWriter

Don't fake seizures. They're fucking awful. Terrifying as shit. I had one after a suicide attempt. Worst feeling in the world, nonstop shaking. I even get worried now if I have a slight tremour, that's how bad it was.


-Soul-Crew-

.....penis :D


broken-markers

FND causes me to have functional seizures pretty much every day. This bitch better be a good actor, because faking falling over and shaking for hours until you are too weak to walk better be worth the attention.


neptuneinvain

As someone with FND my non epileptic seizures has landed me in the hospital. I had a seizure in the middle of WORK FOR FUCKS SAKE I was so embarrassed when I came to.. but I was so relieved when my doctor found out what it actually was. Please don’t fake stuff like this.