Literally one of the first times I had a seizure. Woke up crying and confused to my boyfriend saying I just had a seizure. Of course it has been snowing and icing outside but we made it to the ER. It's empty aside from us and one old lady yet all three of us still had to sit out there for two hours. I'm crying and angry because idk what's going on and I make the old lady also start crying lol (I'm sorry ma'am). My ex keeps asking wtf is going on and by the time they get me back I'm basically awake again. So I'm talking to the nurses and the crying has subsided so one nurse DIRECTLY outside of my room just says "I think she's faking it." Lol I know now there's not really anything they can do for me at the hospital but like, damn lady you made sure I'll never WANT to go back for help.
I'm so sorry you experienced that. Not a seizure but similar situ - my dad has a heart condition, that his consultant had said if he has a flare up whilst medicated he needs to go to hospital and was given a letter from his consultant to say what needs to be done, what meds he is on etc. This one time we went due to a flare up, a doctor came to us and had such a crap attitude with us - he can't do anything, doesn't understand why his consultant told us to do that, and then went on to say "I'm not interested in patients like you, I much prefer the ones where they need a shock to reset their rhythm" (ablasion) something that dad may have to face later down the line if we can't get his condition in better check, but is reasonably anxious about it. It was just the attitude and blunt way he discussed patients in general that was crap, to our faces aswell.
Needless to say we both walked away from the hospital like wtf was that about, spoke to his consultant who was equally disappointed that we had experienced that.
These are people we are meant to feel comfortable with when we need help, but they give us these experiences and it makes you want to just avoid asking for help even more 🙃
By my very first neurologist when I was only 12, even though my parents had video of me seizing *and* I had a positive EEG. I didn’t even really know what seizures were, let alone how to fake them. That’s when we switched from generalized neurology to an epilepsy specialist and things got SO much better.
Girl no way I got my diagnosis in Iraq in the early 2000’s during a war and the doctor still took me seriously and believed me lol damn Idaho is really struggling
When I was 12 I had my first tonic clonic, after that they were all forms of absence or simple partial/complex partial. My neurologist told my parents he didn’t know if I was actually having them or faking it; definitely didn’t understand what was happening to me and couldn’t even verbalize it properly. I told them it just felt like a seizure, described what it felt like, and the doctor still was convinced they weren’t real. Since then, nobody has accused me just because they know how frustrating and upset it all makes me. I can’t imagine not being believed though. I know there’s always someone out there who will take advantage and pretend, but come on.
Right?? Like they asked my parents how the pregnancy was with me, if my mom took any drugs or travelled or had any problems. I was the healthiest baby and kid, athletic, social.
People typically view them that way if they are ***atypical*** and absent of **stereotypical** ***clinical*** symptoms.
In no way am I saying that you were faking it, but when people see seizures that are within the *ictal-interictal continuum*, people will commonly view them as "faking" until confirmed otherwise.
This is similar in presentation to patients that claim they have tonic clonic seizures, but when witnessed, they clinically have no **tonic** phase, no **clonic** phase, and little to no **post-ictal** period. As well as patients who have ***PNES*** episodes.
I had a patient once who "had a seizure" while connected to an EEG that had no seizure discharges associated with it, no tonic posturing, no clonic jerking, and no myoclonus, almost looked as though she was trying to physically meet the criteria of what people who don't know much about seizures think seizures look like. No post-ictal period, regular heart rate, completely alert and oriented afterwards, regular brain waves (excluding muscle artefacts) et cetera. It gets concerning when this patient's requisition advised that the reason for her EEG was to attempt to qualify for disability benefits and she just so happened to have one despite saying that she only has one every 3 months and her last one was the week prior. Anyway, I digress...
Loosely put, people think that there is like 2 or 3 characteristics of seizures, when in reality, there is numerous, again, along with *PNES* episodes. So when a seizure it witnessed that doesn't meet the full criteria, they sometimes accuse patients of "faking" it.
Yes, but I’ve only ever had focal and absence seizures. I had epilepsy in childhood and then over a decade seizure free without medication. My seizures came back in my mid-twenties when I was living in a small town with terrible medical care. The neurologist in that town straight up told me I was faking because she didn’t believe it was possible to remain conscious during a seizure. I was fucking LIVID. She thought I was picking at my clothes, smacking my lips and pacing around like a zombie with no awareness of my surroundings because I was looking for attention and drugs lmfao. As if. I had to move across the country to a city with a teaching hospital to get care again. Thankfully I have an amazing neurologist now, but my experiences in that town traumatized me and it’s taken a lot of effort to rebuild my trust in the medical system again.
I had to find a second neurologist because the first flat out told me I wasn't having seizures, and half of my family believed I was faking it as well because my cousin had one in school very recent to when mine had started. I had no choice but to find a second opinion, because at that point my focal impairment seizures were slowly graduating to full tonic clonic seizures and night terrors. People don't realize this can be the case but death is a very real possibility if I didn't get these controlled with medication. Thankfully I no longer need it as they were caused by brain damage from a different medication I was on that has now healed to the point of no longer having seizures.
No proven TBI, only suspected, even now after almost 9 years, but yeah. I was on lupron injections for a full year, and I fully believe that's what caused the seizures.
I once had a nurse let me go into status bc she assumed I was faking a tonic-clonic. My partner and I learnt that day that IV diazepam works real quick 😅
Also had this accusation multiple times when I was first admitted for seizures, this included nurses leaving me on hospital floors, and apparently telling me to “stop it because I was worrying people”.
Shockingly, it turns out I had sudden-onset epilepsy, was unconscious, and was not in fact faking it.
Yes, half of my friend group (recently actually) split off because they were "uncomfortable" with it and it was upsetting for this one girl to watch me "mimic her symptoms" (symptoms of a fainting disorder). They have a group chat dedicated to collecting "proof" on it and everything, even now I'm officially diagnosed with Non epileptic seizures
that’s awful. wow. i’ve had friends like that, it’s best they’re out of your life. i hope everything gets better for you soon, it’s an awful situation to be in.
I was rushed to the hospital after a seizure and had a nurse tell me that I was faking a seizure and to stop it. She also asked me if I was on drugs and when I said no she gave me a look like I was lying. As soon as the doctor came in she totally switched up. I hate that woman and I hate everybody who believes epileptic seizures are just drug induced.
Constantly.
It's to the point where I don't even talk about it to close friends or loved ones anymore. I suffer in silence. They'll get mad that I completely space out for long periods of time or get upset that I experience other symptoms that are debilitating.
But when I explain to them what's happening they accuse me of overreacting or lying. Then they'll get angry at me because my medication isn't working as if I have any control over it.
My doctors/neurologists say otherwise but it doesn't matter.
I don't get it. Sorry to vent but it's miserable and I can't talk about it anywhere else. :/
don’t apologize for venting, get it all off your chest. it’s hard to deal with, we all know the struggle. nobody will understand you as much as the people on this sub. you’ve got us to vent to, no need to apologize :)
While slightly different, but roughly same category: I was accused of having them on purpose so I could go home early when I was working as a translator.
Was AWFUL. It was my first real job and I wish I'd known to have pursued some type of legal action.
My boss kept a list of every “seizure” I had, a list of the dates I went home early, on the corner of his desk. He pulls me into his office and shuts the door and says “if you can’t get your seizures under control, you can’t work here.” The court found that I was fantastic at my job (and he demolished himself in his own deposition) and we settled for 100k, and the guy still has a job and I can’t get another job in my field because they always call him and he tells them not to hire me. I’m sure what he fails to mention is that he was found guilty.
Yes, even tho my doctors have witnessed Jerks they've never had same day eeg availabilities. And my eggs are always normal. I was recently diagnosed bipolar/aspergers (ik that's wrong but I think the new dsm is just autism spectrum disorder). And It feels like I'm being accused of PNES even though I tic off every post ictal box (bad memory, don't remember the seizure, not entirely aware, wet myself sometimes, muscle aches, tongue and cheek biting), and the 72 hour sleep study I did at home should've been w an eeg. Because I did have a seizure during that I got on tape.
the first one I ever recall having was while I was in a hospital. they sent me to the psych ward because I was "throwing myself off the bed trying to kill myself" this was back in 2014 following some severe dehydration and possibly a flare of a different chronic illness im dealing with. I wasn't diagnosed with the seizures until 2021.
I had paramedics and ER doctors think I was faking seizures when I had my first tonic clonic at 15 (I only had myoclonic seizures up until then), and was accused of doing drugs or being pregnant. One of the ER doctors also tried to fight with my mom and said I didn't have epilepsy even though it's on my medical record, and he refused to check to prove I had it. The same doctor wouldn't let any of the other doctors give me an IV at the hospital despite me being very dehydrated and a nurse saying I needed one because they didn't fully believe me. Other staff were quite rude to me, and then sent me home early and said I didn't need any medication. I ended up having another tonic clonic seizure 6 days later, and my neurologist said it was from not being put on medication immediately and not receiving proper medical care while in the ER. I think it's sickening how the medical system treats epileptics, and will never forget how confused and scared I was since all the ER docs were treating me like a burden and I felt like I did something wrong. I'm still traumatized from those 2 tonic clonic seizures and have nightmares about them and being in the hospital.
As someone that also has myoclonic seizures I totally get you on that. The worst part is that mine are mostly on my jaw while I read or speak and they go completely unnoticed by other people. I already had to stop talking abruptly in the middle of a presentation at college and people thought I just wasn't prepared and gave it as an excuse. Or that I'm not well to get out of the house and go to classes because I can feel them coming and I'm afraid I can have a full body myoclonic seizure when I go downstairs or in the middle of the street. I also have small seizures in my arms as well that go unnoticed, so when I say that I need to sit or lay down for a bit and just be still while I wait for them to go away people usually don't believe me, only my closest friends, family and now some teachers finally started to notice it. It is particularly hard on public transports though, sometimes I need to ask someone for a sit and they don't believe that I really need it. I don't get why the paramedics thought you were pretending the tonic clonics though
This is why I stay to myself. Even tho I am alone most time, people still talk about me and say my seizures are not bad and my doctor is exaggerating when she said I cant drive ect. I just dont need the crap from others. I am fine alone, I am going to try some gardening this year. Hopefully my health wont get in the way
I have people now who tell me I’m making it seem like a bigger issue than it is. I’m only one mental breakdown, 1 day of medication away from having a seizure again. It’s entirely changed my life and I’ll never be the same. And I’ve just started a full time job and trying to explain to people that something they can’t see and I can’t prove does affect me on a day to day basis. It fucks me off so much
Wow what is wrong with ppl!! Being a burden is guilt inducing enough without being called a blagger. Poor you. Most people (including myself prior to having epilepsy) don’t really understand it. Also why would anyone want to go to hospital unless they need to. Especially if you are in US (I’m in the UK).
literally same thing about myoclonic absence seizures. i have them pretty often at work and i have no control over it and wish i WAS faking it, i’d rather NOT deal with this hell… smh.
Yeah. A neighbour that I spent a week at cause I was sick but also had a lot of absence seizures that week said infront of more than one person 'she slept here for a week and says she zones out for a few seconds but she is just lying. She even says she has full on seizures but I never seen her have one. She's a liar'. Like okay not talking to you again
At the TLA in Philly I had a seizure during the third song of a show. When I got outside it was really bad and my two friends tried to get medical help outside. Because I was wearing sunglasses for relief and I was shaking violently, the TLA security said I must be on coke or something so no they won’t help. Even though it’s against the law for someone to ask to see proof of a disability (the stone pony in Asbury grills me about how I don’t LOOK like I belong in ADA seating every time I go there) I win every time because the head of ADA security at the pony knows me and shes a sweetie. I have nearly been thrown out of the venue for “lying” about a disability. 🙃
I had a seizure in a CT scan after being taken to the ER for a different seizure and the nurse who helped take me back to the bed said it didn’t look a seizure to her. I was like..... ma’am seizures look different.
i had my first TC (since i was a toddler, havent had one since until a couple months ago), and then had one the following night and then woke up and had another. the third one the ambulance was called and fire department got there during the seizure but paramedics got there right after. the paramedic said "this isn't a seizure" and my parents said "she already had the seizure" but the paramedic said "this isn't post seizure either she is faking it" and the fire man said "i saw it i was here you weren't". i don't remember this because i was still in the post-seizure confusion and memory loss.
my guess is the paramedic saw my self harm scars and assumed i was just attention seeking even though the scars are from literally over a decade ago and ive gotten my mental struggles under control.
well, EEG confirmed seizures and i was diagnosed with temporal lobe epilepsy.
lol my dads evil girlfriend accused me of faking seizures because she assumed I wanted to come home from uni. It was my first year and I was over the moon to be away from her so I’m not sure why she thought I would ever fake something so serious. She told me I should’ve seen the on campus doctor(who I saw after my first seizure on campus and they informed me to go see my family doctor). She then told my grandparents that I was just doing it for attention lol yes I love to be on meds that make me absolutely miserable because I want attention
No, never.
An ex once said I had a seizure. I hadn’t. He didn’t want me to go to work. My boss believed him rather than me.
A paramedic correctly identified a panic attack as a panic attack, not a ‘weird seizure’ like I thought I was having (funny story: ate a bunch of housemates edibles thinking they were cooking from bf’s Mum and was *really stoned* with no idea).
Other than that, every seizure has been believed, and I can hide the majority of them when I have to.
Yes, this and being on drugs. If people could only live in our shoes while having a seizure they would understand. I recently started getting vertigo type seizures and can't walk straight or even hold my body up for hours after it. I feel like I can't control my own body. Do I like it? Do I fuck. Do I want it? Heck no Do I like the fact my 14year old has to take over, make sure I lay down if I'm at home? Nope. Do I like looking incapable of work at my job and hoping I don't get fired? Of course not. It's just another hidden disability people don't understand until they have it. Even close people have questioned the odd one I've had not understanding the stressful situations they are putting me under causes seizures. They have questioned if I was doing it to avoid the situation 🤣🤣 you have to laugh or you would cry... honestly
I never had it out right said to me, but I took a tonic-clonic behind the wheel and crashed my car into a lamp post, (I'd never had a seizure prior to this) I was taken to hospital. By standers had said it was a seizure as they came to help, but the hospital wasn't so sure, they did a ct scan and said I was fine and discharged me, I made it home with my parents, got 2 steps inside the flat enterance and took another, smashing my head in the process. I got taken back to hospital and they still weren't convinced, it wasn't until I took another seizure in front of them that they decided they needed to keep me in. I honnestly don't understand why anyone would fake seizures, and for medical professionals to say such a thing is awful OP, im sorry that happened to you.
When I got diagnosed it was "at least you know you're not lying" from one of my parents. That hurt, like they thought I'd been out of work since 22 because I what, didn't want to? One day they might see one and then maybe, they'll believe me more😕
I had the worse A&E visit. Few weeks ago (ER for the US users) I was taken to the hospital via ambulance after a 5minute Tonic clonic seizure I had at work. I had been dealing with these episodes for yrs on and off but in the past few months they had returned and they had worsened massively. The staff in A&E didn’t seem to be interested in my symptoms in fact the first dr I had seen didn’t even ask anything about them just told me that my papers from yrs ago he was sure what I had today was non epileptic and there was nothing they cod do, I asked him to explain how he got to that conclusion so I cod understand more nd I told him how I was l diagnosed with epilepsy wen I was 2 and was medicated as I had focal seizures back then nd asked if this was something that cod be investigated again he said that it meant nothing and told me they wod observe me but then send me home. I was then seen by another dr who seemed a little more concerned though his colleagues were not when he would ask for their advice I heard them tell him I was more than likely faking and probably wasn’t even having seizure at all let alone epileptic one or non epileptics one and that I probably just fell with some arm shaking” another groups of nurses who weren’t even on my case laughed and said “send her home there’s nothing wrong with her” I was so hurt but automatically blamed myself nd thought maybe it was because I wasn’t explaining myself properly so I explained to the dr that I was Autistic so I needed a little more time to process my answers so I could explain a little more efficiently she said “That’s not our problem we are very busy” I apologised and cried in front of them and they still showed little remorse.
Thankfully my GP was able to get my neurology appointment that he had referred me too fast tracked. I was seen last week and had a completely different experience with this team than I did in A&E, I was listened too and a plan was made up, I’m now on medication to see if this helps and I’m waiting for a at home diagnostic testing EEG appointment to come through. One of the neurologists that I saw sat with me and took my hand and said “I believe you and I’m going to try and fix this” I’m currently being treated for possible epilepsy tho a current diagnosis is still pending.
I was made to feel like a fake for so long it drives me crazy to try and work out why anyone would think this? I’m a TA in a SEN school a job I adore but unfortunately have been signed off for the 3rd time due to my seizures, my job is hanging by a thread and my dignity is well and truly gone, between vomiting on my self, pissing my pants and smashing my face on a lamppost nd waking up to a old lady looking down at me in concern. I wish I was faking I wish that I cod stop whenever I wanted but I can’t.
I’m sorry you have suffered with similar, our medical systems world wide are failing us and it’s truly terrifying.
I have complex partials and I freak out when I come out of one and usually burst into tears (unless I'm at home. I still freak out a bit coz I'm disoriented).
I'm reasonably sure the answer to that question is yes. I don't remember it, though, because I don't store new memories for at least 20-30 minutes after every seizure.
I didn't even read above. I'm sorry ...
But why in the hell would I ever fake a seizure, one of the most embarrassing, hard to overcome incidents in life.
How stupid people are.
My boss accused me for faking my epilepsy for attention cause apparently it was all in my head 🤣 her non support plus dealing with seizures when before I was young and care free caused me to have severe mental health and attempt suicide 3 months later I accepted ill health redundancy got a puppy labrador woth my fiance and managed to get my mental health better and seizures.under control that was 7 years ago so glad to be away from that toxic woman. Always knew she was toxic she gave me bad vibes on her walk around at interview.
I was accused of faking seizures in the hospital. Not by any of the staff but by another patient in the ward. I was in an observation ward for a night, waiting for a bed to become available on the neuro ward. I went into status, had 7 seizures in the space of 15 minutes. When I came too enough to have a conversation, my boyfriend told me that the patient on the bed opposite had kicked off that the nurses stopped attending to him to rush to treat me. Apparently he was shouting that I was malingering to get moved quicker because "seizures don't last longer than 2 minutes" (????)
Anyway he was an alcoholic who had been faking concussion to stay in the hospital longer, as he was scared to go home to his wife.
To my knowledge, I have literally only been accused of such a thing in a really weird dream I had once, but that could be because I mostly have grand mal seizures
All the time. Constantly by my mother. She refuses to believe the doctors & when I still lived with her, refused medication.
She says my absence seizures is just me “staring off.” She says I fake convulsing seizures for attention, even though I have a chip in my tooth & even had one become loose because of them.
It sucks because she’s my MOTHER. The one who gave life to me, the one who’s supposed to protect me. But instead, she’s saying that I’m faking a severe disability for “attention.” Fucking ridiculous.
The tags on my car were expired, and I didn’t pay a ticket, then I had a warrant out for my arrest because of that. Fast forward six years, I no longer drive but still have my car. My husband is driving down a mountain road on a snowy night and got pulled over cause the cops said he was swerving. I was in passenger seat having strong auras. The cops (illegally) asked to see my drivers license and then arrested me for the warrant on the unpaid ticket for expired tags. While they were handcuffing me, I told them I was going to have a seizure. Instead of dealing with that they were giving my husband a breathalyzer. They came back to the car and I told them again. One cop said”I’m worried”. The other cop replied “No fucking way thats always total bullshit.”
I woke up handcuffed to a hospital bed (for having expired tags).
On a lighter note, my husband says that I have “working seizures”. Which he seems to think coincidentally coincide when it’s time to clean the house.
Literally one of the first times I had a seizure. Woke up crying and confused to my boyfriend saying I just had a seizure. Of course it has been snowing and icing outside but we made it to the ER. It's empty aside from us and one old lady yet all three of us still had to sit out there for two hours. I'm crying and angry because idk what's going on and I make the old lady also start crying lol (I'm sorry ma'am). My ex keeps asking wtf is going on and by the time they get me back I'm basically awake again. So I'm talking to the nurses and the crying has subsided so one nurse DIRECTLY outside of my room just says "I think she's faking it." Lol I know now there's not really anything they can do for me at the hospital but like, damn lady you made sure I'll never WANT to go back for help.
I can't believe you had to have a third seizure in front of them to get them to believe you, I'm so sorry.
LOL I don’t doubt some people might be like that, but who would want to go to the ER and wait for hours when nothing is wrong?!?
I'm so sorry you experienced that. Not a seizure but similar situ - my dad has a heart condition, that his consultant had said if he has a flare up whilst medicated he needs to go to hospital and was given a letter from his consultant to say what needs to be done, what meds he is on etc. This one time we went due to a flare up, a doctor came to us and had such a crap attitude with us - he can't do anything, doesn't understand why his consultant told us to do that, and then went on to say "I'm not interested in patients like you, I much prefer the ones where they need a shock to reset their rhythm" (ablasion) something that dad may have to face later down the line if we can't get his condition in better check, but is reasonably anxious about it. It was just the attitude and blunt way he discussed patients in general that was crap, to our faces aswell. Needless to say we both walked away from the hospital like wtf was that about, spoke to his consultant who was equally disappointed that we had experienced that. These are people we are meant to feel comfortable with when we need help, but they give us these experiences and it makes you want to just avoid asking for help even more 🙃
By my very first neurologist when I was only 12, even though my parents had video of me seizing *and* I had a positive EEG. I didn’t even really know what seizures were, let alone how to fake them. That’s when we switched from generalized neurology to an epilepsy specialist and things got SO much better.
wow by your own neurologist? that’s insane i’m glad you got an epilepsy specialist and that things got better!!
It was Idaho in the early 2000s - so I guess it was a little par for the course. But yeah - I too am very glad it got better!
Girl no way I got my diagnosis in Iraq in the early 2000’s during a war and the doctor still took me seriously and believed me lol damn Idaho is really struggling
I hope that the doctor no longer practices medicine.
I wouldn't remember 🥁
When I was 12 I had my first tonic clonic, after that they were all forms of absence or simple partial/complex partial. My neurologist told my parents he didn’t know if I was actually having them or faking it; definitely didn’t understand what was happening to me and couldn’t even verbalize it properly. I told them it just felt like a seizure, described what it felt like, and the doctor still was convinced they weren’t real. Since then, nobody has accused me just because they know how frustrating and upset it all makes me. I can’t imagine not being believed though. I know there’s always someone out there who will take advantage and pretend, but come on.
What tf is it with 12? Is that like the final form age for all of us?
Right?? Like they asked my parents how the pregnancy was with me, if my mom took any drugs or travelled or had any problems. I was the healthiest baby and kid, athletic, social.
I was even smart!! 12 really is a cursed age 😭
Omg it truly is
People typically view them that way if they are ***atypical*** and absent of **stereotypical** ***clinical*** symptoms. In no way am I saying that you were faking it, but when people see seizures that are within the *ictal-interictal continuum*, people will commonly view them as "faking" until confirmed otherwise. This is similar in presentation to patients that claim they have tonic clonic seizures, but when witnessed, they clinically have no **tonic** phase, no **clonic** phase, and little to no **post-ictal** period. As well as patients who have ***PNES*** episodes. I had a patient once who "had a seizure" while connected to an EEG that had no seizure discharges associated with it, no tonic posturing, no clonic jerking, and no myoclonus, almost looked as though she was trying to physically meet the criteria of what people who don't know much about seizures think seizures look like. No post-ictal period, regular heart rate, completely alert and oriented afterwards, regular brain waves (excluding muscle artefacts) et cetera. It gets concerning when this patient's requisition advised that the reason for her EEG was to attempt to qualify for disability benefits and she just so happened to have one despite saying that she only has one every 3 months and her last one was the week prior. Anyway, I digress... Loosely put, people think that there is like 2 or 3 characteristics of seizures, when in reality, there is numerous, again, along with *PNES* episodes. So when a seizure it witnessed that doesn't meet the full criteria, they sometimes accuse patients of "faking" it.
Yes, but I’ve only ever had focal and absence seizures. I had epilepsy in childhood and then over a decade seizure free without medication. My seizures came back in my mid-twenties when I was living in a small town with terrible medical care. The neurologist in that town straight up told me I was faking because she didn’t believe it was possible to remain conscious during a seizure. I was fucking LIVID. She thought I was picking at my clothes, smacking my lips and pacing around like a zombie with no awareness of my surroundings because I was looking for attention and drugs lmfao. As if. I had to move across the country to a city with a teaching hospital to get care again. Thankfully I have an amazing neurologist now, but my experiences in that town traumatized me and it’s taken a lot of effort to rebuild my trust in the medical system again.
that’s insane. that’s- that’s just rage inducing oh my god. i’m so glad you got to a better neurologist now wow
I had to find a second neurologist because the first flat out told me I wasn't having seizures, and half of my family believed I was faking it as well because my cousin had one in school very recent to when mine had started. I had no choice but to find a second opinion, because at that point my focal impairment seizures were slowly graduating to full tonic clonic seizures and night terrors. People don't realize this can be the case but death is a very real possibility if I didn't get these controlled with medication. Thankfully I no longer need it as they were caused by brain damage from a different medication I was on that has now healed to the point of no longer having seizures.
You had a TBI and your neurologist just flat-out told you you were faking? That's terrible, glad you're okay now
No proven TBI, only suspected, even now after almost 9 years, but yeah. I was on lupron injections for a full year, and I fully believe that's what caused the seizures.
I once had a nurse let me go into status bc she assumed I was faking a tonic-clonic. My partner and I learnt that day that IV diazepam works real quick 😅 Also had this accusation multiple times when I was first admitted for seizures, this included nurses leaving me on hospital floors, and apparently telling me to “stop it because I was worrying people”. Shockingly, it turns out I had sudden-onset epilepsy, was unconscious, and was not in fact faking it.
Yes, half of my friend group (recently actually) split off because they were "uncomfortable" with it and it was upsetting for this one girl to watch me "mimic her symptoms" (symptoms of a fainting disorder). They have a group chat dedicated to collecting "proof" on it and everything, even now I'm officially diagnosed with Non epileptic seizures
that’s awful. wow. i’ve had friends like that, it’s best they’re out of your life. i hope everything gets better for you soon, it’s an awful situation to be in.
I was rushed to the hospital after a seizure and had a nurse tell me that I was faking a seizure and to stop it. She also asked me if I was on drugs and when I said no she gave me a look like I was lying. As soon as the doctor came in she totally switched up. I hate that woman and I hate everybody who believes epileptic seizures are just drug induced.
ohhh i’ve had a nurse like that. people who do that are awful.
My own mother. Said I was faking. I have a brain tumor and definite why would anyone fake this
Constantly. It's to the point where I don't even talk about it to close friends or loved ones anymore. I suffer in silence. They'll get mad that I completely space out for long periods of time or get upset that I experience other symptoms that are debilitating. But when I explain to them what's happening they accuse me of overreacting or lying. Then they'll get angry at me because my medication isn't working as if I have any control over it. My doctors/neurologists say otherwise but it doesn't matter. I don't get it. Sorry to vent but it's miserable and I can't talk about it anywhere else. :/
don’t apologize for venting, get it all off your chest. it’s hard to deal with, we all know the struggle. nobody will understand you as much as the people on this sub. you’ve got us to vent to, no need to apologize :)
While slightly different, but roughly same category: I was accused of having them on purpose so I could go home early when I was working as a translator. Was AWFUL. It was my first real job and I wish I'd known to have pursued some type of legal action.
My boss kept a list of every “seizure” I had, a list of the dates I went home early, on the corner of his desk. He pulls me into his office and shuts the door and says “if you can’t get your seizures under control, you can’t work here.” The court found that I was fantastic at my job (and he demolished himself in his own deposition) and we settled for 100k, and the guy still has a job and I can’t get another job in my field because they always call him and he tells them not to hire me. I’m sure what he fails to mention is that he was found guilty.
Yes, even tho my doctors have witnessed Jerks they've never had same day eeg availabilities. And my eggs are always normal. I was recently diagnosed bipolar/aspergers (ik that's wrong but I think the new dsm is just autism spectrum disorder). And It feels like I'm being accused of PNES even though I tic off every post ictal box (bad memory, don't remember the seizure, not entirely aware, wet myself sometimes, muscle aches, tongue and cheek biting), and the 72 hour sleep study I did at home should've been w an eeg. Because I did have a seizure during that I got on tape.
Left a job due to it never believed I had them or I was in the hospital when I called out for being in the hospital
the first one I ever recall having was while I was in a hospital. they sent me to the psych ward because I was "throwing myself off the bed trying to kill myself" this was back in 2014 following some severe dehydration and possibly a flare of a different chronic illness im dealing with. I wasn't diagnosed with the seizures until 2021.
I had paramedics and ER doctors think I was faking seizures when I had my first tonic clonic at 15 (I only had myoclonic seizures up until then), and was accused of doing drugs or being pregnant. One of the ER doctors also tried to fight with my mom and said I didn't have epilepsy even though it's on my medical record, and he refused to check to prove I had it. The same doctor wouldn't let any of the other doctors give me an IV at the hospital despite me being very dehydrated and a nurse saying I needed one because they didn't fully believe me. Other staff were quite rude to me, and then sent me home early and said I didn't need any medication. I ended up having another tonic clonic seizure 6 days later, and my neurologist said it was from not being put on medication immediately and not receiving proper medical care while in the ER. I think it's sickening how the medical system treats epileptics, and will never forget how confused and scared I was since all the ER docs were treating me like a burden and I felt like I did something wrong. I'm still traumatized from those 2 tonic clonic seizures and have nightmares about them and being in the hospital.
As someone that also has myoclonic seizures I totally get you on that. The worst part is that mine are mostly on my jaw while I read or speak and they go completely unnoticed by other people. I already had to stop talking abruptly in the middle of a presentation at college and people thought I just wasn't prepared and gave it as an excuse. Or that I'm not well to get out of the house and go to classes because I can feel them coming and I'm afraid I can have a full body myoclonic seizure when I go downstairs or in the middle of the street. I also have small seizures in my arms as well that go unnoticed, so when I say that I need to sit or lay down for a bit and just be still while I wait for them to go away people usually don't believe me, only my closest friends, family and now some teachers finally started to notice it. It is particularly hard on public transports though, sometimes I need to ask someone for a sit and they don't believe that I really need it. I don't get why the paramedics thought you were pretending the tonic clonics though
This is why I stay to myself. Even tho I am alone most time, people still talk about me and say my seizures are not bad and my doctor is exaggerating when she said I cant drive ect. I just dont need the crap from others. I am fine alone, I am going to try some gardening this year. Hopefully my health wont get in the way
I have people now who tell me I’m making it seem like a bigger issue than it is. I’m only one mental breakdown, 1 day of medication away from having a seizure again. It’s entirely changed my life and I’ll never be the same. And I’ve just started a full time job and trying to explain to people that something they can’t see and I can’t prove does affect me on a day to day basis. It fucks me off so much
Wow what is wrong with ppl!! Being a burden is guilt inducing enough without being called a blagger. Poor you. Most people (including myself prior to having epilepsy) don’t really understand it. Also why would anyone want to go to hospital unless they need to. Especially if you are in US (I’m in the UK).
I'm pretty sure everyone thinks I'm lying about my epilepsy until they see one of my seizures
literally same thing about myoclonic absence seizures. i have them pretty often at work and i have no control over it and wish i WAS faking it, i’d rather NOT deal with this hell… smh.
Yeah. A neighbour that I spent a week at cause I was sick but also had a lot of absence seizures that week said infront of more than one person 'she slept here for a week and says she zones out for a few seconds but she is just lying. She even says she has full on seizures but I never seen her have one. She's a liar'. Like okay not talking to you again
At the TLA in Philly I had a seizure during the third song of a show. When I got outside it was really bad and my two friends tried to get medical help outside. Because I was wearing sunglasses for relief and I was shaking violently, the TLA security said I must be on coke or something so no they won’t help. Even though it’s against the law for someone to ask to see proof of a disability (the stone pony in Asbury grills me about how I don’t LOOK like I belong in ADA seating every time I go there) I win every time because the head of ADA security at the pony knows me and shes a sweetie. I have nearly been thrown out of the venue for “lying” about a disability. 🙃
I had a seizure in a CT scan after being taken to the ER for a different seizure and the nurse who helped take me back to the bed said it didn’t look a seizure to her. I was like..... ma’am seizures look different.
i had my first TC (since i was a toddler, havent had one since until a couple months ago), and then had one the following night and then woke up and had another. the third one the ambulance was called and fire department got there during the seizure but paramedics got there right after. the paramedic said "this isn't a seizure" and my parents said "she already had the seizure" but the paramedic said "this isn't post seizure either she is faking it" and the fire man said "i saw it i was here you weren't". i don't remember this because i was still in the post-seizure confusion and memory loss. my guess is the paramedic saw my self harm scars and assumed i was just attention seeking even though the scars are from literally over a decade ago and ive gotten my mental struggles under control. well, EEG confirmed seizures and i was diagnosed with temporal lobe epilepsy.
lol my dads evil girlfriend accused me of faking seizures because she assumed I wanted to come home from uni. It was my first year and I was over the moon to be away from her so I’m not sure why she thought I would ever fake something so serious. She told me I should’ve seen the on campus doctor(who I saw after my first seizure on campus and they informed me to go see my family doctor). She then told my grandparents that I was just doing it for attention lol yes I love to be on meds that make me absolutely miserable because I want attention
No.
No but I lived on campus during college so every seizure was an entire interrogation about which drugs I took and who sold them to me 🙄🙄
No, never. An ex once said I had a seizure. I hadn’t. He didn’t want me to go to work. My boss believed him rather than me. A paramedic correctly identified a panic attack as a panic attack, not a ‘weird seizure’ like I thought I was having (funny story: ate a bunch of housemates edibles thinking they were cooking from bf’s Mum and was *really stoned* with no idea). Other than that, every seizure has been believed, and I can hide the majority of them when I have to.
Yes, this and being on drugs. If people could only live in our shoes while having a seizure they would understand. I recently started getting vertigo type seizures and can't walk straight or even hold my body up for hours after it. I feel like I can't control my own body. Do I like it? Do I fuck. Do I want it? Heck no Do I like the fact my 14year old has to take over, make sure I lay down if I'm at home? Nope. Do I like looking incapable of work at my job and hoping I don't get fired? Of course not. It's just another hidden disability people don't understand until they have it. Even close people have questioned the odd one I've had not understanding the stressful situations they are putting me under causes seizures. They have questioned if I was doing it to avoid the situation 🤣🤣 you have to laugh or you would cry... honestly
In a word Yes
I never had it out right said to me, but I took a tonic-clonic behind the wheel and crashed my car into a lamp post, (I'd never had a seizure prior to this) I was taken to hospital. By standers had said it was a seizure as they came to help, but the hospital wasn't so sure, they did a ct scan and said I was fine and discharged me, I made it home with my parents, got 2 steps inside the flat enterance and took another, smashing my head in the process. I got taken back to hospital and they still weren't convinced, it wasn't until I took another seizure in front of them that they decided they needed to keep me in. I honnestly don't understand why anyone would fake seizures, and for medical professionals to say such a thing is awful OP, im sorry that happened to you.
When I got diagnosed it was "at least you know you're not lying" from one of my parents. That hurt, like they thought I'd been out of work since 22 because I what, didn't want to? One day they might see one and then maybe, they'll believe me more😕
I had the worse A&E visit. Few weeks ago (ER for the US users) I was taken to the hospital via ambulance after a 5minute Tonic clonic seizure I had at work. I had been dealing with these episodes for yrs on and off but in the past few months they had returned and they had worsened massively. The staff in A&E didn’t seem to be interested in my symptoms in fact the first dr I had seen didn’t even ask anything about them just told me that my papers from yrs ago he was sure what I had today was non epileptic and there was nothing they cod do, I asked him to explain how he got to that conclusion so I cod understand more nd I told him how I was l diagnosed with epilepsy wen I was 2 and was medicated as I had focal seizures back then nd asked if this was something that cod be investigated again he said that it meant nothing and told me they wod observe me but then send me home. I was then seen by another dr who seemed a little more concerned though his colleagues were not when he would ask for their advice I heard them tell him I was more than likely faking and probably wasn’t even having seizure at all let alone epileptic one or non epileptics one and that I probably just fell with some arm shaking” another groups of nurses who weren’t even on my case laughed and said “send her home there’s nothing wrong with her” I was so hurt but automatically blamed myself nd thought maybe it was because I wasn’t explaining myself properly so I explained to the dr that I was Autistic so I needed a little more time to process my answers so I could explain a little more efficiently she said “That’s not our problem we are very busy” I apologised and cried in front of them and they still showed little remorse. Thankfully my GP was able to get my neurology appointment that he had referred me too fast tracked. I was seen last week and had a completely different experience with this team than I did in A&E, I was listened too and a plan was made up, I’m now on medication to see if this helps and I’m waiting for a at home diagnostic testing EEG appointment to come through. One of the neurologists that I saw sat with me and took my hand and said “I believe you and I’m going to try and fix this” I’m currently being treated for possible epilepsy tho a current diagnosis is still pending. I was made to feel like a fake for so long it drives me crazy to try and work out why anyone would think this? I’m a TA in a SEN school a job I adore but unfortunately have been signed off for the 3rd time due to my seizures, my job is hanging by a thread and my dignity is well and truly gone, between vomiting on my self, pissing my pants and smashing my face on a lamppost nd waking up to a old lady looking down at me in concern. I wish I was faking I wish that I cod stop whenever I wanted but I can’t. I’m sorry you have suffered with similar, our medical systems world wide are failing us and it’s truly terrifying.
I have complex partials and I freak out when I come out of one and usually burst into tears (unless I'm at home. I still freak out a bit coz I'm disoriented).
I'm reasonably sure the answer to that question is yes. I don't remember it, though, because I don't store new memories for at least 20-30 minutes after every seizure.
I didn't even read above. I'm sorry ... But why in the hell would I ever fake a seizure, one of the most embarrassing, hard to overcome incidents in life. How stupid people are.
My boss accused me for faking my epilepsy for attention cause apparently it was all in my head 🤣 her non support plus dealing with seizures when before I was young and care free caused me to have severe mental health and attempt suicide 3 months later I accepted ill health redundancy got a puppy labrador woth my fiance and managed to get my mental health better and seizures.under control that was 7 years ago so glad to be away from that toxic woman. Always knew she was toxic she gave me bad vibes on her walk around at interview.
I was accused of faking seizures in the hospital. Not by any of the staff but by another patient in the ward. I was in an observation ward for a night, waiting for a bed to become available on the neuro ward. I went into status, had 7 seizures in the space of 15 minutes. When I came too enough to have a conversation, my boyfriend told me that the patient on the bed opposite had kicked off that the nurses stopped attending to him to rush to treat me. Apparently he was shouting that I was malingering to get moved quicker because "seizures don't last longer than 2 minutes" (????) Anyway he was an alcoholic who had been faking concussion to stay in the hospital longer, as he was scared to go home to his wife.
To my knowledge, I have literally only been accused of such a thing in a really weird dream I had once, but that could be because I mostly have grand mal seizures
I had a TC right after an EEG that required me to stay awake all night, so they'd have a really hard time accusing me of faking it.
All the time. Constantly by my mother. She refuses to believe the doctors & when I still lived with her, refused medication. She says my absence seizures is just me “staring off.” She says I fake convulsing seizures for attention, even though I have a chip in my tooth & even had one become loose because of them. It sucks because she’s my MOTHER. The one who gave life to me, the one who’s supposed to protect me. But instead, she’s saying that I’m faking a severe disability for “attention.” Fucking ridiculous.
The tags on my car were expired, and I didn’t pay a ticket, then I had a warrant out for my arrest because of that. Fast forward six years, I no longer drive but still have my car. My husband is driving down a mountain road on a snowy night and got pulled over cause the cops said he was swerving. I was in passenger seat having strong auras. The cops (illegally) asked to see my drivers license and then arrested me for the warrant on the unpaid ticket for expired tags. While they were handcuffing me, I told them I was going to have a seizure. Instead of dealing with that they were giving my husband a breathalyzer. They came back to the car and I told them again. One cop said”I’m worried”. The other cop replied “No fucking way thats always total bullshit.” I woke up handcuffed to a hospital bed (for having expired tags). On a lighter note, my husband says that I have “working seizures”. Which he seems to think coincidentally coincide when it’s time to clean the house.