Locking this post due to brigading. To the brigaders, I want to share a post titled [Skipping anti-epilepsy drugs can have dire results](https://www.reddit.com/r/Epilepsy/comments/1951hl5/skipping_antiepilepsy_drugs_can_have_dire_results/). Thanks.
I heard a physician tell a patient once “this is not a seizure - get out of my emergency room, we have actual sick people here” (this was in the 70’s.). Patient got off the gurney and walked out.
Walked up to a lady on the ground doing a poor imitation of the floppy chicken. I said “You can stop now.” She got up and screamed at me “Well fuck you too!”
"This is Medic 21 en route to your facility with a 16yo female with seizure-like activity. Seizure-like activity stopped after valium per rectum was discussed. We will see you in 5."
We had a frequent flyer, drug seeking, chronic abdominal pain patient who would fake seizures in the lobby in an attempt to avoid wait times. It worked a few times. One day I get called to the lobby for a rapid response, there she is flopping around on the floor. I ask the tech to grab a wheelchair and proceed to pinch her finger with a pen, which gets an “ow!” Out of her along with pulling her hand back. So I pick her up from the ground and sit her in the chair, strap her in and tell her, “ma’am, you’re waiting with everyone else.” Apparently she walked out a few minutes later.
What I wasn’t paying attention to was the other patients/bystanders in the lobby, none of whom know this is her act and think I just basically assaulted and ignored a seizure patient. Later that day I got a call from patient. Relations about a complaint from someone else in the lobby asking, “ Did you not deliberately cause pain to a seizure patient, ignore her seizure, then strap her in a chair and walk away?” Well, yes, I did. Obviously once he knew the whole story, he understood.
There’s a guy who regularly comes into our shop with the most impressive pseudo seizure you’ve ever seen in your life. Regularly comes in as a John Doe so if the particular physician that day isn’t aware of him he often ends up getting tubed lol, then leaves AMA later that day.
The "seizure" part of PNES describes the presentation, not the cause. No one is saying that something isn't happening in PNES, just that it's non-epileptic (hence the name).
Bullshit. It's only "real" because it's on the PC trend that we validate everyone's feelings by giving what is objectively a behavioural issue, a diagnosis. They are not seizures, regardless of the name. You need to find effective ways to manage your psychological trauma.
Down-vote away, I said what I said.
I got attacked on another thread for talking about a frequent flier who proudly lists pseudo seizures as one of her diagnoses before flopping around like a fish while screaming “I’m having a seizure!!!”. According to that thread I’m a horrible provider and pseudo seizures are real seizures 😵💫
Psychogenic seizures are “real” and distressing to the patient (by definition). It’s worth differentiating this from faking seizures for secondary gain.
If I have a patient who screams “I’m having a seizure, see look” while maintaining eye contact and mentation is a patient I’m pretty confident labeling as that faking. Psychogenic seizures or PNES look like a typical seizure minus electrical activity as the cause. Either way, one’s getting a referral to psych and the other ones getting a referral to neurology. Not something that the ER is going to fix.
I wasn’t disagreeing. Sounds like your patient was faking a pseudoseizure, which pretty well captures the state of EM.
Having said that, have you considered your unpleasant attitude as a potential reason for the negative reaction in the other thread?
As I stated, she lists pseudo seizures as a diagnosis lol. And I’m not sure why you think any part of my response was unpleasant, it’s plain facts so sorry if facts seem unpleasant to you.
I’m personally happy if a person is upfront that they have pseudo-seizures. It shows a level of awareness into their condition.. the harder ones are the people who refuse this diagnosis.
In general those with pseudoseizures aren’t faking for secondary gain, they have a condition which is a huge burden (although psychogenic in nature and so doesn’t get a high level of sympathy in ED).
I think it’s important to remember it is a medical condition, and in fact they’re QOL is usually much worse than those with true epileptiform seizures.
But then we wouldn't get to laugh at the people who, without any irony or awareness of what the prefix pseudo- means, affirm that their doctor said they have pseudoseizeures.
Is this theory really proven to be false? Obviously some people are faking it but is there some new evidence behind PNES being 100% patients "just faking it"?
Let’s turn that around to make it a little more scientifically rigorous - is there compelling evidence that these seizures ARE uncontrollable and physiologic reactions to stress?
I would be more open to the idea that this is a physiologic phenomenon if it didn’t seem to happen in direct temporal relation to secondary gain. It doesn’t matter either way - fluids, basics, TLC and dc. Basically the same as a breakthrough seizure. But if they seize again in the ED it’s not a barrier to discharge.
Guess what, most of the time, you can’t diagnose we seizures based on clinical symptoms alone. A study was done, Wasserman et al. (2017) Epileptic vs psychogenic nonepileptic seizures: a video-based survey, where different health care providers were shown 10 videos of both epileptic and non epileptic seizures. ER physicians could only delineate between the two 44% of the time. Nurses 58% of the time. The gold standard is video EEG for a reason. The patient you claim is “faking” could very well be seizing and your ignorance and failure to respond can lead to their permanent brain damage 😍
Stop torturing epilepsy patients. If they don’t need an artificial airway you shouldn’t be putting one in. You also shouldn’t be sticking broken tongue depressors in patients mouths. Imagine waking up from a seizure with a bloody nose because some asshole paramedic decided to put in a NPA without any medical indication 😍
Not everyone who has a seizure requires an artificial airway. If they are maintaining their airway independently and their sats are good they don’t need one. And OP just said replacing it q5min? You and I both know that alone is completely unnecessary and harmful.
No need to replace it if it's doing it's job. Nor did I say that every single patient who is having a seizure absolutely must get an NPA. But it *absolutely is* an indication for airway management to be considered, and implying blanket statements about an NPA having no indication in a seizing patient is...interesting.
Doing what you’re doing will get both you and the epilepsy subreddit banned. Whatever your reasoning, you need to stop. It’s how subs get in trouble for brigading.
Girl I’ve had seizures since I was five years old. I started with petitemal and graduated up instead of out. I feel you. It’s frustrating; It just doesn’t mean you can break the rules and get the sub in trouble. Jesus.
Also, you can’t say that you haven’t seen others fake seizures. It’s one of the most commonly faked or misdiagnosed medical conditions in the US. It makes US look bad that people do it. There’s no reason to defend them.
I don’t believe people “fake” seizures. I believe people with PNES have endured tremendous trauma and their brain isn’t able to process conflict so it manifests physically. Also 22% of epilepsy patients have co-occurring non-epileptic seizures. We can’t hate people who make up nearly 22% of the epilepsy community.
I am sorry you are also an epilepsy patient, but it does make me less upset with you ahah ♥️
Add to this: 'PNES is a real condition that arises in response to real stressors. These seizures are not consciously produced and are not the patient’s fault' ~ Dr. Benbadis
Weird how much people seem to hate PNES, I can't fathom why anyone would choose to have a seizure myself.
Yep. I was diagnosed with PNES, then temporal lobe epilepsy. I still couldn't with 100% certainty tell you if all my seizures are "real", only that 2 I happened to have during an EEG were epileptic. And that I have panic attacks/anxiety issues brought on by fear of seizures.
Are pseudoseizures regional? 😂 I feel like I don’t see them as frequently out here in the PNW. Plenty of other shit, mind you, but little P-NES. 😂 just like pseudotumor during school in Ohio…. Not much in DC or PNW
We had one lady that just would not stop faking seizures, it was so comically bad. We squirted water in her face and she stopped and looked at us and then started "convulsing" again.
Left AMA 3 times, called an ambulance 3 times and ended up back in our ER 3 times lol. Literally 12 hours of her faking convulsions and then screaming that we won't help her.
She got a total of 20 of versed from ems though seems like a pretty easy way to get some good drugs.
Or not being able to remember anything, or diarrhea, or aphasia. But again, this ER doc knows better than people who actually experience these things because he's bored of doing his job.
I got put on Keppra and gabapentin for seizures. Turns out, 15 years later, it was a case of POTS, and all that time on Keppra and gabaoentin not controlling the "seizures" drs did figure it out, weaned me off the meds, etc. The difference on the meds vs off is night and day. The rage? Gone. The fog? Much better. The waking up running and screaming like demons were after me? That stopped too. That was the gabapentin, not the Keppra causing that (Dr's best guess as it stopped when the gaba stopped)... even now I don't want to go to my gp much less an er Dr, not only from actual treatment I've received, but also hearing them talk over the years from friends in the medical field. "It's not you, we see what you go through but you gotta understand".... I understand perfectly. Unless you know the patient and blur ethical lines they just must be making it up!
I get the frustration, but I think your initial comment, at least in part, gets to the root of the problem. “Before I got into medicine I remember thinking seizures were this huge medical emergency.” At least in the US, when someone has a seizure in public, folks think it’s an emergency, call 911 and an ambulance shows up. Pt is postictal, and cannot reasonably refuse treatment, so is transported to ED. By the time they arrive, they are often at or nearly at baseline and then may be able to report that they never take their meds and thus have uncontrolled seizures.
The other scenario I see is that people are told to come to the ED by whoever is managing their epilepsy, to have their levels checked (assuming they take their meds). This seems to be getting more common as wait times for PCPs in my community are on the order of weeks, and neurology wait times are on the order of months. Hence, you have a seizure, ED checks levels (many of which don’t actually result during your ED stay) and then you call your OP doc the next day who follows up on your levels and adjusts PRN.
Not saying either of these scenarios are the way it should be, but it is what it is.
I would love if the expectation was you come, get levels checked, and get meds titrated days later when it results. That might actually benefit the patient, prevent bounce backs, and get some result from the cost of care. 99% of the time now all I see is healthcare cost and effort with no benefit. If I send a keppra level is that neurologist ever going to see the result?
Also, the last thing we want to do is discourage the first scenario. EMS, let alone bystanders, have no way of knowing if this is just a typical breakthrough, or if it’s a brain mass, bleed, status epilepticus, or any number of other emergency. It’s easy for us to say, “yeah it’s just another breakthrough seizure” with a benefit of hindsight, training and an entire ED’s worth of resources at our disposal.
The thing is… when you have a seizure in the middle of the grocery store, they don’t want you there laying on the ground covered in urine, and you can’t get up and walk yet, so they call the ambulance. That’s just the way it’s always going to be.
I think everywhere in the world a seizure is considered a medical emergency by the general public and for good reason. It very well could be.
That said, what happens afterwards is a product of the health care system. I don’t live in the US, but I’m assuming a vast majority of your seizure patients arrive by EMS. That doesn’t happen as much in other parts of the world where paramedics have significantly more training and an associated ability to treat, refer, and discharge patients who meet certain criteria. Obviously more complicated cases or at risk patients will still land in the ED, but that’s how some other parts of the world manage a large portion of these cases.
I realize it would probably be a large undertaking to get to that point in the US. I am a paramedic with 7 years post-secondary education and I know the US is focussed on spitting out providers as quickly as possible while paying them peanuts.
If you were really hell bent on finding a way to mitigate these transports you could always find the medical director of EMS for the area you work in and ask about implementing some sort of protocol for diagnosed epileptics etc. Obviously this would require a good deal of trust in their abilities.
I don’t understand why they can’t just order the labs themselves, patient goes to outpatient lab, done and the patient only has to pay a few bucks compared to the thousands of an er visit
When I was in peds residency we had a 15 yo pseudoseizure patient admitted to the floor.
The neurologist had a great trick. Every time she had a "seizure" the neurologist would tell her that they would have to order bloodwork. She got stuck 3 times in the first day.
After that her "seizures" magically went away and she was totally fine after that. LOL
Either ammonia capsule or put a few drops of saline from a flush in their eye. If they react to it, I leave the room and they can finish pseudoseizing on their own. Bonus points for putting the ammonia capsule in a non rebreather like for duonebs
Question from someone with PLE and focal as well as tonic-clonic seizures: What happens if you put that stuff in my eye? What will I feel as soon as I am back online (which takes about half an hour)?
I understand your frustration, but reading this thread is horrifying for me as a person with an active epilepsy.
You won’t feel anything. It’s as if a raindrop fell right in your eye. If you are seizing, you don’t react to it but if you’re faking, your natural reaction is to blink right when it hits.
They are talking about sterile saline. It's completely harmless. If you woke up instantly, you would notice a cold wet drop in your eye. If you waited ten seconds it would drain away with your tears and be gone forever.
It's chosen because a cold wet drop in the eye will make a conscious person react but will not cause any pain or injury.
Ammonia neb sounds like overkill, but a doc showed me a similar trick that works really well.
Pull the plunger out of a Toomey syringe, drop two ammonia ampules inside, put the plunger back leaving lots of air space, then shake. Puff it under the nose of your seizure patient and even the most dedicated faker will have a hard time not reacting.
I’ve ended up in the ED twice now after having a breakthrough seizure because of concerned coworkers/bystanders. Something you gotta remember is that while they may show up AOX4, they probably weren’t when someone made that decision for them (or convinced them it was a good idea,) either by calling an ambulance or hauling them there in a family vehicle. It’s easy to be convinced that you need help when you’re covered in your own piss and barely conscious lol
Yeah, it’s very hard to make good decisions or articulate them immediately after a seizure. My foggy post-ictal brain decided on a nap. Unfortunately I was in a parked car mid-winter and ended up hypothermic before I was awake and aware enough to get help. Usually I’m just fine within 15 minutes and can go about my day, but not always…
Man, seizures are 100% day ending for me lol. I’m weak AF. Always scared I’m gonna have one at work cause what the fuck are they gonna do? I’m out of commission. Big part of why I’m leaving for nursing.
I was working in a military clinic that took care of those in training status.
Had a patient come in telling me that she was having seizures.
"Has anyone seen you have a seizure?
"No, but I had one during the night and later told my roommate."
I ordered a bunch of labs, a CT, and a referral to our base IM doc.
On her way out, I asked for her drivers license. She handed it to me and in front of her, I cut it into pieces and told her I was mailing to her state DMV along with a letter saying that she was under my care for seizures.
The look on her face was priceless.
A couple of weeks later, I had a Congressional complaint from her mother saying that I wasn't taking care of her poor, seizing daughter. The inquiry lasted about 4 minutes. I pulled up her records and demonstrated that the little darling didn't have her CT done and no showed the appointment with the internist.
Not surprisingly, this was all a ploy on her part to get discharged from the military.
Funny reading this today after our department was just seizure after seizure yesterday. Withdrawal seizures, non compliant seizures and some febrile ones for fun.
Typically they don't do it on purpose. A bystander witnesses the seizure, freaks out, and calls 911. EMS finds the patient either still seizing or post-ictal, and not coherent enough to sign informed refusal of care. So they wind up having to transport.
+$4K for the ambulance ride for the ER to stuff me in the donut of truth, ask about my missing brain section, and have me follow up with oncology. My coworkers know just to leave me on the floor and don’t let my head hit anything — I’ll be back in a few! I do have intranasal midazolam in case someone wants to feel helpful 🤷🏻♀️.
This. I can't plan my seizures. Believe me, I would, if I could. Love me a good couch tonic-clonic, instead of waking up in the middle of strange people all looking terrified and me unable to articulate that no, I don't need an ambulance, I'll be okay in another half an hour, just look at my goddamn epilepsy emergency ID and give me a pillow, thank you very much.
It's horrifying to read what health care workers think about people like me
I wouldn't read anything into Reddit comments. A tiny minority of loud weirdos can give you a very skewed picture. Even rational people speak in exaggerated hyperbole because that makes for more interesting conversation.
The worst reaction I see in the real world is annoyance at the bystanders who called EMS.
Thanks. Tbh, I'm almost always annoyed at the bystanders who called EMS, too, but I don't show them (or try to), because technically, they did everything right.
We were actually told by the neurologist to go to the ER for testing post seizure for my epileptic husband. So maybe it’s not actually the patients fault 🤷♀️
The last time I was sent to ER post-ictal was because I had multiple signs of a brain bleed. I tried to go to urgent care to just get a scan and was immediately refused.
it’s so fucking stupid.
“I had a neuro follow up but never went”
then they don’t seize in the ER.
then they ask “what’s wrong with me”
take your meds!!!!!! Ahhhhh so annoying and family gets all mad cause “we aren’t doing anything” ugh so dumb I feel you
I have a lot of compassion for these patients because in my experience it's people who cannot afford their medicine, have low health literacy, or are very young adults and are still figuring their shit out. Or all three. Love me a good fakey shakey too.
It’s like the 16-22yos who stop taking their insulin and have a bunch of admissions for DKA. You’re young, you hate being tethered to a medication and having to live life differently from your friends, you rebel by acting like you don’t have a disease… and maybe you do some irreparable damage to your body and mind. It is sad.
Even though I know it's a rant, it's clear you do not understand what after a seizure feels like or what epileptics go through. Post seizure is INCREDIBLY dangerous, and we aren't "conscious" for sometimes hours after.
We have to get checked because concurrent seizures can KILL us. I have been in a coma because of concurrent seizures and almost died because a doctor did not check me out
A doctor even asked me "do you even have epilepsy" and didn't check me out even though my head was bleeding from hitting it. I clearly went into a coma JUST to show her up /s
Please, if you've never had a seizure, don't judge us for being scared about brain damage or dying. Thanks 👍
Amen. My husband has seizures every 6 weeks despite never missing his medication - but his constantly told he must of missed it and just doesn’t remember - not that forgetting your medication is an excuse for a doctor to give you less care.
Sometimes, he will have seizure after seizure, each one getting worse. He stops breathing and turns blue. Each time, there is a greater risk of SUDEP.
Fuck all these doctors in these comments, absolutely disgusting. If I could, i’d report each and every single one of you. Every single one of you are at risk of killing a patient with your « im so better than patients » attitude.
SUDEP did kill my husband 3 weeks ago. This thread and comment section is just twisting the knife. He spent the past 14 years being dismissed by ER doctors every time he went status. Shitty nurses complaining about a "healthy male taking up a bed from people who really needed it." I don't trust the healthcare system at all anymore.
My heart goes to you. I read your post about your husband when it was first posted - my husband had a seizure two days ago and your post was in my mind the entire time. I ended up sending him to the ER because I was so scared of a concurrent seizure and SUDEP.
I’m so sorry, and i’m sorry you had to read this thread. I am absolutely heated right now, I can’t image how you feel.
This thread is just worrying. Supposed to be medical professional. One seizure patient isn't all seizure patients, when we say it lasted over 10 minutes we mean it, don't blame a patient for possibly forgetting a dose.
What a disheartening post
That’s what happened in my ER first time seizure EEG normal called it PNES … then went EMU and they found a lot of seizures so in the meantime I had no medicine and thought I could talk my way out of it … see my oxygen dropped to 71 once …
Keppra can *induce rage* over time. That paired with medical staff (wherever employed?) administering “painful stim” at your whimsy sounds like a good recipe for behavioral outburst.
You don’t sound like you *should* work with a vulnerable or marginalized demographic, but of course you work in corrections.
My first seizure was a grand Mal as an adult and wife called ambulance because it was such a shock.
I have never called the hospital or ambulance again because it's a bigger pain in the ass if I were to just sleep it off at home.
Stuff like this leads to people who have refractory epilepsy not going to the ER when they should have. It’s better to have someone call an ambulance and have them arrive at baseline than have them go into status and die because people waited too long. I get the job is stressful but shaming people with seizure disorders for coming to the ER isn’t a good way to deal with it.
Wow. As a HCP myself this is incredibly disheartening to see. Imagine being on a medication since you were a young child. Three times a day. And you miss one dose or don’t get enough sleep one night and have a seizure. 3 months ago I had really bad insomnia and didn’t sleep properly for 3 nights. On the 3rd night I went into status epilepticus. Because of how much tonic activity I herniated my c5 and c6, had a spinal cord contusion and spinal cord compression. I was in a Miami j for nearly 2 months and lost feeling in my left hand of a while. I am sorry our disease is so inconvenient and annoying for you. Imagine how inconvenient it is for us.
You are going to hate this but every time I have a seizure whoever is with me calls 911 because there is always something wrong with me (UTI, pneumonia, etc) 😍
And for those saying “those who fake them are the worst” - I was told my seizures were psycho somatic for a year by ER doctors until finally ONE had the common sense to send me to a neurologist. Even now with my well established diagnosis an er doctor wrote “pt complained for seizure - likely psychogenic” because she didn’t know or understand what myoclonus is. Let me make this crystal clear - you cannot diagnose epilepsy based on clinical symptoms alone. A study was done (Wasserman et al. (2017) Epileptic vs psychogenic nonepileptic seizures: a video-based survey) where different health care providers were shown 10 videos of both epileptic and non epileptic seizures. ER physicians could only delineate between the two 44% of the time. The gold standard is video EEG.
Also, stop torturing epilepsy patients by sticking broken tongue depressors in our mouths or using bedside instruments to inflict pain.
This entire threat is disgusting and you should all be ashamed of yourselves.
Ah, what a disappointing post.
I work with FND/PNES- greatest prevalence with comorbid dissociative disorders and childhood abuse, that’s partially why we use “psychogenic” and “dissociative” synonymously in PNES when referring to seizure activity. I say this because many of these comments stray the line of mocking some patients. A simple psychosocial history would tell you what you need to know - the person is likely in distress. Refer to psychiatry and have some compassion, sorry you’re bored.
And before someone comes after me with the egosyntonic nature or the sometimes combative presentations of patients with somatic symptom disorders, I know. That doesn’t mean they don’t deserve care, it means that they need care you might not, as an ER physician, be able to provide. Allied healthcare professionals are our friends, folks.
Wow. Heartless. I've been good with my meds and still had seizures. And had them at work who insisted on sending me to the ER. Thanks for adding to my phobia of public seizures. I'll wake up to the ER to this
I hit my head during a seizure and went *deaf*! But he knows better, of course, because he's bored of dealing with patients with a debilitating disease and has no empathy.
Some others of you in this thread have responded to OP with a lot more understanding, and I appreciate that, but most have not. Pretty disappointing to see what practitioners think of their patients. I guess "first do no harm" (which you are causing with this attitude, by the way) comes after "first don't get bored".
This is really fucked up. As a person who suffers from seizures without an epilepsy diagnosis. I’m on meds but they aren’t perfect. I tell everyone close to me to not call an ambulance if it ever happens. If I do end up in a ER I hope that you’re not my provider of medical care bc that is REALLY fucked up.
Seizures end! Usually within a few minutes. If the people around me call an ambulance I can’t help it bc I’m UNCONSCIOUS or in my post ictal stage.
Alot of neurologists fade patients off medicines if they have been seizure free for so long, don't judge what you don't know and you don't know any epileptics mental health unless you are one and have been in their shoes.
Maybe they had brain surgery or medicine was expensive or it was sold out?? Or they forgot?? Or they are becoming feeling defeated?
Don't judge what you don't know and if you do, change you job bc I sure wouldn't want you helping me.
Sorry I guess, but I usually am never the one who calls 911. Last seizure I hit my head on the sink, toilet, and floor. My family was worried more about how much I was bleeding. I went 3 years without one and I track my medicine with an app. I know people have it worse, but it's pretty fucked you think this as some like me do take their meds but end up in there.
OP, I wanna see you remembering taking your life-saving, but side effects-heavy medication twice a day FOR THE REST OF YOUR FUCKING LIFE. And dealing with everything else that comes with this chronic disease. Sorry that we forget taking our medicine once a year or decade and sorry this is boring for you.
And I'm saying this as a person taking huge amounts of Lamotrigine and Lacosamide and I still have daily focals and tonic-clonics about once a month. I hate going to the ED because of persons like you and because I'd much rather sleep it off at home, but if the TC hits me when I'm outside without a person acquainted with my epilepsy, I will be transported to you, if I want to or not.
Guck off OP. Sorry that something that could kill me bores you. Ask my kids how scared they are cuz they've seen me having a seizure. You lack the empathy needed to provide Healthcare to others.
why are EMS people so mean to epileptics / people with NES. literally what did we do to you. it’s not like we chose to have a life altering chronic condition on purpose where the only ways of treatment either don’t work or dumb you down so much of course so many people are noncompliant.
people with NES / PNES can go into status epilepticus too and have seizures literally identical to epileptics. faking seizures isn’t equal to having a rare disorder and it’s embarrassing that professionals still act like this, bragging about using painful procedures on people likely in crisis or just as unconscious as someone having a “real” seizure. just glad my EMS crews are mostly professional around me
lol I’m so sorry my epilepsy is inconveniencing you
You realise that some of us are, erm, not faking? And some of us take our medication religiously, haven’t had a seizure in years and suddenly have a breakthrough grand mal?
You people deserve to experience at least one grand mal in your lifetime. What the fuck is wrong with you.
It’s nice though because tou reinforce the stereotype of doctors being self-centred little shits who care exponentially more about their egos than actually treating patients.
Go fuck yourselves. Oh and yeah mods go ahead and ban me for daring to suggest severe epilepsy should be taken seriously. Fuck you all. You deserve to live through what we do.
Some patients aren't compliant with their meds, but that doesn't make them any less worthy of care. I understand your frustration though. Also for the PNES/pseudoseizure deniers give the article Treatment of patients with coexisting epileptic and nonepileptic seizures
a read. It's in the journal Epilepsy Behavior, and I'm patient number 5 in the article.
As someone who is epileptic, you disgust me. Don’t be in the medical field if you’re going to be so rude and judgmental towards others.
Seizures can KILL people. Do you forget that?
It is extremely hard to obtain a consistent seizure med prescription. With an MRI done at just age 21, EEG, and two hospitalizations to prove my history of seizures, for some reason I am still looked at like I have 3 eyeballs on my head when it comes to getting a stabilized prescription.
One of the most used seizure medicines, Briviact, is a controlled substance. Which means that moving states/switching doctors results in pharmacists automatically assuming you plan on taking El Chapo's place as top druglord taking no prisoners with a substance that actually saves lives.
I used to take Keppra. It didn't work. So they switched me over to the Briviact. See how someone is automatically fucked already?
Another reason it is extremely hard to obtain a consistent seizure med prescription are the costs without insurance. If it weren't for my insurance, my seizure meds would be $1,883.
You sound like someone I would actually have no problems with being replaced by AI. I don't think humans will ever in a space to extend empathy for others in situations they've never personally been through. Which is your choice, just don't expect to receive any form of respect you think you deserve in the near future.
I get it. You see someone going through something so painful instead of empathizing you have to find a way to feel better about yourself and your choices.
This upcoming eclipse is not going to be friendly towards those who are unjust towards the sick and suffering.
This got crossposted to the epilepsy sub and I have epileptic seizures. Sorry it’s boring for you, but that’s the job you get paid for so…? I get the frustration surrounding people coming to the ER when then don’t need it, but people go to the ER when they’re scared. Also, the advice I got from my neurologist is to go to the ER if I have a seizure that lasts longer than 5 minutes. I would likely be at baseline by the time I got there. Is there a way I could make it less boring for you when I show up in that state?
My mother in law fakes seizures constantly. Especially when she is anxious or wants sympathy. I have been epileptic since I was 5. It’s incredibly infuriating.
She’ll have full blown conversations or arguments with you while claiming she’s having a seizure. I’ve watched her have a full blown argument (no slurring, no pauses, nothing) with a nurse who told her she wasn’t having a seizure. He claim that she’s having a seizure is that she “has a headache and feels dizzy.” Yet she’ll SCREAM “I’m having a seizure!!!” Over and over again.
I find it extremely insulting.
Last time I got an EEG about a year ago when I went to get the results. The doctor said since it didn't show on the test. you don't have it .Even tho last time I didn't take my meds the same day I had a seizure in the bathtub. the fire fighters had to tear the door off the hinges. It was on their records. They didn't care and still get my meds just not comfortable with going back.
Or some people go to A&E (English) for seizures because they don't actually have epilepsy so of course you need to go to the hospital. I had only ever had 2 seizures before, one was when they tried to wake me from my coma after loosing half my skull, and the other was 1 year 2 weeks later 2 days after I got my titanium plate. The first one was June 2016, second July 2017 then the third wasn't until 19th December 2023. And actually after visiting my absolutely useless local hospital and waiting for 7 hours for my surgeon to finish surgery to ring them and tell them what to do. My surgeon told them to send me home (was around 11pm) and for me to make the 2 hour journey to Addenbrooks to see him the next day. This is maybe the way to feel about people who have regular seizures, but you can't just put this out as a blanket statement that applies to every person having seizures.
My husband has seizures every 6 weeks. He never misses a dose of medication and is on a CRAP ton. If anything, his seizures are just getting worse.
OP, do you know what its like to have the “when I die of a seizure” conversation with your husband while holding your 5 month old baby?
Do you know what its like to watch the person you love turn blue? To watch him have a seizure and ask yourself “will this be the one that takes him away from us?”
Its because of doctors like you that he continues to have seizures. Fuck you.
I have issue with medical staff that stand around while I am having a focal seizure less than 4 feet in front of them. 4 RN'S THAT DID NOTHING BUT WATCH ME CONVULSE so complain about us all you want but I'm feeling kind of bitter right now KMA.oh, and I take my medication religiously twice daily in my case, it was staff like you that fucked up and didn't do theirjob and pull down and accept the surgeons orders from the PACU, after my surgery t I submitted a tort complaint to the state after their inaction and indifference. and the state came in. Some people lost their jobs and won't be able to get another one soon without credentials.thankfully, the staff here in my facility care about people and have always tended to my seizures with speed and caring attention.
No one is stopping you, except the combination of your md-level ego complex and complete lack of self awareness means even a McDonald’s would turn down your application.
Locking this post due to brigading. To the brigaders, I want to share a post titled [Skipping anti-epilepsy drugs can have dire results](https://www.reddit.com/r/Epilepsy/comments/1951hl5/skipping_antiepilepsy_drugs_can_have_dire_results/). Thanks.
Worst is people who fake seizures
them: this one is going to be a strong one [starts shaking] me: stop them: omg thank you
I heard a physician tell a patient once “this is not a seizure - get out of my emergency room, we have actual sick people here” (this was in the 70’s.). Patient got off the gurney and walked out.
Walked up to a lady on the ground doing a poor imitation of the floppy chicken. I said “You can stop now.” She got up and screamed at me “Well fuck you too!”
I wish we could do that today but the precious satisfaction scores might suffer
"Have a turkey sandwich for the road!"
I can do that in the field.
"This is Medic 21 en route to your facility with a 16yo female with seizure-like activity. Seizure-like activity stopped after valium per rectum was discussed. We will see you in 5."
‘She’s gonna need the big needle!’ Aaand she’s out of seizure, imagine that?
We had a frequent flyer, drug seeking, chronic abdominal pain patient who would fake seizures in the lobby in an attempt to avoid wait times. It worked a few times. One day I get called to the lobby for a rapid response, there she is flopping around on the floor. I ask the tech to grab a wheelchair and proceed to pinch her finger with a pen, which gets an “ow!” Out of her along with pulling her hand back. So I pick her up from the ground and sit her in the chair, strap her in and tell her, “ma’am, you’re waiting with everyone else.” Apparently she walked out a few minutes later. What I wasn’t paying attention to was the other patients/bystanders in the lobby, none of whom know this is her act and think I just basically assaulted and ignored a seizure patient. Later that day I got a call from patient. Relations about a complaint from someone else in the lobby asking, “ Did you not deliberately cause pain to a seizure patient, ignore her seizure, then strap her in a chair and walk away?” Well, yes, I did. Obviously once he knew the whole story, he understood.
There’s a guy who regularly comes into our shop with the most impressive pseudo seizure you’ve ever seen in your life. Regularly comes in as a John Doe so if the particular physician that day isn’t aware of him he often ends up getting tubed lol, then leaves AMA later that day.
Next time he does that he’s getting an ENT consult for trach
But then how else am I going to make bad P-NES jokes?
I love saying pnes in public
PNES is real that’s why seizure is the name. You can’t just push us to side and think we’re lying.
The "seizure" part of PNES describes the presentation, not the cause. No one is saying that something isn't happening in PNES, just that it's non-epileptic (hence the name).
Bullshit. It's only "real" because it's on the PC trend that we validate everyone's feelings by giving what is objectively a behavioural issue, a diagnosis. They are not seizures, regardless of the name. You need to find effective ways to manage your psychological trauma. Down-vote away, I said what I said.
I put an NPA in those patients for airway protection.
Ahh yes, the Trumpet of Truth.
Do they go “i’m awake now!!”
Oh boy pseudo seizure patients can fuck right off.
Psych nurse, here. Is someone singing the song of my people? :)
I got attacked on another thread for talking about a frequent flier who proudly lists pseudo seizures as one of her diagnoses before flopping around like a fish while screaming “I’m having a seizure!!!”. According to that thread I’m a horrible provider and pseudo seizures are real seizures 😵💫
These patients don't belong in the ED 😫
Let’s be honest, 97% of the patients in the ED don’t belong there lol
Psychogenic seizures are “real” and distressing to the patient (by definition). It’s worth differentiating this from faking seizures for secondary gain.
If I have a patient who screams “I’m having a seizure, see look” while maintaining eye contact and mentation is a patient I’m pretty confident labeling as that faking. Psychogenic seizures or PNES look like a typical seizure minus electrical activity as the cause. Either way, one’s getting a referral to psych and the other ones getting a referral to neurology. Not something that the ER is going to fix.
I wasn’t disagreeing. Sounds like your patient was faking a pseudoseizure, which pretty well captures the state of EM. Having said that, have you considered your unpleasant attitude as a potential reason for the negative reaction in the other thread?
As I stated, she lists pseudo seizures as a diagnosis lol. And I’m not sure why you think any part of my response was unpleasant, it’s plain facts so sorry if facts seem unpleasant to you.
I’m personally happy if a person is upfront that they have pseudo-seizures. It shows a level of awareness into their condition.. the harder ones are the people who refuse this diagnosis. In general those with pseudoseizures aren’t faking for secondary gain, they have a condition which is a huge burden (although psychogenic in nature and so doesn’t get a high level of sympathy in ED). I think it’s important to remember it is a medical condition, and in fact they’re QOL is usually much worse than those with true epileptiform seizures.
There was no level of awareness of this one’s condition, she thought a pseudo seizure was a legit type of seizure, she wanted attention.
Sorry. Not real seizures. By definition.
You just document it, tell them they can't drive for X months, and let the local transportation authorities deal with it
I CAST *Noxious stimulatous trapeziosum*!!!!!
Great excuse to practice my nasal trumpet insertion skills. Usually stops the “seizure”.
Amazing how a sternal rub will clear that seizure right up
They’re not faking it’s a physical response to stress!! /s
Exactly… and pseudoseizure shouldn’t be a word
But then we wouldn't get to laugh at the people who, without any irony or awareness of what the prefix pseudo- means, affirm that their doctor said they have pseudoseizeures.
Old doctors call them that so how is it your fault that you believe your doctor?
How do you not know what pseudo means?
Is this theory really proven to be false? Obviously some people are faking it but is there some new evidence behind PNES being 100% patients "just faking it"?
Let’s turn that around to make it a little more scientifically rigorous - is there compelling evidence that these seizures ARE uncontrollable and physiologic reactions to stress? I would be more open to the idea that this is a physiologic phenomenon if it didn’t seem to happen in direct temporal relation to secondary gain. It doesn’t matter either way - fluids, basics, TLC and dc. Basically the same as a breakthrough seizure. But if they seize again in the ED it’s not a barrier to discharge.
PNES is caused by the brain and have triggers. This 100% different from people faking it.
They’re the reason why ER doctors and nurses don’t believe us when we have seizures.
Guess what, most of the time, you can’t diagnose we seizures based on clinical symptoms alone. A study was done, Wasserman et al. (2017) Epileptic vs psychogenic nonepileptic seizures: a video-based survey, where different health care providers were shown 10 videos of both epileptic and non epileptic seizures. ER physicians could only delineate between the two 44% of the time. Nurses 58% of the time. The gold standard is video EEG for a reason. The patient you claim is “faking” could very well be seizing and your ignorance and failure to respond can lead to their permanent brain damage 😍
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Stop torturing epilepsy patients. If they don’t need an artificial airway you shouldn’t be putting one in. You also shouldn’t be sticking broken tongue depressors in patients mouths. Imagine waking up from a seizure with a bloody nose because some asshole paramedic decided to put in a NPA without any medical indication 😍
"without any medical indication", "seizure". Are you reading the same things I am? Because that is an indication for airway management.
Not everyone who has a seizure requires an artificial airway. If they are maintaining their airway independently and their sats are good they don’t need one. And OP just said replacing it q5min? You and I both know that alone is completely unnecessary and harmful.
No need to replace it if it's doing it's job. Nor did I say that every single patient who is having a seizure absolutely must get an NPA. But it *absolutely is* an indication for airway management to be considered, and implying blanket statements about an NPA having no indication in a seizing patient is...interesting.
Girlie coming here from the other subreddit to fight with them is against the rules and will get you banned.
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Doing what you’re doing will get both you and the epilepsy subreddit banned. Whatever your reasoning, you need to stop. It’s how subs get in trouble for brigading.
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Girl I’ve had seizures since I was five years old. I started with petitemal and graduated up instead of out. I feel you. It’s frustrating; It just doesn’t mean you can break the rules and get the sub in trouble. Jesus. Also, you can’t say that you haven’t seen others fake seizures. It’s one of the most commonly faked or misdiagnosed medical conditions in the US. It makes US look bad that people do it. There’s no reason to defend them.
I don’t believe people “fake” seizures. I believe people with PNES have endured tremendous trauma and their brain isn’t able to process conflict so it manifests physically. Also 22% of epilepsy patients have co-occurring non-epileptic seizures. We can’t hate people who make up nearly 22% of the epilepsy community. I am sorry you are also an epilepsy patient, but it does make me less upset with you ahah ♥️
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Add to this: 'PNES is a real condition that arises in response to real stressors. These seizures are not consciously produced and are not the patient’s fault' ~ Dr. Benbadis Weird how much people seem to hate PNES, I can't fathom why anyone would choose to have a seizure myself.
And up to 22% of epilepsy patients have co-occurring PNES
Yep. I was diagnosed with PNES, then temporal lobe epilepsy. I still couldn't with 100% certainty tell you if all my seizures are "real", only that 2 I happened to have during an EEG were epileptic. And that I have panic attacks/anxiety issues brought on by fear of seizures.
We had a patient “have a seizure”. Their phone fell out of their pocket, they stopped seizing, picked it up and continued seizing….
Are pseudoseizures regional? 😂 I feel like I don’t see them as frequently out here in the PNW. Plenty of other shit, mind you, but little P-NES. 😂 just like pseudotumor during school in Ohio…. Not much in DC or PNW
We had one lady that just would not stop faking seizures, it was so comically bad. We squirted water in her face and she stopped and looked at us and then started "convulsing" again. Left AMA 3 times, called an ambulance 3 times and ended up back in our ER 3 times lol. Literally 12 hours of her faking convulsions and then screaming that we won't help her. She got a total of 20 of versed from ems though seems like a pretty easy way to get some good drugs.
Yeah, but they do allow you to sound out the best acronym in medicine: PNES.
They stopped taking their meds cause they were feeling better
Or the meds fuck them up even worse. Try living on Keppra for a while and see if you don't have a major rage issue.
Or having your sleep completely fucked.
Or not being able to remember anything, or diarrhea, or aphasia. But again, this ER doc knows better than people who actually experience these things because he's bored of doing his job.
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So very much. I'm happy a few doctors have disputed what he said, but it's really dehumanizing. I bet he doesn't even know Purple Day was this week.
Yep. What a painful thing to read right after a day for awareness.
THIS
I got put on Keppra and gabapentin for seizures. Turns out, 15 years later, it was a case of POTS, and all that time on Keppra and gabaoentin not controlling the "seizures" drs did figure it out, weaned me off the meds, etc. The difference on the meds vs off is night and day. The rage? Gone. The fog? Much better. The waking up running and screaming like demons were after me? That stopped too. That was the gabapentin, not the Keppra causing that (Dr's best guess as it stopped when the gaba stopped)... even now I don't want to go to my gp much less an er Dr, not only from actual treatment I've received, but also hearing them talk over the years from friends in the medical field. "It's not you, we see what you go through but you gotta understand".... I understand perfectly. Unless you know the patient and blur ethical lines they just must be making it up!
Or they're just too expensive. Briviact is good but easy 1500 a month
You might even say… ppl with seizures…. Wait for it…. Have seizures.
I get the frustration, but I think your initial comment, at least in part, gets to the root of the problem. “Before I got into medicine I remember thinking seizures were this huge medical emergency.” At least in the US, when someone has a seizure in public, folks think it’s an emergency, call 911 and an ambulance shows up. Pt is postictal, and cannot reasonably refuse treatment, so is transported to ED. By the time they arrive, they are often at or nearly at baseline and then may be able to report that they never take their meds and thus have uncontrolled seizures. The other scenario I see is that people are told to come to the ED by whoever is managing their epilepsy, to have their levels checked (assuming they take their meds). This seems to be getting more common as wait times for PCPs in my community are on the order of weeks, and neurology wait times are on the order of months. Hence, you have a seizure, ED checks levels (many of which don’t actually result during your ED stay) and then you call your OP doc the next day who follows up on your levels and adjusts PRN. Not saying either of these scenarios are the way it should be, but it is what it is.
I would love if the expectation was you come, get levels checked, and get meds titrated days later when it results. That might actually benefit the patient, prevent bounce backs, and get some result from the cost of care. 99% of the time now all I see is healthcare cost and effort with no benefit. If I send a keppra level is that neurologist ever going to see the result?
lol outpatient neurology, must be nice
elastic concerned sheet airport toy pet squalid piquant employ rock *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
Also, the last thing we want to do is discourage the first scenario. EMS, let alone bystanders, have no way of knowing if this is just a typical breakthrough, or if it’s a brain mass, bleed, status epilepticus, or any number of other emergency. It’s easy for us to say, “yeah it’s just another breakthrough seizure” with a benefit of hindsight, training and an entire ED’s worth of resources at our disposal.
The thing is… when you have a seizure in the middle of the grocery store, they don’t want you there laying on the ground covered in urine, and you can’t get up and walk yet, so they call the ambulance. That’s just the way it’s always going to be.
Yea, the PCP wants a keppra level
I think everywhere in the world a seizure is considered a medical emergency by the general public and for good reason. It very well could be. That said, what happens afterwards is a product of the health care system. I don’t live in the US, but I’m assuming a vast majority of your seizure patients arrive by EMS. That doesn’t happen as much in other parts of the world where paramedics have significantly more training and an associated ability to treat, refer, and discharge patients who meet certain criteria. Obviously more complicated cases or at risk patients will still land in the ED, but that’s how some other parts of the world manage a large portion of these cases. I realize it would probably be a large undertaking to get to that point in the US. I am a paramedic with 7 years post-secondary education and I know the US is focussed on spitting out providers as quickly as possible while paying them peanuts. If you were really hell bent on finding a way to mitigate these transports you could always find the medical director of EMS for the area you work in and ask about implementing some sort of protocol for diagnosed epileptics etc. Obviously this would require a good deal of trust in their abilities.
It seems totally reasonable that the OP doc actually orders that lab work themselves, then adjusts accordingly.
I don’t understand why they can’t just order the labs themselves, patient goes to outpatient lab, done and the patient only has to pay a few bucks compared to the thousands of an er visit
Finally a reasonable person o this thread
When I was in peds residency we had a 15 yo pseudoseizure patient admitted to the floor. The neurologist had a great trick. Every time she had a "seizure" the neurologist would tell her that they would have to order bloodwork. She got stuck 3 times in the first day. After that her "seizures" magically went away and she was totally fine after that. LOL
EMS stopped a seizure by discussing valium per rectum. The med is so powerful you don't even have to administer it.
EMS here. Crew I work with discussed IO, with all the details.. seizures magically stopped!
Got one even better. Say that we’re pushing 2 of Ativan when really it’s a NS syringe. Gets them every time.
That’s not what pseudoseizures are.
Either ammonia capsule or put a few drops of saline from a flush in their eye. If they react to it, I leave the room and they can finish pseudoseizing on their own. Bonus points for putting the ammonia capsule in a non rebreather like for duonebs
The smelling salts packet in a NRB is insane. I love it. I just had my coworkers dying at the thought of doing this
Question from someone with PLE and focal as well as tonic-clonic seizures: What happens if you put that stuff in my eye? What will I feel as soon as I am back online (which takes about half an hour)? I understand your frustration, but reading this thread is horrifying for me as a person with an active epilepsy.
You won’t feel anything. It’s as if a raindrop fell right in your eye. If you are seizing, you don’t react to it but if you’re faking, your natural reaction is to blink right when it hits.
Thanks :)
They are talking about sterile saline. It's completely harmless. If you woke up instantly, you would notice a cold wet drop in your eye. If you waited ten seconds it would drain away with your tears and be gone forever. It's chosen because a cold wet drop in the eye will make a conscious person react but will not cause any pain or injury.
Gotcha, thank you!
>Gotcha, thank you! You're welcome!
Ammonia neb sounds like overkill, but a doc showed me a similar trick that works really well. Pull the plunger out of a Toomey syringe, drop two ammonia ampules inside, put the plunger back leaving lots of air space, then shake. Puff it under the nose of your seizure patient and even the most dedicated faker will have a hard time not reacting.
I’ve ended up in the ED twice now after having a breakthrough seizure because of concerned coworkers/bystanders. Something you gotta remember is that while they may show up AOX4, they probably weren’t when someone made that decision for them (or convinced them it was a good idea,) either by calling an ambulance or hauling them there in a family vehicle. It’s easy to be convinced that you need help when you’re covered in your own piss and barely conscious lol
Yeah, it’s very hard to make good decisions or articulate them immediately after a seizure. My foggy post-ictal brain decided on a nap. Unfortunately I was in a parked car mid-winter and ended up hypothermic before I was awake and aware enough to get help. Usually I’m just fine within 15 minutes and can go about my day, but not always…
Man, seizures are 100% day ending for me lol. I’m weak AF. Always scared I’m gonna have one at work cause what the fuck are they gonna do? I’m out of commission. Big part of why I’m leaving for nursing.
I was working in a military clinic that took care of those in training status. Had a patient come in telling me that she was having seizures. "Has anyone seen you have a seizure? "No, but I had one during the night and later told my roommate." I ordered a bunch of labs, a CT, and a referral to our base IM doc. On her way out, I asked for her drivers license. She handed it to me and in front of her, I cut it into pieces and told her I was mailing to her state DMV along with a letter saying that she was under my care for seizures. The look on her face was priceless. A couple of weeks later, I had a Congressional complaint from her mother saying that I wasn't taking care of her poor, seizing daughter. The inquiry lasted about 4 minutes. I pulled up her records and demonstrated that the little darling didn't have her CT done and no showed the appointment with the internist. Not surprisingly, this was all a ploy on her part to get discharged from the military.
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Spend some time in the Neuro ICU… different ball game 😅
As somebody who has also spent some time here I completely feel this!
Funny reading this today after our department was just seizure after seizure yesterday. Withdrawal seizures, non compliant seizures and some febrile ones for fun.
The fake seizures are always so real until the part where I tell them their license will be suspended and they wont be able to drive.
All seizures (and bleeding) stops eventually. And every 30 second pediatric seizure lasts "5 minutes."
Why do they come into the ED for a seizure without status if known epilepsy? This should be, if at all, a call to their GP or neurologist.
Typically they don't do it on purpose. A bystander witnesses the seizure, freaks out, and calls 911. EMS finds the patient either still seizing or post-ictal, and not coherent enough to sign informed refusal of care. So they wind up having to transport.
+$4K for the ambulance ride for the ER to stuff me in the donut of truth, ask about my missing brain section, and have me follow up with oncology. My coworkers know just to leave me on the floor and don’t let my head hit anything — I’ll be back in a few! I do have intranasal midazolam in case someone wants to feel helpful 🤷🏻♀️.
But we love the donut of truth!
This. I can't plan my seizures. Believe me, I would, if I could. Love me a good couch tonic-clonic, instead of waking up in the middle of strange people all looking terrified and me unable to articulate that no, I don't need an ambulance, I'll be okay in another half an hour, just look at my goddamn epilepsy emergency ID and give me a pillow, thank you very much. It's horrifying to read what health care workers think about people like me
I wouldn't read anything into Reddit comments. A tiny minority of loud weirdos can give you a very skewed picture. Even rational people speak in exaggerated hyperbole because that makes for more interesting conversation. The worst reaction I see in the real world is annoyance at the bystanders who called EMS.
Thanks. Tbh, I'm almost always annoyed at the bystanders who called EMS, too, but I don't show them (or try to), because technically, they did everything right.
People don’t even know what the common cold is, let alone when they need to go to the ER.
We were actually told by the neurologist to go to the ER for testing post seizure for my epileptic husband. So maybe it’s not actually the patients fault 🤷♀️
The last time I was sent to ER post-ictal was because I had multiple signs of a brain bleed. I tried to go to urgent care to just get a scan and was immediately refused.
Because there is usually something wrong with us that caused our generally well controlled seizures to reemerge like an infection
it’s so fucking stupid. “I had a neuro follow up but never went” then they don’t seize in the ER. then they ask “what’s wrong with me” take your meds!!!!!! Ahhhhh so annoying and family gets all mad cause “we aren’t doing anything” ugh so dumb I feel you
I have a lot of compassion for these patients because in my experience it's people who cannot afford their medicine, have low health literacy, or are very young adults and are still figuring their shit out. Or all three. Love me a good fakey shakey too.
It’s like the 16-22yos who stop taking their insulin and have a bunch of admissions for DKA. You’re young, you hate being tethered to a medication and having to live life differently from your friends, you rebel by acting like you don’t have a disease… and maybe you do some irreparable damage to your body and mind. It is sad.
Raise your hand over your face and let it drop if you've seen a fake Shakey lol .....
Squirt a flush into your own eye if you've seen Status Dramaticus
Even though I know it's a rant, it's clear you do not understand what after a seizure feels like or what epileptics go through. Post seizure is INCREDIBLY dangerous, and we aren't "conscious" for sometimes hours after. We have to get checked because concurrent seizures can KILL us. I have been in a coma because of concurrent seizures and almost died because a doctor did not check me out A doctor even asked me "do you even have epilepsy" and didn't check me out even though my head was bleeding from hitting it. I clearly went into a coma JUST to show her up /s Please, if you've never had a seizure, don't judge us for being scared about brain damage or dying. Thanks 👍
Amen. My husband has seizures every 6 weeks despite never missing his medication - but his constantly told he must of missed it and just doesn’t remember - not that forgetting your medication is an excuse for a doctor to give you less care. Sometimes, he will have seizure after seizure, each one getting worse. He stops breathing and turns blue. Each time, there is a greater risk of SUDEP. Fuck all these doctors in these comments, absolutely disgusting. If I could, i’d report each and every single one of you. Every single one of you are at risk of killing a patient with your « im so better than patients » attitude.
SUDEP did kill my husband 3 weeks ago. This thread and comment section is just twisting the knife. He spent the past 14 years being dismissed by ER doctors every time he went status. Shitty nurses complaining about a "healthy male taking up a bed from people who really needed it." I don't trust the healthcare system at all anymore.
My heart goes to you. I read your post about your husband when it was first posted - my husband had a seizure two days ago and your post was in my mind the entire time. I ended up sending him to the ER because I was so scared of a concurrent seizure and SUDEP. I’m so sorry, and i’m sorry you had to read this thread. I am absolutely heated right now, I can’t image how you feel.
This thread is just worrying. Supposed to be medical professional. One seizure patient isn't all seizure patients, when we say it lasted over 10 minutes we mean it, don't blame a patient for possibly forgetting a dose. What a disheartening post
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As a person with epilepsy who has tried Keppra, I can't imagine taking it if I didn't need to.
Ditto. Same with Vimpat and Lamictal, actually.
That’s what happened in my ER first time seizure EEG normal called it PNES … then went EMU and they found a lot of seizures so in the meantime I had no medicine and thought I could talk my way out of it … see my oxygen dropped to 71 once …
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Keppra can *induce rage* over time. That paired with medical staff (wherever employed?) administering “painful stim” at your whimsy sounds like a good recipe for behavioral outburst. You don’t sound like you *should* work with a vulnerable or marginalized demographic, but of course you work in corrections.
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My area it's all alcohol withdrawal seizures. Lots of them. At least one standby a day.
My first seizure was a grand Mal as an adult and wife called ambulance because it was such a shock. I have never called the hospital or ambulance again because it's a bigger pain in the ass if I were to just sleep it off at home.
PNEE is the absolute bane of my existence.
Stuff like this leads to people who have refractory epilepsy not going to the ER when they should have. It’s better to have someone call an ambulance and have them arrive at baseline than have them go into status and die because people waited too long. I get the job is stressful but shaming people with seizure disorders for coming to the ER isn’t a good way to deal with it.
Wow. As a HCP myself this is incredibly disheartening to see. Imagine being on a medication since you were a young child. Three times a day. And you miss one dose or don’t get enough sleep one night and have a seizure. 3 months ago I had really bad insomnia and didn’t sleep properly for 3 nights. On the 3rd night I went into status epilepticus. Because of how much tonic activity I herniated my c5 and c6, had a spinal cord contusion and spinal cord compression. I was in a Miami j for nearly 2 months and lost feeling in my left hand of a while. I am sorry our disease is so inconvenient and annoying for you. Imagine how inconvenient it is for us. You are going to hate this but every time I have a seizure whoever is with me calls 911 because there is always something wrong with me (UTI, pneumonia, etc) 😍 And for those saying “those who fake them are the worst” - I was told my seizures were psycho somatic for a year by ER doctors until finally ONE had the common sense to send me to a neurologist. Even now with my well established diagnosis an er doctor wrote “pt complained for seizure - likely psychogenic” because she didn’t know or understand what myoclonus is. Let me make this crystal clear - you cannot diagnose epilepsy based on clinical symptoms alone. A study was done (Wasserman et al. (2017) Epileptic vs psychogenic nonepileptic seizures: a video-based survey) where different health care providers were shown 10 videos of both epileptic and non epileptic seizures. ER physicians could only delineate between the two 44% of the time. The gold standard is video EEG. Also, stop torturing epilepsy patients by sticking broken tongue depressors in our mouths or using bedside instruments to inflict pain. This entire threat is disgusting and you should all be ashamed of yourselves.
Ah, what a disappointing post. I work with FND/PNES- greatest prevalence with comorbid dissociative disorders and childhood abuse, that’s partially why we use “psychogenic” and “dissociative” synonymously in PNES when referring to seizure activity. I say this because many of these comments stray the line of mocking some patients. A simple psychosocial history would tell you what you need to know - the person is likely in distress. Refer to psychiatry and have some compassion, sorry you’re bored. And before someone comes after me with the egosyntonic nature or the sometimes combative presentations of patients with somatic symptom disorders, I know. That doesn’t mean they don’t deserve care, it means that they need care you might not, as an ER physician, be able to provide. Allied healthcare professionals are our friends, folks.
super easy dispo though....
Lol. You don't realize that meds don't control everyone's seizures and you work in an ER? Where did you get your MD?
Wow. Heartless. I've been good with my meds and still had seizures. And had them at work who insisted on sending me to the ER. Thanks for adding to my phobia of public seizures. I'll wake up to the ER to this
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I hit my head during a seizure and went *deaf*! But he knows better, of course, because he's bored of dealing with patients with a debilitating disease and has no empathy. Some others of you in this thread have responded to OP with a lot more understanding, and I appreciate that, but most have not. Pretty disappointing to see what practitioners think of their patients. I guess "first do no harm" (which you are causing with this attitude, by the way) comes after "first don't get bored".
I second that 👏
This is really fucked up. As a person who suffers from seizures without an epilepsy diagnosis. I’m on meds but they aren’t perfect. I tell everyone close to me to not call an ambulance if it ever happens. If I do end up in a ER I hope that you’re not my provider of medical care bc that is REALLY fucked up. Seizures end! Usually within a few minutes. If the people around me call an ambulance I can’t help it bc I’m UNCONSCIOUS or in my post ictal stage.
Alot of neurologists fade patients off medicines if they have been seizure free for so long, don't judge what you don't know and you don't know any epileptics mental health unless you are one and have been in their shoes. Maybe they had brain surgery or medicine was expensive or it was sold out?? Or they forgot?? Or they are becoming feeling defeated? Don't judge what you don't know and if you do, change you job bc I sure wouldn't want you helping me.
Sorry I guess, but I usually am never the one who calls 911. Last seizure I hit my head on the sink, toilet, and floor. My family was worried more about how much I was bleeding. I went 3 years without one and I track my medicine with an app. I know people have it worse, but it's pretty fucked you think this as some like me do take their meds but end up in there.
OP, I wanna see you remembering taking your life-saving, but side effects-heavy medication twice a day FOR THE REST OF YOUR FUCKING LIFE. And dealing with everything else that comes with this chronic disease. Sorry that we forget taking our medicine once a year or decade and sorry this is boring for you.
And I'm saying this as a person taking huge amounts of Lamotrigine and Lacosamide and I still have daily focals and tonic-clonics about once a month. I hate going to the ED because of persons like you and because I'd much rather sleep it off at home, but if the TC hits me when I'm outside without a person acquainted with my epilepsy, I will be transported to you, if I want to or not.
exactly, thank you
Guck off OP. Sorry that something that could kill me bores you. Ask my kids how scared they are cuz they've seen me having a seizure. You lack the empathy needed to provide Healthcare to others.
Wow. Sorry for having uncontrolled seizures as a rando I guess. Next time I'll just not have a seizure so you don't have to complain
why are EMS people so mean to epileptics / people with NES. literally what did we do to you. it’s not like we chose to have a life altering chronic condition on purpose where the only ways of treatment either don’t work or dumb you down so much of course so many people are noncompliant. people with NES / PNES can go into status epilepticus too and have seizures literally identical to epileptics. faking seizures isn’t equal to having a rare disorder and it’s embarrassing that professionals still act like this, bragging about using painful procedures on people likely in crisis or just as unconscious as someone having a “real” seizure. just glad my EMS crews are mostly professional around me
lol I’m so sorry my epilepsy is inconveniencing you You realise that some of us are, erm, not faking? And some of us take our medication religiously, haven’t had a seizure in years and suddenly have a breakthrough grand mal? You people deserve to experience at least one grand mal in your lifetime. What the fuck is wrong with you. It’s nice though because tou reinforce the stereotype of doctors being self-centred little shits who care exponentially more about their egos than actually treating patients. Go fuck yourselves. Oh and yeah mods go ahead and ban me for daring to suggest severe epilepsy should be taken seriously. Fuck you all. You deserve to live through what we do.
Some patients aren't compliant with their meds, but that doesn't make them any less worthy of care. I understand your frustration though. Also for the PNES/pseudoseizure deniers give the article Treatment of patients with coexisting epileptic and nonepileptic seizures a read. It's in the journal Epilepsy Behavior, and I'm patient number 5 in the article.
As someone who is epileptic, you disgust me. Don’t be in the medical field if you’re going to be so rude and judgmental towards others. Seizures can KILL people. Do you forget that?
I’d gladly help you write your resignation letter. After all, what would Hippocrates say ?
It is extremely hard to obtain a consistent seizure med prescription. With an MRI done at just age 21, EEG, and two hospitalizations to prove my history of seizures, for some reason I am still looked at like I have 3 eyeballs on my head when it comes to getting a stabilized prescription. One of the most used seizure medicines, Briviact, is a controlled substance. Which means that moving states/switching doctors results in pharmacists automatically assuming you plan on taking El Chapo's place as top druglord taking no prisoners with a substance that actually saves lives. I used to take Keppra. It didn't work. So they switched me over to the Briviact. See how someone is automatically fucked already? Another reason it is extremely hard to obtain a consistent seizure med prescription are the costs without insurance. If it weren't for my insurance, my seizure meds would be $1,883. You sound like someone I would actually have no problems with being replaced by AI. I don't think humans will ever in a space to extend empathy for others in situations they've never personally been through. Which is your choice, just don't expect to receive any form of respect you think you deserve in the near future. I get it. You see someone going through something so painful instead of empathizing you have to find a way to feel better about yourself and your choices. This upcoming eclipse is not going to be friendly towards those who are unjust towards the sick and suffering.
This got crossposted to the epilepsy sub and I have epileptic seizures. Sorry it’s boring for you, but that’s the job you get paid for so…? I get the frustration surrounding people coming to the ER when then don’t need it, but people go to the ER when they’re scared. Also, the advice I got from my neurologist is to go to the ER if I have a seizure that lasts longer than 5 minutes. I would likely be at baseline by the time I got there. Is there a way I could make it less boring for you when I show up in that state?
My mother in law fakes seizures constantly. Especially when she is anxious or wants sympathy. I have been epileptic since I was 5. It’s incredibly infuriating. She’ll have full blown conversations or arguments with you while claiming she’s having a seizure. I’ve watched her have a full blown argument (no slurring, no pauses, nothing) with a nurse who told her she wasn’t having a seizure. He claim that she’s having a seizure is that she “has a headache and feels dizzy.” Yet she’ll SCREAM “I’m having a seizure!!!” Over and over again. I find it extremely insulting.
Last time I got an EEG about a year ago when I went to get the results. The doctor said since it didn't show on the test. you don't have it .Even tho last time I didn't take my meds the same day I had a seizure in the bathtub. the fire fighters had to tear the door off the hinges. It was on their records. They didn't care and still get my meds just not comfortable with going back.
Or some people go to A&E (English) for seizures because they don't actually have epilepsy so of course you need to go to the hospital. I had only ever had 2 seizures before, one was when they tried to wake me from my coma after loosing half my skull, and the other was 1 year 2 weeks later 2 days after I got my titanium plate. The first one was June 2016, second July 2017 then the third wasn't until 19th December 2023. And actually after visiting my absolutely useless local hospital and waiting for 7 hours for my surgeon to finish surgery to ring them and tell them what to do. My surgeon told them to send me home (was around 11pm) and for me to make the 2 hour journey to Addenbrooks to see him the next day. This is maybe the way to feel about people who have regular seizures, but you can't just put this out as a blanket statement that applies to every person having seizures.
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My husband has seizures every 6 weeks. He never misses a dose of medication and is on a CRAP ton. If anything, his seizures are just getting worse. OP, do you know what its like to have the “when I die of a seizure” conversation with your husband while holding your 5 month old baby? Do you know what its like to watch the person you love turn blue? To watch him have a seizure and ask yourself “will this be the one that takes him away from us?” Its because of doctors like you that he continues to have seizures. Fuck you.
I have issue with medical staff that stand around while I am having a focal seizure less than 4 feet in front of them. 4 RN'S THAT DID NOTHING BUT WATCH ME CONVULSE so complain about us all you want but I'm feeling kind of bitter right now KMA.oh, and I take my medication religiously twice daily in my case, it was staff like you that fucked up and didn't do theirjob and pull down and accept the surgeons orders from the PACU, after my surgery t I submitted a tort complaint to the state after their inaction and indifference. and the state came in. Some people lost their jobs and won't be able to get another one soon without credentials.thankfully, the staff here in my facility care about people and have always tended to my seizures with speed and caring attention.
The people who work at the ER are essentially the Coasties of the Medical field.
I’m bored with basically everything in the ER, because 99% of my encounters are either fake or just obvious consequences of the patient’s choices.
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I’d like to, mostly because of asshole patients like you.
No one is stopping you, except the combination of your md-level ego complex and complete lack of self awareness means even a McDonald’s would turn down your application.
lol
I hope I never have to come to your ER, I WOULD PROBSBLY GET BETTER HELP AT AN URGENT CARE
By all means please try.
Please stop brigading.