Pt faking seizure

Status
Not open for further replies.
I think many people with this "condition" are also suffering from other psychological/behavioral disorders which manifest itself in a variety of ways. It could be the tip of the ice berg so to speak.
 
Well... luckily after everything I've been through...

it doesn't really matter if my post doesn't sit well with you. I cannot force you to open your mind to possibilities to consider if you don't want to. Not all trauma survivors react the same... just because you don't have PNES doesn't mean that others don't.

If you truly want to learn more, then let me know and I'll be happy to answer any questions you may have, along with a panel of experts I can refer you to. But "calling BS" is not exactly the way to show me respect...

So... you choose... write me off as a BSer and go on with your career and life. OR consider that maybe you don't know everything about everything and it's worth pausing for just a moment... and LISTENING instead of judging.

Simba

usalsfyre said:
So are you having grand-mal activity or not? Because you're making no sense. If you are having generalized seizure activity how are you snapping out of it to refuse benzos? Assuming your activity and "disruptiveness" get worse with sedation you would stand a fair chance of ending up RSI'd on a propofol infusion on my truck. What's your suggested treatment regimen?


I'm calling BS. I was diagnosed with trauma related issues that have since been treated. I know a lot of others who have as well. It was never a blanket excuse for unacceptable behavior, which is almost what this seems like. Call me an ignorant, hateful healthcare provider if you must but your post just don't sit well with me.
Click to expand...
 
He did ask you multiple question that would enlighten him on your condition that you haven't responded to.
 
I am happy to answer any and all questions...

as long as they are asked with respect and I do not feel that I am completely wasting my time.

At least one person on the thread posted an image suggesting that I was posting to much, so I would prefer to take this discussion off-line for the benefit of those who are sincerely interested in learning about PNES.

I am frankly too ill and tired right this very moment to subject myself to the additional stress of people telling me I'm BSing them. If you sincerely want to learn more, I'm happy to answer ALL of your respectful questions that seem sincere... otherwise why waste my limited (energy, health and) time responding to insincere postings.

Anyone who IS interested can PM me and/or I will provide my professional e-mail address so they can corrrespond with me there.

Thanks again to those of you who (at least try to) ask question and listen with an open mind,

Simba

Aidey said:
He did ask you multiple question that would enlighten him on your condition that you haven't responded to.
Click to expand...
 
Believe me, he was being respectful.

You've posted numerous times saying medical professionals need to take PNES seriously and treat you properly, but when people ask what the proper treatment is in someone like you, who doesn't tolerate benzos you haven't provided an answer.

You've posted nearly 50 times in less than 24 hours and much of it has been redundant. If you want to be helpful than maybe answer some people's questions.
 
Dada Simba Detuned said:
it doesn't really matter if my post doesn't sit well with you. I cannot force you to open your mind to possibilities to consider if you don't want to. Not all trauma survivors react the same... just because you don't have PNES doesn't mean that others don't.
Click to expand...
I didn't go in with a closed mind. However the evidence presented is conflicting and unclear. One second you are having seizure activity so severe it causes injury. The next you are able to refuse benzodiazapines. This in and of itself is hugely contradictory.

Dada Simba Detuned said:
If you truly want to learn more, then let me know and I'll be happy to answer any questions you may have, along with a panel of experts I can refer you to. But "calling BS" is not exactly the way to show me respect...
Click to expand...
I asked...what's the treatment regimen? I really, really don't like performing a hazardous procedure on someone that might not need it, but seizures refractory to benzos tend to get treated one way.

Dada Simba Detuned said:
So... you choose... write me off as a BSer and go on with your career and life. OR consider that maybe you don't know everything about everything and it's worth pausing for just a moment... and LISTENING instead of judging.
Simba
Click to expand...
An approach that didn't start with calling us insensitive brutes might be a start to having people listen. Less blaming PNES and simply stating its a condition you're living with. Statements that make sense and are supported by evidence (not a bunch of random articles and youtube vids). All of these are ways to make me consider a position. At the moment you've pushed me the other direction.
 
Dada Simba Detuned said:
(though on at least one of these threads it was suggested that I should stop posting...)
Click to expand...

While I think you were somewhat rude to the emergency room physician who suggested he would try and alleviate someone's suffering with benzodiazepines, I would suggest that you continue posting. If your goal is to advocate for more compassionate care from first responders, you've found an appropriate forum.

However, if I am VERY triggered it is dangerous in many of the ways that any other seizure or involuntary motor condition may be.
Click to expand...

I guess the question I have, and it's not intended rudely, is, is it really? An epileptic can have intractable seizures, "status epilepticus", that can result in hypoxia, brain injury, hypercapnia, cardiac arrhythmia, and cardiovascular collapse. It's an acute and emergent life-threatening condition that requires immediate management, beginning with benzodiazepines.

While your PNES symptoms are probably terrifying, and very uncomfortable, once you've lowered yourself on to the ground are they really life-threatening? And if so, if you react paradoxically to benzodiazepines, what emergent treatment do you receive? What works for you?

I find this confusing, because you seem to be equating the two conditions, but I don't think they carry the same risks. If I'm misunderstanding this, please educate me.

For example, Thursday night I had a PNES after lowering myself to safely lie on a concrete patio. If no-one puts a pillow under my head... well you get the point.
Click to expand...

I think you might cut your head a little bit, and possibly concuss yourself, but I don't know how violent your symptoms are.

But... I can whack my head very hard, and my systolic pressure sometimes goes extremely high which can have dangerous consequences to my organs and otherwise.
Click to expand...

Out of curiosity, how high? Because acute hypertension causing end-organ damage is quite rare.

I hope this answers at least some of your question(s).
Click to expand...

To some degree, it does. I'm still a little confused as to what you want from first responders or the medical system in general.

If a paramedic, firefighter, nurse, etc. is saying to you "you're faking", or being rude, then I'd agree that this is inappropriate and unprofessional. If you're upset because someone with an tonic-clonic seizure is being evaluated before you in the emergency room, or that you're having to wait while patient's with potentially life-threatening illnesses are being seen first, then I think you might want to reevaluate your position.

I realise that I'm probably coming across as being blunt, or uncaring. I am and I'm not. I'm sorry you have an illness that is disabling you. Were you to call me at 911, I'd happily come and help you. Like I said earlier, I try not to judge the people I see in the back of my ambulance. Provided you treated me with respect, I'd do the same. If you were calm enough to tell me that benzodiazepines might worsen your condition, then I wouldn't give them to you. All the best.
 
It is true that many who have PENS may have other psych Dx...

There is some medical research that breaks down some of the co-morbidities, but since PNES are only recently recognized (many are mis-Dxd as epileptic for years before a PNES Dx) it hard to know the real facts yet. If you want, I'd be happy to forward some of the cites to you. Simba

schulz said:
I think many people with this "condition" are also suffering from other psychological/behavioral disorders which manifest itself in a variety of ways. It could be the tip of the ice berg so to speak.
Click to expand...
 
I'm not intending to be redundant

Your software does not allow me to delete or edit after a certain period of time (at least that I can figure out how to do). This is why I am suggesting that I correspond in another forum... I am trying to answer questions but at the same time being criticized for not using the media efficiently. So... I am offering to provide the information in a way that works better for everyone. If someone wants to take the time to organize all of the questions into one place without bouncing back and forth and delays and also criticizing me at the some time for posting too much... then I will do my best to answer the questions here. I cannot cognitively process all of the information and reply in the way in which you folks seem to want me to... I can't do any better, sorry! So... if you don't want me here, I'm gone! But if you DO then please try to help me to help you to understand better... rather than chastising me since my arrival here for my lack of cognitive sophistication in using your chat software. Thanks, Simba

Aidey said:
Believe me, he was being respectful.

You've posted numerous times saying medical professionals need to take PNES seriously and treat you properly, but when people ask what the proper treatment is in someone like you, who doesn't tolerate benzos you haven't provided an answer.

You've posted nearly 50 times in less than 24 hours and much of it has been redundant. If you want to be helpful than maybe answer some people's questions.
Click to expand...
 
Except it doesn't work better for everyone. Many people have viewed this thread, and people who come to this forum in the future will be able to read it. Insisting that you answer question via PM deprives all of these people of the information you would be sharing. As a peer advocate doesn't it make more sense to inform as many people as possible?

The forum software really isn't that complicated. It is true that there is a limit on how long you can edit a post, but that really shouldn't affect how you reply to posts. You've obviously figured out the quote button, so why not address each post individually. That way you only have to process a small amount of information at a time.
 
Last edited by a moderator:
Simba, this forum thrives on the give and take that happens in threaded discussions. If you're having difficulty with the forum, perhaps a solution would be to wait 60 minutes in between posts to read any replies and then frame up your response.
 
usalsfyre said:
So are you having grand-mal activity or not? Because you're making no sense. If you are having generalized seizure activity how are you snapping out of it to refuse benzos? Assuming your activity and "disruptiveness" get worse with sedation you would stand a fair chance of ending up RSI'd on a propofol infusion on my truck. What's your suggested treatment regimen?


I'm calling BS. I was diagnosed with trauma related issues that have since been treated. I know a lot of others who have as well. It was never a blanket excuse for unacceptable behavior, which is almost what this seems like. Call me an ignorant, hateful healthcare provider if you must but your post just don't sit well with me.
Click to expand...

Pretty much this- what do you want from the health-care system, and why do you even go to the ER if 'conventional' treatments like benzos simply make it worse? What do you expect the ER to do for you? What do you expect me to do for you?

I'll show up. I'll listen to you if you're conscious and cooperative. I won't really care if you're associating me with some unknown 'trauma', because I won't be causing any, nor will I be assessing your genitals in any way other than a quick "incontinent y/n?" fashion. I have no problems letting you try and sign an AMA in the midst of your non-seizure contortions on the ground if you're willing, nor do I have a problem with transporting you to ER-triage or a bed with no interventions other than the LifeStare in place if you want me to do that (after all, you have a non-life-threatening, documented, visible condition for which conventional therapy doesn't help). I will ask you to stop contorting with my Verbal Versed and ask you to exercise the self-discipline you should have to avoid making dangerous thrashing movements. I will even give you some valium or versed to help you calm down if you ask me for it, if that's what you want. I give it for anxiety quite often, and it usually helps. I don't even need to use a needle if you don't want an IV or IM injection.

If you're uncooperative and CAOx4, I don't have to take you if you don't want to go. That's not a problem.

If you're wanting to go and you are uncooperative and/or dangerous to yourself and others...that's where we have problems. I'll take you, but it's going to be on my terms. You're going to end up non-harmfully restrained if you decline chemical sedation with a rational reason. If you don't convey a rational reason or you're simply unsafe, then you will be sedated for your (and my!) protection.

Yes, this is tough on you. It's also tough on us. I don't like being forced to cater to the whims of a tiny segment of my patient population who uses their medical history as an excuse to be aggressive towards me and my partner, nor do I particularly like people who try and clog up ERs needlessly for known non-life-threatening conditions that they know the ER can't manage. You'll never know it though- I'll treat you with the same courtesy, respect, and action that everyone else gets.

I ran a conversion-disorder patient last month. 16 y/o F, semi-controlled movements on the floor of a drama classroom (yes, I know), GCS 15 CAOx4, demonstrated gross controllable neuro/motor function. I tried 5mg of Versed based on her "sometimes it works", and it didn't "it's like hot lava in my nose!" She'd only had it happen a few times before and she was under standing orders from her neurologist to be evaluated during and after each event per mother, had a few psych meds proscribed. Ended up with her gently restrained by her own request before we even loaded her up to keep her from putting her hands through my cabinets, even took her BFF as a third-rider to keep her calm and entertained (he was 18, so legit). I listened to her, did what she wanted, and took care of her within the EMS system to the best of our capability, and she was fine.
 
Dada Simba Detuned said:
as long as they are asked with respect and I do not feel that I am completely wasting my time.

At least one person on the thread posted an image suggesting that I was posting to much, so I would prefer to take this discussion off-line for the benefit of those who are sincerely interested in learning about PNES.

I am frankly too ill and tired right this very moment to subject myself to the additional stress of people telling me I'm BSing them. If you sincerely want to learn more, I'm happy to answer ALL of your respectful questions that seem sincere... otherwise why waste my limited (energy, health and) time responding to insincere postings.

Anyone who IS interested can PM me and/or I will provide my professional e-mail address so they can corrrespond with me there.

Thanks again to those of you who (at least try to) ask question and listen with an open mind,

Simba
Click to expand...

I think that a lot of your problem is that your (legitimate?) medical concern is also used by a massive, massive portion of our patient base as an excuse to literally sit around and collect welfare/disability in excess of our partner's paychecks, verbally and physically abuse us, clog emergency rooms with diagnosed non-emergent conditions and try and get free highs from high-dose controlled substances. Is it flawed that EMS providers apply human prejudices to their patients? Yes, but it is unavoidable.

You really get SSDI for what are essentially severe panic attacks with associated partial loss of muscle control? Retirement just got easy.
 
Simba, I'm curious if you have also been diagnosed with fibromyalgia. Anecdotally, I often see PNES along with fibromyalgia and was curious if there was any details on connection/causation between the two.
 
usalsfyre said:
So are you having grand-mal activity or not? Because you're making no sense. If you are having generalized seizure activity how are you snapping out of it to refuse benzos? Assuming your activity and "disruptiveness" get worse with sedation you would stand a fair chance of ending up RSI'd on a propofol infusion on my truck. What's your suggested treatment regimen?
Click to expand...

This is also something that most medical providers rightly or wrongly associate with recreational substance use, which is a legitimate and serious medical concern. If you're getting aggressive and not responding positively to my benzos, with no prior knowledge of your history, it's a pretty safe bet that you're getting sedated by force in your treatment pathway.

Most paramedics, myself included, think 'drugs?' when we come across a seemingly irrational patient. Horses are usually horses, not zebras.

I know that my point of view sounds horrible, but I am genuinely interested in learning more about your medical condition. Inferring that I'm going to rape you, that I am a completely ignorant barbarian/volunteer, and that I am only intent on forcing myself upon you and causing physical and mental harm is insulting to say the least, as is being judged for my appropriate treatment of patients with the exact same complaints, symptoms and medical history because it doesn't work for you is mildly insulting when you don't even recognize that your complaints and symptoms are not exclusive to your condition.

I'll listen to you if I ever run you as a patient and I'll do pretty much what you ask me to if you can provide me with a good reason. "I want drugs" is not a good reason, nor is "don't tie me up because it gives me TEH FLASHBACKS and I'M BEING RAAAPPEDD" and similar nonsense when you're demanding a ride but demonstrating aggression/uncontrollable movements that could endanger yourself or others. It's an inconvenience to bandage a cut on your hand from flailing into my equipment/cabinets, clean the cabinets and document why I allowed accountable, physical harm to come to my patient. It could subject me to financial penalties or even loss of employment. That's why you're restrained when you're 'seizing' and you don't want/don't respond to sedation (don't have RSI here yet). Don't want that? Educate your peers and maintain enough self-control to effectively communicate with EMS. If you can't do that- maybe you should be transported?
 
Last edited by a moderator:
I will do my best to respond to your questions...

I absolutely do not intend to suggest that most or even any PNES is as urgent as an acute epileptic patient. BUT... if I am thrashing and concussing and aspirating vomit then I'd like to think I'd come before a rule out cardiac case that may just have GERD or indigestion or someone's kid with an ear infection or strep throat.

I'm sorry if I came off as rude, but I have personally had extremely negative experiences with ED docs in particular in this country (not all - many, including my attending on Friday, are quite appropriate and compassionate and provide the best care possible given the constraints of the current US healthcare system).

This may be unique to me (and maybe a few others), but sometimes my PNES may be triggered by hypoglycemia because when the PNES are less severe I am more highly distractible and/or have concentration and memory issues (typical of severe chronic PTSD) than experiencing acute thrashing and at those times I may forget to eat or drink frequently enough. So... in that case, I should be treated like any other potentially hypoglycemia-induced seizure patient.

Benzos and haldol (which wasn't truly administered with my consent) make me MUCH worse... it generally only happens when I'm incapable of communicating in a manner in which the health care provider can understand me or believe I'm competent to refuse Rxs... generally in the midst of the most acute of trauma reactions or afterward when I present as possibly post-ictal or hypomanic. For those who asked how I can refuse benzo's during PNES... please understand that I may be in the ED for hours before they rule out medical causes, etc. and so there will be multiple episodes in between which I may have varying degrees of cognitive and physical function. I am sometimes quite confused, other times I can perform sophisticated tasks.. this is usually over the course of 3-15 hours while in the ED until I am "stabilized."

Regarding what "works"... mostly DBT grounding techniques and eliminating exposure to triggers (these will vary among patients depending on the nature of their trauma history). For me, triggers include pain, flashing or strobe lights, alarms or sirens, "unconsented touching or restraint", unexpected painful and sudden body movement (like someone patting me on the shoulder from behind on the side of my neck and shoulder injury), anything that is perceived by me as a sexual advance, etc. I often have difficulty being restrained in an enclosed area like the back of a truck with a strange man... but if it is an EMT who I know from work or a female I do much better. Many of the local EMTs know me so it is less of a problem for me than others who have similar triggers.

In terms of Rx, almost everything we have tried makes me worse... you name it, we've tried it... including clonidine (which doesn't work for me b/c my blood pressure is normally so low that when on clonidine I start to pass out when I stand up too quickly and even though I understand why that is happening it triggers a panic/trauma reaction that I have to then manage).

I am sorry for the long and rambling post, but I am doing my best to answer all of the questions.

Simba

systemet said:
While I think you were somewhat rude to the emergency room physician who suggested he would try and alleviate someone's suffering with benzodiazepines, I would suggest that you continue posting. If your goal is to advocate for more compassionate care from first responders, you've found an appropriate forum.

I guess the question I have, and it's not intended rudely, is, is it really? An epileptic can have intractable seizures, "status epilepticus", that can result in hypoxia, brain injury, hypercapnia, cardiac arrhythmia, and cardiovascular collapse. It's an acute and emergent life-threatening condition that requires immediate management, beginning with benzodiazepines.

While your PNES symptoms are probably terrifying, and very uncomfortable, once you've lowered yourself on to the ground are they really life-threatening? And if so, if you react paradoxically to benzodiazepines, what emergent treatment do you receive? What works for you?

I find this confusing, because you seem to be equating the two conditions, but I don't think they carry the same risks. If I'm misunderstanding this, please educate me.

I think you might cut your head a little bit, and possibly concuss yourself, but I don't know how violent your symptoms are.

Out of curiosity, how high? Because acute hypertension causing end-organ damage is quite rare.

To some degree, it does. I'm still a little confused as to what you want from first responders or the medical system in general.

If a paramedic, firefighter, nurse, etc. is saying to you "you're faking", or being rude, then I'd agree that this is inappropriate and unprofessional. If you're upset because someone with an tonic-clonic seizure is being evaluated before you in the emergency room, or that you're having to wait while patient's with potentially life-threatening illnesses are being seen first, then I think you might want to reevaluate your position.

I realise that I'm probably coming across as being blunt, or uncaring. I am and I'm not. I'm sorry you have an illness that is disabling you. Were you to call me at 911, I'd happily come and help you. Like I said earlier, I try not to judge the people I see in the back of my ambulance. Provided you treated me with respect, I'd do the same. If you were calm enough to tell me that benzodiazepines might worsen your condition, then I wouldn't give them to you. All the best.
Click to expand...
 
I'm sorry if I come off as "random" to you...

this is not an ideal media for me... if you want I can provide a written and concise summary of my ideas and thoughts and medical evidence, but I would need the ability to edit and review my writing before posting... which I cannot figure out how to do here in the time available.

The treatment regimen will vary depending on the patient... that is my point. If the patient can communicate with you, ask what works for them. If they cannot, they do what you need to do (of course)!

usalsfyre said:
I didn't go in with a closed mind. However the evidence presented is conflicting and unclear. One second you are having seizure activity so severe it causes injury. The next you are able to refuse benzodiazapines. This in and of itself is hugely contradictory.


I asked...what's the treatment regimen? I really, really don't like performing a hazardous procedure on someone that might not need it, but seizures refractory to benzos tend to get treated one way.


An approach that didn't start with calling us insensitive brutes might be a start to having people listen. Less blaming PNES and simply stating its a condition you're living with. Statements that make sense and are supported by evidence (not a bunch of random articles and youtube vids). All of these are ways to make me consider a position. At the moment you've pushed me the other direction.
Click to expand...
 
I am trying, I assure you... but it is not as easy as you seem to think

I am not "blaming PNES" or any other medical condition... I am merely try to explain that I am in this moment doing my best to respond to questions... but that it makes it much more difficult if I feel the need to self-censor and be embarrassed because I clearly am having difficulty with the technical issues. The more typos you see, the more my cognitive symptoms are kicking in. Think of your 95 year old grandparent trying to use this platform... that is how my brain feels right now (not ALL the time, but in between higher functioning states). So I will do my best, but it is all that I can do right now!

Thanks for you patience... Simba

Aidey said:
Except it doesn't work better for everyone. Many people have viewed this thread, and people who come to this forum in the future will be able to read it. Insisting that you answer question via PM deprives all of these people of the information you would be sharing. As a peer advocate doesn't it make more sense to inform as many people as possible?

The forum software really isn't that complicated. It is true that there is a limit on how long you can edit a post, but that really shouldn't affect how you reply to posts. You've obviously figured out the quote button, so why not address each post individually. That way you only have to process a small amount of information at a time.
Click to expand...
 
Under "go advanced" there is a preview post option.
 
Status
Not open for further replies.
Back
Top