# Pt faking seizure



## Anonymous (Jan 9, 2013)

How do you document this? Do you put that the patient was faking the seizure or since there is no definitive way for us to know do you treat it as a real seizure. Or do you put it appeared the patient was faking?


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## Mystwaker (Jan 9, 2013)

Treat as is and document all your findings. Unless your ALS is managing this pt there isn't a whole lot the basic can do. Manage their ABC and treat any secondary injury or illness from the "seizure".  I wouldn't document that you thought it was fake, maybe something along the lines of this pt presented with seizure like activity.


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## leoemt (Jan 9, 2013)

It is an official medical condition called Psuedo Seizures, often related to psychotic problems. 

In my report which is the SOAP format:

A - Possible Psudoseizures 

There is your documentation. 

http://en.wikipedia.org/wiki/Psychogenic_non-epileptic_seizures


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## Aidey (Jan 9, 2013)

Actually, faking seizures isn't a medical problem. Psychogenic seizures are. Big difference. And they are related to psychiatric problems, not psychotic. 

It is only proper to say possible pseudoseizures if the pt has already been diagnosed with them. Otherwise the proper way to document it is to write something like "seizure like activity". If you want to get more specific you can further describe the situation like "Non rhythmic seizure like activity without neurological impairment"


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## usalsfyre (Jan 9, 2013)

Easy...."patient showed organized neurological activity during the episode including x"(moving away from painful stimulus; clenching eyes shut; rapid, controlled muscular jerking; whatever)

Psuedoseizures is a actual ICD9 diagnosis that requires ruling out a host of other factors. I'd be careful using that one.


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## Anonymous (Jan 9, 2013)

Perfect thanks guys


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## Veneficus (Jan 9, 2013)

"Patient is drunk"

We would never write that as part of any report. 

"Patient is faking"

Why would anyone ever write something that said that in any form?

If it isn't written, it didn't happen. 

If you want to communicate your suspicions verbally with recieving staff that is one thing. Writing it down or typing it out is entirely something else.

Now I am not suggesting people don't fake seizures. I have seen it fairly often. I can tell they are faking just like you can. 

But having said that...

What does documenting that add to patient care?

What could go wrong if you did? 

There are a host of rare conditions that can present with "seizure-like activity." Do you really want to be the 1 in 350,000 or so that documented a "fake" seizure when it turns out to be something you never heard of before?

Just my opinion, but I think "faking" is too subjective a finding. If absolutely forced to write something on it, I would stick to something like:

"No sources of neurological deficit or abnormal activity are readily identified."


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## Anonymous (Jan 9, 2013)

Veneficus said:


> "Patient is drunk"
> 
> We would never write that as part of any report.
> 
> ...



Agreed, thus the reasoning for my questioning. Just wasn't able to figure out how to articulate it appropriately.


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## Anonymous (Jan 9, 2013)

Also don't want to be the one to not document an initial finding and have it be one of the 1 in 350,000. Even if I don't document something it would be kind of hard to deny it happened with a room full of people.


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## Veneficus (Jan 9, 2013)

Anonymous said:


> Also don't want to be the one to not document an initial finding and have it be one of the 1 in 350,000. Even if I don't document something it would be kind of hard to deny it happened with a room full of people.



I am not suggesting not documenting what you saw, I am suggesting documenting your opinion on the significance of those observations may not be the best idea.


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## MSDeltaFlt (Jan 9, 2013)

Aidey said:


> Actually, faking seizures isn't a medical problem. Psychogenic seizures are. Big difference. And they are related to psychiatric problems, not psychotic.
> 
> It is only proper to say possible pseudoseizures if the pt has already been diagnosed with them. Otherwise the proper way to document it is to write something like "seizure like activity". If you want to get more specific you can further describe the situation like "Non rhythmic seizure like activity without neurological impairment"



I've seen fake seizures.  And I believe I have seen an undiagnosed psychogenic seizure.  Totally lucid the whole time and was upset that nobody could/would tell her what was going on.  Would have the "seizure-like" activity including post ictal-like state that looked real.  I would ask her, "You sti with me?"  And she would immediately nod her head yes.  Weird.


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## Anonymous (Jan 9, 2013)

Veneficus said:


> I am not suggesting not documenting what you saw, I am suggesting documenting your opinion on the significance of those observations may not be the best idea.



Got it.


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## Shishkabob (Jan 9, 2013)

Anonymous said:


> How do you document this? Do you put that the patient was faking the seizure or since there is no definitive way for us to know do you treat it as a real seizure. Or do you put it appeared the patient was faking?



I never say someone is faking something on my official documentation (but will with my verbal to other providers)...


But I sure as hell will state things that will make the casual medical reader go "They're probably faking it", just the same as I won't say someone is drunk, but I will write things such as "Patient has a smell consistent with ETOH but denies diabetic history.  Pt in possession of several open alcoholic containers.  Pt slurred speech and had unsteady gait, aggressive" etc etc.


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## Veneficus (Jan 9, 2013)

Linuss said:


> I never say someone is faking something on my official documentation (but will with my verbal to other providers)...
> 
> 
> But I sure as hell will state things that will make the casual medical reader go "They're probably faking it", just the same as I won't say someone is drunk, but I will write things such as "Patient has a smell consistent with ETOH but denies diabetic history.  Pt in possession of several open alcoholic containers.  Pt slurred speech and had unsteady gait, aggressive" etc etc.



This.


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## mycrofft (Jan 9, 2013)

There are so many "tricks" to "detect" a "fake seizure" which can boomerang or, at least, appear uncaring.

I'm still a devotee of the judiciously applied ammonia salts , but before you do it (in accordance with your protocols), try it yourself. Get a little respect for it. Idiots abusing any patient (even factitious ones) by putting them into the nares and pinching or just HOLDING them under the nose have given a valuable tool a black mark. I prefer it to pinching the earlobe or sternal rub (which some folks can resist very well,thanks).

But even NH3 is one more datum. The hard thing is when you are sure it's not a true seizure; besides safety measures, you ought to follow protocols because that's what you're paid for and it won't hurt the pt.

Often they would either admit it to me, or start grinning when I caught them out.

PS: saw a case of torticolis in a psych pt related to meds, and this person was conscious, scared, and unable to stop the writhing. The dispatch was "man with seizure".







"No Ammonia For You!"


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## Aidey (Jan 9, 2013)

Linuss said:


> I never say someone is faking something on my official documentation (but will with my verbal to other providers)...
> 
> 
> But I sure as hell will state things that will make the casual medical reader go "They're probably faking it", just the same as I won't say someone is drunk, but I will write things such as "Patient has a smell consistent with ETOH but denies diabetic history.  Pt in possession of several open alcoholic containers.  Pt slurred speech and had unsteady gait, aggressive" etc etc.



Excerpt from a report I wrote: 

"EMS was contacted by Acme PD to remove the taser darts from a male. After the darts were removed Acme PD was advised that the pt did not need further medical attention at this time. Acme PD then advised the patient that he was under arrest. Immediately upon hearing this the patient fell slowly to the ground. The pts back began arching and his arms started flailing around. He also yelled "I'm having a seizure" 


For the record we didn't transport him, lol.


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## the_negro_puppy (Jan 9, 2013)

As you get more experience its easy to tell when someone's faking.

Check their eyes and breathing in particular.

Document it professionally:

45 y.o M pt nil hx of epilepsy or seizures / convulsions. On arrival pt was thrashing arms and legs on ground, breathing normally. Nil post-ictal phase or incontinence with patient fully alert shortly after. Pt states he suffers from 'pseudo-seizures'/


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## Bullets (Jan 9, 2013)

mycrofft said:


> I'm still a devotee of the judiciously applied ammonia salts , but before you do it (in accordance with your protocols), try it yourself. Get a little respect for it. Idiots abusing any patient (even factitious ones) by putting them into the nares and pinching or just HOLDING them under the nose have given a valuable tool a black mark. I prefer it to pinching the earlobe or sternal rub (which some folks can resist very well,thanks).


Not only do we not use ammonia inhalants any more, but we also dont do the sternal rub. 

Pressure applied to Supraorbital nerve works all the time



Linuss said:


> But I sure as hell will state things that will make the casual medical reader go "They're probably faking it", just the same as I won't say someone is drunk, but I will write things such as "Patient has a smell consistent with ETOH but denies diabetic history.  Pt in possession of several open alcoholic containers.  Pt slurred speech and had unsteady gait, aggressive" etc etc.



I used to use this but have moved away from using this in your narrative. We had a DUI case go to court and was found in the drivers favor because the cop put this in his report. The argument was that Ethanol has a slight odor and the real smell comes from the rest of the drink, either beer or such. 

We now say "patient has an odor of alcoholic beverage on breath"


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## Medic Tim (Jan 9, 2013)

Bullets said:


> Not only do we not use ammonia inhalants any more, but we also dont do the sternal rub.
> 
> Pressure applied to Supraorbital nerve works all the time
> 
> ...



seriously, this sounds like one of those "stories" told to students to scare them.


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## abckidsmom (Jan 9, 2013)

mycrofft said:


> PS: saw a case of torticolis in a psych pt related to meds, and this person was conscious, scared, and unable to stop the writhing. The dispatch was "man with seizure".



Acute dystonia?  Dispatchers have to pick something, and if it involves abnormal movement, they usually pick seizures.


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## VFlutter (Jan 9, 2013)

We had a patient obnoxiously fake a sezuire when I was doing ER clinical. He would open his one eye to see what we were doing then try to act unresponsive. The Dr pulled the classic foley line and said "Let's get the student to put a catheter in his penis. He needs the practice. Now don't forget the lube like last time". We all get a good laugh about that one.


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## Achilles (Jan 9, 2013)

Is it considered assault if you do the hand drop test?


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## Shishkabob (Jan 9, 2013)

Achilles said:


> Is it considered assault if you do the hand drop test?



Nope.


But on the same token, put your hand between their hand and their face...  I once had a nurse try the test and, just as I told her, the patient was not faking, but got a hand to the face anyhow.


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## leoemt (Jan 9, 2013)

Aidey said:


> Actually, faking seizures isn't a medical problem. Psychogenic seizures are. Big difference. And they are related to psychiatric problems, not psychotic.
> 
> It is only proper to say possible pseudoseizures if the pt has already been diagnosed with them. Otherwise the proper way to document it is to write something like "seizure like activity". If you want to get more specific you can further describe the situation like "Non rhythmic seizure like activity without neurological impairment"



Psychogenic seizures are also called Pseudo Seizures which is a medical problem. Pseudo Seizures can also be called fake seizures. The underlying cause can be a myriad of reasons including diagnosed or undiagnosed mental problems. 

In our system we don't "diagnose". We make our best guess based on information available to us but we don't diagnose that falls to an MD. Our doctors want to know as much as possible even if we believe the patient to be faking. Hence, in the A part of our report "Possible Pseudo Seizure."

I can usually tell based on Signs, Symptoms and History as to the type of seizure a patient is having. If I can't well that is what the "S" of my report is for. 

I don't need a prior diagnosis of Pseudo Seizures to call something a Pseudo Seizure. Hence why we use the term "possible".


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## VFlutter (Jan 9, 2013)

leoemt said:


> Psychogenic seizures are also called Pseudo Seizures which is a medical problem. Pseudo Seizures can also be called fake seizures. The underlying cause can be a myriad of reasons including diagnosed or undiagnosed mental problems.
> 
> In our system we don't "diagnose". We make our best guess based on information available to us but we don't diagnose that falls to an MD. Our doctors want to know as much as possible even if we believe the patient to be faking. Hence, in the A part of our report "Possible Pseudo Seizure."
> 
> ...



I think you missed the point of Aidey's post. There is a difference between faking seizures and pseudo/psychogenic seizures which are not fake seizures. I guess you can call it I medical problem but I would consider it more psychological, most commonly a conversion disorder. Why even bother saying "possible pseudo seizure"? Just describe what you see. You are walking a fine line of trying to diagnosis a very complex condition that you honestly have no clue about (not an insult). Also true psychogeic seizures are quite rare.


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## Aidey (Jan 9, 2013)

leoemt said:


> Psychogenic seizures are also called Pseudo Seizures which is a medical problem. Pseudo Seizures can also be called fake seizures. The underlying cause can be a myriad of reasons including diagnosed or undiagnosed mental problems.
> 
> In our system we don't "diagnose". We make our best guess based on information available to us but we don't diagnose that falls to an MD. Our doctors want to know as much as possible even if we believe the patient to be faking. Hence, in the A part of our report "Possible Pseudo Seizure."
> 
> ...



I'm sorry, but you're wrong. You are using a diagnostic term inappropriately and justifying it with semantics. As has been detailed above, there are several other things you can write under the "A" section and still describe the situation without misusing the term pseudoseizure. 

To look at it another way, you are called for a child who suddenly has shortness of breath during PE. She has a low SpO2 and is wheezing on expiration, but she has no history of lung problems. Are you going to write "Asthma attack" under assessment or "Acute onset SOB with wheezing"?. It is the same exact principle. If they have a history of asthma it is appropriate to document that as your assessment. If they do not, then you are giving them a new diagnosis without the necessary diagnostic tests.


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## Veneficus (Jan 9, 2013)

Could somebody tell me what the "A" part of a report is?

As well as the "S" part?


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## VFlutter (Jan 9, 2013)

Veneficus said:


> Could somebody tell me what the "A" part of a report is?
> 
> As well as the "S" part?



I am guessing A= Assessment and S= Subjective


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## Veneficus (Jan 9, 2013)

Chase said:


> I am guessing A= Assessment and S= Subjective



Thanks.


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## Veneficus (Jan 9, 2013)

leoemt said:


> In our system we don't "diagnose". We make our best guess based on information available to us but we don't diagnose that falls to an MD. Our doctors want to know as much as possible even if we believe the patient to be faking. Hence, in the A part of our report "Possible Pseudo Seizure."



Now that I understand you are attempting to use a SOAP format... (Thanks Chase)

I feel a burning compulsion to tell you that you cannot possible document you assessment, which is what you think is wrong with the patient without offering a Dx. 

It may be a differential dx, an incomplete differential dx, maybe  even a presumptive dx. BUt it is still a dx. 

Please do not try to hide behind "not making a dx." It is something amateurs do and you are better than that.


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## VFlutter (Jan 9, 2013)

Veneficus said:


> Now that I understand you are attempting to use a SOAP format... (Thanks Chase)
> 
> I feel a burning compulsion to tell you that you cannot possible document you assessment, which is what you think is wrong with the patient without offering a Dx.
> 
> ...



I understand your point and agree to a certain degree but in this situation what does adding a presumptive ddx like "Pseudoseizure" add to the report? I do not see a reason to throw in that dx instead of just documenting seizure like activity.


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## Veneficus (Jan 9, 2013)

Chase said:


> I understand your point and agree to a certain degree but in this situation what does adding a presumptive ddx like "Pseudoseizure" add to the report? I do not see a reason to throw in that dx instead of just documenting seizure like activity.



I do not think adding a presumptive rare diagnosis helps at all. Actually I think it is rather pointless. 

A differential or simply unknown is a much better idea.


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## Milla3P (Jan 9, 2013)

"Pt stated that she had seizures when not administered fentenyl IV rapid push. Walked to truck, entered and sat on stretcher under her own power with unhindered gait. After being secured to stretcher and transport initiated pt displayed significant tonic-clonic seizure-like activity. After completion of seizure-like activity, pt returned to a&ox4 stating that she had a seizure and would have another without the administration of IV fentenyl."

Something like that?


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## mycrofft (Jan 9, 2013)

abckidsmom said:


> Acute dystonia?  Dispatchers have to pick something, and if it involves abnormal movement, they usually pick seizures.



People dialing in 911 (or inmates "hitting the button") call EVERYTHING "a seizure".


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## leoemt (Jan 9, 2013)

Veneficus said:


> Now that I understand you are attempting to use a SOAP format... (Thanks Chase)
> 
> I feel a burning compulsion to tell you that you cannot possible document you assessment, which is what you think is wrong with the patient without offering a Dx.
> 
> ...



We don't make a dx. Now that I said what the legal eagles want me to say you are correct though I would lean more to a presumptive dx. 

Pseudoseizures have been lumped under psycogenic seizures. However the definition of Pseudo is pretend or fake. As taken from dictionary.com:

pseu·do  [soo-doh]  Show IPA
adjective
1.
not actually but having the appearance of; pretended; false or spurious; sham.
2.
almost, approaching, or trying to be.
Origin: 
1940–45;  independent use of pseudo-

Therefore a Pseudo Seizure is a pretend, or false seizure. People who fake seizures have underlying causes often psychological. I don't ever call anything "fake." 

I document what I see. Since a person who fakes a seizure won't be postictal I can't really call it a Tonic - Clonic. My documentation will support what I observe and the "A". It is understood, at least around here, that the 'A' is not a diagnosis and is only a "best guess." I also don't ever accuse anyone of faking anything. However, I am blunt in my assessment and will tell them out right that I don't feel they were having actual seizure activity. 

I transported a patient from the local ER to a SNF. In the Hospital paper work was the diagnosis of Pseudo seizures and in parentheses was Fake Seizures. It was followed up by a detailed psych exam which explained why the patient faked their seizures. 

I have had patients admit to me that they were faking their seizures. It doesn't make them any less of a patient but it does change their treatment as treatment will likely focus on the psychological rather than the neurological. It is important for me to relay to the hospital if I suspect the patient is faking their seizures. 

It will be up to the hospital to determine why the patient is faking their seizure.


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## mycrofft (Jan 9, 2013)

Veneficus said:


> Now that I understand you are attempting to use a SOAP format... (Thanks Chase)
> 
> I feel a burning compulsion to tell you that you cannot possible document you assessment, which is what you think is wrong with the patient without offering a Dx.
> 
> ...



If I didn't have the diagnostic equipment or there were conflicting findings/history, I'd weasel out by assessing as "R/O Somethingorother" or "dignuslike dermatitis" (not those exact terms, but the principle that I honestly indicated my trend of thinking ands was not comfortable with my assessment's trend). I'd call the MD when it seemed to need more of his attention sooner than later. He or she would call me if they wanted more than I was ready to commit to paper.


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## VFlutter (Jan 9, 2013)

leoemt said:


> We don't make a dx. Now that I said what the legal eagles want me to say you are correct though I would lean more to a presumptive dx.
> 
> Pseudoseizures have been lumped under psycogenic seizures. However the definition of Pseudo is pretend or fake. As taken from dictionary.com:
> 
> ...



Yes that is the dictionary definition of pseudo. The "not actually but having an appearance of" is what pseudo usually refers to in medical usage not false or pretend. A pseudo-aneurysm has an appearance like that of a true aneurysm, it is not faking or pretending to be an aneurysm. A psychogenic seizure is *NOT * a pretend or false seizure. 

A quote from the Wiki link you posted, which is under the heading Psychogenic Non-epileptic seizures (The correct term)

"The use of older terms including pseudoseizures and hysterical seizures are discouraged.[4] While it is correct that a non-epileptic seizure may resemble an epileptic seizure, pseudo can also connote "false, fraudulent, or pretending to be something that it is not." Non-epileptic seizures are not false, fraudulent, or produced under any sort of pretense.

The condition may also be referred to as non-epileptic attack disorder, functional seizures, or psychogenic non-epileptic seizures. Within DSM IV the attacks are classified as a somatoform disorder, whilst in ICD 10 the term dissociative convulsions, is used, classed as a conversion disorder.[1]"

I do not know what that was written in the hospital report but that does not make sense to me. A person purposely faking a seizure is not a pseudo seizure. I agree people with psychological disorders may fake seizures but that is not what psychogenic seizures are. I would suggest researching somatoform disorders and getting a better understanding of psychological disorders.

Edit: To be fair, the actual medical combining form pseudo is false or appearing to be.


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## Veneficus (Jan 9, 2013)

leoemt said:


> We don't make a dx. Now that I said what the legal eagles want me to say you are correct though I would lean more to a presumptive dx.



It is not legal eagles that say you do not dx, it is morons. 



leoemt said:


> Pseudoseizures have been lumped under psycogenic seizures. However the definition of Pseudo is pretend or fake. As taken from dictionary.com:
> 
> pseu·do  [soo-doh]  Show IPA
> adjective
> ...



I don't think you understand. 

While you are correct in your wordsmithing, there is an actual, specific,medical condition which shares the name. In order to avoid confusion, it would help if you didn't use the term. 

Just so you know, the bolded statements conflict.



leoemt said:


> the "A". It is understood, at least around here, that the 'A' is not a diagnosis and is only a "best guess."



It is always a best guess. But it is still a dx. The only people who commonly reach a final definitive dx are pathologists. There are many types of dx. What you are describing is a working dx.

People who tell you you do not dx are simply misinformed, though they may believe what they say. 



leoemt said:


> I transported a patient from the local ER to a SNF. In the Hospital paper work was the diagnosis of Pseudo seizures and in parentheses was Fake Seizures. It was followed up by a detailed psych exam which explained why the patient faked their seizures.



I don't doubt it, but without the qualifier of (fake seizure) it can cause confusion. Write it if you are so compelled to, I am just trying to help you.



leoemt said:


> I have had patients admit to me that they were faking their seizures. It doesn't make them any less of a patient but it does change their treatment as treatment will likely focus on the psychological rather than the neurological. It is important for me to relay to the hospital if I suspect the patient is faking their seizures.



I don't think anyone disputes that.


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## Aidey (Jan 9, 2013)

Chase said:


> Y
> 
> Edit: To be fair, the actual medical combining form pseudo is false or appearing to be.



Hence why they renamed them. 


As we've all pointed out though, the term pseudoseizure and psychogenic seizure are still interchangeable and pseudoseizure is a diagnosis, not a fast way to describe a fake seizure.


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## mycrofft (Jan 10, 2013)

Factitious seizureform activity: lying with body language


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## Dada Simba Detuned (Feb 17, 2013)

*PNES is REAL and you should document it as such!*

Psychogenic nonepileptic seizures (PNES), or pseudoseizures are paroxysmal episodes that resemble and often misdiagnosed as epileptic seizures; however, PNES are psychological (ie, emotional, stress-related) in origin.
PLEASE stop re-traumatizing trauma patients by feeding into the stigma and often incorrect assumption that PNES patients are "faking it"!

"Paroxysmal nonepileptic episodes can be either organic or psychogenic. Syncope, migraine, and transient ischemic attacks (TIAs) are examples of organic nonepileptic paroxysmal symptoms. This article covers only PNES.

The terminology on the topic has been variable and, at times, confusing. Various terms are used, including pseudoseizures, nonepileptic seizures, nonepileptic events, and psychogenic seizures. PNES is the preferred term and the one used throughout this article.

PNES are common at epilepsy centers, where they are seen in 20-30% of patients referred for refractory seizures. PNES are probably also common in the general population, with an estimated prevalence of 2-33 cases per 100,000 population, which makes PNES nearly as prevalent as multiple sclerosis or trigeminal neuralgia."

This chat board won't let me attach a link, but google "Psychogenic Nonepileptic Seizures" and "Selim R Benbadis, MD" and spend some time educating yourselves before you judge others or write "faking it" in your documentation.

Thanks for your attention and time!


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## the_negro_puppy (Feb 17, 2013)

Dada Simba Detuned said:


> Psychogenic nonepileptic seizures (PNES), or pseudoseizures are paroxysmal episodes that resemble and often misdiagnosed as epileptic seizures; however, PNES are psychological (ie, emotional, stress-related) in origin.
> PLEASE stop re-traumatizing trauma patients by feeding into the stigma and often incorrect assumption that PNES patients are "faking it"!
> 
> "Paroxysmal nonepileptic episodes can be either organic or psychogenic. Syncope, migraine, and transient ischemic attacks (TIAs) are examples of organic nonepileptic paroxysmal symptoms. This article covers only PNES.
> ...



I am aware of the term. However if the cause is deemed to be psychogenic, then perhaps the patient is "faking it" if by choice or somewhat involuntary (mental illness?) if they are 'faking' the symptoms of a tonic clonic convulsion and passin g it off to be from a non psychogenic cause.


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## DrParasite (Feb 17, 2013)

mycrofft said:


> If I didn't have the diagnostic equipment or there were conflicting findings/history, I'd weasel out by assessing as "R/O Somethingorother"


I've done R/O ankle injury, r/o seizure, and any time when i am going with a diagnosis that is pretty obvious but because I am not supposed to diagnose, it's a rule/out.  is it a copout? sure.  does it show what I was thinking?  pretty clearly, to anyone who asks, but with enough wiggle room that if i'm wrong, i can say i was just ruling out something, and not making a diagnosis.


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## mycrofft (Feb 18, 2013)

Dada Simba Detuned said:


> Psychogenic nonepileptic seizures (PNES), or pseudoseizures are paroxysmal episodes that resemble and often misdiagnosed as epileptic seizures; however, PNES are psychological (ie, emotional, stress-related) in origin.
> PLEASE stop re-traumatizing trauma patients by feeding into the stigma and often incorrect assumption that PNES patients are "faking it"!
> 
> "Paroxysmal nonepileptic episodes can be either organic or psychogenic. Syncope, migraine, and transient ischemic attacks (TIAs) are examples of organic nonepileptic paroxysmal symptoms. This article covers only PNES.
> ...



I commented about this in the other thread. Yes people can have real seizureform activity lacking hallmark clinical signs of a true seizure but be outside the pt's control. It is fairly rare and we see many more cases of factitious seizures, so we miss it.

A thread with lots of good citations from recognized sources will go far to getting folks more exposed to this issue.


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## zmedic (Feb 18, 2013)

I'm a strong believer in benzos (Ativan, Valium) for thing that looks like a seizure. My thinkings is either:

1: They are really having a seizures, and the benzo will help with that. or

2: They are faking, and if they are doing this to the point where I have to deal with them they have a behavior problem and are disrupting my ER. So they need to be sedated. Benzos help with that too.

Win win


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## Dada Simba Detuned (Feb 18, 2013)

*Your approach may not work for all patients and in my opinion...*

... it is incredibly disrespectful and insensitive to patients with PNES. Some patients with PNES (although admittedly not the majority) may have a paradoxical reaction to benzo's and/or sedation, particularly those with a history of trauma. 

Please see: Paradoxical Reactions to Benzodiazepines: Literature Review and Treatment Options Carissa E. Mancuso, Pharm.D., Maria G. Tanzi, Pharm.D., Michael Gabay, Pharm.D. Pharmacotherapy. 2004;24(9) 

For those of us with (Dx'd or unDx'd) PNES, we are not "faking it" any more than someone with epilepsy or another involuntary motor movement disorder than can potentially be dangerous, and treating us like "fakers" or malingerers is basically an accusation and judgement rather than compassionate and thoughtful medical treatment.

"PNES are probably also common in the general population, with an estimated prevalence of 2-33 cases per 100,000 population, which makes PNES nearly as prevalent as multiple sclerosis or trigeminal neuralgia." http://emedicine.medscape.com/article/1184694-overview 

PNES are commonly misdiagnosed as epilepsy. It is by far the most frequent nonepileptic condition seen in epilepsy centers, where they represent 20-30% of referrals. About 50-70% of patients become seizure-free after diagnosis, and about 15% also have epilepsy. Like most manifestations of conversion and other somatoform disorders, PNES occur more frequently in women (approximately 70% of cases) than in men. http://emedicine.medscape.com/article/1184694-overview#a0199

"Antecedent sexual trauma or abuse is thought to be important in the psychopathology of psychogenic seizures and psychogenic symptoms in general. A history of abuse may be more frequent in convulsive rather than limp type of PNES."  http://emedicine.medscape.com/article/1184694-clinical

"By definition, PNES is a psychiatric disorder. According to the Diagnostic and Statistical Manual for Mental Disorders (DSM) classification, physical symptoms caused by psychological causes can fall under 3 categories: somatoform disorder, factitious disorder, and malingering.

A somatoform disorder is the unconscious production of physical symptoms due to psychological factors. The symptoms are not under voluntary control, ie, the patient is not faking and not intentionally trying to deceive.     Somatoform disorders are subdivided into several disorders depending on the characteristics of the physical symptoms and their time course. The 2 somatoform disorders relevant to PNES are conversion disorder and somatization disorder. The vast majority of patients with PNES have conversion disorder. The Diagnostic and Statistical Manual for Mental Disorders, Fourth Edition (DSM-IV) added a new subcategory of conversion disorder (from the Diagnostic and Statistical Manual for Mental Disorders, Revised Third Edition [DSM-III-R]) specifically termed conversion disorder with seizures.

Factitious disorder and malingering imply that the patient is purposely deceiving the physician, ie, faking the symptoms. The difference between factitious disorder and malingering is that, in malingering, the reason for the deception is tangible and rationally understandable (albeit possibly reprehensible). In factitious disorder, the motivation is a pathologic need for the sick role. An important corollary is that malingering is not considered a mental illness, whereas factitious disorder is.

A generally accepted view is that most patients with PNES have somatoform disorder rather than malingering or factitious disorder. Although the DSM classification is simple in theory, knowing whether a given patient is faking it is nearly impossible. In some circumstances, intentional faking can be diagnosed only by catching a person in the act of faking (eg, self-inflicting injuries, ingesting medications or eye drops to cause signs, putting blood in the urine to simulate hematuria). Malingering may be underdiagnosed, partly because the diagnosis of is essentially an accusation."

from "Psychogenic Nonepileptic Seizures Clinical Presentation" Author: Selim R Benbadis, MD; Chief Editor: Helmi L Lutsep, MD, found at: http://emedicine.medscape.com/article/1184694-clinical#a0218

So I disagree that your approach is a "win win." In the interest of "dealing with a behavior problem" and minimizing disruption in your ED, you are disrespecting the patients with PNES and potentially causing them harming through re-traumatization and stigma.

Please consider your ethical obligations and oath, do a bit more reading about PNES, and then think about what it might be like to experience from the patient's or patient's loved ones' perspective when you tell them that they are "faking it" and disrupting your ER.

Thank you for your attention and time,
Simba 
(a PTSD and sexual trauma survivor and peer advocate who also happens to be Dx'd with PNES and interracts with health care providers like you on a regular basis)



zmedic said:


> I'm a strong believer in benzos (Ativan, Valium) for thing that looks like a seizure. My thinkings is either:
> 
> 1: They are really having a seizures, and the benzo will help with that. or
> 
> ...


----------



## Dada Simba Detuned (Feb 18, 2013)

*Your approach may not work for all patients and in my opinion...*

... it is incredibly disrespectful and insensitive to patients with PNES (previously Dx'd or not). Some patients with PNES (although admittedly not the majority) may have a paradoxical reaction to benzo's and/or sedation, particularly those with a history of trauma. Please see: Paradoxical Reactions to Benzodiazepines: Literature Review and Treatment Options Carissa E. Mancuso, Pharm.D., Maria G. Tanzi, Pharm.D., Michael Gabay, Pharm.D. Pharmacotherapy. 2004;24(9). 

For those of us with (Dx'd or unDx'd) PNES, we are not "faking it" any more than someone with epilepsy or another involuntary motor disorder tht can potentially be dangerous, and treating us like "fakers" or malingerers is basically an accusation and judgement rather than compassionate and thoughtful medical care.

"PNES are probably also common in the general population, with an estimated prevalence of 2-33 cases per 100,000 population, which makes PNES nearly as prevalent as multiple sclerosis or trigeminal neuralgia." http://emedicine.medscape.com/article/1184694-overview "PNES are commonly misdiagnosed as epilepsy. It is by far the most frequent nonepileptic condition seen in epilepsy centers, where they represent 20-30% of referrals. About 50-70% of patients become seizure-free after diagnosis, and about 15% also have epilepsy. Like most manifestations of conversion and other somatoform disorders, PNES occur more frequently in women (approximately 70% of cases) than in men." http://emedicine.medscape.com/article/1184694-overview#a0199 "Antecedent sexual trauma or abuse is thought to be important in the psychopathology of psychogenic seizures and psychogenic symptoms in general. A history of abuse may be more frequent in convulsive rather than limp type of PNES."  http://emedicine.medscape.com/article/1184694-clinical

"By definition, PNES is a psychiatric disorder. According to the Diagnostic and Statistical Manual for Mental Disorders (DSM) classification, physical symptoms caused by psychological causes can fall under 3 categories: somatoform disorder, factitious disorder, and malingering.

A somatoform disorder is the unconscious production of physical symptoms due to psychological factors. The symptoms are not under voluntary control, ie, the patient is not faking and not intentionally trying to deceive. Somatoform disorders are subdivided into several disorders depending on the characteristics of the physical symptoms and their time course. The 2 somatoform disorders relevant to PNES are conversion disorder and somatization disorder. The vast majority of patients with PNES have conversion disorder. The Diagnostic and Statistical Manual for Mental Disorders, Fourth Edition (DSM-IV) added a new subcategory of conversion disorder (from the Diagnostic and Statistical Manual for Mental Disorders, Revised Third Edition [DSM-III-R]) specifically termed conversion disorder with seizures.

Factitious disorder and malingering imply that the patient is purposely deceiving the physician, ie, faking the symptoms. The difference between factitious disorder and malingering is that, in malingering, the reason for the deception is tangible and rationally understandable (albeit possibly reprehensible). In factitious disorder, the motivation is a pathologic need for the sick role. An important corollary is that malingering is not considered a mental illness, whereas factitious disorder is.

A generally accepted view is that most patients with PNES have somatoform disorder rather than malingering or factitious disorder. Although the DSM classification is simple in theory, knowing whether a given patient is faking it is nearly impossible. In some circumstances, intentional faking can be diagnosed only by catching a person in the act of faking (eg, self-inflicting injuries, ingesting medications or eye drops to cause signs, putting blood in the urine to simulate hematuria). Malingering may be underdiagnosed, partly because the diagnosis of is essentially an accusation."

All quoted passages above are from "Psychogenic Nonepileptic Seizures" Author: Selim R Benbadis, MD; Chief Editor: Helmi L Lutsep, MD, found at: http://emedicine.medscape.com/article/1184694-overview

So your approach is a "win win" for you, but not for the patient, the patient's loved ones, and the numerous providers who may have to try to "undo" the additional trauma to which you expose patient(s) with your approach. In the interest of "dealing with a behavior problem" and minimizing disruption in your ED, you are disrespecting the patients with PNES and potentially causing them harming through re-traumatization and stigma.

PLEASE consider your ethical obligations and oath as a physician (and first responder), do a bit more reading about PNES, and then think about what it might be like to experience your approach from the patient's or patient's loved ones' perspective when you tell them that they are "faking it" and disrupting your ER.

(With all due respect) Thank you for your attention and time,
Simba 
(a PTSD and sexual trauma survivor and peer advocate, who also happens to be Dx'd with PNES and interracts with health care providers like you on a regular basis)


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## Dada Simba Detuned (Feb 18, 2013)

*A lay version (with a better soundtrack)...*

http://www.youtube.com/watch?v=QWB0dq3RO3U


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## Dada Simba Detuned (Feb 18, 2013)

*In NYC area, this is a good resources...*

"Psychogenic non-epileptic seizures: stigma and strength in numbers"
Posted by Lorna Myers on Sep 24th, 2012 and found at: http://blog.nonepilepticseizures.com...th-in-numbers/



zmedic said:


> I'm a strong believer in benzos (Ativan, Valium) for thing that looks like a seizure. My thinkings is either:
> 
> 1: They are really having a seizures, and the benzo will help with that. or
> 
> ...


----------



## Dada Simba Detuned (Feb 18, 2013)

*Sometimes we laugh... because after a while, it's the best medicine!*

http://www.youtube.com/watch?v=5uNKF6Mbsvc&list=PLB2C12D0070D52495

:rofl:


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## Dada Simba Detuned (Feb 18, 2013)

*For those interested in learning (a lot) more about PNES...*

http://www.youtube.com/watch?v=LRzytAhu0hg&list=PLB2C12D0070D52495


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## Dada Simba Detuned (Feb 18, 2013)

*What it is like to live your life with a conversion disorder/PNES...*

http://www.youtube.com/watch?v=IaNruAT3zAE


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## Dada Simba Detuned (Feb 18, 2013)

*This is the kind of PNES I usually have when EMTs respond*

But please note that this does not mean that we will "stay with you" if additional (internal and/or environmental) "triggers" occur. If someone with PNES is lucid and responsive, it is best to ask them if they know what their triggers are... so you can try to avoid them during the triage and transport. For some, merely being treated like a "faker" can be so emotionally upsetting (based on past neglect and/or inappropriate care from health providers) that it can induce a much more severe PNES (that CAN potentially be dangerous to the patient and the first responders, just like epileptic seizures). Most people cannot die from a "panic attack" but that is not always the case for everyone with PNES... falls, head trauma, uncontrollable high blood pressure... all of these are very real risks for some of us that should be treated accordingly. 



MSDeltaFlt said:


> I've seen fake seizures.  And I believe I have seen an undiagnosed psychogenic seizure.  Totally lucid the whole time and was upset that nobody could/would tell her what was going on.  Would have the "seizure-like" activity including post ictal-like state that looked real.  I would ask her, "You sti with me?"  And she would immediately nod her head yes.  Weird.


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## mycrofft (Feb 18, 2013)

zmedic said:


> I'm a strong believer in benzos (Ativan, Valium) for thing that looks like a seizure. My thinkings is either:
> 
> 1: They are really having a seizures, and the benzo will help with that. or
> 
> ...



Actually, this is clinically appropriate as a differential. It doesn't have a specific psychogenic label, but that ought to be unearthed during history-taking. 

What if a person thinks they have psychogenic seizures but they are having real ones? Also, I've seen quasi-sizure-like activity in persons who have passed out from vaso-vagal syndrome (after immunizations for instance) and from hyperventilation plus either psychological or alcohol/drug related issues. Benzo's don't help them, but in these cases it might be part of a differential between origins.

I CANNOT imagine why someone could not carry a card or some  such identifying themselves as having some sort of psychologically-based somatic disorder which might imperil themselves or others around them. I'd make my own. And I would not be driving or operating machinery.


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## systemet (Feb 18, 2013)

Can someone explain to me how PNES can be fatal?  I get the obvious episode starts while driving or at the top of a tall flight of stairs.  But I can't see how the same issues exist as present with status epilepticus.  Am I missing something?

Simba -- you mention in some of your youtube material that no one takes a PNES episode as seriously as a grand mal seizure.  Why do you think that they should?  What am I missing about this condition that makes it life-threatening?  Why should the PNES patient be seen before an 80 year old with possible cardiac symptoms?

I don't claim to understand PNES, and I've read the articles that you've posted, including the medscape pages.  I try not to judge people in the back of my ambulance, and try and show everyone respect, but I'm confused as to what you want from EMS and the healthcare system as a whole?


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## Dada Simba Detuned (Feb 18, 2013)

*I'll try to respond to your questions...*

(though on at least one of these threads it was suggested that I should stop posting...)

It depends on how acute/severe the PNES is. Most of the time I can control the symptoms well enough to lower myself into a safe position. However, if I am VERY triggered it is dangerous in many of the ways that any other seizure or involuntary motor condition may be. 

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.

Friday, after being discharged from the ED but while waiting for my paperwork before I was allowed to leave... I asked someone to help me because I could feel another one possible coming on. I was ignored, until I fell off the chair and was PNESing underneath some chairs in the hallway between the nursing station and patient beds... my attending and nurse were not present so everyone assumed I was having an epileptic seizure (because that is how I present when when having a severe trauma reaction).

I will likely not die from electrical activity related issues, unless I am having an epileptic seizure (which may be possible because of the small chance of co-morbidity). 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.

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


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## Dada Simba Detuned (Feb 18, 2013)

*Thanks for your thoughtful reply(ies)*

(Like an epileptic) in Massachusetts the DMV suspends my license each time that I have a documented "seizure like episode" until my neurologist certifies that my condition is stable and I am safe to operate a motor vehicle. 

Re: Benzo's and sedation, it may help with your DDx... I am merely suggesting that using such Rxs as a diagnostic tool can sometimes be harmful to patients if (like me) benzo's or sedation actually exacerbate the condition. And... if you make my PNES worse (after I try to refuse sedation and you ignore me), then I become MORE disruptive in your ED (or truck), not less. My case is particularly severe, because my first sexual trauma was related to a physician... so anytime a health professional tries to sedate me against consent it is a HUGE trigger. But many other PTSD and sexual trauma survivors have shared with me similar stories (sedation agitates trauma survivors in some circumstances).

Hope this is helpful/responsive to your comments and questions.



mycrofft said:


> Actually, this is clinically appropriate as a differential. It doesn't have a specific psychogenic label, but that ought to be unearthed during history-taking.
> 
> What if a person thinks they have psychogenic seizures but they are having real ones? Also, I've seen quasi-sizure-like activity in persons who have passed out from vaso-vagal syndrome (after immunizations for instance) and from hyperventilation plus either psychological or alcohol/drug related issues. Benzo's don't help them, but in these cases it might be part of a differential between origins.
> 
> I CANNOT imagine why someone could not carry a card or some  such identifying themselves as having some sort of psychologically-based somatic disorder which might imperil themselves or others around them. I'd make my own. And I would not be driving or operating machinery.


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## Dada Simba Detuned (Feb 18, 2013)

*"edited"*

Sorry for the typos, I'm still recovering from the multiple PNESs of the long weekend and at times have difficulty with certain cognitive tasks (especially when experiencing the usual drowsiness phase after the PNES).

I forgot to include that I could also potentially aspirate on my own vomit.
Particularly if I am restrained or sedated against consent, I can become extremely agitated and combative... which is when it can be dangerous to first responders. It is ALWAYS better (in my opinion) when someone is seizing but still coherent (no matter what type of seizure) to ask if it is ok to help them and touch them. I (as the patient) don't want to hurt you, and I assume that you don't want to (unecessarily) hurt me... so it is better to just ask and listen to the patient and try to respect their request unless there is a clearly indicated reason to not do so. THAT is what I ask of the Western health care system. Don't accuse me of faking and then ignore me. Don't assume that I am an attention or drug seeking psych patient because you don't know my history as well as I and my team of neuro-psych providers do... so maybe show a little respect because I may just know a little bit more about my own body and mind and medical condition than you do! That is what I want health care providers to consider before judging me and treating me like a "faker" or a "drug addict" or a "psychotic crazy (insert appropriate term" here... After you have lived in my body and experienced my trauma, then you get to judge me... until then try to have a little compassion and respect. Most of you do that already as part of your job... and for that I am incredibly thankful. The rest of you... I just hope this helps you to stop and think for five minutes before you judge another "faker" in your ED or on your call. Thanks for your attention and time. Simba



Dada Simba Detuned said:


> (though on at least one of these threads it was suggested that I should stop posting...)
> 
> It depends on how acute/severe the PNES is. Most of the time I can control the symptoms well enough to lower myself into a safe position. However, if I am VERY triggered it is dangerous in many of the ways that any other seizure or involuntary motor condition may be.
> 
> ...


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## Dada Simba Detuned (Feb 18, 2013)

*Btw...*

... not that this should matter in the least... but sadly it does to some people... I have an undergraduate degree, a law degree (and practiced health care law for 10 years) and a Masters of Public Health from Harvard. My father is a physician, my mother is a double masters and PhD cognitive neuro-psychologist, and my sister is a nurse anesthesiologist. I (obviously) cannot perform certain paid work right now and I have been on SSDI since I began having PNES over two years ago after I was prescribed Tramadol (Ultram) and multiple benzo's to treat an orthopedic trauma.

BUT in the last two years I have met numerous patients who have survived unspeakable sexual and other trauma... who also have PNES (and in some cases also have epileptic seizures). Western medicine and science has not yet caught up with the connections between emotions, trauma, brain and hormonal functions and other somatic issues. Until we have a better understanding of the body-mind connections and trauma reactions, I merely ask that some of you suspend your judgement a little bit longer and give at least some of us the benefit of the doubt before assuming we are "fakers" or don't need "real" medical attention.

Thanks again. With this post I will now take a break from this forum/thread (since it has been suggested at least once that I do). If you are sincerely interested in learning more about PNES and/or trauma reactions, please PM me and I will be happy to refer you to numerous sources for additional education, resources, treatment centers in the U.S., etc.

Be well,
Simba


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## usalsfyre (Feb 18, 2013)

Dada Simba Detuned said:


> Re: Benzo's and sedation, it may help with your DDx... I am merely suggesting that using such Rxs as a diagnostic tool can sometimes be harmful to patients if (like me) benzo's or sedation actually exacerbate the condition. And... if you make my PNES worse (after I try to refuse sedation and you ignore me), then I become MORE disruptive in your ED (or truck), not less.


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?



Dada Simba Detuned said:


> My case is particularly severe, because my first sexual trauma was related to a physician... so anytime a health professional tries to sedate me against consent it is a HUGE trigger. But many other PTSD and sexual trauma survivors have shared with me similar stories (sedation agitates trauma survivors in some circumstances).
> 
> Hope this is helpful/responsive to your comments and questions.


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.


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## ExpatMedic0 (Feb 18, 2013)

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.


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## Dada Simba Detuned (Feb 18, 2013)

*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.


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## ExpatMedic0 (Feb 18, 2013)

Like this for example, whats your guys take on this? http://drkatie.wordpress.com/2008/07/26/pseudoseizure/


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## Aidey (Feb 18, 2013)

He did ask you multiple question that would enlighten him on your condition that you haven't responded to.


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## Dada Simba Detuned (Feb 18, 2013)

*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.


----------



## Aidey (Feb 18, 2013)

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.


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## usalsfyre (Feb 18, 2013)

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.


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...


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


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.


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## systemet (Feb 18, 2013)

Dada Simba Detuned said:


> (though on at least one of these threads it was suggested that I should stop posting...)



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.



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.



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.



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).



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.


----------



## Dada Simba Detuned (Feb 18, 2013)

*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.


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## Dada Simba Detuned (Feb 18, 2013)

*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.


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## Aidey (Feb 18, 2013)

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.


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## NomadicMedic (Feb 18, 2013)

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.


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## RocketMedic (Feb 18, 2013)

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.



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.


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## RocketMedic (Feb 18, 2013)

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 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._


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## NomadicMedic (Feb 18, 2013)

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.


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## RocketMedic (Feb 18, 2013)

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?



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?


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## Dada Simba Detuned (Feb 18, 2013)

*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.
> 
> ...


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## Dada Simba Detuned (Feb 18, 2013)

*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.
> ...


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## Dada Simba Detuned (Feb 18, 2013)

*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.


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## Aidey (Feb 18, 2013)

Under "go advanced" there is a preview post option.


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## STXmedic (Feb 18, 2013)

Type it in word, then copy and paste.

And a cardiac rule-out isn't somebody who needs to be seen over PNES? Explain? Are they that severe as to warrant back-seating somebody with a potential acute coronary syndrome?


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## Dada Simba Detuned (Feb 18, 2013)

*You are assuming that I am choosing to be your patient...*

which is not usually the case. I let someone call an ambulance about 3 weeks ago voluntarily because I had a noro-virus type of infection and could not stay hydrated and needed IV hydration.

The rest of the time OTHER people call and my choices are to comply or be "Section Twelved" (in MA). My PNES scare people and/or they have potential liability concerns that require them to call 911 as part of their job. So I comply because I basically have to or I get committed. I don't CHOOSE to get in the ambulance unless I'm told I will be taken against my will if I don't comply. 

Simba



Rocketmedic40 said:


> 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.
> 
> ...


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## Aidey (Feb 18, 2013)

You practiced health care related law, I'm surprised you haven't figured out a way to avoid being transported and not have a section 12 invoked.


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## Dada Simba Detuned (Feb 18, 2013)

*So you are again judging me...*

What do you know about how many years I have worked more than 40 hours a week and paid into the social security system. Do you know how many hours a week I work right now WITH my PNES? I'm sorry that you feel that I am not entitled to live and work with a medical condition that is currently beyond my control, but that is really your problem not mine. Try not to take it out and me and others like me when you are doing your job! 




Rocketmedic40 said:


> 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._


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## RocketMedic (Feb 18, 2013)

You could compose your reply in Word and copy/paste it in...

If you're aspirating or suffering from acute complications, you're going to end up getting Real Medicine. Psychotherapy and other fields are great for fixing long-term mental-health problems, less so for preventing acute physiological death. If you present to us as a complete unknown, we're going to treat you based on the most-likely and most-common causes of symptoms until we have more information.

Also, "trauma" makes us think of things far worse than pats on the back. You're not suffering from trauma. You're suffering from psychological reactions to past insults that may have included trauma. When you use the word 'trauma', you put thoughts of traumatic brain injuries, bleeds, etc into our minds. 

Us- "Hey, he's seizing...or at least moving oddly. What do you think, partner?"
You- "I experienced a TRAUMA! and I'm having a PNES incident!"
Us- ??? Like a fall? Help me out here, what's going on?"
You- "A TRAUMA!"
Us- "Well, we have an unknown here."

That's what you're dealing with when you come across people who don't know what PNES is, or are not provided with the information to pick that out. As horrible as it sounds, emergency medicine is not built to screen zebras and gazelles from the herds of cloven animals. When I see ALOC + a report of a seizure or seizure-like activity, it's a seizure until otherwise proven.


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## Dada Simba Detuned (Feb 18, 2013)

*It's a liability problem*

there is currently no definitive way to rule out epilepsy in PNES patients, so during any given PNES episode I could be having an epileptic episode. When I try to refuse transport I am told that I do not have that option, so I comply. No health care provider who I have asked is willing to give me anything to facilitate the process of denying emergency care... mostly due to liability concerns... because I MIGHT be having a hypoglycemic or epileptic seizure and that don't want to be liable if something bad happens when I refuse treatment.




Aidey said:


> You practiced health care related law, I'm surprised you haven't figured out a way to avoid being transported and not have a section 12 invoked.


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## RocketMedic (Feb 18, 2013)

PoeticInjustice said:


> Type it in word, then copy and paste.
> 
> And a cardiac rule-out isn't somebody who needs to be seen over PNES? Explain? Are they that severe as to warrant back-seating somebody with a potential acute coronary syndrome?



In 3-15 hours, he's stabilized.
In 3-15 hours, that "hmm, I feel a little odd in my stomach and my chest hurt a bit a while ago" turns into a full-blown cardiac arrest. I watched it happen to my father-in-law- no tryponin, no ECG changes until the Fatal Death Spiral of NSR-Stach-Vtach-VF-asystole. I won't be leaving anyone in triage with even a hint of cardiac complaint to give emotional trauma a bed.

Psychological disorders = a bad day requiring mental health care.
Cardiac disorders = death/real disability.


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## Aidey (Feb 18, 2013)

Um, yeah. You still have the option to refuse. Even if it is an epileptic event you can refuse. People do it all the time.


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## Dada Simba Detuned (Feb 18, 2013)

*agreed...*

If I'm aspirating, I want you to treat me like any other patient who is aspirating.

And the nomenclature point is a good one... mental health and PTSD health professionals and survivors use the word quite differently than first responders (I've worn all of those hats at some point).

When I use the word "trauma reaction" I mean a state similar to shock that is precipitated by current stimuli (internal and external) that trigger physiological reactions that are likely due unresolved emotions about past "trauma." Does that make sense?



Rocketmedic40 said:


> You could compose your reply in Word and copy/paste it in...
> 
> If you're aspirating or suffering from acute complications, you're going to end up getting Real Medicine. Psychotherapy and other fields are great for fixing long-term mental-health problems, less so for preventing acute physiological death. If you present to us as a complete unknown, we're going to treat you based on the most-likely and most-common causes of symptoms until we have more information.
> 
> ...


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## RocketMedic (Feb 18, 2013)

Dada Simba Detuned said:


> there is currently no definitive way to rule out epilepsy in PNES patients, so during any given PNES episode I could be having an epileptic episode. When I try to refuse transport I am told that I do not have that option, so I comply. No health care provider who I have asked is willing to give me anything to facilitate the process of denying emergency care... mostly due to liability concerns... because I MIGHT be having a hypoglycemic or epileptic seizure and that don't want to be liable if something bad happens when I refuse treatment.



If I read this right, you're asking for medications and an AMA? That's a lot of liability on us. 
If you're alert and oriented to your condition and your situation and you're not dying, I have no problem letting you go about your twitchy business.
"Do you want to go to the hospital? No? Bystander, it's ok, he doesn't want to go." Problem solved. If you want random injections of calcium and then to be released...well, I'm not doing that. You either ride the train or you don't, and asking a paramedic with 2.5 years of votech to start using his drug box in a way that will make him unemployed in a hurry is not going to get you too far with off-label drug uses.


Also, IV rehydration due to norovirus isn't exactly an emergency for most folks. Asking for unique, personalized care and then using the EMS system for urgent-care or sick-call matters isn't exactly the way to make your local paramedics think "wow, this guy has a totally legitimate medical complaint."


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## Dada Simba Detuned (Feb 18, 2013)

*Um... not in MA*

If I try to refuse, they will physically force me to go... possibly precipitating an even more severe PNES... which leads to involuntary hospitalization and commitment with benzos and haldol... been there, done that... until you try to refuse care/transport under my circumstances in my city and state please don't tell me what my options are.



Aidey said:


> Um, yeah. You still have the option to refuse. Even if it is an epileptic event you can refuse. People do it all the time.


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## RocketMedic (Feb 18, 2013)

Dada Simba Detuned said:


> If I'm aspirating, I want you to treat me like any other patient who is aspirating.
> 
> And the nomenclature point is a good one... mental health and PTSD health professionals and survivors use the word quite differently than first responders (I've worn all of those hats at some point).
> 
> When I use the word "trauma reaction" I mean a state similar to shock that is precipitated by current stimuli (internal and external) that trigger physiological reactions that are likely due unresolved emotions about past "trauma." Does that make sense?



When I think trauma, I think of something damaged or disrupted physically, ie "that humvee transmission was just propelled through your torso" or "hmm, that looks a lot like a concussion" or "hmm, that seems like a tear of something." Not 'unresolved emotions about past trauma.'

To be honest, if I found you in an urban setting with you babbling on about trauma and PNES, I'd probably be looking for a fall or something as an MoI. "Psych problem" covers your complaint far more accurately in the emergency medical lexicon.


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## Aidey (Feb 18, 2013)

You, someone with a legal education, are telling me it is perfectly legal to be physically forced to go to the hospital where you are not a threat to yourself or others and are legally competent to make decisions? I find that extraordinarily had to believe.


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## Dada Simba Detuned (Feb 18, 2013)

*I personally do not have a Dx of fibro*

But some of the medical literature shows a correlation. It's not clear whether the fibro is considered to be "psychogenic pain" for those patients or not.

I DO have chronic pain, but I'm almost fifty and have had a bad colles fractures with subsequent complications and surgery, hip and knee surgery after a bad car accident, and multiple sports injuries and injuries sustained while riding as an urban bike commuter. So most of it is not of unknown etiology! 



n7lxi said:


> 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.


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## RocketMedic (Feb 18, 2013)

Dada Simba Detuned said:


> If I try to refuse, they will physically force me to go... possibly precipitating an even more severe PNES... which leads to involuntary hospitalization and commitment with benzos and haldol... been there, done that... until you try to refuse care/transport under my circumstances in my city and state please don't tell me what my options are.



Um...you literally must be doing something wrong. AMAs are fairly legal across the nation.


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## the_negro_puppy (Feb 18, 2013)

Dada Simba Detuned said:


> there is currently no definitive way to rule out epilepsy in PNES patients, so during any given PNES episode I could be having an epileptic episode. When I try to refuse transport I am told that I do not have that option, so I comply. No health care provider who I have asked is willing to give me anything to facilitate the process of denying emergency care... mostly due to liability concerns... because I MIGHT be having a hypoglycemic or epileptic seizure and that don't want to be liable if something bad happens when I refuse treatment.



long term EEG?

May I ask how many times have you been to hospital in the last 12 months with your condition?

Why did you need an ambulance ride for vomiting / norovirus? why didn't you get a ride to the ED if you needed IV hydration?

I view PNES in a similar fashion to people who self-harm by 'cutting' or other means. Many people do this to deal with 'trauma' and for other reasons.

If it is a psychological condition in which you, yourself are experiencing harm (banging head on concrete) and attending hospital frequently, perhaps you would be safer as an inpatient in a psychiatric facility?

I often see some people with chronic health problems (including psychological) identify so much with their condition that it becomes their life. When they are not at their doctor or the hospital every second day for their condition, they are spending time "raising awareness" or telling everyone online on the street about their condition, possibly trying to invoke pity and attention.


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## Dada Simba Detuned (Feb 18, 2013)

*You're welcome to come hang out with me in Boston and come along in the truck...*

... the next time I have a PNES! I don't like it (at all) and neither do most of my health care providers... but such is the state of our current health and legal systems (part of why I retired from the practice of law). :glare:



Aidey said:


> You, someone with a legal education, are telling me it is perfectly legal to be physically forced to go to the hospital where you are not a threat to yourself or others and are legally competent to make decisions? I find that extraordinarily had to believe.


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## Wheel (Feb 18, 2013)

Aidey said:


> You, someone with a legal education, are telling me it is perfectly legal to be physically forced to go to the hospital where you are not a threat to yourself or others and are legally competent to make decisions? I find that extraordinarily had to believe.



I agree. If you are A&Ox4 and can coherently explain your history and reason for seizure, you are free to sign the refusal. I think there may be something else going on in the situations if she is being physically forced to go to the hospital.


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## RocketMedic (Feb 18, 2013)

I strongly, strongly doubt Boston EMS is in the habit of involuntary detention, kidnapping, assault and battery.


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## systemet (Feb 18, 2013)

Dada Simba Detuned said:


> there is currently no definitive way to rule out epilepsy in PNES patients, so during any given PNES episode I could be having an epileptic episode.



The links / articles you posted earlier seem to suggest that you could dstinguish the two by the absence of epileptiform activity on an EEG during an observed episode.  

Granted, each new episode could represent a potential new-onset epilepsy, but if you're conscious and making purposeful movements during these episodes, then it's certainly not a tonic-clonic or 'grand mal' seizure.  It might resemble a "psychomotor" or complex-partial seizure, psychosis, or a drug-induced state.  



> When I try to refuse transport I am told that I do not have that option, so I comply. No health care provider who I have asked is willing to give me anything to facilitate the process of denying emergency care... mostly due to liability concerns... because I MIGHT be having a hypoglycemic or epileptic seizure and that don't want to be liable if something bad happens when I refuse treatment.



A hypoglycemic episode should be fairly easy to determine.  You measure a blood glucose level.  Granted, there could be some concern that you've seized due to a low glucose level and now the glucose has come up, but if you can explain your history it might be helpful.

I would also be reluctant to sign a refusal of care form on you, if you're having a PNES episode, because I don't want to be responsible if something happens to you later.  

That being said, if you can tell me in a calm and lucid manner that what I'm seeing is your previously diagnosed chronic health condition, that it's similar to previous episodes, and that you have someone responsible who can monitor your condition, and you have the means to call me back if you need further help, then I'd be willing to sign you off.  

You state earlier that you have a legal background.  If you refuse my treatment, which you're entitled to, then I have to demonstrate that you're incompetent.  And then I have to call a police officer, convince them that this is the case, and that they should arrest you and accompany me to the hospital.  If you're lucid and alert throughout all of this and can demonstrate your competence, I can't kidnap you.

The problem, I assume, is that these episodes impede your ability to communicate and demonstrate that you're competent?  This must be very frustrating.


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## VFlutter (Feb 18, 2013)

You claim that many of us do not understand your condition and that we are being insensitive but do you understand our position? You say that you have worked with health care providers but have you ever done a ride along or encountered the type of deliberately faked seizures many of us are talking about?

Go shadow a day in an urban ER. I am willing to bet you will see at least one person faking a seizure and using your legitimate medical condition as an excuse to get what they want. It is truly unfortunate and frustrating because it does make us numb to those, like you, who actually suffer from those conditions. Everyone gets burned out when 99 times out of 100 a person is crying wolf. I am sorry you are the 1 out of that 100 who isn't but the true blame falls on those who purposely abuse the system. 

Can you imagine how frustrating it is to have a person who is obviously faking a seizure taking up a ER bed when others are suffering in the waiting room. To have a person fall to the ground and flail around screaming and yelling for dilaudid? This is the norm for many of us.


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## Dada Simba Detuned (Feb 18, 2013)

*I get it, really I do...*

But there are still things you can do to help minimize the psychological distress experienced by your patients that in the case of PNES can exacerbate their acute symptoms. A lot of my points apply to other health conditions as well, but as I am not diabetic or have Alzheimers, etc. I cannot comment from that perspective as a patient. I do not at all mean to insinuate that any first responder means me harm... but it doesn't change the fact that if you scare me I may not be able to control my physiological responses. I am not saying that I am not accountable for my actions... but that doesn't mean that I can always control them at the time of the acute PNES episode. l spend thousands of dollars and hours of my life trying to better manage my health condition... I have better things to do than waste your guys time. Unfortunately, I do not always have that choice... trust me if I could just "NOT HAVE THEM" I would have done so by now! 



Rocketmedic40 said:


> 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.
> 
> ...


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## RocketMedic (Feb 18, 2013)

Chase said:


> You claim that many of us do not understand your condition and that we are being insensitive but do you understand our position? You say that you have worked with health care providers but have you ever done a ride along or encountered the type of deliberately faked seizures many of us are talking about?
> 
> Go shadow a day in an urban ER. I am willing to bet you will see at least one person faking a seizure and using your legitimate medical condition as an excuse to get what they want. It is truly unfortunate and frustrating because it does make us numb to those, like you, who actually suffer from those conditions. Everyone gets burned out when 99 times out of 100 a person is crying wolf. I am sorry you are the 1 out of that 100 who isn't but the true blame falls on those who purposely abuse the system.
> 
> Can you imagine how frustrating it is to have a person who is obviously faking a seizure taking up a ER bed when others are suffering in the waiting room. To have a person fall to the ground and flail around screaming and yelling for dilaudid? This is the norm for many of us.



My wife waited at UMC-El Paso for two hours with what turned out to be PID because of one of these patients. I literally called my PA (active duty at the time) and met him at the WBAMC urgent-care clinic to get her treated in something like a timely fashion.


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## Dada Simba Detuned (Feb 18, 2013)

*I have done all that you suggest as part of my past jobs...*

I worked in an emergency room in the 80s and as part of my job as an emergency response planner I did the rest... I get it... but just because many of your patients are "faking and drug seeking" in your opinion doesn't mean that we all are. And  PNES is believed to be much more common that previously understood. 

I worked in the medic tent at Occupy Boston... trust me I know what it's like to have combative drug seeking folks come at you in a tent when you're working an overnight shift all alone. I HEAR what you are saying... but it doesn't change the fact that many of my and others' experiences are unnecessarily negative. 



Chase said:


> You claim that many of us do not understand your condition and that we are being insensitive but do you understand our position? You say that you have worked with health care providers but have you ever done a ride along or encountered the type of deliberately faked seizures many of us are talking about?
> 
> Go shadow a day in an urban ER. I am willing to bet you will see at least one person faking a seizure and using your legitimate medical condition as an excuse to get what they want. It is truly unfortunate and frustrating because it does make us numb to those, like you, who actually suffer from those conditions. Everyone gets burned out when 99 times out of 100 a person is crying wolf. I am sorry you are the 1 out of that 100 who isn't but the true blame falls on those who purposely abuse the system.
> 
> Can you imagine how frustrating it is to have a person who is obviously faking a seizure taking up a ER bed when others are suffering in the waiting room. To have a person fall to the ground and flail around screaming and yelling for dilaudid? This is the norm for many of us.


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## RocketMedic (Feb 18, 2013)

Dada Simba Detuned said:


> But there are still things you can do to help minimize the psychological distress experienced by your patients that in the case of PNES can exacerbate their acute symptoms. A lot of my points apply to other health conditions as well, but as I am not diabetic or have Alzheimers, etc. I cannot comment from that perspective as a patient. I do not at all mean to insinuate that any first responder means me harm... but it doesn't change the fact that if you scare me I may not be able to control my physiological responses. I am not saying that I am not accountable for my actions... but that doesn't mean that I can always control them at the time of the acute PNES episode. l spend thousands of dollars and hours of my life trying to better manage my health condition... I have better things to do than waste your guys time. Unfortunately, I do not always have that choice... trust me if I could just "NOT HAVE THEM" I would have done so by now!



Simba, I understand that you don't like being restrained or sedated, but from our point of view, if we're restraining or sedating you, you're a threat to yourself or others. I'm not going to take the risks associated with transporting you unrestrained alone in the back of an ambulance on the 20% chance you might get aggressive with me when I can simply restrain you and spare us both a fight. I don't let people randomly flail in the truck. That's how paramedics get hurt and fired.


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## Dada Simba Detuned (Feb 18, 2013)

*I'm sorry about your wife... but...*

MY point is that if my head is bleeding and I'm concussed and/or aspirating vomit I deserve attention before other patients who are not as acute... I am "one of these patients" and I have a right to appropriate and compassionate medical case as much as your wife, sorry but (I believe) that it is true!



Rocketmedic40 said:


> My wife waited at UMC-El Paso for two hours with what turned out to be PID because of one of these patients. I literally called my PA (active duty at the time) and met him at the WBAMC urgent-care clinic to get her treated in something like a timely fashion.


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## Dada Simba Detuned (Feb 18, 2013)

*I'm not asking you to...*

I'm asking you to listen to and respect me when I (try to through my stuttering) explain that I will remain much calmer if you let ME put the seatbelts on and let me get into the truck myself without you touching me unless I am actually falling down and about to hurt myself. It's common sense actually, but you'd be surprise at how hard it is to get folks to listen to you when you are stuttering and shaking... though most EMTs are much better (in my experience) than ED docs.



Rocketmedic40 said:


> Simba, I understand that you don't like being restrained or sedated, but from our point of view, if we're restraining or sedating you, you're a threat to yourself or others. I'm not going to take the risks associated with transporting you unrestrained alone in the back of an ambulance on the 20% chance you might get aggressive with me when I can simply restrain you and spare us both a fight. I don't let people randomly flail in the truck. That's how paramedics get hurt and fired.


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## the_negro_puppy (Feb 18, 2013)

Dada Simba Detuned said:


> MY point is that if my head is bleeding and I'm concussed and/or aspirating vomit I deserve attention before other patients who are not as acute... I am "one of these patients" and I have a right to appropriate and compassionate medical case as much as your wife, sorry but (I believe) that it is true!



Let me ask you this. Have you ever had a PNES alone at home or do you only ever have them when other people are around you?


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## RocketMedic (Feb 18, 2013)

Oh, if you're actually hurt, absolutely. 

If you're simply having an Emotional Event, Disagree.


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## Dada Simba Detuned (Feb 18, 2013)

*Both...*

A lot of the literature suggests than this is a dispositive criteria... they are DEF'y worse if witnessed by someone who makes me more anxious, either because they are scared or I think they will call 911. But I do have them alone at home (which is when it really sucks).



the_negro_puppy said:


> Let me ask you this. Have you ever had a PNES alone at home or do you only ever have them when other people are around you?


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## systemet (Feb 18, 2013)

Dada Simba Detuned said:


> 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 confused, how are you aspirating vomit if you're conscious?  Do you mean you're having small amounts of vomit enter your hypopharynx and trigger your cough and gag reflexes?  If you're truely aspirating then you probably need to be intubated and placed on a ventilator.  Have you had aspiration pneumonitis after these episodes?

You do appreciate, of course, that the rule-out cardiac case is also a rule-out cardiac case because they might be having an acute MI and be sitting in the waiting room developing long term disability and a shortened life expectancy with each passing minute?  



> 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).



I'm not offended, but I'd suggest that it might be inappropriate for a layperson to try and tell an ER attending how to practice medicine.



> So... in that case, I should be treated like any other potentially hypoglycemia-induced seizure patient.



And you should be.  Anyone exhibiting seizure activity, or potential psychogenic motor activity, or any sort of altered mentation should have their glucose checked and corrected if low.  Any crew that isn't doing this should be getting in trouble.



> 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.



Have you considered getting a medical alert bracelet that indicates "paradoxical reaction to benzodiazepines?".  Or to haldol?  This might help.  Unfortunately, if you're not able to communicate, this might just buy you some ketamine instead.

Obviously getting benzos is undesirable, but I'm sure you can see why this happens.  Paramedics respond while you're having an episode, have no idea what your prior history is, or that you have an idiosyncratic reaction to benzodiazepines.  They can't judge whether you're competent, so they default to transporting you to the hospital.  They don't want to injure you attempting to restrain you while you're flailing, or they suspect some sort of atypical seizure presentation, so they administer the benzodiazepines to prevent you from injuring yourself during restraint/transport.




> 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.



What's DBT?  Honest question, I just haven't encountered the term before.  I think what's being asked here is more, why are you going to the ER, and what are they doing for you there, if the benzodiazepines and haldol don't work?  And what would you prefer we did in the ambulance?

From reading between the lines, it sounds like you're not calling 911 yourself, but bystanders are calling for you when these events happen in public?  The best thing would be transport in a calm environment, lights low, no sirens, and being placed in a quiet room with minimal environmental stimulation for a few hours until it runs its course?  Is that correct, or is it a misrepresentation?



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



Thanks for answering them.  As a result of this conversation I'm going to be a little more educated next time I see someone with PNES.


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## Wheel (Feb 18, 2013)

How many of these episodes have you had in the last month?
How many times have you been transported to the ER in that time?
How many concussions have you had from this?
How many times have you aspirated?


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## Dada Simba Detuned (Feb 18, 2013)

*See, this is where I disagree...*

when my "emotional event" converts into systolic pressures north of 160 the hospital won't let me leave the ED until it goes down. No matter what I do or say. (Of course I also clinically present with other disturbing symptoms that don't look like a panic attack to them so it's hard for them to feel comfortable,) There is in my mind no "bright line" between mental and physical illness... it's a continuum. That being said, if someone's bleeding out and I just look like I'm having a grand mal but there's no electrical activity on my EEG... PULEESE go stop the other patients' bleeding!  



Rocketmedic40 said:


> Oh, if you're actually hurt, absolutely.
> 
> If you're simply having an Emotional Event, Disagree.


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## Dada Simba Detuned (Feb 18, 2013)

*As much as I would like to advocate on my own and others' behalf...*

This is getting a bit detailed and personal for posting on a public forum where I don't know most of you.

What is the relevance of these extremely detailed questions? I'll try to answer to the extent relevant to this discussion(s).



Wheel said:


> How many of these episodes have you had in the last month?
> How many times have you been transported to the ER in that time?
> How many concussions have you had from this?
> How many times have you aspirated?


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## Wheel (Feb 18, 2013)

I'm just curious as to how frequently this presents, and how frequently patients hurt themselves in these situations.


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## NomadicMedic (Feb 18, 2013)

I think we've gone as far as we can go with this thread The OP has offered some insight into PNES, And in return the paramedics here have offered insight into the rationale behind their treatment.

Rather than delve into the personal medical history of the OP… I think it's time to call this one done


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