Psychogenic nonepileptic seizures

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Dada Simba Detuned said:
I tried to post a hyperlink many times, and once the system finally did let me do so, I now find that I have been "blocked" by the moderator from any additional posts. I guess you folks aren't really all that interested in learning about PNES. Be well...
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Dude, you're posting. So obviously you can make additional posts.
 
Dada Simba Detuned said:
As someone who has been diagnosed and dealing with PNES for over two years, I am shocked that so many of you have the gall to judge these patients when you haven't fully educated yourselves. Try to exercise a little bit of compassion and when you have a few minutes (do your job and) read this: [this chat board will not allow me to include the link because I am a new user]. I can assure you that when I am transported by ambulance to an ED it is NOT what I want to be doing or where I want to be, and "telling me to cut it out" is not going to help me control my behavior. I am a sexual trauma survivor who has a REAL condition that is NOT malingering or drug or attention seeking... I'm actually benzo intolerant and more often than not have a paradoxical reaction to any benzos or sedation. Stop judging and try to exercise a little compassion while doing your job! And don't ever come to my aid during a seizure where I am (involuntarily) slamming my head against a concrete patio... because if you start telling me to "cut it out" I'll probably give you reason to "Section 12" me (in MA)!
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OK, I get it. Yes, there are folks who have seizureform activity due to psychological factors which will be clinically confounding, not dissimilar to conversion disorder cases (formerly called "hysteric") of blindness and paraplegia or paresthesia. Benzo's wouldn't help except by "snowing" the pt and reducing anxiety...unless they have paradoxic response to benzo's, in which case it may be wasted.

Since they don't conform to clinical findings for a true clonic/tonic seizure, and meds don't help as they would in a tonic/clonic, they present clinically identical to factitious seizures.

Maybe such patients need to carry a card or such from their practitioner to avoid being over treated by responders?

You must understand that there are SO MANY, many more factitious seizure patients, though, that the subject is a sore one for us and psychologically induced seizures are not a subject of protocol or teaching. Just as shouting at you will not make your seizureform activity go away, threatening and railing against the members of this forum will noit make us go away. Quite the opposite.

Thanks for the citation, I for one am interested. Did we miss the OP's point and get swung out on Munchausen's and factitious seizures prematurely?
 
Dada Simba Detuned said:
I tried to post a hyperlink many times, and once the system finally did let me do so, I now find that I have been "blocked" by the moderator from any additional posts. I guess you folks aren't really all that interested in learning about PNES. Be well...
Click to expand...
If you're going to put me on probation for not posting a hyperlink when the system was blocking me from posting hyperlinks (because I am a new user), then clearly no one wants to hear what I have to say here anyway. I wish you all the best, and I hope that none of you ever has to experience some one you care about being re-traumatized by a health care provider who has not educated themselves about PTSD and PNES. For those of you who do provide first responder care with compassion and professionalism, I sincerely thank you. Be well...
 
The system will not allow me to do any of that...

I was blocked and my hyperlink was deleted after I was finally able to post it.

PoeticInjustice said:
It's not impossible. She provide the information you were required to put. You didn't put it. She removed the quoted information. Repost it with the appropriate required information and I doubt there would be a problem.
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You haven't been blocked, and the rule wasn't impossible for you to follow. Just because you can't post the hyperlink does not mean you can't provide the other information needed to meet the Fair Use Principle. Copyright violations on forums have resulted in lawsuits before, and we aren't going to risk it.
 
Please look at prevalence rates for PNES

It is likely not as rare as you think. I do not deny that some folks are "faking it," but for those of us who are not... treating us that way can be potentially quite harmful. I can provide lots of information from the perspective of a patient advocate and substantial medical research if you are interested. But I have been censored on this board so I'm not that interested in wasting my time if my comments and citations are to be deleted (I have better things to do with my time). Please feel free to contact me via PM if you are actually interested in learning more about PNES, and it's connection to PTSD and in particular sexual trauma survivors. Thanks to those of you who DO do your job with compassion... be well... Simba

mycrofft said:
OK, I get it. Yes, there are folks who have seizureform activity due to psychological factors which will be clinically confounding, not dissimilar to conversion disorder cases (formerly called "hysteric") of blindness and paraplegia or paresthesia. Benzo's wouldn't help except by "snowing" the pt and reducing anxiety...unless they have paradoxic response to benzo's, in which case it may be wasted.

Since they don't conform to clinical findings for a true clonic/tonic seizure, and meds don't help as they would in a tonic/clonic, they present clinically identical to factitious seizures.

Maybe such patients need to carry a card or such from their practitioner to avoid being over treated by responders?

You must understand that there are SO MANY, many more factitious seizure patients, though, that the subject is a sore one for us and psychologically induced seizures are not a subject of protocol or teaching. Just as shouting at you will not make your seizureform activity go away, threatening and railing against the members of this forum will noit make us go away. Quite the opposite.

Thanks for the citation, I for one am interested. Did we miss the OP's point and get swung out on Munchausen's and factitious seizures prematurely?
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Aidey said:
You haven't been blocked, and the rule wasn't impossible for you to follow. Just because you can't post the hyperlink does not mean you can't provide the other information needed to meet the Fair Use Principle. Copyright violations on forums have resulted in lawsuits before, and we aren't going to risk it.
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To be fair, Righthaven got [female dog] slapped by the judges in cases that actually went to trial. So bad that they aren't even in existence any more.
 
My providers will not recommend carrying such a card because of potential liability... there is some co-morbidity with PNES and epileptic seizures and so the neither my neurologists or my psychiatrists are willing to provide any support for "labels" that my lead a provider to ignore what may be an actual epileptic seizure.
 
Yeah, but something tells me that Matt wouldn't even want it getting to the point a Judge is involved...
 
Do you mean status epilepticus?...
 
I intended to follow the rules, I am human

You may already know that people with severe PTSD also have left frontal-lobe types of cognitive deficits/symptoms... so even though I likely am as "smart" as at least some of you, it is almost 1am where I live and it's a bit hard to figure this system out when you're almost 50 years old and have had multiple PNES in the last few days (some of which involved whacking me head on rather hard objects like ED floors)! So please forgive me if I'm a bit slow tonight ;)

JPINFV said:
To be fair, Righthaven got [female dog] slapped by the judges in cases that actually went to trial. So bad that they aren't even in existence any more.
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Dada Simba Detuned said:
I tried to post a hyperlink many times, and once the system finally did let me do so, I now find that I have been "blocked" by the moderator from any additional posts. I guess you folks aren't really all that interested in learning about PNES. Be well...
Click to expand...

Dada Simba Detuned said:
If you're going to put me on probation for not posting a hyperlink when the system was blocking me from posting hyperlinks (because I am a new user), then clearly no one wants to hear what I have to say here anyway. I wish you all the best, and I hope that none of you ever has to experience some one you care about being re-traumatized by a health care provider who has not educated themselves about PTSD and PNES. For those of you who do provide first responder care with compassion and professionalism, I sincerely thank you. Be well...
Click to expand...

You can still post the link, not hyperlinked, and the required information. The rules have nothing with not wanting to hear what you have to say. I am sure if you published a paper or wrote an article you would expect the same professional respect.

Please do not patronize us and act like we are all uneducated brutes who go around traumatizing patients. I can assure you that most of us on this website, including myself, are very educated and more than competent.

Righteous indignation was the perfect description....

Dada Simba Detuned said:
so even though I likely am as "smart" as at least some of
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I am sure you are. I can copy and paste like a champ too
 
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There was never a block on your account.
 
Chase: I am sure that is true

But I just spent 15 minutes posting a bunch of information along with citations, only to have it deleted and then I was blocked from posting until someone lifted that block a few minutes later. So.. either I am a COMPLETE tech moron (which is possible) or someone shut down my ability to post and then undid it. Which I took as a sign that it's not worth my time to continue here. As a health care provider myself, I choose to believe that MOST of you are compassionate and professional. All of your posts lead me to believe that you would absolutely be someone I would trust with myself or a loved one in a medical crisis... thanks for your thoughtful reply(ies).

Chase said:
You can still post the link, not hyperlinked, and the required information. The rules have nothing with not wanting to hear what you have to say. I am sure if you published a paper or wrote an article you would expect the same professional respect.

Please do not patronize us and act like we are all uneducated brutes who go around traumatizing patients. I can assure you that most of us on this website, including myself, are very educated and more than competent.

Righteous indignation was the perfect description....
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Look, as the CL who has been online I can assure you I did not block you from posting. I removed the posts that were a copyright violation and I explained to you privately that you were welcome to repost the information as long as you followed the Fair Use Principle. Your information was not cited properly per the Fair Use Principle which is why it was removed.
 
Dada Simba Detuned said:
I have no idea what that means (mebbe I'm just too old or dumb to get the joke)... but I assure you that I am female!
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It was very tongue in cheek... and referencing the joke that there are no women on the internet.


Also, any reason to post a link to that time sink TV Tropes is worth it.
 
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