Psychogenic nonepileptic seizures

[Dada Simba Detuned]

Well, when I tried to post the sytem told me I was no longer allowed access...

for about five minutes after someone deleted all of the posts with the quotes and links in them... so maybe I'm just too dumb to use this board... :sad:

There was never a block on your account.

 

[bigbaldguy]

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).

There was no modification of your posting ability. One of your posts was minimally altered. While it was being altered it would have appeared missing. Once the modification was finished it dropped back into view.

 

[mycrofft]

I suggest a strong dose of "tincture of take a deep breath" and come back in the morning...Pacific Time.

 

[Dada Simba Detuned]

AI think that they are usually relatively easy to differentiate

There are a number of tricks that diagnosticians use to DDx PNES versus epileptic seizures... there are also things that most people will not do voluntarily if they are "faking it." The issue (I believe) is that first responders often do not have the time or tools (or job responsibility) to figure it out... the most compassionate care I received generally assumes that I am having a legit PNES because I have told them I have that diagnosis... but both I and the first responders understand that unless they have an EEG and video camara and neuro specialist in their truck that an emergency transport isn't really the place and time for that exercise. So as long as I am oriented and coherent, they respect what I say like any other patient... when I am no longer able to control whacking my head against dangerous objects, they switch to "seizure care" mode and I don't get to ask them to follow my instructions/requests anymore :wacko:

Here's the problem. Generalizing a bit, there are three different types of "seizures." Real seizures, psychogenic seizures (seizure like activity without EEG change, but not in control of the patient), and malingering seizures ("fakers" looking for some sort of external benefit). Unfortunately, from a "The patient is seizing right now and we have nothing to go off of besides a history and physical," the psychogenic and the malingering seizures are going to look pretty similar.

 

[JPINFV]

There are a number of tricks that diagnosticians use to DDx PNES versus epileptic seizures... there are also things that most people will not do voluntarily if they are "faking it."

...and some of those things people with psychogenic seizures won't do either. Not to mention that not all genuine seizures are the same (absence vs cluster (and simple vs complex) vs generalized).

However, since ambulances don't come with EEGs (the 60 cycling alone would make them useless), there's really no definitive way to declare a pseudoseizure a pseudoseizure unless the patient popped out of it and said, "I suffer from pseudoseizures."

 

[Dada Simba Detuned]

There was no modification of your posting ability. One of your posts was minimally altered. While it was being altered it would have appeared missing. Once the modification was finished it dropped back into view.

Then I guess I'm just too dense and too tired to understand the messages from your system, because I'm fairly sure it said something along the lines of "You do not have access to this {something or other}"... mea culpa

 

[Aidey]

If you were trying to access one of your posts that was moved that will happen. It doesn't mean you were blocked from posting, just that you no longer were able to see what you were trying to see.

 

[Dada Simba Detuned]

Well...

... both deep breaths and tinctures (properly administered) can be quite useful in managing the symptoms of PNES... but I'm not sure they'll help me be less of a online posting board confusing messages moron

I suggest a strong dose of "tincture of take a deep breath" and come back in the morning...Pacific Time.

 

[Dada Simba Detuned]

If you were trying to access one of your posts that was moved that will happen. It doesn't mean you were blocked from posting, just that you no longer were able to see what you were trying to see.

That's helpful to know thanks... I have cognitive deficits (from the benzos that are often inappropriately administered to me and from the PTSD symptoms) so it's often very confusing for me when stuff just says I can't access it and doesn't explain why... OR I could just blame it on being old

 

[Dada Simba Detuned]

...and some of those things people with psychogenic seizures won't do either. Not to mention that not all genuine seizures are the same (absence vs cluster (and simple vs complex) vs generalized).

However, since ambulances don't come with EEGs (the 60 cycling alone would make them useless), there's really no definitive way to declare a pseudoseizure a pseudoseizure unless the patient popped out of it and said, "I suffer from pseudoseizures."

Agreed! Which is why I think the most respectful and medically appropriate approach is to treat all seizures like seizures... with the same protocols... because whether it's a legit PNES or epileptic seizure the recommended protocol is the same. But just because someone doesn't appear to be having a "stereotypical" seizure with post-ictal symptoms does not mean they are "faking it" or can control their involuntary motor responses to stimuli like flashing lights, loud unexpected noises, involuntary restraints, etc. In the interest of first responder and patient safety, as well as respecting the patients... I suggest starting out by ASSUMING that the seizures are legit until you have a good (educated perspective) reason to believe otherwise.

 

[Dada Simba Detuned]

Agreed! Which is why I think the most respectful and medically appropriate approach is to treat all seizures like seizures... with the same protocols... because whether it's a legit PNES or epileptic seizure the recommended protocol is the same. But just because someone doesn't appear to be having a "stereotypical" seizure with post-ictal symptoms does not mean they are "faking it" or can control their involuntary motor responses to stimuli like flashing lights, loud unexpected noises, involuntary restraints, etc. In the interest of first responder and patient safety, as well as respecting the patients... I suggest starting out by ASSUMING that the seizures are legit until you have a good (educated perspective) reason to believe otherwise.

P.S. When I tell some first responders that I have been diagnosed with PNES, they look at me like I am "cray cray" and treat me like an attention seeking or drug seeking I don't know what... UNTIL I start seizing tonic-clonic style and then they get nervous and don't know how to react because they then think I'm having a drug withdrawal or epileptic seizure!

 

[Dada Simba Detuned]

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.

There is a delay between my attempting to post and/or post and when your messages come through. I am fairly tech savvy but it is extremely confusing to be unable to access prior messages and post new messages at the same time you are posting that I will be moderated or my message deleted for not following the rules. I apologize for not following the rules, but I was trying... and it's not that clear how and why the system is blocking you when it does. Please feel free to remove ALL of my posting referencing being blocked if you'd like (because I cannot figure out how to do it myself)! - book smart but obviously chat board dumb Simba

 

[mycrofft]

Come back tomorrow morning.

 

[Dada Simba Detuned]

In case anyone is interested...

The whole reason I posted here was because I came here to read your thread after reading this:

"The topic for this month’s post came to me after finding a thread of comments made by emergency medical professionals (EMPs) about psychogenic non epileptic seizures (http://www.emtlife.com/showthread.php?p=299085). It was saddening to read how EMPs talked about how they are often berated by hospital staff for bringing in patients with non epileptic seizures. I hope reading this moves you to want to do something about it.

Psychogenic non epileptic seizures are a psychological condition. Early trauma sets in motion a lot of secondary problems. Self preservation activates defense mechanisms. Maybe not the best ones, but when you are being traumatized, they may be the only ones you have. Depression, anxiety disorders, post traumatic stress often co-exist with the psychogenic seizures.

There is nothing laughable about the condition. There is no shame in it. And most importantly, the person who carries it suffers deeply. After years of working with patients who have PNES, I have no doubt that there is nothing that most patients want than to get better. So why is it that so many health professionals continue to look down on the patient? Why are patients so often described as “fakers,” abusers of medical resources, and manipulators? Is it any wonder that patients try to hide the fact that their condition is psychological and not physical?

I think a lot of what is fueling this is ignorance.

How can we make it better? If we stay quiet and allow it to go on, we allow retraumatization to go on. I propose we do something to stop this. We need to become active in changing it.

All those who come in contact with non-epileptic seizures need to be educated. After reading the thread above, I started working with an EMT professional to put together an educational program that we hope to take to around the state. How about you? What can you do to help produce change?"

Text quoted in it's entirety from "The stigma of psychogenic non epileptic seizures (PNES) is still with us Posted by Lorna Myers on Jul 8th, 2011" on the PNES News page at http: // blog.nonepilepticseizures.com /

 

[Dada Simba Detuned]

Prevalence of PNES

"As for psychogenic non-epileptic seizures, an article from the year 2000 by Benbadis and Hauser reported: “The prevalence of psychogenic non-epileptic seizures is somewhere between 1/50 000 and 1/3000, or 2 to 33 per 100 000.”"

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

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]

For those interested in learning (a lot) more about Dx and Tx for PNES...

This is one of the more recent literature/research reviews on the topic(s):

Neuropsychiatr Dis Treat. 2012;8:585-98. doi: 10.2147/NDT.S32301. Epub 2012 Dec 10. Psychogenic nonepileptic seizures: a treatment review. What have we learned since the beginning of the millennium? Baslet G. Department of Psychiatry, Brigham and Women's Hospital, Harvard Medical School, Boston, MA, USA.

http://www.ncbi.nlm.nih.gov/pubmed/23251092

 

[Dada Simba Detuned]

A "lay user friendly" YouTube video re: PNES

http://www.youtube.com/watch?v=3s5CN7_JROs

 

[Clare]

If the seizure is severe enough then they'd get some intranasal midazolam from me, about the only thing we can do really, rest is up to hospital.

By severe enough I mean if it was continuous and non-breaking or recurring and the patient was e.g. becoming hypoxic or significantly hyperthermic or something like that.

Very interesting.

 

[Dada Simba Detuned]

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

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

:rofl: (This is me PNES'ing... because it's not actually funny to those of us who live this experience on a regular basis.)

Be well,
Simba

 

[JPINFV]