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Psychogenic Non-Epileptic Seizures (not “pseudoseizures”)

Pseudoseizures

If you’ve played in the emotional and mental health arena for any length of time, you’ve likely heard the term, pseudoseizure. Interesting stuff, to say the least. Let’s learn, okay?

Before we go any further, let’s set the record straight. The term, pseudoseizure, is old-school. Correct is, psychogenic non-epileptic seizure (PNES).

And while we’re at it, let’s do some defining. A seizure occurs when the electrical firing of nerve cells is up to four times greater than the norm. Epilepsy is a pattern of repeated seizures. Epileptic simply refers to anything having to do with epilepsy.

A PNES, on surface, resembles an epileptic seizure; however, the errant electrical firing we just discussed isn’t happening. But let’s be clear, someone experiencing a PNES is absolutely not “faking-it.” There’s no pretense involved.

Fascinatingly enough, 10-30% of PNES patients also have epilepsy.

So how might a medical professional differentiate a PNES from an epileptic seizure? The surest thing is something known as, long term video-EEG (electroencephalogram). Simply, the goal is to have an episode or two captured simultaneously on the EEG and the video. It’s then the tale can be told.

There are other differentiating factors. More common to a PNES is biting the tip of the tongue, seizures lasting more than two minutes, seizures having a gradual onset, the eyes being closed during a seizure, and side-to-side head movements.

Manifestations uncommon in a PNES are automatisms (automatic complex movements during the seizure), severe tongue biting, biting the inside of the mouth, and incontinence.

Finally, upon examination, PNES patients tend to resist having their eyes forced open. They’ll also stop their hands from hitting their face if a hand is dropped over the head; and they’ll fixate their eyes in a manner that suggests errant nerve firing isn’t an issue.

It’s known that some 75% of PNES patients are women. The typical age of onset is the late-teens to early-20s. It’s not unusual for PNES patients to have a history of multiple unexplained medical problems. And a history of emotional and mental health disorders, such as major depressive disorder or an anxiety disorder, is common. Comorbid personality disorders are not unusual.

So what’s the cause of PNES syndrome? Good question, ’cause no one really knows for sure. Since there’s often a personality disorder present, childhood trauma is frequently brought into the mix. So it’s a matter of an expression of repressed psychological harm in response to trauma such as child abuse. Interestingly, when motor involvement is a characteristic of the PNES, the abuse was typically perpetrated by the father.

Other possible causes are bullying in adulthood, learning disabilities, and dysfunctional family dynamics.

How is PNES syndrome treated? First of all, after diagnosis, a very delicate conversation has to take place between the care provider and patient. For someone emotionally fragile, hearing his/her seizures are, in effect, “in their head” may be a bit tough to handle. When the situation is stable, it’s a matter of openly and frankly explaining what’s likely going on.

Common psychotherapies employed are cognitive behavioral and insight-oriented. Group work is frequently used. Of course, any comorbid diagnoses (major depressive disorder, panic disorder, etc.) are treated simultaneously. Antidepressants, in some cases, have been found to be helpful.

But I have to shoot straight with you – lasting positive outcomes are tough to achieve.

So there you have it, a quick bit of learning featuring psychogenic non-epileptic seizures. I love researching and presenting this stuff. Can you tell?

  • Joyinthevalley2

    Could the seizures have to do with medications? How well has this possible cause been studied?

    • Hi Prudence. Thanks for visiting, and for your comment. You know, medications may somehow be involved – and I don’t know how much study the topic has received. My gut says it’s a bit more complicated than that. I’m thinking it’s a fascinating and mysterious transference of emotional and mental distress to the body. Don’t know if you’ve heard of something known as Conversion Disorder. Come to think of it, I’m going to do a piece on it tonight. In the meantime, Google it – it’s captivating. Again, thanks for your comment – always good hearing from you.

  • Vuilverwerking

    Hi,
    I have Epilepsy for 30 years. Used a lot of AED (Anti Epileptic Drugs), Depakine, Trileptal, Keppra, etc.
    The last 2 years my Epilepsy & Aura’s get worse.
    After 1 week in the hospital and 4 weeks of observation in a clinic i was Diagnosed ‘Epilepsy & PNES’.
    The worst thing i did short after this diagnose was a suicide attempt.
    Lucky for me the wire could not hold my weight. Now i am in a closed clinic for 2 weeks with no results.
    The big problem for me now is that a lot of the new AED have bad side effects for Psychlogical things.
    Epilepsy, PNES & AED is most of the time a bad combination i think.

    • First of all, thank you very much for visiting chipur – and commenting. Sharing your personal experiences benefits us all. It’s such a great way to learn, and to develop/express empathy. You mentioned being diagnosed with epilepsy and PNES. Research tells us 10-30% of patients with PNES also have epilepsy. Have you tried the new AEDs that have difficult side effects? Would you mind sharing names? Again, thank you for participating; and I’m so glad the wire couldn’t hold your weight!

      • timothy ray wallace

        i do not have depresstion or anxity. what can they do for me? i was dieose with pnes an i dont think i have pnes i had a grandmama seizure when i was 8 years old. dr.westier said i have pnes? what should i do? any studys i can go to?

      • Hi There! I really appreciate your visit to chipur. And your comment is valued. I can tell you’re frustrated. And, of course, the fine line between epileptic seizures and PNES is hard to distinguish. I don’t know Dr. Westier’s area of specialty, but I’ll assume he/she is a neurologist. I also don’t know how long ago his/her diagnosis was made. If he/she isn’t a neurologist, perhaps you could be referred to one. I’ve included two links that may be of assistance. The second one is an epilepsy.com forum. Again, thanks for your visit and comment. As I always say, sharing is how we all learn!
        http://en.wikipedia.org/wiki/Psychogenic_non-epileptic_seizures
        http://www.epilepsy.com/discussion/990468

  • Received an email from a chipur reader just yesterday regarding this article. I asked her if I could share our exchange (anonymously) – she was fine with it. I’ll post more as I hear more from her…

    Just wanted to drop a line to say I just recently discovered your page. I have been troubled by psychogenic nonepileptic seizures off and on for 35 years–since I was in college. Lately they have returned and I had one at work (teacher) where I fell down the stairs. I am home today because I feel and look awful (black eye, etc.) I just heard about psychological conflicts, maybe being the reason for the seizures. I don’t know which way to turn. I take Paxil and Clonopin.

    Hi “Susan”…
    First of all, thank you so much for visiting chipur and emailing me. It’s appreciated. Ouch! Falling down stairs and wearing a black eye can’t be very much fun. At school, no less. Hope you mend quickly.

    You say you’ve been troubled by PNES since your college years. Was it officially diagnosed? My other question is, how “off and on” has the “off and on” been over the years? Speaking of which, can you connect any dots regarding why they’ve booked a return engagement? Oh, you’re taking Paxil and Klonopin. May I ask why (as if I don’t know)?

    Yes, I believe there’s likely a psychological base to PNES. However, one has to be sure it’s PNES v. epileptic seizures.

    Again, thanks for your visit and dropping me a line…

    Bill

  • Marianne

    I was hospitalized twice due to shaking and jerking last summer. I had two eeg’ s which came back normal. I was told I had pseudoseizures. I felt insulted. A psychiatrist was sent in.She thought I had conversion disorder. Lol. I refused her meds. I agreed to.go to.a counselor. I saw a psychologist by my choice. I ended the sessions after a few meetings. He had no issues with that. I studied PNES and see no evidence to this day that I have this! I requested a test for sleep apnea which came back positive. I requested to see an ENT and saw him after.much.urging. I found out I have moderate to severe hearing loss!!!! Well the ,500 mg of keppra the neuro put me on last year was just upped to ,1,000 mg. The more severe symptoms are under control again. Thanks to my GP!!!

  • Marianne

    I just thought my case is a bit mindboggling!

  • Marianne

    I told my GP I could not accept the PNES diagnosis and explained to.her why! I welcome any comments.

  • Marianne

    By the way, I also have nerve damage (proven fact) and I am taking gabapentin for this. Nerve pain does precede the shaking and jerking. PNES is commn among those with emotional issues and those with little education. I am certainly not known as either. I am completing my last course toward. my master’s degree with a high average right now. Just some food for thought.

    • Hi Marianne!
      Sure appreciate your Chipur visit and participation. Glad you were assertive in challenging your PNES diagnosis. It sure as heck worked, didn’t it? Wanted to take issue with just one thing in this post. You submit PNES is common among “those with little education.” Can’t buy that, unless you can cite some proof. At any rate, thank you for your contribution and I’m glad your situation is under control.
      Bill

      • Marianne

        Thanks for your reply. I have read this info. from more than one source. I will have to look for it. I think it is assumed that the under educated cannot easily find solutions to their problems. I will get back with.you. Thanks once again.

  • Marianne

    I was 50 years old last year and newly diagnosed,! This seems awfully.strange too.

  • Marianne

    Also.take a look at Somotoform Disorders.. Medical Dictionary says there is a lower incidence of Conversion Disorder among the higher educated. It has also been noted that many patients no longer have symptoms a few weeks after a diagnosis of Conversion Disorder. I guess some come to the reality that.there is nothng really physically wrong with.them.

    • So noted, Marianne! Really, I appreciate your participation and contribution here. All information is good information – and helpful.
      Bill

  • Andrea Bromley Jameson

    Great article! It means a lot to people with PNES that you started by clarifying the term pseudoseizure is outdated. Preach out to us a lot wanting that mentioned. My husband was diagnosed with PNES about a year and a half ago. We started an awareness page and have connected with so many people! My husband did not think he was stressed. He did not realize he had PTSD, he did not want to accept PNES because of stigmas associated with mental illness and the way it was presented. He takes an anti depressant/ anxiety med. He occassionally taked depakote. it is a seizure medication but medicactions don’t help PNES. Why does he take it then? Docs perscibe it and it does have things in it that help with headaches which lead so some of his seizures and also depakote helps anxiety, another thing that triggers PNES. Hopitals always want to pump him up with anti seizure medications once his seizures start and they don’t help. When I get them to only use the depakote it seems to be okay and not make him go crazy like he’s druuged like the other meds do.

    • Hi, Andrea!

      Glad you stopped-by. Even more glad you found something with which you could connect. And let’s get the correct terminology, right? Amazing how using the wrong term/verbiage generates stigma, isn’t it? Hey, if you’d like to share a link to your awareness page, pop it in a comment.

      Great info, Andrea, and I appreciate the visit and contribution…
      Bill