PNES A difficult conversation worth having

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AlohaBird

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Psychogenic Non-Epileptic Seizures (PNES)


Some basic references:
http://www.epilepsy.com/article/2014/3/truth-about-psychogenic-nonepileptic-seizures
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC321215/

This is a CWE thread about the subject from 2007:
http://www.coping-with-epilepsy.com/forums/f22/psychogenic-non-epileptic-seizures-2123/

And this one a little more recent from 2013:
http://www.coping-with-epilepsy.com/forums/f23/psychogenic-seizures-23412/


I think things have made some progress on the medical front in recent years. At least these seizures are no longer being called "pseudo-seizures" or "psychosomatic" which might be taken to suggest that someone was either faking it or imagining things.

The reference material for doctors urges that they use great tact in broaching the subject with patients and explaining it to them. That's nice.

There still seems to be no consensus on the cause of PNES. Some automatically jump to the conclusion of childhood trauma such as sexual abuse or the death of a loved one but others caution that this is not necessarily the cause for every case of PNES.

The thing that becomes abundantly clear in reading all this source material is that there still really is no definitive way to "run a test" and determine with any certainty if a person has seizures caused by something organically wrong with their brain or if they have PNES.

There are, of course, cases that are very clear such as structural problems from a head injury or tumor and obviously abnormal EEG readings.
But then there are a lot of other cases where no such "proof" one way or the other exists.

It also becomes clear that the problem of mis-diagnosis runs both ways. I suspect there are a lot of misdiagnosed cases on both sides who continue on without knowing.

Epileric shared his experience (on that thread above) that his case was dismissed as psychogenic and it wasn't until many years later that they found the lesion that was actually causing the problem. That is horrible!

OTOH there are a lot of people who are diagnosed with "idiopathic epilepsy" when they have never had an abnormal EEG reading. They are given pills which can become addictive. The "test" being that if you respond to medication, your seizures really are epilepsy not PNES. But then if you try to come off of the pills and start having seizures, is it because you really need the pills or because they had a placebo effect at first but now your body is addicted to them?
Not to mention all the health side effects which have been discussed in other threads.

I can't find the thread but I believe it was Emerald (?) who recently had the situation of one neuro telling her it was epilepsy and another saying it was PNES. When given the same information and two neuros don't even agree it is obviously not a clear cut diagnosis to make.

It also became clear to me in reading up on this subject just how very limited a diagnostic tool an EEG really is.

I'm not sure there is any one answer here. It would be interesting to hear people's experiences with this subject, being misdiagnosed one way or the other.

I think there has been a lot of stigma attached to PNES over the years from accusations that the person was "malingering", "faking it", or "imagining things" which then evolved into saying "You poor thing. Did your Daddy rape you?" as if that were sensitive.

Perhaps it is time to have the discussion without all of that. People who have PNES have seizures that are every bit as "real" as any others, they are just of a different origin and therefore need a different form of treatment.

Opinions, experiences, more info? Bring it on.
 
Hah! Every time I try to write PNES as an acronym the autocorrect for this site spells it out for me.
 
I have been reading up on PNES as well and stumbled on an article that says:
Despite the current available technical facilities, the mean latency between onset of PNES and final diagnosis as being non-epileptic and psychogenic is approximately 7 years.
I am not allowed to post links yet - so search "Clin Neurol Neurosurg. 2009 Jan;111(1):1-9. doi: 10.1016/j.clineuro.2008.09.028. Epub 2008 Nov 18.
Psychogenic non-epileptic seizures--diagnostic issues: a critical review.
Bodde NM1, Brooks JL, Baker GA, Boon PA, Hendriksen JG, Aldenkamp AP." in PubMed.

What? I'll have to be on E meds for 7 years before they will give me a correct DX?
I hate the fact that my PCP did not listen at all when I said that a neurologist that I saw for a year 20 years ago told me that I did not have epilepsy but need to control my anxiety and nervousness. PCP immediately put me on E meds without waiting for MRI results (MRI was probably fine since I have not heard anything back). I think my latest seizure was caused by me approaching my 2 year cancerversary (a lot of women recur at the 2 year mark). I don't like the fact that I am forced to take meds for something I don't have and I am not getting the correct treatment in the form of cognitive behavioral therapy since my neurologist appointment is 6 months away.
 
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It took several different docs and a severe injury during my first TC seizure before I finally got the correct diagnosis of Temporal Lobe Epilepsy. And then, years after being treated for E and more substantial research of the brain had been done, during the 90's, my epileptologist asked me during one of my office visits if there was any type of abuse during my childhood. I was stunned at this question. But more research has shown that not only does childhood abuse damage the child's body, it damages the brain as well. Even if it's only verbal abuse. And this was asked long after my diagnosis.

IMO, PNES is just an easy answer for a difficult question. They really don't know.
 
Bernard said:
There are actually a lot of threads on this subject here:
Click to expand...
Yes, I did note that it had been discussed before but many of those threads are a bit elderly. They expressed frustration with things like the medical usage of the term "Pseudo-Seizures" and such.

I was hoping to update the conversation and see if the diagnostic capabilities have improved and/or the medical profession's sensitivities.

I ran across a statistic in the Foundation for Seizure Disorders website that says that approximately 75% of people diagnosed with PNES are women.

Ladies, what do you think? Do women have PNES more often or are they just diagnosed with it more often (however correctly or incorrectly)?
 
Cint said:
It took several different docs and a severe injury during my first TC seizure before I finally got the correct diagnosis of Temporal Lobe Epilepsy. And then, years after being treated for E and more substantial research of the brain had been done, during the 90's, my epileptologist asked me during one of my office visits if there was any type of abuse during my childhood. I was stunned at this question. But more research has shown that not only does childhood abuse damage the child's body, it damages the brain as well. Even if it's only verbal abuse. And this was asked long after my diagnosis.

IMO, PNES is just an easy answer for a difficult question. They really don't know.
Click to expand...
Yes, exact diagnosis of regular E is not easy and PNES is not as well.

I don't doubt the theory that abuse early in life is recorded on the brain somehow and finds an outlet in seizures but you're right that calling it PNES as if we have really explained it is "an easy answer for a difficult question" as you put it. Why does one abused child grow up to have PNES and not another and how to account for the PNES cases with no history of abuse? Everybody has something in their past that could qualify as a "trauma".


Cint also brings up a good point that a lot of us were diagnosed a lot of years ago before this was even a conversation that could take place above a whisper. Anybody with what we now call PNES would have been considered "mentally ill" back then.

My point is how many neuros review older cases for the possibility that their predecessor now retired might have missed something and how many just go on refilling the Rxs as long as nobody complains?
 
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skipp8 said:
I have been reading up on PNES as well and stumbled on an article that says:
Despite the current available technical facilities, the mean latency between onset of PNES and final diagnosis as being non-epileptic and psychogenic is approximately 7 years.

What? I'll have to be on E meds for 7 years before they will give me a correct DX?
I hate the fact that my PCP did not listen at all when I said that a neurologist that I saw for a year 20 years ago told me that I did not have epilepsy but need to control my anxiety and nervousness. PCP immediately put me on E meds without waiting for MRI results (MRI was probably fine since I have not heard anything back). I think my latest seizure was caused by me approaching my 2 year cancerversary (a lot of women recur at the 2 year mark). I don't like the fact that I am forced to take meds for something I don't have and I am not getting the correct treatment in the form of cognitive behavioral therapy since my neurologist appointment is 6 months away.
Click to expand...

Thats sux. Crude expression I know but I can't think of a better one.

Yes, this is exactly the problem when patients don't have the info and/or doctors don't have the time to listen.

The same would be true of a patient told it was purely psychogenic, sent to counseling, and then finding out many years later that there was a physical problem.

I wonder which direction has more cases of mis-diagnosis.
 
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I just came back from a visit with my traditional Hawaiian healer.

(For those of you who haven't read about him in my other threads he is not a shaman in a hut somewhere shaking chicken bones to tell your future. He has a university degree and does as much net research as I do if not more.
He is an interesting intersection of ancient wisdom passed down through the generations and modern science. It is striking how much they are in agreement with one another. His healing practice is a combination of what we would think of as chiropractic adjustment and general body work/massage plus he is an herbalist. He works closely with many of the MDs here who value his work greatly.)

I told him what we had been discussing here about PNES and he was surprised that medical science considers something so self evident to be such a big mystery. The way he put it is that the body doesn't forget the injuries it has suffered (physical and emotional) over the years. Whenever it is something too big to handle in the moment, it gets stored away to be dealt with later.

He said his theory of why some people get PNES and some don't is that different people have different ways of letting the stored up pain out. Some people get seizures, some get chronic pain conditions like fibromyalgia (and are often told that is "all in their head"), some people get auto immune disorders like mystery rashes. But the pain always finds a way to get out.

He said that, as he does body work on many people, it brings back memories they hadn't thought about in decades, things that are often very painful to relive but very cathartic as well. The physical and emotional healing come together.

Interesting stuff.
 
I think P. N. E. S. continues to be poorly understood and poorly treated. As with other seizure disorders, contributing factors are not enough research, mis-educated or overworked neurologists, diagnostic difficulties, pressures from health insurers, etc. There's still little consensus about how to diagnose, as well as a mistaken reliance on EEG to rule it in or out.

One PubMed study of people with drug-resistant seizures http://www.ncbi.nlm.nih.gov/pubmed/21756548 suggests that video-EEG could be helpful in distinguishing P. N. E. S. from other kinds of seizures. But it still sounds like the diagnostic parameters are unclear.

In an ideal world, a neurologist would work closely with a psychologist/psychiatrist to evaluate and treat a seizure disorder that might potentially have a non-epileptogenic component. Rather than making definitive diagnoses in an area that resists them, it makes more sense to have an integrated collaborative treatment plan that allows the patient, neurologist, and psychologist to collectively identify and treat all kinds of triggers/stressors. But that ain't gonna happen. :(
 
"P. N. E. S. continues to be poorly understood and poorly treated." Indeed.

My concern is also for the people who are treated for other things when they actually have P.N.E.S. How many people have been on decades of epilepsy meds with their cases labeled as "idiopathic" and "drug resistant"?

I'm not saying I think I do have P.N.E.S. but it's possible. I was diagnosed back in the days when such things were not even considered. I had some seizures while under a ridiculous amount of stress and living on junk food and coffee (the end of senior year in college). Who's to say that the seizures would not have gone away on their own? They did mostly go away when I quit partying and got healthy plus graduating and getting a calmer lifestyle. Doctors don't think my case could be P.N.E.S. because the official story is that the meds did "work". Did they?

I've never had anything but a normal EEG but I've been on meds for most of the last 30 years. Now my body is very much addicted to the meds. I do have seizures if I stop taking them but are these an indicator that I have non-P.N.E.S. epilepsy or just that I'm a junky having withdrawals? I honestly don't know. I don't think of myself as having survived any major traumas that predate when my seizures started but everybody has been through something.

That was an interesting study Nak posted. All of the parameters used as "indicators" that someone's seizures were P.N.E.S. occurred in their study but at frequencies ranging from around 60% to 15% of the time. So no, there was no clear definitive anything.

That kind of collaborative treatment Nak is suggesting is harder and harder to come by in HMO systems where it takes forever to get an appointment with any one specialist. The old saying is that if you only have a hammer, everything to you looks like a nail. Perhaps this is true of such specialized doctors as well. A neurologist sees an organic brain issue and hands out meds while a psychiatrist sees a psychological issue and prescribes therapy.

Either one of them could be wrong.

It would be nice if they did a little inter departmental communication.
 
I wouldn't say psychiatrists issue therapy. They issue a fair amount of drugs with equally as bad side effects as anticonvulsants (if not worse). Psychiatrists aren't therapists, they are doctors. If you think the process of being diagnosed with E is bad, the process for being diagnosed with a mood disorder or other psychiatric issue is worse. At least with E you have EEGs to objectively measure what is going on. With a psychiatric disorder you don't have that, so what is there to go on? Psychiatric disorders are diagnosed by elimination of organic causes first and foremost; they are a catch all diagnosis for issues which can't be explained otherwise. Pretty scary stuff, really.

Edit: My psychiatrist told me when I first started seeing him that "we treat symptoms". I was technically never diagnosed (with bipolar, or psychosis, or whatever). And why does it matter? The medication I was put on (Saphris) has done its job splendidly. So that said, why does it matter if the seizures are non epileptic? If you are put on an anticonvulsant medication and it does its job in eliminating the seizures that is what matters. If EEGs show normal brain function and the seizures are non epileptic then it makes sense to try psychiatric means of control. IOW, the diagnosis is irrelevant so long as the symptoms are corrected.
 
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I agree that psychiatrists do toss around the meds, sometimes more freely than neuros.

"A catchall diagnosis for issues that can't be explained" is a really good way to put it but that applies to "idiopathic" seizures too. Sticking a label on something does not mean we understand what the heck it is.

It's nice if the symptoms get treated. But wouldn't it be better to know the root cause?

Some conditions really need the meds but there are others that don't. Being medicated with all the medication side effects for a condition you don't even have like skipp8 above is worse than useless.
 
Nakamova said:
In an ideal world, a neurologist would work closely with a psychologist/psychiatrist to evaluate and treat a seizure disorder that might potentially have a non-epileptogenic component. Rather than making definitive diagnoses in an area that resists them, it makes more sense to have an integrated collaborative treatment plan that allows the patient, neurologist, and psychologist to collectively identify and treat all kinds of triggers/stressors. But that ain't gonna happen. :(
Click to expand...

In an ideal world, a neurologist would work closely with a neuropsychologist and a neuropsychiatrist to try to figure out what is going on inside the mind and body.
When I lived in Memphis, we had an Epi-Care Center at UT. My epileptologst, Dr. Montouris, worked closely with the neuropsychiatrist, Dr. Blumer, a world renowned neuropsychiatrist who specialized in the behavioral effects of epilepsy.
We evaluated everything we could imagine to figure out what could have caused my refractory E. Not even brain surgery stopped them! Like I said in my previous post, my shrink and my neurologist asked if I had undergone any type of abuse, verbal or other. Just serious verbal ridicule day after day can change someone's brain. Now some neurologist say this causes P.N.E.S.

In addition to Nak's PubMed link, here is one by Dr. Blumer on the subject:
http://www.ncbi.nlm.nih.gov/pubmed?cmd=Retrieve&dopt=AbstractPlus&list_uids=16908219

And Aloha, if your seizures occur at night, read this:
http://www.ncbi.nlm.nih.gov/pubmed/17379548
 
Unfortunately not an ideal world for everyone. But I hope keeping conversations like this out there and getting people as informed as possible will help.

Interesting links, Cint. Thanks.

The first one is about people having both P.N.E.S. and E.S. That is an interesting combination. Yet another possibility to be considered.

The second link is all about the sleep disorders or para-somnias which can be mistaken for nocturnal epilepsy. I've been doing some poking into this. Thanks for that link.


The take home is that none of these conditions are as clear cut as we would like them to be.
 
Though it's certainly the case in far too many instances, not all psychiatrists are pill-pushers. If someone is referred with a suspected P.N.E.S. diagnosis, the recommended treatments include non-drug therapies such as Cognitive Behavioral Therapy and EMDR (Eye Movement Desensitization and Reprocessing) rather than medications. But there's a muddled grey area where folks will get [mis]diagnosed with bipolar or anxiety disorder and prescribed brain meds. Or maybe they have some of the above as co-existing disorders, as is often the case. It's not easy or simple for even the most committed neurologist or psych doc make these kinds of diagnoses -- something that is made worse in a healthcare system that insists that diagnosis be made very quickly (by a single specialist) and treated very concretely (meds).
 
Yes, there is not only the issue of mis-diagnosis but also the issue of co-existing conditions, either P.N.E.S. alongside E.S. and /or any epileptic condition alongside a psychological/ psychiatric one.

Muddy waters indeed.

And a neuro gets 15 minutes with you to try to sort it all out.
 
I will say with my neuro he does spend as much time with me as he needs to, so it is never just 15 minutes
and there is always always to much go over 15 minutes wouldn't work with him.
 
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