My mission is to help those with PNES

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Teft

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Hello everyone,

My name is John Dougherty and I am the spouse of someone who has successfully overcome most of her psychogenic nonepileptic seizures (PNES) causes by sexual abuse in childhood. PNES are often linked to trauma and PTSD and there are up to 500,000 people in the US alone who are suffering from them.

Currently I’m working with several key experts in the field of epilepsy to help those with PNES find the help they need. I have also written a book about our experiences. It is called Lowering the Shield – Overcoming Psychogenic Nonepileptic Seizures, and the main theme is how patients and treatment providers can work together to find the best outcomes. It is available on Amazon.com.

I am interested to know if anyone here is struggling with PNES and if they have had difficulty in finding treatments that work. I am trying to spread the word about this condition through my book, website and blog. Feel free to visit my Squidoo lens called "Lowering the Shield" for more information.

Thank you,

John
 
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Thank you John.


I just joined this forum in hope for finding out more information about epilepsy.

Upon reading more about PNES, I think my boyfriend is going through this. It wasn't a serious issue at first and when he went to see doctors, they basically told him it was just stress.

Well, I don't it was purely stress. He had a child trauma and everytime something triggers that part of him, he becomes really stressed to the point that it hurts him physically.

Then he goes into this episode... minor tremors, unable to move or response, staring spells for about 5-10 minutes he couldn't talk or move. As times goes on he might be able to mumble or utter or word or two. He can hear what is being said to him and he can try to respond...

The after it's over he'll snap out of it...feeling weak but at least he can talk now. No memory loss or complete unconsciousness.

Does this sound like PNES?
 
Hi BL, when he went to see the doctor did they run any tests? Did they do an EEG?
 
They had him do the 24-hour EEG about last year. He missed the follow up. I will ask him for more information. He said they did do some tests, but I'm not sure exactly what kind of tests. Nothing like a CT or MRI though.

He's very sensitive right now, so I hate to nag him constantly about this as he doesn't like the idea of returning to the ER or make an appointment only to get disappointed again. He lives in London, UK. I am not there currently, which makes it really hard.

But it definitely has to do with some psychological issue because it is only when he is stressed out...it could be people doing or saying something that reminds me of the experiences that he's gone through.
 
It is so difficult to differentiate between PNES and epilepsy initially; I read it takes an average of 7-8 years, after taking anticonvulsant medications, to recommend the differential diagnosis of PNES. Is that correct? I will check out the book on Amazon.com. It sounds like a wonderful read! :)
 
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I honestly don't know anything about it so I'm going to refrain from comment. I've been one of the rare and lucky ones that have had all positive EEGs. And nonepileptic seizures is a new concept to me that I don't understand yet, although I sympathize with. I tend to first hope the doctors miss something or perhaps they need to do another EEG.
 
Chelsea said:
It is so difficult to differentiate between PNES and epilepsy initially; I read it takes an average of 7-8 years, after taking anticonvulsant medications, to recommend the differential diagnosis of PNES. Is that correct?
Click to expand...

Not necessarily. It only took a few months and me going thru a bad accident before the docs finally made the correct diagnosis of epilepsy for me. When I initially started feeling "weird", the dr. said I was hypoglycemic and didn't do any testing. When I was burned and in the hospital for 2 months, they did all the testing needed and it was then I was diagnosed with epilepsy. Maybe if I'd been diagnosed correctly two months earlier, I would not have been thru hell.
 
Beautiful-Love said:
Does this sound like PNES?
Click to expand...

Childhood trauma is a very common cause of PNES. Those who can explore any trauma they have experienced in childhood can often make great strides in reducing their seizures. This was the key to my wife’s success in eliminating her most severe seizures.
 
Chelsea said:
It is so difficult to differentiate between PNES and epilepsy initially; I read it takes an average of 7-8 years, after taking anticonvulsant medications, to recommend the differential diagnosis of PNES. Is that correct?
Click to expand...

If the doctor is skilled in interpreting EEG’s along with gathering the detailed patient history it can be done reliably. The key is finding an experienced individual. Your right about the length of time before the correct diagnosis is made. It’s actually as long as 20 years in some cases.
 
Cint said:
Not necessarily. It only took a few months and me going thru a bad accident before the docs finally made the correct diagnosis of epilepsy for me. When I initially started feeling "weird", the dr. said I was hypoglycemic and didn't do any testing. When I was burned and in the hospital for 2 months, they did all the testing needed and it was then I was diagnosed with epilepsy. Maybe if I'd been diagnosed correctly two months earlier, I would not have been thru hell.
Click to expand...
There was an article on PubMed about it emedscape.com; of course, how reputable the academic paper was I do not know. I feel for you; although, I had no where near the challenges you had.

There is so much information swarming about PNES; my neuro told me that a percentage of people with epilepsy also have PNES. On my insurance claim was ICD-9-CM 345.10 and 780.39 (generalized convulsive ep + PNES); I guess I fall into this category as well.
 
BrandiBrat said:
Are they real seizures or someone faking a seizure? I'm confused
Click to expand...
No; it is not someone faking a seizure. I think people with PNES can't help having a seizure as much as someone with epilepsy. However, I know very little about PNES...this forum has encouraged me to gather more information. It would be like saying someone is faking PTSD or trauma. With appropriate psychiatric and psychotherapy, I hear clients are able to dramatically reduce the number of seizures or eliminate them entirely. It is such an arduous thing to process trauma; distract; then process more. It's very courageous of someone diagnosed with PNES to endure psychotherapy or anyone for that matter--it's like setting a broken bone, and then continuing the marathon of life after the leg has healed.
 
Thank you for that explanation, it was very helpful. I'll learn more about it so I can understand the term better.
 
My seizures were never diagnosed as PNES and they always showed up during my EEG's. However, I never suffered a head injury, encephalitis, meningitis, a brain tumor but I still have E. My epileptologist even asked me once if there ever was abuse/trauma when I was growing up. Abuse of any kind can also bring on E.

Brandi, here is an explanation of PNES:

http://professionals.epilepsy.com/page/ar_1273762604.html

Psychogenic Non-epileptic Seizures (PNES) Across the Age Span

By Gaston Baslet, M.D., Assistant Professor, University of Illinois at Chicago Department of Psychiatry


Psychogenic non-epileptic seizures (PNES) are sudden, involuntary changes in behavior, sensation, motor activity, cognitive processing (including consciousness), and/or autonomic function linked to a dysfunction in the processing of psychological or social distress which, unlike epileptic seizures, are not related to electrographic ictal discharges and cannot be explained by other neurological or medical conditions. PNES are also called non-epileptic events, non-epileptic attacks, pseudoseizures, psychogenic seizures, dissociative seizures;
Click to expand...
 
Teft said:
If the doctor is skilled in interpreting EEG’s along with gathering the detailed patient history it can be done reliably. The key is finding an experienced individual.
Click to expand...

:agree: The KEY is finding an experienced, reputable doctor!
 
I get it, now! This entire time I thought it meant people were faking it during these types of seizures....very interesting how the mind/body interacts. I understand now. :)
 
welcome teft,
i struggle with this idea alot as the line between ptsd and epilepsy is so, so thin. a ptsd attack and a simple or complex partial seizure are similar in so many ways, what you don't want is someone to misdiagnose, as cint said, the key is a good doctor.
i was misdiagnosed by a child psychiatrist with ptsd when i was 15. no epilepsy in my family, i knew nothing about seizures, then had (what i called 'episodes' for years) one night in my bedroom. it was a vision of something that happened when i was 6, that i didn't get counselling for and totally forgot, and 9 years later it hit me like a hammer. the episodes never stopped (19 years and going...), yet it was only the first few that were of my trauma. then they changed into something else completely, but still enveloped me in a world of fear. HATE THEM.
then at 25 i started having grand mals, and eventually by 28 it was decided i never had ptsd to begin with. but the episodes and my simple partials are almost identical. was a very tough new diagnosis. the old psychiatrist refused to comment when called by my doctor.
of late i have been through an epilepsy clinic and am headed for surgery, as a lesion was found, which they say was there since i was in the womb. my epileptologist said that being the first seizure i had at 15, it would have been a very strong one, reaching to great depths in my brain, with enough force to pull out the worst, most hidden memory (left temporal lobe), and that it's not ptsd. i fully believe the specialists know what they're doing but i do ponder on how this has played out for 19 years. still have partials that lead to grand mals but they're not about that memory.
 
Teft said:
Childhood trauma is a very common cause of PNES. Those who can explore any trauma they have experienced in childhood can often make great strides in reducing their seizures. This was the key to my wife’s success in eliminating her most severe seizures.
Click to expand...

Teft, thank you for the reply.

I think he is willing to get help right now. I miswrote it...he didn't have an EEG...he had an ECG because he developed some chest/heart pain because of the stress. Prior to that he had collapsed only once...and we just thought it was stress. Then he had another in Jan, and we thought it was a form of anxiety attack.

Do you know if people with PNES have some sort of chest pain prior to this?

I try to talk to him a lot about what's going on. He tells me stuff that happened...what it was like growing up with father. I think he just doesn't know how to proper deal with all the stress leading up to this. One day he only heard his brother talking to someone about certain things and the comment hit him eventhough it wasn't even directed at him at all.
 
PNES and psychological disorders

Thanks to all for your great posts and welcome. I am dedicated to helping all who suffer from seizures, not matter the cause or type. Just for clarification, PNES are a symptom of psychological disorders such as dissociative disorder and conversion disorder. The seizures are brought on by re-experiencing terrible trauma suffered in the past and act as a defense mechanism by “dissociating” from it. Or they can be a way to “convert” the trauma pain into a physical manifestation. And they are real seizures. As stated by the Epilepsy Foundation PNES are not under voluntary control of the person having them.

Thanks to Chelsea for capturing the essence of PNES and facing the difficulty of psychotherapy. It’s not an easy thing to do.

And Benard points out a great article reference about Partial Complex seizures, which can be mistaken for PNES but also vice versa. My wife was misdiagnosed with PC type originally. With video-EEG now the standard for PNES diagnosis we can be pretty well assured a correct diagnosis. The use of video simultaneously with traditional EEG is considered the gold standard in PNES diagnosis.
 
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