Does it matter what we call PNES?
In Shakespeare’s Romeo and Juliette, she said: What’s in a name? that which we call a rose by any other name would smell as sweet…
Similarly, as kids we were taught: Sticks and stones may break my bones, but names will never hurt me.
What do these two statements mean?
That what you are is what matters, not what you are called, that words are not powerful. But actually, words are very powerful and precision in the diagnostic names we use is the bedrock of the therapy we will construct to treat the patient.
Pseudo (as in pseudo seizures) means “fake,” “not sincere or authentic,” “sham,” “untrue,” “a lie.” A logical subtext to the term “pseudo” is that there is a conscious effort on the patient’s part to deceive. PNES is anything but that. To think of PNES in these terms confuses this condition with the concept of malingering which is to consciously fake or make up an illness (to avoid something tangible such as work, prison, to obtain drugs, etc). Therefore, the term pseudo seizures is first and foremost inaccurate and muddles the understanding of the condition. But also it can affect the empathy a health professional feels, it is offensive to the patient, it is confusing to all who are involved, and it does not help us move in the right direction for treatment.
Even more obscure, is the term hysterical seizures. Hysteria stems back thousands of years and was used to name unusual symptoms in women that were thought to be due to their “wandering uterus” (hystera). Basically, this name is incorrect in that the uterus has nothing to do with this condition and moreover, men can also have PNES. In addition, because the meaning of the word has changed over time, the word “hysterical” has become very offensive.
Next: Psychogenic means of mental or psychological origin. The term “psychogenic seizures” is precise in that it is underlining the psychological origin of these events. However, I have had a number of patients complain about this name because “psycho” is associated to something negative, as in the Hitchcock movie “Psycho.” Patients have reported that family or friends have a negative reaction to this name and that they are uncomfortable with it. And “seizures” can be confusing.
In Britain, PNES is called NEAD-non epileptic attack disorder. The criticism leveled at this name is that it does not underscore the psychological origin of the condition and does not differentiate this condition from physiological/organic non epileptic seizures. The main problem is that term remains imprecise.
My opinion is that the most accurate and least offensive term is probably psychological non epileptic event. This name underscore that the condition is psychological and that it is not epileptic. And pointedly, it replaces the word “seizure” with “event” which is actually the most accurate way of describing the behavioral changes that occur during PNES.
Conclusion: we should probably be talking about PNEE, not PNES. What do others think about this?
I believe the term using psychogenic and pseudo seizures are a terrible label and name association of nonepileptic seizure disorders.
A friend referred me to this website title NEAD – Non Epileptic Attack Disorder. There is good information on this disorder and name association that streamlines the insufficient terms of psychological seizures.
I believe NEAD is a good term to explain nonepileptic seizure disorders. I was recently diagnosed with PNES in the US.
For 16 years I was treated for epilepsy with my generalized tonic/clonic seizure disorder. This was a medical misdiagnosis. After an examination with Video EEG in an epilepsy monitoring unit I did receive proper diagnosis.
The difference between seizure disorder and epilepsy from the years of research I have did for my own health’s sake, are scientific and medical findings of brain injury or abnormality in epilepsy.
With nonepileptic seizures there is no abnormal brain waves. It does not mean that the seizures are not real, the patient isn’t suffering, and the patient sure isn’t faking the seizures but the origin of cause is separate in the body than a brain disorder.
I would advise anyone who has seizures to make the investment to have Video EEG monitoring done in an epilepsy monitoring unit to reach a proper diagnosis. Epilepsy medication will not help nonepileptic seizure disorders.
I do not work out of the home now and am seeking extensive therapy with neurofeedback, biofeedback and ERMD treatment with a behavioral therapist. These treatments will assist in my recovery due to Post Traumatic Stress Disorder in my life from being sexually, mentally, physically and emotionally abused through my childhood. This can seem overwhelming as a diagnosis because it is so medically controversial. We are our best advocates for medical care and safety. Best wishes for anyone who has a seizure disorder.
http://www.neadtrust.co.uk/
The name IS a problem. My young preteen daughter has PNES and the name and stigma have caused an INCREASE in anxiety for her.
I will begins with the term seizure- for all witnesses and for the patient THIS IS A SEIZURE. She isn’t having an attack, or episode and certainly not a mild event. She falls to the floor, foams at the mouth, she usually bleeds from her nose or tongue from the fall and convulses until the SEIZURE is over. When we label these incidents as anything other than seizure, we limit the ability of the bystander to provide first aid. When we looked at medical alert bracelets, she wouldn’t pick the one with seizures on it because a Dr. told her they weren’t seizures. “Mom, just get one that says CRAZY POSESSED GIRL, they will at least understand that better than PNES. My heart breaks for her. Non-epileptic Seizures is what we call them now. ANYTHING with the term psycho- or without the term seizure is unacceptable.
I agree with both of the comments. These names have caused a big problem for my son at school. His teachers and the school nurse has been affected by the name. They treated him differently, as if he could control them. They would tell him he was alright. He didn’t feel alright; to him it feels like a seizure. I only call them non-epileptic seizures. I don’t even buy the whole psychological spin on them. The brain controls everything. I think it is a condition that there has not been enough medical research on. We are still in the “dark ages” on it. Just my thoughts.
I’ve been diagnosed with, conversion disorder, or PNES, as well. The hell i went through just to finally get my true diagnoses is one that I wouldnt wish on my worst enemy! I was diagnosed with “epilespy” when i turned 13, and back then, in the 80’s, they didnt know much like they do now, back then you took anti-epileptic meds tht never helped and where known as the crazy possed girl. About 5 years ago, i was correctly diagnosed and treated for my PNES or conversion disoder, and with EMDR have had awesomne results, no more meds, but now my daughter has it, and there isnt any real finding on if its heritary or not, I think the name PNES is fine, it is what it is.
Melissa, I am glad to hear that once you were given the right diagnosis, you could receive the correct treatment and are now doing better.
It can take years to reach the correct diagnosis although hopefully we can cut down the time it takes with more education to the public and treating professionals.
Best to you and your daughter.
Over the years my diagnosis name has changed, initially I was diagnosed as having pseudoseizures and it most certainly did not help particularly when I had one when out as although the general public were alright (probably because they thought it was epilepsy) the ambulance crews and A&E treated me like I did it on purpose. Then my diagnosis was changed to non-epileptic seizures the only problem with that was that it just told people what it wasn’t and so ment that I had needless tests in hospital whenever I had a seizure while out. Then the word psychogenic got put in front of it which was useful in one way as it now explained it better however anytime I went up to A&E they either didn’t know what it was and panicked so treated me for epilepsy just in case or they did and went ‘oh it’s one of those pseudoseizure patients’! Now I’m diagnosed with dissociative seizures which explains the condition even better however I still have great problems in the medical people either don’t know what it is and treat me for what they see which is someone having a seizure that really does look epileptic or once again they go ‘oh that’s the new name for pseudoseizures and once again treat me like I’m doing it on purpose’! As far as I see it the name is one thing but changing peoples attitudes is another.
My daughter has this also ones. And the schools here in how area does not understand stand so they donot want her in the school,Donot know what to do. My daughter passes out from school bus lights, camera flashes, strobe lights. Help me!!!!!
I am in the same boat. I am so clueless on this one.
I agree. I just lost my father this week and was explaining PNES to someone, bragging about being seizure free for 6 months!, and he jokingly called me pcho.
i think that Dr Jon Stone of http://www.neurosymptoms.org has given it the best name of all: functional neurological symptoms. his website and reseach are leading the world in understanding this condition and why it happens to people. i find any of the names which imply it is psychological in any way offensive. it seems to me to be a nervous system/brain malfunction that as yet cannot be seen on any scanners or they are not looking in the right place on scans to see the evidence. of course there is a psychological aspect to EVERY illness, the brain is running the whole body via the nervous system so misfiring in that system is going to cause ‘software’ glitches and problems. just because its a software problem doesnt mean its a psychological in the sense that people think of that – eg in the mind so therefore can be controlled. this is more of a background programming problem!