This feature article was just published by the International League Against Epilepsy (ILAE) and summarizes meetings that took place last year.
https://www.newswise.com/articles/what-should-we-call-psychogenic-non-epileptic-seizures
Note: I will continue to call PNES by this name below since we do not have a better term yet.
Why is this important what we call this disorder, you might ask?
In summary, the name we end up using has important implications (for patients (since it is your health condition), for how others perceive those patients (family, friends, bosses, teachers, doctors, etc.), and even things we don’t think about that much: keeping neurologists involved in the diagnosis process, making sure reimbursement for testing is guaranteed, and research funding.
It is also important to have a unified term to avoid confusing patients and others. Right now, someone may not know that when they say they have PNES, this is the same as saying that they have “dissociative seizures” for example. Psychotherapists may also be unaware of these many terms and turn patients away. And if we ever try to set up a foundation or put together a public education initiative, we need to be very clear on what name we use, or our efforts will be watered down.
When you read this article, you will see that “psychogenic” is debated, “non-epileptic” is debated, and even “seizures” are debated.
As for the use of the word “seizure,” I have never found it problematic. The episodes look like seizures, feel like seizures, and patients are quite capable of understanding that they are not epileptic if this is clearly explained. So, I disagree with this idea of having to do away with “seizures” in the name. It would be great to hear your thoughts on this debate.
As for “psychogenic,” ten years ago, I published one of my first blog posts (Psychogenic, pseudo, psychological: why does PNES have so many names? | Non Epileptic Seizures) in which I mentioned that some patients disliked the term because “psycho” reminded them of the Hitchcock movie and other negative connotations. Way back then, I had proposed changing “psychogenic” for “psychological” but now I realize that may not be the best option. Ten years have taught us a lot, and possibly the best term might be one that describes the underlying mechanism (as “psychogenic” sought to do “generated by psychological factors”) that extends beyond psychological factors and includes physical triggers as well (pain, exhaustion, hunger, thirst, etc.) which are also known to trigger PNES. In other words, perhaps we need to include in the name something to do with this being an interoceptive disorder.
We need to have a name that is clearly representative, acceptable to all parties, and that can be prominently displayed to start making inroads everywhere that change is needed. Right now, the multiplicity of names being bandied about weaken the community, confuse patients and clinicians, and make it ever so hard to educate the public. We need to be very clear before we take any more steps in the direction of changing a name because we run the risk of losing the progress we have achieved so far in educating the public and health providers using the term PNES (in replacement of the term “pseudoseizure”).
Perhaps we should hold a meeting that includes not just professionals like those who were at the webinar in this article but also patients who wish to voice their position/experience? Perhaps a brief explanation of the debate and an online survey? Any other ideas?
A medical diagnosis needs to give an affirmative picture- a snapshot- of what the provider is looking at and what the patient is experiencing. A diagnosis of what is NOT- such as “Non-Epileptic” just explains what it is not, but not what it IS.
I also agree that physiologically based seizures need to be included in the name. I personally favor the term “Dissociative Seizures” because for me, that is an affirmative description, although most people have no idea what I’m talking about when I use that term. I do find that there is too much “bumbling” around finding the term that the provider will understand and not trigger bias and medical abuse. I find that since most providers have no idea what “dissociation” is, they are less likely to become abusive with the term “dissociative seizures”. Although I find this to be extremely tragic- that the only way to be treated with dignity and respect for my human rights is by confusing the doctor or provider.
I agree that the word “seizures” needs to be maintained in the diagnosis. The body and brain is seizing and convulsing during that time. I personally find the term neurologists like to use- “events”- to be extremely perjorative and disturbing. First, an “event” doesn’t mean anything, and it doesn’t give a descriptive label of what the patient is experiencing. So the feeling I get is that “I just experienced nothing”. It feels extraordinarily demeaning and invalidating to me. If neurologists are insistent on removing the term “seizures” then they need to replace it with “convulsions” because that is exactly what is happening, except in the case of absent seizures.
I am glad that patients’ experiences and opinions are being considered/invited. I would love to participate.
I’m consistently confused by the concern about using the term “seizure” and the worry that it will “confuse” doctors and lead to poor care. Let’s consider what the real problem here is- poor education of physicians related to seizures in general, and PNES in particular. Why are we accepting that ER physicians and other providers can remain ignorant of this diagnosis, and worry that they will get “confused”. There are multitudes of cardiac diagnoses, cancer diagnoses, orthopedic diagnoses, etc., with similar sounding names. It is the job of the physician to be knowledgeable and educated and provide appropriate care. Somehow physicians manage to learn to differentiate between the different diagnostic labels in these categories without consistently harming patients. I don’t understand why the medical community thinks that we need to continue to coddle doctors and accept their ignorance- instead of insisting on comprehensive medical education on the full spectrum of seizure disorders and treatment protocols?
More details on the debate would be helpful along with an online survey. It’s hard to start the conversation to change a name that isn’t universal to begin with, at least yet. Every doctor called my daughter’s condition something different which was very confusing (pseudoseizure, PNES, conversion, functional). And to add to the confusion, there are 2 different types of NES (physiologic and psychologic). Unfortunately, everyone assumed that all NES were psychological, resulting in a delayed and misdiagnosis of intracranial pressure caused by a medication (growth hormone). In addition to a more accurate, universal name, the medical community needs more training in general on this difficult diagnosis.
I agree whole heartedly with what has been pointed out thus far. I can’t stand the term ‘pseudo seizure’ because the very term is invalidating of the experience of a seizure. I don’t mind ‘convulsions’ in place of ‘seizures’ but the diagnosis must mention either term. The fact of the matter is that WE DO experience “real” seizures or convulsions. In point of truth, I don’t understand the need of doctors or other members of the health community to distinguish between epilepsy and other seizure disorders. Why the comparison? It’s not like we compare lung cancer to prostate cancer. It’s cancer. The fact that the medical community compares epilepsy with PNES is in of itself invalidating. Personally, I like the diagnosis of “dissociative convulsive disorder” much more than PNES, and this is the diagnosis I tell people I have. Usually, I am required to define it for people, but I don’t mind educating people. This includes doctors, nurses, neurologists, EMT’s, and others from the medical community.