Late last year, we posted a survey on the homepage of www.nonepilepticseizures.com that addresses the age-old question: what should we call these particular non-epileptic episodes? The difference in this blog post is that we will hear from non-professional survey voters and not just the researchers.
If you have followed this blog, you might recall that in the past, I have written about what professionals think psychogenic non-epileptic seizures should be called and have even tried to explain my rationale behind the benefits and drawbacks of each term. Again, if you have followed these posts, you might have noticed that over time, you might say my views evolved.
Seizure: For some time, I went back and forth between agreeing with certain clinicians who thought the term “seizure” should be abandoned because it might be inaccurate or confusing. I could see their point to some degree. Although in the last several years, I changed my position and in fact, think that as long as my patient and I are very clear that these seizures are not epileptic, we can certainly call these episodes à “seizures.” Why? Because it is what they look like and experientially, it is what they feel like: the patient is in fact, “seized” by the episode. In my view, most patients are quite capable of understanding the distinction between “epileptic” and “non-epileptic” and can therefore call their episodes “seizures” if they so wish.
In the past, I also proposed replacing “psychogenic” with “psychological” and explained my reasoning behind that. Although over time, I have drifted back to preferring “psychogenic.”
But I am not the only one who is meandering from one term to another. Recently, newer terms have appeared including “dissociative seizures,” “functional seizures,” and some others seem to have fallen out of favor (e.g. non-epileptic attack disorder -NEAD).
Now let’s see how what this (non-scientific) survey shows us.
What do you prefer to call your health condition? These are the most recent survey results 41 votes
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Analysis: It looks like psychogenic non-epileptic seizures (PNES) is the preferred term by far with 46% choosing it over the others. Possibly, this term has now historically been around for such a long time and is actually quite accurate and descriptive so it has won the preference not only of professionals but of the survey respondents in general.
The relatively newer term of “dissociative seizures” comes in second. Although my one concern with this term is that it would suggest that ALL of these seizures are somehow related to a dissociative mechanism while, in fact, there are some episodes that are not. In addition, just this year, we published a paper in which we reported that we were unable to differentiate adults with PNES from adults with epilepsy on measures of dissociation. https://www.researchgate.net/publication/330401646_Psychological_trauma_somatization_dissociation_and_psychiatric_comorbidities_in_patients_with_psychogenic_nonepileptic_seizures_compared_with_those_in_patients_with_intractable_partial_epilepsy
The other newer term of “functional seizures” follows at a close third. Perhaps with time, this term may increase in popularity since it is highly descriptive and yet, avoids highlighting the psychological characteristics in PNES (please note, in my opinion, the psychological characteristics of the disorder are key and in fact all the current treatments for PNES involve some form of psychotherapy, so trying to bury the psych component is not ideal. But I do hear from patients that they are often dismissed by ignorant professionals and others because “psych” is considered to be less serious, important, etc. so I can see why this term might be preferred).
And lagging in the end points are “NEAD” and non-epileptic events.”
Well, there we have it. For now, PNES is the term that I will continue using and that most of you will probably choose as well. Please feel free to share your opinions, comments, experiences, etc.