In March of 2011, I blogged about an important topic: what is the proper name for “psychogenic seizures.” Recently, there has been a renewed interest in how we call this condition. In particular, the question that has arisen is whether the word “seizures” should be in the label. In addition, there are a number of patients who reject the term “psychogenic.”
The current scientific term for this condition in the USA is psychogenic non-epileptic seizures (PNES).
Let’s start talking about Psychogenic which simply means that the symptoms are from of mental or psychological origin. Some patients take offense to the term “psychogenic seizures” because they reject the psychological origin of these events and would rather call these “functional symptoms.” Functional is preferred because it underscores that there is no known organic cause but that there is a dysfunction that may be determined to have such a cause in the future. My sense is that this functional/psychogenic argument stems from dichotomous thinking that sees mind and body as split when in fact PNES is a biopsychosocial disorder.
Psychogenic does not mean that it doesn’t matter or exist or cause considerable distress. It simply means that certain psychological factors are in play in the development and sustaining of the symptoms. Moreover, the fact that psychological treatments of PNES show improvements in seizure frequency and a variety of emotional measures underscores that there is a psychological component in the condition that we can target and treat (La France et. al, 2009 and 2014; Kuyk, et al, 2008, Mayor et. al, 2010; Zaroff et al, 2004; Santos et al, 2014 to name but a few).
References: http://www.ncbi.nlm.nih.gov/pubmed/19233313, http://www.ncbi.nlm.nih.gov/pubmed/?term=LaFRance+2014+CBT, http://www.ncbi.nlm.nih.gov/pubmed/18395473, http://www.ncbi.nlm.nih.gov/pubmed/15256198,
As for “seizures,” although I am on record for having said in my blogs, book, and during interviews that it might be preferable to replace the term “seizures” for “episodes,” or “events,” I hear that many patients are opposed to this. And they rightfully argue that their episodes look and feel like a seizure, and are perceived by others as seizures too. So, I will go on the record again and say: let’s go ahead and call them “seizures” as long as we are clear that these are not epileptic seizures and will not benefit from treating them with anti-epileptic medications or by going through countless unnecessary neurological tests and medical ER visits (if there is no new medical issue).
The picture on this blog post shows the stunning PNES awareness ribbon that was created last year that stands for trauma/PTSD (teal) and seizures (purple). Approximately 75-90% of patients with PNES have a history of trauma.
i appreciate calling them seizures because I believe that term conveys an episode that is not controllable by the sufferer, which has been important in helping teachers and school support staff understand that they are not a choice or simply a behavior. When teachers understand the difference, they react to it in with more care and concern.
I’m in favor of calling them seizures because that is what they are. They are involuntary events that take the form of seizures and to call them anything else diminishes them to something less traumatic. To call them events or something less descriptive may downplay the severity of them.
Also, the outdated term, pseudoseizures are finally being eliminated and I my feeling is that another name change will just confuse more people. Psychogenic, which implies a psychological origin, is accurate and should not be seen as offensive. Those with psychological challenges should not be looked down on and that these seizures are not epileptic in nature in no way suggests that they are not a terrible condition to have to live with.
They are seizures and they are of psychological origins.
Thanks for your great work Dr. Myers!
Having only worked to raise public awareness of seizures in veterans for the last two years, I admit I am new to the topic. That said, do not expect my reply to present any earth-shattering revelation about seizures: epileptic or non-epileptic. Nevertheless, I feel it worthwhile to say…
• As a disabled veteran living with PTSD, I have a vested interest in understanding all I can about psychogenic non-epileptic seizures (or events, episodes, functional symptoms).
• I believe the term psychogenetic non-epileptic seizures (PNES) is the proper term to use because it best describes what is happening when emotional duress involuntarily presents as convulsions and tremors.
• An individual’s (or group of individuals) rejection of the psychological origin of PNES, even if that person lives with PNES, is inconsequential to the issue.
• The choicest label on any condition should be the one that most accurately describes the condition constructed from the evidence-based research available, otherwise it is merely opinion.
• We waste far too many resources majoring in minors. Would we even have this conversation if a cancer patient took “offense” with the term “cancer,” or “malignant”? No. We have these conversations around topics, like epilepsy and PNES, where the shadow of ignorance looms heavy over true understanding. Dr. Martin Luther King, Jr., said, “Nothing in all the world is more dangerous than sincere ignorance and conscientious stupidity.”
• If a newborn baby is hungry, we don’t waste time trying to figure out what to call the child…we feed her or him.
• I work with and advocate for people…veterans…living with comorbid post-traumatic stress, traumatic brain injury, post-traumatic epilepsy, and PNES who are starving for solutions, answers, and actions. Not more talk. The real question for them is not what we call their condition(s), but are we moving closer to curing it.
Dr. Myers, I am so glad your blog was shared with me by my Executive Director. I was unaware of your work until today. Thank you for being a clarion voice for people living with PNES and epilepsy.
I’m in agreement with John. I am of the belief that the mind and the brain are one in the same. Yes what we think does influence the rest of our being. However, I have talked to and listened to many who have had no trauma in their background who have PNES or the umbrella term functional Neurological disorder. To me, functional just means there is a problem with the brain body connection that is not “functioning” properly. I think it’s an argument of semantics. I do agree with you Dr. Meyers that we should stick with seizures just because the name change could be even more confusing.