It is important for mental health professionals to be cognizant of this because these patients exist and are encountered in psychotherapists’ offices with certain regularity.
For decades if not centuries (if we look back to Pierre Janet and Sigmund Freud) it has been understood that psychological trauma is an important risk factor in the development of PNES and other conversion disorders. However, we can really expect that out of every 4 patients we meet who are diagnosed with PNES, only 3 will likely have psychological trauma present in their histories.
How do we know this? No matter what study you look at, you will find that psychological trauma is never (except for one older study that had 10 subjects) found in all patients diagnosed with PNES. A superb review by Fiszman et al (2004) of traumatic events and PTSD in PNES, found that depending on the study anywhere from 44-100% of patients reported trauma in their histories (https://www.sciencedirect.com/science/article/abs/pii/S1525505004002926). And please note, as I mentioned before, that the one that reported 100% had a very small number of total cases…
A more recent study our group conducted in 2013 (https://www.sciencedirect.com/science/article/pii/S1525505013001819), showed that around 25% of patients reported no trauma in their histories. This translates into 1 out of 4 patients in our sample of 61 patients diagnosed using the gold standard Video-EEG test did not report psychological trauma. And of the ones who had trauma, only around 30% fulfilled criteria to be diagnosed with post-traumatic stress disorder (PTSD).
This means that only 30% of 75% of the whole sample, had developed qualifying post traumatic symptomatology.
So, what are we to make of patients with PNES who do not report any psychological trauma?  Are we to believe that they are simply repressing the traumatic memories or choosing not to share them? Or is it that PNES is a heterogenous disorder in which all the patients share one symptom (seizure-like episodes) but have an array of different psychiatric comorbidities and risk factors?
I favor the latter explanation. Currently, there are very interesting theories appearing with regard to PNES. Some are proposing that perhaps a unifying feature is that PNES is a disorder of interoception in which physiological signs and emotional cues are missed or misinterpreted. The concept of emotional dysregulation is also promising as is attachment theory.
So, what can we conclude? Clearly, we cannot conclude that trauma is CAUSAL in PNES but rather seems to have a prominent role as a RISK FACTOR in many who go on to develop this disorder.
We must also be aware that for these non-traumatized patients with PNES, a diagnosis of post-traumatic stress disorder (PTSD) is not possible, and it would be highly unusual to identify a dissociative identity disorder (DID) in them as well. These patients tend to have very different psychological mechanisms activating the seizure symptoms. As clinicians, we must be able to think in a fluid and adaptable manner and adjust our treatments to our patients’ presenting problems and characteristics.
Next topic we, as professionals, might tackle: How would you treat someone who has PNES but do not have psychological trauma in her/his list of risk factors?
Patients reading this: what are your thoughts about this topic. Does this reflect you in some way?
I am glad to see that someone has explored the possibility that someone who is diagnosed with PNES can have no previous trauma. I have PNES but did not suffer a trauma. My therapist said it is due to repressed anxiety and depression that I have been dealing with for many years. I would love to know how someone like me would be treated. I have been having seizures for 2 years now. I started with 18-20 seizures a day and I still have at least 1-2 per week. I was hoping to be seizure free by now. Thank you
This reflects my adult son. He has had no PTSD to our knowledge, but he also has intellectual disabilities, which disabilities add an additional challenge for his therapist.
This is an extremely important discussion. I believe there are probably many answers to this question. I find the theory regarding disrupted enteroception interesting, and likely going in the right direction. It considers the full role of the nervous system, and not just the brain, or the “mind”, in the etiology of PNES. For me, maintaining a strong enteroceptive awareness and attention is key to being able to manage my seizures and function. Functional distruptions in body systems are recognized for other systems- the nervous system deserves the same in depth comprehension and study, in all of its aspects.
Another aspect that needs attention is the evaluation process in those with PNES, PTSD, and dissociation. A dissociative system is highly secretive and is built in childhood with the role of maintaining the secrecy of the trauma to the external world, as well as maintaining the secrecy of the trauma to internal parts as well. There often needs to be an extreme feeling of safety both in the individual’s life circumstances as well as in the therapeutic relationship for the system to reveal any symptoms related to PTSD or trauma. For complex trauma survivors this level of therapeutic trust can take years to achieve. PNES can often be the first revelation of the trauma, with the rest taking many years to recognize, define, and categorize. Alexithymia related to dissociative processes can also hinder the ability of patients to accurately self report symptoms, as well as decreased health care literacy in general which can interfere with patient diagnosis. For example, it can take a lot of psychoeducation for a person to truly understand the meaning of the word “flashback” and to relate that to one’s personal experiences. So if a neurologist asks, “are you experiencing flasbacks?” there first needs to be a determination if the patient truly understands the word, can relate to it, has observed it in others, can sense internally what it would look and feel like on multiple sensory levels, etc, in order to be able to accurately self report.
Trauma related literacy is also extremely deficient in the medical and mental health care professions. In my experiences, providers often shut down discussion, questions, reporting on symptoms, etc. There is an enormous amount of routine shaming of trauma survivors in the health care system, whether intentional or due to lack of provider literacy and comfort. Having the courage to be able to “come out” as a trauma survivor has taken me years of work on self compassion and developing a capacity to recover from the frequent patient shaming. There is also an enormous amount of disinformation that has poisoned the health care system, and especially psychiatry, regarding dissociation and trauma. The end result of this is that patients get so much conflicting information, misinformation, and gaslighting about their reality- from the professionals that they are attempting to learn from. So we need to consider the context of general safety for trauma survivors in the health care system altogether, and the role that plays in accurate diagnosis of trauma related disorders and PNES.
For myself, it has taken me five years in therapy to be able to look back on my life and recognize the multiple signs of PTSD I have exhibited throughout childhood and adulthood, because of the subtlety due to the dissociation. Clearly the signs were there, but I lacked the language and the education on trauma and especially dissociation to be able to accurately describe my symptoms. And when I was asked about PTSD or trauma by health care professionals, I reported that I had none.
So much to think about here. Thank you, Dr. Myers!
Honestly, I have PNES and CPTSD. I learned I had PNES first. I have a ton of trauma but had no memory or words to describe it. I didn’t recognize it as trauma or PTSD. I was asked repeatedly by professionals and I said no and really meant it. 6 years later I finally figured it out from a trauma specialist. I wish epilepsy specialists would work with trauma specialists in this area it is much needed. Many who have PNES have trauma they just don’t know it, don’t know what trauma is, and cannot get the words. There is no way most people will report trauma to some random medical person they so not know. You won’t get all the answers. A lot of our PNES are somatic flashbacks that we do not recognize but if an epilepsy doctor and a trauma specialist watched you be able to put the pieces together and talk to the patient.