Recently, Goldstein et al published their results from a randomized CBT treatment versus “treatment as usual” (TAU) study in which treatment outcome in patients who had a history of dissociative seizures was compared (Goldstein et al., 2020).
The study is the largest and most well-designed study to date. It included an initial 3-month observation period — during which patients were asked to keep a careful log of their seizures. A total of 368 patients completed seizure diaries and questionnaires and 182 were randomly placed in a TAU group and 186 were randomly placed in a TAU plus CBT group.
The most eagerly awaited result: primary seizure outcome, unfortunately did not differ significantly between the two groups. However, the CBT group did differ on other important measures: better health-related quality of life and psychosocial functioning, lower psychological distress and less somatic symptoms. Also, quite importantly, no serious adverse outcomes were associated with the CBT modality.
Of course, it was disappointing that the primary outcome measure of seizure severity/frequency did not differ significantly between the two groups. This has led for some to question whether seizure frequency should be the main primary outcome measure in treatment studies for PNES.
I don’t think that we should throw the baby out with the bathwater, just because we don’t like the result. Obviously, seizure severity and frequency is a major variable in this patient population. After having met with hundreds of patients diagnosed with PNES over the last 20 years, I can assert that reduction or elimination of seizures is an incredibly important outcome from the patients’ perspective.
So, an interesting possibility put forth by Dr. David Perez in his commentary (Perez, 2020) is “whether the research community should continue pursuing a one-size-fits-all type of design for clinical trials involving dissociative seizures, in light of the trial findings to date, and the well-established heterogeneity observed in this population.” What he means by this is that perhaps the CBT that was used in this large sample did not get the positive results we were expecting regarding seizures not because CBT does not work on psychogenic seizures but rather because they applied it to a heterogeneous group of patients diagnosed with PNES. What this means is: Perhaps patients who do not report significant psychological trauma and instead have problems with stress coping and assertiveness, etc. might do well with this form of CBT, while someone who has PNES and post traumatic stress disorder, for example, might benefit more from a tailored trauma-focused treatment (e.g. prolonged exposure), and someone with intense emotional dysregulation as their key feature might benefit from a PNES-tailored dialectical behavioral treatment (DBT), mindfulness-based modality.
Readers: what is your opinion on this topic?
References:
Goldstein, L. H., Robinson, E. J., Mellers, J. D. C., Stone, J., Carson, A., Reuber, M., . . . Yogarajah, M. (2020). Cognitive behavioural therapy for adults with dissociative seizures (CODES): a pragmatic, multicentre, randomised controlled trial. The Lancet Psychiatry, 7(6), 491-505. doi:10.1016/S2215-0366(20)30128-0
Perez, D. L. (2020). The CODES trial for dissociative seizures: a landmark study and inflection point. The Lancet Psychiatry, 7(6), 464-465. doi:10.1016/S2215-0366(20)30143-7
I have PNES from PTSD trauma and I have found that DBT has been very helpful for helping me control my stress responses and that EMDR has helped tremendously in bringing down seizure frequency.
When I was 62, I was prematurely diagnosed with MS. Long story short, about six months later, before I got the all-clear on the MS, I ended up in the hospital with what they thought was a stroke then epilepsy. They did the video test, and it was PNES.Very frequent and severe for the next three months. Did EMDR and CBT. I’ve been seizure free for over two years. Just thought I’d contribute
On the torturous road toward diagnosis to the fork (roundabout may be a better descriptor) of treatment options, I have wondered about the general effectiveness of CBT for PNES. Certainly, it has helped me challenge distracting road signs urging me to get off course, but it hasn’t really helped with the seizures themselves. It helps with the stress of having them, of course, but not seemingly in controlling them. I look forward to learning more about PTSD treatments along with understanding DBT better. In the meantime, when a seizure hits, I’m trying to view it as a roadside rest stop rather than a life-altering cliff to climb back up from. Thank you for your guidebooks (and their updates) to help us on our way.
Our 43 year old daughter was diagnosed with PNES in 2018. However, looking back over her lifetime, she had “pseudo” seizures many times in addition to epileptic (neuro) seizures.
Interestingly, we discovered that the majority of the time, her PNES are triggered by toxicity in her system. Initially in Feb, 2018, we discovered she had a toxic reaction to both Topiramax and Fluoxetine. In addition, she had a severe UTI. For the next year, each time she started having PNES, we had a urine culture and she had the beginnings of a UTI.
I learned that many times a sexual assault victim will withhold their urine. (Our daughter has autism and Intellectual disabilities also.)
That changed in the summer of 2019. Her cultures came back fine, and she’d be sent home stating she was constipated. Logic said this was similar to withholding urine. Research confirmed and toxicity was leaching into her system.
We started her on a regimen of stool softeners and Miralax. It was difficult to get her consistent with taking these as some of her staff would stop giving to her if she had a BM. In August, we met with a Doctor of Internal Medicine. He confirmed the need to take Miralax daily unless BM was a #7 on the Bristol Chart.
Interestingly, her PNES has significantly reduced. She will have 1-2 with PMS.
We monitor and track this consistently. We would LOVE to be a part of a study!
I think PNES treatment requires a variety of modalities- and CBT is just a possible start. However, for trauma survivors with PNES, trauma therapy is extremely important, along with an integrated- and long term- course of therapy, which can include CBT, DBT, somatic therapies, etc.