This weekend, I was reading a paper by Dr. Gaston Baslet and his colleagues (Treatment of Psychogenic non-epileptic seizures: Updated review and findings from our mindfulness-based intervention case series, 2014 Clinical EEG and Neuroscience). On page 9 the authors discuss something that was not the main topic of the paper, but that struck me as worthy of being highlighted: Challenges in the management of PNES.
This section of the article discusses some things that we have talked about before in previous posts: 1) how mental health providers continue to be part of the challenge in that they have limited knowledge of the condition and 2) sometimes further complicate things by not “believing” the veracity of results obtained through video-EEG monitoring. The latter is especially troubling because having a clinician doubt the diagnosis can lead to patients being bounced back and forth like a ping pong between neurology and psychiatry/psychology.
This section of the article also discussed a number of ways in which patients can themselves too sometimes be part of the challenge. It is important to be aware of this because it can present a huge obstacle to recovery. One particular challenge the article mentions and that I think is a major one is that there is often a worse prognosis seen in patients who reject the diagnosis when it is presented even after having the gold standard video-EEG test and continue to seek a “medical” rather than “psychological” answer.
I will be the first to say, make sure you have the correct diagnosis and only then can we start working in therapy, but when a patient is tenaciously closed off and has continued to have countless EEGs and has gone from one specialist to another, it’s necessary for the patient and their loved ones to stop and look carefully at why this “psychological” diagnosis is so hard to accept and if this difficulty is playing a role in the continued challenges being faced by all.
By the way, I recommend the entire Baslet et al. article to those who are interested in mindfulness for PNES. It is really excellent. http://www.ncbi.nlm.nih.gov/pubmed/25465435
i agree with Dr. Baslet’s point. Refuting the psychological cause of PNES can exacerbate the condition. However, I want to also add that many people have been given this diagnosis and then left with no options for treatment. So many healthcare professionals have no idea how to treat PNES and this disorder, it’s causes and treatments are just beginning to come to the forefront in the medical community.
We need to keep educating others about PNES.
Thank you, Lorna.
Point well taken, Mary. There are plenty of challenges to go around. And being given a diagnosis and nothing more, is a huge disservice. There is much needed.