Yesterday, an article in print and video format came out in which a Canadian firefighter describes the long road he traveled with his diagnosis of PNES. In it, he e
xplains how he started to have problems after experiencing three sequential traumatic experiences. These, first led to developing post-traumatic stress disorder, and then progressed into PNES (a health condition that is woefully unknown to most). His seizures were characterized by violent twitching of head, neck and upper body and over time, became what appeared to be full blown seizures.
This is his article: http://www.cbc.ca/beta/news/canada/edmonton/fort-mcmurray-firefighter-battling-little-known-condition-brought-on-by-extreme-trauma-1.4494093
In the article, he describes how he met with what is unfortunately not uncommon for those diagnosed with PNES-medical staff who had never heard of his health condition and who turned him away and dismissed him because he was suspected of faking. Fortunately, one psychologist in his area had heard of PNES and suggested it as a possibility. That tidbit of information is what he and his wife needed to start researching and even figuring out where to find help. In order to get treatment, they had to travel all the way to NY to the Northeast Regional Epilepsy Group and meet with me.
By the time he arrived in New York, he was having multiple episodes per day.
In this article, he describes how he was treated with a type of psychotherapy called prolonged exposure therapy (or PE for short). This treatment is a type of cognitive behavioral therapy that targets post-traumatic stress disorder symptoms and has been proven to be highly effective. In fact, it has been officially adopted by the US Veteran’s Administration to treat veterans and active military diagnosed with PTSD. PE was also recognized last year as a “strongly recommended” form of treatment for PTSD by the American Psychological Association.
To read more about PE, visit the APA or the VA pages where clear explanations are provided:
APA explanation of PE: http://www.apa.org/ptsd-guideline/treatments/prolonged-exposure.aspx
Veteran’s Administration explanation of PE: https://www.ptsd.va.gov/public/treatment/therapy-med/prolonged-exposure-therapy.asp
In recent years, at the Northeast Regional Epilepsy Group, we have been researching an adaptation of PE for PTSD and PNES. The treatment we provide is actually very similar to the traditional PE with some adaptations made for the seizures (e.g. we assess seizures at the outset and monitor them every week, we come up with appropriate responses to seizures if they occur in the office, etc.). We have published articles on our findings. The links can be found here:
http://www.sciencedirect.com/science/article/pii/S1525505016304334
It is my profound desire that in the near future, patients will not have to travel across state lines or to foreign countries to receive appropriate treatment for PNES. Prolonged exposure is looking like a good treatment option for dually diagnosed (PTSD and PNES) patients. Since there are many therapists certified in the administration of PE, hopefully, many of those therapists will be available soon.
Please read in International Journal of Epilepsy. Published online 8-14-18. “A Proposed Etiology of Psychogenic Nonepileptic Seizures.”