I must receive an average of 10 emails a week from across the US from persons diagnosed with psychogenic seizures (PNES), family members, nurses, and sometimes therapists. I try very hard to respond to every one as fully as I can, including links and other resources and as quickly as I can because I feel the sense of urgency in them.
Some topics keep popping up in these emails. The most common one is that the person who is writing has been given a diagnosis of PNES at an epilepsy center and has been sent on their “merry way” advised to find a mental health professional (believe me, I have a future blog post planned on this topic). When the patient or family member tries to find a psychotherapist who will treat this condition, they often encounter one of two things: 1) “I have never heard of this diagnosis” (and can’t treat you) and 2) if the patient is accepted into the practice “There must be a mistake because the seizure you just had in my office cannot possibly be psychological in nature.”
I recently published a webinar that is now on YouTube to address this problem. It is meant to be a primer for psychologists and psychotherapists. Patients can also choose to share with their therapists if need be. I hope it will provide therapists with the necessary information to gain confidence in working with persons with PNES.
In the webinar I go over FAQs and basic facts about PNES, explain how a diagnosis of PNES is made, discuss the main psychiatric comorbidities of PNES (and more importantly, underscore that PNES is clearly a psychological condition that falls smack in the middle of psychologists’ scope of practice), go over empirical evidence for effective psychotherapeutic treatments, and finally close with practical tips on how to work with a patient who carries a diagnosis of psychogenic seizures.
I truly hope that in the near future I will see a decrease in emails that tell me what a struggle it is to find a psychotherapist to treat their PNES. Please feel free to share with anyone you think could benefit from this.
This is the webinar:
You have hit the bullseye of treatment challenges! Other than the very few mental health care providers who are comfortable treating the underlying psychiatric disorder and simultaneously manage the PNES; about the best alternative seems to be finidng a therapist open to new information and willing to walk alongside the patient and try to figure out how to work with this. I hope there will be established some sort of continuing education for healthcare providors to certify those who treat people with PNES. It must be exhausting and frustrating getting these weekly e-mails. I ran into a nurse just this week who works in oncology and has had PNES patients they have been requested to video monitor on their unit. I was able to put a book in her hand and say there is new information on this and she was very open to it and sharing with others. Thank you for putting up the webinar. This will be a quick way to direct providers to information. I do think it would be helpful to have a webinar on how to work with a person moving through a seizure. I think this would be helpful for both family members of PNES patients as well as healthcare providers.. I don’t know if there are some basic universal techniques that can help a person moving through a seizure. We certainly discovered things through trial and error that can help or make it worse. It takes away the fear of PNES as that fear is replaced with understanding. Thank you for continuing to lead the way!