Writing the “Psychogenic Non-Epileptic Seizures Pocketbook” came about after many years of treating patients with PNES and training other clinicians in treating them. It has been humbling and rewarding to work with families and their children and watch them get better and grow into their adulthood. But this isn’t how my career initially started. In my training program and throughout my early clinical experiences, I had always wanted to treat youth who had experienced trauma. Going to graduate school in Chicago, I had the opportunity to work with youth in the foster care system and became very focused on treating children who had experienced sexual abuse. My plan was to open my own clinic and teach.
How I came to work with PNES:
While I was on my fellowship at Marshfield Clinic, I was assigned to the rehabilitation unit and had my first experience with a patient with PNES. I had never heard of a condition in which an individual can experience episodes that look like epileptic seizures, but are not due to abnormal activity in the brain. This first patient was experiencing multiple seizures per day, was unable to walk and had become frightened of eating due to fear of choking during an episode. When I met her, the family had been told that she had PNES, but there was not much of an explanation for what it was or how the body could produce these kinds of symptoms. They had learned that “stress” was a trigger, but other than the stress her seizures were giving her, she couldn’t identify any other life stressors at that time. She was popular in school, had a consistent relationship and was a straight “A” student. The explanation of stress didn’t make sense to her, or the family and it didn’t make sense to me either at the time. Not only did she seem like a pretty well-adjusted teenager, but it was hard for me to believe that “stress” could cause her body to do something so intense. I know differently now, and have come to understand this, but I’ve had nearly 20 years of education and conducted my own research to reach this point. At that time, not only had I never seen a patient with this, but I had never even been taught anything about the condition in graduate school. It was a total mystery to me. As a result, I didn’t know where to start with this patient to help her get better. I was confused, and honestly worried that this was beyond my scope, and at that time it was.
Why we wrote this book:
Unfortunately, the experience described above continues now. Despite significant advances in our understanding of this disorder and our efforts to de-stigmatize the diagnosis, many patients continue to have similar experiences. There is little that is more disheartening than learning you have a certain diagnosis and then not being able to find anyone who can help you manage and heal from it. Very often I work with patients who have been referred to psychotherapy, only to learn that their therapist has never heard of the diagnosis (as I hadn’t either when I started) and that they are on their own in trying to cope with these life-altering symptoms. Many patients give up hope and feel that they must live with these symptoms forever, and in the life of a young person, a year or several years can ruin their time in high school or college. It doesn’t have to be this way. Youth with PNES, with appropriate diagnosis and treatment, can significantly improve or experience remission in symptoms. I have seen through my years of practice how life-changing it can be to learn ways of controlling these symptoms and to finish high school, make plans for college or a career and start pursuing it. In writing this book, my hope was to provide clinicians, like myself when I was at the start of my career, a resource for helping their patients. In addition, if interested, Dr Myers and I hope to provide clinicians additional training and consultation so that they can become referral sources for these patients as well.
The Psychogenic non-epileptic Seizures Pocketbook can be found here on Amazon: https://www.amazon.com/dp/B0CFCWVZRT/ref=sr_1_1?crid=DGJGYJVCT6V7&keywords=The+psychogenic+pocketbook&qid=1691856864&s=books&sprefix=the+psychogenic+pocketbook%2Cstripbooks%2C84&sr=1-1&ufe=app_do%3Aamzn1.fos.006c50ae-5d4c-4777-9bc0-4513d670b6bc
Julia Doss, PsyD
Director/Pediatric Psychologist
Doss Clinic of Health Psychology
Minneapolis, MN
I have recently been diagnosed with PNES. I have 3-4 seizures a week. I am 60 years old and learning a lot about this. I also have various other medical conditions that warranted me to apply for Social Security disability. It’s been 7 months in ( the application) , and today I got word that I was denied. But that told me. “Most people get denied the first time”
That doesn’t help me. I’m broke, can’t work, can’t pay my bills. My husband is helping as much as he can, but he currently has a pulmonary embolism, and is on light duty at work. I am extremely depressed and feel I am lost and no where to go, but further down.
I don’t know what to do.