Feature Article: The Psychogenic non-epileptic seizure Pocketbook by Drs. Julia Doss and Lorna Myers
Drs. Julia Doss and Lorna Myers recently published The Psychogenic non-epileptic seizure Pocketbook. The book's intended audience is mainly clinicians (e.g., therapists, nurses, and other health care professionals) who are working for the first time with a patient diagnosed with PNES. We sat down with one of the authors, Dr. Lorna Myers, to ask her about this newest publication and how it came about.
Could you tell us about why you wrote this book?
Lorna Myers (LM): I've been treating patients diagnosed with psychogenic non-epileptic seizures (PNES) for over twenty years and I realized that a book like this was absent and sorely needed.
In the last decade, there have been major improvements for patients diagnosed with PNES. These include a fair number of published reports on new treatments, books for patients and loved ones including my book, Psychogenic Non-epileptic Seizures: A guide, and books written by authors who are living with PNES, such as In our own words: Stories of those living with, learning from and overcoming the challenges of PNES, View from the floor, and On the Floor Again. A scholarship for students diagnosed with PNES is also now available through Epilepsy Alliance America.
However, what was still missing until this year, was a resource for clinicians who are starting to work with someone who has PNES and who need brief yet comprehensive information on this disorder in adults and youth. About once a week, I receive an email from a psychotherapist, a school nurse, or another health professional asking for advice because someone diagnosed with PNES has just come through their door. They don't know what PNES is, how to treat it, or how to manage day-to-day challenges that might come up. Sometimes they mention that they purchased Psychogenic non-epileptic seizures: A guide, but that book was written for patients, not for professionals. Furthermore, the existing books for professionals tend to be massive tomes that are terribly expensive. For someone who is not going to treat many patients with PNES, it doesn't make sense to go out and buy one of those mammoths.
The Pocketbook was born because several years ago, Dr. Doss and I ran into each other at one of the annual American Epilepsy Society meetings. We started talking about how important it would be for more clinicians to be informed about PNES so they could do a better job. We realized that a PNES pocketbook for these healthcare workers was necessary and didn't exist.
Julia Doss (JD): When I started working with youth with psychogenic non-epileptic seizures (PNES), I became aware quite quickly that there were very few clinicians who had been trained in the treatment of this disorder. In my early career I worked on a level 4 epilepsy unit and we saw multiple youth per week that had this diagnosis. I was disheartened that following a thorough diagnosis and explanation of how to get help, there were very few people in the community to refer these patients to. When Dr. Myers and I first began discussing this book we both felt that we wanted to reach those clinicians in the field who were not necessarily in centers where large numbers of patients with PNES are referred. The general therapists in the community get far more referrals than do those individuals who work in hospital epilepsy units. We wanted to reach those clinicians who did not have experience but who wanted to learn and use their good clinical skills with a new population. This book is designed to be a stepping-stone for clinicians to gain practical information about this disorder and begin the process of adapting their current method of practicing to a patient with PNES. We recognize that often the methods many of us have used with patients with anxiety, depression or chronic medical illness can also be applied when working with PNES, and with appropriate education and perhaps a bit of additional training or supervision, seasoned clinicians can successfully work with patients with PNES.
Can you tell us about your background and how you have acquired the expertise you have in PNES?
LM: For two decades I have seen hundreds of patients with PNES, treated them, ran support groups, presented at patient and professional conferences, published in peer-reviewed journals, wrote book chapters, and books, and conducted research studies. Most recently, I'm the Principal Investigator on a randomized controlled trial for PNES in which two types of treatment are offered and compared. These years of experience have given me a solid fund of knowledge that I can now share with others.
JD: I have been in practice for nearly 20 years and all of that time has been spent working with youth with complex medical disorders and PNES. I co-authored a treatment guide focused on youth with PNES and have published several chapters aimed at describing pediatric and family treatment of PNES. My previous research has focused on both risk factors associated with the development of this disorder in youth, as well as treatment.
Dr. Myers and I have known each other for many years. We co-chaired the PNES SIG through the American Epilepsy Society and were on the PNES task force. Our experiences and understanding of PNES are wonderful compliments. I was happy to work with her on getting this work out to the general clinician, as we share the mission to enhance education in this area for our patients.
What is the intended audience for this book?
LM: We wrote the book with psychotherapists, counselors, nurses, school staff, and physicians in mind. It would be wonderful to see the Pocketbook in community clinics, private offices, on nurses' and doctors' desks and wherever else someone with PNES is being seen by a professional who is unfamiliar with PNES. We really hope the Pocketbook will expand the number of professionals who know what PNES is and who will then decide to treat these patients. We hope that the days when patients are turned away because the provider doesn't know what PNES is, will soon be a thing of the past.
JD: Despite significant advances in our understanding of this disorder and our efforts to de-stigmatize the diagnosis, many patients continue to struggle to find appropriate treatment. 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. This book was written with the intention of helping clinicians feel more comfortable in using the skills they already have to treat this population after getting more education and/or supervision. Some of the information in the book is quite practical, with recommendations about schooling, work and living with symptoms. This information can also be helpful to other professionals working with individuals with PNES, the patients and their families.
The book is available on Amazon: The Psychogenic Non-Epileptic Seizures Pocketbook: also known as Conversion disorder with seizures Dissociative seizures Functional seizures ... seizures Nonepileptic attack disorder: Doss, Julia, Myers, Lorna: 9798851431050: Amazon.com: Books
