What you need to know if psychogenic non-epileptic seizures (PNES) are part of your life

pnes-ribbonPsychogenic non-epileptic seizures will be highlighted for the third year in a row when the Northeast Regional Epilepsy Group (NEREG) holds its annual PNES conference in New Jersey on October 29, 2016. As always, the conference is free of charge and open to anyone who is interested in learning more about psychogenic seizures; this includes patients, caregivers, friends, nurses, and mental health professionals.

Over the past 2 years, we have had nearly 200 attendees and this year we expect at least another 100 audience members. The primary purpose of the conference is to bring PNES out of the shadows by inviting expert doctors to share the most novel information about how PNES should be diagnosed, treated, and how to best live with PNES.  The second objective (which is just as important) is to foster a strong community that includes patients, caregivers, loved ones, and dedicated professionals who can work together to better the life of those living with this potentially disabling and very serious condition.

Every year, our audience comes from all over the US including New York, New Jersey, Connecticut, Pennsylvania, Louisiana, Ohio, New Hampshire, and Maine. The last two years we even had an overseas guest from the Netherlands!

This year, we are honored to have world expert in pediatric PNES, Dr. Rochelle Caplan of UCLA join us to speak about Pediatric Psychogenic Non-epileptic Seizures: Risk Factors, Diagnosis, and Treatment. She will explain how risk factors for PNES in children are very different than those found in adults.  This is essential information for health professionals and for parents.

In addition, we will have Dr. Lorna Myers, Director of the NEREG PNES Treatment Program offer 1) an Introduction to Psychogenic non-epileptic seizures, 2) explain existing treatments for adults with PNES, and present available resources to maintain quality of life for those living with PNES. Epileptologist and Associate Director of NEREG, Dr. Christos Lambrakis will explain how PNES is diagnosed using a Video-EEG and all the details that go into making the correct diagnosis. Clinical neuropsychologist and co-director of the NEREG Neuropsychology Department, Dr. Robert Trobliger will tell the audience about pediatric psychogenic non-epileptic seizures-diagnosis and treatment from a neuropsychologist’s perspective.

Just like we did last year, we will also allot time to give a voice to PNES stars- Kate Berger, author of View from the floor: Psychogenic non-epileptic seizures: A patient’s perspective is planning on joining the conference through Skype. PNES advocates Lee Paolella (designer who raises awareness of PNES through her graphics) and Eric L. Nelson (PNES advocate and the person who proposed the official awareness colors of PNES) and Millie Nelson (founder of the PNES caregivers Facebook page) will also be on hand to speak with others interested in becoming more active in the movement.

To register for this conference: http://nonepilepticseizures.com/epilepsy-psychogenic-NES-events-news-conference-2016-10-29.php

10 thoughts on “What you need to know if psychogenic non-epileptic seizures (PNES) are part of your life”

  1. Debby Chambers

    I have just purchased Lorna Myers & would like to understand how the epilepsy centre works with the non epileptic seizures, and have we anything similar here in the UK. Plus would like to understand more on triggers & drugs for epilepsy.

    1. Debby, our epilepsy center works with PNES/NEAD in the form of a multidisciplinary team that includes epileptologists, neuropsychologists, clinical psychologists, and psychiatrists. Once a patient receives the diagnosis of PNES, they are referred for neuropsychological testing and then for a clinical psychology intake interview. We offer two types of psychotherapy for patients depending on whether the patient has PNES-alone or PNES as well as post traumatic stress disorder (PTSD). In Great Britain, you have something similar I believe. Check this link out: http://www.nonepilepticattacks.info/index.html

      best of luck

  2. Dr. P. H. Elovitz

    I would like to register for the Oct. 29, 2016 conference and ASAP get more information on PNES.

  3. darran rigley

    Hi my sister suffers from this in the UK and hardly anybody has heard of it so let’s get awareness out there good luck.

  4. Millie and I are looking forward to the conference this year ! Always great to meet up with old friends and make new ones.

  5. I have suffered from PNES for about 8 years. I never thought something like this was possible. Thank you so much for opening up the topic on this condition. I have been reading your book, PNES: A Guide. If anyone hasn’t read this book yet, I highly suggest you do. It is so very informative. It even prepared me for starting to make calls to find a psychologist. The stories in the book are spot on, the way doctors treat us. Thank you so much for this!

  6. Dr. Myers, My daughter is 19 yrs. old Has been diagnose with PNES and is currently going to see Dr. Wright in Lynchburg, Va. at Human Kind it is a 3 1/2 hour drive.He was one of the Doctors on your list to treat PNES we are very please with him and he has help reduced her seizures from 56 a week to seven a week, but she has passing out spells also. She is having her seizure of a morning then she will have passing out spells any where to 3 to 9 a day what else could be causes these fainting spells. We are also thinking about taking her to National Research Int. in Maryland to see if there might be a under laying condition she might have. We live in Clinton N.C. we have taking her to Duke Universary Hospital in Durhan N.C. which is a 1 and 1/2 hrs. away then we drive to Lynchburg Va. once a week to see Dr. Wright for a 2 hr. sessions been doing this since July 20,2016. In Oct. we missed 3 wks because of roads and Hurricane Matthews aftermaths. All together she has been to 16 sessions 2 hrs. long. to this date. He also feels like there is a underlying condition just would like to know if you have any subjections on what could be causing this? Just need some answers and we are willing to carry her where ever we have too. Her problems started in Jan.2116.What do you think?

  7. I’m looking for information on physicians that work with PNES diagnosis and treatment in Louisiana. Thanks.

    1. This page mentions mental health professionals who specialize in or are interested in PNES (unfortunately, none are in Louisiana-this page is a work in progress) http://nonepilepticseizures.com/epilepsy-psychogenic-NES-information-referral-sites.php

      Otherwise, you might try looking on this find a therapist tab. Specialists listed here work with dissociative disorders-PNES can be considered a form of dissociative disorder. You only need to fill in your state, no need to fill every blank space. http://www.isst-d.org/default.asp?contentID=18

      Best of luck

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