Recently, I put out an invitation to persons living with PNES to submit writing samples (poems, write-ups, personal stories, etc). The purpose of opening up the blog like this is to give a voice to persons living with PNES on a platform that is read in the US and abroad and that will reach others […]
PNES awareness
Riding 40 miles for seizures #2
A year ago, riding in a bike marathon seemed like an impossible challenge since I had only ever ridden my bicycle recreationally, had never done anything marathon-like ever before and had not even been an especially athletic child or youth growing up. Now, less than a year later, bike riding through the Northeast of the
New Publication examines how psychogenic non-epileptic seizures (PNES or NEAD) are represented on the Internet.
Many health professionals still hold misconceptions regarding PNES itself. Many still believe that the psychogenic episodes are somehow voluntary in nature. Others are uncertain about prognosis and when it comes to treatment many tend to offer a knee-jerk suggestion of CBT (cognitive behavior therapy) without taking into account that a substantial number of mental health
New International Research Project for persons living with PNES (NEAD)
Six months ago, Prof. Markus Reuber and one of his doctoral graduate students launched a research study in which patients diagnosed with PNES and epilepsy were invited to participate in a writing experience that tested whether this helped them feel more in control of their condition and reduce their seizures and improve their quality of
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Third Annual Psychogenic Seizures (PNES) Non epileptic attack disorder Conference to be held in New Jersey, USA on October 29, 2016
This year’s conference promises to be superb. We are honored to have as our invited speaker, pediatric neuropsychiatrist, Dr. Rochelle Caplan of UCLA (http://people.healthsciences.ucla.edu/institution/personnel?personnel_id=8660) and we will have several other wonderful speakers talking about both PNES diagnosis and treatment in adults and children. We are also working to set up talks by a few new
A Bike-a-thon to raise funds for Epilepsy Free which grants scholarships to persons with epilepsy and psychogenic non-epileptic seizures (PNES or NEAD)
When I was a kid, I was not especially athletic. Rather, I was more on the bookish side of things. In fact, I am a bit ashamed of admitting but on more than one occasion, I convinced my mother to obtain a medical note for me so that I would be allowed to not participate
View from the Floor- Psychogenic non-epileptic seizures: A Patient’s Perspective
I absolutely love this book! View from the Floor is such a delightful book that even after reading it 2 times, I still find it shakes me with its honesty and its superb writing style. Kate Berger speaks in a clear and strong voice throughout and shares generously with the reader. If you have ever
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A historic meeting in Mahwah, NJ shines a light on psychogenic non-epileptic seizures
A month ago, we were still in the throes of planning our first conference on psychogenic non-epileptic seizures (PNES). We had PNES brochures printed up, we had ordered many copies of “Psychogenic non-epileptic Seizures: A Guide” to give out at the registration desk, we had purple and teal charms ready, and all our speakers were
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Psychogenic non-epileptic seizures: Love and Light
My name is JJ and I am 22. My seizures have been a sporadic problem since I was 13. They really became a problem December 2013. I had quit drinking in September, I later discovered my alcoholism was suppressing my seizures. My seizures became unbearable, I was unable to do the things I used
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Why can’t you just stop having these Psychogenic non-epileptic seizures (PNESs)?
Patients diagnosed with PNES sometimes share with me that they have encountered people who seem to think that they should be able to stop the seizures by somehow willing them away. Those who hold this erroneous belief are not only from the general public but also health professionals (e.g. emergency medical personnel, doctors and nurses
Why can’t you just stop having these Psychogenic non-epileptic seizures (PNESs)? Read More »