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 …
stigma
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 …
New International Research Project for persons living with PNES (NEAD) Read More »
Pseudoseizures, the bias held by some health professionals and this really has to stop!
Warning: the content in this blog post may be upsetting and hurtful to the reader-it contains insulting and coarse language found on-line describing patients with PNES For a few months three of us have been working on a project examining how often PNES (and all the other names that this condition goes by) appears …
Pseudoseizures, the bias held by some health professionals and this really has to stop! Read More »
Psychogenic non-epileptic seizures was prominently featured at the American Epilepsy Society Meeting (AES) in Seattle, WA in December 2014
The condition of psychogenic non-epileptic seizures has for a very long time been a bit of an orphan in the health field. It can take up to seven years on average to receive the right diagnosis and even once it is made, too often the patients experience a “ping pong effect” of being referred from …
Psychogenic non-epileptic seizures: beginning a grassroots movement on September 20, 2014?
Even though psychogenic disorders, including psychogenic non-epileptic seizures (PNES) have been around for centuries, they continue to be the subject of ignorance and stigma. Often, the general public as well as health professionals (including emergency medical personnel, neurologists, and mental health professionals) do not understand them and can end up making things worse. Patients and …
Health Professionals Need to become educated about Psychogenic seizures (PNES)
Recently I read a couple of comments about psychogenic seizures on an epilepsy professional Forum and was thoroughly disappointed and irritated to say the least. Although the tone of the comments was essentially professional and apparently trying to be helpful, I was taken aback by how dismissively the PNES patient was spoken of by these …
Health Professionals Need to become educated about Psychogenic seizures (PNES) Read More »
Katie offers advice on psychogenic non-epileptic seizures at the workplace
Katie is contributing this month’s blog post. In it she gives useful advice based on her own experiences about how to deal with PNES in the workplace. She describes “The Talk” that you may want to have with your boss and workmates and how you might explain to them what you need them to do …
Katie offers advice on psychogenic non-epileptic seizures at the workplace Read More »
Psychogenic non-epileptic seizures: Ming shares her story of living with PNES
My psychogenic seizures began like this: I was exposed to “Workplace Bullying.” Even though I had exemplary yearly evaluations my supervisor began the bullying and as it increased I reported it to the head boss. They planned to have 5 back to 5 meetings in one day with him and others (there’s a term for …
Psychogenic non-epileptic seizures: Ming shares her story of living with PNES Read More »
Treating Psychogenic non-epileptic seizures: Only half of US psychiatrists accept payment through health insurance
An article came out earlier this week in USA Today that underscored a very serious problem that persons with psychogenic non epileptic seizures (and other mental health conditions) face. Only half of psychiatrists accept insurance which means that if you need treatment you need to be prepared to pay large out-of-pocket fees. This is not …
Psychiatry and Psychology are dropping the ball when it comes to psychogenic non epileptic seizures
Dr. Selim Benbadis published an excellent editorial article in the Neuropsychiatry Journal this year in which he called out both the American Psychological and American Psychiatric Association for the absence of information about Psychogenic non-epileptic seizures (conversion disorders) they have on their sites. He pointed out that both associations have a plethora of mental health …