This month’s blog post comes to us from sunny Arizona, more specifically, Dayana Villarreal, Graduate Student, Arizona State University. Below, you are invited to read about her current research project on PNES. She hopes you may decide to take an online survey that will be used to better understand the inner workings of PNES.
When I joined the emotion research lab at Arizona State University (ASU) as a Master’s student in August of 2019, I was first introduced to psychogenic non-epileptic seizures (PNES), which my advisor Dr. Nicole Roberts was studying. At that time, I had no idea that such a condition existed, and I sought to understand more. I was deeply moved as I read testimonials of individuals with PNES, the challenges they faced, and the challenges faced by their medical team and loved ones.
One of the things that drew me to psychology was a drive to understand relationships between the brain, the body’s responses, and life experiences, especially intensely stressful ones. While I can never fully understand the experiences shared by those experiencing PNES, I want to find out ways to increase support for and knowledge about PNES. Individuals with PNES face stigma and skepticism about whether their seizures are genuine, given that there is not a firm understanding of the biological process or biological treatments. However, emotions and internal nervous system signals can have specific effects on both the brain and body. Understanding how the health and emotions of individuals are impacted by the symptoms associated with PNES is very important in order to help bridge the gap and de-stigmatize this condition.
In our current online survey as well as our previous in-person studies, we have been collecting responses from people with PNES about their past events; emotional reactions; body’s responses; attitudes and behaviors about themselves and in relationships. This is helping us get a more complete picture of how the emotion system responds in individuals who have PNES.
The research I do with Dr. Roberts in the lab also seeks to know more about the experiences shared between individuals with PNES and close others, such as romantic partners. Understanding the perspective of those closest to someone with PNES may help us learn more about PNES. This research builds on other studies we have conducted on many kinds of couples, including healthy couples from different ages and cultural backgrounds and couples under stress.
We Need Your Input
Thank you for sharing your stories and continuing to use your voices and experiences to inform research and share knowledge about PNES. Right now, we are collecting data for an ongoing survey of PNES. The survey is online (paper copies available on request) and takes about 1-2 hours to fill out (it does not need to be completed in one sitting). As noted above, the survey asks about you, your experiences with PNES, your stress and coping, and your relationships with healthcare providers and with others in your life.
If you or someone you know is at least 18 years old and experiences non-epileptic seizures, please consider participating in our survey or passing along our information. The first 50 participants with PNES will be able to receive a $35 amazon.com giftcard; participants after the first 50 will be able to be entered into a drawing for one of four $35 amazon giftcards.
For those married or in a relationship for six months or longer, we also are collecting survey responses from spouses/partners of those with PNES. The first 50 partners will be able to receive a separate $25 amazon giftcard, and partners after the first 50 will be able to be entered into a drawing for one of four $25 giftcards. Participants also can indicate that they would like to receive a copy of the findings when available. For reports and any publications, all data are kept anonymous and are only presented in group form; no specific individuals are identified. Data are ONLY for research purposes and are ONLY accessible to directly-involved and approved members of the research team.
Talking with people who experience PNES is the best way for us to learn about this condition and learn how to help. You can help us do that by directing our survey and contact information along to someone you know who has PNES. You can also contact us directly using any of the methods below.
How to Contact Us or Participate
To take the survey, simply go to: https://www.surveymonkey.com/r/SeizureStudy. The link to the partner version of the survey if applicable is: https://www.surveymonkey.com/r/SeizureStudyUSUKPartners. We ask that partners only participate if their spouse/partner with PNES is participating, and that the surveys are completed independently. If you have questions or for more information, we can be reached at asuseizurestudy@gmail.com or +1 (602) 543-4524 (our 24-hour confidential voicemail).
If you are curious about the work conducted in our research lab, check out research articles published by Dr. Roberts and collaborators with the ASU Emotion Lab.
-Dayana Villarreal, Graduate Student, Arizona State University