Reading materials on PNES


A nurse's perspective of PNES

I have worked in health care as a registered nurse for almost 30 years. Epilepsy and Psychogenic Non-epileptic (PNES) patient populations have been part of my work world since 2002.

I really believe that professionals who take the extra time to learn about a person's story; impact the persons' personal lives, as well as the professional connection between patient and provider.

PNES has actually been a part of my personal life since 1982. My mother was told two years before she passed that she had "pseudo seizures." She died from colon cancer and never really had the opportunity to work through what that diagnosis meant. I never pursued it because I didn't have the energy to really know what this meant for her either; she had so many other health concerns. She was in a care center and despite the diagnosis of PNES, remained on antiepileptic drugs until her death.

I am confident that my mom's symptoms were secondary to years of physical and emotional abuse from my father. I recall growing up and hearing my mom referenced as "Crazy Aunt Dorothy" is at is again-she passed out at the reception or had fits shortly after she was married.
I am a clinical nurse specialist and have the awesome job of addressing patient, staff and environment concerns of this patient population. I also teach seizure awareness courses and have a personal goal not to let any provider or clinician of any kind that I interact with reference these events as "pseudo"! I have been able to convince several of our neurology residents to admit patients that they are concerned about to the Epilepsy Monitoring Unit (EMU). I also have been there side by side with patients and families when our nurse practitioner pulls up their videos and provides explanations beyond the initial information given.

Recently, our 12-bed inpatient EMU has begun consulting with me after the providers have given the "diagnosis" message. We have a handout that the patient gets and are starting to hand out the Myers' Psychogenic nonepileptic seizure guide. Unfortunately, sometimes this happens on day of discharge leaving us with very little time to process. Nevertheless, at least the discussion commences and often follow up calls are made post discharge. This process is not without its challenges. These are not limited to payment reimbursement and time constraints. However, it is very valuable and we continue to monitor return admissions; or new admissions to other EMU's in our metropolitan areas.
I always ask patients, families and staff, "what does the diagnosis you were given mean to you?" I get comments of relief, some of denial, some of yearning for more explanation. I compare things to neurological symptoms being the water in the glass and the psychogenic event being the water spilled over. I go on to explain that the questions likely will not all be answered in one discussion.

On occasion I hear how their world has improved, how they can now drive and not feel like they need to live in fear. I never have had anyone ask me to leave or not open up about what their worries are. I believe a nurse's job is to listen and to also know when additional interventions are needed. Some families have asked for additional assistance when the patient leaves the hospital. Unfortunately, not everyone has the resources to do this.

Madona Dawn Plueger
Neuroscience Clinical Nurse Specialist
Barrow Neurological Institute
Phoenix, Arizona 85013