Living with psychogenic nonepileptic seizures

Published: October 03 2016
Last updated: September 28 2022

What patients say about living with psychogenic nonepileptic seizures: A systematic synthesis of qualitative studies

Introduction from Dr Markus Reuber, editor-in-chief of Seizure

Seizure 41 has published What patients say about living with psychogenic nonepileptic seizures: A systematic synthesis of qualitative studies

The Editor’s Choice feature of this issue of Seizure is an article by Gregg Rawlings and Markus Reuber which deals with patients’ own perspective of living with psychogenic non-epileptic seizures (PNES) [1]. By reviewing and synthesizesing previous qualitative studies about PNES this study adds a subjective and emotional note to experimental controlled studies which dominate recent research. In doing so, this review taps directly into issues which are of major importance for patients with PNES but which have rarely been explicitly addressed: what was the patient’s illness experience until the diagnosis of PNES was made, how do patients live with the uncertainty associated with this diagnosis, what are the barriers or facilitating factors for getting the diagnosis, and what is the impact of the condition on daily life?

The authors reviewed 25 articles based on a literature search which used semi structured or open interviews and phenomenological, thematic, content or discourse analyses. The picture which emerges from the review is challenging. Five main themes and 24 subthemes resulted from the analysis dealing with seizure events, diagnosis, treatment, emotional events and impact on daily life.

Several aspects of this review should be of particular interest to physicians involved in the diagnosis and treatment of patients with PNES. Readers of this review learn:

  1. That patients’ seizure descriptions are often vague with patients resisting attempts to focus on PNES symptoms. Metaphoric conceptualizations suggest patients feel as actors rather than as being acted on by their seizures.
  2. The diagnosis is often a lengthy process, its communication is difficult and often meets patients’ resistance.
  3. Misdiagnoses are a major problem. Until we learned about the possible range of presentations of frontal lobe epilepsies many patients with this disorder were misdiagnosed as PNES, and we are well aware that untreated epilepsies can be associated with life-threatening conditions. However, patients with PNES misdiagnosed as having epilepsy for many years, or receiving intensive care treatment for prolonged PNES mimicking status epilepticus are also exposed to high risk of iatrogenic injury.
  4. Expert knowledge, an understanding of PNES and a correct attitude are essential. Attitudes which are patronizing, seem to blame the patient or lack empathy are counterproductive. The explanation of the diagnosis needs to be clear and shouldn’t keep the door open for organic interpretations. Prescribing antiepileptic drugs “to be on the safe side” raises patients’ doubts about the diagnosis.
  5. PNES have consequences for patients’ lives. While they experience the support of family and friends as very helpful, patients are at high risk of becoming dependent on others, of isolation, and of problems with finding work.

Overall this demonstrates that, it is essential from the patient´s point of view to receive an early and clear diagnosis combined with an understanding they have a disorder which requires treatment. Physicians have a key role in this process. Expert knowledge about PNES, monitoring facilities, and an empathetic, non-judgmental attitude are essential prerequisites for the early identification of PNES and for the prevention of avoidable physical and psychosocial consequences of the problem.

PNES continue to represent a challenge for health professionals which needs to be faced and which can only be overcome by education and training. This Editor’s Choice article should help with this by telling readers more about how patients experience this disorder.

(1) Rawlings, G & Reuber M. What patients say about living with psychogenic nonepileptic seizures: A systematic synthesis of qualitative studies. Seizure 2016; 41: 100-111.