Dr Nick Erskine Emergency Registrar
Peer review: Dr Luke Phillips
Let’s fight the eye roll and take a closer look at what’s going on with this patient…and we’ll start with getting our nomenclature correct: what we’re suspecting here is a Psychogenic Non-Epileptiform Seizure (PNES).
How do clinicians and patients feel about PNES?
Perhaps an extreme example, but we know that healthcare providers carry preconceptions about functional seizures, and mostly receive little (or no) training about them. A systematic review of healthcare providers’ perceptions of psychogenic non-epileptiform seizures (PNES) showed five consistent themes:
- We feel uncertain about the diagnosis and treatment of PNES,
- We think of PNES as a purely “psychological problem”,
- We find patients with PNES “challenging and frustrating”,
- We don’t know who is responsible for treating patients long-term, and
- We think PNES is more deliberate/voluntary and less debilitating than epilepsy.
Meanwhile, a meta-analysis of patients’ experiences showed that they felt
- Frustrated in the diagnostic process,
- That communication of the diagnosis was poor and “difficult to make sense of”,
- That their voice was “not heard” or not “taken seriously”,
- That interactions with healthcare providers caused “considerable distress and persistent rumination” and were “not effective or supportive”,
- That they perceived their condition as physical, and
- That they had lost their “freedom or independence” and that their condition markedly affected their lives.
A somewhat damning assessment of us clinicians who swore to “first do no harm”. So let’s tackle the nebulous beast that is functional seizures.
A bit of history…
To first address the ever-changing nomenclature: In the 19th century it was called “major hysteria”, in the 20th it was “pseudoseizures”. The early 21st century labelled it “psychogenic non-epileptiform seizures” and lately it has been moving towards either “functional seizures”, “functional attacks”, or “dissociative seizures”. While the specific wording is up for debate, the general trend has been to move away from blaming the patient and more towards focussing on the functional impact the condition has. Like most of neuropsychology, the aetiology isn’t yet clear. If you cut open a cadaver and squeeze its heart you can gain a reasonable understanding of how it works. Squeezing a cadaveric brain, however, just leads to a squashed cadaveric brain. The current proposed integrative cognitive model of psychogenic non-epileptic seizures involves internal and external cues, threat perception, elevated arousal, inhibitory processing dysfunction, and a “seizure scaffold” shaped by remote patient factors like prior trauma. The end result is an involuntary state of reduced arousal and dissociation, frequently accompanied by seizure-like activity. Explaining it in a blog post for clinicians is hard enough, let alone to a distressed patient in a busy emergency department. The most readily understandable explanation I have come across is one proposed by Stone et al. They describe epileptic seizures as a “hardware problem” – an abnormal electrical discharge that we can capture on an EEG. Non-epileptiform seizures, on the other hand, are a “software problem” characterised by dissociation or reduced arousal. From a patient perspective, the end result is the same though – your iPhone won’t turn on. Which sucks.
So, in a practical sense, what does all this mean?
Well for starters (as demonstrated by the paragraphs of preamble) – this is not an easy area of medicine. Not for us as clinicians, and certainly not for patients – 75% of whom actively resist the diagnosis. Even making the diagnosis is easier said than done. Definitively diagnosing PNES may require repeat examinations, expert epilepsy assessment, and video EEG. Importantly there is no single clinically pathognomonic feature of PNES. Frontal lobe seizures can present with bizarre semiology and mimic a lot of the “classic pseudo seizure signs.” And medial frontal, and amygalic epileptic foci are also not well detected on routine scalp EEG – so a “normal” video EEG may be insufficient.
How do I explain the diagnosis to patients?
When it comes to explaining the diagnosis, the following steps have been recommended
- Name the condition (EG: Functional seizures)
- State clearly that functional seizures are common, real, and treatable
- Empathically explain that you do not believe the patient is “crazy” or “making up their symptoms”
- Acknowledge the physical and emotional impacts functional attacks have on the patient
- Give specific examples from the patient that lead you to your diagnosis (EG: “you mentioned that you remembered what people were saying while you were seizing…”)
You can expect initial resistance to their diagnosis – and this is ok. Take time to pause, reflect on their concerns, and reiterate what you have said. Draw from common examples of the body’s physical response such as nausea before an exam. Be prepared for questions such as “what is the cause of my seizures” and practice explaining it in a way that doesn’t involve a lengthy blog, flow charts or a table of references. Use patient-centric education materials on functional seizures such as those found on www.neurosymptoms.org to reinforce what you’re saying.
What about a discharge plan?
Refer patients for an acute assessment by Neurology and/or Psychiatry. A 10-minute consult in a loud Emergency Department resuscitation bay is never going to work and will leave patients with that feeling that the initial communication was poor and “difficult to make sense of.” Patients with a new diagnosis of functional seizures will likely require repeated discussions about the diagnosis, as well as confirmatory investigations such as video EEG. They will need a comprehensive treatment plan involving Neurology, Psychiatry, and Physical Therapy. A poorly executed, rapid discharge will leave patients without a clear plan and perpetuates repeated presentations to the ED. Now you have that sorted you can go stop that intern from blindly intubating someone.
References and Further Reading:
- Health care practitioners’ perceptions of psychogenic nonepileptic seizures: A systematic review of qualitative and quantitative studies https://pubmed.ncbi.nlm.nih.gov/29750340/
- What patients say about living with psychogenic nonepileptic seizures: A systematic synthesis of qualitative studies https://pubmed.ncbi.nlm.nih.gov/27522576/
- Reuber, M. “Are non-epileptic seizures a manifestation of neurologic pathology.” Controversies in epilepsy and behaviour. New York: Elsevier (2008): 151-75.
- The bare essentials: Functional symptoms in neurology https://pubmed.ncbi.nlm.nih.gov/19448064/
- The Inpatient Assessment and Management of Motor Functional Neurological Disorders: An Interdisciplinary Perspective https://pubmed.ncbi.nlm.nih.gov/29628294/