Dr. LaFrance makes valid points, and I appreciate the opportunity to
respond to his important observations on PNES.
I agree that treatment is difficult and possibly not very effective.
However, PNES are by definition a psychiatric disease, so that if there is
failure it is in the psychiatric (not neurologic) treatments. Neurologists
should make the diagnosis, refer to psychiatry, and preferably continue to
follow these patients. The fact that 80% of PNES patients receive AEDs
before diagnosis [1] shows that neurologists in general do not have a high
enough index of suspicion for this diagnosis.
Where neurologists often fail is in the delivery of the diagnosis,
and I fully agree that unfortunately many patients are left without
direction. This may be an important reason for the overall unsatisfactory
treatment, and it should not be. There are well know caveats that warrants
caution when making a diagnosis of PNES, including the fact that some
“simple partial” seizures may be unassociated with surface EEG changes,
and that ictal EEG may be obscured by movement artifacts. However, in the
vast majority of patients, it is unequivocally clear with EEG-video
monitoring that the attacks are psychogenic. Yet many reports are written
in inconclusive language, simply stating facts like “an episode was
recorded with no EEG changes…” When episodes are clearly psychogenic in
origin, the report should so indicate, and clearly.
Similarly, making the diagnosis is only the beginning, and this only
helps if it is followed by clearly delivering the diagnosis to patients
and their families. This must be done honestly but with confidence. A poor
but common approach is to use wishy-washy conclusions (e.g., “these are
seizures but not epilepsy”), while carefully avoiding the notion that
these are psychogenic [2], or to give no diagnosis at all (“we can’t find
the cause…”). This leaves patients and families with the impression that
we cannot make a diagnosis, and that we do not know “what’s wrong.” We do
know. With the understanding that patients with PNES are usually not
faking, it should be possible for the clinician to present the diagnosis
to patients and family without being confrontational [3], and patient
education material can be useful in this regard. [4, 5]
Once the diagnosis is made, clinicians need to clearly state that
these are psychogenic and non-organic, using understandable layperson’s
terms like psychological, emotional, or stress-related. We know it, and we
should say it. With compassion, but also firmness and confidence.
References
1. Benbadis SR. How many patients with pseudoseizures receive
antiepileptic drugs prior to diagnosis? European Neurology 1999;41:14-115.
2. Benbadis SR. Activation by the power of suggestion. In: Burgess R,
Klem G, Luders H (eds). Fundamentals of EEG technology, second edition. In
press.
3. Shen W, Bowman ES, Markand ON. Presenting the diagnosis of
pseudoseizure. Neurology 1990;40:756-759.
4. Benbadis SR, Friedman AL, Kosalko J et al. Psychogenic seizures: a
guide for patients and families. Journal of Neuroscience Nursing
1994;6:306-308.
5. Benbadis SR, Stagno SJ. Psychogenic seizures: A guide for patients
and families. ©The Cleveland Clinic Educational Foundation and Department
of Scientific Publications, 1993.