Seizure 2022, Vol 95, Editor’s Choice: Seizure phobia: A distinct psychiatric disorder among people with epilepsy
Health-related quality of life (HRQoL) is often regarded as a “soft” outcome. It is sometimes considered the measure to turn to when outcomes “that really matter” don’t differ between one treatment and another. However, HRQoL measures how independently and well people are able to lead their lives, and in the context of epilepsy many studies have shown that “comorbid” symptoms such as those of anxiety and depression are much more closely related to patients’ quality of life than more directly seizure-related variables such as seizure frequency or severity (1).
My editor’s choice from the current issue of Seizure explores one particular comorbidity exclusively found in people with seizure disorders. This original research by Aviva Weiss et al. focuses on seizure phobia (2). One of the earliest descriptions of this condition may have been delivered by Tim Betts, the founding editor of this journal, who reported that some people with epilepsy may develop a “true phobic anxiety state” relating to their seizures, causing them to become “panic-stricken at the thought of going out in a public place lest they should have an attack”. However, he felt that this was much less common than more generalised anxiety (3). A phobia would be distinguished from less focussed anxieties by involving excessive fear triggered by a specific object or situation capable of provoking an immediate anxiety response in case of (real or imagined) exposure. Seizure phobia has been distinguished from other interictal anxiety disorders associated with epilepsy: anticipatory anxiety of epileptic seizures, epileptic social phobia, and epileptic panic disorder (4). All of these potentially disabling problems may be missed by clinicians, not least because patients typically realise that their fears are irrational and may therefore be ashamed of discussing them with a physician.
The first key finding of the study by Weiss et al. is that seizure phobia does not seem to be as rare as initially reported: although they often occurred in the context of more generalised anxiety disorders, phobic responses to seizure-related situations or triggers were reported by over one quarter of the 69 individuals with epilepsy who were questioned in detail about anxieties in the context of this study. People were at greater risk of having seizure phobia if they were female, had more anxiety symptoms in general, a history of major depressive episode or post-traumatic stress disorder. Over one third of the patients with epilepsy and seizure phobia also had psychogenic non-epileptic seizures – in some cases perhaps as a dissociative response provoked by seizure phobia. The fact that seizure phobia was unrelated to epilepsy-related variables supports the idea that the patients described as having seizure phobia were not exhibiting adaptive anxiety symptoms as an appropriate response to particularly dangerous or troublesome seizure disorders.
This study reminds clinician wishing to do what they can to improve the quality of life of their patients with epilepsy to be more aware of a treatable problem that may well be overlooked if no questions about patients’ fears in relation to their seizures are asked, especially about fears that seem ‘crazy’.
(1) Rawlings GH, Brown I, Reuber M. Predictors of health-related quality of life in patients with epilepsy and psychogenic nonepileptic seizures. Epilepsy Behav. 2017;68,153-58.
(2) Weiss A, Canetti L, David SD, Reuveni E, Ekstein D., Seizure phobia: a distinct psychiatric disorder among people with epilepsy. Seizure 2022; 95: 26-32.
(3) Betts, T.A. Epilepsy and the mental hospital. In: Epilepsy and Psychiatry (Eds E.H. Reynolds and M.R. Trimble). Edinburgh, Churchill-Livingstone, 1981.
(4) Hingray C, McGonigal A, Kotwas I, Micoulaud-Franchi JA. The Relationship Between Epilepsy and Anxiety Disorders. Curr Psychiatry Rep 2019; 29:40, doi: 10.1007/s11920-019-1029-9