Nocebo Hypothesis Cognitive Behavioural Therapy (NH-CBT) for non-epileptic seizures

As the delivery of a non-epileptic seizure (NES) diagnosis has been demonstrated to lead to full remission of seizures in a substantial minority of people with NES in previous studies (e.g. 14%), participants will be informed of this, and told to contact the lead investigator only if they experience further any seizure activity post-diagnosis delivery. If they do contact the lead investigator, eligible participants will then undergo baseline assessment by an independent assessor (research assistant), and asked to start a seizure diary (the format of this will be negotiated with the lead investigator on an individual basis, i.e. paper vs text or phone reporting). As soon as is pragmatically possible after this baseline assessment, they will then receive the first session of Nocebo-Hypothesis Cognitive Behavioural Therapy (NH-CBT) for NES. All therapeutic intervention throughout the study will be delivered by the lead investigator, a clinical psychologist with 26 years clinical experience. This will involve around 90 minutes of psychological assessment, education and treatment (dependent on the participant’s existing knowledge) including the following components: gathering information about participants’ medical history, the onset and course of the seizures, the participant’s understanding of the medical evidence, their personal belief about the causes of their symptoms, and their understanding of the terms ‘subconscious’ and ‘placebo effect’. A psychological formulation is then shared with the participant that incorporates relevant history within a hypothesis that the seizures are caused by a nocebo effect. The aim is to engender in the participant an alternative belief about their symptoms, to challenge the one currently held (e.g. “the doctors have missed something”, “there’s something wrong with my brain”). The treatment will then be paused, and only continued if / when the participant experiences another seizure. The next session will start by assessing the participants’ belief in the “nocebo hypothesis” versus their belief in their originally held view (usually that they have a neurological condition, e.g. epilepsy). If the originally held view is still considered more likely than the “nocebo hypothesis”, then evidence for and against this is discussed. Once the nocebo hypothesis is seen as at least equally more likely than any other cause by the participant, a graded exposure hierarchy is made in collaboration with the participant, where antecedents that the person believes could trigger their seizures are subjectively ranked from ‘most likely’ to ‘least likely’. The person then gradually exposes themselves to those triggers (starting with least likely), having previously been taught some techniques that may help prevent seizures (e.g. distraction, grounding). The lack of subsequent seizure is discussed as further evidence that they do not have epilepsy, that the perceived trigger is not harmful, and that perhaps a subconscious belief was indeed responsible for previous seizures. Throughout treatment, the therapist will intentionally portray as much optimism as possible to the participant about potential recovery, e.g. talking about how many people have got rid of their seizures using NH-CBT. Participants will receive therapy over a period of up to 12 weeks, with the frequency of therapy being guided by the frequency of the seizures (e.g. if the seizure frequency is severe enough to warrant inpatient treatment, then therapy may take place for approximately two hours a day). Total time spent in therapy sessions will be monitored. Therapy will cease when the participant has no perceived triggers that they have not been repeatedly exposed to. If therapy ceases early, and there is a recurrent seizure before the 12 week treatment period is complete, then therapy will reconvene, exposing the person to whatever preceded that most recent seizure, in a graduated fashion whenever possible. Participants will also receive written information about their diagnosis and treatment, outlining the “nocebo hypothesis” regarding non-epileptic seizures, including information about the concept of subconscious processing and the placebo/nocebo effect. There will also be clear description of the treatment. Treatment will predominantly take place at the ISIS Rehabilitation Centre, Wakari Hospital, Dunedin, although there may sometimes be some home and community-based intervention, depending on the participant's perceived triggers.