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Patients often express a fear that they are ‘mad’ and are reassured to hear how common the
problem is and that it is treatable. In trying to answer the question ‘what causes the seizures?’
a helpful approach is to describe the known demographic and aetiological factors as they
apply to that individual, together with a speculative model of how this might be related to
dissociation. For example, one might explain: ‘We don’t fully understand what causes this
disorder but two-thirds of people with it have suffered the sort of traumatic experiences you
have described. We can’t explain the link for certain, but it may be that when people are
exposed to repeated frightening incidents as a child they learn to switch off. Initially this is a
helpful thing for them to do, it protects them emotionally at the time. But it may come back
later in life as these seizures.’ It is important not to suggest abuse as a possible aetiological
factor if this history has not emerged spontaneously for fear of encouraging ‘false memories’.

A description of maintaining factors is especially useful when other aetiological factors are
not apparent. Patients will often recognise that their confusion about the nature of the
seizures, avoidance of situations in which they fear having one, and the protective reactions
of carers together create a ‘vicious circle’ whereby fear of having attacks may eventually
become the most important ‘cause’ of them. A few patients clearly identify stress as a trigger
for individual attacks but most do not. This can be a very difficult issue. It may be helpful to
explain that many patients are initially unable to identify triggers for their attacks but that
these often become apparent with treatment. Further, that when triggers are found they often
turn out to be fleeting stressful or unpleasant thoughts that the patient was barely aware of (or
could not easily remember) that have little to do with their immediate circumstances. It may
be useful to explain that we all think at many different levels at any one time and some of
what we are thinking about is instantly forgotten. By way of illustration, asked to introspect
for a moment, most patients will acknowledge that they have been thinking of other things
while listening to the doctor’s explanations. Examples of the link between physical symptoms
and emotional state, and of the complex automatic behavioural accompaniments to emotions
(as seen with grief or with rage) may help illustrate some of the physical attributes of seizures.

Finally, in describing treatment and prognosis it is worthwhile emphasising that simply
understanding the nature of the problem and withdrawing AEDs is all that is required for
some patients53. For those who have DS alone the news that they may come off antiepileptic
medication is usually very welcome. It is important, however, to caution against abrupt
withdrawal. Guidelines for AED withdrawal have been published by Oto and colleagues70.

Information about DS is available online through two comprehensive and carefully devised
websites written by neurologists for patients.

The first of these, www.neurosymptoms.org also covers functional neurological symptoms
in general. The second, www.nonepilepticattacks.info includes specific self-help guidance
for people with DS. Both are extremely useful resources.

Patients who have comorbid epilepsy often pose the most difficult management problems.
Where both types of seizures are ongoing the main challenge will be to clearly identify, with
the patient and carers, the different seizure types: residual uncertainty may undermine
psychological treatment and lead to over-medication in order to ‘play safe’. Showing patients
and carers videos of seizures captured in telemetry is useful but the semiology frequently
changes and the issue often requires regular review. In this situation home videos of seizures
may help to avoid repeating vEEG telemetry.

Treatment

Pharmacotherapy is clearly appropriate for the relatively small proportion of patients with
significant psychiatric comorbidity. Even in those patients without a comorbid psychiatric