Page 272 - ILAE_Lectures_2015

Chapter 27

Managing refractory epilepsy

RAJIV MOHANRAJ

Salford Royal Hospital NHS Foundation Trust, Salford

Refractory or drug resistant epilepsy develops in 20–30% of all patients diagnosed with
epilepsy. The ILAE has suggested that a person be considered to have refractory epilepsy if
they have failed to achieve sustained seizure freedom with two appropriate and tolerated
antiepileptic drug (AED) regimens1. Outcome studies have consistently shown response to
the first AED to be a strong predictor of long-term outcomes. In a series of patients with
newly diagnosed epilepsy in Glasgow, the response rate to the first, second and third AED
was 50.4, 10.7 and 2.7%, respectively2. A small proportion of patients may respond well to
further changes in treatment, but in the majority refractory epilepsy can be identified
relatively early in the course of the disorder.

Refractory epilepsy, as reflected in the title of this course, is a multifaceted disorder. Patients
not only suffer the physical consequences of seizures, but psychological, cognitive and
societal ones as well3. Patients with refractory epilepsy are less likely to acquire
qualifications, be employed or married, or live independently4. Management of this complex
disorder requires appreciation not only of its physical manifestations, but also the
psychological, psychiatric and societal aspects of the condition. This requires insights into
everything from the neuropharmacology of AEDs to the working of clinical commissioning
groups. This may sound challenging, but can make for a fulfilling and rewarding career.

This chapter aims to give an overview of a practical approach to managing refractory
epilepsy. Details of management of the various aspects of the condition may be found in other
chapters.

General principles of managing refractory epilepsy

1. Review the diagnosis and classification
2. Review AEDs currently and previously used
3. Consider non-pharmacological treatments
4. Address co-morbidities and lifestyle issues
5. Optimise quality of life.

Reviewing diagnosis – living with uncertainty

A significant proportion of patients who are said to have refractory epilepsy do not have
epilepsy5. Therefore, when AEDs fail to achieve seizure control, it is essential that the
diagnosis is reviewed. It is often difficult from descriptions alone to be certain as to whether
seizures are epileptic or non-epileptic. Diagnostic uncertainty is one of the major challenges
a clinician has to face in managing patients presenting with apparent drug-resistant epilepsy.
Psychogenic non-epileptic attacks are the main alternative possibility in this situation.
Epileptic seizures are thought to co-exist with non epileptic seizures in 15–50% of cases6,7.
The mainstay of diagnosis remains a detailed history. The clinician should aim to recreate the
episode in as much detail as possible, both from the patient’s perspective, and that of an
eyewitness. Conversation analysis has identified differences in the way non-epileptic attack