Dr Gillian Fortune Senior Clinical Neuropsychologist Beaumont Hospital Non Epileptic Seizures and Treatment

1. Dr Gillian Fortune Senior Clinical Neuropsychologist Beaumont Hospital Non Epileptic Seizures and Treatment

2. Non-Epileptic Seizures: some definitions • Liske et al., 1964: “paroxysmal episodes of altered behaviour resembling epileptic attacks but devoid of characteristic epileptic clinical and electrographic features” • Betts (1991): “a sudden disruptive change in a person’s behaviour which is usually time-limited, and which resembles, or is mistaken for, epilepsy, but which does not have the characteristic electrophysiological changes in the brain detectable by EEG, which accompanies a true epileptic seizure”. • Coined term Non-Epileptic Attack Disorder (NEAD) • Other terms: pseudoseizures; pseudoepilepsy; functional attacks; psychogenic seizures; hysterical seizures – now considered pejorative

3. NEAD: Categories & Comorbidity • ORGANIC NEAD: Cardiovascular; Cerebrovascular; Migraine (espec. Basilar); Alcohol-related; Post-anaesthetic; Pre-eclampsia • PSYCHOGENIC NEAD: Conversion Disorder • ICD-10 (under Dissociative Disorders) • DSM-IV (under Somatoform Disorders) • 300.11 Conversion Disorder with Seizures or Convulsions • Psychiatric Disorder Associated with NEAs • Depression 25-60% • Anxiety disorders 12-50% • Personality disorder 30-60% • Other Conversion disorder 30-80% • e.g. numbness, weakness, blindness, fainting, paralysis • Alper et al (95) • 25% of NEAs accounted for by Panic disorder, psychosis, ADHD, depersonalisation disorder

4. NEAD: Models/Theoretical Perspectives • Stress Model of Conversion • Individual is exposed to a challenging event • Primary appraisal of demands of the event • Secondary appraisal of own resources for adjustment • Coping strategy is initiated • Outcomes then follow such as a change in the situation, health, mood or behaviour of the individual • Conversion as an avoidance mechanism to cope with stress that is perceived to be overwhelming • Several studies confirm that conversion patients use more escape-avoidance strategies and express a greater belief in external control over health than matched controls

5. NEAD: Models/Theoretical Perspectives • A Cognitive-Behavioural Model of NEAs (McMackin, 2000) • Proposes that patients with NEAs have specific belief systems regarding inhibiting expression of emotion as a result of their childhood experiences • This means that they cannot deal with intense emotional experiences and develop physical symptoms in the form of seizures • Borne out using measures of alexithymia (the awareness of one’s emotional state) • Model tested in recent study (Dineen et al., in press)

6. NEAD: Models/Theoretical Perspectives • Pilot Study of CBT in NEAs (Goldstein et al., 2005) • N=20 (16f, 4m) • >2 NEAs per month • No assoc. epilepsy • IQ>70 • 14 sessions CBT, 6 month follow-up • 16 completed treatment protocol • n=4 (25%) NEA-free for 6 months following treatment • n=13 (81%) showed 50% reduction in NEA frequency • RCT currently underway comparing CBT to standard care

7. NEAD: Aetiology/Risk factors • May be more likely in people with a history of neurological/other physical disease • Can follow epilepsy surgery (Glosser et al. 1999) • 10-37% of patients with epilepsy may also have NEAs • Scheepers et al. (94) N=27 • Brain Injury (33%), Psychiatric Hx (59%), CSA (41%) • Buchanan et al. (93) N=32 • Situational Factors (34%), “attention-seeking” (34%), CSA (12%), Parental overdependence (9%), School avoidance (6%), Drug abuse (6%) • Riaz et al. (98) N=15 • Family history of psychiatric problems or epilepsy (33%), Abuse history (40%), Life Events at Onset (33%) • More will be learnt about people with NEAs if they are no longer studied as a homogenous group with identical aetiology for their similar manifestations

8. NEAD: Epidemiology • True statistical prevalence unknown • Gates (2000) NEAD patients account for 20% of tertiary care epilepsy unit admissions in US and Europe • Conservative estimate = 1 in 4 being investigated with label of epilepsy • Beaumont Electronic Monitoring Unit Admissions 2007 • 98 patients monitored • 19 patients (20%) diagnosed with NEAD • 2 of the 19 patients diagnosed with NEAD had a history of epilepsy • Adults: Male : Female ratio of 1:4 • Children: Male : Female ratio of 1:2 • Under 10 years of age 1:1

9. NEAD: Epidemiology • Age at onset usually <40 years • Average age at onset is 23 years • Effects on Quality of Life similar to those of drug resistant epilepsy • Seizure control is of primary importance in managing patients with seizures, whether they are of epileptic or NON-epileptic origin • Uncontrolled seizures can be associated with intellectual, social, vocational and emotional problems • Economic & Health Service costs are likely to be substantial

10. NEAD: Differential Diagnosis • Diagnosis: No universally accepted criteria • Desai et al. (1981): 4 criteria: • Normal EEG during • And after the seizure behaviour (beware of false +ves & -ves!) • Seizure frequency that is unrelated to anticonvulsant drug treatment • Occurrence of bizarre behaviours during the seizure that are not consistent with those of true seizures • Although clinical features are helpful, none are specific or confirmatory – essential to consider the entire symptom picture and sequence of events

11. NEAD: Differential Diagnosis

12. NEAD: Differential Diagnosis • Gold standard= video telemetry • Other methods used/Provocative tests – reliability questionable: • saline injections • although patients with epilepsy usually are not inducible, Williams et al. (94) reported 3 of 40 patients with diagnosed NEAD and 3 of 20 patients with diagnosed Epilepsy had atypical episodes induced by IV saline – 2 of the patients with Epilepsy had their typical epileptic seizures induced by placebo • post-ictal prolactin levels (Serum prolactin increases at the onset of an EA, peaks at 15-30 mins and declines to baseline by 60 mins after the seizure) BUT other factors e.g. antipsychotics can also increase. Occurrence of false +ves & false –ves espec. in CPS/SPS limiting • hypnosis/suggestion; • AED withdrawal; • observation of clinical features

13. NEAD: Differential Diagnosis • Recording a spontaneous or induced NEA does not exclude co-existing Epileptic seizures • Ethical considerations: Provocative tests espec. IV infusions raise ethical issues in relation to informed consent & may also compromise patient-physician relationships leaving patients feeling deceived and unwilling to accept subsequent psychological treatment • Diagnosis of exclusion – especially problematic when NEAs often co-exist with neurogenic seizures • Most common pattern is a patient with epilepsy who subsequently develops NEAD • Patients with Neurological disorder are at increased risk of conversion disorder • 10-45% of patients with NEAD have a history of current/past epilepsy

14. NEAD: Differential Diagnosis • The differential diagnosis of Frontal Lobe complex partial seizures (FLCPS) is often more challenging due to the: • often bizarre presentation of these seizures • tendency of EEG to show no interictal epileptiform abnormalities • & the ictal EEG pattern may be obscured by artifacts generated by vigorous ictal motor activity not unlike the EEG findings in NEAs

15. NEAD: Distinguishing Features of Frontal Lobe Complex Partial Seizures

16. NEAD: Prognosis • Very few reviews! • Scheepers et al. (94) N=22 • 55% +ve reaction to diagnosis of NEAD, 45% -ve • Riaz et al. (98) N=15 • 25% seizure free • 40% reduction in frequency • 25% +ve reaction to diagnosis & 75% -ve reaction • 53% +ve reaction to psychological treatment received & 47% -ve reaction to psychological treatment received • Selwa et al. (2000) • Overall remission rate of 40% • Recent onset (<1 year) more likely to have remission after diagnosis

17. NEAD: Management & Treatment • Imparting the diagnosis of NEAD is the first step to successful treatment • No doubt must remain over diagnosis since this is easily communicated to the patient and will undermine treatment • “Good news” – not a reflection of brain damage or abnormality • BUT Patients diagnosed with conversion symptoms are often confused, embarrassed and/or frightened by the new diagnosis • Person will have most likely have to cope with the loss of a previous diagnosis of epilepsy, withdrawal of AEDs, explanation to family etc • New diagnosis must lead into psychological treatment ideally within the same service • Newly diagnosed patients typically seen for initial consultation on Beaumont EMU to introduce psychological treatment, assess suitability for treatment type, refer locally for treatment where possible, initial psychoeducation with patient and family • Currently compiling a patient/relative booklet to take home from hospital incorporating a NEA diary • Flexible approach to treatment as responses to diagnosis will vary – psychological treatment may be presented as a no-lose experiment – engagement may take longer than other patient groups

18. NEAD: Management & Treatment • Can be useful to think of initial psychological management in terms of Explaining, Exploring & Treating • It is essential to explain the diagnosis in ways that educate the patient, provide a cognitive framework of understanding, reduce shame and motivate willingness to undertake treatment • Use of metaphors can help a patient feel less helpless and controlled by the symptoms e.g. emotional stresses likened to steam in a pressure cooker with NEAs acting as a safety valve • Power of suggestion: NEA may reduce in frequency or resolve following diagnosis (more likely with recent onset) • Can be useful to include relatives in the initial meeting so that a shared understanding can be reached; this also allows the observation of any contributory family dynamics

19. NEAD: Management & Treatment • Weekly NEAD therapy clinic • 3 x 1 hr out-patient CBT treatment sessions • Past 5 months additional NEAD “screening clinic” • 3 x 1 hr out-patient assessment appointments • Re-screening waiting list of 43 patients with diagnosed NEAD • Using standardised measures & screening checklist • BDI • BAI • DES-II • TAS-20 • Recent diagnosis patients booked for 6 week follow-up post discharge • Outcomes • Discharge with patient/GP to re-refer if necessary • Routine review in 3/6/12 months • Refer to local services where appropriate • Prioritise for CBT in-house

20. NEAD: Management & Treatment • Fuller psychological assessment of all types of NEAs and wider issues must follow neurological diagnosis ASAP • This facilitates an individual patient formulation to design appropriate treatment • Assessment usually involves keeping a NEA diary to form a baseline for treatment • Standardised measures of mood and emotional style • Multi-factorial Model for Understanding NEAs • Predisposing factors • Family history, personality factors, childhood trauma, cultural factors • Precipitating factors • Life events, lack of social support, “an intolerable situation” • Perpetuating factors • Cognitive, Behavioural, Social

21. NEAD: Management & Treatment • Treatment of comorbid conditions essential e.g. depression, anxiety • May require multidisciplinary input • Neuropsychiatry • Social Work • Treatment goals prioritised by therapist & patient • Perpetuating factors most easily targeted with quick success

22. Preliminary Audit Data of New NEAD Screening Clinic

23. NEAD: Case MB • 43 year-old married female, 4 grown children living at home, homemaker, normal intellectual ability • 8 week history of NEA upon admission and diagnosis with video telemetry • Multidisciplinary assessment • Multiple NEAs per day lasting up to 30 minutes • Loss of awareness during attacks with thrashing of all limbs, incontinence, injury • No obvious immediate precipitating factors • History of major depressive episodes • 18-month history of panic attacks with agoraphobia • Neuropsychiatric diagnosis of current major depressive episode (with suicidal ideation), panic disorder with agoraphobia & conversion disorder with seizures • Revision of antidepressant therapy with out-patient neuropsychiatric review • Psychological intervention with psychoeducation with husband commenced during IP stay • Early intervention with CBT within 3 weeks • Baseline diary within 3 week intervening period showed immediate reduction in frequency of attacks by approx one third but no change in severity • Husband attended initial out-patient CBT assessment session

24. NEAD: Case MB • Initial Psychological Formulation • Precipitating Factors • Daughter was raped – blames self for daughter leaving home…. • Husband revealed hx of CSA and suffers with depression • Loss of contact with husband’s family • Loss of contact with own family due to daughter’s rape • Best friend died from cancer • Predisposing Factors • Inclined to minimise effects of LEs • No emotional outlets for difficult emotions • Mother discouraged expression of emotion in childhood – style carried forward to own family • Overinflated sense of responsibility towards others emotions • Perfectionism • Perpetuating Factors • Misinterpreation of bodily symptoms resulting in panic attacks

25. NEAD: Case MB • Perpetuating Factors • Misinterpretation of bodily symptoms resulting in panic attacks/NEAs • Avoidance of leaving house without husband • Loss of pleasurable activities • Negative Automatic Thoughts • Self, Symptoms, World, Future • Protective Factors • Motivated to get better • Family Support • Multidisciplinary support

26. NEAD: Case MB • Initial Treatment Plan • Written contract & management plan for suicidality • Diary to monitor NEAs, identify triggers & record thoughts & feelings • Activity scheduling to target low mood • Sleep hygiene plan • Brief weekly CBT sessions to manage overwhelmed emotional state and consequential increased suicidality • Gradual ‘safe’ discussion of precipitating life events in therapy • Development of emotional outlets for daily events • Diary • Practising conveying emotions to family – behavioural experiments

27. NEAD: Case MB • Progress to Date • 12 sessions of CBT • Mood stable • Reduced to ‘mild’ range of depression from ‘severe’ • No suicidal ideation, reports feeling “safe” • Able to leave house without husband • Consistent schedule of activities • General health, sleep & appetite improved • Changes in family situation • Husband attending counselling • Children more independent • NEAs reduced to 1 every 6 weeks • Able to identify triggers and usually prevent using distraction followed by appropriate coping strategies • Longer term treatment plan • Further address underlying predisposing personality factors • Ongoing relapse prevention work • Further improvement of mood, management of ongoing NEAs

28. NEAD: Treatment Challenges • Learning Disability requires further modification of treatment approach • Treatment models assume that a person wants to gain control over their seizures • Denial of stresses or unexpressed emotions • Seizure substitution is common with other conversion symptoms developing • Relapse is common • Delays in diagnosis due to waiting lists for video telemetry leading to chronicity and treatment resistance • Few experienced practitioners treating NEAD • Lack of Professionals knowledge about NEAD unable to support/provision of conflicting information during psychological treatment • Loss of Disability Allowances due to change in diagnosis • Stigma & paucity of patient information

29. NEAD: Questions