Treatments for adults with PNES

1. Treatments for adults with PNES Lorna Myers, Ph.D.

2. Functional Neurological disorder (FND) • Functional Neurological Disorder (FND) is an umbrella term for a variety of symptoms that appear to be neurological but for which there is a suspected psychological origin. • Symptoms: bladder and bowel problems, chronic pain, gait & balance issues, headaches, seizures, involuntary movements, paralysis & weakness, sensory issues, speech and visual problems. • PNES is now included under this umbrella term (although it differs considerably from some typical FND disorders).

3. Definitions of PNES • As per DSM 5, PNESs are classified as a conversion disorder or functional neurological (abnormal central nervous system functioning of unknown etiology) symptoms disorder (FND). • A. 1 or more symptoms of altered voluntary motor or sensory functions • B. Clinical findings  symptoms incompatible with medical/mental disorder • C. Symptom of deficit is not better explained by another med/mental disorder. • D. causes sig. distress or impairment in social, occupational or other important areas of life. • F44.5 with attacks or seizures

4. Definitions • Seizures: Involuntary behavioral changes (movements of body parts, alteration of consciousness, loss of certain functions (i.e. speech, vision)-generalized, partial, etc. • Epilepsy: this diagnosis is given after a person has more than 1 seizure and the seizures are unprovoked (e.g. drug or alcohol induced). It is associated with abnormal electrical activity in the brain. • PNES: Behaviorally, resemble an epileptic seizure but there are no epileptiform signs on EEG.

5. What is the mechanism behind PNES? • PNES is not a single entity but rather a diagnosis given due to the presence of seizures • But it is associated to many other psychiatric conditions • In sum, PNES is a dissociative response to distress that has become the go-to coping mechanism

6. PNES risk factors • History of traumatic or adverse life experiences (including significant health events as well as physical, sexual, emotional abuse, major losses, etc.) • History of psychiatric disorders, including depression, anxiety, post-traumatic stress disorder and personality disorders • History of medically unexplained symptoms

7. Main associated Psychiatric conditions • Depression • Anxiety • Post traumatic stress disorder (PTSD) • Dissociative disorders • Personality disorders • Pain syndromes and Medically unexplained symptoms (MUSs)

8. Alexithymia • Alexithymia: inability to “read” your own emotions. Difficulty “identifying” and “describing” your own emotions. • Over 30% of patients with PNES fulfill criteria for alexithymia. Even higher among those with PNES and PTSD. • Most patients with PNES have a strong tendency to SUPPRESS emotions.

9. Stress coping strategies • Stress coping strategies: • * Emotion-focused (e.g. cry, get upset, get angry) • * Task oriented (e.g. focus on the problem and see how well I can solve it) • * Avoidance oriented (e.g. go out shopping, go to sleep, watch a movie) • Over 30% of a PNES sample used ineffective stress coping strategies (emotion). • Men with PNES tend towards avoidance coping. • Myers L, et al. (2013). Stress coping strategies in patients with psychogenic non-epileptic seizures and how they relate to trauma symptoms, alexithymia, anger and mood. Seizure,  634–639.

10. Treatment targets • All treatments regardless of theoretical orientation will be targeting: • Alexithymia (increasing awareness of emotions which necessarily requires not suppressing the emotions) • Stress coping: increase efficient stress coping (task oriented) and decrease emotion and avoidance. Avoidance strategies can go hand in hand with suppression of emotions.

11. Treating PNES • Until recently there was no treatment designed specifically for PNES. There are several treatment options now available. • If we consider all possible psychological treatments available, elimination of seizures or significant reduction in numbers has been reported in about a 1/4 to over half of cases. • Note: not all treatments are helpful to all. Some of the short term treatments may not be sufficient for those with severe psychological disorders, complex trauma, and certain personality disorders.

12. Treating PNES First step: the conversation the patient has with her/his neurologist, diagnostic team before being discharged from the hospital. Thorough and clear explanation about PNES: what it is, what is known about its origins, how it fits with the patient and how it can be treated. Ideally, the patient leaves the hospital with a psychological referral in hand.

13. Treating pnes • PSYCHOTHERAPY should start once a diagnosis of PNES has been made • There is empirical validation and reports of utility of the following treatment approaches: • Cognitive Behavioral Therapy (CBT) * • Prolonged exposure for therapy for dually diagnosed PNES/PTSD • Psychodynamic therapy • Mindfulness-based therapy • Psychoeducational group interventions

14. Cognitive behavioral therapy (CBT) • PNES is seen as a cluster of physical symptoms that are maintained by maladaptive thoughts and emotions and behaviors. • Thought: If I get angry, I will explode and hurt someone. Behavior: don’t stand up for myself • Result: increasing anger, frustration, distress  seizure • Thought: We could have died in that car accident! • Emotion: terror • Behavior: push that thought and emotion out of your mind • Result: unprocessed memory leaves fragmented emotions and thoughts seizure

15. Cognitive Behavioral Treatments (CBT) for PNES • Sessions for CBT-ip with PNES: 1) Making the decision to begin taking control, 2) Getting support, 3) deciding about your drug therapy, 4) learning to observe your triggers, 5) channeling negative emotions into productive outlets, 6) relaxation training, 7) identifying your pre-seizure aura, 8) dealing with external life stresses, 9) dealing with internal issues and conflicts, 10) enhancing personal wellness, 11) other symptoms associated with seizures, 12) taking control: an ongoing process. • LaFrance C and Wincze JP (2015). Treating non-epileptic seizures-therapist guide. Oxford University Press.

16. Cognitive Behavioral Treatments (CBT) for PNES • LaFrance et al: multi-center pilot randomized study on 34 patients randomized into 1 of 4 treatment arms: 1) flexible dose sertraline hydrochloride only (n=9), 2) cognitive behavioral informed psychotherapy (CBT-ip) (n=9), 3) CBT-ip with sertraline (n=9)4) treatment as usual (n=7) • CBT-ip group: 51.4% reduction in seizure frequency (p=.01) and improved on depression, anxiety, QOL and global functioning. • CBT-ip + sertraline: significant reduction (59.3%) in seizures (p=.008) and improvement on global functioning (p=.007). • LaFrance et al. (2014) Multicenter pilot treatment trial for psychogenic nonepileptic seizures: a randomized clinical trial. JAMA Psych 71(9):997-1005.

17. CBT-ip follow-up data • In 21 patients, seizure reduction was maintained over 1 year in patients who did not have personality disorders (57.1% had PD). • Those without a PD diagnosis reported significant reduction in their seizures. Disability status also reduced over a 1 year period. • Symptom substitution did not occur. AES 2015 Poster 3.237|B.01 One year follow-up of cognitive behavioral therapy-informed psychotherapy treatment trial for psychogenic non-epileptic seizures. W C. LaFrance, Rebecca Ranieri, G Baird, Andrew Blum, Gabor I. Keitner

18. CBT treatments for PNES/PTSD-Prolonged exposure (PE) • PE is a highly efficacious treatment for post-traumatic stress disorder (PTSD) developed by Edna Foa. • If 25-100% of patients with PNES have PTSD, it makes sense to treat these patients with PE. • Our goal at NEREG: treat the PTSD symptoms and the associated psychogenic seizures will subsequently improve too.

19. PTSD • Avoidance behaviors (reminders of trauma, places, people, activities, thoughts, anything that might be a reminder, emotional numbing). • Intrusive symptoms (nightmares, flashbacks, thoughts that appear without you voluntarily calling them up) • Hypervigilance (constant alertness, scanning for danger, inability to relax, to sleep, to rest) • Negative thoughts and mood (e.g. “I’m weak for having this, my life has been destroyed, there is no hope for me”)

20. PE rationale • The core components of exposure therapy are to replace avoidance with exposure and confrontation: • Imaginal exposure, revisiting the traumatic memory, repeated recounting it aloud, and processing the experience of memory recollection, and • In vivo exposure, the repeated confrontation with situations and objects that have become associated to the trauma and cause distress but are not inherently dangerous.

21. CBT treatments for PNES/PTSD-Prolonged exposure (PE) • Prolonged exposure acts on: • Avoidance symptoms (of the memory and other life aspects). Patient reconquers that which was avoided. • Intrusive symptoms because the patient learns to recollect the memory and associated thoughts voluntarily instead of being “intruded on.” • Hypervigilance because the patient learns that many “dangerous” situations are in fact safe and because intrusive symptoms come down. • Negative thoughts and mood because there is a sense of achievement and regained confidence.

22. PTSD and PNES

23. PE for PTSD/PNES • 18 subjects enrolled • 16 (88.8%) completed the course of treatment. • 13/16 (81.25%) therapy completers reported no seizures by their final PE session, and the other three reported a decline in seizure frequency (Z = − 3.233, p = 0.001). • Significant reduction of mean depression (M = − 13.56, SD = 12.27; t (15) = − 4.420, p < 0,001) and PTSD symptoms (M = − 17.1875, SD = 13.01; t (15) = − 5.281, p < 0.001) from baseline. • Longitudinal seizure follow up in 14 patients revealed that gains made on the final session were maintained at follow-up (Z = − 1.069 p = 0.285). Myers L, et al (2017). Prolonged exposure therapy for the treatment of patients diagnosed with psychogenic non-epileptic seizures (PNES) and post-traumatic stress disorder (PTSD). Epilepsy Behav, 2017

24. PE for PTSD/PNES • Case study: 53 year old man with PNES for 7 years (up to 15 seizures per day). • Underwent treatment for PTSD/PNES with PE. No seizures at end of treatment. • 2-year follow up: 3 seizures in all. Clearly identifies triggers for these. • Myers L & Zandberg L (in press). Case Report: Prolonged Exposure Therapy for comorbid psychogenic non-epileptic seizures (PNES) and post-traumatic stress disorder (PTSD). Clinical Case Studies.

25. Important Consideration for pe • It may not be possible to use PE with patients who have complex PTSD and PNES, especially if it is not possible to identify an index trauma. • Complex PTSD involves a set of symptoms resulting from prolonged trauma that was not possible to escape. Examples: • Chronic abuse by caregivers • Hostages • Prisoners of war • Concentration camp survivors • Survivors of some religious cults

26. EMDR • Report on EMDR targeting trauma and dissociative symptoms in 3 patients, Psychogenic seizures stopped in two. Those patients remained seizure-free for 12–18 months. Kelley & Benbadis (2007). Eye movement desensitization and reprocessing in the psychological treatment of trauma-based psychogenic non-epileptic seizures. Clin. Psychol. & Psychotherapy.

27. Psychodynamic therapy for PNES • Psychodynamic therapy understands psychogenic symptoms as produced by internal processes resulting from traumatic memories (often from childhood) and emotional conflicts that are maintained at an unconscious level through dissociative, conversion, and somatic defense mechanisms. • The goal of psychodynamic therapy is to bring unconscious material to the surface to promote change through insight.

28. Psychodynamic therapy for PNES • Oliveira et al: 37 patients were treated with weekly sessions of psychodynamic treatment for 12 months. 29.7% stopped having psychogenic seizures and 51.4% had a decline in seizure frequency. • Need follow up data on maintenance of improvements • Mayor et al: augmented psychodynamic interpersonal therapy (PIT): 2-hour semi-structured initial interview and up to 19 50-minute weekly or biweekly sessions. 47 patients completed follow-up: 25.5% seizure-free, 40.4% had a >50% reduction in frequency/baseline. • Santos NdO, Benute GRG, Santiago A, Marchiori PE, Lucia MCSd. Psychogenic non-epileptic seizures and psychoanalytical treatment: results. Revista da AssociaçãoMédicaBrasileira. 2014;60(6):577-84. • Mayor R, Howlett S, Grünewald R, Reuber M. Long‐term outcome of brief augmented psychodynamic interpersonal therapy for psychogenic nonepileptic seizures: Seizure control and health care utilization. Epilepsia. 2010;51(7):1169-76.

29. Mindfulness-based treatments for PNES • Mindfulness involves being aware moment-to-moment of subjective conscious experiences. Mindfulness involves being aware moment-to-moment of subjective conscious experiences. • Regular practice of meditative practices improve attention and emotional regulation as well as body awareness; all of these are key targets in a disorder such as PNES. • Promising results are coming soon • Baslet et al (2015) Treatment of psychogenic nonepileptic seizures: updated review and findings from a mindfulness-based intervention case series. Clin. EEG Neuroscience.

30. Psychoeducational groups for PNES • Zaroff et. al. (2004) psychoeducational group with 7 patients for 10 sessions. Topics: education about PNES, anxiety, depression, trauma, anger and assertiveness and healthy behaviors (diet, sleep, exercise). PTSD and dissociative symptoms and emotion-based coping strategies improved. • Seizure frequency did not change significantly. • Zaroff CM, Myers L, Barr WB, Luciano D, Devinsky O. Group psychoeducation as treatment for psychological nonepileptic seizures. Epilepsy Behav. 2004;5(4):587-92.

31. Treatments for PNES-Psychoeducational group • Chen et al (2014) compared 34 patients who received 3 monthly psychoeducational meetings and a routine seizure clinic follow-up control group (n=30). • No significant change in seizure frequency/intensity • Significant improvement on work and social adjustment • Trend toward decreased emergency department visits or hospitalizations. • Chen DK, Maheshwari A, Franks R, Trolley GC, Robinson JS, Hrachovy RA. Brief group psychoeducation for psychogenic nonepileptic seizures: A neurologist‐initiated program in an epilepsy center. Epilepsia. 2014;55(1):156-66.

32. Making the first appointment for therapy • If the psychotherapist you are calling is not a specialist in PNES, preferable to explain to them on the phone that you have: “conversion disorder,” a “type of dissociative disorder,” or a “stress disorder.” • Carry in with you to the first appointment a print out that explains what PNES is: http://nonepilepticseizures.com/downloads/PNES%20information%20sheet%20and%20resources%20for%20website.pdf • You can refer them to a webinar for psychotherapists: http://nonepilepticseizures.com/epilepsy-psychogenic-NES-events-news-webinars4.php

33. How to help your therapist • At the outset of treatment give a description of your typical seizures and their frequency • Aura? • How do they start? • What are their characteristics? Is there a risk you might fall? Do you vocalize, thrash, shake, is hearing, speech or writing retained during episode, duration? • Is there something that you find helps during the episode? • How long to recover?

34. How to help your therapist • Have an understanding with the therapist of where you can be touched to avoid injury and to provide grounding. • Is there a part of the body that cannot be touched? • Feel free to teach your therapist about your disorder

35. Recommendations for psychotherapists • Ensure patient is safe from injuries by making necessary modifications to office during these sessions • Does session need to be conducted on a carpeted floor? • Is there wooden or hard furniture that needs to be moved out of the way? • Is a pillow needed?

36. Recommendations for psychotherapists • Teach a breathing retraining exercise early on and make sure it is practiced and learned. • Process what happened as soon as seizure ends and patient can speak. It is not necessary to stop a session just because of a seizure if the patient can continue. Assess if patient can continue with distressing topics (e.g. exposure) or if it is better to move on to processing.

37. Recommendations for psychotherapists • Do not leave patient alone or allow to leave office until they are recovered • If you have an exam room, patient may remain there resting or may remain in a waiting room • Ask office staff to monitor if you are in with another patient. • Make sure you have someone who can accompany patient home if needed (make sure you have emergency contact numbers from outset). • Unless the patient hurt her/himself during episode (e.g. fell), episode is notably different than typical episodes, is not responsive, lasts longer than 1 hour, avoid calling 911.

38. Professional Resources • Review Paper: Gaston Baslet, Ashok Seshadri, Adriana Bermeo-Ovalle, Kim Willment, Lorna Myers. Psychogenic Non-Epileptic Seizures: An Updated Primer (2016). Psychosomatics: the Journal of Consultation and Liaison Psychiatry. • Uliaszek AA, Prensky E, Baslet G: Emotion regulation profiles in psychogenic non-epileptic seizures. Epilepsy Behav 2012; 23:364-369. • Therapist Guide (CBT informed therapy): W Curt LaFrance and Wincze JP (2015) Treating Nonepileptic Seizures: Therapist Guide (Treatments That Work) 1st Edition. Oxford Press. • Gates and Rowan's Nonepileptic Seizures (Cambridge Medicine) 3rd Edition by Steven C. Schacter (Editor), W. Curt LaFrance Jr. (Editor). Cambridge Medicine.

39. Resources for patients • Psychogenic Non-epileptic Seizures: A Guide available. • Website: www.nonepilepticseizures.com (Services for PNES) • PTSD information: http://www.ptsd.va.gov/public/PTSD-overview/basics/what-is-ptsd.asp

40. Cognitive Behavioral Treatments (CBT) for PNES • CBT operates on current maladaptive thoughts, behaviors and feelings to produce healthy changes. This approach proposes that core beliefs of oneself, others and the future can be modified through interventions. Dysfunctional thoughts and behaviors related to conversion symptoms can be challenged and changed. • CBT is the psychotherapeutic approach that has been reported to have the highest level of efficacy evidence at this time for PNES.

41. Cognitive Behavioral Treatments (CBT) for PNES • CBT • Goldstein et al published a randomized, controlled pilot study in which a group received treatment as usual (TAU) and the other received CBT • Treatment components: 1) treatment engagement, 2) reinforcement of independence, 3) distraction, relaxation, and refocusing techniques when you feel seizure coming on, 4) graded exposure to avoided situations, 5) cognitive restructuring, and 6) relapse-prevention. • CBT group experienced a significant reduction in monthly seizure frequency (TAU group median: 6.75 monthly events; CBT + TAU: 2 monthly events (p=0.002). But at 6 months, the statistically sig difference was lost (p=0.082). • Need follow up data on maintenance of improvements • Goldstein L, Chalder T, Chigwedere C, Khondoker M, Moriarty J, Toone B, et al. Cognitive-behavioral therapy for psychogenic nonepileptic seizures A pilot RCT. Neurology. 2010;74(24):1986-94.