Helps her ground and continue imaginal exposure during
seizures
Frequency: 1-2 per week, milder, shorter duration
Functioning: Able to go to college, live independently, maintain
relationships
Follow up: At 1 year, seizures resolved. Graduated college, engaged,
working as counselor
BDI/PDS: Not formally assessed due to cognitive limitations but
reported less depressed and anxious mood
Significant improvement in quality of life
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Ā
Presentation on treating psychogenic seizures/PTSD with prolonged exposure
1. PTSD and Psychogenic Nonepileptic
Seizures (PNES):
How to Safely and Effectively
Implement Prolonged Exposure
Therapy
LORNA MYERS, PH.D. DIRECTOR PNES TREATMENT PROGRAM-
NORTHEAST REGIONAL EPILEPSY GROUP
DAVID YUSKO, PSY.D. CENTER FOR THE TREATMENT AND STUDY OF
ANXIETY, U. PENN.
LAURIE ZANDBERG, PSY.D. CENTER FOR THE TREATMENT AND STUDY
OF ANXIETY, U. PENN
2. Overview
Introduction to PNES:
* Definitions and Diagnosis
* Association between PTSD and PNES
Introduction to Prolonged Exposure (PE):
* Core components
* Management of emotional engagement
Application of PE with PTSD-PNES patients:
* Case Videos and Illustrations
3. 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, these resemble an epileptic seizure but do not
demonstrate epileptiform activity during recording of brain waves using
EEG.
4. Definition of PNES
PNESs are associated with underlying psychological stressors and there
is often a history of psychological trauma.
PNES is not a single entity but rather a diagnosis given due to the
symptoms of seizures but which is associated with multiple psychiatric
comorbidities
The seizures are conceived of as symptoms of an underlying
psychological condition
PNES must be treated by mental health professionals
5. 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 (FNSD).
A. 1 or more symptoms of altered voluntary motor or sensory fx
B. Clinical findings ļ 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.
ICD-10 F44.5 with attacks or seizures
6. PNES-what is the correct
name?
Current acceptable terms: Psychogenic non-epileptic
seizures (PNES) or Non-epileptic attack
disorder (NEAD)
Terms that have (or should) be abandoned:
ā¦ Pseudoseizures
ā¦ Hystero-epilepsy
ā¦ Hysteria
7. PNES- Facts
PNES occurs most frequently between the ages of 20-40 years. Much
more common in women with a 3:1 ratio.
Estimates of PNES prevalence ranges from 2-33 out of every 100,000
persons.
Approximately 5-10% are dually diagnosed with PNES and epilepsy
a b Reuber M, Fernandez G, Bauer J, Helmstaedter C, Elger C. Diagnostic delay in psychogenic
nonepileptic seizures. Neurology. 2002;58(3):493-5.
b Benbadis, Hauser (2000). An estimate of the prevalence of psychogenic non-epileptic seizures.
Seizure 9(4): 280-1
8. PNES-misdiagnosis
PNES are the most common paroxysmal events that are misdiagnosed
as epilepsy (10-30% in EMU).
Average time that elapses between the first seizure and a definitive
diagnosis 7.2 years.
Up to 20-30% of patients evaluated on an inpatient epilepsy monitoring
unit will be diagnosed as having PNES.
PNES falls in an intersection between neurology and
psychiatry/psychology which complicates smooth transitions to
treatment and creates a āping pongā effect.
9. How is PNES diagnosed?
PNES can have a multitude of presentations:
paralysis, violent thrashing, slurred speech or
stuttering, blinking or odd eye movements,
alteration of consciousness, etc.
The gold standard for diagnosis is Video-EEG during
which all ātypicalā events are recorded, no
associated epileptiform discharges are noted,
before, during or after the event
History and semiology should be consistent with
PNES.
10. What are the guidelines?
Referral Guidelines for seizure disorders have been established by the
NAEC. Delayed or denied referral may be detrimental to the patientās
health, safety and quality of life.
If seizures have not been brought under control after 3 months of care
by a primary care provider (family physician, pediatrician), further
neurologic intervention by a neurologist, or an epilepsy center is
appropriate.
If seizures have not been brought under control after 12 months while
being treated by a general neurologist, a referral to a specialized
epilepsy center/epileptologist should be made.
https://www.aesnet.org/for_patients/find_a_doctor
11. How is PNES diagnosed? Video-EEG
Camera and EEG
11
14. PNES diagnosis by mental
health professionals
While still an inpatient, those patients with clinical features consistent
with PNES should be evaluated by a mental health provider. This
clinician determines whether there are typical risk factors, emotional
triggers to seizures, significant psychiatric comorbidities, and past
attempts at solutions.
If it is not possible to perform a psychological assessment during the
hospital diagnostic phase, psychological assessment should be
performed as soon as possible as an outpatient and therapy should also
begin.
15. Comorbid psychiatric
conditions in PNES
Unipolar or bipolar depression in 21% to 78% of
patients with PNES.
Approximately 50% of patients with PNES also carry
a diagnosis of anxiety disorder
Up to 25% have made a suicide attempt
D'Alessio, L., Giagante, B., Oddo, S., Silva, W.W., Solis, P., Consalvo, D. et al. Psychiatric disorders in patients with
psychogenic non-epileptic seizures, with and without comorbid epilepsy. Seizure. Jul 2006; 15: 333ā339
16. Comorbid conditions in PNES
Pain syndromes (22-89%)1
Dissociative disorders (22-91%)1
Personality disorders (10-86%): Borderline and obsessive compulsive1
Often suffer from Medically Unexplained Symptoms (MUS)2
1 D'Alessio L, Giagante B, Oddo S, Silva WW, Solis P, Consalvo D, et al. Psychiatric disorders in
patients with psychogenic non-epileptic seizures, with and without comorbid epilepsy. Seizure.
2006;15(5):333-9.
2 McKenzie PS, Oto M, Graham CD, Duncan R. Do patients whose psychogenic non-epileptic
seizures resolve,āreplaceāthem with other medically unexplained symptoms? Medically
unexplained symptoms arising after a diagnosis of psychogenic non-epileptic seizures. Journal of
Neurology, Neurosurgery & Psychiatry. 2011:jnnp. 2010.231886.
17. PNES and PTSD
Trauma history: >90% of PNES patients are reported to have these
histories with particularly high numbers of childhood (sexual and
physical) abuse as compared to control groups and the general
population. 1
22 to 100% present with PTSD features 2
1Reuber, M. Psychogenic nonepileptic seizures: answers and questions. Epilepsy Behav. May 2008; 12: 622ā635
2 Fiszman, A., Alves-Leon, S.V., Nunes, R.G., D'Andrea, I., and Figueira, I. Traumatic events and posttraumatic stress disorder in patients with psychogenic
nonepileptic seizures: a critical review. Epilepsy Behav. Dec 2004; 5: 818ā825
18. PNES, trauma and PTSD
History of trauma: 45 out of 61 (73.8%) patients
47%: sexual abuse
43%: physical abuse
34.4%: had suffered loss/death
24.6% had psychological abuse
Single type of trauma reported in 15 patients (31.91%)
2 types of trauma were reported in 14 patients (31.11%)
3 or more types of trauma were reported by 16 out of 61
patients (26%).
Epilepsy & Behavior 2013: Psychological trauma in patients with psychogenic nonepileptic seizures: Trauma
characteristics and those who develop PTSD. Myers et. al.
19. Cognitive differences between patients who have
psychogenic nonepileptic seizures (PNESs) and
posttraumatic stress disorder (PTSD) and patients who
have PNESs without PTSD.
Patients with PNES/PTSD differ from other patients with
PNES on narrative memory (WMS) and subjective memory
complaints (verbal, visual and total) MCI.
Significant elevations in sexual and physical abuse
Greater history of substance abuse
Greater history of being treated with
psychopharmacological agents
They look more like other patients with PTSD alone than like
those with PNES alone.
Myers et. al. Cognitive differences between patients who have psychogenic nonepileptic
seizures (PNESs) and posttraumatic stress disorder (PTSD) and patients who have PNESs
without PTSD. Epilepsy & Behavior 2014
20. Proposal
If patients with PNES/PTSD are different than the other patients with PNES and
more like those with PTSD alone-ļ
Letās treat them with an empirically validated treatment for PTSD making
certain modifications depending on the particular characteristics of the
patientās PNES.
22. Why Prolonged Exposure?
PE has the largest number of studies supporting its efficacy
and effectiveness
PE has been found effective with the widest range of trauma
populations
PE has been found effective in co-morbid populations
(substance use disorders, BPD, psychosis)
Its effectiveness in the hands of non-experts has been
documented in several studies
24. Rationale for PE
Three main factors prolong post-trauma problems:
ā¢Avoidance of trauma related situations (e.g., sleeping without a
light, going out alone)
ā¢Avoidance of trauma related thoughts and images
ā¢The presence of dysfunctional cognitions: āThe world is
extremely dangerousā; āI am extremely incompetent.ā
25. Main Procedures Used in PE
Avoidance of situations ļ In vivo exposure
Avoidance of memories ļ Imaginal exposure
Dysfunctional cognitions ļ Post-imaginal Processing
26. Typical Course of PE
Session 1: Overall rationale, trauma interview, breathing
retraining
Session 2: Common reaction, rationale for in-vivo, in-vivo
hierarchy
Session 3: Rationale for imaginal, imaginal, processing
Sessions 4-9: Imaginal, processing
Session 10: Final imaginal, review progress, relapse
prevention
27. Main Procedures Used in PE:
In-Vivo Exposure
ā¢Repeatedly approaching avoided situations that are objectively safe
ā¢Develop a list of situations the client has been avoiding since the trauma
ā¢Arrange the situations in a hierarchy, least to most challenging
Homework Assignment:
ā¢Begin with assigning exposure to situations that evoke moderate levels
of anxiety (e.g., SUDs = 50)
ā¢Instruct the client to remain in each situation for 30 to 45 minutes, or
until her anxiety decreases considerably
28. Main Procedures Used in PE:
Imaginal Exposure
Standard Instructions are:
ā¢Recall the memory with your eyes closed
ā¢Imagine that the trauma is happening now
ā¢Engage in the feelings that the memory elicits
ā¢Describe the trauma memory in present tense
ā¢Recount as many details as you can including events, thoughts,
and feelings
ā¢Repeat the narrative as many times as necessary in allotted
time
29. Continuum of Engagement
UNDER-ENGAGEMENT
ā¢Difficulty accessing memory
(low SUDS and/or vividness)
ā¢Emotionally disconnected or
detached from memory
ā¢Difficulty visualizing event
ā¢Rushes through revisiting
OVER-ENGAGEMENT
ā¢The clientās emotional
experience during imaginal
exposure does not promote:
ā¢A distinction between
āthinkingā about the trauma
and actually āre-
encounteringā it
ā¢learning that she or he can
safely confront this memory
30. Standard PE: Managing Over-
Engagement
ā¢Remember that the goal of imaginal exposure is to help the client successfully recount
some part of the memory while managing the distress
ā¢ Modify procedures to reduce emotional engagement in the memory, for example:
ā¢ Use past tense and keep eyes open
ā¢ Increase use of empathic, āgroundingā statements (āyouāre doing a great job staying
with itā¦I know that this is distressing, but youāre safe hereā¦ remember, memories
canāt hurt youā)
ā¢ If client seems āstuckā, move the memory forward to foster realization that this
moment ended by asking āand then what happened?ā
ā¢ Other possible modifications: make it more conversational, writing the narrative
31. Case Presentations
What does PE look like when patients are expected to experience
seizures in session?
What modifications (if any) are needed to promote recovery?
Does reduction of PTSD lead to reduction in seizure frequency?
32. MJ Case:
Seizures began ten years prior to meeting her for the first time:
paralysis, tearfulness, and mutism. Duration: 5 -6 hours. Frequency: 28-
32 per week
Past treatments: 1 psychologist, 1 counselor, and 2 psychiatrists
Three epilepsy monitoring hospitalizations
Lost her job 10 years ago and receives disability payments. Never left
alone and when she leaves home does so with a wheel chair.
BDI II 30 (severe) and PDS 24 (mod-sev)
33. MJ Case
Index trauma: Alcoholic father arrives home
in a furious state one night, destroys home
and tries to strangle mom with dog chain in
front of children. The event lasts about 4
hours.
34. MJ case-imaginal exposure
Video of patient doing imaginal exposure and going into a seizure was
shown on this slide. It has been removed to protect patient
confidentiality
35. MJ case-imaginal exposure
Video of patient using a modification through an I-pad in order to
continue with imaginal exposure after going into a seizure was shown
on this slide. It has been removed to protect patient confidentiality
36. MJ: post treatment
Seizure frequency declines to 1 every 2 weeks.
Duration is now maximum of couple of hours and
can walk dragging feet and move hands during
episode. At 24 months f/u: 8 per month (vs pre: 3-5
per day)
BDI II 2 (min) and PDS 16 (mod)
Started to go to interviews for volunteer positions
and became more independent.
37. JJ Case
Seizures began at 8 years of age, stopped at 16 and restarted at 21.
Begins PE at 22 years. Frequency: 40-50 a day, falling, writhing, multiple
injuries
Past treatments: CBT, DBT, EMDR, group and family therapy, hypnosis.
1st psychologist/psychiatrist at 3 years, multiple inpatient
hospitalizations, when her mother contacts me her
psychologist/counsellor and psychiatrist have stated they can no longer
treat her. 24/7 Home health aide is recommended
Past Diagnoses: Borderline personality disorder, depression, PTSD,
autism, eating disorder, substance abuse, and anxiety. Crohnās Disease,
GERD and many food sensibilities
38. JJ Case
Had not been officially diagnosed with PNES with V-EEG
Disability benefits are unrelated to PNES.
First lay eyes on her in my waiting room just off the plane in the throes
of a non epileptic status epilepticus
Typical seizures: violent shaking, sudden collapses to floor, scratching
chest, psychogenically blind and deaf (almost never simultaneous)
BDI/PDS could not be obtained
39. JJ case
Index trauma : at 7 years, her grandfather rapes her while mom is out. Vaginal
and anal penetration. This is the first of 100s of rapes until she turns 12 and he
moves out. Sexual abuse (grooming) began at 4 years.
This is separate from a second traumatic pair of experiences as an adult.
40. JJ case-imaginal exposure
Video of patient doing imaginal exposure and going into seizures was
shown on this slide. Her seizures are very physically involved. She uses
grounding techniques to manage her seizure and is able to continue
with imaginal exposure. It has been removed to protect patient
confidentiality
41. JJ Case: post treatment
Therapy: 5 weeks, 3 times per week. Learns to control her seizures,
uses breathing exercises and grounding techniques to stop seizures
before they start. She improves enough so that her
psychologist/counselor and psychiatrist take her back. Frequency: 3-4
per day.
Telephone consults with psychologist and psychiatrist
We get her treatment in an Anxiety Center to continue PE (has an
unrelated adult trauma and still needs work to close the childhood
trauma).
At 10 months: Seizure-free.
Working, in a relationship, and re-enrolled in college
42. KR case
Seizures began 8 years ago. Frequency: 5-7 per day. Violent tics in neck,
arms, torso, yelling.
Past treatments: EMDR, spiritual counseling, psychiatric treatment,
inner child, art therapy, etc.
Receives disability benefits for unrelated condition. Became homeless
at one point and shunned by family.
Index trauma: raped by 3 teens at 5 years of age
5 weeks treatment, 3 times per week in NY
BDI 28 (mod), PDS 41 (sev)
43. KR case-imaginal exposure
Video of patient doing imaginal exposure and going into a seizure was
shown on this slide. It has been removed to protect patient
confidentiality
44. KR: post treatment
His last seizure was on the last day of therapy with me.
Returned home and psychiatrist slowly removed medications, continues
to work with his psychologist
Has been seizure-free 8 months
Was granted permission to drive again
Has been hired for a lead role
BDI 14 (mild), PDS 18 (mod)
45. MW Case:
Seizures began December 2013 (one day after she fell on staircase)
followed by almost 4 months of paralysis, mutism, violent seizures with
thrashing (sometimes daily) that resulted in blows to head against floor
Multiple neuro hospitalizations, ER visits, very mistreated by some
physicians
Past treatments: 2 psychologists, evaluated by a psychiatrist, 2
exorcisms
Lost her husband and job
BDI II: 24 (mod) and PDS: 27 (mod-sev)
46. MW case
Index trauma: a demented elderly lady she cared for (as home health aide)
became enraged, berated her for hours and when patient tried to get away, she
fell down the basement staircase.
The old lady resembled āthe devilā and the next day the patient has her first
episode that is interpreted by the family as a āpossession.ā
47. MW case-imaginal exposure
Video of patient doing imaginal exposure and going into a seizure was
shown on this slide. The therapist demonstrates how to continue
speaking with her even while she is in the episode and helps her ācome
out of it.ā It has been removed to protect patient confidentiality
48. MW case: post treatment
Seizure-free since May 2014.
BDI II: 14 (min) and PDS: 15 (mod)
Returned to nursing school and graduated from first level training. Is
working 2 jobs and now relocating to another state.
49. Treatment series of patients
with PNES/PTSD with PE
13 adult patients
Video-EEG monitoring was utilized to confirm a diagnosis of PNES
PTSD was diagnosed through neuropsychological testing (TSI-II and
clinical interview).
Enrolled in a 12-15 week prolonged exposure program.
Symptoms were assessed on first, last and every other session: Beck
Depression Inventory II and Post Traumatic Stress Diagnostic Scale
(PDS). Seizure frequency was noted every week of treatment.
Pre and post treatment scores were compared using the Wilcoxon
Signed Rank test.
50. Treatment series of patients
with PNES/PTSD with PE
At treatment initiation:
ā¦ 11/13 patientsāseverely/moderately depressed range
ā¦ 13/13 patients āsevere/moderate range for PTSD symptomatology.
By final session significant declines in all measures:
ā¦ 12/13 patients minimal/mild depressive symptoms. (pā¤ 0.004)
ā¦ 11/13 mild/moderate range for PTSD symptomatology. (p ā¤0.002)
ā¦ Seizure frequency significantly diminished at the time of treatment discharge
in all patient (p ā¤0.002)
52. Recommendations for
psychologists
At the outset of treatment: Obtain a description of typical seizures and
their frequency
ā¦ Aura?
ā¦ How do they start?
ā¦ What are their characteristics? Patient falls, makes vocalizations, thrashes, shakes, self
harms (scratches, bangs), walks, bites, is hearing, speech or writing retained during episode,
duration?
ā¦ Is there something that they find helps during the episode?
ā¦ How long to recover?
53. Recommendations for
psychologists
Have an understanding with patient that you, the therapist, may touch them
during the episode (come to an agreement as to what part of the body is safe to
touch)
ā¦ Is there a part of the body that cannot be touched?
ā¦ Is it ok to squeeze arm or shoulder?
ā¦ If patient falls, make sure it is understood that therapist may need to hold
body or head to avoid damage or maybe to place a pillow under head.
54. Recommendations for
psychologists
Ensure patient is safe from injuries by making necessary
modifications to office during these sessions
ā¦ Does session need to be conducted on a carpeted floor?
ā¦ Is there wooden or hard furniture that needs to be moved out of
the way?
ā¦ Do you need to have a pillow?
ā¦ If patient scratches, should they use mittens?
55. Recommendations for
psychologists
Begin therapy by teaching a breathing retraining exercise and make sure it is
practiced and learned.
Speak to patient during the episode: grounding (reminding patient that this is
an office, who you are, and that this is a session)
After a minute or two, depending on how episode is presenting, suggest that
the episode is near its end and focus on breathing
Process what happened as soon as episode ends. It is not necessary to stop a
session just because of an episode if the patient can continue. Assess if patient
can continue with distressing topics (e.g. exposure) or if you should move on to
processing.
56. Recommendations for
psychologists
Do not leave patient alone or allow to leave office until they are
recovered
ā¦ If you have an exam room, patient may remain there resting or may remain
in a waiting room
ā¦ 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, or is not responsive, avoid
calling 911.
57. Take-Aways
- Initial evidence supporting use of trauma-focused EST in
this population
- Results in the typical, positive PTSD treatment outcomes,
PLUS secondary outcomes in seizure reduction
- Safe, feasible: 13 patients, 0 adverse events
- Need RCTs to establish efficacy compared to waitlist or
comparison treatments
- Interesting to determine whether PTSD symptom
reduction mediates reduction in seizure frequency
58. For more resources, contact:
Lorna Myers, Ph.D. David Yusko, Psy.D.
820 Second Avenue, Suite 6C 3535 Market Street
New York, NY 10017 Philadelphia, PA 19104
lmyers@epilepsygroup.com yusko@mail.med.upenn.edu
www.nonepilepticseizures.com
Laurie Zandberg, Psy.D.
3535 Market Street
Philadelphia, PA 19104
zandberg@mail.med.upenn.edu
Editor's Notes
How many people familiar? Use in clinical practice?
For context, talk a little bit about the theory behind PE and how itās used.
I think the first thing to say is that PE is far from a new tx, extensively researched, over 29 RCTs by independent research groups.
Itās efficacy in reducing not only PTSD symptoms but also many associated problems (depression, anger, guilt)
And very relevant to the present topic, in the past decade, PE been tested. Populations where clinical judgment might say, huh, wonāt focusing on a trauma potentially increase problematic or dangerous behavior?good data to suggest that PE, either in isolation or as adjunctive tx, safely delivered.
Letās talk a little about how ppl develop and maintain PTSD, in order to talk about how PE works
Avoidance ā imagine you are in a car accident.
In session.
Point of imaginal exposure, end of the day learn, there is not a single part of this memory that I canāt think about and tolerate (reduces intrusive symptoms)
Why have people close their eyes? Tricks to promote emotional engagement. Change a file on computer ā need to turn on the computer, bring up that file.
So ok great, we want ppl to learn that they can engage with emotions, tolerate it. But then what actually happens.
Underengagement ā the heat is not quite on. You are trying to bake something, but the heat is not on.
Over-engagement ā much more rare, is the boil over. Emotions become so intense, that the person ___.