1. Psychogenic Non-epileptic Seizures
Introduction-Lorna Myers, Ph.D.

2. What are Psychogenic non epileptic seizures (PNES)?
Psychogenic nonepileptic seizures (PNES) are sudden, involuntary changes in behavior, movement, sensation and/or consciousness, that represent a reflex-like response to physical and/or emotional distress that the brain is detecting.

3. I don’t feel any stress before the seizure
The person may or may not be aware of the distressing factors that can be associated with PNES.
The brain automatically uses physical symptoms (e.g., PNES or other functional neurological symptoms) to involuntarily channel the expression of distress or discomfort.
In other words, PNES is a response to stimuli not entering conscious awareness (in the same way as one may step out of the way of a puddle while walking on a sidewalk and talking to someone without ever becoming aware of the puddle).

4. What is the difference between epilepsy and PNeS?
An epileptic seizure (ES) is a sudden change in behavior, movement, sensation, and/or consciousness (alertness) that is involuntary and usually short. It is associated to an abnormal electrical pattern (like an electrical "storm") in the brain. The abnormal electrical pattern can usually be seen at the time of the seizure in an EEG (electro-encephalogram).
A psychogenic nonepileptic seizure (PNES): may look and feel like what is described above (epileptic seizures), but it happens without the abnormal electrical changes that happen during epileptic seizures.

5. Functional Neurological disorder (FND)
FND is defined by motor and sensory symptoms (e.g., tremor, dystonia, limb weakness, numbness, seizures), that demonstrate clinical features incompatible with other neurological/medical diagnoses and that are associated with significant distress/functional impairment.
“FND is due to a problem with the functioning of the nervous system and thought to be the result of the brain’s inability to send and receive signals properly, rather than disease.” (FNDhope.org)

6. Why don’t we just call them non-epileptic seizures (NES)?
Nonepileptic seizures can have many different causes.
The most common type of nonepileptic seizure is psychogenic (PNES).
Other nonepileptic seizures are caused by specific physiological or medical conditions including:
* Syncope (a temporary loss of consciousness, also known as "fainting" and usually due to insufficient supply of oxygen to the brain);
* Sleep disorders, such as narcolepsy ("sleep attacks"), or daytime sleepiness due to sleep apnea (period of pauses in breathing while the person is asleep);
* Certain movement disorders, etc.

7. What do we call these seizures/events?
Antiquated/abandoned terms :
Pseudo seizures
Hysterical seizures
Current terms:
Psychogenic non-epileptic seizures (PNES)
NEAD-Non epileptic attack disorder (UK)
Dissociative seizures
Functional seizures

8. 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

9. The doctor told me I am faking these and to stop
PNES episodes are very real and are not purposely brought on (although with treatment, the patient can gain control over them).
Unfortunately, many doctors and nurses are not well-trained in what PNES are and think that because emotional factors or stress are associated to PNES, patients "must have control" over them.
They are not volitional, to gain attention, to gain access to drugs, or to get out of work or school.
Robson C (2017) “Blaming, shaming, humiliation”: Stigmatising medical interactions among people with non-epileptic seizures, Wellcome Open Res; 2: 55.

10. Does having PNES mean I am crazy?
People who have PNES are not "crazy."
The brain is dealing with underlying physical and emotional distress and expressing this through these episodes.
There are other conditions where stress is thought to play a part in the development or maintenance of physical symptoms, (e.g. asthma, fibromyalgia, irritable bowel syndrome, alopecia areata, chronic fatigue, tension headaches, etc.)

11. How important is it to make the diagnosis quickly?
The sooner, the better! A misdiagnosis of epilepsy can lead to: • Dangerous interventions in the emergency room, (e.g. being "loaded up" with powerful drugs and being intubated) that can lead to death.
• Spending years taking unnecessary medications
Roderick Duncan, Meritxell Oto, Jessica Wainman-Lefley (2016) Mortality in a cohort of patients with psychogenic non-epileptic seizures. J Neurol Neurosurg Psychiatry 2012;83:761e762. doi: /jnnp

12. How important is it to make the right diagnosis?
Potential for physical injuries is high: Nearly 60% experienced PNES-related injuries.
51% had experienced Psychogenic non-epileptic seizure status (i.e., lasting more than 30 minutes),
27.8% had been admitted to intensive care units=extremely dangerous
Kanner A (2003) Psychogenic Nonepileptic Seizures Are Bad for Your Health. Epil. Curr., pp

13. How is the diagnosis of PNES made?
Can someone tell if it is PNES or epileptic seizures (ES) just by looking at the event itself?
No!
Video EEG is the gold standard. It allows doctors to look at both the brain wave data, as well as the images on video during the actual episode.

14. How is the diagnosis of PNES made?

15. How is PNES diagnosed? Video-EEG
Camera and EEG machine

16. Ambulatory Video-EEG
In-home test

17. Are there other tests?
Neuropsychological testing (cognitive and psychological) helps delineate cognitive functions and psychological profile.
Psychiatric/psychological interview.
Other diagnoses need to be ruled out -non-epileptic seizures (physiological)

18. Diagnostic delay
Even with cutting-edge technology available to medical doctors these days, the average delay between the time symptoms begin and the person is diagnosed with PNES is between 7-10 years.

19. A correct diagnosis of PNES will allow the patient to:
• Start psychological treatment which can lead to seizure control. • Allow the psychologist/psychiatrist and epilepsy doctor decide when and if anti-epileptic-drugs can be tapered off. • Start making changes in life based on this new diagnosis (i.e. gradually become more independent and make important life decisions)

20. Can psychogenic non-epileptic seizures cause brain damage or be fatal?
Short answer, is no.
However, if during the seizure, the patient suffers a blow or physical injury, the situation changes.
Usually an ambulance or hospital visit is not necessary when a typical PNES occurs UNLESS there has been a secondary injury suffered during the seizure, the duration is unusually long or the seizure presents very differently.

21. Can you still be diagnosed with PNES if you also have a neurological condition?
A past history of mild traumatic brain injury (TBI) is not uncommon in those with PNES and the association is stronger in PNES than in epilepsy.
Fibromyalgia and chronic pain are common comorbidities
Around 10% of patients with PNES also have past or present epilepsy as well

22. Can PNES occur at any age?
Although PNES can occur at almost any age, it most commonly starts in teen years and in adults between the ages of
PNES is rare in children younger than 5 and less common in adults older than 55 but it certainly has been reported as occurring at these ages as well.

23. A few gender facts Among civilian populations: 3:1women to men Males:
* tend to use avoidance stress coping strategies and tend to exhibit depressive symptoms.
Women:
* significantly higher rates of sexual trauma
* significantly higher rates of trauma symptomatology (dissociation and sexual disturbances)
Myers L, Trobliger R, Bortnik K, Lancman M (2017). Are there gender differences in those diagnosed with psychogenic non-epileptic seizures? Epilepsy Behav. DOI:

24. Special populations: Veterans
High rates of TBI and high rates of PTSD
82% of mild TBI as cause of seizures had PNES while 90% of those with severe TBI as cause of seizures had epilepsy
Interval from onset of spells to diagnostic admission (months) is significantly longer in vets.
Among veterans: preceding history of PTSD is significant psychiatric predictive factor for psychogenic seizures
Salinsky M, et al. Psychiatric comorbidity in veterans with psychogenic seizures. Epilepsy Behav. 2012;25(3):

25. Is this a rare condition?
The number of people affected with PNES is not exactly known. It has been reported that out of 10 patients seen in epilepsy inpatient units for difficult-to-treat seizures, 2 to 5 actually have a diagnosis of PNES.
About one in eight people newly referred to an epilepsy specialist turn out to have PNES.
PNES is about as prevalent as Multiple Sclerosis.
Benbadis & Hauser (2000) An estimate of the prevalence of psychogenic non-epileptic seizures. Seizure 2000; 9: 280–281

26. Why might someone develop PNES (risk factors)?
· A history of one or more head injuries; · Fibromyalgia and pain syndromes; · Significant problems with anger management, impulse control and/or assertiveness; · High anxiety (including panic and worrying) and problems with stress coping; · Depression and difficulty with keeping emotions regulated; · A past history of traumatic experiences (such as emotional, physical and/or sexual abuse); · Difficulties in relationships, family dysfunction; · Alexithymia (a difficulty in recognizing and/or verbalizing emotional experiences).

27. How important is psychological trauma?
Traumatic experiences has been observed in 40 to 100% of PNES patients (according to different studies).
In adults with PNES, 25-75% of patients report a history of childhood physical or sexual abuse.
Other psychological traumas: childhood neglect, combat, witnessing or being the victim of a violent crime as an adult, major accidents or natural disasters, significant medical/health issues, sudden loss of a loved one (e.g. a parent or a child), etc.
@ 50% of patients with PNES carry a diagnosis of post-traumatic stress disorder (PTSD).

28. How important is psychological trauma?
In children and adolescents with PNES, traumatic experiences can also occur prior to onset of PNES, but is less common than in adults.
Physical and sexual abuse occurs only in about 9-14% of children/teens
More common: Bullying (up to 50%), family disruption, learning problems, relocation/changes in school, and death or loss of a parents or caregiver.

29. 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: 333–339

30. 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,‘replace’them with other medically unexplained symptoms? Medically unexplained symptoms arising after a diagnosis of psychogenic non-epileptic seizures. Journal of Neurology, Neurosurgery & Psychiatry. 2011:jnnp

31. Is treatment available?
Cognitive behavioral treatments including prolonged exposure therapy
Psychodynamic therapy
Mindfulness-based treatments
Hypnotherapy
Group therapies and psychoeducation

32. How do you feel about this diagnosis?
The patient may experience a range of emotional reactions when told they have PNES. Common reactions:
"I feel CONFUSED" -- It can be confusing especially if you believed you had epilepsy.
"I feel ANGRY" - Some people may feel angry that they were diagnosed with a different diagnosis in the past and made to lose precious time. They may feel angry with the doctor who now diagnosed them with PNES because they feel this is a wrong diagnosis.
"I have DOUBTS" -- Some people do not accept the explanation of PNES because they do not see any clear emotional difficulty in their lives. Remember, PNES episodes may occur without a clearly identifiable trigger or significant life stressor at the time of their onset.
"I feel RELIEVED" -- Some people are glad that a clear diagnosis was finally made so they can receive the right treatment for their condition.

33. What can I do to make an episode stop?
These techniques are NOT a replacement to the treatment for PNES recommended by your doctor.
If you experience a "warning symptom", you can try some of these activities that may help prevent further progression of the episode.
1) First of all, make sure you go to a safe place, where the risk of injury is minimal.
2) Distraction: a) Count backwards from 100 to 0 in sevens, "100, 93, 86, 79" or fours, "100, 96, 92, etc.", or count forward alternating numbers and letters. b) Try singing your favorite song.
3)Sensory grounding:  a) Feel something, preferably something rough or textured, with your fingers and thumbs. Really focus on what it feels like. As you do this, also put your feet flat on the floor and be aware of the ground solid under your feet. You can alternate your attention between what you are holding in your hands and other points of contact in your body with the chair, floor, etc. b) Look around and really focus on the things you can see. Name and describe them to yourself in detail.
4) Maintaining attention focus: Remind yourself where you are, what day of the week it is, what year it is, who you are with, etc. Keep going through this list, alternating with other distraction or sensory grounding techniques.

34. Is there an official awareness color for PNES?
2014, a grassroots movement on Facebook, chose two colors to represent PNES. Since PNES typically combines seizures and psychological trauma, PNES advocate, Eric L. Nelson, proposed Purple to represent seizures and Teal to represent PTSD. These received strong support.
PNES colors: Purple/Teal.
LeeLee N. Mike has to date created a multitude of graphics featuring these colors to spread awareness.

35. Official PNES awareness ribbon

36. Are there resources for PNES?

37. A Leelee N. Mike graphic