In the course of your work, you may get asked about different seizures. Not all seizures are considered epilepsy, and here we discuss psychogenic non-epileptic seizures (PNES).
Seizures can be divided into three major categories:
- Epileptic seizures (ES)
- Physiologic non-epileptic events (NEE)
- Psychogenic non-epileptic seizures (PNES)
The brain is made up of millions of nerve cells. These cells, called neurons, generate electrical discharges, sending messages to the body to produce thoughts, feelings and actions. An epileptic seizure is a disruption in the normal pattern of these discharges, caused by the neurons firing all at once and at a much faster rate. This can cause changes in sensation, awareness, and behaviour, or sometimes convulsions and loss of consciousness, depending on where the seizure starts and spreads in the brain.
Physiologic non-epileptic events
A wide variety of medical events can be misinterpreted as epileptic seizures, but are essentially caused by body changes that produce a seizure or seizure-like event. These are neither epileptic nor psychogenic.
These “seizures” have a physical cause (relating to the body). They include fainting (with convulsive or jerking movements), concussive seizures, cardiac events, metabolic causes such as diabetes or renal disease, even severe cases of sleep apnoea can cause seizures. Because there is usually an obvious physical cause, they can be relatively easy to diagnose and the underlying cause can be found. In these cases, it is the underlying cause that is treated then the seizures will stop. They also don’t tend to recur unless the provoking cause happens again.
Sometimes these are termed acute symptomatic (reactive) seizures because they are the body’s reaction to a provocation.
Psychogenic non-epileptic seizures
PNES are a physical symptom of a psychological disturbance and are usually involuntary.
They are ‘sudden, involuntary changes in behaviour, sensation, motor activity, cognitive processing (can include change in level of consciousness) or autonomic function (e.g. blood pressure, heart rate) linked to psychological or social distress.’ These events look like epileptic seizures, but are not caused by abnormal electrical discharges in the brain. They are often triggered by an emotional or psychological cause rather than a physiological one and can be seen in people with or without epilepsy.
PNES function as a coping mechanism. People with these events are more likely to use poor coping strategies to handle stress.
Psychogenic seizures include different types:
- Dissociative Seizures happen unconsciously, which means that the person has no control over them and they are not ‘put on’. This is the most common type and is what we will discuss here. This may also be termed or diagnosed as Conversion Disorder or Functional Neurological Disorder.
- Factitious (or malingering) seizures are far less common and mean that the person has some level of conscious control over them. An example of this is when seizures form part of Münchausen’s Syndrome, a rare psychiatric condition where a person is driven by a need to have medical investigations and treatments.
Factitious disorder and malingering imply that the person is purposely deceiving the physician (i.e., faking the symptoms). The difference between these two is that, in malingering, the reason for the deception is tangible and rationally understandable (albeit possibly wrong) such as avoiding military duty, avoiding work, obtaining financial compensation, evading criminal prosecution, or obtaining drugs. In factitious disorder, the motivation is a pathologic need for the sick role.
Malingering is not considered a mental illness, whereas factitious disorder is.
A generally accepted view is that most patients with PNES have conversion disorder, rather than malingering or factitious disorder.
Other names for psychogenic non-epileptic seizures
Psychogenic non-epileptic seizures have been labelled many names. Some common terms used are:
- Pseudo seizures
- Dissociative seizures
- Non epileptic events
- Non epileptic attack disorder (NEAD)
- Functional neurological disorder (FND)
- Conversion disorder (psychiatric diagnosis)
The diagnosis of PNES can be challenging and requires careful evaluation to exclude true epileptic seizures or other medical conditions that cause seizures. Neither epileptic nor nonepileptic seizures should be dealt with as a diagnosis of exclusion—they may coexist. Prolonged video EEG monitoring is considered the gold standard for diagnosis, but sometimes it can take a long time to get this organised.
Early accurate diagnosis is more likely to help with successful treatment. A delay in diagnosis often means no or inappropriate treatment, including unwanted side effects of antiepileptic drugs and aggressive interventions, such as intubation for pseudostatus epilepticus. PNES can be difficult to manage or control if the seizures have been happening for a long time.
There really are no official guidelines or treatment regimens for PNES. Most neurologist refer their patient to psychologists or psychiatrists, and only continue to see them as a patient if they have epilepsy as well. Treatment of PNES should consist of psychological or psychiatric intervention and there now is a recent shift towards also using physical therapy in combination with psychotherapy.
It helps to determine if there are triggering or maintaining factors that are important, and to try to manage these. For example, is there an ongoing physical trigger that can be treated (for example pain, a neurological illness like migraine, etc.)? Is there depression that can be treated? Are there specific psychological issues that the person feels are relevant and would like to explore? Is there some form of ongoing stress that needs to be managed?
Some people find benefit from complementary treatments such as meditation, hypnosis and acupuncture.
About 60 to 70 percent of people find benefits from physical therapies and rehabilitation based on an understanding of their condition.
Principals of Therapy
Principles of neuropsychological interventions
- Supportive counselling and education regarding the diagnosis
- Homework to record the main features of the main symptom (chart topography: e.g. where, when, triggers, duration)
- Psychoeducation regarding physiological arousal and mind-body connection (basic neurobiology)
- Introduction of strategies to regulate physiological arousal, e.g. grounding exercises, progressive muscle relaxation, mindfulness
- Cognitive Behavioural Therapy for any comorbid depression and anxiety
- Re-prioritisation of life and its meaningful activities as a primary focus, with focus on symptoms being a second/ later priority
Principles of neurophysiotherapy interventions
- Development of patient centred goal setting. Motivational interviewing is being used when appropriate
- Implementation of graduated exercise program incorporating normal movement patterns with specific de-emphasis on dysfunction
- Exercise program addressing any secondary impairments such as
- Disuse weakness
- Reduced balance
- Cardiovascular endurance
- Development and prescription of home (or ward) exercise program with corresponding exercise log/diary
- Education and advice highlighting the benefits of exercise on central sensitivity and chronic fatigue as appropriate
- Liaising with neuropsychologist regarding sleep hygiene and incorporating rest periods through the day as appropriate
The major aim of therapy should be long term improvement, and to equip patients with the necessary knowledge and skills they need in the long term – including a longer term self-management and relapse plan.
Medication management should be very restricted and mainly used to relieve the symptoms of comorbid anxiety or depression.
Living with psychogenic non-epileptic seizures
The general first aid guidelines for PNES are the same as for epileptic seizures:
- keep the person safe from injury or harm, and only move them if they are in danger
- if they have fallen, put something soft under their head to protect it
- allow the seizure to happen, don’t restrain or hold them down
- stay with them until they have recovered.
Keeping a normal routine if possible
For some people, PNES may disrupt their daily life or they may want to avoid activities in case they have a seizure. However, it can help to keep as normal a routine as possible, and try to take part in activities with other people, to avoid becoming isolated and anxious, which may make seizures more likely.
Treatment for PNES may work best when someone is active in life, including working, studying or taking part in other activities which are meaningful or satisfying.
There is good argument that people with PNES need to discontinue driving until they are controlled. Each case may be looked at individually, but for safety of the person and general public, it is advisable they be told not to drive.
Like epilepsy, PNES can be a devastating illness with significant burden on the persons health and healthcare system. Unfortunately historically people with PNES have been treated like they are “faking” their seizures and a diagnosis of PNES (correct or incorrect) can also pigeon hole these patients in the eyes of some healthcare providers. To help the person with PNES, it is fundamental that family and other people involved in their care need to understand the diagnosis and to try to get rid of misunderstandings (like it is “all in the mind” or not real).
Information source for clients
I find this Q&A section of FND Hope a good initial resource to answer some questions. This entire website is quite an extensive source of information as well https://fndhope.org/fnd-guide/common-questions/
PNES Facebook Support Group https://www.facebook.com/Psychological-Non-Epileptic-Seizures-144184112260986/