Psychogenic Nonepileptic Seizures
Webinar, "An Overview of Psychogenic Nonepileptic Seizures," recorded May 29, 2019. In this video, Dr. Kanner talks about PNES and who's affected, risks, and more.
Psychogenic nonepileptic seizures (PNES) are a common disorder with many different symptoms. PNES resemble, mimic, or can appear outwardly like epileptic seizures.
PNES are diagnosed in 20 to 30% of people seen at epilepsy centers for drug-resistant seizures.1 According to Psychogenic Nonepileptic Seizures, the rate of PNES is 2-33 per 100,000 in the general population. This makes PNES nearly as prevalent as multiple sclerosis or trigeminal neuralgia. Still, PNES has largely remained a conversation held behind closed doors.
Other disorders are often seen in people diagnosed with PNES and may be contributing factors, including:
- A history of mood disorders
- Anxiety
- Dissociative disorders
- Post-traumatic stress disorders
- History of physical, emotional, or sexual abuse
- Family stressors or conflict
- Psychosis
- Personality disorders
- Attention problems
- History of traumatic brain injury
- Substance abuse
- Behavioral disturbances (anger, aggression, withdrawal)
What Is PNES?
PNES are attacks that may look like epileptic seizures but are not caused by abnormal brain electrical discharges. Instead, they are caused by psychological distress.
"PNES is not caused by abnormal brain electrical activity."
People with PNES may look like they are experiencing generalized convulsions, similar to tonic-clonic seizures. Falling and shaking may occur. Less frequently, PNES may mimic absence seizures or focal impaired awareness seizures. A physician may suspect PNES when the seizures have unusual features, such as type of movements, duration, triggers, and frequency.
What Causes PNES?
The cause of psychogenic nonepileptic seizures is psychological. In most cases, PNES accompany an underlying psychiatric disorder. There is no known physical cause for PNES, such as an illness or injury.
Some disorders further explain physical symptoms of psychological origin.
Somatic Symptom Disorders
Somatic symptom disorders have symptoms that relate to the body (somatic). Physical symptoms appear, but no physical cause is found, leading to a psychological diagnosis. Somatic symptom disorders explain that a specific traumatic event can be identified in some people with PNES. Traumatic events include physical or sexual abuse, incest, divorce, death of a loved one, or other great loss or sudden change.
Conversion Disorder
Conversion disorder refers to physical symptoms caused by psychological conflict. The unconscious converts this conflict into symptoms similar to neurological problems.
This disorder tends to develop during adolescence or early adulthood but may occur at any age. It appears to be somewhat more common among women.
How Is PNES Diagnosed?
According to Selim R. Benbadis, MD, a leading pioneer in the study of PNES, while EEGs are helpful in the diagnosis of epilepsy, they are often normal in people with proven epilepsy and cannot be used alone as a diagnostic tool for epilepsy. The most reliable test to make the diagnosis of PNES is video EEG monitoring that records the episodes in question.
- During a video EEG, the person is monitored (over a time period spanning anywhere from several hours to several days) with both a video camera and an EEG until a seizure occurs.
- Through analysis of the video, the diagnosis of PNES can be made with near certainty.
When someone shows signs of seizures, it is critical to determine if they are epileptic seizures or not. An accurate diagnosis is critical to receiving the correct treatment.
When a person shows signs of events or seizure disorder symptoms. a medical evaluation is required, which includes:
- A complete medical, neurologic, and psychiatric history
- A description of the event from witnesses, usually family or friends
- Results of prior diagnostic testing (brain imaging, bloodwork, EEG, cardiac testing)
- Response to prior treatment with antiseizure medications
- A complete medical and neurologic examination
- Video EEG monitoring showing the outward appearance of any events
Misdiagnosis
The misdiagnosis of epilepsy in people with PNES is common. In fact, according to Benbadis, at least 25% of people who have a previous diagnosis of epilepsy and are not responding to drug therapy are found to have been misdiagnosed.
“Unfortunately, once the diagnosis of epilepsy is made, it is easily perpetuated without being questioned, which explains the usual diagnostic delay and cost associated with PNES,” he states.
The diagnosis of PNES may be difficult initially for several reasons:
- Physicians are taught almost exclusively to consider (and exclude) physical disorders as the cause of physical symptoms.
- Physicians are more likely to treat the more serious condition if they doubt the diagnosis.
- Seizure diagnosis depends largely on observations of others. Observers may not be trained to notice subtle differences between epileptic and nonepileptic seizures.
- Many physicians do not have access to video EEG monitoring. Doctors who specialize in epilepsy have access to this type of EEG.
Due to these reasons, a person may be prescribed anti-seizure medications when the diagnosis is unclear.
Receiving A PNES Diagnosis
Receiving a new diagnosis of PNES can be difficult to process and understand. A person may have a range of emotions, such as anger, doubt, sadness, confusion, or relief.
Remember to take time to discuss your diagnosis with your doctor. Ask questions and speak up if you don’t understand. Your doctor will help you better understand symptoms and other problems related to your PNES.
Your feelings are important. Share your feelings about PNES openly with your medical team, friends, and family. They are your support network as you go through the process of diagnosis and treatment.
PNES can also be difficult for family members to understand. For better support, consider involving your family in discussions with your healthcare team. They can help ask questions and share their observations.
Then they can also have their questions answered. It will be reassuring to you and your family to know that with a diagnosis of PNES confirmed, you can now be referred for the most appropriate treatment.
Treatment For PNES
PNES treatment focuses on addressing the underlying psychological cause or psychiatric disorder, through therapy or medication for mental health conditions. There are no medications proven to treat PNES.
Anti-seizure medication will not help a person with PNES. In fact, the side effects of medication can make symptoms worse.
A neurologist, psychologist, psychiatrist, and other healthcare providers may be part of your healthcare team. Many mental and behavioral health providers are trained to deliver psychological therapies. It's important to find a provider who has a good understanding of PNES and its specific challenges. Mental health providers who deliver treatment for PNES usually include:
- Psychiatrists
- Psychologists
- Social workers
- Licensed mental health counselors
Important Health Considerations in Treating PNES
Taking care of your general health will be an important part of helping you be successful with your PNES treatment. Some general principles to apply include:
- A healthy diet- make healthy eating and regular meals part of your daily routine.
- Daily exercise- even a simple 20-minute walk each day makes a difference. Consult your doctor to help create the best individualized workout routine.
- Quality sleep- getting the right amount of sleep for you is vital.
- Connect with loved ones- keep in touch with family and friends to get the most from healthy social relationships. There are positive benefits for both your mind and body.
Staying Connected to Your Neurologist
Your neurologist has played a key role in helping you reach a diagnosis of PNES. They can also help you build a team of different healthcare workers for your needs, including mental health providers. It is important to stay in good contact with your neurologist.
Some reasons to continue follow-up with your neurologist include:
- It is not uncommon for other neurologic conditions (example, headache) to accompany PNES.
- 5 to 20% of people with PNES may also have epileptic seizures or may have experienced seizures in the past that are under control on anti-seizure drugs.
- When a diagnosis of PNES is made, it is common that anti-seizure medications are stopped. However, when ASMs are stopped, epilepsy may be found unexpectedly.
- Uncontrolled PNES can result in emergency room (ER) and intensive care unit (ICU) admissions.
- Between 30 to 50% of people with PNES have at some time been incorrectly admitted to an ICU with a diagnosis of status epilepticus.
It is vital to get the right treatment for PNES and related conditions. Your neurologist will help ensure you receive the right treatment for you.
Treatment Issues
In an editorial published in Epilepsy & Behavior, Benbadis wrote, “The American Psychiatric Association has abundant written patient education material available on diverse topics, but none on somatoform disorders. Psychogenic symptoms are also not the subject of much clinical research. Thus, there seems to be a severe disconnect between the frequency of the problem and the amount of attention devoted to it.”2
"In addition to being common, psychogenic symptoms pose an uncomfortable and often frustrating challenge, both in diagnosis and management ~ Selim R. Benbadis, MD "
"Somatoform disorders are very difficult to treat because as soon as you extinguish one symptom another one pops up. These disorders consume a lot of time and money and tend to invoke a tremendous amount of frustration...” said Susan Kelley PhD, professor of Behavioral Health at the University of South Florida, Tampa, and psychotherapist in private practice. Kelley herself has been able to lessen this frustration in her practice. She has adopted a trauma-focused clinical approach, which not only serves her well as a clinician, but also helps her patients with PNES to overcome their seizures.
“For some patients with psychogenic nonepileptic seizures, the seizures are a manifestation of trauma, which is also known as post-traumatic stress disorder (PTSD). To treat people with PTSD, the clinician must take the seizure apart to see what the seizure represents in terms of emotions and memory, as well as where this trauma is stored in the body,” she continues.
She suggests that when a person experiences trauma, their body can absorb this trauma. Therefore, a seizure is the body’s way of expressing what the mind and mouth cannot. What Kelley has found to be the most effective treatment for PNES is a therapeutic technique called eye movement desensitization and reprocessing (EMDR). EMDR uses multiple techniques to help people heal from trauma.
Veterans, Epilepsy, and PNES
Karen, a veteran, shares her journey with psychogenic nonepileptic seizures. VA doctors Hamada Altalib DO, MPH, and W. Curt LaFrance Jr, MD, MPH, talk about the differences between psychogenic seizures and seizures in epilepsy. They also discuss diagnosis and treatment of PNES.
Types Of Psychological Therapy
There are several types of psychological therapy that can be used to treat PNES. Your healthcare team will decide on the right choice for you based on your history and symptoms. The following therapies may be used but are not the only therapy options.
Cognitive Behavioral Therapy (CBT)
This is a common type of psychotherapy used to treat many different types of psychological disorders. CBT is the most studied in relation to treatment for PNES.
CBT can be used:
- Alone or in combination with other therapies
- To treat depression, anxiety, and PTSD, which often accompany PNES
- As a tool to help any person learn to better manage stressful life situations
- To help people learn skills they can use to change their thoughts and behaviors related to PNES symptoms
Prolonged Exposure Psychotherapy (PE)
This is one type of CBT that can be used to treat both PNES and PTSD. Prolonged exposure psychotherapy:
- Is used to help people confront fears
- Helps people deal with past experiences that are traumatic
- Aims to deal with difficult memories or past situations in a safe space with a qualified therapist
Interpersonal and Psychodynamic Psychotherapy
This involves working with a therapist to talk through emotional struggles or conflicts that can lead to PNES. By using therapy to talk through emotional issues, a person may improve relationships and social functioning, therefore lowering their day-to-day emotional distress. This makes it less likely for the person to experience PNES.
Interpersonal and psychodynamic psychotherapy includes working through unconscious processes (things a person might not be aware of) that can influence behavior and contribute to PNES. It can be done individually or in a group setting.
Mindfulness Based Psychotherapy
Mindfulness therapy generally involves group sessions where a person learns meditation techniques and basic principles of thinking and understanding. Mindfulness based psychotherapy:
- Addresses the relationship between the way a person thinks and the way they feel
- Helps people break away from negative thought patterns and behaviors, including those which may lead to PNES.
- Often includes “homework” for practicing the techniques learned in group sessions individually
Family Therapy
Family therapy can be used as an add-on option for families of children or adolescents with PNES. It can help a family through a difficult period, a transition, or mental or behavioral health problems.
Family therapy for PNES also includes separate counseling with parents. They can learn to identify:
- PNES triggers
- Coping strategies
- Ways to help their child improve and manage symptoms in different settings
Neurobehavioral Therapy
This is an evidence-based psychotherapy used around the world. It has been used for epilepsy, PNES, and other neuropsychiatric conditions.
Neurobehavioral therapy:
- Uses elements of various psychotherapies to treat seizures and commonly occurring symptoms
- Has been shown to reduce seizures, depression, and anxiety and improve quality of life in clinical trials with civilians and veterans
- Is delivered via a workbook, Taking Control of Your Seizures: Workbook, with a seizure counselor
What Is the Outlook In PNES?
Once there is a diagnosis of PNES, treatment and improvement vary by person. It is important to note:
- Between 20 and 50% of people stop having PNES once the diagnosis is reached and without any specific treatment.
- People receiving psychological treatments can work with their mental health provider to monitor changes in the frequency, duration or intensity of PNES symptoms. Keeping track of progress will help you understand if therapy is helping.
- Research shows improvement in PNES after three months of psychological therapy.
- Ongoing research continues to study new therapies for people who do not improve (about 1 in 4 people) with currently available treatment options.
Some factors that may predict a higher chance PNES will stop after diagnosis include:
- PNES in children in adolescence
- A person only having a brief history of PNES
- A person having a psychiatric disorder that is considered to have minimal or “mild” symptoms. People with severe symptoms face greater challenges.
- Open configuration options
How to Deal with the Stigma Associated with Psychiatric Disorders?
Although common, PNES is an uncomfortable topic for both patients and doctors. Understandably, many people's first reactions upon hearing they have PNES, and not epilepsy, is one of disbelief, denial, and confusion. Mental health issues often come with highly stigmatized labels. These stigmas are embedded in our language and even more deeply in our unconscious belief system.
“PNES is a real condition that arises in response to real stressors. These seizures are not consciously produced and are not the patient’s fault", says Dr. Benbadis. Many people diagnosed with PNES are victims of trauma. Their recovery from trauma and seizures depends largely on overcoming stigma and getting treatment.
Resources and References:
References
- Benbadis SR, A spell in the epilepsy clinic and a history of "chronic pain" or "fibromyalgia" independently predict a diagnosis of psychogenic seizures. Epilepsy Behav 2005(6):264-265.
- Benbadis SR, The problem of psychogenic symptoms: is the psychiatric community in denial? Epilepsy Behav 2005(6): 9-14.
Resources
Epilepsy Centers
Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.
Epilepsy Medication
Find in-depth information on anti-seizure medications so you know what to ask your doctor.
Epilepsy and Seizures Helpline
Call our Epilepsy and Seizures Helpline and talk with an epilepsy information specialist or submit a question online.
Tools & Resources
Get information, tips, and more to help you manage your epilepsy.
Related Stories
Press Releases
New Podcast Series Highlights Innovation, Advocacy, and Community Impact at the Epilepsy Foundation of America
Read Story Press Releases
113 Epilepsy Organizations Unite to Express Concerns about Leadership Change at the National Institute of Neurological Disorders and Stroke
Read Story