• Adult PNES - Information for Patients and Families
• Pediatric PNES - Information for Parents
• Pediatric PNES - Information for Children and Adolescents

Adult PNES - Information for Patients and Families

Gaston Baslet, M.D., Assistant Professor, University of Illinois at Chicago Department of Psychiatry; Rochelle Caplan, M.D., Professor, UCLA Semel Institute for Neuroscience and Human Behavior; and the Pediatric Subcommittee of the AES NES Task Force

What are psychogenic non-epileptic seizures (PNES)?

Psychogenic non-epileptic seizures (PNES) are attacks or events involving abnormal movements, unconsciousness, other experiences or a combination of these, very similar to epileptic seizures. Unlike epileptic seizures that result from sudden abnormal electrical discharges in the brain, PNES are not associated with abnormal brain electrical discharges. PNES are the expression of an emotional response linked to distressing events of which the patients may or may not be aware. Other names for PNES include pseudoseizures, dissociative seizures, non-epileptic attacks, non-epileptic events. Here, we will use the term “psychogenic non-epileptic seizures” (PNES) and we will refer to each episode of a PNES as an “event” or “attack.”

How common are PNES?

PNES are commonly mistaken as epilepsy. One in four to five patients sent to epilepsy centers for difficult-to-treat seizures are determined to have PNES instead of epilepsy, although the rate of PNES is much lower in an unselected community population. Some patients suffer from both epileptic seizures and PNES.

How are PNES diagnosed?

PNES are diagnosed by video-electroencephalogram (v-EEG) monitoring when a typical event is observed on video and no abnormal electrical discharges are detected. Usually, the patient is monitored for hours to days with a video camera and an EEG until a typical event occurs. It is important that an epileptologist or a neurologist with experience evaluating epilepsy observes the event and reads the EEG tracing so that all types of epilepsy can be ruled out. Some seizures originating deep in brain do not show EEG changes even during a seizure, so clinical judgment must be used, not just the EEG findings.

If I had an ‘abnormal EEG’ in the past, does that mean that I have epilepsy and I do not have PNES?

A past ‘abnormal’ EEG can mean different things and that is why it is important that your epileptologist (a neurologist who specializes in epilepsy) takes a look at those past studies when available. Some patients might have been misdiagnosed as having epilepsy for years and others might have a combination of epilepsy and PNES. Sorting out these questions is part of the evaluation done by your epileptologist.

What causes PNES?

The word ‘psychogenic’ in PNES implies that the attacks are a way that the body and mind respond to emotionally relevant and often stressful situations. The exact way that this happens in the brain is not well-understood, but studies do indicate that PNES patients have a different way of processing emotionally relevant information compared to healthy volunteers. Some patients are well-aware that they have been struggling with emotional difficulties and have seen mental health professionals for psychiatric problems such as depression, anxiety, problems with relationships, history of childhood abuse, etc. Other individuals with PNES have never seen a mental health professional and they cannot identify any specific source of stress in their lives. Not uncommonly, individuals with PNES also suffer from other physical illnesses including headaches, pain syndromes, etc. or might have some concerns about their memory, attention, and intellectual skills.

It is important for patients and family members to understand that the fact that these events are not due to epileptic discharges in the brain and are psychogenic in origin does not mean that they are voluntarily or purposefully fabricated.

How can I get treated for this condition and how soon am I going to get better?

After the diagnosis is well-established by your epileptologist, an evaluation by a mental health professional (e.g. psychiatrist, psychologist) with experience in PNES is essential to understand the psychological context in which the PNES have occurred so that a treatment plan can be discussed and implemented.

Treatment duration and success will depend on a number of factors and you should discuss this with the mental health professional performing the initial mental health evaluation.

What does the treatment consist of and who can conduct this treatment?

There are studies showing that some forms of time-limited psychotherapy, specifically cognitive-behavioral therapy (CBT), can reduce the frequency of PNES at the same time that it reduces symptoms of depression, anxiety and other emotional disturbances. These studies usually involve 12 sessions of CBT, but the number of sessions can vary significantly in each case. In addition to psychotherapy, treatment with psychiatric medications might be necessary to treat accompanying psychiatric conditions (such as depression, anxiety, post-traumatic stress disorder).

It is preferable that the mental health professionals providing this treatment, psychiatrists, psychologists and/or social workers, be familiar with PNES. So you should ask the epileptologist or neurologist making the diagnosis for names of mental health professionals they would recommend in your area. If I do not have epilepsy, can I stop taking my anti-epileptic medications? This will differ in each case and needs to be carefully discussed with your epileptologist or neurologist. In the case that it is clear that you do not have epilepsy and do not need to take anti-epileptic medications, you should follow the instructions given by your epileptologist or neurologist and should never stop these medications without their supervision or guidance. Some of the antiepileptic medicines also are useful for stabilizing mood.

Can I drive if I have PNES?

This will depend on the symptoms that occur during your events and you should discuss this with your health care provider (neurologist or psychiatrist) before you continue or resume driving. For example, if the event presents with no ‘warning signs’ and/or there is loss of consciousness or lack of motor control during the attack, it is highly recommended that you do not drive until a reasonable period of event freedom is achieved (varying in different states from 3-12 months).

Pediatric PNES - Information for Parents

What are PNES?

These are episodes in which children and adolescents have seizure-like behaviors, such as loss of control or atypical movements, decreased awareness, or unusual behaviors and sensations. Unlike epilepsy, these episodes are not associated with abnormal electrical activity on EEG. In contrast, stress and emotional causes play an important role in PNES. It is important for parents to know that children with these non-epileptic seizures, whether they have epilepsy or not are not, are not purposefully deceiving their parents or others by “faking” seizures.

Although relatively frequent, PNES are difficult to diagnose and it might take a long time to reach the correct diagnosis. Unrecognized and untreated, PNES does not get cured, and can lead to long-term disability. Therefore, it is important that parents be aware of this disorder, seek out professionals with experience in PNES, and ensure that PNES does not go undiagnosed in their children.

Why do children develop PNES?

The stress children experience in their daily lives can involve a wide range of problems from difficulties with school work, peers or within the family; unidentified or untreated depression, anxiety, ADHD, and abuse (physical, sexual); and many other problems. Typically when stress occurs, children need to problem solve, often with the help of their parents, peers, or teachers, otherwise their stress increases. Sometimes, however, children may not talk with others feel that their problems are minimized or not understood by others, and that their problem solving efforts are unsuccessful.

As a result, they might become passive and try to avoid or ignore the problem or they become angry and irritated for what appears to be “no apparent cause.” However, these responses, whether passive or explosive, do not make the underlying problems go away, and the child’s stress level increases. In some cases, children try to communicate about these problems to their parents but not always successfully. In other cases, they do not talk to anyone about these problems. In ways that are still unclear to us, in some children increased emotional stress due to unsolved or poorly solved problems causes behaviors similar to seizures. From the child’s perspective, these non-epileptic seizures are really a cry for help, and indicate to us that the child is having difficulties that he/she is unable to solve.

So does my child have epilepsy, PNES, or both? How can I be sure?

A video-EEG recording of your child’s behavior during a typical seizure-like episode without epileptic abnormality on EEG suggests that your child is experiencing non-epileptic seizures, but some deep seizures do not show on an EEG recorded at the scalp.

Some children with epilepsy also develop PNES. When they have non-epileptic seizures, parents typically think there is a change in the nature of the child’s epileptic seizures and that the child’s seizures are getting worse, or have returned with a vengeance after having been well controlled. Non-epileptic seizures typically do not respond to increasing doses of antiepileptic drugs. Unaware of the behavioral causes for these seizure-like episodes, parents and physicians are often baffled by the child’s worsening condition and the lack of response to treatment.

The child is then treated with additional or higher doses of antiepileptic drugs which might cause tiredness, difficulties concentrating and doing schoolwork, as well as more missed school days. Increased emotionality with irritability, crying, exaggerated sensitivity, and temper tantrums due to the child being over medicated make it even more difficult for the child to adequately problem solve and catch up with the increasing work load due to school absences. Having so many “seizures” makes the child and parents very concerned and causes increased stress for both the child and family.

When should I begin to think of PNES?

Parents and physicians are usually unaware of the factors that are causing the child’s increasing stress. So, if there is a change in seizure control and in the nature of their child’s typical seizures, parents should consider that the child might have non-epileptic seizures, and discuss this with the child’s physician.

Who can help my child?

The first step is for your child to have a full neurological evaluation, including video-EEG monitoring, to determine if the episodes are non-epileptic seizures. The next step involves a comprehensive psychiatric and educational evaluation of your child to understand difficulties your child might perceive or experience in school with peers, at home, and how he/she deals with them. These assessments will help find out if your child has psychiatric diagnoses, such as anxiety, depression, or ADHD, and also determine your child’s academic strengths and relative weaknesses. Working with a team that includes your child’s epileptologist or pediatric neurologist, a mental health clinician (child psychiatrist, psychologist, neuropsychologist, educational psychologist, or social worker), the school, and your child’s primary physician is essential for the treatment of this condition.

The team will put together the findings of the comprehensive epilepsy, psychiatric, and educational testing and decide on the best treatment approach for your child, how to get your child back to school, and decrease antiepileptic drugs your child might not need. Treatment usually includes individual therapy to help your child identify his/her difficulties and learn how to problem solve. In addition, your child might need medication to treat depression, anxiety, or problems with attention. Family therapy with you and your husband (partner) and, if necessary, your child’s siblings, will help you support and encourage your child’s efforts at problem solving and coping with life’s difficulties.

Pediatric PNES) - Information for Children and Adolescents

What are PNES?

PNES are “attacks” or “spells” that look like seizures. During attacks, children might not know what is going on around them. They might also feel that parts of their body are out of control and have unusual movements or feelings. These attacks do not mean that something is wrong on the EEG (brain waves) like in epilepsy. But, they are real, not fake, and can be scary for children.

Why do children have PNES?

For some children who are having difficulties with schoolwork, their family, or with friends, the stress of these problems builds up in their bodies and causes these attacks. Sometimes children are unaware they are having these difficulties. Other children are aware of problems with school, friends, or sports, and feel that no one can help fix the problems. This causes a lot of tension in their bodies and it spills over and out in the form of attacks that look like seizures.

So do I also have epilepsy? How can I be sure?

A medical test called video-EEG can answer this question. A child gets buttons attached to wires (electrodes) on the head like a regular EEG that is also hooked up to a video-camera. So during an attack recorded by the video, the doctor can see what happens on EEG. If the EEG does not show the type of activity found in epilepsy, this might mean that the attacks are PNES. Since some children with epilepsy can also get PNES, the video-EEG will help the doctor know which attacks are from epilepsy and which are from PNES.

Who can make this go away?

Having PNES is difficult because children miss school, might not be able to hang out with their friends, and do the things they usually like to do, and they might take a lot of medication. Their parents and family get very worried and friends might sometimes be scared by the attacks. So most children want these attacks to stop.

Because having problems and stress might be important in PNES, children should speak to a child psychiatrist who can help them figure out what are the things that are stressing them out. This is the first step to help find out what needs to be changed, whether these are problems with schoolwork, friends, the family, sports, or anything else. Then, it is important to get help to understand how to solve these problems by seeing a therapist. At the same time parents need to get help from the therapist so they can know how to help their children. It is important to continue to work with the pediatric neurologist to stop medications for epilepsy that are not needed. The doctors or therapists also work together with children’s teachers and school psychologists. This is important for children with learning difficulties.

Most of the time, treatment can help stop these attacks, get you back to your usual activities, and feel much better about yourself.