I’ve typically seen it starting in teenagers although literature suggest onset in 3rd decade predominates. It is female predominant but I’ve seen it a young boy (12-13) and a guy in his late teens/early 20’s, but otherwise in women.
My interface may have a certain population bias as I work in an ED, but these most usually resemble seizures, and that is how they are initially treated, since PNES is a diagnosis of exclusion, i.e., once you rule out seizures or syncope, and unfortunately, this can take some time. People will come to the ER for the first time with a suspected seizure. Family is obviously nervous. Evaluation does not show anything substantial and patient is discharged home to neurologic follow up. it should be noted that most people are not admitted for a first time seizure. It is difficult to get into see a neurologist, sometimes taking months and getting an MRI and the appropriate EEG studies (sometimes requiring sleep deprived EEG’s), also takes quite a bit of time. Once one has a second seizure, also usually seen in the ER by a different doctor this time, medications will typically be started. As someone else in this thread has noted, failure to respond to anti-seizure medications can give a clue into an needing to consider an alternative diagnosis.
After multiple ED visits, the idea of non-epileptic seizures becomes raised. Unfortunately, I have witnessed many doctors and nurses being somewhat biased about the involuntary nature of these episodes and call these “fake seizures“ or “faking it“. Alternatively, many parents do not want to consider the possibility of this being a primarily psychological problem, they need something to be organically wrong with their child. It is difficult to try to sit down with a parent and explain that these episodes are often associated with deep trauma at a young age and our best addressed by a psychiatrist.
It is a difficult and problematic diagnosis, not nearly as straightforward as seizures, and the difficulty in identifying and managing PNES is not primarily gender related. It does, however, fall into that category of wastebasket diagnoses such as fibromyalgia and chronic fatigue syndrome that primary physicians and ER physicians have very little patience with and can result in patients being treated disrespectfully.
A little more info for you:
●Psychogenic nonepileptic seizures (PNES) are events thought to have mainly psychologic origins. PNES include a variety of clinical manifestations, some of which are suggestive, although not independently diagnostic, in distinguishing PNES from other differential diagnoses. The diagnosis of PNES is generally established by video-electroencephalography (EEG) monitoring. If an event is clinically compatible with PNES, then the diagnosis is best confirmed by the observation of a normal awake EEG before, during, and after
●The diagnosis of PNES, once established, should be presented to patients and their families in a supportive, nonjudgmental fashion.
●In patients with a diagnosis of PNES only (ie, no epilepsy), antiseizure medications should be gradually withdrawn, with appropriate supervision.
●Neurologic follow-up should be maintained after a diagnosis of PNES to monitor the safe withdrawal of antiseizure medications, answer patient questions, reinvestigate if new events appear.
●There is little evidence for any treatment for PNES. Psychological intervention is mainly used, including CBT approaches. However, evidence from a randomized trial found no benefit of CBT.
●Pharmacotherapy is not effective for PNES but should be used as indicated to treat psychiatric comorbidity.
●The prognosis for patients with PNES is guarded. Many patients will continue to have PNES after diagnosis and treatment. Even patients whose PNES cease may have substantial psychiatric morbidity and long-term functional limitations.
A little more on psychotherapy:
Psychotherapy — Although some patients stop having events on being given the diagnosis of PNES, many continue to do so and require treatment. Psychotherapies are the mainstay of treatment, delivered by a psychologist or psychiatrist.
●Cognitive behavioral therapy – Cognitive behavioral therapy (CBT) is a widely used brief psychosocial intervention that is composed of a variety of therapeutic approaches. Observational case series and small randomized trials suggested that CBT might be helpful in reducing seizures and improving psychosocial functioning. However, a reasonably large randomized trial of 368 patients found that a PNES-specific CBT approach was not effective in reducing event frequency or severity. Some secondary outcomes, such as quality of life, psychosocial functioning, and others were significantly better in the treatment arm, suggesting that CBT may nonetheless have some non-seizure-specific benefits.
●Mindfulness-based therapy – Mindfulness-based therapy (MBT) may be beneficial for patients who have PNES, but data are sparse. Basic elements of mindfulness meditation include self-regulation of attention and taking a nonjudgmental stance towards one's experience. One observational study enrolled 49 patients with PNES in a 12-session MBT program. At study conclusion, the 12-session program was completed by 26 patients; in this group, a 50 percent or greater reduction in PNES frequency was self-reported by 70 percent, and remission of PNES was reported by 50 percent. The high drop-out rate limits the strength of these findings.
●Traditional psychotherapy – Traditional psychotherapy has been used in patients with PNES with mixed success. Group therapy sessions also employ traditional psychodynamic or psychoeducational techniques, and small observational studies have reported decreased episode frequency and/or improvement in psychosocial comorbidities in some patients with PNES. The high prevalence of family problems in patients with PNES suggests that family-related interventions may be useful, but these have not been systematically studied.
●Psychodynamic interpersonal therapy – Psychodynamic interpersonal therapy is an alternative form of psychotherapy. In a case series of 47 patients with PNES, this intervention was associated with seizure remission in 25 percent and a >50 percent seizure reduction in 40 percent. Response to psychiatric or psychological interventions is variable. Interventions are often individualized according to the underlying psychiatric diagnosis (or psychological formulation). We have used a "toolbox" approach, whereby initial triage identifies issues that are thought to be causative, and a therapy type or types is chosen accordingly. As an example, when social factors predominate in causing or maintaining PNES, then family therapy, interpersonal therapy, or social interventions may be used, whereas where reaction to past trauma is prominent, mindfulness, counseling, and acceptance and commitment therapy might be used. Whatever approach is taken, treatment recommendations are mostly based upon clinical experience and the results of observational studies; there have been few randomized treatment trials for PNES.
The evaluation of talking therapies (ie, psychotherapies) in PNES is challenging. Patients tend not to agree to take part in trials and may comply poorly with trial protocols. Trial design can also be challenging: the choice of control intervention can be difficult, and the opportunity for blinding is limited. The psychiatric conditions associated with or underlying PNES are variable, and the relevance of subgroup issues to treatment choice is not well understood. All these factors limit the quantity and quality of evidence available for evaluation of therapies.
Barriers to effective treatment of PNES patients also include unwillingness to accept a psychological diagnosis or attend therapy, poor compliance, financial and insurance-related limitations, and difficulty finding psychiatric and psychological clinicians who are experienced and comfortable with PNES.
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