Imagine what it’s like to suffer from seizures that can strike anytime, anywhere. Imagine losing your driver’s license, job and social life because of seizures that seem to be uncontrollable. Imagine the emotional turmoil that ensues as these seizures take over more and more of what you once enjoyed, considered necessary or maybe even took for granted.
Now imagine your neurologist or epileptologist telling you there is no medical reason for your condition. The seizures have a psychological origin and are your brain’s way of coping with emotional stress. Unlike what your primary care physician told you, your condition isn’t epilepsy, meaning all those drugs you’re taking to treat epilepsy are absolutely worthless.
Finally, imagine dealing with the skepticism of your family and friends now that they know these seizures are “all in your head — the doctor even said so.” This is a snapshot of what it is like for people who suffer from psychogenic nonepileptic seizures (PNES).
My first case
It was a Tuesday afternoon at my clinic, one of the week’s two “walk-in” days in which both regular and new clients could see a clinician without an appointment. On this particular day, a young woman in her 20s (I’ll call her Charleen) walked in, trembling and barely able to speak. All our clinicians were busy, but the receptionist told her that if she had a seat, someone would be with her shortly. The front office staff said she seemed slightly disoriented and not fully able to explain why she was in our office or who had referred her.
After I finished another client’s session, I walked into the waiting room and introduced myself. Charleen made no eye contact, and about a minute into our conversation, she told me she had to leave and return home to “take her dogs out.” She assured me that she would be back, however. Later that day, she called the office and made an appointment with me for the following week.
During that appointment, Charleen told me she had been suffering from PNES and anxiety, and that a local mental health agency had referred her for those conditions. She had left so abruptly the day she walked in because she was on the verge of having a seizure episode and didn’t want to have it in my office. She then tearfully proceeded to tell me about her life, and losses, with PNES, which included the experiences mentioned at the beginning of this article.
Although I was aware of PNES, I had never worked with anyone diagnosed with the condition. With more than 20 years of experience as a licensed counselor, however, I had extensive experience with clients struggling with anxiety. There were no other places that worked with PNES within a reasonable distance for Charleen, so I agreed to become her counselor. I began reading everything I could get my hands on related to PNES, starting with Psychogenic Non-epileptic Seizures: A Guide, by Lorna Myers, and even attended an online training given by Myers.
My work with Charleen progressed nicely, and I began to contact other referral sources in my area for more PNES cases. The treatments I used were bringing impressive results to a condition that, as I found out later, many clinicians feared. As the successes continued, I contacted Myers, director of the PNES Treatment Program and the Clinical Neuropsychology Program at the Northeast Regional Epilepsy Group in New York, to be placed on the national referral registry for PNES. Given the dearth of providers for PNES, I began getting referrals from other states. My zeal for working with PNES sufferers has continued to grow since that time.
Although the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) does not include the acronym PNES, it does describe the condition as a conversion disorder (functional neurological symptom disorder) “with attacks or seizures” (F44.5). Professionals treating the condition most often use the acronym PNES, but NEAD (nonepileptic attack disorder) is also used on occasion.
The DSM-5 diagnostic criteria for psychogenic seizures include “altered voluntary motor or sensory function” that do not have a medical or neurological origin and are “not better explained by another medical or mental disorder” and that cause “clinically significant distress” in all facets of life. The term pseudo-seizures is often used to describe this condition. This is inaccurate, however, because there is nothing fake (or pseudo) about these seizures. PNES is not the same as malingering (looking for secondary gain) or factitious disorder (an attraction to being ill). Individuals who experience PNES subjectively believe and feel that they do not have control over their condition.
Several tests can help rule out seizures with a medical origin. The gold standard for diagnosing PNES, however, is the video EEG, a test that measures brain waves. During a video EEG, the person is admitted to an inpatient facility and observed for an extended period of time (generally multiple days). Whenever a seizure occurs, the brain’s electrical activity is analyzed. When a seizure has a medical origin, the EEG will display abnormal brain wave activity. In the case of PNES, brain wave activity remains unchanged during the seizure. Currently, this is the only way to reliably diagnose PNES.
In some cases, individuals who suffer from psychogenic seizures may also have epilepsy or experience other medically oriented seizures. In their paper “Defining psychogenic non-epileptic seizures,” Selim Benbadis and Valerie Kelley write that “about 10 percent of patients with PNES also have epilepsy.”
Traumatic experiences and treatment options
In most cases, sufferers of psychogenic seizures have endured at least one significant traumatic experience in their past, often including sexual victimization. Whatever the traumatic experience may be, psychogenic seizures are believed to serve as a psychological shut-off valve of sorts when sufferers become emotionally distressed. The stress may be due to external circumstances (e.g., social anxiety, job stress) or internal stimuli (e.g., flashbacks from traumatic experiences, hallucinations). It is common for PNES to occur comorbidly with other psychiatric conditions such as posttraumatic stress disorder (PTSD), dissociative disorders and anxiety disorders.
What can counselors do to help those suffering from psychogenic seizures? There are several treatment options to consider.
Psychoeducation: Psychoeducation is extremely important for those suffering from PNES because many of the clients who seek counseling do so only after years of unsuccessful treatment for epilepsy or other medically oriented conditions. They are typically referred to counseling after finally being successfully diagnosed by an epileptologist or neurologist but still may not have a proper understanding of how something that seems to have a medical origin is actually psychological in nature. Proper education for clients and their loved ones will help minimize the confusion and stigma that are often associated with this condition.
Journaling and mindful awareness: This phase of treatment involves clients learning two vital exercises: keeping a seizure journal and mindful awareness.
Before individuals become incapacitated by psychogenic seizures, they generally report a variety of prodromal symptoms, including trembling, headaches, dizziness and fatigue. The typical response one feels when a seizure is approaching is to become more anxious. This response is logical, especially considering the havoc and disruption the seizures have caused in the person’s life previously. However, an increase in stress is exactly what makes psychogenic seizures more likely to occur (stress and anxiety typically activate the seizure to begin with). Therefore, learning how to be mindful of prodromal symptoms is vital for the person to do what is necessary to avoid progression to a full-blown seizure — namely, by practicing anxiety and stress reduction.
Keeping a record (a journal) of seizure activity and each seizure’s antecedents will provide the client and counselor alike with vital information regarding when and where seizures are most likely to occur. This also keeps the client and counselor informed on therapeutic progress. Seeing one’s successes on paper can be inherently motivating and help foster the confidence that is so beneficial in combating anxiety and stress.
Anxiety/stress reduction: The next phase of treatment includes a variety of well-established and empirically verified interventions aimed at minimizing stress and reducing anxiety. This can be extremely effective in halting seizure progression.
I have found that a combination of deep breathing, progressive muscle relaxation and positive visualization can help reduce anxiety significantly. This intervention is the first choice for many of my clients suffering with PNES. Cognitive restructuring, including the recognition of stress-inducing schemata, identification of limited thought patterns and utilization of balancing thoughts that directly counter stress-inducing schemata, can also be effective in controlling anxiety and stress. Learning conflict resolution skills and receiving anger management counseling may be helpful for clients whose stress occurs more as anger. In short, by helping clients find the interventions that keep their stress levels low, counselors will give those who suffer with PNES the best chance to gain control over their seizures.
Biological considerations: Despite the psychological and emotional antecedents to psychogenic seizures, it is also important to consider physiological themes during treatment. Dietary factors are an element that deserves strong consideration in the treatment of nonepileptic seizures. When these issues affect seizure activity, they are referred to as physiogenic seizures.
I have found that many clients who suffer from psychogenic seizures also struggle with physiogenic seizures. For example, many PNES clients who regularly consume coffee will acknowledge that caffeine makes their seizures more likely and that reducing or eliminating its use is beneficial. This is most likely because caffeine stimulates the nervous system, increasing the possibility of elevated stress and anxiety levels and, thus, psychogenic seizures. In addition, avoiding foods with a high glycemic index will help to ensure that blood sugar levels remain stable. Unstable blood sugar levels can lead to hypoglycemia (low blood sugar), which, according to the Epilepsy Foundation, can trigger nonepileptic seizures.
Within the biological sphere of consideration, many patients find psychiatric medications to be beneficial. This is likely because the correct medications will help foster an emotional/mental state that reduces the likelihood of seizures occurring. It is important to note, however, that psychiatric medications do not treat the seizures directly. As is the case with other conditions, when a client with PNES is receiving treatment from a psychiatrist or other provider, it is very important for the counselor to keep open lines of communication with all said providers. In some cases, a change in psychiatric medications, or the addition of other medications, may result in an increase in seizure activity. It is necessary for the counselor to know what medication changes may have preceded the client’s seizure surge.
Working through trauma: A final phase to strongly consider when treating PNES is helping clients work through traumatic experiences. This phase of treatment can include a wide range of established interventions such as journaling, the empty chair, autogenic training, systematic desensitization and even family therapy, although many other effective interventions also exist for this stage. Myers suggests that the use of prolonged exposure may be helpful in the treatment of PTSD and may also be used to treat psychogenic seizures. At times, treatment will be more challenging depending on how many comorbid conditions are present.
In my experience, I have found that some clients will gain considerable control over their seizures before this final phase and will even opt out of this phase of treatment. As a client-centered clinician, I must respect a client’s choice to end therapy before this stage, although I always explain the potential benefits (and drawbacks) of engaging in this material.
As a clinician, I have found working with those suffering from PNES to be a very rewarding experience. It is a wonderful thing to watch these clients gain more confidence and hope as they slowly and methodically reduce their seizures and begin to regain what they lost while buried in the throes of their unfettered condition.
In their article “Psychogenic (non-epileptic) seizures: A guide for patients and families,” Selim Benbadis and Leanne Heriaud suggest that the competent treatment of PNES will result in the elimination of seizures in 60 to 70 percent of adults, and the results for children and adolescents may be even more impressive. The treatment of PNES is evolving as research continues. But the numerous empirically validated treatment options currently available to competent counselors can be just what PNES clients need to begin the journey of gaining hope and confidence, reducing seizure activity and taking back their lives from the grip of psychogenic seizures.
Jason Wright is a licensed professional counselor and licensed marriage and family therapist at the HumanKind Counseling Center in Lynchburg, Virginia. He holds a doctorate in counseling. Contact him at email@example.com.
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