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Psychogenic Non-Epileptic Seizures (PNES)

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MY SPECIALTIESPsychogenic Non-Epileptic Seizures (PNES)

Psychogenic non-epileptic seizures (PNES) is the general diagnosis that some people are now assigned when they have difficult to control seizures and the doctors believe that the “seizures” or “events” are caused by something “psychological”.

The doctors may accuse their patients of this, with or without, any basis. If this has happened to you, trust yourself. It is NEVER okay for a doctor to make that kind of an assessment without any basis, even if the doctor has a lot of experience and good intuition. Even a history of trauma, difficulty controlling seizures, and statistics are not enough for a doctor to make that kind of assessment.

Perhaps you have even had an abnormal EEG or VEEG that has documented your seizures, but for whatever reason the doctors are still questioning your symptoms or even calling your seizures something else like “complex migraines ^[1]” because you happen to have a common co-morbid neurological disorder called migraine. Alternatively, you may have been told that the study showed no abnormal activity at the time of the “seizure” or there were “no abnormalities” during the EEG or VEEG, which on its own does not indicate conclusively an episode of PNES ^{[2 ]}^[3].

It is a very scary and painful experience to be controlled by seizures, particularly when you have no memory of the seizures happening, but others have witnessed the seizures, or you find some detail that helps you realize that you have had seizures. Many in the medical and mental health professions lack so much understanding about epilepsy and psychogenic non-epileptic seizures (PNES) that they actually do more harm to their clients who are already suffering, than they do good.

Many of the so-called expert neurologists and other insurance-based mental health professionals will often tell you that your seizures are “psychological”, and that your seizures are unconscious and involuntary, but that your “prescription” to make the seizures stop is to receive the typical cognitive-behavioral therapy, which only focuses on changing specific thoughts and behaviors that are within your conscious awareness. That’s a major contradiction and it’s a clear indication that either he or she is only regurgitating what he or she has been told about PNES or he or she really believes that you are consciously aware and voluntarily able to stop your “psychological” seizures, which many don’t even like to use the term “seizures” as part of the PNES diagnosis. These are also the same professionals who only rely upon what they can “see” and therefore they have no faith.

a hand over another persons shoulder as this person seeks help for their Seizures

It’s no wonder if you believe that when your doctors are accusing you of faking your seizures!

If you have experienced the typical gaslighting that at least 1 in 4 people who are referred to an epilepsy center for difficult to control seizures do, you may feel like giving up and even question if it’s possible to be free of seizures. But there is hope!

One Third of Adults Who Experience Epilepsy Live with Uncontrollable Seizures ^[4]

If you have struggled with difficult to control seizures, you are not alone. The majority of people who experience seizures have to try more than one or two medications before they find the right one or combination of medications that result in no seizures and no side effects.

Even though new medications and treatment options are being developed regularly for people with epilepsy, more than 1 in 3 adults who experience epilepsy live with uncontrollable seizures. The CDC reported in 2015 that the number may be even more with as many as 56% of adults with epilepsy, or more than 3 Million adults with epilepsy, still have active seizures. The number of people who have psychogenic non-epileptic seizures (PNES) is not known, but PNES may account for as many as 5 to 20 percent of people diagnosed with epilepsy. The good news is that help is available. With the help and support from someone who knows and understands epilepsy and psychogenic non-epileptic seizures (PNES), you can choose not to be controlled by your seizures anymore.

Catholic Psychotherapy for Epilepsy and PNES Can Help You Reclaim Your Freedom

Whether you have epilepsy or PNES, if you are committed to the therapeutic process and willing to acknowledge the psychological impact of these disorders on your life, there’s a lot of hope that your life can get better.

In session, we will first work towards identifying and understanding any unconscious psychological conflicts that may need attention. Psychotherapy techniques can help you to put new language and meaning to things that you were not able to do on your own, but we will work together to help you to do so and to find new, healthier ways of seeing your situation and living so that you are no longer controlled by your seizures.

My approach is carefully designed to promote healing and wellness. I have been able to help a lot of clients overcome unconscious conflicts, some of which result in physical manifestations of their distress. Some clients who have had seizures that started in childhood or after a trauma, stop having seizures after their first session with me simply because I have been able to identify the original cause of their unconscious anger. But, they have continued treatment to experience psychological healing and ultimately stopped taking anti-epileptic drugs.

For my clients who continue to have uncontrolled seizures, my approach is the same. I focus on helping people overcome unconscious conflicts. In some cases, if there are identifiable triggers, we have focused on reducing or managing those as well so that these clients can experience more independence and wellness. With some clients, I have used teaching and reasoning as a therapeutic intervention so that they learn to use their voice to advocate for themselves, so they can be heard, understood, or recognized in a particular relationship, including with their doctor, which often produces change in other areas of their lives.

There are even some instances that even involve helping a person forgive doctors who have falsified their medical records at earlier times in their lives, in an effort to help them, disguise the fact that they have real seizures so that they can do things that they thought they wanted to do. But at the time they were not capable of doing and were not even capable of making their own decisions because of legal reasons or trauma. My approach to treatment is unique and specific based on the individualized needs of each and every client.

FAQ

What causes PNES?
How will you believe that my seizures are REAL if my own doctor doesn’t?

We don’t know, although it is believed that the cause is likely related to an unresolved unconscious conflict resulting from trauma. In other words, there’s likely some form of unresolved anger or resentment(s) that result in a type of conversion disorder, which is a physical manifestation of a psychological conflict(s) that are significant enough to lead to a psychiatric diagnosis.

The term that we now know as Psychogenic Non-Epileptic Seizures (PNES) was originally conceptualized by Sigmund Freud as “functional seizures”, which he called “hysteria” based on his work with women who had a history of abuse early in their lives. Jean-Martin Charcot explored it as a neurological process. Eighty percent of those with PNES in the general population are women. Twenty-five percent of those who are admitted to a seizure or epilepsy monitoring unit (SMU) or (EMU) are veterans ^[5].

While there are a small percentage of people who “fake” or “exaggerate” their seizures, the mere suggestion that psychotherapy can help you heal or be more responsive to your medical treatments does not imply that I believe you are one of them. My belief in psychotherapy being beneficial in treating epilepsy and psychogenic non-epileptic seizures (PNES) is based on research and experience in treating clients who have experienced one or both. I personally believe that it’s unconscionable that physicians and others make certain kinds of statements to their patients, particularly in regard to psychogenic non-epileptic seizures because of the mortality rates of those who have that diagnosis^{^[6]}.

As a psychotherapist, my role is to help you to experience relief from your symptoms. The connection to the mind and body is one that I think we have a lot of “growing pains” to do in the field, so I don’t focus on whether the symptom is “psychological”. Rather, I focus on healing from a psychological and spiritual aspect, specializing in trauma and forgiveness. I also use spiritual counsels for clients who are open to learning about how prayer, fasting, and a sincere study of the faith can help improve their psychological and spiritual health when they experience physical symptoms, whether we know the cause or not. If you also experience relief of physical symptoms, which are also known as somatic, I view that as a bonus!

Many of my clients have experienced that “bonus” and a general sense of wellness as part of their participation and completion of counseling or psychotherapy. In some cases, a good priest is involved to help with healing of seizures and other physical conditions as part of my work with them. Participation in the sacraments is a must, for those who want to experience the most beneficial effects of treatment. Prayers of deliverance are an absolute necessity, which are part of my treatment model and can be said on your own, daily. However, some people do require more.

NOTES

^[1] If any physician, healthcare provider, or mental health professional uses the term migraine in the plural, as in by adding an “s”, when talking with you about migraine, you can be sure that he or she is either not paying attention or is not well-educated on migraine. Migraine is a neurological disease, like epilepsy, and when it’s discussed with a patient or client by someone who is familiar with it, it’s discussed in the context of the number of days per month, whereas epilepsy has a separate term called “seizures” that can be used in plurals and it is normal to ask how many “seizures” a person has had in the last month, week, or even day depending on the frequency. You would likely look at your doctor with confusion if he or she were to ask you about the number of epilepsies you’ve had in the last month, as an example. It’s equally important that a professional doesn’t call migraine, migraines, and that if he or she would like to use it in the plural context that he or she call it what it is, a migraine attack or migraine attacks.

^[2] It’s important to note that you are relying upon people who are ‘interpreting’ the results of these EEGs and VEEGs. In many cases, these individuals are highly trained and interpret these results accurately. However, I am familiar with how medical records are not always documented accurately for a variety of reasons and this is not always done with bad intentions. Whitehead, K., Kane, N., Wardrope, A., Kandler, R., Reuber, M. (2017). Proposal for best practice in the use of video-EEG when psychogenic non-epileptic seizures are a possible diagnosis. Clinical Neurophysiology Practice, Vol. 2, Pgs. 130-139, ISSN 2467-981X, https://doi.org/10.1016/j.cnp.2017.06.002

^[3]Whitehead, K., Kane, N., Wardrope, A., Kandler, R., Reuber, M. (2017). Proposal for best practice in the use of video-EEG when psychogenic non-epileptic seizures are a possible diagnosis. Clinical Neurophysiology Practice, Vol. 2, Pgs. 130-139, ISSN 2467-981X, https://doi.org/10.1016/j.cnp.2017.06.002

^[4]Epilepsy Foundation (2023). Drug resistant epilepsy. Retrieved on January 18, 2023, from https://www.epilepsy.com/treatment/medicines/drug-resistant-epilepsy

^[5] Bajestan, S., LaFrance Jr., W. (2016). Clinical approaches to psychogenic nonepileptic seizures. Clinical Neuropsychiatry, 14(4), 422-431. American Psychiatric Association Publishing. https://doi.org/10.1176/appi.focus.20160020

^[6] Nightscales, R., McCartney, L., Auvrez, C., Tao, G., Barnard, S., Malpas, C., Perucca, P., McIntosh, A., Chen, Z., Sivathamboo, S., Ignatiadis, Jones, S., Adams, S., Cook, M., …, T. O’Brien (2020). Mortality in patients with psychogenic nonepileptic seizures. Neurology, 95(6), e643-e652; https://doi.org/10.1212/WNL.0000000000009855