Psychogenic Non-Epileptic Seizures: A Reflection

Posted: March 14, 2019 by Ty in Musings, Spirituality
Tags: , , , , , ,

P-N-E-S.

What is it?

Simply put, it is an acronym that stands for Psychogenic Non-Epileptic Seizures. It is 25% of the seizure cases that the Calgary Epilepsy Program sees. It can go un(mis)diagnosed (meaning you are being treated for Epilepsy) on average between 7-20 years. It is essentially what comes with Epilepsy without the Epileptic electrical brain activity. It is a convergence disorder, that 90% of the time is associated with Post Traumatic Stress Disorder. There is a freedom, and a fear in knowing what it is, the freedom is that you do not need the harsh anti-convulsion or anti-epileptic medications (unless it is co-occuring with Epilepsy), the fear is that treatment is a journey within your own self.

Image result for psychogenic nonepileptic seizures by myersLorna Myers Ph.D (2014) Psychogenic Non-Epileptic Seizures: A Guide is an exploration of the basics. It aptly points out that in one point and time in history these were known as pseudo or hysterical seizures (and even demonic possession), which is a misnomer as they are not false but the physiology of the person experiencing them they are real. Though I must admit watching a serial killer documentary with the wife when the Cannibal stated that it was pseudo-seizures, did cause me to almost do a spit take. I digress however.

I was a lucky one, it only took about 2ish years to diagnosis, and this was after finally getting the gold standard of testing, the observed EEG in hospital with audio and video. That was in September 2018, and in February 2019 I entered into the psycho-therapeutic treatment. It is two pronged, as there is also going to be in depth intervention for PTSD later. Myers does allude that PTSD treatment should come before PNES treatment. I wrestle with that, because if one cannot control or mitigate the dissociative and/or convergent episodes, how are they going to root out the memory ingrained pain to heal appropriately. To each their own, but this inversed path appears to be working.

Myers text for the laity (or patient) walks you through treatment options. That range from Talk to CBT to DBT to exposure therapy, each step of the way pointing out the need for this to be happening with an appropriately trained mental health practitioner in PNES. She points out the role a psychiatrist, psychologist (Ph.D.) and possibly, social worker would play in each role.

In a typical American based fashion she gives a nod to continue working with adjustments while working through the PNES treatment (if possible is a side note). What is needed though, in my opinion, is a grasp on something that gives meaning. Myers notes if one cannot work (as in my case due to the PTSD being linked to the work) then to find meaning in life elsewhere…for me it has been my family, my writing, and a renewal in my reading, and a safe zone in our home church.

The walk will also take you through the role Anger, Depression and Anxiety play in exacerbating the PNES, but also that in the case of Anxiety there can be other psychogenic effects to your system as a whole. It was a good notation, as the wife and I had noticed an increase in frustration and anger over this time. In the complementary treatment section it explores the pros-cons on one’s health of herbal and health supplements, touches on spiritual practice, yoga and Tai-Chi as being beneficial to centering, grounding, and releasing of stress tensions. Basics around healthy diet, good sleep hygiene, hydration as well in the healthy body section. Myers shares some online resources she has created as well.

It is a beginning point of a journey, that encourages self-exploration. Not everything everyone will suggest will work for you. Part of the journey of understanding the triggers and precursors to events, working to interrupt and cessate the events, is discovering what works for you.

It is introspective work. It goes deep, because like Gremlins and Saboteurs in life coaching, the episodes have a benefit to your system. For me it is about efficiency is a word that keeps coming through. I strove so hard to protect my friends and family from vicarious trauma of the work I did, it became so internalized that when something went awry, the efficient way for my body to expel the crud is through convulsion.

There is a fear of what lurks beneath, but also a fear that is created within myself and my family as a result of the episodes. In a way, the efficiency my biological system created to protect me, has created a system that can traumatize, doing the direct counter of what I was seeking to avoid.

Even though it may feel on the journey like there was a freedom, it was a false freedom, for instead of integrating and processing the pain. As the glue that held teams together, that ensured everyone was taken care of, in the moments when other crisis would arise I would compartmentalize to come back later, something was missed within my own soul.

The true freedom, is going to come by confronting the fear, to have an new release. A new lease on life. It is easy to jump ahead to what comes after, but in the jumping ahead excitement and endorphins can continue to mask the sorrow, can continue to suppress and compress the pain. It is being present in the journey, wrestling with the pain, integrating it into the pilgrimage of my whole self…

For the new-best me, awaits on the other end for my soulmate, and kids…and for me.

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