The trauma of epilepsy
For those of us well-versed in epilepsy, the connection between seizures and their psychological effects - trauma in particular - is a no-brainer (pun intended). However, the lack of available providers and treatments is all at once infuriating and devastating. This is a topic that comes up all too often during my interviews for CURE Epilepsy’s Seizing Life podcast. It is also one that this week’s guest blogger, Yarrow Rubin beautifully describes in a powerful essay. - KC
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“I thought you were dead.” my boyfriend said, upon finding me lying on the floor, my face in a pool of blood, after my first seizure.
“You really look like you're dying.” my teenage son said after he saw me having a tonic clonic seizure.
Waking up, again, to EMTs looming over me, no idea why or where I am.
“You need an MRI to see if you have a brain tumor.”
“No brain tumor, but there is some scar tissue.”
28 years later, “Oh, that scar tissue is actually a benign tumor, but we don't know if it is the cause of your seizures.”
“By the way there’s this thing called Sudden Unexplained Death in Epilepsy (SUDEP) but you’re not at risk… oh, actually you are at risk,,, actually we really don’t know.”
It’s a lucid dream: I’m seizing, I feel the strike of electricity and it streaks across my being. I try to scream but can’t, finally I awake in absolute terror.
It sounds traumatic doesn’t it? It is, for me, my family and friends, especially those who’ve witnessed my seizures and their aftermath. It’s been 32 years since my first seizure. I’ve had about 40 tonic clonic seizures, one focal aware seizure and countless auras. Seizure recovery is never easy and as I’ve aged my post seizure recovery has gotten harder. I experience far more neuropsychological symptoms than I did in my younger years and they last much longer, up to a few months.
When I realized these symptoms have a lot in common with PTSD I started to wonder if there was a connection. I requested a neuropsychological evaluation and later a psychiatric assessment as well. The results for both were similar: I did not fill the criteria for PTSD or depression and showed no signs of cognitive decline (although, with no prior NP exam history I’m not sure how they could know for sure), I was diagnosed with “mild anxiety” though and talk therapy and stress relief were recommended. I requested counseling with a mental health provider versed in epilepsy from my research facility, a national epilepsy charity and our local epilepsy organization: I have yet to find one.
There have been a few materials that I’ve found helpful including the workbook “Taking Control of Your Seizures”, especially the chapter titled “Other Symptoms Associated With Seizures.” Just seeing the acknowledgement of the myriad of symptoms epileptics experience in addition to seizures was consoling. Though its insistence that people with epilepsy work through it with a “seizure counselor” when I have never heard of, been offered or seen any mention of a seizure counselor anywhere else is puzzling. Another is “The Collected Schizophrenias” essays by Esmé Weijun Wang which gave me a new understanding of my neuropsychological experiences and also established a connection to people with psychiatric diagnoses.
Over the years, I’ve asked my neurologists, specialists and researchers why there aren’t medications or treatments for post seizure recovery or more research into this. Their answers have basically been a shrug: it’s just too big, too much of a mystery, or there aren’t enough research funds.
So onward I’ve gone, walking my neurologic tightrope, while also navigating these newer psychological symptoms. However, it turns out there has been recent research into PTSD and epilepsy and the answer is yes, there is a “distinct profile of PTSD symptoms…in which PTSD symptoms occurred with regards to the traumagenic effect of a specific seizure or/and of the repeated occurrence of seizures.” (1)
I’ve learned the hard way, as many of my fellow epileptics have, that our classic and common PTSD symptoms of anxiety, “fear conditioning,” avoidance and hyper-vigilance lower our seizure thresholds. This can become a negative feedback loop, affecting not only our seizure frequency but also our daily quality of life, sleep patterns, overall mental health and relationships.
So, where do we go from here? How long until epilepsy patients experiencing PTSD symptoms get treatments specific to us from our neurologists and mental health providers? Yes, some high-level epilepsy centers do have integrated neuropsychological services, but these are few and far between. I have seen an increase in national programs to help epilepsy patients learn self-management, stress relief, etc., but have yet to find one for which I qualify.
One shining light has been learning about Dr. Andres Kanner who is quadruple boarded in Neurology, Psychiatry, Clinical Neurophysiology and Epilepsy and has authored hundreds of papers, book chapters and books. Kelly also interviewed him for Cure’s Seizing Life podcast in 2020, discussing epilepsy and mental health. In a recent ILAE Sharp Waves podcast Dr. Kanner describes his frustration with the separation of the fields of psychiatry and neurology, as they both deal with the brain. He speaks to the fact that this lack of interaction between neurologists and psychiatrists is a detriment to patients, and I’ve suffered because of this.
I’m optimistic epilepsy treatment will continue to evolve and be more expansive. That in the future, neuroscience fields will merge, offering us multi-disciplinary treatment options. As Dr. Kanner attests, it should be the standard of care for all people newly diagnosed with epilepsy to be offered baseline neuropsychological evaluations and mental health services. I’m endeavoring to advocate for these advances for myself and my epilepsy siblings worldwide. All while continuing in my quest to find a mental health provider with knowledge of epilepsy, or at least an enthusiastic willingness to learn.
You can connect with Yarrow directly at:
Twitter:
https://twitter.com/yarrowsr
Instagram:
https://www.instagram.com/yarrow_s_r/
Citations:
1. Post-traumatic stress disorder (PTSD) in patients with epilepsy: https://www.sciencedirect.com/science/article/abs/pii/S1525505021003176
2. Postepileptic seizure PTSD: A very rare psychiatric condition in patients with epilepsy - 2017: https://pubmed.ncbi.nlm.nih.gov/29122493/
3. The Relationship Between Epilepsy and Anxiety Disorders - 2019: https://pubmed.ncbi.nlm.nih.gov/31037466/
4. The impact of self-efficacy, alexithymia and multiple traumas on posttraumatic stress disorder and psychiatric co-morbidity following epileptic seizures: a moderated mediation analysis - 2013: https://pubmed.ncbi.nlm.nih.gov/23978734/
5. Epilepsy as a spectrum disorder: Implications from novel clinical and basic neuroscience: https://onlinelibrary.wiley.com/doi/full/10.1111/j.1528-1167.2010.02904.x
6. “Taking Control of Your Seizures” workbook by Joel M. Reiter, Donna Andrews, Charlotte Reiter, W. Curt LaFrance, Jr.
7 ILAE Epigraph Vol. 25 Issue 1, Winter 2023, Sharp Waves podcast Dr. Andres Kanner: A career in the psychiatric aspects of epilepsy: https://www.ilae.org/journals/epigraph/epigraph-vol-25-issue-1-winter-2023/dr-andres-kanner-a-career-in-the-psychiatric-aspects-of-epilepsy
8. CURE Epilepsy Seizing Life Podcast: Epilepsy and Mental Health: What You Should Know: https://www.cureepilepsy.org/seizing-life/epilepsy-and-mental-health-what-you-should-know/
9. “Psychiatric Issues in Epilepsy A Practical Guide to Diagnosis & Treatment” by Alan B Ettinger, Andres M Kanner
10. Psychiatric comorbidities in new onset epilepsy: Should they be always Investigated?: https://www.seizure-journal.com/article/S1059-1311(17)30267-4/pdf
11. Andres Kanner: shining light on the behavioral aspects of epilepsy: https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(12)70279-
