Trauma Seizures: PNES and Disability Invisibility
When most people hear the word “seizure,” they immediately think of epilepsy, the most commonly known form of seizure activity to the common person on the street and the medical professional in the hospital. There are multiple types of seizures that are non-epileptic in nature, and I happen to have the less distinguished kind known as Psychogenic Non-Epileptic Seizures or PNES. But as science and medicine are quickly finding out, PNES is far more common in women with traumatic pasts than many would have believed.
It’s estimated that 70% of people with PNES are young women. However, the seizures do surface in older women as well as men, and are often linked with trauma. One recent study of U.S. veterans found that those with PNES were more likely than those with epilepsy to have a mood disorder, anxiety disorder, or post-traumatic stress disorder. — International League Against Epilepsy
Disability Invisibility
What is normal for a trauma survivor? Can you ever reach ‘normal’ again? Perhaps so, in the case of some PNES sufferers. There are some who go through therapy and see a great reduction in their seizures as well as an improvement in their day to day PTSD symptoms.
“In a 2014 study of adults with PNES, the frequency of seizures was reduced by 51.4% after a course of neurobehavioral therapy alone, and by 59.3% after treatment with NBT plus the antidepressant drug sertraline. In contrast, there was no significant reduction in PNES for patients who received sertraline alone without NBT, or neither of the two.” — US News
The ones who never see ‘normal’ again may run into things like being unable to drive, have a normal schedule, hold down a job, live lives like they did before the seizures set in, and more. They become chronic sufferers of a condition that does not care where you are or what you are doing. And the worst part? It is not well enough known by medical personnel to keep them from treating you like you are “faking” a seizure. Hell, it’s in the name, isn’t it?
Nonepileptic seizures are also commonly referred to as pseudoseizures. “Pseudo” is a Latin word meaning false, however, pseudoseizures are as real as epileptic seizures. They’re also sometimes called psychogenic nonepileptic seizures (PNES). Pseudoseizures are fairly common. — Healthline.com
It is not uncommon to have an invisible disability, after all there are whole sites, like The Mighty, devoted to people struggling with these sorts of things. What makes PNES stand out is that, like so many other “zebra” type conditions, it is hard to identify and harder to pin a diagnosis upon.
The EEG is usually normal in psychogenic cases, unless there is a separate, existing epilepsy or other brain disorder present, says Dr. Devinsky. And that makes the PNES diagnosis more difficult. — BrainandLife.org
Being believed is crucial to a PNES patient’s psyche and recovery path. We aren’t faking seizures and we aren’t looking for attention. Our brains have simply been through so much stress and trauma that this is the new coping mechanism being utilized to try and move on through our day. And it can really suck.
My Story
I was sitting on the toilet, as one does, after a normal day in the life. I had spent my 4 hours at the gym. Taken my daughter to and from her elementary school. Made dinner. Done some cleaning. Taken care of the pets. Run down my list of tasks and knocked out a bunch of errands. Typical stuff for a mom on the go. Getting to go pee without the fur people entourage was kind of nice, really. And then out of nowhere, my knee started to bounce. It wasn’t a big deal at first. It was just one of those involuntary movements you sometimes get when muscles are tired. But this tick got faster. By the time I had decided I needed help, I was watching both legs bounce on their own. I knew, without a shadow of a doubt, that the legs that had just run six miles at a six minute per mile pace that morning, would not move at my direction. I could not stand up. I was terrified.
That was in 2013. Here I am some 8 years later having gone from that night, to being bed ridden for two years, to getting some help, to sort of getting my life back together, to going to school. But there are definitely aspects to my life that will never go back to ‘normal.’ The likelihood of me getting back to the activity level I had then is pretty much gone. Why? Physical activity is a stressor that triggers seizures. I will likely never run my own business again. The stress level of running a business is simply more than I can handle and function with at the same time. The list goes on. For every positive I have created in my life, there is something I have had to learn to let go because I can no longer functionally have it and deal with PNES at the same time.
That is what living with a disability is all about. Learning to take this new aspect of you, blending it into all the other areas of your life, and then using your cookie press to get something new out of it. PNES. It has been a ride, and if you are trying to learn how to deal with it, I would encourage you to check out sites like PNES.Info or the Epilepsy Foundation. There are a host of resources, communities, and people just like you who are there to support you and your family as you move through this new experience.
If you are medical personnel and looking for more information, I would definitely encourage you to look into the Epilepsy Foundation’s site. And please, believe your patients. They have been through so much already.
Citations
“The Long Reach of Trauma: Psychogenic Seizures in Middle Age.” The Long Reach of Trauma: Psychogenic Seizures in Middle Age // International League Against Epilepsy, 2019, www.ilae.org/journals/epigraph/epigraph-vol-21-issue-2-spring-2019/the-long-reach-of-trauma-psychogenic-seizures-in-middle-age.
“The Mighty. Making Health about People.” The Mighty, 2020, themighty.com/.
Stump, Elizabeth. “Why Won’t People Talk About Psychogenic Nonepileptic Seizures?” Brain and Life Magazine — Trusted by Neurologists, 2008, www.brainandlife.org/articles/the-seizures-no-one-wants-to-talk-about/.
“The Truth about Psychogenic Nonepileptic Seizures.” Epilepsy Foundation, www.epilepsy.com/article/2014/3/truth-about-psychogenic-nonepileptic-seizures.
Wyllie, Elaine, and Becky Tilahun. “Counseling for People With Nonepileptic Seizures.” U.S. News & World Report, U.S. News & World Report, 2020, health.usnews.com/health-care/for-better/articles/counseling-for-people-with-nonepileptic-seizures.
