What is PNES?
PNES (Psychogenic Non-Epileptic Seizures). Psycho is what most people hear first. They’re often tied to PTSD and diagnosed, technically, as “conversion disorders” by practitioners and psychiatrists. In the past, they’ve been referred to as “Psuedoseizures”, which is a bit insulting. Now, they are often referred to as “Dissociative Seizures”, which makes more sense, as they’re a way for your brain to dissociate from stressful events (or even non-stressful events like flashbacks). I started having them, out of the blue, more than 3 years ago. Since I’ve been a therapist and a client, I’ve got a strange perspective from both sides of the glass. I’ve both had, and lost, the coveted keys.
PNES is diagnosed technically by doing a video EEG, where they put you through a series of tests, all recorded, with electrodes on your head while they try to see if you seize while being stimulated with different things like strobe lights. (Those made me seize, btw. I now have to where hats to concerts if I could get up the nerve to go to such a crowded place). While all “dissociate seizures” look different, I can describe my 3 different personal types. First, the roly-poly seizure, it’s on my side rocking back and forth. Second, the absence seizure, my most popular, and most frustrating as it is so unexpected. With an absence seizure, I just go limp, like a robot turning off. Third, what looks like a typical gran mal seizure. Total stiffening of the body, which leaves you exhausted and in great pain. I can have all 3 at once. I fall. I hit my head. I hurt. I’ve broken my wrist. It sucks.
You might not care because it doesn’t directly effect you, but it effects about the same number of people in the world as Multiple Sclerosis. With a rise in those with PTSD, there could be a rise in those with this particular disorder. It’s hard to differentiate from the naked eye at times, but once you know about it, you might be able to help someone you know. If you’re a practitioner, you should care very much about this because I can tell you just one of my horror stories. I had an absence seizure in my therapist’s office at one point, so she decided it best to call an ambulance (I get the full bill, btw for this every time because it no longer counts as an emergency under the non coverage for pre-existing conditions anymore). The paramedics decided to do chest compressions all the way to the hospital, despite my regular heart rate and blood pressure. You see, during these seizures, I can still hear and feel everything around me. They even discussed giving me Narcan. Inform yourself and everyone you know.
First, get a video EEG done by a neurologist. Second, make sure that you truly have PNES rather than epileptic seizures OR are experiencing both. Sometimes people need an MRI of the brain to make sure there’s no damage. (I had to have one because my ex-husband liked to bang my head into things, that’s for another blog post.) Third, inform the people close to you what to do if you have a seizure in their presence. If you have a “caregiver”, make sure they know how to handle your seizures and what your specific needs are during a seizure (especially for your own safety). Fourth, find a therapist connected with a psychiatrist because, some people, have found medications that help them. At some point, join a support group. Facebook has many different groups to join that are very helpful about resources and how to manage your seizures. Find more resources and a case study at the Psychiatric Times https://www.psychiatrictimes.com/view/addressing-psychogenic-nonepileptic-seizures-clinical-challenges
First, talk with the diagnostic staff about what to anticipate. Second, learn how to keep your person safe during a seizure. These falls can be quite traumatic sometimes, as I said, I’ve broken my wrist before. Third, join a support group. Facebook has many caregiver groups to join as well. If you want to learn more about what people are specifically going through and better coping skills, and management tools with therapists, you can sometimes join a support group meant for members who specifically have PNES. Lastly, and most importantly, make sure you have a plan of self-care so that you can avoid care-giver burn-out (look for this in another blog altogether).