When you spend a day in the life of someone with PNES (Psychogenic Non-Epileptic Seizures) or newly called “Dissociative Seizures” (formerly called “Pseudoseizures”), it can vary greatly, so, when I say “A Day in the Life of PNES”, I mean, myself, specifically. So, I personally, have anywhere from 2-8 seizures per day lasting from 15-45 minutes, all unpredictable. The only trigger we’ve figured out has been when I get tired. Some people know more about theirs, some know less. I have PTSD, which is common in people with PNES. The title pic is a two-toned ribbon for a reason. Teal is for PTSD and purple for epilepsy (I like to triple the purple for to include Fibromyalgia and Domestic Violence as well). My life had been ravaged by an abusive marriage, but I had, as I generally did, suffered in silence, repressed it, moved on, fallen in love with a great job…and then… they just came out of nowhere. So, I’m giving you my daily schedule, as it stands now. It changes quite frequently.
“Wake-up” is a loosely based concept. Because of the PNES, I’m not currently working and I’ve always had insomnia so, it doesn’t really matter. I wake-up at 10:30p or 2:30a or anywhere in between. I’ve become a night-owl and a day-owl who’s completely overtired and an insomniac. So, I wake-up and work on the blog or sometimes, I have a Dr’s appointment (I also have some serious physical health issues to juggle) or paying bills or faux shopping on Amazon or playing on Pinterest, but definitely not answering calls from bill collectors. I don’t read because PNES effects the language part of the brain, but I can write, for some reason (Although, it takes me awhile to write and I have to have my fiance read my blogs over to make sure that they make sense.) Keeping track of time is difficult for me as well, so I need reminders. I become anxious when leaving the house, namely because I’m afraid of having a seizure, but also because I’ve developed Agoraphobia since I’ve begun this battle. It’s been a slow slope down.
The reason that I listed seizures 1-8 is due to the fact that the amount of seizures per day varies. At one point, I was having up to 10 seizures per day, but the number has come down. My seizures currently last anywhere from 15-45 minutes. The longest I’ve ever had is 90 minutes. That was hell on my body. Sometimes, the seizure itself is so exhausting that I immediately go into REM (Rapid Eye Movement) sleep and no one can wake me.
The first seizure of the day can vary on what I’ve already done. If I’m tired, it’s most often an absence seizure. An absence seizure looks mostly like a robot suddenly being switched off and turning into a little puddle. The second most common type is what I call the “roly-poly” (I basically roll back and forth) seizure that’s mostly self-soothing, like rocking your entire body to sleep. The last, and least common (lately), are the “planking” seizures that appear to be Gran Mal seizures, but are simply my entire body stiffening, like a plank, and my fists clenching and unclenching. During these seizures, I can hear what is going on around me and sometimes open my eyes (even cry at times).
I hope that these posts will educate at least one person who will pass it along. Since this is as common as MS, I want people to know that this is a real diagnosis, not something that people are faking to get attention. If you are a professional who assigns diagnoses on a regular basis, this would fall under the “Conversion Disorder”, but I hope that you understand that THIS is truly a category all it’s own.
All Pics have come from Google and Title Pic was designed using Canva.
Please feel free to leave comments, ask questions, or share a piece of your story! Thanks for the read!