On May 7, after having a full, wonderful day, I came home and had my first ever seizure. It was terrifying. I thought I was going to die during those strange three minutes. I didn't have any more after that. At least, not that night.
The next day my husband and I were out running errands when a second one hit. Again, terrifying. We immediately came back home.
An hour later, after having my third one in less than 24 hours, Chris took me to the ER. In the ER waiting room, I had another one. They immediately sent me back, where I started having seizure after seizure. They gave me strong drugs, and then, for three days, I remembered nothing.
Apparently I was air-lifted to a hospital in Lubbock. I woke up in the neuro unit, confused, and being hooked up to an EEG. I was on the EEG for 24 hours to see what type of seizures I was having.
I didn't end up having any more seizures in the hospital, so there was nothing for the EEG to see. I was told I was having "Pseudoseizures". I took that as meaning I was not having real seizures. It appeared to be because I had recently been pretty sick, possible causing the freak seizures. My meds for other health issues were bumped up because they could help keep any future seizures at bay.
So I went back to work. I worked Friday, and I worked Monday. And that Monday, I had a seizure at work. An ambulance was called, and I ended up back in the ER.
At this point I was put on epilepsy medication. And that's when life became very, very dark. The epilepsy meds messed with my moods, clouded my awareness, and left me in a state of constant confusion. And still, the seizures continued. They happened almost every day, sometimes multiple times a day. I was unable to return back to work for the remainder of the school year. I hit my head a few times. My dear, wonderful husband, would often have to carry me if I wasn't in my room, or administer Emergency Meds if the seizures didn't stop. I ended up back in the ER multiple times. Lots of IV's, lots of oxygen, lots of tests. The seizures just wouldn't stop.
After about a month, I had to go through a five day video monitored EEG. I had fourteen seizures within the first 48 hours. It was awful. Brutal. Exhausting.
By the third day, I was off all medications that could be contributing or even helping the seizures. Strangely, I was feeling better. Significantly better. I stopped having seizures. The neurologist who had been monitoring my EEG came in on the fourth day and let me know that my seizures were not epileptic in nature, but I had a disorder called PNES. I was handed a book, a lengthy, reassuring explanation, and told that the only way these would get better was through intensive trauma therapy. He asked if I'd been through anything traumatic. I laughed. There was plenty.
So my brother, who'd been with me the full five days of the EEG, took me back home, where I found my husband waiting for me in the driveway. He gave me a huge hug. Then, as I was saying hello to my kids and my dog, the doorbell rang, and my twin sister came in through the day. I hadn't see her in over a year and half because of COVID. I almost had a seizure when I saw her, but luckily it subsided and she just got a tearful, long hug. The combination of my husband, my siblings, my kids, my dog, and a lot of sunshine and exercise. The seizures started getting much better.
Finding a therapist who specialized in what I had was difficult. It took another month before I was able to find one. I was diagnosed with PTSD, and the trauma therapy began.
School started, and about once a week, I would have a seizure at work. At that point, I got approved for FMLA to have one day a week to focus on my trauma therapy. This helped significantly. For three beautiful weeks, I had no seizures.
And then I had one at work. And the next week I had another. And the next week I had another. And that week was this week, when I had a seizure in front of my students. I HATE that they had to see me like that.
I have an aura that precedes my seizures. The aura rarely leaves me. I'm almost constantly trying to divert my thoughts and body into avoiding "giving in" to the aura and having a seizure. The aura is very strong, very uncomfortable, and very unsettling. When I have a seizure, it's because the aura is so strong, and so sudden that I don't have time to try and divert it. Really, diverting it just means putting it off. The seizure will eventually happen. I just don't always know when.
I had never witnessed a seizure before having one. I've found that most people really don't know what to do for someone having a seizure. Some people, trying to be helpful, make the seizure last longer or cause me to have clusters of seizures. Here's a few quick pointers:
1) The person having the seizure is most likely very aware of what's happening around them. We can hear what you say, feel when you touch us, and can tell if you're calm or panicked. We just aren't able to respond because our body is completely under the control of the seizure.
2) It's imperative that the area around a person having a seizure is clear, and that something soft be placed under the person's head. The worst injuries I've gotten from seizures were from furniture I was hitting up against or from tile if my head was not protected.
3) Once the area is cleared, PLEASE DO NOT TOUCH US. Even trying to "calm us" can send the seizures into longer periods or clusters. PLEASE DO NOT TRY TO HOLD US DOWN. I cannot begin to explain how much worse this makes the seizure. Our bodies will just continue to move until the movements of the seizure can finish. When you hold us down, our bodies (and minds) will feel even more out of control.
4) Please do not call an ambulance unless the person doesn't have a history of seizures, if the seizure lasts longer than five minutes (each individual, not as a total) , the person seriously injures him/herself, or the seizures just won't stop. Seizures can happen in clusters (I usually have 2-4 at a time), so beyond 6 or 7. Ambulance trips and the ER typically are much more harmful (and add additional trauma) than helpful.
5) We won't be able to communicate for a bit once the seizure(s) are finished. That doesn't mean we can't understand what you're saying.
6) I didn't think I would have to say this, but please do not take advantage of a person's body who is having a seizure. I've been touched inappropriately while having a seizure (not by my husband). I cannot tell you how disturbing that is, especially when one then has to report the behavior.
People dealing with PNES feel a lot of guilt. We feel guilty for the disruption it causes in our lives (which then, of course, causes disruptions around us). We feel guilty for having them when they're non-epileptic. We feel guilty for the trauma we are causing others who are forced to witness it. We feel guilty for what this disorder is doing to our loved ones.
Grace in these situations is an absolute gift. I have rarely experienced anything but grace so far. Most of the lack of grace for myself comes directly from myself. It's hard to be such a completely unreliable person.
I'm still in trauma therapy. It's hard reliving the traumas of my life (which you inevitably must do in order to get better), but I know it's helped. PTSD is complex, multilayered, and causes a variety of symptoms, mental, emotional, and physical. The PNES is yet another symptom of the PTSD, and both require a marathon mentality to treat, not a sprint. I want it all to be over, but know that the only way for it to even get better is through the trauma therapy, the support of my family, friends, and coworkers, and by the grace of God.
