This is the most confusing aspect of epilepsy for me.
My initial 72 hour VEEG (Video EEG) in 2013 confirmed right temporal lobe epilepsy. I was given a shot of Keppra intravenously and all abnormal electrical activity immediately stopped. A short time after being discharged, I returned to my epileptologist because I was still having seizures. I explained how it would start with a twitching on the right side of my face, then my head, arms, legs, etc… I told him I was aware of what was happening and talking through them, but still jerking. These were happening multiple times a day. He suggested I be readmitted for another 72 hour VEEG. Everyone with epilepsy knows how boring these are; not to mention creepy with the video following you everywhere but the bathroom. However, I wanted to be sure the medication was working so I agreed.
I had several of these “spells” as my doctor called them, during the first 24 hours of the VEEG. He came in and told me that something was going on but it wasn’t epileptic. As he was leaving the room he said the nurse was going to insert an IV in case he missed something and they had to increase my medication. I immediately had a seizure; or so I thought. He returned a while later and we learned about PNES or psychogenic non-epileptic seizures (also called pseudo seizures). How did he know what would invoke one of these “spells?” I loathe needles. I told every person who would listen during my initial VEEG so I have sneaking suspicion it was a set up between him and my favorite nurse. It’s okay though. I needed to know they weren’t epileptic. While there was a sense of relief, I was left with more questions than answers.
I was confused as to how PNES mimicked an epileptic seizure, but wasn’t. The human brain instantly became more complicated and even fascinating to me. I questioned him and asked if they all were non-epileptic seizures. I thought maybe I didn’t have epilepsy after all. He said no, I am epileptic. There was abnormal electrical activity on the first EEG and PNES doesn’t show up at all. I did in fact have both epileptic and non-epileptic seizures. We talked about medications for it, but my epileptologist said no. He said I needed to work through the underlying issues otherwise we were just masking things. He then lifted his hands as he left the room and said, “complicated.” Since he confirmed I have both epileptic and non-epileptic seizures, I knew I had to be able to tell them apart; but how? I immediately went into analysis mode.
Non-epileptic seizures are similar to several of my epileptic seizures; mainly secondarily generalized tonic-clonic and myoclonic. All three involve involuntary muscle movements but with vast differences. When I have a myoclonic the muscle movements are short in length, quick in duration, rhythmic and affecting one muscle group or side of the body. Muscle movements during non-epileptic seizures are also short and quick; but very erratic with violent movements of the head, arms and legs. PNES starts with a twitch on the right side of my face above my lip, at random times throughout the day and lasted a few minutes. Myoclonic’s happen mostly as I am falling asleep with sudden onset, no warning and a duration of a few seconds; if that. Comparing a tonic-clonic to PNES is literally comparing apples to oranges. I don’t remember tonic-clonic’s when they happen because I lose consciousness. I am fully aware and even talking through PNES. I had figured out enough of the characteristics of each to differentiate.
It was hard, but I came to terms with having both epileptic and non-epileptic seizures. When I started to feel that familiar twitch on the right side of my face right above my lip, I decided to just relax and let it happen. I knew that while it was scary, it was also harmless. I ignored the way they made me feel and carried on with what I was doing. As the days, weeks and months went by they became shorter in duration and the gaps between them widened. When I went to my epileptologist in September I told him I had 1 non-epileptic seizure in the 6 months since my last follow up. That’s a huge accomplishment! I went from too many to count in a day to 1 in 6 months.
If you have both epileptic and non-epileptic seizures like me or just non-epileptic seizures, hang in there! I know it’s scary and frustrating but try to look around and see if there is a trigger somewhere. Yes, non-epileptic and epileptic seizures both have triggers. And, some of them are even the same including; stress, sleep deprivation and stimulants (such as caffeine and sugar). I use nutrition, exercise, getting enough sleep, meditation and weekly massages as aides to help combat both types. While both are still unpredictable these practices can help me stay completely seizure free from both for a long time to come!
And, if either seizure type decides to rear their ugly head again. I will keep doing what I am doing. Neither one of them can stop me. I’m in charge of me – Not them.