I slept in my neck brace for the first time last night. I overdid it yesterday not just to the point of absolute exhaustion, but I brought on another spell of seizure activity. What kind of seizure it actually is, I don’t know. I do know that “epileptiform seizure activity” showed up on one of my EEGs, but that doctor got fired shortly after testing, so I’ve yet to get an official seizure workup and diagnosis.
Now, if you’re not familiar with seizures, you probably only know of Grand Mal (tonic-clonic) seizures where a person’s entire body spasms violently. That’s not what happens to me. I get these sort of ‘jolts’ and ‘twitches’. Mostly, it’s not painful in itself, but if it moves a joint or uses a muscle that’s already hurting, it definitely pushes up my pain score. Here’s a YouTube video showing four different kinds of seizures in people (it’s short – about five minutes) to give you some examples. What happens to me looks a bit like Simple Partial seizures, and they can be limited to just one small area of my body or run through the entire thing. Last night, it was a whole body episode. (I don’t lose consciousness and am aware of everything the whole time.)
It’s not all that uncommon for me to have some minor twitching on any given day, especially downstream from an aggravated joint that’s irritating the nerves within. So, it’s not very alarming. It’s just something my body does, like farting a lot or popping whenever I move. Usually, I can change position or work the joint/muscles enough to calm it down to where it’s not interfering with my desired activity. Well, last night the little spurts of twitches were jumping all around my entire body – toes, ankles, knees, fingers, shoulders, … even my jaw and abs were participating.
At first it was a little funny – I was all snuggled up to Hubby, and our hands were together on his belly. The tip of my thumb starting wiggling like crazy, intensifying more and more, so Hubby grabbed on and tried holding it down. He failed. We lol’d. I took my hand back and tried popping the joint. It helped it little, but it didn’t stop the wiggle. In fact, all the wiggles and twitches and spasms just kept getting more and more intense. Soon enough, my legs were kicking against my will, my back was trying to flip me over off of my side, my shoulders were trying to punch me in the face, and all my fingers and toes were playing some invisible piano.
I know the problem is spinal laxity – both the joints, cartilage, etc. within the spinal column, and the tissues within my brain and spinal cord. My vertebrae had slipped enough to be putting pressure on my spinal cord and brainstem, disrupting the flow of cerebrospinal fluid through my central nervous system. I have known Absence seizures, which is where I believe the epileptiform activity comes in, but these spasms, I’m convinced, are purely a spinal displacement issue. Last night supported this theory quite clearly. I might be wrong. Obviously, I’m not a medical professional, and something like seizures or nervous system dysfunction is incredibly complicated. So far, though, this theory is the best fit based on my research.
Here’s a handy little diagram of the craniocervical junction (from MusculoskeletalKey.com) to help demonstrate what’s happening:
Right here on the bottom left – the Atlanto-occipital joint – was the culprit last night. I knew it was a cervical displacement, and I can usually massage knotted muscles in my neck and head to relax them so they allow things to slip back into better position. Typically, it’s C2 (the Axis, which slips right or left of center all the time), C5 (which is perpetually slipped up and forward, called ‘anterolisthesis’), and then C7 through my thoracic causing all the trouble.
Last night, I literally pushed my Atlas (C1 – the very top vertebrae that connects your skull to your spine) back IN. It had jutted straight back and out of alignment, pulling on my brainstem from right where it exits the skull. Imagine eating an overstuffed sandwich and the filling squeezes out the other side and onto your plate. It’s sort of like that – my skull and C2 just sort of squished C1/Atlas right out the back. Then, like sliding a CD into a slot-loading stereo, once I got it *very delicately* into the right spot, it just slipped itself back in where it belonged.
I held my hand there for a minute to keep it from popping right back out, and I could feel the shift radiating throughout my head, eyes, ears, and sinuses. All the pressure in my head shifted, and I had that feeling I often get where it’s like I’ve been hit in the back of the head or across the bridge of my nose. It’s like a tingly, bleedy, hot, wet sort of sensation – somewhat akin to running frozen fingers under lukewarm water to return blood flow, only it doesn’t really burn so much as it feels like raw flesh being exposed.
Anyway, the twitches and wiggles immediately started dissipating. I’d already been crying a bit by this point, and I cried a little harder for a second, laying in bed with my hand cradling my skull. This was a full hour after going to bed. Once I felt like things were stable enough, I got up to separate the cervical part of my brace apart from the thoracic part, put it on, and went back to bed. Of course, that wasn’t the end of the seizuring, but the worst had subsided, and I was finally able to get some sleep.
Hubby was so sweet through it, too, holding me, reassuring me “I got you.”
I’ll be keeping my neck brace on all day today. Well, for as long as I can stand it, anyway. I’ll take it off for eating and to take brakes here and there, but I know the smarter thing to do is keep it on. Thankfully, although I can feel some places further down my spine are still displaced today (really, it’s the norm for those spots), I’m still feeling better than I did at bedtime last night. My heart rate is back to normal range (no longer arrythmic or tachycardic), and I have more control over my breathing. I can think clearly enough to write this and carry on normal conversations. I’m not stuck in fight-or-flight mode by my body using adrenaline to treat pain, which renders me hypervigilant (sometimes to the point of paranoia), hypersensitive both physically and emotionally, and buried in sensory processing dysfunction. (This leads into my theory that I might have a touch of Cerebellar Cognitive Affective Syndrome as a result of this structural lack of integrity, but that’s another post. There is a pretty informative video from the Chiari and Syringomyelia Foundation‘s conferences on YouTube about it that I shared a while back if you don’t want to wait for the blog I’ll be doing later.)
You can read my previous post about vertebral slippage episodes here. I also go into a bit more detail about my spine with MRI images here.