Why Did My Sleep-Seizures Go Crazy?
Sleep deprivation, tongue-biting, and TMJ
CURIOUSER & CURIOUSER: The Jaw-Slamming Jolts
In 2023, we finally figured out why my tooth implant refused to heal. This site had been infected since 2019, and kept plaguing me with a host of full-body infectious symptoms every time it acted up. Curiously…nay, suspiciously…it acted up every time my brain went in the dumper. Go figure my body suddenly had trouble keeping infection at bay when its neurological system was crashing.
For four years, my medical, dental and surgical teams played a game of “Not It!” with me, insisting that this problem was not in their jurisdiction. They tried to convince me it was all in my head—that there was no infection.
Until it got so bad they had to say, “Oh. Yeah, I guess it is infected. Huh.”
The only remedy anybody could think of was to take the implant out, yet my surgeon kept insisting that nothing was wrong with it. He eventually stopped taking my phone calls.
So what was actually wrong with it?
Nothing.
When my parents got so pissed off that they took me to their very expensive, very thorough oral surgeon/orthodontist, he took imaging of my skull and neck on par with an MRI. There we discovered that my stupid crown had been over-sized and mis-seated, and was pinching the gum tissue every time I chewed.
But the bigger problem was my jaw.
I have an overgrowth of bone, and my teeth have been getting worn down over the past two decades because they keep gradually getting forced out of position by my chronic stress-grinding on a misaligned mandible.
Well…haven’t I always been called “unhinged?"
Gwa-har-har…
This came as no surprise to me. I’ve been diagnosed with TMJ since shortly after my big car wreck in 2000.1 Dentists to chiropractors have mentioned it. I mentioned it, but just like my seizures, nobody ever did anything to fix it except a little work on my jaw muscles by my first chiropractor and massage therapists right after the wreck. Since I’ve always had (seemingly) bigger fish to fry in my slew of bodily maladies, I forgot about it.
My body didn’t.
So my new dentist reshaped and reinstalled my crown—voila! Infection: gone, and it hasn’t come back. Then he fitted me with a TMJ splint (picture a mouth guard but it’s super hard and unyielding) to correct how my jaw had been knocked askew while being shaken and stirred by a drunk driver. Another rear-ending, two assaults by hacked off, testosteroney dudes who don’t like the word “NO,” and a fall down my stairs hasn’t helped this issue.
But the splint has.
Alas. Curiously…suspiciously…within those first days of wearing it, I started having violent jaw-slams, neck-tremors, and head-jerks as I tried to fall asleep.
These are different from that body twitch thing that happens commonly. You know the ones. Most people have them. That sensation like you’re falling, and you jolt awake with a gasp. Or just a twitching limb or shoulder. Which I totally have.
This is something else.
Not Your Normal Night Twitches
These episodes come with a big head rush and blinding flash of light as my jaw slams together—sometimes so hard that I puncture my tongue with my teeth. If my head is turned a little sideways and the side of my mouth has drooped in between the teeth through the phenomenons of relaxation and gravity, I’ll bite the inside of my cheek instead. The sores often last for about two weeks. If I’m stressed or run down, these things can swell up to the size of a dime.
Back in 2001, when I first started describing this malady to the girls at MADD and to other NeuroLand people, they warned me that these could be micro-seizures—or myoclonic seizures.2
They said this is very common while falling asleep or waking. Can confirm. As such, they’re also called nocturnal seizures. Whenever I’ve researched the broad variety of seizure types, I have always found descriptions of exactly what happens to me, yet nobody ever referred me for a sleep study or continuous brain scan until 2024. 3
Apparently being sent to the emergency room for a CT scan when one’s pupil becomes fixed in a state of dilation legitimizes one’s descriptions of being plagued by these “sleep seizures,” sometimes daily, for months.
Although I do occasionally get them as I’m starting to wake up or in the middle of the night, they most often occur while I’m drifting off to sleep. Once I started wearing the TMJ splint, they almost exclusively happened—not when I’d gone to bed for the night, but when I laid down in the afternoon for my brain-rebooting nap that I’ve had to take at least once a day since my first TBI in 2000.
That’s also the year my various types of seizures started.
Eventually, as my brain and spine healed, and as the ridiculada of constant overload from that whole car wreck ordeal began to recede, I stopped having absence seizures, and all the myoclonic type became manageable.
Mostly.
But they returned with a vengeance after both assaults, and after being rear-ended a second time. They also came back after falling down my stairs at the end of 2022, and worsened through the next months of brain-bombardment during the G-Men Incident.4
They went absolutely crazy after I was fitted with the TMJ splint that summer.
By the end of 2023, I was having as many as 7-12 of these jaw-slamming jolts in a half-hour, and often had to give up on trying to nap. Sleep deprivation is one of the most common triggers for the worst of my neurological symptoms: seizures, migraines, meltdowns, shutdowns, dizzy spells, blackouts. So we try to prevent sleep deprivation at all costs.
It eventually got so bad—yet I was still being looked at like I was crazy—that I pulled out my video camera just to prove to myself that it was actually happening.
It is.
Let’s look at the small-to-medium sized episodes. The day I recorded, I didn’t have any of the big ones where it looks like somebody just cold-cocked me. (Thankfully. But alas, for science-geekery.)
At least my body started figuring out how to hide my tongue down inside the well behind my lower teeth so I stopped biting it over and over. I also started shoving a pillow under my chin so my jaws didn’t have any distance to slam, and so my head wouldn’t fall sideways, making me bite the inside of my cheek.
When I asked my dentist if tongue-piercing jaw spasms were a common phenomenon with TMJ splints, he said he had never heard of such a thing. He asked around. Neither had any of his colleagues. I couldn’t find a single reference to it online either.
But something was definitely happening beyond the bounds of my tooth and jaw issues, because at the same time…
MY NECK HEALING WENT INTO OVERDRIVE.
Particularly in the uppermost regions just behind the hinge of my jaw, underneath my chin in my deepest throat muscles, and at the base of my skull where it joins my neck. You know…the place where my head hasn’t been screwed on straight since it got whipped around and bashed by a drunk driver?
Curiouser and curiouser…
Because my seizures have always been connected to what’s going on with my upper cervical vertebrae.5
Makes sense to me. When my neck is misaligned in certain ways, apparently this slows my cerebrospinal fluid down to a drip and makes it back up inside my skull. On the days when I actually do get warning signs that a seizure is coming, this is precisely where I feel it start. It’s a distinctive kind of itching in my occipital region. Especially on the right side.
You remember the golfball-sized lump I had on the right side of my neck the morning after I was hit by a drunk driver, right? Well, it’s never really gone away. In the past years after I switched from rack-n-crack to upper cervical and neuro-chiropractic, I go through phases where it almost disappears for awhile. During those times, instead of having a reverse-curve, I start working through straight-neck toward restoring my natural curve.
It’s eternally up-and-down. Eh. It’s a process.
After we started realigning my jaw, I suddenly gained more space and mobility in my neck, and that lump almost disappeared. I even had a couple chiropractic adjustments where the cervical vertebrae in the center needed to be pushed straight forward.
As in—the direction of moving past a straight neck and into a natural curve again! Woot!
It was the first time I’d ever needed that adjustment.
EVER.
They say that, when the body goes through healing of a longterm condition—like realigning a spine and jaw after 24 years of compensation and degeneration—often you have to go back through symptoms that haven’t plagued you in ages. So I started to wonder…
Was I experiencing this resurgence of seizures because my jaw and vertebrae were being pulled out of the compensatory degenerative positions they’ve devolved into over decades, and back toward the initial places of injury that started all this after my big car wreck?
Or was my brain simply overloaded by all the stuff it deals with all the time? Did having to relearn how to tense/relax my jaw muscles in a new-old way push it over the edge?
Both?
Or were these things completely unrelated and coincidental, like more than half of my medical team wanted me to believe?
It is all in my head, after all…
Was I just being paranoid? Psycho? Cray-cray? Seeing patterns that weren’t there?
Further research was required.
UP NEXT: MY JAW-SLAMMING SLEEP-SEIZURES EVOLVE. AND MULTIPLY. Good thing I was finally scheduled for a 5-day in-hospital continuous EEG to discover What The Bleep.
© 2025 Hartebeast
If you missed the initial adventures of that EEG, or the neurological maladies that brought me there, you can find them all in this handy-dandy Table of Contents:
TMJ - tempomandibular joint disorder after a car wreck
The TMJ splint therapy we’ve done to realign my jaw
The car wreck that caused it in 2000:
BLAM.
Zero Regrets. If only I wasn’t such a chatty-cathy social butterfly, a hostess-with-the-mostess, a proud, doting teacher—I would have made it to the back room and had my costumes packed before ten o’clock after our holiday dance recital...
“If you’ve never been sent to a neurologist…I guess you don’t need one.” - The 23 years it took to finally be tested by a neurologist.
My first experience with an EEG and neurologist in 2013. Much good did it do me.
The G-Men Incident: The dumbest, super-smart, prudent, responsible thing I’ve ever done, and how it got me booted off SSI.
Neurocatastrophic consequences of upper cervical spine instability. “Neurocatastrophic.” Sounds scary…ooooh… Yes. It is. It also sucks to live with.
What happens when one’s head is not screwed on straight. Literally. - seizures, epilepsy and the upper cervical spine.
**In case it’s not obvious, please always remember that I’m not a neurologist, chiropractor, oral surgeon or any other official type practitioner. I’ve just lived with the stuff with decades, and I try to be proactive about my medical care. Why do you think I take such meticulous, anal-retentive notes about these things?
One day there has to be a book or a movie or a tv series or something that chronicles your entire ordeal — because, it’s freaking incredible.
I feel for you so much Alexx! I can’t even imagine how hard all of this madness must be.
I also find it fascinating how sometimes there is literally no one who has any idea what’s going on with us and it falls back on us to figure it out for ourselves.
Wishing you health! :)