10. Dobby is FREEEE! From the EEG
They got all the information they needed. Then so do I.
This series about my 5-Day In-Hospital Continuous EEG with Video Monitoring starts HERE.
May 7, 2024
Night 2
Trying to sleep. Ugh. Seizures are going gangbusters.
10:50 pm - jaw slam
11:10 - bright flash and head rush, can’t type, klutz-dropped the phone, almost had another meltdown.
11:22 - jaw slam
11:39 - L hand thrash
11:42 - bright flash and head rush
11:44 - R hand
11:47 - jaw slam
11:56 - bolted upright because my bed just yelled at me like a siren with yellow flashing lights. Power-blip and reboot. The EEG screen is out. The other screen is still on but the bed is still flashing yellow. Are we back to tornado warning? Ah-hah. Nope. They’re testing generators tonight. Joy-joy. So they’ll need to get EEG people back in.
May 8, 2024
Day 3
12:07 am - Okay, so on startup, the EEG video camera does move and align itself. BUT NO. It does NOT have a sensor that tracks me around the room as I move, yo! So Nighty Gaslighty Nurse can bite me.
So many things so many people don’t understand about all of this—this machine, this procedure, brain issues on non-elderly people who don’t have half their faces sliding down their skulls or other super-overt symptoms you can see a mile away. They’re the professionals in this, yet there are ways in which I understand it far better than they do. Of course, I’m “only” the patient. *eyebrow* You know, I’ve only been living with this crap since 2000 in a body I’ve driven for more than half a century…
Blahhh. And now, back to our regularly schedule sleep attempts.
12:27 - L hand
12:31 - big jaw slam
12:36 - L arm
12:39 - R hand
12:46 - R hand
12:50 - big R arm thrash
1:02 - R arm
1:08 - low back
1:12 - bright flash & head rush
1:55 - shoulders/spine jerk
2:11 - spine jerk
2:28 - R arm
…
…
5:16 - Woooot! I slept!!!! Until trash n vitals hour. Dang it. Then my bed yelled at me again and red lighted me for trying to pee. After the generators they forgot to reset it. 🤪 So…try-try-try again…
5:50 - low back jerk
5:53 - upper L lip keeps twitching
6:14 - jaw slam
6:16 - jaw slam
6:32 - a bunch of tiny ticks—R upper lip, brows, neck, and then a big side to side head-thrash before super big flash. Screw it. Getting up.
8:00 - Back to bed. I’m not gonna keep track of symptoms anymore to see if that will help reduce them.
8:34 - Narp. It didn’t. And dang it, I was just starting to snooze—in they came for the morning interrogation—eye shine, name, DOB, where are you? Do you know why you’re here? Do you know the month & year? I could make a snarky poem from that, don’t tempt me, dear…
9:01 am
In comes The MANN to tell me what’s up. (That’s short for The Most Awesome Neuro-Nurse, if you don’t remember. In other words, the head nurse in charge of my hospital stay who has been communicating between me, my neurologist, EEG Unit, and the rest of NeuroFloor.) To my relief and delight:
DOBBY IS FREEEEEEE!
They’re releasing me early because they got all the information they needed.
It is official: I do not have epilepsy!
Whew and woowoo!!!!!
Of course, we also know what that means as far as treating my issues…but hey! I’ll take this win.
The Most Awesome Neuro Conversation with The Most Awesome Neuro Nerd—I mean, Nurse
Once The MANN reiterates my diagnosis of non-epileptic seizures1 and talks me through the checkout and followup procedures, he asks if I have any questions for him.
Do I?
Ohhhhh, do I!
And for once, I get some friggin’ answers.
Okay, I get as many answers as anybody can give me about this situation, which is completely fine with me. I much prefer, “Honestly? We don’t know,” or “We don’t have the technology to test that yet,” to somebody looking down their nose at me like I’m a pain in their butt as they try to maintain The Position of Authority and Know-It-Allness.
This is tricky stuff. That’s one of the many reasons why I have spent so many friggin’ posts and page after page of detailed journal notes about every flippin’ blip of my body—to provide a blow-by-blow of what it’s like inside a meatsuit that’s malfunctioning in this way, so that when they finally cut up my corpse, poke-n-prod it, and subject it to experiments, they’ll have the living map of how it got to that state.
So I ask my questions.
I also toss out my theories.
The MANN really is The Man. He is so easy to talk to. Personable and thorough, patient and inquisitive, deeply engaged with our entire conversation—which is a breath of miraculous air in my experience with NeuroLand. His thoughtful responses and the follow-up questions he asks me show just how much of a neuro-nerd he is.
This is his passion and it shows.
For the first time in this entire 24-year adventure, a medical professional leans in toward my theories, not away. His eyes light up in intrigue, shining with curious consideration of what I’ve said, as well as the swirling and whirling of the things that he’s been wondering about and thought about and considered and theorized.
It’s a genuine conversation between equals who have completely different areas of expertise: him as the educated, trained neurology professional with decades of experience, and me as the obsessively inquisitive, highly researched owner of the malfunctioning meatsuit for over 50 years.
“Can you have absence seizures that are non-epileptic?”2 I ask. (Even though I know the answer. I just really want to hear what he has to say about it, to see where he stands, and which phrasing he’ll use or shut down.)
“Oh, absolutely,” he says. “Any kind of seizures caused by epilepsy can also be non-epileptic.”
“So…” My fangs drip a little anticipatory drool. “That also goes for myoclonus?”
“Of course. Myoclonus simply describes the short, fast jerking motion.”3
Hah! Take that, assholes! I friggin’ knew it!
“So this…thing my head and spine have done since 2001…this thing I’ve described over and over, and that neurologists and doctors and nurses and residents charged with treating me when I was on Indigent Care… Medical professional after professional has looked at me like I’m nuts when I tell them that it feels like an itching at the back of my skull in the occipital bones. Then it’s like a blinding flash of light with a loud rushing noise. It feels like a wave of lightning shoots up the back of my head and snaps my neck sideways like somebody just cold-cocked me. It’s almost always to the left. I’ve done this over and over and over since I got hit by a drunk driver and acquired my first TBI. It only takes a second, and it’s a very fast jerk. Does that sound like myoclonus?”
He assures me that it could be. Not that it definitely is, because he’s never seen it and he is not The Neurologist, therefore he doesn’t possess the Almighty Diagnosing Powaaaah.
But for once, I don’t get looked at like this is not how “reeeeeeal” seizures present. You know, falling down and flopping on the floor in a sizzling bacon impression.
We naturally have the standard conversation about that super common floor-dropping-out-from-under-you sensation, as well as varied limb-twitches as you start to fall asleep. I assure him that I do have those. But not so often that they disrupt my ability to sleep on a daily basis. They also feel vastly different, particularly with the sensation and sound that happens inside my skull, accompanied by the bright flash against the backs of my eyes as this other type of jerking or twitching occurs.
“There are all sorts of things that can cause myoclonus,” he says. “Sometimes it’s something as simple as a calcium deficiency.”4
I hit him with my Spock-eyebrow and make a mental note to put that on the list of things to check with my primary doctor. “I’ll tell you what the two most common factors are when I have these things,” I say. “First, my brain is overloaded somehow. Either too much sensory stimulation—bright lights, too much overlapping noise to process, having to do too many tasks that I’ve been medically removed from for too long—or sleep deprivation. It’s way worse if I’m dealing with both.
“The second factor that always sees an uptick in these symptoms is when I’ve acquired a new neck injury. Once we start getting my neck back in alignment, these episodes are always greatly reduced. Sometimes I don’t have a single episode for many months. Maybe one a year, for years. Then my neck gets injured again? Boom. Seizures.” 5
This is when he leans toward me in intrigue, and starts nerding out about the various theories they’ve got about the connection between neck issues and these types of seizures that they can’t capture on an EEG, as well as the epileptic ones. (Can’t always capture those on EEG either but hey, it’s easier to test for than un-EEG-able PNES.) 6
“One of my chiropractors basically said that, with the particular subluxation that I have, nerves could be getting impinged. Or my cerebrospinal fluid might also be impinged and slowing down to a drip. When I pictured that, I asked him, ‘Then what the heck happens to all the rest of it? I mean, does it get all backed up inside the skull?’ He told me that’s exactly what happens to it. So I asked him, ‘Like…right here?’” I cup my fingers, claw-like, around my right occipital bone. “He told me, ‘That’s exactly where it would back up with the way your upper cervical vertebrae are most commonly misaligned.’”
Now The MANN and I are really geeking out together. First he warns me against doing any kind of “high-impact chiropractic.”
“Oh, hells no!” I say, and he doesn’t bat an eye at my delivery. I go on to tell him the amazing results I had once I switched out from traditional rack-n-crack to Upper Cervical and then to Neuro-Chiropractic. “All that head-twisting and hip-slamming has actually caused more damage instead of helping me, whenever I was subjected to anybody with an ego about getting my neck to crack.”
He growls about that, and we talk a little more shop.
I tell him about the intriguing (and debilitating) experience of having my sleep-seizures go gangbusters through the entirety of my time with the TMJ splint, how they tapered off the closer we got to finishing that treatment, and how they’ve kicked back up now that we’re doing the Invisalign.
“Tell ya what though,” I say, “all that work my chiropractors and I have been doing to restore the natural curve of my neck and get it back in alignment—it had both a curve that swung almost out to my cheekbone when we started, as well as a reversed front-to-back curve, and the vertebrae also were twisted at wonky angles. Well, since starting TMJ treatments, the neck healing has also gone gangbusters. They actually just had to push my C4 straight forward for the first time ever! As in…I have a straight neck right now—which is better than the reverse-curve. But they finally had to start pushing that center vertebra in the direction of its natural curve!”
This was extremely exciting to me, given how many years I’ve been battling to keep my neck from degenerating further. Progress in the healing direction has been an astronomical improvement, and it’s really nice to see somebody outside the chiropractic field also get excited about that.
He also seems intrigued about the connection between my TMJ treatments, my accelerated neck healing, and my seizures.
“I keep wondering if we’re actually going backwards through a place in my misalignment that, when the injuries first happened, were in that awful place that backed up my cerebrospinal fluid and impinged the nerves. As we restore it, of course we have to pass through that awful place again, which is maybe why my seizures have kicked back up…?”
I mean…the jaw bone’s connected to the…skull bone. The skull bone’s connected to the…atlas. The atlas is connected to the…C2…C3…C4…
BOOM.
The body is a fully integrated and interdependent system, not a compartmentalized office building, divvied up according to the curriculum on a university department list or the specialized units and wings of a hospital. Why is this theory—excuse me, reality—so baffling—and even insulting—to so much of the medical world?
WHYYYYYYYYY.
FFS.
But not to The MANN. He also doesn’t roll his eyes or shut me down when I muse, “Is it just a particularly crappy position that my vertebrae are moving through? Is my brain simply too overloaded right now with having to regrow new bone every two weeks, realign my jaw, realign my neck and the resulting realignment of my whole friggin’ spine, plus all these brain scans and everything else I do all the time? Was adding the TMJ treatments just one spinning plate too many for my already damaged brain’s juggling capacity? All of the above? I dunno.”
He doesn’t either. Obviously. But that’s not what’s important here. The fact that this is a nerd-out conversation, rather than a session of popping me on the nose because I dare to think for myself and voice my contributions without Yes-Girling or fawning all over The Almighty White Coat?
I don’t have the words to describe my relief, my respect, my gratitude, and my deep admiration.
ALL THOSE HITS TO THE HEAD
This conversation segues into another theory some of my fellow NeuroLand residents and I have been rolling around in our heads about what’s going on inside mine: if I have what they call “punch-drunk syndrome” or Chronic Traumatic Encephalopathy (CTE).
I mean, I’ve only had six brain traumas, four of them concussive, one of them chemically toxic.
The MANN tells me that, alas, because they don’t have the technology to test for these kinds of things the way they can test for epilepsy on an EEG, so much of NeuroLand focuses on the things they can test for.
But he also says that everything I’m describing, everything I’m suspicious about, everything I’ve theorized are the very questions that are being asked and researched in the hopes of ever figuring out how to test, diagnose, and treat these more elusive conditions like PNES and CTE.
I raise one eyebrow. “Sure they have a test for CTE,” I snark. At his questioning brow-twitch, I say, “It’s called an autopsy.”
He lets out a dark chuckle of “touche.”
I appreciate his appreciation of my Underworld humor.
In all, this conversation is the most satisfactory and educational one I’ve had with any of my medical professionals since my first neuropsychologist helped me understand the basics of TBI in 2001.
Which is really saying something, considering the severe lack of authenticated, concrete information he can give me. He’s always very careful to pause (while he burns up gears inside his head, trying to come up with the most professional and legally safe way to phrase something) before he speaks what’s on his mind (and omits all the things he has to).
He’s very clear though: I am NOT off my rocker with the gazillion odd-shaped pieces of variegated hue that I’ve started suspecting are actually part of the same convoluted puzzle.
My relief and vindication at the end of this conversation could fuel a launch to Pluto.
GETTING READY TO GO
An hour later, a soft-spoken, white-haired gentleman from Pastoral Services shows up. He, like so many others who encounter me on this floor, is stunned by how bright, shiny and young-looking I appear with non-crinkly face and my long hair.7 People up here comment a lot on my hair, and about the Hoodie of Many Hues. Everybody loves that hoodie, but I think it’s really the fact that I am over forty and haven’t chopped all my hair off “because I should.”
And on NeuroFloor, of course they’re stunned by the color in my face. (Which I find laughable, because after only three days, I am washed out and tinging into that weird grayish-yellowish-green I always get amidst the worst of my neurological distress. But I know, I know. Compared to who they’re used to seeing on this floor…)
After his stunned greeting, he offers me Communion, a prayer, or just well-wishes. After everything I’ve been through, I am totally in the mood for a prayer. I mean, I might not adhere to any specific religious anything, but I’ve always been a deeply spiritual, soulful person and I have immense capacity to translate.
He wishes me healing and that the problems on the inside will soon reflect the vibrancy outside. His words and the kind way he holds my hand, giving me a grandfatherly pat, totally choke me up. After I thank him and he leaves, I have a good, cleansing cry.
Okay, fine. I have a good heave-sob all over my bed.
No snot on the ‘trodes, yo!
What can I say? These three days in my secluded torture chamber and this past half-year of brain testing and the nine months of Hell before that and the year of government agency crap on new TBI steroids before that, combined with the marrow-deep relief of my early release and now The MANN’s news…
Yeah, all that may have something to do with my emotional dam crumbling into deluge.
After the pressure-release valve has been pushed, I dork around, waiting to be unleashed. Finally, EEG Crew comes in to remove the ‘trodes. Although I’ve got some pretty good red marks, I didn’t have them on long enough to develop open sores—woot! The glue is everywhere in my hair, so they send me home with some special shampoo and tell me to expect peeling it off for several more days.
Alas, it’s only Dad who comes to pick me up. I know Mom wanted to be here, but after her second, bigger stroke, any kind of significant road trips are really hard on her, so she stays home. Even so, she sends me all her love.
Purrrrr…
HOME AGAIN, HOME AGAIN, JIGGIDY-JIG
5:29 pm
And now, ladies, gentlemen, and peeps…for my next great feat, I shall attempt, for the five-gazillionth time, to fall asleep without having a micro-seizure every 10 minutes. (Or less.)
Drumroll…
5:32 pm - BZZZT! Thank you for playing. Jaw slam. And now the pinky side of my L hand is totally numb. Huh. That’s not my usual rodeo. Usually it’s the thumb-and-first-fingers of the right hand.
6:06 - spine - jolted awake. Try again. Hand still numb.
…
…
7:49 - Ahhhhhhh…at last an uninterrupted snoozer!
11:39 - Okay, fuck this. Trying over and over to sleep. Seize, seize, seize. A dose of NyQuil and I’m leaving my Invisalign trays out for the night so maybe I can finally—
Zzzzzzzzzz…
UP NEXT: I go in to discuss these six months of brain scans with my Neurologist. Drumrolllllll… THE RESULTS
© 2025 Hartebeast
You can find the Table of Contents to this whole adventure here:
What causes non-epileptic seizures
The Truth About Non-Epileptic Seizures
Unraveling the Mystery - many are accused of faking seizures but PNES are just as disabling as epilepsy.
Can a pinched nerve in the neck cause seizures?
Seizures and neck pain - could Upper Cervical care be the missing link? (It’s sure had great impact for me.)
Subluxation and cerebrospinal fluid dynamics - things they’re researching
Okay, so firstly, there were so many fun/good/enjoyable lines in this piece. I copy and pasted a few below.
So Nighty Gaslighty Nurse can bite me.
Do you know why you’re here? Do you know the month & year? I could make a snarky poem from that, don’t tempt me, dear…
So…” My fangs drip a little anticipatory drool
he doesn’t possess the Almighty Diagnosing Powaaaah.
Secondly, You made such a good point about just wanting some to say “honestly, we don’t know”. Like why the frick can’t doctors ever say that? I mean, who are they trying too fool!? Of course they don’t know! That’s why they haven’t fixed us yet! Haha
And finally, I found this piece so satisfying in that not only did you get a few answers but tnay the nurse actually had a genuine conversation with you where you felt heard. It is amazing how much we can appreciate something like that when some many other professionals treat us so poorly!
Great read Alexx :)
I'm sorry you've been having a hard time. But very happy that you found someone to talk to you. A medical professional that leant towards you, instead of away. I wish you sleep and health with all my might.