6. The Diagnosis: What's Going On With My Brain
After 24 years, the pieces of this mystery start snapping together at Mach 10
CONTINUED FROM:
—THE NIGHT NURSE - Employing the arts of self-defense—against my medical “care”-giver.
EDITING NOTE: Ugh. If you read that last piece before I had the chance to edit this one (I actually wrote them out of order—Gaslighty Night Nurse was the hardest one to write), I just realized that it wasn’t lunchtime when The Beastie and I devoured that cheeseburger. It was dinner. For lunch, I had ordered a mongo chef salad. Ummm…fail. In fact, it was so unsatisfying that I didn’t bother describing it in my notes. However, I did gush profusely about my dinner because it was so shockingly fab, which reminded me how un-thrilled I was about lunch as I edited today’s post.
Remember how my memory works? That the events of my days really do mostly get stored in vivid detail, I just need an external reminder to bring them up to the desktop? Well, here’s how lunchtime actually went after I reported the Night Nurse who had been so awful to me. It has been changed in the previous post:
The Beast remains in her dungeon, devouring the carcass of last night’s fiasco while I digest a…less than satisfactory salad. Limp lettuce, powdery eggs, tasteless tomatoes, nasty cukes. Gah. Whatever. The Beastie still licks her claws clean from the decisive, take-no-shit way I handled such mistreatment. As such, I deftly order a cheeseburger for dinner and hope it drips down my friggin’ chin.
Rest assured. It will.
MAY 7, 2024
My 5-Day In-Hospital Continuous EEG with Video Monitoring: DAY 2
12:52 p.m.
The man in charge of overseeing my care and communicating with my neurologist throughout my hospital stay is not a doctor. He’s the Head Neuro-Nurse, but he is the most informative, diversely knowledgeable, well-spoken and personable health care provider I have ever experienced in all my decades of dealing with Neuro-Adventures.
Actually? No. In my whole life.
I wish I could switch to him permanently, so he could be the person in charge of my neurological issues from now until the day I die.
He’s The MANN, so that’s what we’re gonna call him.
Wut. That’s short for “The Most Awesome Neuro-Nurse.”
So The MANN comes in to inform me that the big seizure I had last night did not register any epileptic activity. Neither did any of the gazillion other myoclonic micro-blips I’ve had nonstop every time I try to sleep since I got here.
Upon hearing this news, most of me cheers in overjoyed relief! I am now one step closer to an official verdict of no heavy-duty meds, no yoinking of my driver’s license, no brain surgery, and no further probing of my skull.
And yet a sliver of disgruntled disappointment niggles. There’s some despair in there, too, because if it’s not epilepsy, then
WHAT IN TWELVE HELLS
IS CAUSING THIS?!?!
And more importantly,
how do we make it stop?
BLOODHOUND ON THE TRAIL
As always, big puzzling mysteries like this require big research, so I whip out my handy-dandy phone and start a new search: NON EPILEPTIC SEIZURES.
In truth, this search is not new. I’ve hunted for information on this trixxy little malady for years. The last time I did a deep-dive into it was after my second neuropsych exam in 2020. Back then, there was barely anything online about it except for some very vindicating and relief-inducing articles about how “people having non-epileptic seizures are NOT BIG OLE FAKERS so stop treating them like they are, yo!!!!!!”1
It was really similar language to what my examining neuropsychologist wrote in her remarks when she determined that, not only did I need to be seen by a neurologist, but that I needed to have significant trauma therapy to see if we could clear up any of the emotional static in my overloaded brain circuits. Her hope was that this would halt, or at least reduce, all my neurological symptoms, including the seizures I’ve had since 2001.
To conclude, she went out of her way to remind anybody reading that report that, if my seizures were found to be non-epileptic, this is still a serious condition. That I’m not just an attention-seeking liar who needs a padded room, a woobie, and a Valium before she whines herself to death, while dragging everybody who has to put up with her along to the Underworld.
Well, after two years of trauma therapy via weekly EMDR, indeed. A bunch of my PTSD symptoms were reduced or eliminated, along with a great deal of my brain static. Unfortunately, this caused no change in my neurological symptoms like seizures, migraines, dizzy spells, blackouts, or meltdowns/shutdowns.
In fact, after the fall down my stairs in 2022, which included another concussion, and the toxic asphyxiation episode two weeks later, followed by 9 months of hammering by three government agencies as they tried to weed out Covid malingerers, all those neurological symptoms increased to the worst frequency and debilitation I’d experienced since getting blasted in the face by a big ole fist in 2012. I finally wound up in the emergency room for a CT scan, which sent me down the rabbit hole of all these brain tests.
So, nope. Although helpful for PTSD, EMDR didn’t “fix” my seizures.
Neither has two more years of a different kind of trauma therapy which uses a combination of CBT and IFS, among a few other techniques.2
Which is the biggest reason why I really needed an answer to the question of, “Are my seizures epileptic or not?” Now that I had my answer, I expected to only develop more questions because, even though non-epileptic seizures are as common as multiple sclerosis, there is an abysmal lack of interest in studying them.
Probably because there are no handy machines that can test for them and come away with a definitive, “Yes! This is what the patient has, and here is what you need to set the dial on the treatment machine at.”
So as I lay in my hospital bed, scrolling Dr. Duck-Duck, imagine my shock when only a few minutes of renewed research into non-epileptic seizures leads me to a legitimately useful video. Whoa…useful? And compassionately informative? In fact, it is so revolutionary in its usefulness that it drops my jaw.
This is the best geeky AND compassionate explanation I’ve ever heard for what they’re pretty sure causes non-epileptic seizures like mine:
“PNES” is such a loaded term, and they’re seriously considering phasing it out because it’s got such a stigma attached to it, even in the medical community and NeuroLand. 3
How could it not, with the word “psycho” in it?
Because that is what we are constantly called. Crazy. Insane. McFakers. Whackadoo. Attention seekers. Weaklings. Whiny snowflakes. Crybabies. Bipolar. Hypocondriac. Hysterical. And of course…
REE REE REE!
We don’t like “hysterical,” “pseudo,” “fake,” or “conversion disorder” any better. Once we hear the eye-rolling, dismissive “only” attached to the adjective “functional” when sneered by medical staff as they shoo us out the door to make room for the people with “real” medical issues, “functional” can go suck rope, too.
You remember how I was treated after my CT scan in the emergency room, right? And in the emergency room the night I got rammed by a drunk driver? And my first neurologist’s reaction to learning that I’d had a “normal” or “uneventful” EEG in 2013? Same deal with the Night Nurse when all the stress of the past 24 hours (24 years) finally blew its top again last night.
Naturally, after I have a chance to mull on The MANN’s good news/bad news, the Night Nurse’s snarky comments and the decades of pot-shots from the myriad of her ilk start seeping into that semi-dark hospital room like the nasty Shades from Fever. 4
Growling, malevolent pools of darkness slink across the floor from one shadow to the next, closer and closer to my bed. These nasties will suck you dry until there is nothing left of you but a parchment-thin husk to rattle free of your clothing, jewelry and shoes, then blow away on the wind. They will eat anything alive they can catch.
This is what stalks me in that room.
“She’s totally lying. I work in her chiropractor’s office. I’ve seen her medical records and there is nothing wrong with her. She’s just milking this for a pity-party.”
“Well. Let’s just put you on this Black Box bipolar medication and see if it helps.”
“Oh, hush! That can’t possibly be hurting you.”
“WTF! I thought you were trying to make an online dance school. Now you’re trying to make money off your injuries?”
“What is she even doing on this floor? She was actually scheduled for this EEG?”
The Nasty Night Nurse’s words all blend with a half-century of being told that my experience of the world couldn’t possibly be legitimate. Or that I’m just too weak to hack it. Or that I’m a liar-liar crying, “Fire! Fire!” when nobody can see the smoke only I seem to be smelling, so now I’m doing it to myself.
Why ARE you here doing this test? See?!?! That Night Nurse was right. You are a complete waste of this hospital bed and all these resources. You didn’t need to take up this space when there are people with ACTUAL REAL PROBLEMS! Why the fuck did you waste everybody’s time and money! You are such a waste of food and air! You are—
*Record player screeeeeech!*
BULLSHIT.
What a bunch of repeated, shit-flinging monkey-see-moneky-doo-doo abusive crap.
This is just 24 years of “But You Look So Good”-itis. It is nothing more than a neurodivergent’s chronic experience of being gaslit by the world. It’s nothing more than half a century of “Hysterical Female Syndrome” steroids with “You Don’t Look Autistic” frosting.
So into that shadowy room, I flip my middle fingers and snarl, “Fuck this.” I put my phone on Do Not Disturb, curl up, and get snuggly under my own blanket to get some much needed rest.
Hahahahaha.
Okay, fine. To in get some more twitching.
1:08 - jaw slam
1:21 - 2 flashy spine jerks in a row
1:29 - cheek twitch n low back
1:39 - another jaw - blah.
I snag my phone again to do some more research. Watch some more PNES vids.
2:19 - try to sleep again.
3:02 - Whoooooahhhh! I finally passed out for 40 whole minutes! Go me! A full-blown, USDA Prime Cut power purr! I try to sleep again, can’t, fart around on my phone a little more—play, not research.
They never did bring the half-dose of headache meds they ordered yesterday morning, so I ask that, since they got what they needed—me having all these consecutive mini-myoclonic seizures as I try to sleep, as well as one of the big ones—if I can finally have some Tylenol. My cool little nursing assistant: “Dooood, why didn’t you say something if you were in pain?”
Me: “I just figured I wasn’t allowed to have it yet since they never brought it. I thought you guys must be trying to overtax me so that we could get the symptoms rolling more quickly.”
Her: “What? Nooooo. We would never do something like that without warning you. If you have a headache, of course you can have some Tylenol.”
Me: “Shweeeeeeet.” Tiny-cat voice: “Yes, please.”
She ups the order to a full dose.
3:47 - I lie back down to wait for my Tylenol—spine jerk!
Annnnd I’m back awake. When she comes back with the Tylenol, she takes my vitals. My blood pressure is way up, and that’s not usually a thing with me. If anything, I usually have low blood pressure, but it has been steadily climbing since I got here.
Since I’m wide awake, I move myself over to the lounge chair with my computer, now that I’ve been cleared to ambulate by myself, and they’ve remembered to turn my bed’s sensor alarms off. So now I’m chillin’ in tha chair with delta waves. I just start to fall asleep—
4:43 - R hand. Totally whacked the friggin’ loungey chair. Ouch.
After a few more of these, I crawl into bed. Since EEG Crew has gotten to see both kinds of seizures I came here to record on the ‘trodes, there isn’t such a dire need to be specific about what I’m experiencing. So I hope that, if I don’t push the EEG buttons and document all these episodes every time they happen, maybe I’ll finally be able to crash out.
No dice.
I still only doze with the same frequency of myoclonus jerks I’ve been having since I got here. At least they’re really subtle now. Mostly in the base of my spine or in my thumbs/one finger. Unfortunately, they still come with the big head rush, so they still wake me up. Blah. But they’re way less sharp of a jerk. Maybe I’ll actually sleep tonight.
Either way, I have dinner coming soon. Nommmm.
Beastie Need MEAT.
5:51 p.m. - Whuff. I set up my space in preparation for dinner to arrive, then lie back down and have a few more episodes. Joyest of joys! I chomp the side of my cheek—thankfully not hard enough to pierce. I mean, c’mon, body. I know you’re hungry and require carcass, but this is ridiculous.
5:58 - bigger L leg jerk
6:00 - neck jerk
6:39 - FEEEEEEED!
This burger is flippin’ fabulous! They cooked it to purrr-fection for me, and it’s slathered with cheese, nice lettuce, and a juicy tomato. Totally different veg from this afternoon’s gross salad. And the burger itself? Seriously? This is hospital food? I am soooo getting another one of these if they don’t let me go home early.
EUREKA! IT ALL COMES CLEAR.
I am about three-quarters through devouring my carcass when it slams me between the eyes.
Not another seizure.
The lightbulb of AH-HAH.
I am so stunned that I almost drop my burger!
(Almost.)
For a moment, all I can do is sit there, gob open, eyes huge and fixed on the nothingness beyond the foot of my bed. Once again, a shadowy, blank white wall plays the movie screen of my life.
Images. Sounds. Voices. Faces. Flash after flash like a strobing sequence of too many sepia-toned film clips spliced together, all overlapping and joined by laser-light transitions.
Drunk driver. My childhood bedroom. My boyfriend. My parents. That fucking tenth-year class reunion. That shitty little town. The woods. That fateful news about the worst of the fucking fuckers right there in my hometown. Family reunion. Everybody out to see me for the first time since my car wreck. First time I could fly home.
Home.
Hah.
That place hadn’t been home since 1997.
My first absence seizure happened right there in the shade of my parents’ backyard lawn.
My first head-snapping, spine-rocking, jaw-slamming seizure happened later that night. That disco ball. The laser light. Just one perfect, blinding shot into the eyeball.
After discovering the video about PNES, all the pieces have been swirling around in the back of my mind, so now I sit devouring juicy carcass. They start locking together like a puzzle that has been baffling me for decades. Snap. Snap. Snap. Boom. At last, after twenty-three years, seven months, and fifteen days, I understand.
I know why I started having seizures when I did.
I know what my Perfect Storm was.
All I’d needed was the puzzle box with the picture on it to help me put it all together.
UP NEXT: THE PERFECT STORM - The combination of conditions that incited my onset of seizures.
© 2025 Hartebeast
Table of Contents to this entire adventure:
The Truth About Non-Epileptic Seizures
Unraveling the Mystery - many are accused of faking seizures but PNES are just as disabling as epilepsy.
Trauma Therapies I’ve done:
EMDR - Eye Movement Desensitization and Reprocessing
IFS - Internal Family Systems
CBT - Cognitive Behavioral Therapy
One of the best books I have ever read in my life: The Body Keeps the Score: Brain, Mind & Body in the Healing of Trauma
Don't want to read the book? Here's the basic premise of what trauma does to the body and why talking about it, even in therapy, so often doesn't solve the problems: Short Version. Or Long Version by the author himself
The Fever Series by Karen Marie Moning - because amidst all this serious crap we need some Fae & Fever, yo.
Ohhh and also — “It is nothing more than a neurodivergent’s chronic experience of being gaslit by the world.” — great line!
As I read the first half of this I was totally feeling your pain in the sense that it is so frustrating when you get the all clear that it’s not in fact X that’s causing your issue. Because although that is good to know, the immediate question becomes, “well if it’s not X then wtf is it?”
But then, as I kept reading, I was so happy to see that after all this time, you may have finally figured out what’s been causing the seizures! Yay! :)