11. Results: After 6 months of brain scans, I see my neurologist again
What we learned from my CT Scan, MRI, EEG, and In-Hospital Continuous EEG with Video Monitoring
Ahoy and yaaaar, me Mateys!
On my country’s Independence Day, just after learning how many of we dastardly, worthless wastrels are about to have our food stamps and Medicaid health coverage detrimentally impacted or outright cut, I give you the final installment of this latest convoluted clown ride on the Good Ship Hartebeast.
Happy Fourth of July!
May 9, 2024
One day after returning home from my 5-Day 3-Day in-hospital EEG
8:05 am - And there we go. Success!!! Finally being able to just knock myself out with NyQuil and no Invisalign has reset my sleep schedule. I have, after four days of sleep deprivation and continuous micro-seizures, achieved my usual eight hours of uninterrupted corpse-impression. I don’t think I moved all night once I finally, blessedly conked out.
8:16 - Brain to me: “Don’t you dare give me caffeine! I will not be awake for very long. Just long enough go to the followup appointment with Primary Doc’s stand-in.” Dad had to totally remind me about that.
And now…for my next daredevil acrobatics: reclaim the brain.
In all, it will take over two weeks for my classic Brain Crash Symptoms to begin tapering off:
Canker sores that balloon up to the size of dimes
Raw gums and tongue
Full-body inflammation
Wishing I could surgically remove every one of my joints
Muscle spasms
Washed out color in my face, except the dark circles under my eyes
Constipation alternating with diarrhea and upset stomach
Acne, rough skin patches, and that weird pin-prick, fire-itching rash on my arms that nobody’s ever been able to diagnose
A particularly noticeable…ahem…change to the consistency, texture and hue to my feminine discharge—NOT a yeast infection or any other of the standards, it’s just always what happens when my brain short circuits like this. I know. You needed to know that. Thankfully, it’s odorless.
Unlike my sweat glands.
That tell-tale, weird, nasty stench in my right armpit. (Yes, only the right. At least this didn’t go on long enough to spread to my groin scent glands and finally the left armpit this time.)
Alarming lapses in memory. (Good thing I write everything down and my people know that they’ll have to remind me of everything for awhile.)
Stuttering, stammering, or outright losing the ability to form words.
Numb limbs. One collapsing leg.
Confusion, irritability, brain fog, sluggish or glitching cognitive function.
The stake through the back of my skull, the skewers through my eyeballs, the vice around my skull, and a brow-ridge that presses down over my eyes to block half my vision.
BIG. SLOW. HEAVY. HEARTBEAT.
Noticing—huh…I have become the quintessential mouth-breather. Jaw hanging loose. Eyes glazed. BIG…HEAVY…AUDIBLE…PANTING…
Insomnia cupcake with exhaustion filling, fatigue frosting, and burnout sprinkles.
That spot on the top/back of my skull went numb again (you know, in the same vicinity where my teensy blood vessels are becoming blocked and causing damage that shows up on an MRI)
And of course, dizzy spells, shutdowns, meltdowns, blackouts, needing to sleep 2-5 times a day, and everybody’s favorite: seizures.
At least we now know: they’re the non-epileptic kind.
It will take me several more months to stop stress-shedding my hair.
It will take me over a year to drop the eight pounds I gained during those three days in the hospital—what am I saying? It’s over a year as I post this and it hasn’t happened yet. Eight pounds in three days?!? When I went into the hospital, I was 128. When I came out I was 136, and I hadn’t eaten more than usual. In fact, it was less. I also continued my PT exercises religiously.
Apparently stress and sleep deprivation really does impact things like weight gain. Who knew?1
The lowest I’ve been since that brain crash was 134, but then I had knee surgery in January, and had my secondary knee injury misdiagnosed by my surgeon which set my PT back by four months. So I’m not terribly worried about it.
I am, however, quite peeved at the reasons for the spontaneous 8 pounds. (Drunk driver, assaults, rear-ending dillhole not paying attention at a stop sign, ASSphyxiation, and all the other PTSD-inducing felonies, misdemeanors and general assholeishness that has been wreaked upon my body.)
Bite me.
What can I do besides what I do? Eh…? It gives me stuff to write about. It gives me stuff to dance about.
Loud mouth-breather inhalation…
Louder, irked, mouth-breather exhalation, complete with throat-rasping and eye-roll…
There ya go. Now you know exactly what that sounds like.
🤪🙄🤪
WHAT MY NEUROLOGIST HAD TO SAY ABOUT ALL THIS
May 16, 2024
After a GPS clown-ride from hell in the middle of a downpour, Dad and I make it to my neurologist’s office. This, blessedly, cuts short the classic waiting room wait time. Woot! They bring me in, take my vitals—my blood pressure is up a little from all that, which is odd for me. I classically have ideal-to-low blood pressure.
The staff and I have a nice commiseration over the way all GPS systems throw anybody under the bus when they try to find this place, as well as the general lack of communicative compatibility between their computer system and the EEG calendar, and the high turnover rate in this office due to all this tomfuckery. Which just creates more tomfuckery, because it’s always poor newbs trying to navigate these problems from scratch, every few months.
As such, I am treated to immense apologies for this latest in all the issues I’ve had trying to even get to this appointment. But I’ve been in fuck-it-duck-it, shrug-throw-hands-up-and-laugh-so-I-don’t-lose-my-shit mode since Winter 2023. Whatever, man. At this point, I’d rather save my Spoons for solving significant problems.
Stressing about small shit will not help my brain’s teensy clogged blood vessels either.
Eventually, my neurologist comes in.
One of the first sentences out her mouth is the correction that is becoming a frequent response as time goes on: “Those aren’t seizures.”2
“Oh,” I say. “I was told they’re called PNES.”3
“We don’t call them that anymore. They are ‘events.’”
I lift my head. Lower it. Ah. Got it. YOU don’t call them that anymore.
A bunch of other people still do. And a bunch of people take this change in terminology as license to call us big ole fakers, deny us proper medical care, and/or throw us in psych wards with the branding of “crazy” and “attention seekers,” but thanks for the attempts to ward off further stigma.
Who knows what the official term will morph into next. I mean, there is that whole “psycho” in “psychogenic,” so I will never argue about ditching that part of the lingo.
As my neurologist gives me a brief explanation of these “events,” she follows up with her determination that what’s going on with me has nothing to do with neurology so there is nothing more she can do for me.
At least she won’t be revoking my driving clearance or prescribing heavy-duty anti-epileptic meds—which is the best news she could give me.
As she speaks, I can’t help but wonder if another reason that they’re changing the terminology is to create a clear delineation between when they have to revoke a driving clearance and prescribe those meds vs. not by drawing the line between “seizures” and “events.”
I dunno.
Whatever, man.
I have bigger fish to fry than semantics right now. You know, little things like figuring out how to stop having these “events,” reclaiming my hospital-scrambled brains and ravaged body, keeping my blood vessels from constricting further so I don’t have strokes, continuing the reclamation of my life…
As she talks, I find myself supremely grateful for my obsessive nature, my rabid proactivity regarding my own health care, and my Curious Monkey’s ravenous need to research all this stuff, because if I had come into this appointment cold, knowing nothing or very little about this condition?
Her cool, brief, stunted educational manner about what it is, what causes it, and what I should do next would have left me confused, alarmed, possibly freaking out, and having no idea what to do next.
Thankfully, that’s not me.
I don’t bother arguing with her assessment that this is 100% a psych issue. From her bristly, scything, and cat-herding reactions to my first little probes about any correlation with my neck and jaw issues, the potential of cerebrospinal fluid backup, and the medical world’s inability to diagnose Chronic Traumatic Encephalopathy with anything other than an autopsy, I can tell immediately (after decades of experience with these reactions) that she is not remotely a Curious Monkey about any of this stuff, the way The MANN is.4
Nope. She is 100% Horse-Blinder Neuro-Track. That doesn’t mean she’s uncaring. She’s not. She just solves what she can solve whenever she can solve it. Period. Considering the fact that she is one of the only neurologists who treats things like TBI and seizures—🙏and also takes Medicaid🙏—in the entire region, she doesn’t have time for anything else. In her book, I am simply a patient who absolutely needs help, and I am in the wrong building for that. Next.
That’s cool.
Whatever.
I got this.
Thx.
She also brushes off the fact that I had developed microvascular ischemic disease5 by the time I was in my forties (in other words, the teensy blood vessels of my right parietal lobe are so restricted that it has already caused damage to my white matter). “Oh, that’s just aging.”
“Um…yeah.” I blink a few times. “Advanced aging. Don’t you normally see this in people who are in their seventies to nineties? If it had already caused damage by the age of 50…”
She shrugs in confirmation and assures me that there are all sorts of other factors that can cause this in younger people.
“Yeah, but I don’t have any of those markers. Like…not one.” I list them off.
She blinks, stares at me for a second, nods, and moves on.
Well, all righty then.
I mean, again. Absolutely nothing she can DO for me about this disease. By her reaction, I wonder if she’s ever considered HOW this is caused in someone who doesn’t:
smoke
have high cholesterol
have high blood pressure
have chronic kidney disease
have diabetes
have obstructive sleep apnea
Why should she? It is not her job to ask HOW an anomaly like me happened. She’s not a researcher. She’s there to treat what she can treat, and she can’t treat me for this. Since I’ve already done the research, I don’t need her to explain anything more about it.
She informs me that, if my regimen of cognitive overload-reduction procedures, neck-healing, meditation, and the occasional popping of OTC migraine meds ever stops working on my never-ending headaches, we can officially address them with prescriptions.
I thank her, and say that I’ll let her know if I ever need that.
And I will.
IF.
Not like chronic migraine isn’t on my radar as a potential culprit for some of my symptoms.
“Do you have a psychiatrist?” she asks.
“No. I have really great, effective mental health practitioners I see at various times for various issues. I go to intensive trauma therapy once a week and have for years. It’s doing my PTSD a world of good, and my current therapist has a psychiatrist she is ready to recommend to me if we determine that I ever need that kind of help.”
You know.
The prescription pill-popping kind of help.
That’s the automatic knee-jerk answer to everything in this office, and I’ll have none of it unless I ever determine that it would do me some good. Since my neurologist is not giving me any sort of concrete, scientific reason why I should head back down the psyche-med rabbit hole—a hole that made me emotionally flatlined, then more erratic and volatile, even downright suicidal on the multiple occasions I’ve given it a try—I am not inclined.
But she is understanding and sensitive to my drug sensitivities, so she’s not even recommending that I DO start taking any meds. It’s simply an option if I want to explore it and—bless her—she’s not pushing. So I thank her profusely for everything she did for me, and I leave.
Because really, I am deeply grateful.
She changed the entire trajectory of my neurological case. More like an archeology dig with a side dish of Clue Game. Was it the Drunk Driver on the freeway with the two-ton speeding bullet? Or was it the Casanova Cowboy in the bedroom with the open window and his bashing palms?
I suspect that she suspected my seizures were non-epileptic from the first time she saw me. I suspect that the most recent neuropsychologist who tested me suspected that, too.
So did I.
At least, I hoped they were non-epileptic.
Not that this means it’s easier to address and treat, much less cure. It’s not. It’s significantly more difficult and tricky, because they don’t have tests that can irrefutably confirm it and pinpoint its causes, and they don’t have any sort of straight-up, tried-and-true treatment regimens.
But the good news: with the information we have about PNES—excuse me, my non-epileptic events and psycho-bitchitude, I’ve been instinctually doing everything that I should be doing for this condition pretty much from the start.
Trying to get my bones put back where they belong so my blood, neurological synapses, and cerebrospinal fluid can flow properly.
Trying to train my soft-tissues to hold said bones in place on their own.
Trying to clear out half a century of PTSD layers from the tangled spool box that is my mind.
Learning new sick skillz to eliminate or at least reduce stress, along with the current chronic traumas in my life that make it impossible to heal PTSD while the abuses are still ongoing.
Learning new sick skillz to reduce the likelihood of acquiring additional PTSD layers and TBIs while not living in a bubble. (I’m still breathing, so this isn’t fully in my control.)
Learning new sick skillz to reduce my stress reactions to the fact that there is way too much on this planet that isn’t in my control.
Learning what is the original hard drive and operating system of my base neurology, vs. what is trauma creating viruses in the background, vs. what is physiological injury.
Saying fuck-it-duck-it when we can’t figure out which is which, and just protecting my darn self as best I can because it all manifests as the same crap.
Learning better and better ways to live with and heal this shaken-and-stirred spool box, along with the dog dookie that make my meatsuit short-circuit.6
So What Now?
In the weeks after receiving confirmation that I do not have epilepsy, I wrote to two of the primary institutions that research PNES—one neurological and the other psychological. In these letters, I informed them of the meticulous real-time and historical data I have compiled about what it’s like to live with this condition, and asked if there was anything I can do to help further their research.
The neurological institution expressed their concern over everything I’d been through, thanked me for my interest, and suggested that I try my local university level.
Since I’ve already done that and been treated like I’m whackadoo or simply a pain in the butt with a bad attitude (because I am not calmed by their religious platitudes and because I Tell It Like It Is—the amazing, the crappy, and the meh), I can check that off my list of potential places.7
To my stunned affront, it was the psychological institution that deemed my message not even worthy of a response.
Why I still have the capacity to be surprised at this point is a source of my eternal bafflement.
So I now have a new list of potential research institutions and individuals to contact and offer up my Curious Monkey Lab-Rat services.
Maybe I’ll find it before I croak.
Otherwise, whoever cuts open my brain will have unlimited access to my experiences so they can take up playing this game of Clue in my stead, with much better resources than I have.
So there ya go.
There’s my 5-Day 3-Day In-Hospital Continuous EEG with Video Monitoring adventure.
You can find the whole thing here, along with what put me in that hospital room to begin with:
UP NEXT: EXPERIMENTS IN CHIROPRACTIC 1 - UPPER CERVICAL. Wondrous healing ensues when I stop doing high-impact rack-n-crack and start actually putting my warped spine back in place.
© 2025 Hartebeast
Wording non-epileptic seizures as “not real” (meaning they have no neurological correlate) or “psychogenic” is often upsetting and can cause resistance.
“Many patients don’t understand how such a physical symptom could have a psychological origin,” said Markus Reuber, professor of clinical neurology at the University of Sheffield, UK. “I don’t think that all doctors who use inappropriate terms think of these seizures as faked,” he said. “However, the language they use can be understood in this way. This can be very damaging to patients.”
“A neurologist may tell the patient they need therapy and leave it at that,” said Lorna Myers, director of the PNES Program at Northeast Regional Epilepsy Group in New York. “That sets the patient up for failure. Your general practitioner doesn’t tell you that you have cancer and then make you find an oncologist.”
💥 BOOM. Exactly.💥 But this is what I’ve been expected to do for decades. WHEN they even believe me.
~From: Inside the world of PNES
Learning better and better ways to heal, cope, survive and thrive:
My art therapy, nature, dance, writing & nerd-out adventures
Actually, since drafting this post, things have been afoot in the past week that may produce some positive movement on this front. My Spockly eyebrow is raised. My star-eyes and warm-fuzzy hearts are enacted even for the attempts and consideration that I’ve received. So…we’ll see. I’m not gonna say anything else about it until I have more information and see how it actually goes. But my fingers are crossed.
Fuck man! If this story was a fairytale and I was your editor, I would have said to end with the last chapter about The Mann because even though you were very fair and measured about it, your neurologists sounds like a bit of (and excuse my Australian) cunt. Hehe
I feel like somewhere out there, there is a research who would be so thrilled to study you and all your curious monkey notes and theories, and it’s like, you’ve just gotta find em. Here’s hoping you do. :)