After 13 Years, I Finally Get An EEG & Neurologist
Bwahahahaha! Good one.
2013: MY FIRST EEG
I barely remember my first EEG. My journal tells me it took place on July 30, 2013, just before I moved to Arkansas. I remember that I was reading Karen Marie Moning’s ShadowFever in the waiting room—but only because, when I re-read it last year, I discovered the appointment card for that EEG, and because references to that series are all over my journals from that time period.
During my re-read, I discovered that the plotline of that book and the one before were pretty much wiped from my memory, unlike the first books of the series, which I originally read while I was not having chronic seizures. So I remembered a lot about them. (I mean, bonus—the last two were like reading new books that I didn’t have to buy—woot! Movies I’ve only seen once are like that, too.) 🤪
I also remember the chair they put me in to affix the electrodes to my skull. A whole rainbow of ’trodes, and a chair like a fancy, cushioned reclining lawn chair with arm rests.
That’s it. That’s all I remember.
My journal informs me that they strobed me. Even now, I don’t remember that, which is a rare thing. Usually reading my own words will dredge up memories from where they’ve been misfiled in those dusty, dank, filing cabinets in the basement, or outright locked in The Dungeon.
My last neuropsych exam in 2020 showed the proof of my experience. Memories go in. They do usually get stored. I just have trouble bringing them up to the desktop on my own. It takes some sort of external stimulus to trigger them.
Except when my brain is under duress. Then they’re more likely to be Obliviated.
You know, neurological duress like like being subjected to a series of ever-speeding, ever-intensifying types of strobe-frequencies during an EEG the day after I spent eleven hours trying to get home from Loveland through traffic and construction, followed by a wing chun class, and dinner with out-of-state friends in a loud, crowded restaurant.
The next morning—the actual day of my EEG—my journal tells me that I hung out in a sweltering summer car with these friends and their huge brood of very loud, very shrieky, super cute, but brain-melting children. Then I did three hours of karate and hit the EEG on the way home.
I drove myself to it all.
ARE YOU OFF YOUR ROCKER?!?!
Ummm…I pretty much was. Being that neurologically compromised tends to prevent one from making Smart-Girl Decisions.
Decisions = executive function.1 A fully-functioning frontal lobe is required to do that shit well. But hey, I’d been told over and over and over and over—inhaaaaale—and over that I didn’t need a neurologist, or any brain scans to find out why I was having seizures, so why wouldn’t I have just…
Gone about my life and done what I needed to do?
The fact that I only remember a flash of the kids and the car, and barely remember having the ‘trodes glued to my scalp…
Yeah, that says it all. So does my journal. I was very, very afraid that they would yank my driver’s license, put me on heavy-duty drugs that would give me all sorts of awful side effects, and that it still wouldn’t help me.
Because nothing ever had.
To my frustration, that EEG turned up “normal.”
It’s also called “uneventful.”
The techs administering the test assured me, “Don’t read anything into that. It only means you didn’t have an epileptic event during these couple hours when you were hooked up to the electrodes.2 There are many kinds of seizures that don’t show up at all on EEG, so please, when you get to Arkansas, follow up with a neurologist.”
And so I did.
Bwahahahahahaha!
2014: MY FIRST NEUROLOGIST
I would put this guy in his fifties or sixties. White hair that was once blonde. Unkind eyes and barely an attempt to smile. When he did, it was as cold and insincere as his demeanor.
I disliked him from the moment he opened his mouth.
But he was the only neurologist in the entire region of Northwest Arkansas who would see me while I was on the Arkansas version of Indigent Care. My journals are completely censored during this time, but I can translate what I was really saying underneath the glitter and confetti sprinkles.
You see, Your Honor, what happened was…
Early in my arrival to my new home state, I’d met this life-coach who introduced me to the concept of “only speaking and thinking in the positive” because “if I only speak and think in the positive—nay, the happy, the blissful, the super-duper wonderful—that is my signal to the Universe that this is what I want, what I KNOW I deserve, what I am open and ready to receive. Thus will I only ever receive the positive, the happy, the blissful, and the super-duper wonderful in my life. Joila!”3
Inhaaaaaale…
Exhale.
Yeah.
I can tell how hard I had to work to convince myself to trust this dude with my health and my precious brain by how many things I had to paint over with the “positive” versions of it in my handy-dandy bullet list of affirmations.
“He cared enough to revoke my driving clearance—to keep me and everyone else safe on the road.”
Truth.
“He listened and cared enough to prescribe seizure meds after 14 years of apathy and pooh-poohing.”
Truth. (Redacted.)
“He is a scientist…a doctor…a man. I speak logic very well. *More convincing, convincing, convincing myself of all the reasons not to just call him a cold, condescending jerk…* I am able to communicate in his language and teach him a little bit of mine.”
Truth. I am hyper-logical, just like I am equally hyper-emotional. One of my nicknames is Spock. Even so. That’s a whoooole lotta words to convince yourself there, Sparky. I mean Spocky.
“People get into the medical field because they want to help people live better lives. Even if they get into it for the money, they choose this medium for a reason. There are many other ways of making big bucks without half the hassle, stress, heartbreak, etc. He really does care.”
Yeah, sweet-cheeks. Keep tellin’ yourself that. Maybe if you write it in that journal over and over enough, you’ll be able to convince yourself. Because you ain’t convincing me.
This high-level health “care” professional “cared” so much that he prescribed an anti-epileptic medication without issuing a single test to show that I have epilepsy.
He “cared” so much that he wrote this prescription in spite of the fact that I had expressed my extreme hesitancy and concern about taking any sort of medication due to my history of drug sensitivity and allergies, which is a staple of my maternal bloodline.
He “cared” so much that he didn’t bother informing me about this medication’s Black Box Warning.4
Know why it has that?
Because one of the side-effects is lethal necrosis.
LETHAL…
NECROSIS.
After twenty minutes of “listening” to me with skepticism, hedging, looking down his nose, glancing at the clock, pursing his lips in disbelief, and shrugging in annoyance, he finally prescribed this medication “just to see if it helps.” I was on my way out the door when he added, “Oh. And if you happen to come down with any sort of rash, you might want to have that checked out. It can be kind of serious.”
KIND OF SERIOUS?
Check it:
Let’s look at this symptom a little more closely - with horrific pics! Be warned. And ooooh! Another type of medication that can cause this in people are penicillins, which we’ve known since the 90s give me…drumroll…A RASH!
Good thing I have a habit of doing my own research about drugs before I swallow them. Upon getting home and firing up ye olde internet, I also learned that this medication was, at that time, renowned more for treating bipolar disorder than as an anticonvulsant.5
Yeah. Exactly what his eyes said to me when he bothered to meet my gaze at all.
Annnnnnd that vaporized my ability to convince myself of anything positive about this health “care” practitioner.
(I will not call him a professional at this point.)
You do NOT prescribe Black Box anti-epileptics without reviewing a test that confirms flippin’ epilepsy, especially when that patient has informed you that drug-sensitivity runs in her family, and that she personally has a history of experiencing bad side-effects that are in the rare category!
YOU JUST FUCKING DON’T.
But he did.
I hope you know me well enough by now to be confident that I didn’t take his drugs. Neither did I ever go back and see him.
That means I also didn’t get to be treated by a neurologist again for another decade. From my first seizure in 2001, that’s a quarter-century of waiting and asking and being ignored.
Ridiculous.
Heck, no other doctor would even refer me to a neurologist until 2024—more th an three years after my new neuropsych exam delivered instructions that I needed one.
Speaking of my second Neuropsychological Exam…
The only reason anybody ordered that new neuropsych test in 2020 was because I utterly tanked huge swathes of the standard psych eval that was part of my application for the Vocational Rehab small business grant. In truth, it was more of a mini neuropsych eval, because it included tons of cognitive tasks, not just the psych stuff.
It was my abysmal ability to do memory, multitasking, math, and spacial translation that had the evaluator’s eyes flying open in shock. That, compared to other parts of the test that showed way above-average scores.
Naturally. I was a brainiac before TBI, and not everything has been damaged.
The test administrator cringed when she came in to give me the results, fearing that I would be upset. I just grinned and said, “Let me guess, you’re baffled by how horribly I failed certain portions of this test, compared to the rest of how I did.”
“Uhhhh…yeah.”
That’s what finally got me a new neuropsych test after seven years of asking for one in the wake of two new TBIs and debilitating seizures that caused more damage.
The results of that were clear:
I needed a neurologist. NOW.
I needed brain scans to evaluate, diagnose, and properly treat my seizures.
I needed major trauma therapy in the hopes that it would clear up some of my overloaded brain circuits and reduce my neurological symptoms.
(Spoiler: I did two years of intensive trauma therapy, took a year break, and switched to a different modality for another two years. Although this has been a miracle-worker for a bunch of my PTSD anxiety, triggers, hypervigilance and general stress levels, it did squat for the cognitive and sensory overload issues.)
It took three more years, and four different PCPs to finally find a doctor who would follow the instructions on that neuropsych exam and refer me to a neurologist.
This referral only happened because I wound up in the emergency room for a CT scan in November 2023 when my optometrist discovered that one of my pupils was fixed and dilated.
If you remember, that CT scan showed I wasn’t having an aneurism and I didn’t have a tumor. (“It’s naht a tumah.”) Which was really good news.
But that’s all it showed.
My optometrist’s office also forgot to send me with the paperwork, therefore, it is Law: I must have been a big ole faker-whiner-attention-seeker running to the emergency room because I needed a widdle huggy that day.
🤨
Yeah. Because I just love shivering for hours in the freezing ER, having chemicals jammed through my veins, and being bombarded by imaging machines. Super-duper fun times! 6
The MD who came to inform me of the CT results did the standard:
Sneer down nose.
Condescending non-smile.
Snippy, annoyed attitude at how much of a waste of everybody’s time, energy, money, and concern I am, when there are people with “reeeeeeeal” health concerns coming into the ER.
You know. Pretty much how the ER nurses treated me the night I got rammed by a drunk driver and started all this. Uphill, both ways, in the snow, Grinch stole my boots and my Christmas presents…
Yada. Blada.
But hey, for the first time in my life, this crappy treatment was actually witnessed real time by someone who cares about me. My dad was with me in the hospital room for all but the CT scan itself—and those techs were absolutely fabulous, like they always have been with me. So was the entire staff until that last, results-giving doctor. She had just come onto the floor and replaced the really awesome MD who had examined me upon admission.
My dad was PISSED to witness the way this woman treated me.
I just shrugged and snarl-laughed. “Yup. And that right there—that attitude is why my neurological issues have never been fully and truly addressed since all of this started. They have treated me like this since I was in the ER in 2001, because my skull wasn’t cracked open, I wasn’t in a coma, half my face isn’t sliding down my skull, and I battled back the ability to dance when they told me I never would. Oh yeah. And because I ‘look sooooo good,’ therefore I must be ‘just fine.’”
Beginning to understand why I NEVER STOP McSQUEAKING about all this, and I NEVER STOP TRYING to get the help I need, and I NEVER STOP TELLING IT LIKE IT IS? Because my teeth and claws remain clenched around the hopes that someday the right combination of people might learn about this all-too common phenomenon and ensure that it doesn’t happen to other people after me.
At the very least, maybe other survivors will know: you’re not alone. If you don’t have the ability to put this stuff into words, you can always just point to mine if I’ve given voice to your experience, too.
Because I am not remotely alone in this, and I am not remotely on the worst case list.
Think it’s maybe time to stop doing this crap to people? Maybe?
Mic fuckin’ drop.
So many hidden injuries, hidden illnesses, hidden conditions. Here’s another. Totally different condition, but the emotions are so kindred.
UP NEXT:
Now that you have a much better idea of why they finally sent me to that 5-Day EEG and why I’d been asking to be tested for decades, we’ll be returning to our previously scheduled program where Neuro Floor cannot believe that somebody who “looks as good as I do” needs to be there.
But I do.
© 2024 Hartebeast
The dangers of Law of Attraction: how easily it can lead to toxic positivity and falling prey to abusers and charlatans if it isn’t applied with a hefty dose of skepticism, critical thinking, goal planning with action steps, and a lack of self- or victim-blaming/shaming when desires and intentions are not manifested. (Or at least…not manifested in the way that was envisioned. Sometimes I have to take the long way to Grandma’s house through some abysses and bramble patches in order to get what I truly need, rather than I think I want. That’s also why I’m really clear about what I ask for, and that I tack on the What Is Best For Me and Everyone Connected To Me addendum.)
Instead of toxic positivity, how about emotional validation? While positive thinking is instrumental in recovery from injury, illness, and weathering all of life’s storms, toxic positivity is not.
Patient mindset—and the mindsets/demeanors of health care practitioners—matters in healing
My parents found out when I was like two that I’m allergic to penicillin. Apparently, my throat swelled up and I was struggling to get air in and I got this terrible rash! What you said just reminded me of all that.
Also, this piece, and many of your other pieces are a clear example of something called ‘epistemic injustice’ it is a philosophical term which I wrote a paper on at university for my philosophy degree. In the simplest terms I can put it, it is when someone in power, in your case a doctor or neurologist, treats your poorly in a myriad of ways because, supposedly, they have all the knowledge (and thus ‘power’) and the patient is seen as ‘less than’ and their cries for help are dismissed or their opinions and preferences (like being hypersensitive to medication) are invalidated because SUPPOSEDLY they don’t know what they’re talking about it. As you know from experience, it is actually a huge issue within the medical industry because of the power dynamics between patients and practitioners. And unfortunately, although not surprising, the people who are subjected to it the worst are often marginalised people, disabled people, women, ethnic minorities, and basically anyone else who doesn’t have someone else there to advocate for them and help keep the doctors in check. It’s fucked up and researching and writing about it was quite upsetting. But yeah, I just thought you might be interested to know that, incase you wanted to look it up. :)