A few weeks ago I did a DIY, 72 hour EEG which revealed that I was experiencing an impressive number of seizures
though I had no idea of this.
But that could be just another seizure.
My current neurologist believes that a lot of the actions I take are due to “seizures”. Not physical manifestations of trauma as I theorized which my therapist also bought.
Not trauma. Seizures. All seizures. Most epileptic. 👑
A close friend has long said that I should just go to Mayo and blow their minds. I never quite understood why she wanted me to be a test monkey but, then again, I am unemployed. If they provide shelter and food, I should email someone about coming in.
My brain wiring is different. Beyond the seizures, stimulants calm me while depressants energize me.
Red wine is like espresso, and coffee is a nightcap.
But all my little idiosyncrasies were fine as long as I wasn’t experiencing seizures.
Like… the ones I know about. The big ones.
And then I started to experience seizures, the big ones, like never before last spring.
We had decided to move to Pittsburgh. Thus, we were trying to sell our house and, consequently, we were living in an emptied, staged house which felt metaphorical since my parents had recently died and I couldn’t find a job.
Life had become one big, shiny, empty stage.
One night, I was home alone, looking at jobs, just in case, and found a position where I would gift people cars for Carvana.
That’s that company which has car vending machines and allows people to just sit at home and pick out a car online and then… someone would later roll up with that car and gift it to them.
And this was before the stay-at-home quarantine. This company had vision.
And that sounded like an awesome job.
HERE IS YOUR CAR WHICH IS NO SURPRISE TO YOU BECAUSE YOU CHOSE IT SO YOU SHOULD DEFINITELY LIKE IT AND BE HAPPY TO SEE IT AND OMG IT HAS A BOW SURPRISE SURPRISE SURPRISE!
I love giving people gifts. Other kids wanted to be doctors or the mayor and I wanted to be Santa Claus, the Easter Bunny or any of those mythical gift machines.
So working for Carvana sounded great.
Except that application process broke my brain. Maybe it was because my epileptic brain was all you can’t deliver cars for a living you’re fucking epileptic so it activated.
I started to twitch.
But, whatever. Twitch away, body, I am doing something here and I am going to finish what I am doing.
The twitches then became a bit more extreme.
A rational person would have simply put down the computer, walked up the stairs to the bathroom and taken a pill which was prescribed to address such symptoms.
But oh no. I was finishing this application.
And I did, to my stubborn credit. But, shortly after I submitted the application, I felt that “oh shit” feeling and jumped up, tossed the computer on the couch, dashed up the stairs, ran into the bathroom, took my medication and… walked into our bedroom and had a seizure.
I knew I had pushed it.
As I regained consciousness on the floor and, after I had sorted through the terror, I realized I was definitely not going to work for Carvana.
And I didn’t freak out about having a breakthrough seizure after years of not having one because… hey. My parents had both died, along with a few other people I really loved. It’s like I was alone in a new world.
And I was sitting in the staged aftermath.
I felt a seizure was in order. If the earth wouldn’t tremble and shake for the unforgivable losses of such amazing people,
So I gave my brain a break because… I’m epileptic. Seizures are how I most effectively express myself.
Yet, that breakthrough seizure launched a terrifying four-month stretch.
My generic Keppra (Levetiracetam) which had got me through everything had suddenly stopped working and it got really bad.
I mean, in that hellish stretch of time, I had a seizure at a Walmart.
That’s like checking an item off of an anti-bucket list.
That day we had to clean out the Airbnb we had been staying in as we had found a maliciously-haunted house to rent and… David and I had to sit in the car for a bit before we went in to start the cleaning because I was experiencing a hardcore aura.
So we sat outside and waited.
After some time, I felt it had passed. And so we got out and cleaned that Airbnb.
And then we went to Walmart to get something and the aura came back with trumpets and fanfare, booms and clatters and…
I looked for the best spot to have a seizure.
I chose the placemat aisle, mostly because one of the overhead florescent lights had burned out and that aisle was darker than the others and it was also the closest aisle.
I thought it was also unoccupied but, as I turned into the aisle, I saw a poor woman was standing there in the dark, debating patterned placemats.
“I’m sorry,” I whispered.
She looked up and then I don’t remember anything until I later regained consciousness in our car, and quickly felt crushed by the intense dread, debilitating panic and fear, leaving me conscious but unable, quietly pawing at the window, whimpering, blankly watching Pittsburgh move by.
Poor, traumatized David’s hands tightly gripped the steering wheel.
After this, I found that CBD gummies kill the temporal lobe seizures.
When I was again able to find humor, I enjoyed how this colorful little gummy face was killing the terror dead.
And I also doubled my Levetiracetam dosage as I had been on a relatively low dose previously
and this prevented any further tonic-clonic seizures.
This fixed everything. No more seizures, as far as I knew. Everything became balanced again.
Until Everything Became Terrible
We left Pittsburgh and moved back to Milwaukee where I was assigned a neurologist.
This person turned out to be the All Time Worst neurologist I’d ever had… a highly unorthodox practitioner who spent the majority of our twenty minutes together when I went in to get the test results talking about how I was going to die.
His bedside manner is not excellent.
And I’m not alone in feeling this way as those with internet access and the will to make it known have posted terrible reviews, echoing my own opinion of his neurological care.
Yet, terrible or not, it’s hard to shake someone telling you you’re going to die soon.
Kind of like how it may be a bit jarring to have a homeless person yell the same thing at you from across the street.
There’s always this small, irrational fear that someone knows more than you do.
So… my neurologist said I’d have to get off my generic Keppra right away and start taking the newest anti-convulsant medication approved by the FDA.
I was so bowled over by the “you’re gonna die” news I couldn’t even summon up my cynicism of this medical professional touting the newest pharmaceutical.
Like, sure, dude. Who’s paying you.
Instead, all teary-eyed and lost, I stumbled out of the office and made the executive decision to switch pharmacies to get the new medication which would hypothetically save my life.
If I was going to die, I was not going down as a patient of that Walgreens. No. I was going to die as a patient of this small, local pharmacy called “Life Change”.
So now it’s been a week on the new medication, Briviact. It’s so new it doesn’t have a generic alternative so if I ever stop being unemployed and unofficially disabled I will not be able to afford it.
I didn’t want to make the switch.
But… I was on a rather high dose of extended release Levetiracetam. And it had clearly lost some of its efficacy last spring which forced the dramatic increase in dose.
And then there’s the whole drama with how there are shortages of extended release generic Levetiracetam.
How can there be shortages of epilepsy medication?
WHERE ARE ALL THESE OTHER EPILEPTICS?? Does coffee make you tired too?????
So maybe it was a good move to switch to Briviact but it’s difficult to make a change when it doesn’t feel necessary.
In the same way a lot of cities/states/countries didn’t implement the Stay at Home policy until after people were really dying. #coronavirusisreal
But it’s difficult to deal with intangibles until they’re more tangible.
Hell, I was even starting to feel “normal”.
So for this Milwaukee neurologist to just pick up my fragile little frame of mind and shake it so violently…
“YOU ARE NOT NORMAL YOU ARE DYING!”…
it was jarring.
Regardless, I started this new, brand-name, “we-don’t-know-how-this-affects-fetuses-yet” medication, Briviact, to stop all the unfelt seizure activity I was allegedly having and
it’s been a week and… so far, each day I feel less alive.
Or maybe this is how “unearthly calm” feels.
And I’m waiting to see if it continues as it’s only been a week.
Am I having seizures (I know about)? No.
Am I alive? I don’t know. I feel really loose and… so very calm.
Since this feeling has sustained for the same amount of time I’ve been on the new medication, I’m starting to suspect it’s a side effect.
Is this medication revealing a better, stronger, fitter, happier me?
,So far, I feel… reprogrammed.
Maybe this is my one shot at being “normal”.
I can think clearly. Very clearly.
I had an issue with feeling physically tense: my shoulders were always “up”. My fists were often clenched.
Now I am loose and feel like claymation.
So how I feel is not “bad”.
I just feel like, if I was a birthday cake,
and someone suddenly scraped off all the frosting and decorative, edible elements… the candles… all of the color, leaving just the cake.
But it’s not as sad as it seems. I may look like “just cake” but I am actually Funfetti cake.
Because I’m still me. I’m just… calmer and less like a Muppet.
And I’m not sure how to feel about it. And I don’t really know because I’m in quarantine and can’t interact with others who know me and could and certainly would tell me if I was behaving differently.
I can think clearly. I still feel emotions. But I’m waaaaaay more calm than I was before.
I feel I stare more.
I also smile less.
But maybe my decrease in physical emoting will help slow my evolution into the Crypt Keeper.
In any case, I’m not having seizures. As usual. And maybe this new medication is just another medication that has accidental “other functions” like… reprogramming.
Rather than waiting to see if insurance covers that test, I’m waiting to get a paycheck for the work I did in making that test happen.
In any case, my neurologist does not provide pharmacogenomic tests. He sticks to the guinea pig method.
And, in any case, this has all been a bit much.
At the end of the results session, my neurologist said that, yes, my headaches, weight loss, intense fatigue, physical weakness, brain wave activity and the odd bad smells I smell could also be cancer but…
we’d need a MRI and, due to the global pandemic, that wasn’t going to happen any time soon.
And then: “Bye.”
I need a different neurologist who can deliver news and opinions… better.
Soooooooooooo… thanks to a kind soul (“Daryn”), I have been connected with a highly respected, retired neurologist who referred me to a colleague who will hopefully offer a second opinion and help explain all of this.
Cancer freaks me out because of my family history and I don’t want to be told I have cancer by my current neurologist who, in delivering that news, would say:
“You have cancer. You’ll die in probably six weeks. MARY!!! DOES THIS PATIENT’S INSURANCE COVER CHEMO?! MARY!! HOW MANY WEEKS DOES THIS PATIENT HAVE LEFT TO LIVE?!“
My neurologist yells to his assistant and the entire waiting room when he has a confidential patient question.
I need a less upsetting person to help me sort all this out.
Thus, in six weeks, I will see the neurologist to whom I was referred and be able to leave the your-life-is-a-snow-globe-and-I-will-shake-it-publicly neurologist’s practice.
And hopefully the neurologist will… help. ⚕
If I’m not dead by then.
3 thoughts on “Is This Chemical Or Am I Authentically Feeling This Calm/Honest”
Prayers for you daily dear Hilly♥️♥️
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Thank you, my beloved aunt! 🖤🖤