Ambulatory EEG Test #1 Result Day… I Am More Epileptic++ Than I Realized

Yesterday afternoon, my neurologist’s office called to tell me they downloaded the data from my first ambulatory EEG

and, consequently, my neurologist wanted to see me ASAP.

ASAP? Right away? Pronto? Okay. All right. Here we go. Okay.

My heart dropped to the bottom of my guts.

It’s not great when a medical professional calls you in a panic.

But then I calmed myself and figured the uproar was due to three likely reasons:

1. I did the DIY ambulatory EEG “wrong” and would have to do it all again and, it follows, I had obviously died sometime recently and didn’t know it and was now in hell, stuck in a torturous cycle. Probable.
2. My insurance wouldn’t cover the test even though they said it would be covered as the doctor deemed it “essential” and I was to be in more medical debt. Highly probable.
3. The doctor saw something worrisome and would prescribe another test because EEGs can only show so much so I shouldn’t freak out about shit that I won’t even be able to know for weeks. That one is obviously what I thought it would be because I had already applied my PhD in Counseling to calm myself. Most likely.

My internal dialogue is run by a built-in therapist/crisis worker.

So it’s like my epileptic brain is regulated by my mind which is rational and sort of a life coach.

Lucky lucky me.

WELL. In case it was #3, I also developed a “WTF Will You Do Immediately After They Give the Bad News” plan which was:

order bean tacos with a side of beans and rice + avocado from my favorite restaurant and also a pitcher of margarita with Patrón and then go pick it all up and take all that heaven home (global pandemic and all)

and eat, drink and put on YouTube videos of outer space and not think about any of this for a day.

Sometimes, there is nothing to do but eat tacos, drink margaritas and listen to delta waves music, wondering if that’s the music an epileptic brain would make if you shoved a speaker plug into it.

But I wasn’t quite there yet.

Therefore, armed with my WTF Worst Case Scenario plan, this morning I put on my mask and again reminded myself that I wasn’t leaving to go rob a place

and I drove to my neurologist’s office to be told that I am the

(ahem)

“most epileptic person (my neurologist) has ever seen in his twenty-five years of practice.”

I felt the compulsion to high five him because I’m American and I rule.

👑

But, at the same time, I didn’t really understand.

His eyes were wide when he told me how incredibly epileptic I was but I hadn’t before thought of having epilepsy as being on a scale of “more or less” as in:

Jane is more epileptic than Bobby, Pedro is less epileptic than John.

Rather, I gauged “how bad my epilepsy was” on whether or not the medication was working which mine had been doing so right from the start my neurologist gave me information that was new to me.

Now I knew I could win this epilepsy thing. Most epileptic. 👑🏆🥇

Bright side: for someone who hid her epilepsy from most people she knew for most of her life, I have so much more respect for myself now.

Dark side: it’s rare when something is even worse than expected. I specialize in Worst Case Scenario Conceptualization.

I walked into that office feeling very capable and “okay” and the neurologist proceeded to tell me: “You’re wrong. You’re not okay.”

And he kept talking. The reason he believed I was so epileptic is because my three-day EEG data showed that I have at least two seizures per hour of which I was not actively aware.

My brain is just on fire all of the damned time.

Fuck, I get bogged down with having to eat three times a day and my brain is light-saber battling at least two times an hour.

My brain is sitting on its couch and it checks its watch and, ho shit, it’s Fire Time.

And, also, who cares? I can hide brain fire. Brain fire doesn’t make a public scene. And it doesn’t bash my head on whatever is the sharpest edge in a room. Brain fire is kind.

What was most important to me is how I was not experiencing the life-threatening tonic-clonic seizures (thrash-around-and-traumatize-everyone-and-kiss-death kind)

and, thus, I can legally drive. With my medication working, I can drive and don’t really think about my epilepsy and feel as close as I’ll ever get to feeling “normal”.

I just can’t play trivia.

I don’t know if that has anything to do with my epilepsy, anti-seizure medication or what, but my inability to play trivia doesn’t bother me.

SIDEBAR: Also, I hate trivia because, while everyone else seems to know All the Stuff, and spend their time shouting out answers or vigorously filling up their answer card, I just sit there looking down at my empty answer card, not knowing any of the answers, feeling that my friend who said she was also shit at trivia and who is now erupting with possible trivia question responses has completely betrayed me and wondering how do I not know ANY OF THIS and am I even from this planet????????

Anyways, after my neurologist informed my that my brain was on fire all the time, he wanted me to stop taking my generic Keppra which had been, for me, working better than any of the anti-seizure medications I had tried before and to try a brand name medication…

no more slumming with the generics…

and

well, I was still road kill, found a few miles previous.

So my neurologist had to back up, slow it down, and tell me again how he wanted me to STOP TAKING the medication that prevented my brain from shaking me to death to try something new.

I’m not a big fan of “new” or shaking the boat if the boat is happily afloat.

No, that’s not me… here:

There I am.

And the last time I missed my evening dose of the generic Keppra I take which prevents me from thrashing around on the floor, I almost died.

It was New Years Day morning in a Chicago hotel where my husband and I had spent the night when I abruptly woke and told my husband to call the pharmacy which was next door because I had forgotten my medication but it was too late as then I went into a terribly long tonic-clonic seizure… it was apparently my first and only stasis seizure.

I turned blue from the lack of oxygen and, when I eventually woke after seizing “forever”, according to my poor, traumatized husband, I couldn’t taste or make sense of things all day long and… well, in short, I almost died in a Chicago hotel on New Years Day 2015 like a bunch of other people who probably died in that hotel for different and equally dramatic reasons.

So why would I even consider switching from the medication that works – the only medication that has worked so well I forget I’m epileptic and which has no noticed side effects and which attempts to murder me when I don’t take it – to try something new?

Why?

Because, according to the neurologist, if I didn’t, I would die.

As for Reasons To Do Something, that’s a pretty good one.

I guess my brain is having so many seizures (and I have to commend my brain for going through all of this so quietly and not making a bunch of drama about it) it will wear my brain and body out and I’ll just die.

“In your sleep, most likely,” said the neurologist.

My mind was desperately trying to apply rational thought to this fresh intake of data.

To sum it up, the results of the previous ambulatory EEG were interpreted by my neurologist to say that I was the most epileptic person my doctor had seen and it could be worse but we don’t know yet because we were living in a pandemic and he couldn’t order additional tests.

The news was so jarring I couldn’t even order margaritas.

As it was all too much for my brain to process, likely because it was quietly on fire, I couldn’t make myself go to the Walgreens I was constantly in battle with to fill the prescription for this new medication.

Therefore, with the reference of my neurologist’s office, I spontaneously went to this other pharmacy instead.

And the new pharmacy looked sketchyAF with its empty shelves and sparse appearance but I was the one rolling in looking like a bandit as I had not yet purchased a “real face mask” and was still wearing a bandana on my face so… the pharmacists easily processed and ordered my new medication and my new medication was covered by insurance (yay)

and I didn’t rob the pharmacy.

Never judge a book by its cover.

So I’m going to give this new medication a try when I get it and see how it goes.

I’m going to die in my sleep if I don’t switch medications, but if the new medication doesn’t control my seizures, I could die in a stasis seizure.

At certain times, life does feel somewhat like a hopeless and trivial pursuit.

My brain and I bid adieu. My brain would be here but it’s busy.

In any case, I am not dead yet and, if you’re reading this, neither are you.

Cheers to all of us who are not dead yet!

That’s right, vampires. You are not included in this toast.