Detached: Why This Epileptic Will Never Again Do Another Ambulatory EEG

Right. So I’ve had epilepsy since I was 12.

That last sentence makes it sound like going from “no epilepsy” to “epilepsy” was a smooth transition… it was not.

In any case, as an epileptic (who hid her epilepsy for twenty-five years out of fear of people’s rampant inability to cope with fear and who has only recently “come out”), I’ve had to get an EEG test every year since.

You know, to make sure I was still epileptic.

What do EEGs do? Record brain waves.

What do my EEGs show, every time? That I have abnormal brain waves.

I’m epileptic. That’s how it works. We have abnormal brain activity.

Which is kind of a

NO BRAINER. 😺

All brains produce electricity but epileptic brains have extra electricity. That extra electricity is not “normal”.

Having epilepsy can be kind of cool if you only think about your brain’s rampant electricity and read a lot of comic books because then you can start to hope you will someday, somehow, find a way to wield this electricity.

And then get a cape and some spandex and work this to your advantage.

Sadly, while I can’t speak for my epileptic comrades, this scenario has never played out for me.

At least, not yet.

PMA ALL DAY LONG.

In the meantime, I go in for an annual EEG and, if I happen to be changing neurologists, like I did this year and last year, I’ll do multiple EEGs in a year because every neurologist has to have their own EEG.

Neurologists seem to have very little trust in the competency of other neurologists.

And, until this year, these EEGs have always been done in a hospital. I just roll in, techs adhere electrodes to my scalp and then I lay in a chair, closing my eyes, opening my eyes, sleeping, and the tech blinks lights on and off and records my brain’s activity.

It takes about an hour and it doesn’t hurt and then it’s done. The tech removes the electrodes and as much of the glue as they can and I’m free to roam.

Sometimes neurologists will have me not sleep the night before an EEG so I’m sleep-deprived for the test (human brain activity is different and usually more active when we sleep and its extra-extra if you’re an overtired epileptic).

The first time I had to do a sleep-deprived EEG I was thirteen and my mom was going to stay up all night with me but she didn’t even make it to Conan O’Brien’s Late Show.

I remember smiling as I looked down at her as she, earlier, had been bordering on militant with her determination to stay awake all night and who was, mere hours later, collapsed and spread across the kitchen counter, sound asleep.

In any case, as an epileptic, I get EEGs like responsible, financially secure Americans get annual physicals.

In fact, ever since I’ve been an official adult who makes independent medical decisions, I’ve always had a neurologist but have not always had a general practitioner (GP).

Yet, it wasn’t until April of this year that I had my first ambulatory EEG,

and last week I completed my second ambulatory EEG.

I had to do a second one because my last neurologist who ordered the first one refused to share his data with my new neurologist.

Sigh.

Tellingly, the day before I began the second test, a small piece fell off my laptop:

I felt this to be a bad sign and I was kind of right.

To explain, an ambulatory EEG lasts for days and the patient is allowed to… amble… during it.

This kind of EEG is also usually done in a person’s home. A tech glues and tapes the electrodes onto the patient’s scalp as in a “regular” EEG but then they also apply gauze and wrap their head with cloth wrappings.

So a very nice tech came to my home last Tuesday and hooked me up. On social media, a close friend’s mom said I looked like a 1920s flapper and I appreciated that.

However, an ambulatory EEG hurts. Since the techs don’t want the electrodes to move as they amble, they really press the electrodes into their patient’s scalp. They also apply a ton of adhesive so each electrode stays put and then wrap the patient’s poor little head up really tightly.

Not because they’re cruel… they do this so the electrodes stay in place.

Yet, regardless of their motivation, this hurts. The pain is supposed to relent after a couple of hours but, for me in the last test, the pain sustained.

Also, I didn’t know if I was producing an insane amount of electricity or what, but for three days and nights it felt like I had hot pokers pressing into my head.

Unhappy.

I felt like I was in one of the Hellraiser movies and I even had a box attached to me.

Though Pinhead always looked a bit more smug with his hellish puzzle box.

And fine. The 72 hour EEG hurts. For others, the pain is supposed to relent once their body adjusts.

However, my body, known in some circles as the Difficult One, didn’t adjust.

That’s why Naproxen was created. Whatever. Life is pain, moving on…

However, the annoyance of this kind of test does not end with the pain. No, my most recent ambulatory EEG came with the box which was attached to the metal electrodes glued to my head, and also a laptop and video camera which were connected to each other.

So an additional caveat of this test is how I couldn’t physically move without physically moving the camera, laptop and box along with me.

Consequently, I didn’t move much and, when I did, we moved like one single wonky unit.

And this was logistically, functionally difficult, especially since all the equipment had to be plugged into an electrical power strip AT ALL TIMES.

The first night of the test my husband David was working so I was on my own. And I quickly realized I would need to untangle some cords and develop a better system by the second night as the tech’s suggestion to “just drag (the tangled mess of cords) as a pile” did not work as well as I had hoped.

But, psychologically, the most uncomfortable component of this ambulatory EEG was how I knew *they* were always watching me through that camera.

It doesn’t help that that camera turned red with night vision like some kind of Evil Eye.

At night, I’d move the camera++ into our bedroom and that Evil Eye would be staring at me all night from a short distance away.

That didn’t help facilitate quality sleep.

Also, the laptop constantly shifted screens as it was remotely controlled by techs elsewhere and this cast a disruptive light show on the walls of our tiny bedroom.

This was also not ideal.

But that’s the point. They want to upset you so they evoke the most brain activity data.

So I just drudged through. The next night I had a better system for the transfer from living room to bedroom and we put the laptop on the floor so its light wasn’t so disruptive to us.

I knew the techs were watching me because they told me and they also called me often.

It was interesting talking to the techs watching me in my home because one of them on the second day had no idea what time of day it was and always signed off “Have a good day”, even when it was 11:15 at night.

Me: “You too…”

Finally, the last day arrived and David didn’t have to work out of the house so we tried to make the best of it.

He made me coffee, brought me meals and also texted me images of what I reminded him of.

Yet, despite our good intentions, the last day was also the worst day. Little things just kept going wrong and I was starting to wear out.

At one point on the final day, the techs called to walk me through how to change the batteries in the EEG box.

I had been dreading this.

Yet, the nice tech rambled on and explained how she noticed the EEG box’s batteries were low so she’d rather have me change the batteries right then rather than having to later call me in the middle of the night to change them at that time.

I said, “Thank you.”

However, I was also horrified and thought: “If you called me in the middle of the night, waking me, to perform minute tasks using my hands as a sleep-deprived, stressed out epileptic, I may have been inspired to figure out how to file my first wrongful injury lawsuit or, as a ghost, my first malpractice and wrongful death lawsuit.”

This is because the process of “changing the batteries” was somewhat… more involved than I’d expect. With the April ambulatory EEG, I just changed the batteries in the way I changed batteries in my walkman or the TV remote.

But with the most recent test, changing the batteries in the EEG box involved pulling back the sock which was pulled over the box and the wires which were connected to the electrodes on my head, finding a zip lock bag of batteries and tools, using a tiny screwdriver to unscrew unseen, tiny screws, removing mini hard drives, labeling the hard drives and then putting it all back together.

While it was my kind of busy work, I realized that, on the evening of the final day, I couldn’t do it.

Just looking at the long skinny screwdriver made my brain tweak out.

As a highly-strung epileptic who was feeling unusually worn with the tech calls and the pain and the situation, my left eye had started to really twitch by this point in the game.

I was also experiencing a subtle epileptic aura and the twitchiness was spreading throughout my body.

To ask me to perform minute tasks involving motor function in that state was like throwing a ball at a blind person.

Really uncool, tech people.

It’s taken me years and years but I’ve finally learned to recognize and respect epileptic limitations when they rise up so I told the tech I couldn’t change the batteries right then.

Thankfully, I have a live-in husband to whom I could delegate the task so I handed him my phone and then he followed the verbal directions of the tech on the phone on how to change the batteries.

Thus, while David kindly worked on the EEG box from a very short distance as my head was physically attached to it, I got the survey out of the paperwork which came with the clipboard and, in response to the question about whether this test should be performed at home or in the hospital, I circled the motherflipping latter option.

Because, while thankful to my husband for his help, I now felt demoralized as I felt that much more unable.

It was like a stranger called me to say: “Hey! Can you do this? You really should be able to do this.”

And I had to say: “No, I honestly cannot.”

Demoralizing.

After the battery change drama, another tech called later that night to say, “Can you move the EEG box out from under your blanket? I’ve lost its signal.”

We all know our phones and other devices are watching and recording us but they don’t usually call us to make adjustments or to tell you to TAKE OFF THAT LIGHT, HOLEY BLANKET YOUR MOM CROCHETED WHICH IS GIVING YOU COMFORT RIGHT NOW.

I’m starting to dislike technology.

Another part of this whole drama is how I had to log every activity on sheets of paper. I usually spend my time blogging and working on my memoir so talking about myself wasn’t a huge thing.

🎶Me me me me me me me me.🎶

Yet, I still felt a little “NONE OF YOUR BUSINESS” pretty much constantly throughout the most recent ambulatory EEG but did my best to smother that feeling and dutifully logged my activities and followed the directions of techs.

And felt so upset about it.

Clearly, there is so much about ambulatory EEGs that presses my buttons.

Therefore, on the fourth and final day of the test, I woke at 5AM, my left eye twitching like mad, and watched the walls until it was 6AM which is when I call the techs to ask if I could end the study.

They’d told me Friday was the last day, but they didn’t specify a time so I called as soon as I could.

Well, I waited until it was 6AM because it felt a more reasonable hour to call.

I opened with: “Good morning. I’m (me). I’m calling to ask when I may end the test.”

“Let me see…”

“How about right now.”

After confirming a couple more details, the tech agreed and she walked me through the steps to end the test.

Hallelujah.

After hanging up the phone, I immediately took off the head wrapping and gauze, revealing the electrodes which were now embedded into my scalp.

I then unplugged what I was supposed to and set off to the bathroom to remove the electrodes from my head.

The tech who put the electrodes on my scalp told me they weren’t using glue anymore and were instead using a water soluble adhesive.

I didn’t notice a difference. I just tried to salvage my hair and get the shit off my head.

And the cloth tape pieces which had covered the metal electrodes were blackened which made me feel my brain electricity had caused the paper to burn and my scalp was being burned for three consecutive days and nights.

It took me about fifteen minutes to detach all the electrodes.

And then I was liberated.

Run free, brain electricity!

Liberated, now I am hoping my skin heals so my forehead doesn’t forever look like baby horns are trying to push through.

And I’m happy to pick off the scabs left by the other electrodes. I’ll heal.

I am simply happy to be able to move around independently. And now I wait for the results.

The results may show: I am still epileptic!

Or maybe the results will show I’m dangerously electric, a threat to natural order, and they’ll have to contain me in some special room.

As long as that room was temperature-controlled, and I had a window view of trees, and access to my blankets, many books and a variety of drinks, I’d consider that an upgrade.

After all, I’m already on the newest and most advanced anti-seizure medication after my last neurologist interpreted the data from the first ambulatory EEG back in April.

After (allegedly) analyzing the April EEG results, my former neurologist had said I had so much electrical activity being produced by my brain, my body wouldn’t be able to sustain it for much longer.

All I heard were three points:

1. I’m the most epileptic. 👑

2. There is still a chance I could become a stage four telepathic mutant.

3. I needed a second opinion because, at minimum, that person was not a good communicator.

All I know for sure is that two ambulatory EEGs in four months is two tests too many, and that’s okay because

I am never doing another one of those tests ever again.

It’s somewhat nice to feel the solid walls of your own boundaries.

And, in the meantime, while I wait for all the test results and my Big Meeting with my new neurologist who will compile, analyze and interpret all the results and give me some kind of verdict…

I’ll do some online pre-shopping in preparation.

And think good thoughts.

Because, no matter what, life is short so every day we’ve been given is worth it.

We just have to remember to live.

And not spend our time worrying ourselves to death or partaking in ambulatory EEGs.

🖤