Dancing with Seizure Drugs (Part I)

My first days in an inpatient epilepsy monitoring unit.

I was a nervous wreck leading up to inpatient epilepsy monitoring at National Institutes for Health (NIH) in Bethesda, Maryland.

I worried about all the ways doctors might try to provoke seizures and how big the resulting seizures might become. After all, my last grand mal led to a life-threatening cardiac arrest and status epilepticus! I also worried about getting news or a diagnosis I wouldn't like.

Health fears aside, I expected to be miserable on a very basic level. Wearing electrodes on my head for 14 days straight, being confined to one small room without access to fresh air, and foregoing showers for days on end…these were daunting prospects. Then, there was the separation anxiety about leaving my service dog at home.

The night before check-in, Chris and I stayed at the family lodge on NIH campus. The friendly staff, peaceful walking paths, and free pantry gave us a warm welcome. Walking through the gardens helped put me in a better head space, and the memorials reminded me why I was voluntarily committing myself to epilepsy jail. This wasn’t just about me: my recent daily movement and speech issues and a few days of personal discomfort. It was also a profound opportunity to help researchers understand epilepsy better. I was partnering in scientific discovery. Still, the impending lack of control terrified me, and I hardly slept a wink.

The Safra Lodge at NIH

I rose early the next morning so I’d have time to do a few minutes of yoga. I moved through the familiar standing poses of Ashtanga’s primary series, performing them like the physical prayer they’ve become after years of repetition. Savoring my last few minutes of free movement, I started to relax into the inevitable. The wait was over. Today was the day. I didn’t know or plan it this way, but maybe I’d been training my whole life to come to NIH to enter this epilepsy monitoring unit (EMU). I had the skills to tackle this stop on my journey. As I moved from one warrior pose to another, it dawned on me that perhaps making this trip was the most important thing I’d ever do.

These grandiose thoughts faded fast. We arrived to a busy admissions line at the clinical building. Over an hour later, my husband and I were shown to my room. It was the size of a small hotel room, with a large window that let in natural light. Unfortunately, the intricate video EEG setup required me to face away from the window and towards cameras at all times. The cameras would be running all day and night, and a bathroom to one side was the only place they couldn’t reach. A nurse explained that to use my private en-suite bathroom, I was required to press the call button so someone could stand guard outside the cracked door. While annoying, this rule was an understandable safety precaution.

Next, a tech spent a little over an hour gluing 32 electrodes to my scalp and hooking me up to a computer. I practiced navigating my cabin, going between chair and bed, hauling cords and a mobile EEG box with me. The white cap that wrapped my electrodes amused me to no end, and I sent photos to a few friends and relatives. My little brother’s response: "I’m no doctor, but you appear to be suffering from Elfilepsy.”

True love: laughing together in the EMU

Various professionals started dropping by my room to introduce themselves—a social worker, a recreational therapist, a neurology nurse practitioner, a phlebotomist, etc. I didn’t pick up a book or my ukulele that first day, and I had no time to get bored.

At about 3 p.m., Chris stepped out into the hallway to take a work meeting and I found myself alone. I checked email, and then re-situated myself in bed. Hmm, did my leg just tremble? Maybe it’s nothing. Or is it the start of the very reason I’m here?

The all-important event button sits on the side of the bed. Patients are supposed to use it to mark typical symptoms that they associate with their seizures or auras. This allows doctors to easily locate the episode on EEG and video. It also starts an alarm bell that sends nurses running. How do I know when it’s worth pushing the event button, I asked myself?

A moment later, my left hand started trembling. That’s my tell, so I stopped wondering. I fumbled with the button with my right thumb. A nurse appeared at my door in an instant, asking if I was ok. I couldn’t answer him, so I just stared. “Ok,” he said, immediately understanding the situation. Then more people arrived. “We’re having a seizure,” he announced, and they started to follow standard protocol.

Nurses asked me questions: what was my name, could I read things off a page, etc. I knew my name and I could read the page, but I struggled and then failed to answer. Soon, my whole left side started shaking. There was a commotion, but a calm one. Lights were put in my eyes. I heard someone describe my pupils as “quite large.” Then my blood pressure was called out—127 systolic (high for me!) over a lower number I didn’t quite catch.

“Point at the ceiling,” nurses said. I tried to point, but my right hand stayed near my shoulder and shook. “You're trying—that's very good!” Thank you for noticing the effort, I thought at them.

“Green cat,” said the first nurse who’d answered my call. “Remember that.”

I heard all their other questions and demands and internal communications, but I was busy shaking, so I stopped trying to respond. Eventually the shaking died down, and they asked how I felt. I found I could speak again, so I told them my left side felt sore and weak. They asked me my name and where I was. I could answer all their questions and tell them that I remembered “green cat.” Everyone asked if what I’d experienced was normal for me. I told them that this was precisely what I experience most days (well, minus the entourage).

Shortly afterwards, Chis came back from taking his meeting. I was excited to deliver the great news. Maybe I’d provided enough data on day one that doctors would be able to classify my event, and I’d go home early! I was an EMU overachiever! An epilepsy doctor arrived and talked with us for a long time, making sure she was clear on my history and symptoms. Then she said she had to review all of the scans, records from my own doctors, and EEG data. She said she would come back to see us the next day.

I was pumped. They’d caught on camera and on EEG what happens to me at home these past few months—sometimes, up to three times daily. Health professionals had witnessed the mysterious symptoms. It was all being documented and classified!

That night, Chris and I enjoyed our bland hospital dinner. I journaled for a while. Then, once I started getting sleepy, I had my typical nighttime speech arrest. Nurses tried to get me to answer them, and all I could do was stare at my husband like a deer in the headlights and point to my ear with my right hand. He understood, and told the nurses that I could hear them. I had slight tremors on my left leg and hand. All of it was caught by the EEG and video monitors. We did some mild neurological testing for the cameras, too: reach for this, touch that. My right hand moved more or less freely. My left hand remained tense and claw-like near my side, trembling as I tried to comply with their demands.

After one more assessment, some meds, and some vitals, I crawled underneath the stiff bed sheets and coverlet. I mentally crossed one day off of my stay in epilepsy prison and wondered what the next tic mark would bring.

When I woke up, the wraps around my EEG elf-hat were starting to slip. How is this thing going to hang on until Friday when they place a fresh set of leads, I wondered? I was alarmed at how bloodshot my eyes looked in the bathroom mirror. My heart rate had dropped below 40 bpm whenever I started to enter deep sleep overnight. Each time triggered an alarm and brought concerned visitors. An EKG was conducted at 1:20 a.m. I struggled to find a few hours of rest between alarms. At least sleep deprivation should help lower my seizure threshold, I thought.

At 7 a.m., I watched the nursing shift change through a large window into the hallway. Then I practiced ukulele quietly until my third nurse came in to introduce herself. Chris and I ate breakfast.

Chris assembled the small exercise step I’d brought next to the bed. I played music on a little Jambox speaker and tried to view the coordination required to hold cords out of the way while moving my legs on and off the step for 20 minutes as a stimulating challenge. I took meds, nurses performed assessments, and we waited for the epilepsy team to reveal findings from day one.

By the end of day two, we had some updates. The EEG had not shown any significant epileptic discharges during my events. My brain MRI also looked normal. There were no obvious lesions or visible injuries to explain the recent breakthrough episodes. Doctors explained that we would need to drop my medications. The goal was to provoke slightly bigger seizures and find EEG evidence of interictal activity. Some seizures start so deep in the brain that it can be difficult for the EEG to register them. Antiepileptic drugs can also dampen interictal activity. There was still a chance that my new events were some form of focal seizure, but it was looking less likely. Doctors were starting to suspect a vascular or nerve-related cause of my new episodes. They even discussed the possibility that medication side effects might explain some of my symptoms.

On Tuesday night, doctors cut the dose of my main seizure drug in half. They dropped my other seizure drug altogether—it has a longer half-life and would gradually leave my system over a number of days. And while we all did what EMU patients and doctors do best—wait, wait, wait—the epilepsy team looped in cardiology to see if there might be other causes based on my cardiac history and some irregular beats.

Part of me wanted to have a big seizure quickly so that it could be classified…at least we’d know what we were dealing with. I wanted my problems to be given a name and a shape. To leave the EMU without a clear seizure classification would mean that a lot more digging and confusion lay ahead.

On the other hand, it dawned on me that if I didn’t have a seizure over the next few days on lower doses of meds, I’d be able to cut back for good. I’d still carry an epilepsy diagnosis—my history of grand mal seizures was too convincing for doctors to recommend backing off all antiepileptic medication. But if these new, more frequent episodes weren’t breakthrough seizures, then my epilepsy was actually pretty well controlled on medication and my seizures were only provoked by big-deal stressors like nasty COVID and/or myocarditis.

I was in a safe place to do the experimentation necessary to find out. I gave in to a few hours of thrilling hope, placing the entire cardiology component aside. Maybe a big, bad thing happened last February, and I recovered. Maybe there’s not much wrong with me today. Maybe I’m just over-medicated!

One can dream. I’d recommend it, especially when confined to an epilepsy jail cell.

Meanwhile, Chris prepared to return to our house two hours away. I wanted him to sleep in a real bed, take care of our dog, and work for a few days before visiting again over the weekend. I was terrified to be alone with whatever happened after the medication drop, but glad that he’d be only a phone call away.

After another night of constantly interrupted sleep, I woke to my third epilepsy jail tic mark. I drafted this post over breakfast and waited for things to get weird.

To be continued…

NOTES:

• The study I joined at NIH can be found here. Anyone with suspected epilepsy who wants to learn more can email the listed Referral Contact. The first visit can take a while to schedule and is basically a second (or thousandth) opinion about your current situation. They offer recommendations for further treatment or testing, some of which they offer at their facility. Follow-ups are easier and faster once you’re in the system. Every step (testing, drug trials, surgery, etc.) is 100% optional. Testing, appointments, some medication, and even travel is covered while collaborating with NIH.

• Patient care is phenomenal at NIH. Employees seem calm, experienced, and happy. If you’re interested in learning more about your epilepsy but turned off by horror stories about EMUs at for-profit hospitals, keep NIH in mind.

• I anticipate a rough few days ahead and will write more after I have some results in hand. To tide you over, I’ve been hoarding something exciting for next Friday’s post: a podcast interview with the leader of my epilepsy support group!