When a Seizure Isn’t a Seizure After All

An unexpected visit to the cardiology floor marked the highlight of my first video EEG testing in Michigan in 2012. What may have appeared to be drop seizures were actually my heart pausing, and I fainted twice on the first day. Doctors discovered I had sick sinus syndrome and implanted a pacemaker.

My epileptologist told me we’d reschedule the epilepsy monitoring unit (EMU) for the following month. I was cautiously optimistic leaving the hospital, hoping my heart was responsible for all the seizures. Would the pacemaker cure me?

Epilepsy or heart condition?

My health took a sharp detour before I’d get a chance to find out. The symptoms started a few days after the hospital visit when I bent down to tie my shoes before a run. My chest tightened and I couldn’t breathe in, so I stood up quickly and loosened my shoulders in an attempt to relax.

Did the pacemaker malfunction?

My breathing soon returned to normal, so I headed out the door to run and felt fine. But the scenario would play out again. Then later that week, I started hyperventilating while editing a story at work. I literally couldn’t breathe. Two coworkers forced me out the door for a trip to urgent care, then to the emergency room. A CAT scan confirmed there were pulmonary embolisms – blood clots – in both of my lungs.

And another diagnosis: blood clots

When the doctor showed me the image, I froze, knowing the severity of blood clots. They could kill. Soon I was back in a hospital bed, holding my arm out for an IV insertion so heparin could start dissolving the clots.

What will this mean for my epilepsy testing?

My epileptologist stopped by the next day with an answer. He wouldn't put me in the EMU until I was off the blood thinner, which wasn’t for another six months. The chance of falling down during a seizure and potentially suffering a hemorrhage while on a blood thinner was too risky. Six more months?!

Seizures or fainting?

I was so disappointed. But as the weeks passed, I noticed something promising. The small seizures prior to surgery – the ones without a warning where I just blanked out and woke up without much confusion – disappeared. Had I been fainting all this time?

Hopefully, the video EEG would give insight. After a long winter and spring, the electrodes finally went back onto my scalp. Sleep deprivation was first on the agenda, and by 7 a.m. the next morning, my first small seizure occurred during breakfast.

The next one was anything but small. "This is a somewhat unusual event," my doctor wrote in my medical chart. My doctor showed me a video of the seizure 2 years later...

Watching my frontal lobe seizure

I'm eating lunch and fear fills my face as I look around the room. The seizure quickly takes over my consciousness and I start tapping my fork hard against the hospital tray. Then, out of nowhere, strange sounds and a piercing scream surface as my arms wave back and forth. After a minute, I calm down and look around the hospital room, confused.

I watched the video in humiliation at the sight of my body, suddenly overtaken by a storm of misfiring neurons. The EEG showed sharp waves across my right frontal lobe and my doctor made me feel better by explaining why my body went haywire. The frontal lobe controls motor function.

My doctor called my screaming seizures unique and bizarre because I wasn't aware I had the events, and I returned to baseline very quickly. Unique and bizarre weren’t exactly comforting words to hear from a doctor, but after seeing the video, I couldn’t argue. It was both incredible and devastating to see how a seizure could completely change my personality, then calm down and turn me right back to normal.

Still so many questions about diagnosis

Six days of seizures went as well as having seizures for 6 days could go. But it wasn't enough data to make a clear diagnosis. My doctor determined another round in the EMU would be best to see if I might be a good candidate for surgery workup. The idea seemed so far-fetched at the time. For now, my medications were adjusted and I was on my way.