How I Survived a Long QT Episode: Misdiagnosis, Pregnancy, and Finally Getting Answers

The Morning Everything Changed

It all started in 2015. I was 25.

My alarm clock went off one morning for my 12-hour shift. I rolled over, turned the alarm off, and rolled onto my back to stretch—like most people do. The next thing I remember is darkness. I thought my eyes were closed. I remember thinking, “I really need to get up and get ready for work.” But when I tried to open my eyes and move, I couldn’t.

I was completely paralyzed. I couldn’t move, I couldn’t speak, I couldn’t see, but I could hear.

Paralyzed but Aware

My husband woke up and noticed something was wrong. Later, I would learn he had heard my breathing pattern—what medical professionals call agonal respirations, which occur when someone isn’t getting adequate perfusion to the brain.

I heard him call my name, but I couldn’t answer. He called his mother, a nurse anesthetist. He described me as stiff as a board, with pinpoint pupils and wide-open eyes. She told him to call 911 immediately.

(He still feels guilty for not calling 911 right away, but I don’t hold it against him. Not one bit.)

Split in Two: My Brain's Response

During this time, I felt like my brain had two halves.

One half was panicking, realizing I was paralyzed. The other half was calm and rational, praying: "Okay God, I’m freaking out. I need your help. Help me stay calm. Help me get out of this."

Then—a "zing" ran through my body. My leg shot out. I got sensation back almost immediately, but my movements were sluggish. I was nauseated, had a migraine aura, slurred speech, and chest pain. It felt like someone had kicked me in the sternum.

First Clue: A "Normal" EKG

The paramedics said I was too young for a heart attack, but they ran an EKG to ease my mind. An EKG reads the heart's electrical pattern by using 12 leads placed on your body.

They told me it was normal. It wasn’t.

Three doctors later, a cardiac specialist looked at that same EKG and said my QT interval was 555. Normal is 320 to 460. (I’ll explain the QT interval more in another post.)

Misjudged at the ER

At the Emergency Department, the doctor’s first question was: “When was your last alcoholic beverage and do you do drugs?”

I was appalled. My husband was shaken, I was terrified, and she assumed I was on drugs. Her face showed doubt even after I said no. She ordered a drug test and a CT scan. Both came back clean.

I had a raging migraine. I asked for yogurt and Tylenol, but was given tramadol. After the tests, she came back a completely different person. She sat beside me, held my hand, and gently said she suspected a seizure and would refer me to a neurologist.

Testing for Seizures

We went home and I recovered from the migraine over the next three days. My primary doctor scheduled an EEG (electroencephalogram) to check for seizure activity.

They attached wires to my scalp, put me in a dark room with flashing lights. Nothing happened. The result came back negative. I was then referred to a neurologist who reviewed the EEG.

Dismissed Again: A Complex Migraine?

The neurologist asked if I had lost bowel or bladder control (I hadn’t). He concluded it was likely a complex migraine since I had a migraine afterward. Since it had only happened once, he told me to call if it ever happened again.

It Happened Again

Less than two years later, in 2017, it happened again. I had a lot of stress and was starting a new job in the ICU. The trigger? The alarm clock.

Just like before, I lost consciousness and heard my husband calling for an ambulance. Everything—timing, symptoms, EKG—was the same. Emergency department visit, same dismissal, back to the neurologist.

A Pregnancy Detour

The neurologist started me on migraine meds. Two weeks later, I had to stop them. I was pregnant.

Still, doctors weren’t sure what had happened. My primary care doctor had doubts about the migraine diagnosis. My husband’s aunt worked in cardiology and suggested a cardiac workup.

The Right Doctor, Finally

I was referred to a cardiac electrophysiologist—a rhythm specialist.

He listened to my story, looked at my EKGs, and immediately said:

“Your QT interval was over 500 both times. That means your heart’s ventricles took too long to finish their part of the beat. When your atrium sent the signal for the next beat, the two overlapped, causing total chaos—likely Torsades de Pointes. If you hadn’t spontaneously returned to rhythm, you would have died.”

He explained I needed beta blockers, but since I was only seven weeks pregnant, I had to wait due to potential risks. He ordered monthly check-ins, a DNA test to identify the LQTS type, and said I needed to talk to my OB about testing the baby.

The results came back: congenital LQTS type 2, often triggered by a startle response—like an alarm clock.

A Diagnosis, But Not Peace

It took three misdiagnoses and two years, but I finally had an answer.

That answer came with more questions, fears, and doctors. I was diagnosed with LQTS and soon after, with anxiety and PTSD. I began therapy and leaned heavily into prayer and Bible study as part of my healing.

Through that, I learned more about my condition. I became better equipped to care for my son, and I found strength in knowing what I was up against.

Living with Long QT Syndrome

Living with LQTS is a strange thing. It’s an invisible threat, a diagnosis that can strike when it wants to. But I try not to live in fear.

I still struggle with anxiety, and I have PTSD dreams about being paralyzed. LQTS complicates other health concerns, but day to day, it’s not so different from something like asthma.

You avoid triggers. You take your meds. You follow up with your doctors.

The biggest difference?

You’ve heard of asthma. Most folks haven’t heard of this killer mutation.