I Was Diagnosed with Epilepsy Without Even Knowing I Was Having Seizures
After months of mysterious blackout spells, I finally got a diagnosis—but that meant figuring out how to cope with a lifelong disease.
On October 29, 2019, I was diagnosed with epilepsy. I sat across from my neurologist at Brigham and Women's Hospital in Boston, my eyes welling and heart aching, as he told me I had an incurable illness that I'd have to live with for the rest of my life.
I left his office with a prescription script, a couple of brochures for support groups, and a million questions: "How much is my life going to change?" "What are people going to think?" "Am I ever going to feel normal again?"—the list goes on.
I know most people who get diagnosed with a chronic illness aren't prepared for it, but perhaps what made it more shocking to me was that I wasn't even aware that I was having seizures until two months prior.
Struggling with My Health
Most 26-year-olds feel pretty invincible. I know I did. In my mind, I was the epitome of healthy: I worked out four to six times a week, I ate a fairly balanced diet, I practiced self-care and kept my mental health in check by routinely going to therapy.
Then, in March 2019, everything changed.
For two months, I was sick—first with an ear infection then with two (yes, two) rounds of the flu. Being that this wasn’t my first influenza face-down (#tbt to the swine flu in '09), I knew—or at least I thought I knew—what to expect upon recovery. Yet, even after the fevers and chills were finally gone, my health didn’t seem to rebound. Instead of regaining my energy and strength as anticipated, I was constantly exhausted and developed a strange tingling sensation in my legs. Blood tests revealed that I had a severe B-12 deficiency—one that had gone undiagnosed for so long that it seriously affected my energy levels and went as far as damaging the nerves in my legs. While B-12 deficiencies are fairly common, countless viles of blood couldn’t help docs determine why I was deficient in the first place. (Related: Why B Vitamins Are the Secret to More Energy)
Thankfully, the solution was simple: weekly B-12 shots to raise my levels. After a few doses, the treatment seemed to be working and, a couple of months later, it proved to be successful. By the end of May, I was thinking clearly again, feeling more energized, and experiencing far less tingling in my legs. While the nerve damage was irreparable, things were starting to look up and, for a few weeks, life went back to normal—that is, until one day while typing up a story, the world went dark.
It happened so fast. One moment I was watching words fill the computer screen in front of me as I’ve done so many times before, and the next, I felt an overwhelming surge of emotion rise from the pit of my stomach. It was as if someone had given me the world's most terrible news—and so I subconsciously stopped pounding the keyboard. My eyes welled up, and I was almost sure I was going to start bawling hysterically. But then, I started getting tunnel vision and eventually couldn't see all, even though my eyes were open.
When I finally came to—whether it was seconds or minutes later, I still don’t know—I was sitting at my desk and immediately started to cry. Why? Not. a. clue. I had no idea WTF just happened, but I told myself that it was probably just a result of everything my body had been through over the past few months. So, I took a moment to gather myself, chalked it up to dehydration, and continued typing away. (Related: Why Am I Crying for No Reason? 5 Things That Can Trigger Crying Spells)
But then it happened again the next day—and the day after that and the day after that and, soon, these “episodes” as I called them, intensified. When I blacked out, I’d hear music that wasn’t actually playing IRL and hallucinate shadowy figures talking to one another, but I couldn’t make out what they were saying. It sounds like a nightmare, I know. But it didn’t feel like one. If anything, I actually felt euphoric whenever I went into this dream-like state. Seriously—I felt so happy that, even in a delusion, I thought I was smiling. The instant I snapped out of it, however, I felt deep sadness and fear, which was usually followed by extreme bouts of nausea.
Every time it happened, I was alone. The entire experience was so weird and bizarre that I hesitated to tell anyone about it. Frankly, I felt like I was going crazy.
Realizing There Was a Problem
Come July, I started forgetting things. If my husband and I had a conversation in the morning, I couldn't remember our discussion by night. Friends and family members pointed out that I kept repeating myself, bringing up topics and instances that we'd already spoken about at length just minutes or hours before. The only possible explanation for all of my newfound memory struggles? The recurring “episodes”—which, despite happening on the regular, were still a mystery to me. I couldn’t figure out what brought them on or even establish some type of pattern. At this point, they were happening at all hours of the day, every day, regardless of where I was or what I was doing.
So, about a month after my first blackout, I finally told my husband. But it wasn’t until he actually saw one for himself that he—and I—truly grasped the seriousness of the situation. Here's my husband's description of the incident, as I still have no memory of the event: It happened while I was standing by our bathroom sink. After calling out to me a few times sans-response, my husband headed to the bathroom to check in, only to find me, shoulders slumped, staring blankly at the ground, smacking my lips together as I drooled. He came up behind me and grabbed my shoulders trying to shake me. But I just fell back into his arms, completely unresponsive, my eyes now blinking uncontrollably as well.
Minutes passed before I woke up. But to me, the time passed felt like a blur.
Learning That I Was Having Seizures
In August (about two weeks later), I went to see my primary care physician. After telling her about my symptoms, she immediately referred me to a neurologist, as she hypothesized that these “episodes” were likely seizures.
"Seizures? No way," I instantly responded. Seizures happen when you fall to the ground and convulse while foaming at the mouth. I had never experienced such a thing in my life! These dream-like blackouts had to be something else. (Spoiler alert: they weren’t, but I wouldn’t get a confirmed diagnosis for another two months after I finally secured an appointment with the neurologist.)
In the meantime, my GP corrected my understanding, explaining that what I had just described is a tonic-clonic or grand-mal seizure. While the falling-then-convulsing scenario is what comes to mind for most people when they think of seizures, it’s actually only one type of seizure.
By definition, a seizure is an uncontrolled electrical disturbance in the brain, she explained. Types of seizures (of which there are many) are split into two major categories: Generalized seizures, which begin in both sides of the brain, and focal seizures, which begin in a specific area of the brain. There are then several subtypes of seizures—each of which is different than the other—within each category. Remember those tonic-clonic seizures I just talked about? Well, those fall under the “generalized seizures” umbrella and tend to cause a partial or complete loss of consciousness, according to the Epilepsy Foundation. During other seizures, however, you can remain awake and aware. Some cause painful, repetitive, jerking movements, while others involve unusual sensations that can affect your senses, whether that's hearing, sight, taste, touch, or smell. And it’s not necessarily a game of this or that—sure, some people experience only one subtype of seizure, but other folks can have a variety of different seizures that manifest in different ways, according to the Centers for Disease Control and Prevention (CDC).
Based on what I shared about my symptoms, my GP said I was likely having some type of focal seizure, but that we'd have to do some tests and consult the neurologist to be sure. She scheduled me for an electroencephalogram (EEG), which tracts electrical activity in the brain, and a magnetic resonance imaging (MRI), which shows any structural changes in the brain that may be related to these seizures.
The 30-minute EEG came back normal, which was to be expected since I didn't have a seizure during the exam. The MRI, on the other hand, showed that my hippocampus, a part of the temporal lobe that regulates learning and memory, was damaged. This malformation, otherwise known as hippocampal sclerosis, can lead to focal seizures, even though this isn't the case for everyone.
Getting Diagnosed with Epilepsy
For the next two months, I sat on the information that there was something inherently wrong with my brain. At this point, all I knew was that my EEG was normal, my MRI showed an irregularity, and I wouldn’t understand what any of this meant until I saw a specialist. In the meantime, my seizures got worse. I went from having one a day to having several, sometimes back-to-back and each lasting anywhere between 30 seconds to 2 minutes.
My mind felt foggy, my memory continued to fail me, and by the time August rolled around, my speech took a hit. Forming basic sentences required all of my energy and even still, they wouldn’t come out as intended. I became introverted—nervous to speak so I didn't come off as dumb.
Besides being emotionally and mentally draining, my seizures affected me physically. They’ve caused me to fall, hit my head, bump into things, and burn myself after losing consciousness at the wrong moment. I stopped driving out of the fear that I might hurt someone or myself and today, a year later, I still haven’t returned to the driver’s seat.
Finally, in October, I had an appointment with the neurologist. He walked me through my MRI, showing me how the hippocampus on the right side of my brain was shriveled and much smaller than the one on the left. He said that this type of malformation can cause seizures—Focal Onset Impaired Awareness Seizures, to be exact. The overall diagnosis? Temporal Lobe Epilepsy (TLE), which can either originate in the outer or the inner region of the temporal lobe, according to the Epilepsy Foundation. Since the hippocampus is located in the middle (inner) of the temporal lobe, I was experiencing focal seizures that affected the formation of memories, spacial awareness, and emotional responses.
I was likely born with the malformation on my hippocampus, but the seizures were triggered by the high fevers and health issues I had earlier on in the year, according to my doc. The fevers triggered the seizures as they inflamed that part of my brain, but the onset of seizures could have otherwise happened at any time, without cause or warning. The best course of action, he said, was to go on medication to control the seizures. There were several to choose from, but each came with a long list of side effects, including birth defects if I were to get pregnant. Since my husband and I had plans to start a family, I decided to go with Lamotrigine, which is said to be the safest. (Related: FDA Approves CBD-Based Drug to Treat Seizures)
Next, my doctor informed me that some people with epilepsy can die for no reason—aka sudden unexpected death in epilepsy (SUDEP). It happens to around 1 in every 1,000 adults with epilepsy and poses a greater risk for patients with chronic childhood-onset epilepsy that continues into adulthood. Although I don’t technically fall into this higher risk grouping, SUDEP is the leading cause of death in people with uncontrollable seizures, according to the Epilepsy Foundation. Meaning: it was (and still is) that much more essential I establish safe and effective methods of controlling my seizures—consulting an expert, taking medication, avoiding triggers, and more.
That day, my neurologist also revoked my license, saying I couldn't drive until I was seizure-free for at least six months. He also told me to avoid doing anything that could trigger my seizures, which entails drinking little to no alcohol, keeping stress to a minimum, getting plenty of sleep, and not skipping medication. Other than that, the best thing I could do was to live a healthy lifestyle and hope for the best. As for exercising? There didn’t appear to be any reason I should avoid it, especially since it could help with the emotional burden of dealing with my diagnosis, he explained. (Related: I'm a Fitness Influencer with an Invisible Illness That Causes Me to Gain Weight)
How I Coped with the Diagnosis
It took three months to become acclimated to my seizure meds. They made me extremely lethargic, nauseated, and foggy, as well as gave me mood swings—all of which are common side effects but challenging nonetheless. Still, within just weeks of starting the meds, they began to work. I stopped having as many seizures, maybe a few a week, and when I did, they weren't as intense. Even today, I have days when I start nodding off at my desk, struggling to motivate and feeling like I'm not in my own body—aka an aura (which, yes, you can also experience if you suffer from ocular migraines). Although these auras haven’t progressed to a seizure since February (🤞🏽), they’re essentially a “warning sign” for a seizure and, thus, make me anxious that one is coming—and that can be quite exhausting if and when I have 10-15 auras a day.
Perhaps the most difficult part about being diagnosed and adapting to my new normal, so-to-speak, was telling people about it. My doctor explained that talking about my diagnosis could be liberating, not to mention essential for those around me in case I had a seizure and needed help. I quickly realized that no one knew anything about epilepsy—and trying to explain was frustrating, to say the least.
"But you don't look sick," some friends told me. Others asked if I'd tried "thinking away" the seizures. Better yet, I was told to find comfort in the fact that "at least I didn't have the bad kind of epilepsy," as if there's any good kind.
I found that every time my epilepsy was desensitized by ignorant comments and suggestions, I felt weak—and I struggled to separate myself from my diagnosis.
It took working with a therapist and an insane amount of love and support for me to realize that my illness did not and does not have to define me. But this didn’t happen overnight. So, whenever I lacked emotional strength, I tried making up for it physically.
With all of my health struggles over the past year, going to the gym had taken a backseat. Come January 2020, as the fog caused by my seizures started to clear, I decided to start running again. It's something that had offered me a lot of comfort when I was diagnosed with depression as a teenager, and I hoped it would do the same now. And guess what? It did—after all, running is bursting with mind and body benefits. If there was a day when I struggled with my words and felt embarrassed, I laced up my sneakers and ran it out. When I had night terrors because of my meds, I'd log some miles the next day. Running just made me feel better: less of an epileptic and more myself, someone who’s in control, capable, and strong.
As February rolled around, I also made strength training a goal and began working with a trainer at GRIT Training. I started with a 6-week program that offered three circuit-style workouts a week. The goal was progressive overload, which means increasing the difficulty of the workouts by increasing volume, intensity, and resistance. (Related: 11 Major Health and Fitness Benefits of Lifting Weights)
Each week I got stronger and could lift heavier. When I started, I had never used a barbell in my life. I could only do eight squats at 95 pounds and five bench presses at 55 pounds. After six weeks of training, I doubled my squat reps and was able to do 13 bench presses at the same weight. I felt powerful and with that gave me the strength to deal with the ups and downs of my day-to-day.
What I've Learned
Today, I'm almost four months seizure-free, making me one of the lucky ones. There are 3.4 million people living with epilepsy in the U.S., according to the CDC, and for many of them, it can take years to get seizures under control. Sometimes, medications don't work, in which case brain surgery and other invasive procedures might be required. For others, a combination of different medications and doses are needed, which can take a long time to figure out.
That's the thing with epilepsy—it affects every. single. person. differently—and its repercussions go far beyond the seizures themselves. Compared to adults without the disease, people with epilepsy have high rates of attention deficient disorder (ADHD) and depression. Then, there's the stigma associated with it.
I'm still learning not to judge myself through someone else's eyes. Living with an invisible illness makes it so hard not to. It took a lot of work for me not to let people's ignorance define how I feel about myself. But now I'm proud of myself and my ability to do things, from going for a run to traveling the globe (pre-coronavirus pandemic, of course) because I know the strength it takes to do them.
To all my epilepsy warriors out there, I am proud to be a part of such a strong and supportive community. I know that speaking up about your diagnosis is so hard, but in my experience, it can also be liberating. Not only that, but it brings us one step closer to destigmatizing epilepsy and bringing awareness to the illness. So, speak your truth if you can, and if not, know that you're definitely not alone in your struggles.