Emily Rowland’s boyfriend calls her “Sleeping Beauty.”
It’s a term of affection, sure, but it’s also a soft way of explaining her condition; Rowland often sleeps upward of 20 hours per day. She sometimes falls asleep while getting dressed for school, and she’s prone to frequent staring spells.
Her mother, Brandi, helps with everyday tasks, but Emily is coming to terms with the idea that she’ll never have the life of an average teenager. For Brandi, it’s a heartbreaking experience.
“There is nothing harder than watching your child suffer physically and emotionally and not be able to do anything about it,” she wrote on a GoFundMe page she organized to cover some of her daughter’s medical expenses.
“Please continue to pray for all of us as this has been a long, heart-wrenching journey and we still have a long road ahead of us,” she continued. “There is no cure. We can only hope to find a better way to manage these conditions.”
Emily has several rare brain disorders, including an extreme form of epilepsy (her exact diagnoses include “Focal seizures with loss of consciousness with rapid generalization, epileptic encephalopathy and Electrical Status Epilepticcus in Sleep,” per the crowdfunding page). Her epilepsy is in all four lobes of her brain.
Brandi wrote, “[Emily’s] brain misfires more than 80 percent of her life even during sleep and devoid of triggers and stimulants.”
To a layperson, Emily’s symptoms might not seem like epilepsy.
Her case is extreme, but the symptoms don’t seem like the classic convulsions that most people associate with epilepsy disorders. After all, Emily is typically completely still during her seizures; to a stranger, she’d seem like a perfectly healthy girl.
In fact, her own family didn’t think anything of her early symptoms until her constant sleepiness started causing problems at school.
“[At the beginning of her illness], she started to get really sleepy,” Brandi said. “Emily had always suffered on road trips but we thought it was normal car sickness. It was only with hindsight that we now recognize that these things were all connected.”
Before researching this piece, we’d always thought of epileptic seizures as big, dramatic events with convulsions, fainting, and other impossible-to-miss symptoms. That’s not the case—epilepsy isn’t a single disorder, but rather a range of disorders, and symptoms can vary considerably from person to person.
Epilepsy sucks so much , not being able to control your body , your voice , anything you try doesn’t work at all and all I ask is, why?
— Jared (@JaredMJoyner) June 26, 2018
“It’s a varied presentation across the population,” neurologist Jose Vega, MD, PhD, tells HealthyWay. “People think that a seizure is always a convulsion. They don’t realize the broad range of symptoms you can experience when you have a seizure.”
To understand epilepsy, it’s helpful to understand seizures.
According to the Epilepsy Foundation, a seizure can be defined as a “sudden surge of electrical activity in the brain.” That burst of electricity can affect how a person acts for a short time—in Emily’s case, it initially caused periods of inattentiveness and sleepiness, along with headaches and other minor symptoms.
“A common [seizure symptom] is just a moment of inattention,” Vega says. “People may think that they are simply being inattentive or that they’re absent-minded about something. People around them might look at them, and they look completely normal [during the seizure].”
“But the patient might do that throughout the day on a regular basis and they think that they’re just being inattentive—and when you do an EEG on these people, you might find that those moments of inattention are actually moments of seizures, something called absence seizures.”
Dozens of other symptoms are possible depending on the part of the brain affected by epilepsy.
Part of the reason Emily’s case is so unusual is that all four lobes are affected; normally, the effect is confined to a much smaller part of the brain, and symptoms are less severe. In fact, from the patient’s perspective, epileptic seizure symptoms might seem like physical issues.
“A strange taste in the mouth or moments of fear [or] anxiety—these might be seizures, arising from the temporal lobe,” Vega says. “Motor movements can also be seizures. Sometimes, something as simple as a muscle spasm—almost like charley horse—can actually be a symptom of a seizure.”
[pullquote align=”center”]”People might not think about them, thinking that they’re just absent-minded, and then someone finally convinces them to see a doctor. Well, it’s been 10 years, and maybe they’ve missed out [on] opportunities at life because of the condition.”
—Jose Vega, MD, PhD on common symptoms of seizures [/pullquote]
Even something like a feeling of déjà vu can be a symptom of an epileptic disorder. Any unusual neurological symptoms that occur more than once deserve attention from a physician, particularly if they seem disorienting.
“[With epilepsy] in the parietal lobe, for example, you can have these experiences where you feel either a sensory experience or something related to your position in space,” Vega says. “So you may have that sort of feeling that you’re outside of your body or somewhere else.”
“If you have something in the occipital cortex, where the vision is processed in the brain, those seizures tend to give you visual issues—hallucinations—which can be very vivid. You might simply see things changing color, or the visual experience may be altered so that people look very small or very large. These can be seizures too.”
Vega says the most common signs that people miss include the aforementioned periods of inattentiveness, along with strange metallic tastes and muscle jerks.
https://twitter.com/ChloeCartwrigh/status/882761900500668416
“Some of these subtle symptoms tend to be ignored,” he says. “People might not think about them, thinking that they’re just absent-minded, and then someone finally convinces them to see a doctor. Well, it’s been 10 years, and maybe they’ve missed out [on] opportunities at life because of the condition. So it’s very important to get these things analyzed, and if necessary, treated.”
Because some symptoms are extremely minor, even neurologists have trouble identifying them.
“Even with a single patient, you can have a whole variety of different kinds of seizures,” Vega says. “And even if someone knows about epilepsy, they may misinterpret some of their own symptoms as being something normal when they’re actually experiencing a seizure.”
So…I went to the doctor.
He says the staring and walking spells are either dissociation or partial-complex seizures, but that I should talk to my neuro doctor.
He also recommended me discuss getting on a new medicine.
G r e a t.
— Zelda Aurora Jeanne Gabriel (@ZeldaAGabriel) June 20, 2018
Vega tells us about one particularly notable case of a missed diagnosis.
“I was in Honduras, and I was speaking to this physician who was on vacation,” he recalls. “I noticed that whenever as I was speaking to him, he would come back and ask me the same question, maybe once or twice after I had already visited that subject. That made me think that he could have seizures, and I told him about it.”
If you’re paying attention, you already know where this story is going.
“He had it investigated later on. Long story short, he has partial seizures. And he told me how difficult it was for him to get through school—and, you know, this is a physician in medical school. Even his own peers and professors didn’t catch it. Even physicians might miss it.”
If you experience any unusual symptoms, here’s what to do.
In case it’s not clear, we’ll put this out there: You absolutely cannot self-diagnose epilepsy, even if you’ve got a slew of degrees under your belt. In fact, your primary care physician may be unable to diagnose seizures unless the symptoms are relatively obvious.
We also don’t want to make anyone panic; many of the symptoms mentioned in this article can also apply to dozens of other conditions that are completely unrelated to epilepsy. A charley horse, for example, might just mean that you need to eat a few bananas for potassium. With that said, if you have spells of inattentiveness, strange muscle contractions, or any of the other symptoms of a seizure, keep track of them.
“Whenever you have these spells, I would make note of them,” Vega says. “I would actually log them somewhere and come up with a timeline for when they’re happening. [Write down] what time, how the spells are happening, how they’re affecting you, things like that.”
“But you should be attuned to abnormal symptoms in yourself. If you don’t track them by logging them somewhere, you may just completely ignore them and not realize how often they’re happening.”
Most importantly, if you have symptoms, see a physician as soon as possible—preferably a neurologist who specializes in epilepsy.
“Neurologists are much more tuned in to the subtleties of diagnosing epilepsy,” Vega says. “If you cannot get to a neurologist directly because you need to be referred, then obviously go to your primary doctor. But if you have access to a neurologist right away—I think that would be a very reasonable thing to do.”
Vega says that, in most cases, epileptic disorders are quite treatable. Most respond well to medication, and when surgery is required, it’s often successful.
Unfortunately, that’s not true in Emily’s case. For the past seven years, she’s tried both traditional and non-traditional treatments, but her condition has continued to worsen. Currently, her family is hoping to purchase a VNS device, a surgical implant that may help manage her seizures.
“It’s hard to put into words how scary it is,” Brandi told The Daily Mail. “She can sleep for days, and will need to be put onto a [medical] drip as she is not getting the food and water she needs. When she is awake, she puts her best foot forward, despite how sick she is and always puts others before herself.”
“The hardest part is watching the life I had planned slip away,” Emily told the tabloid. “But I will never give up.”
[Editorial note: To donate to Emily’s medical expenses, visit her GoFundMe page here.]