“You don't know what it feels like to worry about having another seizure.” “I wish you could understand how frustrating it is to not be able to drive because of epilepsy.” Thoughts like these, or some variation of them, are what people with epilepsy—or any disorder, for that matter—sometimes have in their minds when they visit their doctors.
In some cases, however, doctors know exactly what their patients are going through because they have the same condition. The doctors know how unpredictable and variable epilepsy can be from one person to another. And they understand how it can affect their patients' outlooks and experiences in life.
“I felt awful when I lost my independence and couldn't drive,” says M. Raquel Lopez, MD, associate professor of neurology at the University of Miami Miller School of Medicine in Florida. “My husband had to take me to work in the morning and pick me up at the end of the day.” She was diagnosed with left temporal lobe epilepsy 16 years ago after experiencing a focal seizure (previously called “partial seizure”) with secondarily generalized convulsions, which involves a loss of consciousness, stiffening of the muscles, and jerking movements of the limbs.
Although her seizures are well controlled now, Dr. Lopez, who is the southeast regional director of the VA Epilepsy Center of Excellence in Florida, worries about having a breakthrough seizure. That's why she makes a concerted effort to protect her well-being and sleep—and counsels her patients to do the same. “I'm very aware of the value of managing stress with different tools such as meditation, regular exercise, and effective ways of dealing with obstacles,” she says.
Still, as somebody who knows firsthand how difficult it can be to constantly maintain healthy habits, “I'm more forgiving when patients don't adhere to medication and self-care,” says Dr. Lopez. “Doctors tend to impose treatments without asking patients how they feel. My experience has changed how I approach it—now I ask, ‘How do you feel when you take the medication?' Having the condition increased my compassion, empathy, and understanding of the fear, frustration, and anger my patients feel.”
Kristin Seaborg, MD, a pediatric neurologist at the University of Wisconsin in Madison, credits her experience with epilepsy with eventually changing her career path. She was a general pediatrician for 15 years. Once she started treating children with special needs, she retrained in neurology and did a second residency in child neurology.
Having felt the embarrassment and stigma that can come with epilepsy, Dr. Seaborg empathizes with patients. “I always tell people, ‘This does not change who you are or what you do. It doesn't mean you can't achieve the goals you set out to accomplish.'”
The author of The Sacred Disease: My Life with Epilepsy, Dr. Seaborg has had seizures since she was an infant. Her first one was when she was 16 months old and had the flu. Her complex febrile seizure lasted 45 minutes. In college, she underwent a right temporal lobectomy after she'd tried three different medications to control her seizures and none was effective. “I was told that surgery was the best chance for freedom from seizures,” she says. She went five months after the operation without seizures, but in the 18 years since, she has had a seizure every few months.
During each of her three pregnancies, Dr. Seaborg upped the dosage of her medication and still had generalized seizures. These days, she continues to have occasional focal seizures while she sleeps. “They wake me up—I have a head rush and lip smacking, I can hear blood rushing in my ears, and my left hand is clenching,” she says. To control her seizures, Dr. Seaborg takes a variety of medications, tries to get adequate sleep, and doesn't drink alcohol. She's also considering other surgical options. “Epilepsy is always there even if you're not having seizures—it's something I think about every single day,” she says. “Seizure worry is there all the time.”
Like Dr. Seaborg, Sylvia V. Olvera, MD, switched her medical specialty because of her diagnosis. She too has had a temporal lobectomy. “Before the surgery, I wouldn't go a week without a seizure,” Dr. Olvera says. She was diagnosed with epilepsy during her last year of medical school in 2010, and instead of becoming an obstetrician-gynecologist as planned, she pursued neurology, with a special interest in epilepsy.
Now a general neurologist at Optum, a health care company in South Bay, CA, Dr. Olvera is familiar from her personal experience with the frustrations that epilepsy patients may face when dealing with health insurance companies. After graduating from medical school, she discovered she had to be seizure free for two years to be eligible for health insurance; her epilepsy was considered a preexisting condition. To pay for medication, she relied on patient assistance programs.
Brien Smith, MD, an epileptologist and chief of the neurology department at Spectrum Health Medical Group in Grand Rapids, MI, was diagnosed with “probable epilepsy” at age 16 but has not had a seizure since he had surgery to remove a brain tumor in 1993.
In his late twenties, Dr. Smith had gone off his antiseizure drug after a normal CT scan and repeated EEGs that failed to show signs of abnormal electrical activity. Shortly after that, while on a bus to a national epilepsy meeting, he had a major seizure during which he broke his back. The force of the seizure, not a fall, caused a significant compression of his vertebral column and multiple compression fractures in his mid-back. “Thoracic compression fracture is not uncommon when someone has a seizure, even without direct trauma; it can happen due to significant muscle contraction with the seizure,” Dr. Smith explains. An MRI revealed a tumor in his left temporal lobe. Following the tumor's removal, he took antiseizure medications for five years, then tapered off them. He's now been seizure free for almost 30 years.
“Because I've shared my story publicly, some patients want to see me because they know I can understand and relate,” says Dr. Smith. “Seizures come in different shapes and sizes, which can create a lot of anxiety in people as they wonder when the next one is going to happen,” he says. He helps patients find a balance between their personal safety and their independence and autonomy.
Doctors with epilepsy have themselves encountered assumptions others may hold about the condition, such as that it makes people fragile or physically incapable. So they understand if patients worry about facing discrimination or being prohibited from driving. (Laws regarding how long people must be seizure free before driving vary from state to state, and some states require doctors to report their patients' seizures to a state agency.)
While Dr. Smith went public with his experience, not all neurologists reveal their diagnosis to patients. Dr. Lopez doesn't routinely tell her patients, partly because she doesn't want them to view her any differently or question her ability to treat them (due to the stigma of epilepsy) and partly because she doesn't want her experience to be the focus of the visit; she does, however, share it with patients who have intractable epilepsy. “The rapport changes when I talk about my condition,” she says.
“I don't always disclose that I have epilepsy,” says Dr. Olvera, who treats adults with epilepsy, “but I do if I feel it might help patients understand what they're going through and how it will affect them long term.”
To obtain hospital privileges, Dr. Seaborg has had to ask her neurologist to sign letters stating that she has no impairments that keep her from doing her job. These neurologists who've had to make their own decisions about disclosure bring a special perspective to discussions with patients about whether to tell friends, family, and employers about their diagnoses. “You need to have a core group of people who know about it,” Dr. Smith says. “If you have a seizure at work or home and no one knows you have epilepsy, you could be subjected to a lot of interventions you don't need or that could be risky. The challenge is to know when to disclose. I wouldn't wait too long, but I wouldn't do it on day one, either.”
“The more others around you know, the safer you'll be and the better quality of care you'll get,” says Dr. Olvera. Telling people is also a way to educate them about the disorder and about what to do if somebody has a tonic-clonic seizure (which used to be called a “grand mal seizure”) or a focal seizure, or becomes confused or distant.
If a person decides to disclose a diagnosis, it's best to say something simple and straightforward, such as, “I'd like to tell you something about myself that you don't know. I have epilepsy. If I have a seizure, stay with me and put me on my side to keep me safe; put something soft under my head, if possible, but don't try to restrain me or put anything in my mouth.”
When she told her friends about her diagnosis, Dr. Olvera, a marathon runner, made a point of emphasizing that she is the same person she used to be and that she didn't want her life or her conversations with them to revolve around epilepsy. “My relationships changed in a positive way,” she says.
Hard-Won Wisdom from Neurologists with Epilepsy
Look for a doctor who will be an ally. “Find a provider who understands your condition, gets to know you as an individual, and asks how epilepsy is affecting your life,” advises M. Raquel Lopez, MD, the southeast regional director of the VA Epilepsy Center of Excellence in Florida. The relationship between patient and doctor “is almost like a marriage,” she says. “It involves a contract regarding adhering to medication, keeping appointments, and assuming an active role in managing your condition.”
Get a medical alert bracelet. “I tell my patients it buys them independence,” says Sylvia V. Olvera, MD, a general neurologist at Optum, a health care company in South Bay, CA. If you have a seizure in front of others and are wearing a medical alert bracelet, “they know what to do or whom to call,” Dr. Olvera explains.
Make self-care a priority. Stress and insufficient sleep are common triggers of seizures, so it's important to find ways to relieve stress and to get adequate sleep—and to avoid missing medication doses. Dr. Lopez also advises patients to take care of their mental health, because depression and anxiety often coexist with epilepsy. “I ask [patients], ‘How are you feeling about what's going on in your life?’ ‘Do you have a support system?’” she says. Be open with your doctor, she adds. Support groups, talk therapy, and medication can be effective for managing mood disorders.
Call it what it is. “It's okay to say ‘epilepsy,’” says Kristin Seaborg, MD, a pediatric neurologist at the University of Wisconsin in Madison and author of The Sacred Disease: My Life with Epilepsy. “Let's not dance around it. We don't say ‘cancer disorder’ the way some people insist on calling epilepsy a ‘seizure disorder.’”
Be accepting and hopeful. “Do not catastrophize—this is not the end of the world,” urges Dr. Lopez. “We have so many medications available now. Be optimistic about how the science is developing.”
Avoid being limited by it. You may have to give up a lifelong dream of becoming a pilot, but people with epilepsy can do most things in life, so don't curtail your expectations, says Dr. Seaborg. “The patients I see who struggle the most are the ones who let epilepsy define them.”
