Friday, January 22, 2010

Sex doesn't cause seizures!

During the summer before her senior year at Northwestern, Christine Haselhorst spent three weeks studying eight hours a day for the Medical College Admissions Test. After finishing the exhausting exam, Christine returned home, finally able to relax and release her stressful preoccupation with science jargon and practice tests. Her celebratory dinner with friends, however, was cut short. That evening, Christine, a Weinberg senior, had five seizures in a row, the most she has ever had in a single day. While one episode per week had become normal for her, this extensive sequence of seizures shocked Christine, sent her to the hospital and reminded her—yet again— of the tight grip epilepsy had on her life.

Christine had her first seizure at 12 years old. Electric impulses shot through the left temporal lobe of her brain causing her to lose consciousness. For nearly one minute, her facial muscles twitched and her entire body stiffened and jerked. After eight years with no seizures, Christine began experiencing them again the summer before her junior year. Now, two years and more than 20 seizures later, Christine is still hoping for an effective treatment option. Despite medication, her episodes now occur weekly and, paired with her prescription side effects, they have started to drain Christine emotionally. As her team of neurologists searches for the perfect drug combination, Christine avoids behaviors the medical community has identified as potential triggers, such as sleep deprivation, stress and alcohol use. “Medication is the only solution they have, so I’m trying to do everything else I can,” she says. “Sometimes, though, you don’t want to be that person in the corner. But I guess I’m just not a normal college student.”

Like Christine, many people experience the practical challenges, emotional strain and stigma of epilepsy, a neurological disorder affecting approximately 3 million Americans. For the 150,000 college students with epilepsy, however, life can be especially frustrating. These young adults must establish a new network of support and learn how to manage their condition, while juggling their social life and academic responsibilities. Besides giving up activities that characterize the college experience, epileptics must consider their seizure and health risks when facing typical dilemmas, like sharing a dorm room, making new friends, choosing a major and partying. “College isn’t an obstacle, but people with seizures need to be aware and mature enough to take good care of themselves,” says Eileen Whelihan, a licensed clinical social worker at the Indiana Comprehensive Epilepsy Center. “Personal responsibility goes a long way, but I know it’s frustrating for that age group because they just want to be like their peers."

Epilepsy is a group of disorders characterized by recurrent and spontaneous seizures. These episodes of disturbed brain function cause strange sensations, emotions and behavior, and sometimes convulsions, muscle spasms and loss of consciousness. Although one in 100 people will have a seizure in their lifetime, epilepsy is only diagnosed when a person has had more than one seizure unprovoked by a fever, metabolic disorder or severe head injury. Many people associate epilepsy with convulsive fits, but the disorder can manifest itself in different ways. People can experience absence seizures, characterized by brief staring spells, myoclonic seizures, massive muscle jerks, or the more recognizable tonic-clonic or grand mal seizures, which cause the body to convulse.

While there is no cure, more than a dozen types of antiepileptic drugs available. Treatment is highly individualized though and similar medications can produce different results and side effects. For patients whose seizures cannot be controlled by medications, neurologists may propose brain surgery, vagus nerve stimulation (where a device similar to a pacemaker is implanted in the brain) or investigational therapies, like the ketogenic program, a high-fat, low-carb diet. Although most cases of epilepsy can be controlled with just a few pills each morning, more than 30 percent of patients will continue to experience seizures despite aggressive drug treatment or other interventions. “At least half the time, the first medication works pretty well,” said Dr. Douglas Nordli, neurologist and director of the Comprehensive Epilepsy Center at Children’s Memorial in Chicago. “But for others, it’s a process of trial and error.”

The highest incidence of epilepsy occurs in the first year of life and older than 65 years old. However, there is a slight blip that can account for the forms of epilepsy that emerge in teenage and young adult years. Although treated with similar measures, epilepsy among this age group may have different causes, manifestations and outcomes.

“The fundamental difference is that it is epilepsy in the context of a developing brain,” said Dr. Nordli. “So we have great concerns about brain function and how the patient is doing from a cognitive, developmental, behavioral and psychiatric standpoint.” Repeated seizures can increase the likelihood of social and learning disabilities, brain damage—and even death. According to the National Institute of Neurological Diseases and Strokes, the center primarily responsible for funding epilepsy research, sudden unexplained death from epilepsy is a research priority. Recent studies suggest the risk of death in epileptics may be 25 times higher for those in their 20s to 40s–an especially frightening find for young adults.

Although the underlying causes of epilepsy are often unclear, medical professionals have found that sleep deprivation, heavy alcohol or drug use and stress are common and potent triggers for seizures. Neurologists advise patients to avoid these behaviors and to identify their personal triggers, which can include caffeine, flashing lights and hyperventilation. Fortunately, it’s a myth that sex can cause a seizure. “If you learn that you drink more of anything caffeinated and you start to have seizures, then maybe that’s a trigger for you,” says Eileen Whelihan, a licensed clinical social worker. “It’s a way of learning. The important thing we tell them is that if you find something is true for you then you need to pay attention to it.”

Dorm life, frat parties and classes packed with hundreds of new faces can overwhelm any undergrad. A study the Journal of Adolescent Health revealed that stresses from the daily routine of school and life keep 68 percent of college students awake at night. “So many kids just fall apart in college with the incredible suddenness of freedom,” says Maureen Tillman, licensed clinical social worker and creator of College with Confidence, a counseling service for parents and young adults. “There are so many different kinds of stresses, and it is not a very stable environment.” Free from nagging parents and the daily routine of high school, the university setting requires epileptics to adapt to a life where weekends start on Thursdays and study sessions can last until sunrise. “At home, I never would pull an all-nighter,” says Samantha Gassell, 20, a junior at Emerson College who began having myoclonic seizures in middle school. “But at college, everyone does their homework all night rather than right after school, and I just couldn’t do that.”

Gassell joined a sorority at Emerson College but quickly realized how hard it was to maintain a healthy sleep schedule. After being encouraged to attend late-night activities, she had to explain to her new sorority sisters that she couldn’t participate. “People don’t always understand how the severity of things like stress, drinking and sleep can really affect me,” Gassel says.

Christine has also had to learn how to reduce her exposure to seizure triggers. She tries to stay relaxed by using her free time during the day and writing down everything she needs to get done. (She carries a pocket calendar, keeps a Google Calendar and regularly scribbles “to do” lists on Post-Its.) Christine is also active in the University Chapel Choir, which allows her to pursue her love of singing and, as she declares, keep her sanity. But Christine knows her limits and her sleep requirement: eight hours. “I’ve always been a student first and foremost, so to have to change that is really weird for me,” she says. “Now I have to sacrifice school work for actual sleeping.” Driving can also be a challenge to independence since each state has different laws regarding epileptics. Christine, who is required by Illinois law to be seizure-free for six months before she can legally drive, plans to live in a city or near public transportation when she graduates. “Unless I have driver or maybe a limousine,” she adds with a smile.

Unlike other triggers, doctors understand how consuming alcohol can induce a seizure. Alcohol affects an inhibitory transmitter that reduces neural activity and sedates the brain. After a person has stopped drinking, however, the nervous system becomes irritable and excited, which can trigger a seizure. Since alcohol can also affect the stress hormone system and be dangerous to mix with medications, epileptics are instructed not to drink or to have no more than two drinks.

While most college students could make wiser choices about alcohol, many young adults with epilepsy feel that they miss out by abstaining. Previously, Christine drank in moderation but after she had three seizures following a night of drinking while studying abroad in South Africa, she stopped completely. The risk wasn’t worth the fun.

“I still go out with my friends but I sort of stay on the sidelines and watch. Inside, it’s still hard not to be able to participate fully,” says Christine. “I’m 21 years old and it sucks that I can’t go out and just have fun with my friends.”

In addition to managing a chronic illness, people living with a seizure disorder must develop a deep awareness and familiarity with their body. This can help them realize if they are pushing their limits or if they are experiencing an “aura,” the often indescribable feeling or strange sensation that can precede a seizure. For many, this requires making it routine to be hypersensitive to how they feel.

“If I’ve been out with friends, I’ll wake up the next day and just be super anxious and aware the entire day,” said Hannah Niequist, a dance teacher who has been seizure-free for several years. “It’s like I’m tricking myself into feeling that aura. I’m so just aware if I drink or am stressed or didn’t get enough sleep that it makes me feel uncomfortable and unsettled.”

People with seizure disorders also have to make decisions about telling others about their condition. Although no one can be legally forced to share their condition with a university, roommate, professor or employer, preparing others can make the situation less frightening and easier to manage. Tracy Schultz, community education coordinator for the Epilepsy Foundation, often reminds her clients their safety and academic success could be at risk. Depending on the severity and frequency of seizures, some people with epilepsy will tell friends not to call 911 since that can be expensive and unnecessary. For example, Christine, who wears a medical alert bracelet, tells friends to make sure she doesn’t hurt herself while seizing and wait for her to come out of it.

Still, it can be difficult to talk about epilepsy or to explain a seizure to a group of friends. While Christine has never had a seizure during class, students who have had seizures in a public place often feel embarrassed. (Some did not even want their name or story included in this article). “They may be hesitant to disclose for fear of sticking out or being different from their peers,” says Michelle Grace, health services director at the College of Lake County in Illinois. Nicole Roman, 23, who hasn’t had a full seizure for almost three years, still worries people will treat her differently. “I don’t want my friends to think they can’t come out with me or that they have to watch over me like a mom,” says Roman, who won’t always tell prospective bosses initially. “I just get afraid that there are some employers who don’t understand epilepsy and will disregard me for the job. But I don’t want anyone else choosing my path for me.” Other epileptics feel comfortable telling people about their seizures and view it as a way of educating others and sharing a significant aspect of their life. Most recently, disclosure has become even more important as the central theme of the Epilepsy Foundation’s “Talk About It” public education campaign. By collaborating with celebrities like Gregory Grunberg from the television series “Heroes,” this nationwide initiative hopes to raise awareness about epilepsy and increase funding for research. In 2005, NIH funding per patient with epilepsy was $39, while other conditions like multiple sclerosis, Parkinson’s and Alzheimer’s disease received more than $100 per patient. “When you look at research dollars, it seems markedly disproportional compared to other diseases that are far less common,” says Dr. Douglas Nordli. “Epilepsy is still in the shadows and there need to be more public awareness about how common it is.”

In college, disclosure can be especially important if students want academic assistance. The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act protect persons with disabilities from discrimination and ensure accommodations are available. But in the college setting, students must self-advocate.

“Once they graduate high school, they kind of fall through the cracks when it comes to assistance,” says Schultz. “Before college, they have a case manager or school psychologist helping them to navigate the system for specialized education. But when they graduate, they’re on their own.”

Many students seek help from university disability services. These offices can help draft letters to professors, provide assistive technology, like a note-taker or laptop, grant extra time or a separate space to complete assignments, and allow early course registration. While these offices can be a great resource, students who miss classes because of seizures must take the lead in getting the help they need.

“Some schools have great programs for students with disabilities but there are some schools where the disability office is one staff member,” says Schultz. “Sometimes they won’t even know what they’re dealing with since many people don’t understand epilepsy as much as they understand other disabilities.”

With auras, academics, stress, sleep and other issues to juggle, it’s not surprising that depression is the most frequent comorbid psychiatric disorder in people with epilepsy, affecting between 20 and 50 percent of patients. When Christine began experiencing weekly seizures, during what she calls the worst summer of her life, her condition began to affect her emotionally. “She has a different life,” says Christine’s mother, Maria Defilippis, who thinks the seizures and medications have changed her daughter’s personality. “Before she was always in control, nothing and no one could stand in her way. But now epilepsy has got her under control.” Christine faces additional frustrations because her epilepsy is not yet controlled. Despite taking medication and changing her lifestyle, she has not been able to fix her brain, and doctors haven’t either. For a week in July, she stayed in the hospital for a series of tests and scans. The findings, however, only confirmed neurologists’ predictions that she was ineligible for brain surgery since her seizures are not localized. Christine is also dealing with the debilitating side effects of her antiepileptic drugs, which cause blurred vision, vertigo and nausea. Since it is harder for her to read, test and write papers, she is stuck between wanting to up her dosage and living with the side effects. But Christine has not given up. At the end of the summer, she began a three-month clinical trial conducted by researchers at Johns Hopkins University to examine the impact of a modified Atkins diet on seizure frequency. While she thinks it may be working, Christine, who now eats pecans portioned out in small plastic baggies, is not sure how much longer she can go without carbohydrates. With the support of her parents and three younger sisters, Christine tries to assure herself that the weekly seizures will end and that she won’t be like this forever. In December, Christine visited MayoClinic, a prestigious medical center in Minnesota, for a second opinion and new treatment options. “We went through all the stages, like death. You’re shocked, then you’re in denial, and then you cry. And now I’m just mad as hell,” says Christine’s mother, who has found it hard to watch her daughter struggle to manage things she once handled with ease. It has been especially disheartening to see Christine consider giving up her life-long dream of becoming a doctor out of fear she won’t be able to handle the stress. Juggling college, a potential medical career and her search for a cure, Christine faces responsibilities and pressures beyond the average young adult. Besides learning the nuances of telling formal dates she’ll pass on the mixed drink, Christine has realized that the small things are not worth stressing about and life is not something she can plan. “The hardest part for me is trying to be a normal college student and still having to deal with this,” says Christine. “You want to be able to go out with your friends and have a good time but this is always in the back of your head — literally and figuratively.”


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