Renee Rangel-Espinoza, 43, was diagnosed with epilepsy three years ago, a resurgence of episodes that first appeared in her early 20s and for many years went into remission. “Before I got seizures,” she says, “I was getting what we call auras [the sensations that precede a seizure] or deja vu from high school on, not understanding what triggered [them].” Auras can come an hour or just a minute before a seizure and may involve nausea, headaches, anxiety, or a shift in the perception of smell, sight, or sound.
In 2001 she was living in Los Angeles with her ex, who would replay Ricky Martin music videos over and over. She noticed, during Martin’s cover of “I Can Go the Distance,” from the Disney movie Hercules, that her auras were getting stronger—so strong that she soon was out with a heavy seizure. To remedy the situation, she went on a medication called Topamax. It stopped the seizures, but she continued to experience auras.
“So I made a note and found out that my seizures are triggered by [the] sounds of certain music, lyrics, depending on the voice or the person that sings and how they sing it,” Rangel-Espinonza says. “Now I've learned that when I listen to music, if there is [a song] that I think might trigger my auras, I change it right away, or my hubby may have to. I even have to run out of stores at times, because of songs.” Other things she’s found that trigger her seizures include stress, caffeine, alcohol, and smoke. Her doctor’s advice: Stop smoking and drinking. “I had to make some drastic changes,” she says.
While anti-seizure medication is Western medicine’s traditional way to control and treat epilepsy, for some patients, learning and avoiding their triggers has become an important additional form of seizure prevention.
The Epilepsy Foundation of America website lists a range of commonly reported seizure triggers, including sleep deprivation, fevers, or other illnesses, flashing bright lights or patterns, alcohol or drug use, stress, hormonal changes (particularly a problem for some menstruating women), poor diet, low blood sugar, and excess caffeine.
The organization writes, “Some people may find that seizures occur in a pattern or are more likely to occur in certain situations. Sometimes these connections are just by chance, but other times it’s not. Keeping track of any factors that may precipitate a seizure (also called seizure triggers) can help you recognize when a seizure may be coming.” The EFA recommends recording seizures in a notebook, keeping track of the time of day and environmental factors that could be triggers.
Lisa Vitagliano, now 46, was 13 when she had her first seizure. She says she now knows exactly what might bring on an episode. “The biggest trigger is stress/anxiety,” she says, “It actually can be good anxiety—like looking forward to going to a concert or on a trip. When we get there, I might have the seizure. Get myself too worked up and then it hits.”
Her diagnosis is “intractable complex partial seizures.” To attempt to control them, Lisa takes five medications, a total of 5,000 milligrams of various compounds a day. Even on these drugs, she has breakthrough seizures, especially when she makes the common error of missing a dose. Monitoring triggers is an important part of her self-care on top of the medication, a preventative measure in case of flare-ups.
“For me,” explains Vitagliano, “learning to recognize [my triggers] was pretty simple, as [normally] with medications I have only three to four seizures a month, but I have had clusters of six to seven in a day when stressed.” Through observation of these potential triggers, and a subsequent shifting of her lifestyle, Vitagliano says she was able to drastically reduce her frequency of attack. It is important to stress the word “potential,” though, because epilepsy, seizures, and their causes continue to be clouded by ambiguity and questions that even the most expert neurologist can’t always answer.
“In general, we always discuss potential triggers [with patients],” says Heidi Kirsch, an associate professor of clinical neurology and radiology at the University of California, San Francisco, Epilepsy Center. “I can't really think of a situation where we wouldn't, unless the patient had little or no insight into the seizures because they were cognitively unable to observe the pattern, and in that case we would talk to the family or caregiver. We may or may not offer a huge list, but typically ask the general question as well as probing for common triggers like sleep deprivation, menstrual cycle, etc.”
Kirsch works in an epilepsy clinic, so is well versed in the complex and sensitive treatments for triggers that include lifestyle shifts, medication, keeping a log, and talk therapy to cope with the stress of having epilepsy. “Talk therapy is helpful for anyone with a chronic disease,” she says. “Support groups or peer groups can also be a great alternative.” However, not all doctors are so well-tuned to the complexity and sensitivity of epilepsy and its triggers, leaving a heavy responsibility on the patients.
For Michelle Phillips, 31, of Liverpool, the main triggers are stress and tiredness. “I was only diagnosed at 16,” she says. “I learned my triggers the hard way like most people, I suppose. I was halfway through exams at school and suddenly started having eight to 10 grand-mal seizures throughout the day and night. I was a typical stressed teenager, [who] also liked alcohol but soon realized it did my brain no good.”
Phillips cut out alcohol and worked to reduce her stress, but also had to collaborate with doctors to find medications to control her intense and dangerous seizures. “I feel I have been used as a guinea pig in regards to medication over the years,” she said. “I have been hospitalized three times due to being over-medicated, had Bell’s Palsy and a mini stroke as a result. I also gained a lot of weight when first diagnosed, which was hard at 16. The medication made me more tired, which was a trigger; I then became stressed about it, which again was a trigger. It became a vicious cycle. I only found the right medication for me when I was 21.”
“I was told by doctors a long list of things I couldn’t do, including work and have a family, and was given a box of tablets,” Phillips goes on. “They wanted my family to prepare to look after me for the rest of my life. The doctors were very negative about my condition. I sought out private counseling as I didn’t want to live by a can’t-do attitude. It was adding to my stress levels.” She says learning the inner workings of her emotions and her body in counseling, and careful observation in her daily life, helped to regulate her disorder. She and her partner are now raising a 9-year-old son.
“There are certainly people whose seizures get a whole lot worse with sleep deprivation, alcohol use, etc. (e.g. when going away to college and the switch to the typical college lifestyle) and find that as they experiment with these triggers, they can improve control of their seizures,” Kirsch says. “However, I would not call this a ‘cure’ per se.”
“Some people will stop meds to observe their triggers, which is not the safest route,” explains Louis Ptacek, a professor of neurology at the University of California, San Francisco. He advises a combination approach—working with doctors to find the right medication, while still observing patterns in seizures. “Some people still have seizures, even with very good anti-convulsant drugs. So knowing what triggers an episode, what can bring on their attack, their seizures may come better under control.”
Not every person with epilepsy has the luxury of recognizing these factors. Sometimes the seizures just hit with no rational explanation. But when relevant, adjusting one’s lifestyle to limit triggers can in some cases reduce the amount of drugs needed to control the attacks. “There is a reasonable way to decrease or prevent seizures,” explains Ptacek, “but one also has to be careful. Each person’s experience is valuable and important … I always take people talking about triggers very seriously. But it doesn’t affect the initial medical plan. Certainly, paying attention to triggers can help people reduce medication or get off medicine altogether.”
“If someone can truly control seizures through avoidance of triggers alone, than I suppose we might discuss going without medication. But there would have to be a careful discussion of risks and benefits,” Kirsch says.
Caitlin Currie was diagnosed with Juvenile Myoclonic Epilepsy (JME) at age 11 after having a seizure and falling down the stairs. Currie has been on medication for her epilepsy for 12 years. For many of those years it was just medication that managed her seizures—she went through a number of combinations before finding one that worked. But sometimes she would max out a dosage or experience intense side effects and have to switch. Then, after more than a decade of relying on medication alone, she started looking for triggers.
“For me,” she says, “the process of realizing what my triggers are meant just looking for patterns in my seizures. Time of day, time of month, etc. It came down to a few things that I could really control: sleep deprivation, stress, and the start of my menstrual cycle. As an adolescent and even in college, sleep deprivation and stress were some of the hardest things to avoid. However, I was able to alter my school schedule to start later, and being active in sports is a good way for me to relieve stress. I can't really control my menstrual cycle, but being on birth control helps regulate my cycle and hormones so I know when to expect it each month.”
She has been seizure-free for more than a year now. “It has to do with a combination of medication changes and minimal lifestyle changes. Though I've been seizure-free I'm careful to avoid my known triggers or others things that could potentially negatively affect me.”
“There is something very important to learn from triggers in some subsets of patients,” Ptacek says. He cites the different genetic and environmental causes of epilepsy and the importance of understanding how one impacts the other, or vice versa. “It’s not the case that observing triggers is going to solve epilepsy. But when some environmental trigger pushes them over the edge and into the abyss below—into seizures—observing triggers helps a patient avoid attacks readily and also helps [the medical world] understand the interaction between genetic tendencies towards epilepsy and their interaction with environmental factors.”