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9 Steps to Take if You Have Drug-Resistant Epilepsy
1. Avoid your triggers whenever possible.
What activates a seizure in a person with one type of epilepsy may not trigger the same response in someone with another type of epilepsy, says Padmaja Kandula, MD, the director of the Epilepsy Center at New York-Presbyterian Weill Cornell Medical Center. And while seizures can occur randomly, some triggers are more common than others — including sleep deprivation and alcohol consumption, which can also impair your sleep, Dr. Kandula says. Aim for seven to eight hours of sleep per night, and talk to your doctor about whether you should drink alcohol.
2. Consider giving up driving for a while…
The goal of seizure treatment is that you experience no seizures at all, which is critical for your safety. This is especially the case when you’re driving. “Every state has different rules and restrictions in terms of guidelines for driving for people with epilepsy,” says Kandula. Most often, these outline the length of time someone must be seizure-free to have a license and may also require a physician’s clearance that says the person can drive safely, according to the Epilepsy Foundation. For a list of laws in your state, use the foundation’s search tool.
3. …but don’t fear going out in public.
Just because you may not be able to drive doesn’t mean you can’t take public transportation like buses and subways. “The subway is one of the safer places to be if you have a problem because you’ll get immediate attention there,” says Kandula, noting that many people are aware of health conditions like epilepsy and know how to get help quickly. Just don’t stand close to the edge of the platform — a rule that applies to everyone, with or without epilepsy.
4. Be selective about your activities.
“We like to keep people as active as they can be,” says Kandula. Aerobic exercise (like walking on a treadmill) may be a good option, she says. While swimming may not be recommended for everyone, if your doctor has given you the okay, make sure you swim in a well-supervised pool. “Riskier” sports, like scuba diving and skydiving, however, aren’t typically recommended for people with epilepsy, according to a study published in the February 2015 issue of the journalSeizure.
5. Stay safe at home.
If you have drug-resistant epilepsy, choose showering over bathing in a tub to lessen the risk of drowning, says Kandula. Rethink activities or chores that involve heights. For instance, it’s better to get a professional or a family member to climb a ladder to paint a very high wall or replace lightbulbs in a ceiling than to risk a fall.
6. Stay away from the stove.
The microwave is your best friend in this regard. If your epilepsy isn’t under control, the stove is a burn danger, says Kandula. Modern microwaves tend to have a lot of bells and whistles, so it’s easy to cook a variety of foods in them, she says. (For instance, many models have functions that can even cook fish.) If it’s an option for you, says Kandula, you can try out a meal delivery service, like Freshly, or if you’re eligible, a service like Meals on Wheels.
7. Embrace technology.
Having a supportive team of family and friends to depend on is always a good idea, but no one has to hover over you 24/7. Some people wear an FDA-approved smart band called Empatica Embrace, which can detect seizures and send alerts to a trusted loved one.
8. Rethink your diet.
A ketogenic diet — an eating plan that’s high in fat, moderate in protein, and very low in carbs — can induce a state of ketosis, in which the body draws its energy from fat rather than carbs. Kandula says that studies have shown that this diet can help young children who are suffering from devastating seizures, and the results are being extrapolated to adults. “We’re still in the preliminary stages of research,” says Kandula, “to see what seizure syndromes in adults and kids a keto diet may be effective in.”
A review published in the November-December 2019 issue ofEpilepsy Currents noted that while the keto diet has been shown to reduce the number of seizures, it can be tough to stick with. However, the authors note that the benefits can be almost immediate.
9. Don’t give up.
Just because two medications didn’t relieve your seizures doesn’t mean that others won’t. “A lot of people who have drug-resistant epilepsy get frustrated and think there’s no help,” says Kandula. “They accept the fact that this is how life is, but that’s not necessarily true. They need to get to the right person and epilepsy center to explore other options.”
Try going to a specialty center like a Level 4 epilepsy center, which provides complex forms of monitoring and extensive treatment, according to the National Association of Epilepsy Centers. Doctors there can discuss additional treatment options with you, including surgery and minimally invasive laser surgical options for certain seizure disorders, neurostimulation devices (which may be implanted in the chest or head), or even new medications. “Many people previously deemed drug-resistant can be helped or cured with these options,” Kandula says. Ask your primary care doctor or your neurologist for a referral, or call the treatment center directly and refer yourself.
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