I recently saw one of my patients with epilepsy who is doing really well. He hadn't had any seizures for more than a year. After telling me how things had gone over the preceding months and celebrating his seizure freedom, he asked me what else he could do to continue to be free of seizures.
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That kind of patient exchange is ideal for an epilepsy specialist like me: A patient who is excited to learn as much about the disease as possible and willing to take an active role in managing it—because what patients do in their day-to-day lives can significantly affect seizure control.
Here are some of the strategies that will help any epilepsy patient manage his or her disease better. I shared all but the first one with my patient.
Consult a specialist. Epilepsy is a chronic disease that can last a lifetime so it's important to establish a relationship with a neurologist who specializes in the disease. He or she will have more detailed knowledge of medications, treatment, and research. If you are not already connected to an epilepsy specialist, the National Association of Epilepsy Centers has a helpful resource to identify an epilepsy center in your area.
Determine the right medication. Treatment is not one-size-fits all. Finding the appropriate medication or treatment for you involves collaborating with your physician. The two of you may need to work with different drugs and dosages until you find the most effective one that causes the fewest side effects.
Take your medication as directed. This seems obvious but I can't tell you how many of my patients skip their medication. They may stop taking it if they feel better or if they don't have a seizure for a long time. Or they may simply have busy lives and forget. It's important to understand that taking the medication every day is the key to controlling your seizures. Not only can it help minimize or eliminate seizures, taking your medication regularly also helps reduce the risk of sudden unexpected death in epilepsy (SUDEP). As its name suggests, SUDEP happens suddenly in otherwise healthy people with epilepsy, usually while sleeping and often around the time of a seizure. Some researchers suspect an irregular heartbeat caused by the seizure. Others say people suffocate from impaired breathing, fluid in the lungs, and lying face down in the bed.
Don't skimp on sleep. Lack of sleep is a common trigger for seizures. Be sure to allow yourself at least eight hours every night. If you experience insomnia, sleep apnea, or other sleep disorders, consult with a sleep specialist. I try to make a special point to talk to new parents and college students about making sleep a priority—it often can be difficult for both of these groups.
Limit alcohol. Drinking too much can interfere with sleep, and it also increases the risk of breakthrough seizures. You may also forget or not bother to take your medication if intoxicated or hung over.
Don't be afraid to exercise. Not a lot of data exist on the effect of exercise on epilepsy, but staying active has so many other benefits, including improving sleep and energy. If you are uncertain about what forms of exercise are safe for you, talk to your doctor. Your exercise plan may need to be tailored to fit your epilepsy type and other medical conditions.
