What happens after an epilepsy diagnosis?

Young woman having an EEG test

The first thing to know, after you’ve been diagnosed with epilepsy, is that you’re not alone: 1 in 26 people in the United States has epilepsy.

With more than 30 anti-seizure medications available, more than two-thirds of those people can have seizures controlled with medication, along with lifestyle changes.

What are some lifestyle changes that help control epileptic seizures?

Take medication on time

It goes without saying that to treat epilepsy successfully you should always take your anti-seizure medication on time. Yet it’s known that for chronic diseases, the adherence rate for medication is only about 50%.

To take medications on a regular basis with no missed dosages, you need to have a system. One of the best systems is to use an inexpensive pill organizer. Pill organizers have a compartment for each day of the week. Electronic reminders using smartphones can also be helpful.

Sleep long enough and well enough

Sleep health is another important factor. Sleep health consists of duration and quality.

About a third of people in the U.S. get less than seven hours of sleep each night. And sleep quality depends on sleep that fits your circadian or body rhythms; you should wake up at the same time every morning and go to bed at a time that would allow at least seven hours of sleep.

You should also dim indoor lighting and slow your life and mind down about one hour before bedtime. Don’t watch television or use electronics in bed. A common sleep problem, especially in men, is sleep apnea. If someone has snoring and daytime drowsiness or fatigue, sleep apnea should be considered. Testing for sleep apnea is now easier, as home sleep studies are available.

Avoid seizure triggers

Avoiding seizure triggers, such as flashing lights and video games played in the dark, is essential for controlling certain kinds of epileptic seizures. Some medications can trigger seizures, including over-the-counter sleeping medications, newer antibiotics and some antidepressants. Bupropion, an antidepressant also used to help people stop smoking, could also trigger seizures in some people.

Incorporate exercise into your routine

Exercise improves energy, mood and helps relieve stress. Since stress is a common trigger for seizures and regular exercise reduces stress, exercise may reduce the number of seizures. Be sure to talk to your neurologist to see what types of exercise would be safe for you. A study from Norway of exercise in women with uncontrolled seizures showed that regular exercise led to a significant reduction in the number of seizures.

Who are the physicians or medical professionals you should connect with and regularly see?

Patients with epilepsy should be evaluated by a neurologist. If someone fails two medications at adequate doses and continues to have seizures, they should be referred to an epilepsy specialist.

What are the options if I’m still having seizures despite significant lifestyle changes?

If someone is still having seizures despite medication compliance and lifestyle changes, there are multiple non-pharmacologic treatment options available, including neuromodulation devices and possible surgery of the seizure focus.

If, after trying two or three anti-seizure medications, your seizures remain poorly controlled, your neurologist may want to admit you to an epilepsy monitoring unit (EMU) in a hospital setting to record a seizure on video and EEG. This can help you and your care team find out whether you’re having epileptic seizures versus non-epileptic events, since non-epileptic events shouldn’t be treated with anti-seizure medication.

Non-epileptic events are often related to early traumatic childhood experiences or a history of abuse, and they might require counseling.

Admission to an EMU can also clarify the epileptic seizure type and determine if you might be a candidate for epilepsy surgery or an implantable neuromodulation device. In the last 10 years, there have been important advances in epilepsy surgery and devices that may reduce or completely control epileptic seizures.

Can you lead a normal life after an epilepsy diagnosis?

Many people can lead normal lives with epilepsy, aside from having to take a daily medication to control their seizures. Many people with epilepsy can maintain jobs, education, relationships and independence. If you maintain six months or more of seizure freedom, you can even drive, although individual circumstances can vary from person to person. It’s best to follow the advice of your doctor.

For a useful resource, visit The Epilepsy Foundation.

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