When you're transitioning to adulthood with epilepsy, it suddenly becomes your job to take care of yourself. And you might have many questions.
Am I allowed to drive? What kind of job should I get? Can I have a baby safely?
Taking control doesn’t have to be intimidating. Your physician can help you learn how to manage your epilepsy yourself—all you need to do is ask the right questions.
Questions to ask
Bethany Thomas, CRNP, an epilepsy nurse practitioner at the Penn Epilepsy Center, suggests 7 questions that young adults should ask their physician.
Am I allowed to drive?
“Young adults are very curious about driving,” says Bethany. “They have a lot of questions about if driving is safe and legal.”
Many people with epilepsy are able to drive, but it’s something you need to discuss with your doctor. People with epilepsy are slightly more likely to be involved in car crashes, so doctors often recommend that people with poorly controlled seizures avoid driving.
There are also legal considerations. Every state has its own laws about driving when you have epilepsy.
For example, many states require you to be seizure-free for a certain period of time—often, 3 to 6 months. Some states require you to have a written record from your doctor, recommending that you be allowed to drive.
Can I get a job?
Employment is a big concern for many people with epilepsy. As Bethany says, “Patients ask if it will be harder for them to get a job, if they will have limitations on types of jobs, or if they have to disclose it at a job interview.”
It is illegal for potential employers to refuse to hire you because of epilepsy—in fact, they can’t even ask you about it at the interview.
However, there are some exceptions. Certain jobs, such as an airline pilot, could put you or others in danger, and most people with epilepsy cannot be hired for those jobs.
Bethany recommends discussing employment concerns with your doctor. “We can point you toward resources like employment workshops that can help you navigate the workforce with epilepsy.”
Can I drink alcohol?
“This is the #1 question I get from young adults,” says Bethany. “Drinking an excessive amount of alcohol can bring on seizures. The general rule of thumb is to limit yourself to two alcoholic drinks, whether that’s two beers, two glasses of wine, et cetera.”
Even though the two-drink rule works for many people, everyone is different, so it’s always important to ask your doctor about alcohol.
Bethany warns that alcohol can interact with certain seizure medications, increasing your risk of having seizures or making side effects of your medication worse.
How can I remember to take my medication?
It seems basic: Take your meds. But it’s estimated that up to half of epilepsy patients don’t take their drugs as directed.
Missing medication can cause seizures, whether you have controlled or uncontrolled epilepsy. It’s also the main reason that people have breakthrough seizures—seizures after a long period of being seizure-free.
Bethany says this is something your doctor can help with.
“Compliance—remembering to take your medication and taking it correctly—is a big problem for many young adults,” she says. “We can help you come up with ways to remember, or we may be able to change your dosing schedule.”
For example, there are the classic daily pill boxes. Or you can set an alarm for taking your meds. And of course, there’s an app for that. MediSafe, Dosecast, and PillMonitor are among the many apps available for free on iOS and Android platforms.
Can I still get pregnant?
Many women with epilepsy get pregnant, and most give birth to healthy, normal babies. However, epilepsy can affect a mother’s health. Pregnant women with epilepsy have an increased risk of complications, including vaginal bleeding or high blood pressure.
Pregnancy can also increase the chance of seizures in women with epilepsy. “Before getting pregnant, you need to talk to your doctor about your medication—if you’re going to stay on it, if you need to make adjustments, for example,” Bethany says.
What about birth control?
“Unplanned pregnancies, especially in women who are young or don’t get the right prenatal care, can be dangerous,” Bethany says. “They’re even more dangerous in women with epilepsy. If you are sexually active but not trying to get pregnant, it’s very important to use birth control.”
An oral contraceptive, or “the pill,” has a 99% success rate if used correctly. But that might not be true if you’re on epilepsy medication.
“The pill can lower the effectiveness of epilepsy medicine, increasing the risk of seizures,” Bethany says. “And certain epilepsy medications can lower the effectiveness of the pill, increasing the risk of an unwanted pregnancy.”
Bethany encourages young women with epilepsy to talk with their physicians about the pill and other contraception methods.
Where can I get counseling?
“Not enough people ask me about this, but it’s so important,” says Bethany.
“Epilepsy can be socially isolating. Young adults see their friends staying out late, drinking, not having to take medication—and they may feel left out. They may get nervous about having a seizure in public, or they may be embarrassed of low sex drive that comes from some antiseizure medications.”
These fears and insecurities can lead to depression, but patients aren’t always quick to ask for help.
Bethany explains, “There is a huge stigma about depression, so patients aren’t that open about it. But it’s not something to be ashamed of. Depression affects up to 50% of people with epilepsy, so it’s very common.”
Bethany recommends therapy for everybody with epilepsy who has depression or anxiety.
“Be open about it and ask for help before it becomes problematic,” she advises. “There are plenty of resources and ways to cope. Your doctor can help you find counseling. He can also talk to you about the Epilepsy Foundation’s support programs, which are very helpful.”