Epilepsy FAQ and Resources
If you or a loved one has epilepsy, you probably have a lot of questions. The team at the OHSU Comprehensive Epilepsy Center is here to help you:
- Get answers to common questions.
- Find resources to help you and your family manage life with epilepsy.
FAQ
You’ll find more information on our Understanding Epilepsy page.
Epilepsy basics
Epilepsy can result from conditions that affect the brain. Examples include stroke, brain injury or brain infection. Some result from an inherited genetic condition. But in about half of cases, doctors don’t know the cause.
Not necessarily. Epilepsy means the brain has an electrical problem that causes a tendency to have seizures. There are also other types of seizures or seizure-like episodes, such as:
Provoked seizures: These seizures result from outside causes, such as low blood sugar or withdrawal from drugs or alcohol.
Seizure-like episodes from medical causes: Some people have episodes that look like seizures but that are not caused by an electrical problem in the brain. Instead, they are caused by another medical condition, such as fainting (syncope), a sleep disorder, a heart problem, a migraine or a stroke.
Nonepileptic seizures: This type of seizure may look like an epileptic seizure, but it is caused by trauma and stress, not an electrical problem in the brain. Stress and traumatic experiences can build, causing a disconnect between your brain and body. This can lead to a nonepileptic seizure. Learn more about nonepileptic seizures and treatment.
See a doctor: If you or a loved one has a seizure, it’s important to see a doctor for an evaluation. Learn how we diagnose seizures at the OHSU Comprehensive Epilepsy Center.
There is no cure for epilepsy. But most people can control their seizures by taking medications and avoiding seizure triggers. Many people find success with the first medication they try. Learn more about epilepsy treatment options at OHSU.
Most people with epilepsy manage the condition and live a full, active life. Certain factors can increase the risk of epilepsy-related death:
- Serious health conditions: Seizures may result from a stroke or brain tumor, conditions that increase the risk of death.
- Injuries such as falls: Injuries that happen during a seizure can be life-threatening.
- Long-lasting seizures: A seizure lasting five minutes or longer is known as status epilepticus. It is a life-threatening medical emergency. Don’t stop taking your medication without talking with your doctor, as this can increase the risk of status epilepticus.
- SUDEP: It’s rare, but sudden unexpected death in epilepsy (SUDEP) can occur, especially in people who have uncontrolled seizures. The causes of SUDEP are not completely known, but experts believe it may result from changes in breathing or heart rate during a seizure. Heart rhythm changes can also cause sudden death in people who do not have seizures, but it’s much more common in people with poorly controlled epilepsy.
Seizures can last from a few seconds to a few minutes. Absence and atonic seizures usually last less than 20 seconds. Focal seizures typically last less than two minutes. Tonic-clonic seizures typically last one to three minutes. If a seizure lasts longer than five minutes, seek immediate medical attention.
Status epilepticus means:
- A seizure lasts longer than five minutes OR
- A person has more than one seizure within five minutes without returning to normal consciousness
Long seizures are medical emergencies that can lead to permanent brain damage or death. These seizures can often be stopped only with medication. That’s why it’s important to get immediate medical help for any seizure lasting longer than five minutes.
Epilepsy is one of the most common conditions affecting the brain. It occurs in about 1% of the U.S. population. The Centers for Disease Control and Prevention estimates that about six in 1,000 children under age 18 have active epilepsy.
Most children of people with epilepsy don’t develop seizures or epilepsy. If you have epilepsy, it’s possible that your children may have a slightly higher — but still very low — risk of developing epilepsy.
You will probably want to talk about this with your doctor. At OHSU, we offer genetic testing and counseling to help identify the risk with your specific type of epilepsy.
Epilepsy treatment
It’s important to receive treatment because uncontrolled seizures can cause severe injuries or death. Although repeated seizures affect the brain, much of the danger comes from secondary effects. Seizures can cause falls, leading to broken bones and head injuries. People who have seizures should not swim or drive.
The most common and often the most successful treatment for epilepsy is anti-seizure medication. Medication can stop seizures in about 70% of people with epilepsy. Your doctor will recommend a medication or medications based on factors such as:
- The type of seizures you have
- Your age and gender
- Possible side effects of the medication(s)
You and your care team will work together to find the most effective dose without side effects. If the first medication doesn’t work, you may try others. If medications don’t help, you might consider special diets, surgery or minimally invasive procedures and devices. Learn more about epilepsy treatment options at OHSU.
Research has shown that special diets can help reduce seizures in some children and adults with epilepsy. Two of the most common dietary plans recommended for people with epilepsy are the ketogenic and the modified Atkins diets.
Ketogenic diet: This high-fat, low-carbohydrate diet works well in children, especially those whose seizures have not responded to several seizure medicines. For every one gram of carbohydrate and protein, the diet recommends three to four grams of fat from sources such as:
- Butter
- Heavy whipping cream
- Mayonnaise
- Olive or canola oils
A ketogenic diet has reduced or prevented seizures in many children whose seizures could not be controlled by medications. It also has proved effective for some adults with epilepsy, though we rarely recommend it because it can be difficult to follow.
Modified Atkins diet: The modified Atkins diet (MAD) is also high in fat and low in carbohydrates but is less restrictive than the ketogenic diet. It has been used for people with epilepsy since the early 2000s, and is the most common diet recommended for adults with epilepsy.
Unlike the traditional Atkins diet, the modified version:
- Maintains a low carbohydrate limit indefinitely rather than gradually increasing it after an initiation period.
- Encourages, rather than requires, high-fat foods.
Studies have shown that the modified Atkins diet substantially reduces seizures in almost half of adults who try it.
Living with epilepsy
Every state has driving restrictions for people with epilepsy. To get a driver’s license, you may need to provide information such as:
- Documentation that you have not had a seizure for a certain period, ranging from a few months to more than a year.
- A letter from your health care provider stating that seizures:
- Don’t distract you from driving
- Happen only during sleep (nocturnal seizures)
- Have warning signs, such as an aura
The Epilepsy Foundation maintains a database on driving laws where you can find the rules in your state.
You may be concerned that exercise or sports could trigger seizures, but physical activity generally provides more benefits than risks. Exercise can help many patients manage seizures. Playing sports can also boost physical, mental and emotional well-being.
At the same time, people with epilepsy should try to avoid sports-related injuries (like everyone else), as they can increase the risk of seizures. Sports such as rock climbing or scuba diving may not be advised for someone with epilepsy. Talk with your doctor about good options for you.
Yes, people with photosensitive epilepsy can have seizures triggered by:
- Flashing lights
- Bold or contrasting visual patterns
- Video games
Anti-seizure medications help reduce the risk of seizures. But if these triggers have affected you before, it’s best to avoid them.
For most people, one drink a day won’t trigger seizures. Key things to know about alcohol include:
- Binge drinking (four or more drinks for women, five or more for men) increases the risk of seizure.
- Abruptly stopping heavy alcohol use can trigger seizures. For people with epilepsy, it may be safer to taper off.
- Alcohol can affect how your body processes medication, making it less effective.
- Alcohol disrupts sleep, and sleep deprivation can lead to seizures.
- Reactions to alcohol vary person to person. If you have more seizures during or after drinking, you may need to limit or stop your intake.
With proper prenatal care, most women with epilepsy have healthy babies. If you have epilepsy and are thinking about starting a family, speak with your primary care provider, your neurologist and your other providers before becoming pregnant. You and your team can decide when the time is right.
Here are some key issues to discuss with your care team:
- Certain anti-seizure medications can affect fertility, reduce the effectiveness of hormonal birth control methods, and increase the risk of birth defects. Your team can help you choose the most effective medication with the fewest side effects. Do not stop taking medications without talking with your doctors.
- Seizures during pregnancy can affect the baby by:
- Leading to falls or other trauma that hurts the baby, causes a miscarriage or causes premature separation of the placenta.
- Causing premature labor and birth.
- Reducing oxygen to the baby.
- Slowing fetal heart rate.
- If you haven’t had a seizure in nine months or longer, you have a high chance of remaining seizure-free during pregnancy. Your care team will evaluate how well your medication is working in recommending any adjustment in your treatment.
- Healthy habits are important for any woman considering pregnancy. They also help lower seizure risk.
- Take prenatal vitamins that provide at least 0.4 mg of folic acid daily, before trying to conceive, to help reduce the risk of birth defects.
- Eat a healthy diet for appropriate weight gain during pregnancy.
- Get plenty of sleep.
- Avoid alcohol, tobacco, caffeine and drugs (outside of medications).
- Prenatal care helps prevent and manage problems. Your medication blood levels will be monitored for safety. Get regular checkups, and let your team know about any seizures or other issues as soon as possible.
Yes, epilepsy can be linked to physical and mental health issues in children and adults, such as:
- Mood disorders, such as anxiety and depression
- Problems thinking, including difficulties with attention, learning, memory or language
- Social difficulties related to stigma and limits on driving or social activities
If you or a loved one has epilepsy, it’s important to talk with your care team about these issues. The right treatment can help you function at school and at work. It can also help control seizures and improve your quality of life.
Resources for patients and families
Help line
Epilepsy Foundation 24/7 Helpline, with trained specialists to answer questions toll-free:
- English: 800-332-1000
- Español: 866-748-8008
General information and support
- Epilepsy Foundation, a national nonprofit with more than 50 affiliates throughout the country
- National Association of Epilepsy Centers, a national nonprofit of more than 230 epilepsy centers (members) across the country
- American Epilepsy Society, a professional organization to promote research and the sharing of epilepsy information and insights
Managing epilepsy
- Managing Your Epilepsy, Epilepsy Foundation
Information for parents and caregivers
- Parents Have a Special Role, Epilepsy Foundation
- Parents and Caregivers, American Academy of Pediatrics, National Coordinating Center on Epilepsy
Information for teens
- Teen FAQ, Epilepsy Foundation
- Living With Epilepsy: About Teens With Epilepsy, Epilepsy Foundation
For patients
- Referral: To become a patient, please ask your doctor for a referral.
- Questions: For questions or follow-up appointments, please call 503-494-7772.
- OHSU care for children and teens with epilepsy
Location
Parking is free for patients and their visitors.
Mark O. Hatfield Research Center, 13th Floor
3250 S.W. Sam Jackson Park Road
Portland, OR 97239
Map and directions
Refer a patient
- Refer your patient to OHSU.
- Call 503-494-4567 to seek provider-to-provider advice.