Updated October 2021
Epilepsy can be a scary diagnosis, especially when you don’t know much about it.
Epilepsy is the fourth most common neurological condition. The onset of epilepsy can happen at any time. An estimated 4% of people in the United States — 1 out of 26 — will develop epilepsy at some point according to the Epilepsy Foundation.
Seizures are a brain disorder caused by irregular and abnormal electrical connections. They can happen at any time and often are unpredictable.
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Taking Steps for Safety
Learning as much as you can about epilepsy when you are first diagnosed can help you figure out how to balance everyday life with the disorder. If you’ve had epileptic seizures, daily life is likely to change—especially if you live alone.
Here are seven ways to manage epilepsy for safety:
1. Find the right neurologist.
The first step in managing epilepsy is to establish a good relationship with your neurologist or epileptologist — someone who is an expert in treating this neurological disorder. Your doctor may prescribe medicines to help control the seizures. Other treatments, including surgical options, may be available if seizures continue despite medicines.
2. Track your seizure triggers.
People living with epilepsy find it helpful to pay attention to their seizure triggers when it comes to things they can control, such as stress, lack of sleep, or other lifestyle factors. Be aware that things you cannot control — such as illness, other medicines, hormonal changes, diet, and exercise — also can affect seizure activity.
3. Develop a seizure response plan.
It’s important to be prepared for a seizure so that those around you can help. A seizure response plan is a written document that provides personal information, emergency contacts, details about your specific seizures and epilepsy medicines, and information on what others can do to help you if you have a seizure. The Epilepsy Foundation has a worksheet to fill out and keep with you.
4. Let people know.
Share your seizure response plan with the people you spend the most time with. If you’re a student, share it with your roommates and close friends. If you’re working, share your plan with coworkers and close neighbors. Keep a copy in your purse or backpack in case you experience a seizure while out in public. Some people wear a medical alert bracelet or pendant, which helps first responders.
5. Enlist help with transportation.
One of the hardest things to deal with when you’re living with epilepsy is the possible loss of driving privileges and the independence that comes with it. To obtain or keep a driver’s license when diagnosed with epilepsy, your state may require you to prove that you’ve been seizure-free for a specified amount of time. While this restriction is for safety, it can be difficult (and expensive) to rely on public transportation or ridesharing apps. Talk to your family and friends to figure out ways they can help you get around.
6. Have a spotter.
Epilepsy may prevent you from taking part in certain activities, including adventure sports like scuba diving and skydiving. But even when swimming, you should take extra precautions — like making sure someone is watching and can help in an emergency. If you’re participating in an activity that would be unsafe during a seizure, it’s a good idea to use the buddy system and have a spotter on hand.
7. Join a support group.
If you’re living with epilepsy, you might consider joining a support group or reaching out to others who live with epilepsy. Having an outlet to share ways to manage life with epilepsy and knowing others who are going through similar experiences can be comforting and provide both support and ideas you can use.
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Life with Epilepsy
A good source of information for people living with epilepsy is the Epilepsy Foundation. This organization provides educational options, support services, and other resource lists (including transportation services information, help understanding health coverage, information about camps for kids with epilepsy, financial assistance, and more).
If you need a second opinion or more information on how to live your best life with epilepsy, contact the UPMC Comprehensive Epilepsy Center.
The UPMC Department of Neurosurgery is the largest academic neurosurgical provider in the United States. We perform more than 11,000 procedures each year. We treat conditions of the brain, skull base, spine, and nerves, including the most complex disorders. Whether your condition requires surgery or not, we strive to provide the most advanced, complete care possible. Our surgeons are developing new techniques and tools, including minimally invasive treatments. U.S. News & World Report ranks neurology and neurosurgery at UPMC Presbyterian Shadyside as among the best in the country. We also rank among the top neurosurgery departments in the U.S. for National Institutes of Health funding, a benchmark in research excellence.