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WHAT YOU NEED TO KNOW:
What is epilepsy?
Epilepsy is a brain disorder that causes seizures. It is also called a seizure disorder. A seizure means an abnormal area in your brain sometimes sends bursts of electrical activity. A seizure may start in one part of your brain, or both sides may be affected. Depending on the type of seizure, you may have movements you cannot control, lose consciousness, or stare straight ahead. You may be confused or tired after the seizure. A seizure may last a few seconds or longer than 5 minutes. A birth defect, tumor, stroke, dementia, injury, or infection may cause epilepsy. The cause of your epilepsy may not be known. If your seizures are not controlled, epilepsy may become life-threatening.
How is epilepsy diagnosed?
Your healthcare provider will ask about your health conditions and what medicines you take. Epilepsy is usually diagnosed if you have at least 2 seizures within 24 hours. It may also be diagnosed if you have 1 seizure but are likely to have more. Your risk is higher with a family history of epilepsy. A brain scan may also show signs of epilepsy that make another seizure likely. Tell the provider how close together the seizures were if you had more than one. Your healthcare provider will ask for a detailed description of each seizure. If possible, bring someone with you who saw you have a seizure. You may also need any of the following:
- An EEG records the electrical activity of your brain. It is used to find changes in the normal patterns of your brain activity.
- CT or MRI pictures may be used to check for abnormal areas. You may be given contrast liquid to help your brain show up better in the pictures. Tell the healthcare provider if you have ever had an allergic reaction to contrast liquid. Do not enter the MRI room with anything metal. Metal can cause serious injury. Tell the healthcare provider if you have any metal in or on your body.
- A PET scan is used to see activity in areas of your brain. You are given radioactive material that helps healthcare providers see the activity better.
- A SPECT scan uses radioactive material to find where the seizure started in your brain. This scan may be done if other scans do not show where the seizure started.
How is epilepsy treated?
The goal of treatment is to try to stop your seizures completely. You may need any of the following:
- Medicines will help control your seizures. You may need medicine daily to prevent seizures or during a seizure to stop it. Do not stop taking your medicine unless directed by your healthcare provider.
- Surgery may help reduce how often you have seizures if medicine does not help. Ask your healthcare provider for more information about surgery for epilepsy.
What else do I need to know about epilepsy?
- Sudden unexplained death in epilepsy (SUDEP) is a rare complication of epilepsy. In 1 year, 1 adult in 1,000 adults with epilepsy will have this complication. The risk of SUDEP increases if you have 3 or more generalized tonic-clonic seizures in 1 year. Your risk also increases if you have nocturnal seizures (seizures during sleep). After a nocturnal seizure, your breathing can become shallow.
- Your healthcare provider may recommend a change in medicine to decrease the number of seizures. For nocturnal seizures, he or she may recommend that someone sleep near you. The person must be older than 10 years. The person must also be close enough to know that you are having a seizure.
What can I do to prevent a seizure?
You may not be able to prevent every seizure. The following can help you manage triggers that may make a seizure start:
- Take your medicine every day at the same time. This will also help prevent medicine side effects. Set an alarm to help remind you to take your medicine every day.
- Manage stress. Stress can be a trigger for epilepsy. Exercise can help you reduce stress. Talk to your healthcare provider about exercise that is safe for you. Illness can be a form of stress. Eat a variety of healthy foods and drink plenty of liquids during an illness. Talk to your healthcare provider about other ways to manage stress.
- Set a regular sleep schedule. A lack of sleep can trigger a seizure. Try to go to sleep and wake up at the same time every day. Keep your bedroom quiet and dark. Talk to your healthcare provider if you are having trouble sleeping.
- Limit or do not drink alcohol as directed. Alcohol can trigger a seizure, especially if you drink a large amount at one time. A drink of alcohol is 12 ounces of beer, 1½ ounces of liquor, or 5 ounces of wine. Talk to your healthcare provider about a safe amount of alcohol for you. Your provider may recommend that you do not drink any alcohol. Tell him or her if you need help to quit drinking.
What can I do to manage epilepsy?
- Keep a seizure diary. This can help you find your triggers and avoid them. Write down the dates of your seizures, where you were, and what you were doing. Include how you felt before and after. Possible triggers include illness, lack of sleep, hormonal changes, alcohol, drugs, lights, or stress.
- Record any auras you have before a seizure. An aura is a sign that you are about to have a seizure. Auras happen before certain types of seizures that are in only 1 part of the brain. The aura may happen seconds before a seizure, or up to an hour before. You may feel, see, hear, or smell something. Examples include part of your body becoming hot. You may see a flash of light or hear something. You may have anxiety or déjà vu. If you have an aura, include it in your seizure diary.
- Create a care plan. Tell family, friends, and coworkers about your epilepsy. Give them instructions that tell them how they can keep you safe if you have a seizure.
- Find support. You may be referred to a psychologist or social worker. Ask your healthcare provider about support groups for people with epilepsy.
- Ask what safety precautions you should take. Talk with your healthcare provider about driving. You may not be able to drive until you are seizure-free for a period of time. You will need to check the law where you live. Also talk to your healthcare provider about swimming and bathing. You may drown or develop life-threatening heart or lung damage if you have a seizure in water.
- Carry medical alert identification. Wear medical alert jewelry or carry a card that says you have epilepsy. Ask your healthcare provider where to get these items.
How can others keep me safe during a seizure?
Give the following instructions to family, friends, and coworkers:
- Do not panic.
- Do not hold me down or put anything in my mouth.
- Gently guide me to the floor or a soft surface.
- Place me on my side to help prevent me from swallowing saliva or vomit.
- Protect me from injury. Remove sharp or hard objects from the area surrounding me, or cushion my head.
- Loosen the clothing around my head and neck.
- Time how long my seizure lasts. Call 911 if my seizure lasts longer than 5 minutes or if I have a second seizure.
- Stay with me until my seizure ends. Let me rest until I am fully awake.
- Perform CPR if I stop breathing or you cannot feel my pulse.
- Do not give me anything to eat or drink until I am fully awake.
Call your local emergency number (911 in the US), or have someone else call, for any of the following:
- Your seizure lasts longer than 5 minutes.
- You have trouble breathing after a seizure.
- You have diabetes or are pregnant and have a seizure.
- You have a seizure in water, such as a swimming pool or bathtub.
When should I call my doctor?
- You have a second seizure within 24 hours of the first.
- You are injured during a seizure.
- You feel you are not able to cope with your condition.
- Your seizures start to happen more often.
- You are confused longer than usual after a seizure.
- You are planning to get pregnant or are currently pregnant.
- You have questions or concerns about your condition or care.
Care AgreementYou have the right to help plan your care. Learn about your health condition and how it may be treated. Discuss treatment options with your healthcare providers to decide what care you want to receive. You always have the right to refuse treatment. The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.
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