Caregiving

As you may already know, whether you're caring for a child, caring for a loved one, or caring for yourself, it's important to look beyond managing seizures and consider overall physical and emotional health. For the person with epilepsy, this includes:

  • Taking medicines as prescribed
  • Avoiding triggers
  • Practicing self-care

How to support your child's treatment

  • Educate yourself about epilepsy and its treatment
  • Take note of when and in what circumstances your child's seizures happen. Keeping a record may help you and your child's doctor determine if there are triggers that can be avoided
  • Work with your child's doctor to create a Seizure Response Plan. Simple forms are available on the Epilepsy Foundation website (epilepsy.com)
  • Set up a routine that is easy to follow
  • See that your child gets enough sleep
  • Help your child take seizure medication exactly as prescribed. Missing doses can have negative effects on overall health
  • Write questions down and bring them to doctor appointments
  • Encourage your child to participate in appropriate school, social, and leisure activities
  • Accompany your child to places they need to go
  • Help make your home safe. Supervise your child's bathing, showering, or swimming
  • Help your child stay healthy, eat well, and lower stress

What you can do when a seizure happens

  • If your child has a Seizure Response Plan, follow it
  • Stay close by
  • Remain calm
  • Watch the clock to see how long the seizure lasts. If it's more than 5 minutes, dial 911
  • Clear items from around your child to keep them safe
  • Try to make your child comfortable
  • Don't try to hold your child down or keep them still
  • Never put anything in your child's mouth during a seizure
  • Check for normal breathing
  • Don't give your child anything to eat or drink until the seizure is over
  • Note what happened before the seizure to help identify any triggers

When you should call for emergency help

Don't panic! But do call 911 if:

  • The seizure lasts longer than 5 minutes
  • Seizures happen one after another
  • Breathing is not normal
  • Your child is in water when the seizure starts
  • If the seizure causes your child to get hurt
  • If your child asks you to call for help

What to discuss with your child's doctor

  • What type of seizures is my loved one most likely to have?
  • How can I know if they are having a convulsive (secondarily generalized or primary generalized tonic-clonic) seizure or a partial-onset seizure?
  • How can we work together to provide care and support?
  • What type of first aid should I have on hand?
  • What is the best way to track seizure triggers so I can be more prepared?

Some people take medication, but still have seizures. If that is happening, let the doctor know. Better seizure control may be possible.

Many medications treat seizures. The doctor may decide that taking FYCOMPA® could be a good option. You can start by working with your child to complete these questions.

Ask the doctor about side effects—and take notes. Medications for seizures, including FYCOMPA, may cause suicidal thoughts or actions. Pay attention to any changes, such as sudden changes in mood, behaviors, thoughts, or feelings. Call the doctor between visits if you see any of these signs. Learn more about possible side effects of FYCOMPA.

Remember to care for yourself

To take good care of your child, you also need to take care of yourself. Having a healthy mind and body may give you the strength and focus you need to support your child, and be the best caregiver you can be. Things to keep in mind:

  • Don't take on too much at once
  • Don't go it alone—reach out to others for support. When people offer help, accept!
  • Stay healthy with exercise, the right food, and enough sleep. It's easy to forget about yourself when you have someone else to care for
  • Avoid stressful situations. There are some things you cannot control. Try and stay positive and focused on what you can control
  • Treat yourself. Take a moment to do something for yourself every day
  • Take time for yourself without feeling guilty about it

How to support your loved one's treatment

  • Educate yourself about epilepsy and its treatment
  • Ask your loved one what you can do to help
  • Work with your loved one and their doctor to create a Seizure Response Plan. Your loved one can share it with people who might be able to help, and carry a copy in case it's needed. Simple forms are available on the Epilepsy Foundation website (epilepsy.com)
  • Take note of when and in what circumstances the seizures happen. Keeping a record may help you and your loved one's doctor determine if there are triggers that can be avoided
  • Encourage your loved one to set up a practical routine that helps them take their seizure medication exactly as prescribed; missing doses can have negative effects on overall health
  • Write questions down, bring them to doctor appointments, and help your loved one get them answered
  • Participate in social and leisure activities with your loved one
  • Accompany your loved one to places they need to go
  • Help make your home safe in case a seizure happens
  • Help your loved one stay healthy, eat well, and lower stress

What you can do when a seizure happens

  • If your loved one has a Seizure Response Plan, follow it
  • Stay close by
  • Remain calm
  • Watch the clock to see how long the seizure lasts. If it's more than 5 minutes, dial 911
  • Clear items from around your loved one to keep them safe
  • Try to make your loved one comfortable
  • Don't try to hold your loved one down or keep them still
  • Never put anything in your loved one's mouth during a seizure
  • Check for normal breathing
  • Don't give your loved one anything to eat or drink until the seizure is over
  • Note what happened before the seizure to help identify any triggers

When you should call for emergency help

Don't panic! But do call 911 if:

  • The seizure lasts longer than 5 minutes
  • Seizures happen one after another
  • Breathing is not normal
  • Your loved one is in water when the seizure starts
  • If the seizure causes your loved one to get hurt
  • If your loved one asks you to call for help

How to help with doctor visits

Ask questions that might help you take care of your loved one, such as:

  • How should someone with epilepsy explain their seizures to others?
  • How can I help make sure that their home, school, or work space is safe?
  • Is it okay for them to drive?
  • What precautions should they take if they live alone?

Some people take medication, but still have seizures. If that is happening, encourage your family member or friend with epilepsy to let the doctor know. Better seizure control may be possible.

Many medications treat seizures. The doctor may decide that taking FYCOMPA® could be a good option. You can start by suggesting that your loved one complete these questions.

Ask the doctor about side effects—and take notes. Medications for seizures, including FYCOMPA, may cause suicidal thoughts or actions. Pay attention to any changes, such as sudden changes in mood, behaviors, thoughts, or feelings. Call the doctor between visits if you see any of these signs. Learn more about possible side effects of FYCOMPA.

Remember to care for yourself

To take good care of your loved one, you also need to take care of yourself. Having a healthy mind and body may give you the strength and focus you need to support your loved one, and be the best caregiver you can be.
Things to keep in mind:

  • Don't take on too much at once
  • Don't go it alone—reach out to others for support. When people offer help, accept!
  • Stay healthy with exercise, the right food, and enough sleep. It's easy to forget about yourself when you have someone else to care for
  • Avoid stressful situations. There are some things you cannot control. Try and stay positive and focused on what you can control
  • Treat yourself. Take a moment to do something for yourself every day
  • We all need respite. Take time for yourself without feeling guilty about it

How to support your own treatment

  • If possible, take note of when and in what circumstances the seizures have happened. Keeping a record may help your doctor determine if you have triggers—and, if so, how you can avoid them
  • Work with your doctor to create a Seizure Response Plan you can share with people whose help you might need. You can carry a copy with you in case you need it. Simple forms are available on the Epilepsy Foundation website (epilepsy.com)
  • Set up a practical routine that helps you take your seizure medication exactly as prescribed. Missing doses can have negative effects on overall health
  • Write your questions down, bring them to doctor appointments, and get them answered
  • Participate in social and leisure activities with friends and family
  • Ask for help when you need it
  • Make your home as safe as you can in case a seizure happens
  • Stay healthy, eat well, and lower your stress levels

What you can do if you feel a seizure coming on

  • If you are alone, let someone know—they may be able to help
  • If you are in public, ask for assistance. Share your Seizure Response Plan to let them know what steps to take and what to watch out for
  • If you are out with a companion, share your Seizure Response Plan so they know what steps to take and what to watch out for

Let family members and friends know what to do if you have a seizure

Let them know they should:

  • Stay close by
  • Remain calm
  • Watch the clock to see how long the seizure lasts. If it's more than 5 minutes, dial 911
  • Clear items from around you to keep you safe
  • Try to make you comfortable
  • Don't try to hold you down or keep you still
  • Never put anything in your mouth during a seizure
  • Check for normal breathing
  • Don't give you anything to eat or drink until the seizure is over
  • Note what happened before the seizure to help identify any triggers

Let family members and friends know when to call for emergency help

Let them know that a seizure is not necessarily an emergency, but to call 911 if:

  • The seizure lasts longer than 5 minutes
  • Seizures happen one after another
  • Your breathing is not normal
  • You are in water when the seizure starts
  • If the seizure causes you to get hurt
  • If you ask them to call for help

How to get more out of your doctor visits

Ask questions that might help you take care of yourself, such as:

  • How should I explain my condition to others?
  • How can I make sure that my home, school, or work space is safe?
  • Is it okay for me to drive?
  • What precautions should I take if I live alone?

Some people take medication, but still have seizures. If that is happening to you, let your doctor know. Better seizure control may be possible.

Many medications treat seizures. Your doctor may decide that taking FYCOMPA® could be a good option. You can start by completing these questions.

Ask the doctor about side effects—and take notes. Medications for seizures, including FYCOMPA, may cause suicidal thoughts or actions. Pay attention to any changes, such as sudden changes in mood, behaviors, thoughts, or feelings. Call the doctor between visits if you notice any of these signs. Learn more about possible side effects of FYCOMPA.

Above all: remember to care for your own physical and emotional wellbeing

To take good care of yourself, you need to be as healthy as you can be in mind and body. Things to keep in mind:

  • Don't take on too much at once
  • Don't go it alone—reach out to others for support. When people offer help, accept!
  • Stay healthy with exercise, the right food, and enough sleep
  • Avoid stressful situations. There are some things you cannot control. Try and stay positive and focused on what you can control
  • Treat yourself. Take a moment to do something for yourself every day
  • We all need respite. Take time for yourself without feeling guilty about it

Reach out! You are not alone

Millions of people in the United States and worldwide have epilepsy.

  • 3 million adults living with epilepsy in the US
  • 65 million people worldwide living with epilepsy
  • 470,000 children living with epilepsy in the US

Why planning ahead is so important

When you have epilepsy, seizures— called breakthrough seizures—can happen even if you are taking medicine. Breakthrough seizures can occur when:

  • Your medicine is no longer working for you
  • A dose is missed and your medicine does not stay in the body for a long time

Life is hectic and we're only human, so missed doses can happen. It's important to plan ahead as best you can and take your medicine as prescribed to try to avoid experiencing a seizure while on treatment.

Some tips to stay healthy

Finding the right treatment option for your epilepsy is important, but it's just one piece of the puzzle. Staying committed to your health can also help. Here's a good place to begin:

Everyone needs time to wind down and relax. Taking it easy is important.

Drinking alcohol—and skipping doses of your medication to do so—can be dangerous to your health.

Think about what you're putting into your body. Are you maintaining a well-balanced diet? Consider the many benefits of eating healthy.

Stress can come on quickly and have damaging effects on your brain and body. Think of ways to unwind and focus on what's important to you.

Indication and Important Safety Information

What is FYCOMPA (perampanel)?

FYCOMPA is a prescription medicine used alone or with other medicines to treat partial-onset seizures with or without secondarily generalized seizures in people with epilepsy aged 4 and older and with other medicines to treat primary generalized tonic-clonic seizures in people with epilepsy aged 12 and older.

Important Safety Information

FYCOMPA may cause mental (psychiatric) problems, including: new or worse aggressive behavior (including homicidal behavior), hostility, anger, anxiety, or irritability; being suspicious or distrustful (believing things that are not true); seeing objects or hearing things that are not there; confusion; difficulty with memory; other unusual or extreme changes in behavior or mood. Tell your healthcare provider right away if you have any new or worsening mental problems while taking FYCOMPA.

Like other antiepileptic drugs, FYCOMPA may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your healthcare provider right away if you have any of these symptoms, especially if they are new, worse, or worry you:
thoughts about suicide or dying; new or worse depression; feeling agitated or restless; trouble sleeping (insomnia); acting aggressive; being angry, or violent; an extreme increase in activity and talking (mania); attempt to commit suicide; new or worse anxiety; panic attacks; new or worse irritability; acting on dangerous impulses; other unusual changes in behavior or mood. Suicidal thoughts or actions can be caused by things other than medicines. If you have suicidal thoughts or actions, your healthcare provider may check for other causes.

Pay attention to any changes especially sudden changes in mood, behaviors, thoughts, or feelings and keep all follow-up visits with your healthcare provider as scheduled. Call your healthcare provider between visits as needed, especially if you are worried about symptoms.

Do not stop FYCOMPA without first talking with your healthcare provider. Stopping suddenly can cause serious problems and can cause you to have seizures more often.

Before taking FYCOMPA, tell your healthcare provider about all of your medical conditions, including if you: have or have had depression, mood problems, aggressive or hostile behavior (for example, homicidal behavior), suicidal thoughts or behavior, or other psychiatric problems; have liver or kidney problems; drink alcohol; have abused prescription medicines, street drugs, or alcohol in the past; are pregnant or plan to become pregnant. It is not known if FYCOMPA will harm your unborn baby. If you become pregnant while taking FYCOMPA, talk to your healthcare provider about registering with the North American Antiepileptic Drug Pregnancy Registry (1-888-233-2334); are breastfeeding or plan to breastfeed. Talk to your healthcare provider about the best way to feed your baby if you take FYCOMPA and to decide if you will take FYCOMPA or breastfeed. You should not do both.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Taking FYCOMPA with certain other medicines can cause side effects or reduce either drug’s benefit. These medicines include: birth control, carbamazepine, phenytoin, oxcarbazepine, rifampin, and St. John’s Wort.

What should I avoid while taking FYCOMPA?
Do not drive, operate heavy machinery, or do other dangerous activities until you know how FYCOMPA affects you. FYCOMPA may make you dizzy, sleepy, or tired. Do not drink alcohol or take other medicines that make you sleepy or dizzy until you talk to your healthcare provider. FYCOMPA taken with alcohol or medicines that cause sleepiness or dizziness may make your sleepiness or dizziness worse. FYCOMPA when taken with alcohol may also make your mood worse, increase anger, confusion, and depression.

FYCOMPA may cause other serious side effects, including: Dizziness, vertigo (sense of spinning), and problems walking normally. You may have problems walking normally if you are unsteady because you feel dizzy. These symptoms can increase when your dose of FYCOMPA is increased. Your risk of feeling dizzy and having problems walking normally may be higher if you are elderly; Sleepiness and tiredness; Increased risk of falls. Taking FYCOMPA can increase your chance of falling. These falls can cause serious injuries. Your risk of falling may be higher if you are elderly; A serious allergic reaction that may affect your skin or other parts of your body such as your liver, kidneys, heart, or blood cells. This allergic reaction can be life-threatening and can cause death. Call your healthcare provider right away if you have: a skin rash, hives; fever or swollen glands that do not go away; swelling of your face; shortness of breath; swelling of the legs; yellowing of the skin or whites of the eyes; or dark urine

The most common side effects of FYCOMPA include: dizziness; sleepiness; tiredness; irritability; falls; nausea and vomiting; weight gain; vertigo (sense of spinning); problems walking normally; problems with muscle coordination; headache; bruising; abdominal pain; anxiety

FYCOMPA is a controlled substance (CIII) because it can be abused or lead to drug dependence. Keep FYCOMPA in a safe place to protect it from theft and never give it to anyone else because it may harm them. Selling or giving away FYCOMPA is against the law.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Prescribing Information and Medication Guide for FYCOMPA.