Epilepsy can be a complex disorder.

Help Your Loved One Take Control

Know the Caregiving Basics

Recognize what’s needed. Just as the right treatment can have a tremendous impact, so can the right kind of support. Developing the basic skills you need as a support giver can make a critical difference in the life of the person you care for. A few basic skills are listed below:

  • Understand how much help—and what kind—is needed. Have discussions, take notes, make a chart, do research—find out exactly what is needed, and make sure you can do your part.
  • Understand what kinds of help you can—and can’t—provide. Know the difference between what you can do, what a healthcare professional must do, and what is best done by the person with epilepsy.
  • Know what to do in an emergency. A seizure is not always an emergency. However, if injuries have occurred during a seizure, if a seizure continues for more than 5 minutes or happens repeatedly, you may need emergency assistance. Keep emergency telephone numbers handy. Ask the healthcare professional what types of seizures have occurred, which other types of seizures may occur in the future, and what to do in a likely emergency.
  • Help to keep the focus on the goal. If things get difficult, help your loved one focus on the goal—a healthy, independent life, with seizures as controlled as possible and any limitations due to epilepsy overcome or kept to a minimum. Where possible, concentrate on the practical steps that can help you both get there.
  • Understand and support the treatment plan. Help make taking medicine exactly as prescribed by your healthcare professional a part of the daily routine. Missing a dose could cause a breakthrough seizure. Be sure the healthcare professional is consulted before any changes are made or if unexpected side effects occur.
  • Understand what side effects may appear. The medicine that works the best for an individual patient is not always the one with the fewest side effects. Because the person you care for will need to live with whatever side effects happen to appear—at least for a while—it is important to know what to expect. Your healthcare professional should be able to help.
  • Know the limits; encourage appropriate precautions. When it comes to activities such as skiing, skateboarding, or scuba diving, it’s important for your loved one to know what limits are appropriate. Make sure her or his healthcare professional is part of the decision process.
  • Know the risks of alcohol. Alcohol can lower the threshold at which seizures occur and may increase the side effects of antiepileptic drugs.
  • Encourage basic health. Your loved one can improve the odds of controlling seizures by getting enough sleep on a regular basis and avoiding unnecessary stress.
  • Communicate. Talk with the person you care for regularly. Encourage an open discussion of her or his feelings and concerns. Look for practical solutions. If you are a parent or other primary caregiver, speak with your loved one’s healthcare professional to get your questions answered. Keep asking until you know what you need to know.
  • Learn as much as you can. Get in touch with other support givers. Keep up with news from epilepsy organizations. Ask your loved one’s healthcare professional to recommend groups and newsletters. Keep yourself well-informed, and help your loved one take an active role in her or his own care. And—if your healthcare professional decides TOPAMAX is right for your loved one—be sure to join Everyday Essentials™, the FREE support program for people with epilepsy and those who care for them.

Find the Right Approach

Find out how you can help with treatment. From helping to keep track of how often seizures occur to monitoring dosages and any side effects, you may have an important role to play in keeping treatment on track and making sure it is as effective as possible.

Find out how you can help with practical issues. Solving practical problems—anything from transportation issues to having a plan in place for emergencies—can go a long way toward putting the person you care for in control.

Find out what kinds of help you may need from others. Even if you are the primary support giver, you need not be the only one. Just as healthcare professionals help you and your loved one deal with the medical aspects of epilepsy, you needn’t be alone in dealing with the social, psychological, and practical aspects of the condition. Look into support groups in your area or at the national level, and get other friends and family members involved.

Line up substitute caregivers. Whether you are a parent or a peer, and whether your loved one’s condition is well-controlled or severe, the time will come when you will need someone to fill in. Whether it’s a neighbor to look in on the person you care for, a dependable sitter for your child with epilepsy, or even something more demanding, you should be prepared to take time off when YOU need it, or when something urgent comes up. If your options are limited, look into respite care. The more demanding your caregiving is, the more you yourself will need a regular break: Take one.

Keep Learning

Talk to people who’ve been there. Get in touch with others who support people with epilepsy, and find out what has worked for them. Online communities and local organizations are a good place to start.

Ask a healthcare professional. For more facts and information about epilepsy and its treatment, ask the healthcare professional to recommend publications. Many responsible organizations devoted to epilepsy have Web sites, newsletters, and other useful publications.

Get help. To read up on specific topics and concerns, visit the Epilepsy Foundation Web site at www.epilepsyfoundation.org.

For links to many other epilepsy resources, visit the Epilepsy Information Page of the National Institutes of Health’s National Institute of Neurological Disorders and Stroke (NIH/NINDS). Please see our Important Organizations and Resources page for more.


Access2wellness™ provides access to more than 1,000 free and discounted prescription medications for uninsured and underinsured individuals who qualify.

About TOPAMAX®

TOPAMAX® is approved as initial monotherapy in patients 2 years of age and older with partial-onset or primary generalized tonic-clonic seizures.

Safety and effectiveness in patients who were converted to monotherapy from a previous regimen of other anticonvulsant drugs have not been established in controlled trials.

TOPAMAX® is approved as add-on therapy for patients 2 years of age and older with primary generalized tonic-clonic seizures, partial-onset seizures, or seizures associated with Lennox-Gastaut syndrome.

Important Safety Information

Warnings and Precautions

TOPAMAX ® may cause eye problems. Serious eye problems include: sudden decrease in vision with or without eye pain and redness; blockage of fluid in the eye causing increased pressure in the eye (secondary angle closure glaucoma). These eye problems can lead to permanent loss of vision if not treated. You should call your healthcare professional right away if you have any new eye symptoms.

TOPAMAX ® may cause decreased sweating and increased body temperature (fever). People, especially children, should be watched for signs of decreased sweating and fever, especially in hot temperatures. Some people may need to be hospitalized for this condition. Call your healthcare provider right away if you have a fever or decreased sweating.

TOPAMAX ® can increase the level of acid in your blood (metabolic acidosis). If left untreated, metabolic acidosis can cause brittle or soft bones (osteoporosis, osteomalacia, osteopenia), kidney stones, can slow the rate of growth in children, and may possibly harm your baby if you are pregnant. Metabolic acidosis can happen with or without symptoms. Sometimes people with metabolic acidosis will: feel tired, not feel hungry (loss of appetite), feel changes in heartbeat, or have trouble thinking clearly. Your healthcare provider should do a blood test to measure the level of acid in your blood before and during your treatment with TOPAMAX ®. If you are pregnant, you should talk to your healthcare provider about whether you have metabolic acidosis.

Like other antiepileptic drugs, TOPAMAX ® may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Pay attention to any changes and call your doctor right away if you have any of these symptoms, especially if they are new, worse, or worry you: thoughts about suicide or dying, attempts to commit suicide, new or worse depression, new or worse anxiety, feeling agitated or restless, panic attacks, trouble sleeping (insomnia), new or worse irritability, acting aggressive, being angry or violent, acting on dangerous impulses, an extreme increase in activity and talking (mania), or other unusual changes in behavior or mood.

TOPAMAX ® may affect how you think, and cause confusion, problems with concentration, attention, memory, or speech, depression or mood problems, tiredness, and sleepiness.
Do not stop taking TOPAMAX ® without first talking to your doctor. Stopping TOPAMAX ® suddenly can cause serious problems.

If you take TOPAMAX ® during pregnancy, your baby has a higher risk for birth defects called cleft lip and cleft palate. These defects can begin early in pregnancy, even before you know you are pregnant. There may be other medicines to treat your condition that have a lower chance of birth defects. All women of childbearing age should talk to their healthcare providers about using other possible treatments instead of TOPAMAX ®. If the decision is made to use TOPAMAX ®, you should use effective birth control (contraception) unless you are planning to become pregnant. Tell your healthcare provider right away if you become pregnant while taking TOPAMAX ®. You and your healthcare provider should decide if you will continue to take TOPAMAX ® while you are pregnant. Metabolic acidosis may have harmful effects on your baby. Talk to your healthcare provider if TOPAMAX ® has caused metabolic acidosis during your pregnancy. If you become pregnant while taking TOPAMAX ®, talk to your healthcare provider about registering with the North American Antiepileptic Drug Pregnancy Registry. You can enroll in this registry by calling 1-888-233-2334. The purpose of this registry is to collect information about the safety of antiepileptic drugs during pregnancy.

TOPAMAX ® may cause high blood ammonia levels. High ammonia in the blood can affect your mental activities, slow your alertness, make you feel tired, or cause vomiting.

Taking TOPAMAX ® when you are also taking valproic acid can cause a drop in body temperature (hypothermia) to less than 95ºF, feeling tired, confusion, or coma.

Adverse Reactions

As monotherapy, the most common side effects of TOPAMAX ® (in the 400 mg/day group and at a higher rate, ≥ 5%, than the 50 mg/day group) in adults were tingling in arms and legs, weight decrease, loss of appetite, sleepiness, and difficulty with memory; and in children, fever, weight decrease, mood problems, cognitive problems, infection, flushing, and tingling in arms and legs.

In combination with other antiepileptic drugs (AEDs), the most common side effects of TOPAMAX ® in adults (200 to 400 mg/day) were sleepiness, dizziness, loss of muscle coordination, speech disorders and related problems, psychomotor slowing, abnormal vision, difficulty with memory, tingling in arms and legs, and double vision; and in children (5 to 9 mg/kg/day), fatigue, sleepiness, loss of appetite, nervousness, difficulty with concentration/attention, difficulty with memory, aggressive reaction, and weight decrease.

Tell your doctor about other medications that you are taking. Report any side effect that bothers you or that does not go away.

These are not all the possible side effects of TOPAMAX ®. For more information, ask your healthcare professional or pharmacist.

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.

Please see full US Prescribing Information and Medication Guide.

© Janssen Pharmaceuticals, Inc. 1999-2012. All rights reserved.

Your use of the information on this site is subject to the terms of our Legal Statement. Please see our Privacy Policy.

This site is published by Janssen Pharmaceuticals, Inc., which is solely responsible for its contents.

Capitalized product names are trademarks of Janssen Pharmaceuticals, Inc.

This information is intended for use by our customers, patients and healthcare professionals in the United States only. Janssen Pharmaceuticals, Inc. recognizes that the Internet is a global communications medium; however, laws, regulatory requirements and medical practices for pharmaceutical products vary from country to country. The prescribing information included here may not be appropriate for use outside the United States.

This site was last modified on: Feb 13 2012 at 11:05:00 EST