Next Steps: Taking Action

There's no question that women who have seizures or any health condition requiring the use of anticonvulsants face difficult choices in balancing the therapeutic value of these drugs with the very real possibility of negative effects on key aspects of their lives. The Epilepsy Foundation believes that, in order to maximize their chances of positive outcomes, women need to educate themselves and to become effective self-advocates in their own treatment. To empower women and to promote a more successful partnership between women and their health care providers, the Foundation calls women to action and urges them to take the following steps:

1. Work with your doctor to find the medication that works best for you, balancing your need to prevent seizures, to prevent pain, or to maintain your mental health against short or long term risks associated with the drug. Find out as much as you can about the medication you are taking. If you have questions, be sure to check them out.

2. Talk with your doctor about specific risks and benefits, both short and long term. Ask about effects on hormonal birth control and whether you will need a stronger birth control prescription when taking a specific drug. If you have epilepsy, ask about risks and benefits of all the medications known to be effective for your specific seizure type.

3. If you are planning a pregnancy, talk with your healthcare provider before you conceive. Review your treatment and the drug you are currently taking. Do you still need an anticonvulsant drug? Do you want to try a period of withdrawal? Is it safe to do so? Ask your physician to put you on the fewest number of drugs possible (preferably just one) to treat your seizures or other central nervous system disorder during pregnancy, at the lowest possible dose. Be aware that even with some increased risk, the overwhelming majority of women (85-90 percent or more) who become pregnant while taking anticonvulsants deliver healthy babies.

4. Take a multivitamin containing folic acid before and after conception as a way of protecting against spina bifida in your baby regardless of whether you are taking any medication or not. Both carbamazepine and valproate are known to increase the risk of this serious condition. Ask your doctor if you should take a higher than the standard daily dose (0.4 mg) of folic acid if you are taking either of these medications.

5. If you become pregnant enroll in the North American Pregnancy Registry ((888) 233-2334) as soon as your pregnancy is confirmed. You will be helping other women by helping researchers identify the safest anticonvulsant drugs during pregnancy. The North American Registry (previously called the AED Pregnancy Registry) enrolls women who are taking these medications for any reason, including other central nervous system disorders and pain. There is no charge, and all information is held in confidence. Check it out at (www.aedpregnancyregistry.org).

6. Make sure your doctor monitors your anticonvulsant blood levels during pregnancy and changes your dose as needed to prevent seizures or worsening of your condition. During pregnancy, women may need higher doses of the medication to retain its effectiveness, because drug levels typically fall during pregnancy. After the baby is delivered, doses are reduced.

7. Do NOT reduce or stop taking your anticonvulsant medication for any reason without advice from your doctor. Stopping an anticonvulsant may not only make your condition much worse but, in the case of epilepsy, runs the risk of seizures.

8. Ask about ways to prevent long term effects. If you are a young woman on a drug that affects bone health, ask your healthcare provider about having periodic bone scans to see what your bone health status is. Ask about calcium and vitamin D supplements and whether you should be on any prescription medicine to protect bone health.

9. If weight gain is a problem, ask about calorie reduction or other diet plans, medication options, and lifestyle changes that might help.

10. Stay on top of emerging information about anticonvulsant drugs. Visit the Epilepsy Foundation's website and the websites of the American Academy of Neurology, the North American Pregnancy Registry and the American Epilepsy Society.