Taking Charge of Your Epilepsy

Although epilepsy affects many areas of life, it is first of all a medical condition. It's important to find a doctor in whom you have confidence and with whom you feel comfortable.

Although your doctor is the person who prescribes your medicine and gives you medical advice, you are the one with the most influence over how your epilepsy is managed. Your doctor makes recommendations to help you achieve seizure control with a minimum of side effects. You decide whether or not to incorporate these into your daily life.

For example, only you can make the medicine more likely to work for you. You do this by taking it as your doctor prescribes without missing doses.

Only you can track seizures and side effects as they happen. Only you can give accurate feedback to your doctor so changes in treatment can be made.

Sometimes people feel they're going to disappoint or upset their health care providers by admitting that they're having seizures. There may be concerns about being given more or different medications. Or people may feel that, even with seizures, they're getting along fine. Whatever the reason, the unfortunate result is that if you don't provide all the facts, your doctor will think the treatment is working, while you're probably putting up with more seizures than you have to.

Tell the doctor about side effects. Tell him or her if you feel different or less well than you did before starting the medicine. Don't feel that being tired, slowed down, or drowsy is a price that has to be paid for seizure control.

People react differently to seizure medicines, and your doctor wants to know if you're having these or any other physical or mental changes as a result of the treatment.

Being on more than one medication adds to the possibility of side effects, and may not completely control seizures either. That's why doctors try whenever possible to control seizures with one type of medicine. If you're taking more than that, and you're either still having seizures or you feel slowed down by the treatment, talk to your doctor about it. Ask whether he or she thinks treatment with fewer drugs or a different medication altogether might work for you. Ask about new drugs, and whether they might be helpful for you.

Sometimes a person with epilepsy finds himself or herself in the difficult position of having to choose between the sleepiness produced by large doses of medicine and having more seizures if the dosage is lowered. If there is no alternative, people who prefer greater alertness in exchange for less effective seizure control should explain to their doctors how they feel. It is also important to ask about whether other treatments, like surgery or vagus nerve stimulation (VNS), might be right for you.