Talking to Your Doctor

I've heard about the "team approach" between doctors and patients. What does that mean?

Treating epilepsy involves many different people. The team may include your doctor, nurse, psychologist or social worker, and specialists such as a neurologist or an obstetrician/gynecologist. You may want to bring along a family member or friend to help describe your seizures or to take notes during visits to your doctor. Members of the team may change as your medical needs and your life situation changes.

What role do I play in the "team approach"?

Medical professionals know a lot about epilepsy and medications, but you know yourself better than anyone else. Decisions about how to treat your seizures should include your opinions and goals for the future. Other members of the team depend on you to share accurate information about how often you have seizures, when you take your medications, any medication side effects and how epilepsy is affecting you and other family members.

It may be difficult to discuss personal issues such as sexuality or feelings of depression, but it is up to you to communicate clearly with other team members so they have all the information they need to work with you to develop the best treatment plan for you.

Should I see a specialist or a primary care physician for my epilepsy?

Many general physicians and internists treat epilepsy. However, if seizures seem difficult to control or if there are questions about which medication is appropriate and tolerated, it may be helpful to see a neurologist. A neurologist is a physician who has special training and experience with brain disorders, including epilepsy.

Depending on your individual needs, there are other specialists who can be consulted. A neurologist who specializes in seizures is called an epileptologist. A neuroendocrine specialist is a neurologist with training in hormone disorders and their effect on brain function. These physicians are often found in medical centers with programs devoted to epilepsy treatment, called Comprehensive Epilepsy Centers.

Many insurance plans require a physician referral to see a specialist. Talk to your primary physician if you think you want to consider getting a second opinion from a neurologist or other specialist. Most doctors are willing to set up a consult with another physician.

I have a lot of questions about epilepsy and my treatment options. How can I prepare for my doctor's appointment so that we get everything covered?

It's a good idea to plan in advance for your doctor appointments. Write a list of questions ahead of time as you think of them, and have them ready to ask at the appointment. Some physicians appreciate having your questions to review before the appointment, so you can use your time together efficiently.

It is helpful to keep a written record or calendar of your seizures and other important details like medication side effects. If a woman's menstrual cycle seems related to your seizures, she should include this information.

If regular visits with your physician seem short, and taken up with medical details like seizure control and medication issues, ask in advance for a longer time to be scheduled to deal with other issues that are important to you. If necessary, ask for a separate appointment to discuss your questions and concerns. Often the nurse who works with your doctor will have additional time to talk with you, at the time of your appointment or by phone.

You can get information about epilepsy from other sources as well. Your physician or nurse, or your local Epilepsy Foundation may have written materials that will be helpful. Counselors or psychologists can help you with the social and emotional aspects of living with epilepsy.

Sometimes I leave the doctor's office and forget what was said. How can I be sure I remember all the important details?

It may help to write down specific details such as medication changes, but it is hard to focus on the conversation if you try to write everything. Perhaps you can take a friend or family member with you who will take notes and go over the answers after the appointment. Or you may want to tape the visit with your doctor or nurse and listen to it later. Don't hesitate to call back after the appointment and ask your doctor or nurse for more details, if you feel confused about some aspect of your treatment plan.

I still have seizures even though I'm taking my medicine exactly as my doctor ordered. Do I need another doctor?

The ideal goal in treatment of epilepsy is no seizures, no side effects. Some may attain this goal quickly while others will take longer. Some people may not reach this goal with our current treatment options. Having seizures is not "failing," for either you or your doctor. It means your team has to continue to work together to identify the problem and try another treatment approach. Perhaps you need more medication or a different dosage schedule, or you may even need another medication altogether. If none of these approaches work, you may want to ask about surgical treatment or vagus nerve stimulation therapy for your epilepsy.

I'm frustrated because the dose of medication that controls my seizures gives me side effects. Sometimes I even skip a dose because I hate the side effects. What can I do?

It is very important to be honest with your physician about your medication schedule, and to share your concern about the side effects. Accurate reporting about seizures and side effects will help you and your doctor make decisions together about a treatment plan that works for you. There are many good medicines for epilepsy and if you don't tolerate one, you and your doctor can try another to see if it works better.

I've tried hard, but my doctor doesn't listen to my concerns. What should I do?

Many people report this. If your questions or concerns don't get answered in a way that is helpful to you, ask them again. Be clear and specific about your concerns. Give your doctor a chance to respond but if it doesn't work, don't hesitate to ask for a second opinion or to find another health care professional to work with you. The Epilepsy Foundation can give you a list of physicians in your area who specialize in the care of people who have seizures. If you need this kind of information, contact our Answer Place staff. 

I've read about alternative therapies for epilepsy on the Internet, such as biofeedback or special diets or herbs. Should I try one of those?

There is a lot of information available today about alternative therapies for seizure disorders. Since there is much about epilepsy that no one completely understands yet, some of these therapies may turn out to be useful, but it is wise to be cautious about advice from an anonymous source. While some of the suggestions may be harmless, other alternative treatments might interfere with the action of your seizure medications or have undesirable side effects.

The best choice is to talk with your doctor about trying a new treatment approach. He or she may have additional information that can help you decide about the usefulness and the safety of an alternative therapy.

I am moving out of state soon. What is the best way for me to find a new doctor?

Start with your current physician, who may be able to recommend a doctor in that area, either from personal knowledge or a medical directory. The medical society in your new location will often have a list of local physicians and specialists, and the Epilepsy Foundation can provide a list of doctors who specialize in the care of people who have seizures. Contact our Answer Place staff  for more information.

It will be helpful to take a set of medical records with you, or have them transferred to your new physician, so that the details of your medical history are clear. If your records are extensive, try to give your current doctor's staff advance notice so they have ample time to copy the records for you.

Make an appointment with your new physician before you move or as soon as possible after moving, so that you can get to know each other before there is a problem or a crisis.