Print out this handy checklist (PDF)
People who have seizures that persist or continue despite treatment will be faced with different challenges that can affect many aspects of their lives. Here is where the patient role as advocate becomes crucial. You (and your family in some situations) must take a central role in your care and make sure that your doctors understand what is going on. Then you and your doctors and other members of your health care team can work together to help you control your seizures and achieve your goals. If you're not getting 'success', meaning that you are still having seizures, side effects or just not making progress on your goals, then it's time to ask for more help.
Keep in mind that managing seizures is more than just controlling seizures. You'll also want to make sure you know how to manage your medicines, lifestyle, safety, and stress for example. Seizures and their treatment may also affect your physical health or other conditions and you'll need to understand how to prevent complications. You'll need to find and manage lots of information and figure out how it relates to you. Beyond seizures are the social factors that affect your quality of life and at some point you'll want help understanding these and how to find the right resources.
Managing continued or uncontrolled seizures will start with your neurologist, but you may also need other health care specialists as well as professionals or resources in your community.
Tips for managing continued seizures:
- Start by asking why you are still having seizures. Sometimes people erroneously assume that this is the best they can achieve and don't know any different unless they ask. While not everyone will get complete seizure control, you don't know until you try! Have the doctor right down why he or she thinks you are still having seizures and what you can do.
- Make sure that you've received the basics of care. Look at the checklists for quality care in each section and make sure you haven't missed any steps.
- Track your seizures – what happens, how often and if there are any specific patterns or triggers that may occur at the time of seizures.
- Look at your lifestyle – are there factors that may be making seizures worse, and how are the seizures affecting your daily life?
- Ask your doctor about taking another look at the diagnosis. If seizures have changed, it's important to make sure which symptoms are seizures, what may be related to medicines or to other problems. Testing can also help the doctor know if other treatment options may be appropriate. This may require a referral to an epilepsy center for more specialized testing.
- If more detailed testing is recommended, make sure you understand what is recommended, why and what to expect.
- Talk to your doctor about plans for managing seizures and preventing seizure emergencies. If you haven't done this yet, develop a seizure preparedness plan.
- Meet with an epilepsy nurse to help you prepare for the testing and make sure you have a plan in place to manage breakthrough seizures. If medication changes are going to be made, make sure you plan enough time to have the testing done.
- Speak to an epilepsy nurse or other professional to better understand your seizures and what you can do to cope with the practical aspects of living with epilepsy.
- See a social worker, psychologist or psychiatrist to see how you're coping with epilepsy and if any signs of mood or behavior problems are bothering you. Managing stress as best as you can may help your seizure control as well as your general well-being.
- Ask for a referral for neuropsychology testing to help you understand how seizures may be affecting your brain, and what your strengths or weaknesses are. This testing may help your team learn more about what treatments may help you, and can be used to help you in your work, school and other parts of your life.
- Visit the My.epilepsy.com Community to learn from others who have a special interest (and expertise) in living with epilepsy!
- Visit www.epilepsyfoundation.org and see if there is a local affiliate or support group in your area. If you live outside of the United States, visit http://www.ibe-epilepsy.org/ to find groups in your area.
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Topic Editor: Patricia O. Shafer, RN, MN. and Steven C. Schachter, MD
Last Reviewed: 7/28/08