Managing Continued Seizures
People who have seizures that continue despite treatment will be faced with different challenges. 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 your doctors understand what is going on. Then you, your doctors and other members of your health care team can work together to help you control 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. For example, you'll also want to make sure you know how to manage your medicines, lifestyle, safety, and stress.
- Seizures and their treatment may also affect your physical health or other conditions and you'll need to understand how to prevent complications.
- Beyond the seizures, there are the potential social factors that affect your quality of life. Ask for help understanding these and finding the right resources – such as your local Epilepsy Foundation.
- Managing 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 assume that this is the best they can achieve. While not everyone will get complete seizure control, you don't know until you try! Have the doctor write down why he or she thinks you are still having seizures and what you can do.
- Make sure that you've gotten the basics of care. Look at the checklists for quality care 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 to take 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.
- You may need to be referred to an epilepsy center for more specialized testing.
- 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.
- 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 learn 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. Are you having any signs of mood or behavior problems?
- Get help to manage stress as best as you can. This 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 (put in link to find an affiliate) and see if there is a local affiliate or support group in your area. If you live outside of the United States, visit International Bureau for Epilepsy to find groups in your area.
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