Dare to go the distance

When to see an epilepsy specialist

  • Neurologists who specialize in epilepsy (epileptologists) have special training in diagnosing and treating epilepsy. They are most often found at comprehensive epilepsy centers; these centers have other types of experts in epilepsy too.
  • So if you are not responding to medicines in the first 1 year or with the first couple of drugs tried, it’s time to see an epilepsy specialist. The cause of the seizures doesn’t matter. If you have seizures due to a stroke or tumor, the stroke or tumor doctor may not be a specialist in treating seizures. You should still see an epilepsy specialist.
  • Other reasons to see an epilepsy specialist:
    • Side effects are bothering you.
    • The diagnosis is not clear. In the beginning of your epilepsy journey, you may have started medicines based on your history and what people saw when you had a seizure. When medicines don’t work, special testing can help you and your team know for sure if the events are caused by electrical discharges in the brain and if they are epilepsy.
    • To find out where seizures are coming from and see if other treatments like surgery or devices may help.
    • For dietary therapy specific to treating seizures.
    • Women who may be having hormonal associations with seizures or are considering pregnancy.
    • To explore genetic concerns and links that may affect treatment, associated problems, and long term outlook.
    • For people with new onset seizures and other medical problems that may be associated with or affected by epilepsy or its treatment.
    • When epilepsy is affecting your general health, work, school or daily life, then help from a wide range of experts is available.

Special Diagnostic Tests

  • When you first see an epilepsy specialist or visit an epilepsy center, past records will be reviewed and most likely other tests will be recommended.
  • Testing is done to confirm the diagnosis and learn more about your epilepsy. Is it epilepsy? Are other health problems affecting or contributing to the events and how should these be treated?
    • EEG telemetry (usually with video) is done to record you while a seizure is happening. This lets the team see what the event looks like and what is happening in the brain at the time.
    • A lot of other information can be found by looking at different types of brain scans or imaging, from neuropsychologist testing to see how the brain functions, and from learning about you, the person with epilepsy, and family.
  • If seizures are not epilepsy, then you should be referred to the right type of provider who can help. For example, if events are caused by a sleep disorder, a sleep specialist and more detailed sleep testing would be needed. If heart issues are suspected, you would be referred to a cardiologist or heart doctor. If emotional factors are part of the problem, referral to a mental health expert is needed. By getting the right diagnosis and specialist, you are more likely to get control of the seizures and events quicker and with the right treatment.
  • If seizures are epilepsy (caused by electrical activity in the brain), it’s important to find out what type of seizures and where they are arising in the brain. Knowing this information will help you and your team choose the right type of medicine or other treatments.

Seizure Medications

  • After learning more about you and your epilepsy, changes in seizure mediations may be recommended. These may be done slowly when you are at home. Other times, medicine changes are made in an inpatient epilepsy monitoring unit (called an EMU) when you are hospitalized for EEG testing or other reasons. Make sure you talk to an epilepsy doctor and nurse about what to expect on an EMU and with medicine changes. (Learn about safety in an EMU and after discharge from an EMU.)
  • For some people, trying a different medicine may be all that is needed. Other people will continue to have seizures. When this happens, an epilepsy expert will help you get the best control possible by trying a newer medicine that may work differently than others you’ve tried or a combination of medicines that may help different types of seizures and lessen the risk of side effects.
  • You may also have a chance to be part of a research study testing a new seizure medicine or treatment. These studies can offer you a chance to be part of finding a new treatment that will help others too.
  • After getting the best medicines for you, it’s time to ask, “What’s the next step in my journey? What else is available?”

Surgery for Epilepsy

  • Surgery may be an option for some people, depending on their type of epilepsy and where the seizures start in the brain. The most common type of epilepsy surgery (lobectomy or resection, most often in the temporal or frontal areas of the brain) removes the area where the seizures are beginning. This type of surgery offers the best chance of seizure control. Some people may be able to come off medicines eventually too.
  • Other types of surgery may be possible for people whose seizures involve more than one area of the brain. New surgery approaches are being developed too.
  • Epilepsy surgery is a process that should be considered only after you’ve had a lot of testing at an epilepsy center. People thinking about surgery should also meet with an epilepsy nurse, social worker, psychologist, and psychiatrist to learn more about your options and for your team to know more about you and to help treat all of you, not just the seizures.
  • Surgery is also not an endpoint. If you’re considering it, make sure you develop plans for after surgery. There will be a period of recovery and you’ll need to learn ways of coping with life after surgery. Your next journey may be learning to live without seizures; while this is a fantastic goal, it involves changes for you and your family that you’ll want help with. If you still have seizures after surgery, don’t give up. Your journey may take a different direction.

Devices for Epilepsy

  • When surgery is not an option, certain devices may help control seizures. Right now, VNS Therapy or vagus nerve stimulation and RNS Therapy or responsive neurostimulation are approved therapies to treat intractable seizures or seizures that don’t respond to drug therapy.
  • Other approaches are being tested to control seizure, to predict seizures, and to alert people and help keep them safe.

Dietary Therapy for Epilepsy

  • Dietary therapies specific to controlling seizures have been around for a long time. Some epilepsy centers have diet centers that can recommend and monitor diet treatments like the ketogenic diet, modified Atkins diet, or low glycemic diet.
  • Your epilepsy team should include an epilepsy doctor who specializes in diet therapy and at least a nurse and nutritionist.
  • Sometimes, general improvements in your diet without a special diet can help people with seizures. This approach may help people who can’t follow a more specific diet for any reason. Ask your epilepsy team for a nutritionist and other people who can help in this area.

Creating Your Health Care Team

  • Just like always, you are the captain of your team. Though when seizures persist you’ll need to regroup and consider who and what type of help you may need.
  • First consider how epilepsy affects your life. You’ll want health care professionals or experts from an epilepsy center, other health care groups, or the community to help you manage these issues.
  • Ideally, you want to have your primary care provider in the center of your team with you. He or she can help you keep a broad view of your overall health and coordinate your needs and care.
  • Many times, epilepsy can be the biggest concern. You and your primary care provider may want your epilepsy team to help coordinate your care. This makes sense for some people, especially children or adults with very complicated forms of epilepsy or forms of epilepsy that are associated with other health problems.
  • Make sure that specialists that you see for other health problems know about your epilepsy and talk to your primary care and epilepsy team. So if you see a sleep specialist, heart doctor, counselor, psychiatrist or any other type of provider, they are on your team too!
  • Look for community professionals and supports that can help with work, school, counseling, rehabilitation therapists, respite care, or financial counselors. You may need some of these resources at different points along your journey.
  • Think about digital resources. Do you get support and help online? Make epilepsy.com’s Connect forums and chat as well as your local Epilepsy Foundation as part of your team.