Road to diagnosis

The road to diagnosis with epilepsy can be an arduous journey. Knowing what to expect from your specialist(s) and epilepsy appointments can help prepare you for navigating the health care system.

  • Your epilepsy team

    Having epilepsy can mean interacting with many different members of a health care team. You may receive a referral to a neurologist, who can assist with your epilepsy care. However, you may also be referred to an epileptologist (epilepsy specialist), especially if your seizures are difficult to control or diagnose. While epileptologists are not numerous, they are an excellent choice for assisting with your care. You can ask your family practitioner, or general neurologist, for a referral.

  • How is epilepsy diagnosed?

    A neurologist or epileptologist interview is the first step. The neurologist’s first tool in diagnosing epilepsy is taking a careful birth and medical history, and gathering as much detailed information as possible. This will include both a medical history of the patient and that of family members, any psychiatric condition, the medications taken, descriptions of the seizures, and what happened just before the seizures began.

  • Understanding wait times

    Throughout your journey with epilepsy, you may encounter some long wait times. In Canada, there have been recent efforts to make accessing care easier. These have included increasing the number of Epilepsy Monitoring Unit (EMU) beds in the hospitals of some provinces, and improving the availability of certain medical and surgical procedures.

    Your health care provider should consider wait times, availability and accessibility when referring you to a specialist. However, do keep in mind that candidates for epilepsy surgery may experience long wait times for their surgery. It is important to see an epileptologist sooner rather than later if your health care provider thinks you may be a candidate for surgery.

  • Questions your doctor may ask

    Letting your neurologist or epileptologist know about your past seizure episodes can help determine your future treatment. If you don’t remember what happens during a seizure, it’s important to bring a witness (someone present at the time of your seizure) who can describe it to the neurologist. If possible, capture a seizure on video and bring it with you to your next appointment.

  • Making the most of your appointment

    Good communication is a key to successful diagnosis and treatment of epilepsy. Being an active participant in your office appointment helps you get the most accurate diagnosis possible. It may be smart to bring a relative or friend with you, particularly those who have observed or witnessed your seizures.

  • Tips for your first specialist appointment

    Before your medical visit, write down any questions you have. If possible, write down everything you remember about what brings on your seizures, and also be prepared to discuss your medical history, including any past injuries.

    Questions your neurologist may ask include:

    • Did you have any complications at birth?
    • Have you ever had any head injuries?
    • Did you ever have any seizures with a high fever when you were a child?
    • Does anyone else in your family have seizures?

    Epilepsy can be a complicated condition and you need to learn as much as you can to achieve seizure freedom; so make sure you ask questions. Together with your neurologist or epileptologist, you can make the best decision for your health.

  • Communicating with your health care professional (HCP)

    Talking with your health care professional (HCP) is an opportunity to share what matters to you. Keeping the lines of communication open between you and your HCP is an important way to make sure you are getting the most from your care. If your HCP understands your challenges and what you’re aiming to achieve, they can help you make a plan to reach your goals.