E-360 Edition 14: Epilepsy pathway and review

Home > E-360 Edition 14: Epilepsy pathway and review

We frequently communicate with people who do not have a clear picture or indication that they have a diagnosis of epilepsy. Sometimes this is due to having seizures or events that are:

  • Unwitnessed
  • Difficult to recognise as a seizure
  • Infrequent
  • Complicated by other factors or health problems
  • Possibly not seizures

So this is a broad guide about what to do if you have a seizure or event that may be a seizure.

First seizure

  • After your first seizure, either go to accident and emergency for an assessment and examination or visit your GP
    • You may or may not have an EEG or brain imaging, depending on the circumstances of your seizure
    • You will most likely be referred to your GP after a visit to accident and emergency
    • You will be referred to a neurologist if it is suspected epilepsy or another specialist if it is not a seizure
    • Some major hospitals have a first seizure clinic which you may also be referred to
  • Note: You should not drive if you have had a seizure or any event that has affected your consciousness. Speak to your doctor about the period of time which you should not drive.
  • See your GP:
    • If the GP suspects epilepsy, you will be referred to see a neurologist
    • If you didn’t get an EEG or any scans done when in hospital, then it’s a good idea to at least have an EEG before seeing the neurologist. Speak to your GP about this
    • There is usually a waiting period for appointments to see a neurologist; this can be weeks to many months depending upon your location and the doctors availability. If you continue to have seizures or your situation is urgent, go back to your local hospital accident and emergency department.
  • Appointment with neurologist:
    • You will be asked about your medical history, family history and the events surrounding the seizure
    • Take someone who has witnessed your seizure(s) or a video recording of the seizure if possible.
    • Tests ordered (if not previously done) could include MRI scan, EEG, blood tests or appropriate tests with relevant specialist.
    • Take along a list of questions to ask. You may find ‘You and Your Doctor – Partners in Health’ factsheet useful in formulating your questions.

Epilepsy diagnosis

  • Appointment with neurologist:
    • The neurologist will discuss a range of possible diagnoses an epilepsy diagnosis is not clear at that point in time..
    • Seizure type and possible or suitable treatments, safety and risks and relevant information will be discussed.
  • Treatment:
    • Discuss choices of antiepileptic drug (AED) and possible side effects.
    • Initial treatment for most people begins with taking a single AED, starting on a low dose which may be gradually increased until the most effective dose is found.
    • If seizures continue, an alternative AED may be tried or added on.
    • Sometimes changes to medication regime can take time if seizures don’t respond.
    • Ask what to do if seizures continue or if you are concerned about side effects
  • Lifestyle issues to think about:
    • The neurologists will consider your individual needs depending on age, gender, occupation, location and other health issues.
    • Raise any issues you are concerned about with the neurologist.
    • Driving, employment, education and pregnancy will need to be discussed.
    • If you need further information or would like to speak with an specialist Epilepsy Nurse contact Epilepsy Action Australia on 1300 37 45 37 or [email protected] or epilepsy.org.au

What you can do to help:

  • keep a seizure diary
    • this can help identify seizure triggers and patterns, which can help with management, Epidiary, a free online diary app for smart phones is available here 
  • lead a healthy lifestyle
    • many people find that simple things like a good diet, managing stress and getting enough sleep helps with seizure control
  • get an annual review with either your GP or neurologist
  • if you are having trouble with seizure control or side effects, make an appointment with your neurologist
  • if you are having more seizures or more severe seizures and can’t see your neurologist soon, then go to accident and emergency – you may need to be referred to an epilepsy specialist centre

Epilepsy specialist centre:

  • Referral to epilepsy specialist centre.
    • These centres have doctors who are epilepsy specialists, and often have an epilepsy nurse.
    • More investigations and tests can be done such as prolonged video EEG telemetry to help with further diagnosis.
    • Other treatment options may need to be considered.
    • If seizures are not responding to treatment in any way, then you may not have epilepsy.
    • Referral to an appropriate specialist will be made if the diagnosis is something other than epilepsy