February 23, 2021

Everything you need to know about epileptologists

Managing your condition

If you have an upcoming appointment with an epilepsy neurologist, it’s good to know what to expect. Learn how to find a neurologist and what they do.

Has your family doctor told you that you should have an appointment with an epilepsy neurologist? If you are not familiar with what neurologists do, you might be unsure what to expect from the meeting.

Here is everything you need to know about your epilepsy neurologist.

What does a neurologist do?

According to the American Academy of Neurology, a neurologist can be defined as: “a medical doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system”.

Our bodies have a very complicated system for sending messages around the body called the nervous system. The system uses cells called neurons that send electrical signals around the body, and to and from the brain. Your nervous system controls many things, from how we walk to very small movements like writing with a pencil. Doctors who specialize in treating problems with the nervous system are called neurologists.

Neurologists spend almost 10 years in training before they are fully qualified. And, if they wish to specialize in particular illnesses such as epilepsy (or other brain issues like dementia, headaches or stroke) they may need to do one or two more years of study.

Epilepsy neurologist talking with her patient

How can a neurologist help with epilepsy?

There are over 600 different types of neurological conditions. Some neurologists choose to become general neurologists, which means that they will see people with all different kinds of brain, spine and nervous system problems. Others choose to specialize and only see patients who have one condition, such as epilepsy (these are called epileptologists).  If your epilepsy is not well controlled (typically within the first year of treatment) you will need to be treated and evaluated by an epilepsy specialist.

Around one third of people with epilepsy have seizures that cannot be controlled with regular medication (this is called ‘refractory’ or drug-resistant epilepsy). In this case it can be useful to speak to an epileptologist who will provide more specialized care.  

What tools do neurologists use?

Neurologists use a wide variety of tools to help them diagnose and understand what is going on for you. These tools and methods include:

  • Family history and interview
  • Physical examination
  • Electroencephalogram (EEG)
  • CT scan
  • MRI
  • Blood tests
  • Apps like Epsy which help monitor their patient’s behavior
  • Video recordings

Learn more: What is seizure tracking and why’s it important?

How to find an epilepsy neurologist

Sometimes your family doctor or community neurologist might know an epileptologist who they can refer you to. Alternatively, you can speak to other people in a local epilepsy support group to find out if there is anyone nearby that they would recommend.

There are also several online tools to find neurologists or epilepsy centers.

How to prepare for your epileptologist appointment

If you have an appointment with an epileptologist coming up, try to prepare in advance so you can get the most out of the meeting:

  • Keep a digital diary of all your seizures, triggers and medication compliance since your last appointment in the Epsy app
  • Connect with your doctor on Epsy Hub, the online platform for doctors which synchronizes your data from the app. Allowing your doctor to view your insights and patterns for more informed conversations during an appointment. 
  • Make sure they have all your medical records in advance of the meeting (ask the receptionist at your family clinic to send them to the neurologist or epilepsy center)
  • Bring any video recordings of your seizures for them to watch and analyze
  • Bring along a family member or friend who can take notes and provide the doctor with additional information
  • Prepare any questions that you have in advance and try to ask them. There are no ‘wrong’ questions
  • If you had prior treatments, and emergency or hospital admissions, be sure to share these details at your epileptologist appointment

Benefits of seeing an epileptologist

If you have an upcoming appointment with an epilepsy neurologist this can be a positive step. They will be able to give you the most advanced treatment and their expertise in epilepsy could mean that they might be able to control your seizures if regular medication is not helping you.

To get the most out of your conversations with your epilepsy neurologist, try using Epsy to record all information about your seizures, medication and triggers. You could discuss using the Epsy Hub with your neurologist too. The data from the Epsy app is sent through to the hub so your neurologist understands your personal experience better. That could lead to improved conversations in appointments and help you to get the most optimal treatment plan possible.