What is refractory epilepsy?

  • January 6, 2022
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In this article

The goal of epilepsy treatment is to become seizure free – that’s according to the International League Against Epilepsy (ILAE). When you are first diagnosed with epilepsy, most people are put on a course of anti-epilepsy drugs (AEDs) by their neurologist. However, for about one person in three, drugs alone don’t help achieve seizure freedom. This is called refractory epilepsy.

Refractory seizures definition

The ILAE’s refractory epilepsy definition describes it as:

“Failure of adequate trials of two tolerated and appropriately chosen and used AED schedules (whether as monotherapies or in combination) to achieve sustained seizure freedom”.

This means that someone has refractory epilepsy if they have tried at least two kinds of AEDs, but their seizures have not stopped.

Refractory epilepsy might happen because:

  • AED side effects are too unpleasant

Some people find that AEDs cause rashes, sickness, depression  or other side effects.  Your physician may adjust your dosage or change medication to improve unpleasant side effects.

  •  Metabolism

‘Metabolism’ is how fast your body processes the chemicals in an AED. Some people’s bodies process them very fast, and without the right amount of medication circulating in your body the AED could be ineffective.  In addition to finding the right dose, your physician will determine the right timing for taking your medication.

  • Honeymooning

Sometimes when you start a new medicine it has immediate effects. However, over time your body gets ‘used to it’ and the medication may stop working.  For this reason it’s important to track your seizure history and share this information with your physician, especially if there is a change in your health.

Learn more: Read about the different terms used to describe refractory epilepsy

Refractory epilepsy definition: what is isn’t

It is important to understand that sometimes people’s seizures are not stopped by AEDs, but this doesn’t always mean they have refractory epilepsy. This could happen if the person’s seizures are not classified correctly. For example psychogenic nonepileptic seizures (PNES), are seizures that occur as a result of psychological causes, such as severe mental stress. Treating the underlying psychological cause can often help to reduce the number of seizures or prevent them happening.  If your seizures are not improving, the first step is to get a complete medical assessment by an epilepsy specialist.  

Learn more: Find out why medication doesn’t work for some people

Refractory epilepsy treatment

If you have refractory epilepsy, the good news is that there are still several methods that can help bring your seizures under control.

First up, you will need to visit an epilepsy treatment center (look for one on the NAEC website). There, epilepsy doctors will talk to you about your experiences and do some advanced tests with EEGs. If they think you have refractory epilepsy, they might use one of the following treatments:

  • Surgery: Removes the part of the brain causing seizures, or disrupts the connections that allow the seizure to spread within the brain
  • Electrical stimulation: Using devices like vagus nerve stimulators that send gentle electrical pulses from an implant in your chest to the vagus nerve in your neck may reduce your seizures. Some patients try this option prior to surgery, or afterward if surgery does not produce the desired result.  Other types of stimulation devices use similar approaches but are implanted differently and directly stimulate the brain.    
  • Diets: Certain diets like the ketogenic diet might be recommended to reduce or control your seizures

Learn more: Guide to the main epilepsy treatment options

Refractory epilepsy statistics

How common is refractory epilepsy, and how much do we know about the associated risks? The following refractory epilepsy statistics tell us more:

  • Around 33% of people with epilepsy have it
  • 50% of people’s seizures are controlled by a first AED. 10% more see improvement when they try a second, and only 3% see improvement when a third AED is tried.
  • Approximately 1 million people in the USA have refractory epilepsy
  • The National Association of Epilepsy Centers (NAEC) recommends that patients seek out a specialized epilepsy center if their seizures are not fully controlled within 1 year of initial treatment.Sudden unexplained death in epilepsy is a risk related to seizures.  The SUDEP rate is 1 per 1000 for people with controlled seizures, but 6 per 1000 for people with refractory epilepsy

Going forward if you have refractory epilepsy

It can be upsetting and stressful to hear that your seizures might  not be controlled by AEDs. However, there are several alternative treatments available for people with refractory epilepsy that have good success rates.  

To start out, it’s useful to begin recording all your seizures in an app like Epsy, as well as noting whenever you take your AEDs. This will give your doctor and team at the epilepsy treatment center more information about your condition and will help them select the best treatment plan for you.  

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