Idiopathic generalized epilepsy: An easy-to-understand introduction

  • March 15, 2022
  • 3
In this article

If you - or someone you care for - has recently received a diagnosis of idiopathic generalized epilepsy, you might be wondering what this means. In this easy-to-understand guide, we look at what idiopathic generalized epilepsy is.

What is idiopathic generalized epilepsy?

Idiopathic generalized epilepsy affects about one third of people who have epilepsy. To understand what idiopathic generalized epilepsy is, it’s helpful to break the name down into its individual parts:

  • Idiopathic: This means an illness that comes ‘from oneself’. In terms of epilepsy, it means that the person was either born with epilepsy or it developed without any other known cause.
  • Generalized: This means that when the person has seizures, electrical discharges happen all over the brain at the same time - rather than just on one side or one specific place. 
  • Epilepsy: This is a condition that causes people to have seizures. A seizure is when electrical discharges happen in the brain.

Other types of epilepsy might be caused by some kind of external factor or disease:

  • A lesion or a tumor on the brain that can be ‘seen’ on an MRI machine
  • Receiving a head injury
  • Having a stroke
  • Dementia or Parkinson’s disease
  • Having a fever or infection

But in idiopathic generalized epilepsy, the cause of the seizures is either unknown, or comes from the person’s genes (these are like instructions in our DNA that ‘tell’ our body how to grow). Also, the brains of people with idiopathic generalized epilepsy look and behave normally when they are not having seizures.

Related: What causes epilepsy?

So is it genetic?

Possibly. There are several different kinds of idiopathic generalized epilepsy, and we know that some of them are definitely caused by peoples genes. However, in other cases there doesn't seem to be a specific genetic cause so we’re still not sure why they happen.

Types of idiopathic generalized epilepsy

There are several subgroups of idiopathic generalized epilepsy (known as ‘syndromes’), and they include:

Each of the syndromes has slightly different seizures associated with it. That said, it is common for people with idiopathic generalized epilepsies to have absence seizures (where you lose consciousness), myoclonic seizures (where you have uncontrollable jerks) and tonic-clonic seizures (where you drop to the floor and shake uncontrollably).

Some kinds of idiopathic generalized epilepsies are lifelong. However, some childhood epilepsies gradually stop on their own as people get older.

Learn more: Difference between generalized and focal epilepsy

Diagnosis and treatment of idiopathic generalized epilepsy

If you have begun having seizures, your doctor will begin by taking a case history to learn more about when they started and what happens. They may then use an EEG and an MRI machine to try and work out what is going on inside your brain.

Treatment for idiopathic generalized epilepsy varies depending on the syndrome you have. However, in most cases antiepileptic drugs are the first treatment doctors will use.

People with epilepsy: Meet Cody, who has generalized tonic-clonic seizures

Your relationship with your doctor

Names like idiopathic generalized epilepsy are very useful for doctors because they help them quickly categorize illnesses. However, these terms can be confusing for people who aren't medically trained - so if you ever have any doubts about what your doctor is saying, ask them to rephrase it in a way that you understand. 

This can help you to get more out of appointments with your epilepsy treatment team.

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