Intractable epilepsy is a term that describes epilepsy that’s uncontrolled even after appropriate treatment with at least two antiepileptic drugs. You may have also heard intractable epilepsy referred to as uncontrolled, drug-resistant, or refractory epilepsy.

If you or your child has intractable epilepsy, you may not know when the next seizure will happen. Intractable epilepsy can be difficult — but not impossible — to treat. Continue reading to learn more about intractable epilepsy and how it’s managed and treated.

What Are the Symptoms of Intractable Epilepsy?

People with intractable epilepsy can experience uncontrolled seizure symptoms, such as:

• Convulsions
• Shaking or falling
• Staring into space
• Rigid or stiff muscles
• Loss of consciousness
• Loss of bowel and bladder control

The hallmark of intractable epilepsy is that medications can’t control the frequency or severity of seizures.

Who Gets Intractable Epilepsy?

Studies have found that seizures aren’t controlled with anti-seizure medications in about 30 percent of people with epilepsy, according to a 2021 review article. Incidence of intractable epilepsy varies from 15 percent in children to 34 percent in adults.

Intractable epilepsy isn’t a specific seizure disorder, so it’s difficult to predict who’ll have it. However, it’s more likely to appear in certain groups. Studies have found that intractable epilepsy is more likely to develop in children who develop epilepsy before age 2 years or have the following factors:

• Epilepsy caused by a structural abnormality, an infection, or problems with brain development
• A syndrome linked with intractable epilepsy, such as Lennox-Gastaut, Dravet, or Doose syndrome
• A genetic condition associated with intractable epilepsy
• History of status epilepticus (seizures that last five minutes or more)
• Seizures that continue after at least six months of treatment
• Lack of prompt treatment for seizures
• A developmental condition such as autism or a speech delay

In contrast, studies show that people with idiopathic epilepsy have a lower risk of intractable epilepsy. Idiopathic epilepsy is a subtype of general epilepsy that includes childhood and juvenile absence epilepsy, juvenile myoclonic epilepsy, and generalized tonic-clonic seizures.

What Types of Seizures Occur With Intractable Epilepsy?

Since intractable epilepsy is not a defined type of epilepsy, the seizures may look different from person to person. There are two main types of seizures — generalized and focal seizures (also known as partial seizures). A generalized seizure simultaneously affects both brain hemispheres from the beginning. A focal seizure starts in a specific part of the brain but can spread to a larger area, becoming generalized.

People with focal seizures may be more likely to develop intractable epilepsy than people with generalized seizures.

How Is Intractable Epilepsy Diagnosed?

Intractable epilepsy is diagnosed using tests similar to those for diagnosing other forms of epilepsy, such as MRI scans and electroencephalograms (EEGs). You may see an epilepsy specialist called an epileptologist or a neurologist.

Your doctor may ask questions to find out why your medication isn’t working. For example, it might be interacting with other medications, or you might be using the wrong drug, taking the wrong dose, or missing doses. Other possible reasons for inadequate treatment include exposure to seizure triggers such as flashing lights, illness, lack of sleep, and increased stress.

You may need to try several medications before your doctor diagnoses you with intractable epilepsy. A MyEpilepsyTeam member described their experience: “I have tried eight or nine medications and was only able to tolerate three of them without terrible side effects, and those have not been able to control my seizures.”

Additionally, your doctor must rule out other conditions that can mimic seizures, including:

• Fainting
• Stroke
• Low blood sugar
• Migraine headaches
• Movement disorders
• Panic attacks

Read more about the path to epilepsy diagnosis.

How Is Intractable Epilepsy Treated?

Although the right treatment may be difficult to find, people with intractable epilepsy have several options. A MyEpilepsyTeam member shared, “Given my 32 years of experience living with intractable epilepsy, I have seen that it is trial and error for effective treatment and management.”

Antiepileptic Drugs

Your doctor may suggest antiepileptic drugs used alone or in combination, such as:

• Tiagabine (Gabitril)
• Gabapentin (Neurontin)
• Lamotrigine (Lamictal)
• Levetiracetam (Keppra)
• Oxcarbazepine (Oxtellar XR)
• Topiramate (Topamax)
• Zonisamide (Zonegran)

If you’ve already tried two anti-seizure drugs, there’s less chance that a third drug will work.

Surgery

Your doctor may recommend a type of surgery called resective epilepsy surgery to remove the part of your brain causing seizures. This procedure may be helpful when the area of the brain causing seizures has been identified.

A corpus callosotomy can also be effective for reducing seizures. During this procedure, a surgeon will cut the nerve fibers that connect the brain’s two halves, called the corpus callosum.

Electrical Stimulation

For people who can’t or don’t want to have brain surgery, electrical stimulation may be an option. With this type of therapy, a device that uses electrical activity to reduce seizures is implanted into your body.

Options for electrical stimulation include vagus nerve stimulation (VNS), in which a device placed in the chest sends regular pulses of electrical energy to the brain via the vagus nerve in the neck. Other options, such as deep brain stimulation and responsive neurostimulation (RNS), use an implantable device in the brain.

Lifestyle Changes

A special diet may help people with epilepsy caused by problems related to metabolism (the way the body turns food into energy). For example, people who have trouble transporting glucose to their brain (known as GLUT1 deficiency) may benefit from a high-fat, low-carbohydrate diet, such as a ketogenic or modified Atkins diet.

Your doctor may recommend supplements such as pyridoxine or creatine if you have a type of vitamin-dependent epilepsy.

What’s the Outlook for People With Intractable Epilepsy?

Children and adults who aren’t seizure-free may need extra support. Intractable epilepsy may change or get worse over time. “I have intractable epilepsy. For many years, I just had the odd tonic/clonic seizure. For the last 20 years, they’ve changed in type and frequency,” one MyEpilepsyTeam member said.

Even with treatment, intractable epilepsy can have negative consequences, including:

• Difficulty with daily activities
• Developmental delays in children
• Risk of epilepsy-related injuries
• Increased risk of behavioral or emotional problems
• Difficulty concentrating
• Inability to drive
• Reproductive issues
• Increased risk of sudden unexpected death in epilepsy (SUDEP)
• Depression and anxiety
• Increased risk of side effects from taking multiple anti-seizure drugs

Talk to your health care team about the goals of your epilepsy treatment. Working together, you can find an epilepsy treatment that improves your quality of life with the fewest side effects. You might also consider joining a clinical trial studying a new treatment for intractable epilepsy.

Talk With Others Who Understand

MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 119,000 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.

Do you have intractable epilepsy? Have you found a treatment that works for you? Share your experience in the comments below, or start a conversation by posting on your Activities page.