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Intractable Epilepsy — An Overview

Posted on August 12, 2021
Medically reviewed by
Evelyn O. Berman, M.D.
Article written by
Brooke Dulka, Ph.D.

Intractable epilepsy (or refractory epilepsy) is any form of epilepsy that is not responsive to medication. In other words, intractable epilepsy is drug-resistant epilepsy. In cases of intractable epilepsy, seizures are not well controlled. One study in Western Europe found that about 1 in 8 people with epilepsy developed this intractable or drug-resistant form, although other research suggests this rate may be higher.

Intractable epilepsy represents a significant burden on both the person with epilepsy and their health care requirements. Because a person doesn’t know when a seizure might happen, their epilepsy can cause psychological distress and day-to-day struggle. Understanding intractable epilepsy, including its symptoms, treatments, and outlook, may help people with this form of epilepsy better manage their condition.

Symptoms of Intractable Epilepsy

Intractable epilepsy symptoms include:

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

What separates intractable epilepsy from other seizure disorders is that medications cannot control the frequency or severity of seizures, also called ictal activity. Intractable epilepsy is not just limited to one seizure type. Seizures can be generalized, in which the seizure affects both sides of the brain, or they may be partial (focal), in which the seizure activity starts in a smaller area of the brain but spreads to a larger area.

Risk Factors for Intractable Epilepsy

The causes of intractable epilepsy are largely unknown. Like other seizures, sometimes they are the result of structural abnormalities in the brain, such as tumors or lesions. However, there are several risk factors for intractable epilepsy. In a study of children with epilepsy, all of the following were found to be significant predictors of the development of intractable epilepsy:

  • Early age at first seizure onset
  • High initial seizure frequency
  • Infantile spasms (a seizure disorder in babies that may go away with age) and a history of neonatal seizures
  • Abnormal neurodevelopment
  • Abnormal neurological exams
  • Abnormal results on brain imaging scans

Diagnosing Intractable Epilepsy

Diagnosing intractable epilepsy is much like diagnosing other forms of epilepsy. Brain imaging techniques such as magnetic resonance imaging (MRI) and electroencephalograms (EEG) may be used. Intractable epilepsy is marked by its lack of response to medications. Therefore, before a diagnosis of intractable epilepsy can typically be made, a neurologist will likely have a person try several prescription drugs (or a combination of prescription drugs). Only in this way can a physician confirm that the seizures are indeed refractory and diagnose intractable epilepsy.

Treating Intractable Epilepsy

Treating intractable epilepsy can be difficult, but seizure control is very important.

Antiepileptic Drugs

Sometimes the following antiepileptic drugs are tried (alone or in combination) in the course of diagnosing and treating intractable epilepsy:

Surgery

Because intractable epilepsy is drug-resistant, epilepsy surgery is sometimes recommended as a treatment option. It is important to weigh the potential risks and benefits of surgical procedures against the chance of improvement in quality of life and any potential side effects.

Additionally, only some people are good candidates for epilepsy surgery. Candidacy may largely depend on the type of epilepsy and where the seizures begin in the brain, such as the cortex or hippocampus. Different forms of epilepsy can vary in terms of their surgical prognosis (chance of success).

Stimulation

Your health care team may consider other treatment options for intractable epilepsy, such as vagus nerve stimulation and deep brain stimulation.

The vagus nerve transmits information between the brain and other internal organs. In one study of 41 people with intractable epilepsy, vagus nerve stimulation was scientifically shown to have a positive effect on mood and quality of life. Vagus nerve stimulation may also limit how many seizures occur. In one study on children ages 6 to 12 with intractable epilepsy, vagus nerve stimulation was associated with improved seizure frequency and lower psychological distress surrounding epilepsy.

In one study of seven people whose intractable epilepsy did not respond to vagus nerve stimulation, deep brain stimulation was shown to reduce seizure activity. Deep brain stimulation involves implanting electrodes into the brain that help normalize electrical activity there.

Prognosis and Outlook for Intractable Epilepsy

The prognosis or outlook of intractable epilepsy can be mixed. Intractable epilepsy has the potential to be progressive (get worse over time). If people with epilepsy and their doctors don’t pursue treatment, there may be several risks to consider, including potential damage to the nervous system, comorbidities such as bone fractures or depression, and limitations on education, social life, and career. However, with advances in techniques such as vagus nerve and deep brain stimulation, people with intractable epilepsy may move toward a better quality of life.

Building a Community

MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 98,000 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.

Are you living with intractable epilepsy? Share your experience in the comments below, or start a conversation by posting on MyEpilepsyTeam.

Evelyn O. Berman, M.D. is a neurology and pediatric specialist and treats disorders of the brain in children. Review provided by VeriMed Healthcare Network. Learn more about her here.
Brooke Dulka, Ph.D. is a freelance writer at MyHealthTeams. Learn more about her here.

A MyEpilepsyTeam Member said:

Bless your heart, you sound like you’ve been to hell and back. And that’s the main thing: Your back! And your ready to fight this thing they call epilepsy. We beat up ourselves because of it and we… read more

posted about 8 hours ago

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