An Overview of Intractable Epilepsy

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Intractable epilepsy is diagnosed when someone has had years of uncontrolled seizures. This means medication no longer works well enough to control their seizures, their seizures are frequent and severe, and seizures affect their quality of life. Research shows up to 40 percent of people who have epilepsy will eventually develop intractable epilepsy, also called drug-resistant epilepsy or refractory epilepsy. 

Symptoms

The main symptoms of intractable epilepsy are continuing seizures even when taking anti-seizure drugs. Seizures will vary in intensity and frequency and can last minutes or seconds.

Some people with intractable epilepsy may have convulsions, which means they cannot stop shaking. Seizures may also cause:

  • Blackouts
  • Loss of bladder or bowel control
  • Staring into space
  • Falling
  • Stiff muscles
  • Biting the tongue

Symptoms may be more prominent in children, as this type of epilepsy is estimated to affect 10–20 percent of children with epilepsy, according to one report in The Indian Journal of Pediatrics.

Causes

A person is said to have intractable epilepsy when regular medications are not enough to treat their seizures. There are many reasons why normal epilepsy drugs may not work well, including:

  • The seizures simply become stronger than the medication when given at medically safe dosage
  • Poor compliance with medication (missing doses)
  • Complicating factors, such as extreme stress, sleep deprivation and illness
  • Additional medical conditions, including syncope—a temporary loss of consciousness related to insufficient brain blood flow. Evidence shows that the two conditions are often confused, but there are instances of individuals having both conditions. One study reported in BMC Neurology finds up to 41.1 percent of those with epilepsy had drug-resistant epilepsy, and of those, 65.9 percent had both syncope and epilepsy.
  • Brain abnormities
  • Genetic causes
  • Medication tolerance. In this case, a medication generally works for a few months and then symptoms return. The cycle will repeat with a new medication.  
  • Medications just don’t help some people. Some people may need more than one medication to control seizures, but those additional medications don’t stop seizures altogether. 

One study reported in the New England Journal of Medicine finds people who have many seizures prior to starting treatment, or who have inadequate responses to initial treatments, are more likely to develop intractable epilepsy. In some cases, side effects were to blame, and patients had to discontinue treatment, and in other cases, the drugs themselves were not successful.

Treatment

Antiepileptic drugs (AEDs), as single treatments or combination treatments, are a first-line of treatment prescribed to manage seizures. When one medication does not work, another is attempted, but unfortunately, the success rate becomes reduced after numerous AED failures.

According to one report in the New England Journal of Medicine, after two failed therapies, the success rate for the third treatment is very low—around 4 percent.

Generally, after multiple AED failures, doctors will start looking to other ways to treat and manage seizures. Additional treatment options after medication failure may include lifestyle changes, VNS therapy, and surgery. 

Diet Changes

Some research has shown the ketogenic diet may lessen the number of seizures for some people. This diet is a high fat, low carbohydrate one that involves strict monitoring by a dietitian. It usually prescribed for children whose seizures are not responding to medications. One study reported in the Iranian Journal of Pediatrics shows a success rate of 58.4 percent in children whose epilepsy was previously not well-managed with medication.

Improving Sleep

Seizures are sensitive to sleep patterns. When people with epilepsy don’t sleep well, it is more likely they will have seizures. Lack of good quality sleep may also increase the frequency and length of seizures. It is, therefore, important to develop consistent sleep habits, including getting at least eight hours of sleep every night and going to bed and getting up at the same times.

VNS Therapy

Vagus nerve stimulation (VNS) therapy involves a small electric device, much like a pacemaker. The device is implanted under the skin of the chest and sends electrical impulses to the brain through the vagus nerve, a nerve in the neck. The goal of treatment is to reduce the frequency and intensity of seizures.

Surgery

Surgery in the brain can control seizures and may involve:

  • Implanting a device to treat seizures
  • Removing the area of the brain causing seizures
  • Disrupting nerve pathways that promote seizure impulses

Surgery to treat intractable epilepsy is not for everyone. It is only an option if the part of the brain causing the seizures can be identified. Moreover, the area to be removed must not be one that affects important functions, such as speech, touch, and movement.

A Word From Verywell

Intractable epilepsy does not always remain medication-resistant. One of the many treatments can help manage symptoms. Additionally, people living with epilepsy may benefit from improving their lifestyle, including stress management, improving sleep, and managing other health conditions. Even without new or specific therapies and/or lifestyle changes, some people’s epilepsy does improve and goes back to being medicinally manageable.

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