An Overview of Intractable Epilepsy

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

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. They are caused by electrical imbalances in the brain and hyperactive neurons.

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

Normal epilepsy drugs may not work well for many reasons, 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 people having both conditions. One study reported in BMC Neurology found that 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 abnormalities
• 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 always stop seizures altogether. 

In some cases, side effects were to blame, and patients had to discontinue treatment, and in other cases, the drugs themselves were not successful.

Typically, you must be diagnosed with epilepsy for a considerable amount of time before it can be labeled intractable. Your doctor will consider factors such as:

• How often you have seizures
• How well you've stuck to your treatment regimen
• If you still have seizures when properly medicated

Much like when you went through the initial diagnostic process for epilepsy, you can expect a variety of tests and scans once your epilepsy is declared intractable. These can include:

• Electroencephalogram (EEG)
• Computerized tomography (CT) scan
• Magnetic resonance imaging (MRI)

These scans may help your doctor identify previously unknown factors that may influence future treatment decisions, which may involve surgery or an implant.

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

Generally, after multiple AED failures, doctors will start looking at 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, which is 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.

Intractable seizures are difficult to live with. You may not be able to drive, go to work, or take part in activities you enjoy because of your seizure risk. You may have to face considerable lifestyle changes, at least until you find treatments that reduce your seizure frequency.

It's important to develop healthy coping strategies for multiple aspects of your life—emotional, physical, social, and practical.

Don't think of a diagnosis of intractable epilepsy as an endpoint. It doesn't mean treatments won't work for you, just that you haven't found the right ones yet. Keep working with your doctor to find something that helps.

A Word From Verywell

Intractable epilepsy does not always remain medication-resistant. One of the many available treatments may help you manage your symptoms. Additionally, you may benefit from improving your lifestyle. Even without new or specific therapies and/or lifestyle changes, some people’s epilepsy does improve and can eventually be managed by medicine.