When Medication Doesn't Control Your Seizures

Epilepsy Monitoring
A man wears an epilepsy monitoring device. Keith Brofsky / Getty Images

You have intractable epilepsy when the medications or other medical treatments prescribed to treat your epilepsy fail to control your seizures. If this happens to you, your doctor likely will discuss alternative ways of keeping your seizures at bay. These alternative treatments may include a very restrictive diet or even surgery.

Intractable epilepsy can go by several different names, including refractory epilepsy, treatment-resistant epilepsy, uncontrolled epilepsy or drug-resistant epilepsy.

You may also hear physicians talk about "intractable seizures." All of these names mean basically the same thing: treatments haven't brought your epilepsy under control.

This situation is more common than you'd think in epilepsy — some 30% of everyone with epilepsy continue to have seizures that interfere with their quality of life despite taking medication. If you expand the definition of intractable epilepsy to include anyone who has a seizure while on medication (as some researchers and clinicians suggest), the numbers are even higher.

Why Do Some Have Intractable Epilepsy?

That's not always clear. It's of course possible that the original diagnosis was wrong, and you don't have epilepsy after all. This actually happens in a substantial minority of cases that initially are thought to be intractable epilepsy — in one study, some 13% of people referred to specialists for intractable epilepsy didn't have epilepsy.

But most people diagnosed with epilepsy do have the condition. Therefore, if treatment isn't effective, you may need a different treatment, or there may be a lifestyle issue triggering your seizures.

If your epilepsy fails to come quickly under control with the first medication treatment regimen and you're clearly following your treatment plan, your doctor may recommend changing medications.

It's not until two or more drugs have failed to work for you that physicians consider your epilepsy to be intractable.

Treatment Options for Intractable Epilepsy

Even if you have intractable epilepsy, that doesn't mean your condition can't be treated. There are several options for treatment.

Sometimes, a different medication will bring your epilepsy under control. If you're having trouble remembering to take your medication or your medication causes major side effects for you, your doctor can work with you to solve the problems associated with your drug treatment.

If medication just doesn't work, you might want to consider surgery to control your seizures. There are several different types of surgery, each with risks and potential benefits. You should be evaluated at a comprehensive epilepsy center to determine what's recommended in your specific case.

Other possible treatments for intractable epilepsy include the ketogenic diet, vagus nerve stimulation, the RNS System, and even biofeedback.

Once again, the clinicians at a comprehensive epilepsy center can evaluate the best options for you and make recommendations.

Sources:

Epilepsy Foundation. Refractory Epilepsy fact sheet. Accessed Dec. 10, 2015.

Nagai Y et al. Central Mechanisms of Electrodermal Biofeedback in Reducing Seizure Frequency in Patients with Epilepsy: Neuroimaging Study. American Epilepsy Society Annual Meeting 2015 abstract 3.277.

Schuele SU et al. Intractable epilepsy: management and therapeutic alternatives. Lancet Neurology. 2008 Jun;7(6):514-24.

Smith D et al. The misdiagnosis of epilepsy and the management of refractory epilepsy in a specialist clinic. QJM. 1999 Jan;92(1):15-23.

Ye F et al. Efficacy of and patient compliance with a ketogenic diet in adults with intractable epilepsy: a meta-analysis. Journal of Clinical Neurology. 2015 Jan;11(1):26-31.

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