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Refractory Epilepsy

People with epilepsy have seizures. During a seizure, the nerve cells in the brain don't communicate normally. The usual electrical activity in the brain becomes altered. These seizures may last a few seconds or a few minutes.

About one-third of people with epilepsy will eventually develop refractory epilepsy. This means that medicines don't work well, or at all, to control the seizures.

Facts about refractory epilepsy

Refractory epilepsy can have a big effect on your life. People with refractory epilepsy may have trouble at work or school. They may worry a lot about when their next seizure will come. They may also have injuries that result from their seizures. If your doctor thinks you have refractory epilepsy, he or she may suggest that you visit a medical center that specializes in epilepsy.

Symptoms

These are symptoms of a seizure:

  • Convulsions, or shaking movements

  • Loss of consciousness

  • Loss of bowel or bladder control 

  • Staring into space

  • Falling

  • Muscle rigidness

If you still have seizures while you're taking an antiepilepsy drug, you may have refractory epilepsy.

Types of Seizures

If you have refractory epilepsy, the type of seizures you have may affect your treatment. Seizures may be:

  • Primary generalized. This means they involve a lot of your brain tissue on both sides of your brain.

  • Partial (focal) seizures. This means seizure activity starts in a smaller area of your brain and may later spread out to a wider area.

Diagnosis

Doctors have many ways to help diagnose refractory epilepsy. Your doctor will likely ask you many questions about your seizures. You will likely also have a test called an electroencephalogram. This involves placing electrodes on your scalp to measure your brain's activity. Your doctor may also want you to have a CT or MRI scan of your brain. If you eventually need surgery to treat the problem, your doctor may do more tests like these to find out where your seizures are starting.

You will need to work closely with your doctor to find out if you have this problem. You may need to have more seizures while using several drugs before your doctor feels your condition is refractory. Your doctor may want you to check in regularly to report your symptoms. Your doctor may try several drugs at different dosages.

Treatment

Your doctor may suggest that you take another antiepilepsy drug, either alone or with others. Medications include:

  • Gabapentin

  • Lamotrigine

  • Levetiracetam

  • Oxcarbazepine

  • Tiagabine

  • Topiramate

  • Zonisamide

If drugs aren't treating your seizures, your doctor may suggest other methods:

  • Surgery. Surgery may be especially helpful if you have refractory partial epilepsy. Your doctor may recommend surgery if you still have seizures after trying two or three antiepilepsy medicines. During the procedure, the doctor will remove the part of your brain that's starting the seizures.

  • Electrical stimulation. If you can't have or don't want brain surgery, your doctor may suggest vagus nerve stimulation (VNS) with an implantable device. The device is placed under your skin at your chest area, with wires that connect to the vagus nerve in your neck. It sends a current to the nerve and may reduce your number of seizures. It may also help lessen the severity of a seizure that has already started. 

Prevention

Be sure to use medicines exactly as your doctor directs. Using your antiepilepsy drugs the right way may help them work better to control your condition.

Managing refractory epilepsy

A special diet called a ketogenic diet may help control your seizures. This type of diet is high in fats and low in carbohydrates. If you follow this diet, you will need to work closely with your doctor and take supplements of certain nutrients as needed.