Has Your Epilepsy Treatment Failed? Who Decides?

Whether your epilepsy treatment is a success or a failure often depends on whom you ask. Your doctor may judge it by the numbers: How many seizures do you have if you take so many milligrams of medication? If more milligrams or more medications equal fewer seizures, that's progress, and no seizures at all equals success. You or your family, on the other hand, may see a different equation. You'd certainly like to have no seizures, but you'd also like to be alert, awake, and free of the other physical and emotional effects that seizure medicines so often produce.

Another important consideration is how long you've been looking for an effective treatment. The longer you live with poorly controlled epilepsy, the more chronic problems you may face. Even if you have few seizures, epilepsy can touch your self-perception, security, independence, thinking skills, social function, and emotional well-being.

The final critical variables in the equation are the individual circumstances that determine how many seizures or what kinds of side effects are compatible with the life you want. Every person's needs are different. Getting your doctor to fully understand the impact on you of your epilepsy and its treatment is the first step in improving the quality of your life.

The next step is to communicate with the doctor about your progress, or lack of it. What if the doctor says that your epilepsy is "intractable" (difficult to relieve, remedy, or cure) or "refractory" (resistant to treatment)? Should you just accept that judgment and resign yourself to a diminished life? Who should decide when to apply these terms? What is "intractable" epilepsy anyway?

Epilepsy is considered "intractable" when the patient has persistent seizures or medication side effects that interfere with quality of life. But there's a big problem with this definition—there are no standards for how long or how vigorously epilepsy must be treated before the label is applied.

Another problem is that the "intractable" label implies that biological properties of the epilepsy are preventing seizure control. It assumes that the diagnosis is correct and the treatment has been rational and thorough. If these assumptions are wrong, the label has little meaning:

• In some studies, over 30% of patients thought to have intractable epilepsy were found to have other disorders instead, most often psychogenic seizures. The other disorders often can be controlled, but only by an entirely different approach. About 20% of this group has both epilepsy and the other condition.
• If seizures are classified incorrectly, an effective treatment may be overlooked. For example, juvenile myoclonic epilepsy (JME), which represents about 7% of all cases of epilepsy, often goes undiagnosed for a decade or more. The seizures of JME usually can be well controlled by Depakote (valproate), but if JME is not identified, the doctor may try other medicines that fail to control the seizures or even worsen them.
• A seizure medicine that might be effective may be needlessly ruled out because you had problems with side effects or seizures while taking it. Perhaps the side effects were intolerable when the dosage was started at a high level or increased too quickly. Starting again with lower, slower increases may work much better. Or the medicine may have been judged a failure at controlling seizures when in fact you didn't take many prescribed doses! Good control of your seizures depends on your taking all your medications as prescribed. Keep a record of any doses you miss and be honest with your doctor if you've had seizures at these times. Your avoidance of lifestyle factors that can provoke seizures is also important. If you're doing things that you know increase the likelihood of having a seizure, it's hard to judge how well the medication is doing its job.
• The doctor may continue trying various combinations of seizure medicines year after year. The chances are slim that another medicine or combination will be very effective after two or three have clearly failed. In the meantime, chronic problems grow worse and valuable opportunities are lost. It's usually possible to tell within a year or two whether medication is likely to give a patient good seizure control, especially if seizures occur frequently. Other approaches can then be considered.

Your perspective is the most important in deciding whether the overall quality of your life with epilepsy is acceptable to you. Don't feel that you must always go along with the doctor's ideas. If your doctor says that your seizures are intractable, it may be time to ask for a referral to a comprehensive epilepsy center.

Reassessment by a different set of eyes and ears may shed new light on an old problem. Sometimes the conclusion is that your present treatment is the best it can be. But sometimes the epilepsy center staff may detect a misdiagnosis or may suggest that you could be a good candidate for a different approach, such as surgery. Again, it will be your choice. An epilepsy center also may be able to offer you an investigational drug, one that's still being tested. Occasionally these work better at controlling seizures. More often, they may reduce side effects—sometimes enough that patients change their minds about surgery.

Both doctors and patients must reconsider how they define successes and failures in treating epilepsy. We can't just label epilepsy with frequent, intense seizures as intractable and call for more medication. Nor should we label infrequent or mild seizures or side effects as harmless and acceptable. Instead, both you and the doctor need to consider the overall quality of your life and work to make it the best it can be.