The goal of seizure disorder management is to render the patient seizure-free without side effects.
"If you don't have a good handle on epilepsy, it can be frightening. It still startles me when I see a seizure," says David M. Treiman, MD, director of the Epilepsy Center at Barrow Neurological Institute in Phoenix, Arizona.
"Epilepsy is barely taught in medical schools," he says. Furthermore, there is still a stigma attached to the disorder. Although there has been much improvement during the past two decades in terms of educating neurologists and primary care physicians in the use of antiseizure medications and as to when a referral to a neurosurgeon is warranted, primary care physicians should not hesitate to call an epileptologist for advice. "A few simple questions answered in a couple of minutes would greatly enhance the care for a patient," says Treiman. "It doesn't require the PCP to become an expert."
The goal of seizure disorder management is to render the patient seizure-free without side effects. This usually requires referral to specialists but all the experts at our Clinical Centers of Excellence agree that there are many things primary care physicians can keep in mind when seeing patients who are struggling to reach a seizure-free state.
The first thing to consider when medication is not controlling seizures in a recently diagnosed patient is a misdiagnosis. "Many patients with epilepsy are misdiagnosed," says Orrin Devinsky, MD, director of the New York University Comprehensive Epilepsy Center. "Some do not have epilepsy. Others have a different epilepsy syndrome than the one diagnosed, which has important therapeutic implications."
When the diagnosis is accurate and the medication has previously worked, breakthrough seizures can occur. According to Devinsky the most common reasons for breakthrough seizures are missed medication, sleep deprivation, excessive alcohol consumption, and illness.
In general, if seizures are chronically uncontrolled or if medication side effects are persistent, patients should be referred to a specialty center for evaluation or in some cases, reevaluation. Tim Powell, MD, an epileptologist at Rockwood Clinic, Spokane, Washington, agrees. He recommends referral after the failure of a second antiseizure drug so that a correct diagnosis and more aggressive therapy options or surgery can be considered.
Overall, primary care physicians should keep in mind that the older medications, such as phenytoin, phenobarbital, and carbamazepine are associated with significant drug-drug interactions and cause more chronic side effects, including bone loss. Devinsky says that newer antiepileptic agents should be considered whenever possible.
"Primary care physicians should never discontinue an epileptic patient's medication without working with a neurologist no matter how long it has been since the patient had a seizure," advises Judd Jensen, MD, a neurologist who refers patients to the Massachusetts General Hospital Epilepsy Service. He says it happens frequently.
Powell offers the following medication management tips.
Seizures are disabling and may prevent patients and their families from engaging in normal activities. It is particularly important to watch for red flags indicating depression or increased risk of suicide in these patients, Powell says.
He also advises primary care physicians to inquire about and become aware of any specific unmet needs or issues families or caregivers may have because often, these will affect their ability to adequately care for patients with seizures.
Finally, it is important to involve patients in the decision-making process when developing a therapeutic plan. "Otherwise, they will not follow your recommendations," Powell says.