The State of Epilepsy Treatment in America: One Doctor’s Viewpoint

This is the first in a series of articles addressing the state of epilepsy in the United States today. Dr. Alan Ettinger spoke with EpilepsyUSA Managing Editor Lisa Boylan about a variety of topics related to epilepsy treatment. He is Chief of the Division of EEG and Epilepsy at the North Shore-LIJ Comprehensive Epilepsy Centers, and the Cushing Institutes of Neuroscience, in New Hyde Park and Manhasset, New York. He is Associate Professor in the Department of Clinical Neurology at the Albert Einstein College of Medicine. He also serves on the Foundation’s Professional Advisory Board on the Quality of Life committee.

EpilepsyUSA: Dr. Ettinger, how has the diagnosis of epilepsy improved in the last five years?

Dr. Ettinger: There are a wide variety of conditions that can be easily mistaken for seizures. Over the last 5 to 10 years, I believe there has been a widespread expansion of the use of video EEG technology. This can greatly assist a clinician who is struggling to determine the nature of an episode or to define the nature of a seizure disorder.

Video EEG monitoring is continuous monitoring of brainwave activity associated with capturing on video (nowadays in digital format) the clinical behaviors that accompany these brainwaves. This helps immensely in deciding what kind of condition the clinician is dealing with. Many times, the episodes of concern will repeat themselves during the video-EEG recording, therefore the doctor will be able to study second-by-second what the EEG and clinical behaviors look like.

EpilepsyUSA: So it’s helpful to have both the EEG results and also the visual of what’s happening to the patient?

Dr. Ettinger: Exactly. And even if the specific episode has not been captured, with very prolonged EEG testing, one can often find important abnormalities in the EEG background, which would not be likely to appear in the much briefer routine EEG.

I think the expansion of video EEG monitoring units—very ubiquitously now—across the country has helped improve diagnosis. Being able to capture the seizures for study also helps the clinician to better understand the nature of the seizure disorder; this can lead to a better treatment plan.

EpilepsyUSA: In what other ways has the diagnosis of epilepsy improved?

Dr. Ettinger: I think clinicians are becoming much more sophisticated about the terminology, diagnosis and treatment of epilepsy. The devoted efforts of foundations like the Epilepsy Foundation and the American Epilepsy Society have heightened awareness of neurologists and non-neurologists to the complexities of epilepsy.

EpilepsyUSA: Has heightened awareness also helped healthcare providers to know when they need to refer a patient to an even more specialized physician?

Dr. Ettinger: That’s an excellent question; timely referrals to specialized epilepsy centers remains a bit of a concern. Recent data has validated what many of us believed, which is that if an individual has seizures that are uncontrolled, despite at least two good trials of antiepileptic drugs, the chances that a person will become seizure free trying the third, the fourth, or the fifth drug are very slim. So unfortunately, we still see many clinicians spending many years trying one medication after another before considering referral to specialized centers. This is unfortunate since many valuable years can be lost and potential curative interventions like epilepsy surgery may be delayed. Worse yet, some clinicians may tell their patients that there’s frankly nothing else that can be done, or that the patient will have to endure unpleasant medication side effects, rather than seeking alternatives with a consultation by the specialist. By educating the public, however, these kinds of problems are less likely to occur.

EpilepsyUSA: What promising new treatments do you see on the horizon, say in 5 to 10 years?

Dr. Ettinger: I think some of the exciting work that’s being performed in epilepsy treatment research concerns the topic of neural or electrical stimulation in the attempt to stop seizures. While many individuals will have their seizures well controlled by medications, for those individuals who continue to have seizures, an epilepsy surgery evaluation is often advised. The most common type of epilepsy surgery is designed to locate where the seizures are coming from in the brain and, if possible, to remove that dysfunctional area.

However, there are still many individuals who will not be good candidates for surgery because their seizures may not occur from one specific area of the brain that can be removed. Sometimes we have difficulty pinpointing exactly where those seizures are coming from.

It has been noted for a long time now that stimulating certain parts of the brain, for example, a deep structure of the brain called the thalamus, may have potential benefits in stopping seizures from developing or stopping the progression of a seizure. There are many different strategies currently being tested. Some stimulators give small currents of electrical stimulation at regular intervals—whether a person is or isn’t having a seizure at that very time—trying to prevent more seizures from occurring. Other strategies being tested are more “reactive” in that electrodes are able to pick up that a certain abnormal electrical activity is developing; the device then responds by sending an electrical signal that may stop the seizure from progressing.

There are many unknowns in this area, in that we need to refine our understanding of what are the best structures to apply the stimulation to. We also need to understand what the best stimulation parameters are.

Another promising area is medications. There are two main categories. Some of the medications “in the pipeline” are those that are new and improved “sons” of currently available drugs. For example, some drugs may be potentially very helpful against seizures, but when you raise the dosage, intolerable side effects develop. One strategy therefore, is to develop a derivative of that drug, one that is more potent and yet has less severe side effects.

Another strategy is to look for compounds that have completely different mechanisms of action; ones that are unrelated to specific compounds that are currently available. We still need to make greater strides in finding drugs with novel mechanisms of action that will enable us to control seizures with very minimal side effects.

A third category that we need to explore further is the development of agents that reduce the chances of developing epilepsy in the first place, after a person incurs an insult to the brain. In other words, drugs that are not antiepileptic, but are antiepileptogenic.

EpilepsyUSA: What is the distinction?

Dr. Ettinger: Whereas antiepileptic drugs are used to try to control seizures that are symptoms of an existing epileptic disorder—antiepileptogenic drugs are neuroprotective drugs that protect the brain and nerve cells from developing seizures in the first place (such as may occur after significant head injury, a stroke or a bleeding event in the brain).

EpilepsyUSA: Do those kinds of drugs exist now?

Dr. Ettinger: There is soft evidence for several agents currently in use, but we need to make further strides in this area.

Another aspect of epilepsy treatment is, for those individuals who are evaluated for potential epilepsy surgery, we are improving our ability to spot abnormalities on pictures of the brain. Sometimes the EEG—the brainwave test—does not provide us enough information to be sure of where the seizures are coming from. If we can find subtle structural abnormalities on pictures of the brain, we are much more likely to be able to offer epilepsy surgery. We are constantly improving the technology associated with these brain pictures, thereby improving our detection of these subtle abnormalities. This can lead to more and better surgical cures for uncontrolled seizures.

EpilepsyUSA: What do you see in terms of improving the interaction between doctors and patients in order to make treatment and diagnosis more effective?

Dr. Ettinger: There are many challenges that remain in this regard, in part because healthcare providers are being asked each year to see more and more patients in shorter amounts of time. This places additional challenges on the doctor and the patient to comprehensively cover all the aspects of diagnosis and treatment that need to be discussed during a routine office visit. Since it is unlikely that this problem is going to go away anytime soon, patients can still help this problem by taking the time to prepare information and prior medical records before stepping into the doctor’s office.

EpilepsyUSA: What kinds of information?

Dr. Ettinger: Information about their seizures; what the seizures are like; how often they occur; what they look like; what have observers seen; what it feels like. Information about the medical conditions that the person has giving rise to the seizures, what is the diagnosis, what was the treatment, and how was it evaluated? These are common sense questions but it takes effort to organize this information for the doctor.

As a physician, who has been very involved with the Epilepsy Foundation as well as a number of patient advocacy societies, I have been stressing how essential it is for patients to take an active role in their healthcare. This is one important element. For example, at our epilepsy center [The Comprehensive Epilepsy Center, Long Island Jewish Medical Center, www.epilepsylongisland.com], our patients complete a detailed seven page form that they can access from our Web site before even arriving at our office.

Another strategy is a checklist of items that doctors and patients should discuss on routine office visits. It’s very important for physicians to remember to review side effects of medications, precautions before undergoing tests, how our patients are coping with epilepsy and issues related to quality of life.

Another important advance in our dealing with epilepsy is the recognition of the importance of assessing for comorbid mood disorder symptoms among patients with epilepsy. Depression and anxiety are very common in epilepsy. We are making slow but incremental progress in educating clinicians to emphasize this in their routine evaluations of patients with epilepsy. I also believe that we are making progress in removing the stigma of having depression with epilepsy, in part because clinicians and patients are beginning to understand that depression is strongly related to the biological underpinnings of epilepsy.

EpilepsyUSA: So is depression more complicated than just feeling bad about having epilepsy?

Dr. Ettinger: Right. In other words, a simple notion would be that depression is just a reaction to having a bad chronic disorder. But in fact depression is likely strongly associated with biological conditions that give rise to seizures and can independently bring about depression. Other mechanisms for depression include medication effects and the seizure themselves. This is important to emphasize so that patients don’t feel that acknowledging depression symptoms is a sign of weakness or deserves a feeling of shame. Depression is eminently treatable but treatment depends first upon recognizing it.

EpilepsyUSA: What medications, surgeries or alternative treatments are you keeping an eye on for the near future?

Dr. Ettinger: I think that one of the exciting areas that I’m really keeping an eye on is the neurostimulation treatments that may offer additional hope of substantial treatment of seizures that cannot be eliminated through routine medication therapies or focal epilepsy surgeries.

EpilepsyUSA: What is the primary advantage of device-based therapies versus pharmacological therapies?

Dr. Ettinger: I think the advantage is that it offers an alternative when the other therapies are not working adequately.

EpilepsyUSA: So there is hope on the horizon?

Dr. Ettinger: This is a very exciting time with tremendous hope for great breakthroughs just over the horizon.