Medical practice is based as much on your doctor’s experience as it is guesswork. You probably have already come to this conclusion. Teamwork―the collaboration between you (the patient), and your epilepsy-treating physician—is how many decisions are made about whether treatment should be started and, if so, when? Other considerations include the kind of treatment you should receive, how to adjust treatment, and when to stop it?
Treatment options will vary from patient to patient. Variables to consider include: age, gender, pregnancy considerations, allergies, other illnesses and conditions, and whether the patient needs to drive. For example, a middle-aged person who has had epilepsy since his or her teens has suffered a seizure only when antiepileptic drug blood levels became low and now has been seizure-free for eight years despite occasional low drug blood levels can the anti-seizure medication(s) be stopped? This is a reasonable question: we should not take any medication that’s not indicated. What if the brain scan and EEG are normal? Would this mean the person will remain seizure-free once the medication is stopped? Are the drug levels, despite being low, still protective for that person and if the medication is stopped will seizures recur? It is common for the EEG to be normal in epilepsy. This occurs in up to half of patients because epileptiform activity may not happen during the 60-90 minutes of recording in the EEG laboratory. So, normal EEGs do not discount an epilepsy diagnosis. Consequently, the diagnosis of epilepsy is a clinical one, based on the history of what happens to the patient and not based on any laboratory test.
Not enough data is available to accurately counsel patients about when and if antiepilepsy medications can safely be discontinued. If a patient wants to taper off medications after being seizure-free for many years, and the EEG is normal, the advice we can give our patient is, at best, really only guesswork.
Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.