One of the most commonly asked question by patients is “when can I discontinue taking my medications?” This particular question is often asked by individuals taking antiseizure drugs who have been under good control. Because these individuals are doing well, many start to ponder the rationale for them to continue taking their medication. They often cite a lot of different reasons for considering stopping seizure medications. These reasons include potential risk to an unborn child baby if a pregnant mother is taking medication, high costs, inconvenience of taking medication, and lastly, the fear of long-term side-effects. Curiously, in one large study that looked at the psychosocial ramifications of eliminating seizure medications in seizure-free patients, patients and families were willing to accept up to 75% risk of a seizure recurrence given a 25% chance for success. A similar study evaluating the psychological aspects of stopping seizure drugs found that only 8% of patients who failed a trial of seizure drug discontinuation regretted trying. This study also found those who successfully discontinued medications scored significantly higher on satisfaction scales compared to those who remained seizure-free on medications.
So, when should patients consider the possibility of stopping their seizure medication? Oftentimes, someone has to be seizure-free for a minimum between 2 years and 5 years before a neurologist is willing to accept the concept of discontinuing medications. Physicians and other healthcare professionals are often somewhat loathe to consider eliminating seizure drugs because they fear the risk of potentially serious consequences such as traumatic injuries and even death in some rare instances.
How often can seizure medications be successfully stopped? In a series of various studies, seizure drugs could effectively be withdrawn in 24- 60% of patients with epilepsy who are seizure-free for a minimum of 2 years. However, the decision to stop medications is dependent on a number of different risk factors that help to shape whether a particular individual can successfully come off of drugs.
Risk factors that make it more likely that a patient is likely to come off of medication include an age of seizure onset greater than 2 years and less than 11 or 12 years. Furthermore a cause of epilepsy that is not known, a normal neurological examination, normal IQ, childhood absence epilepsy, benign rolandic epilepsy, a rapid response to seizure medication, infrequent seizures, low drug levels at the time of seizure drug discontinuation, and a seizure-free interval much greater than 2 years are positive predictors of future success. Conversely, variables that make it less likely for one to be successful to stop their medications include an age of onset greater than 10-12 years, an overt or obvious cause for the patient’s epilepsy, mental retardation, abnormal neurological examination, juvenile myoclonic epilepsy, partial epilepsy, a poor response to medication at the onset, more than one medication being taken at the time of seizure drug discontinuation, abnormalities on the EEG, and a family history of epilepsy.
EEG may predict whether someone will have seizure recurrence after stopping their drugs. It has been suggested that an EEG prior to stopping the medication should be performed in order to assess if there are any neurological abnormalities on the recording. If such findings are noted, then one should not discontinue the medication. Moreover, an EEG should be taken after the drugs have been discontinued to see if there is a return of any epileptiform abnormality. Nevertheless, even in the setting of a normal EEG after successful elimination of medication, one has to assess whether there is an underlying syndrome that makes seizures more likely to occur, and this may be even more important than whether an individual has a normal EEG at the time of discontinuation of the medications.
The American Academy of Neurology published practice guidelines as to when medications can be successfully withdrawn. Individuals who are seizure-free anywhere from 2-5 years are potential candidates to have seizure drugs stopped. Individuals who have a single seizure type, have a normal neurological examination and IQ are likely to respond to successful termination of medication. Even if an individual meets all of these criteria, there is still a potential relapse rate of about 39%. Certain syndromes are more likely to have potential benefit for withdrawal including individuals with benign rolandic epilepsy with centrotemporal spikes, febrile seizures, provoked seizures secondary to either alcoholism or sleep-deprivation, and those who have been seizure-free for more that 5 years. Those situations where people are less likely to have a good outcome include those who have Lennox-Gastaut Syndrome, juvenile myoclonic epilepsy, a history of trauma causing the epilepsy, and degenerative diseases such as Rasmussen’s Syndrome.
If you and your physician feel that medication can be successfully discontinued, abrupt discontinuation is not advisable. All medications, if they are to be stopped, should be done under the guidance and full agreement of your treating physician. A taper of medication is always preferred rather than abrupt discontinuation. One should never, ever stop medications that are in the benzodiazepine or barbiturate family without medical guidance as these can precipitate seizures, even in patients who do not have a seizure disorder. It is also essential to obtain an EEG prior to stopping medication. It is only with the safe guidance of a physician or healthcare professional that one can successfully eliminate their seizure drugs.
The Epilepsy Therapy Project supports and funds the creation of novel treatments that will hopefully bring a cure to epilepsy. As such, the organization works to find innovative treatments that can be brought to market sooner than later. We hope, by the creation of innovative treatments that the issue of discontinuing seizure medication become a much more common occurrence in the future for patients with epilepsy.