How long have you been seizure free? When should you stop antiseizure meds?

By: Lance Fogan, MD

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Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in a recent Publishers Weekly, New York Times Book Review, and the Los Angeles Times Calendar section. DINGS teaches epilepsy and is now available in eBook, audiobook, and soft and hard cover editions.

An American Academy of Neurology (AAN) Guideline Subcommittee updated a 1996 practice parameter for discontinuing antiseizure medications (ASMs) in seizure-free patients. New practice recommendations for children and for adults have come forth. (1)

The reviewers addressed questions about patients who have been seizure-free at least 12 months and who are still on ASMs. Does stopping ASMs: (1) increase the risk of seizure recurrence, and are there factors that increase the risk for recurrence? (2) increase the risk of status epilepticus (continuous seizures without ceasing)? (3) reduce medication-related side effects? (4) change the risk of death? (5) change any of the above risks based on the speed of withdrawal? and (6) change quality of life?

The important quality of life questions starts with if you cut back medications, we can’t really predict if restarting the same medication will work again—there’s a small chance it won’t. Then other medications may or may not work as well and they may have their own side-effects. Discuss your driving issues: should you cease driving for a while as you discontinue ASMs? How long? Will your state’s DMV make the decision and/or your doctor? Consider seizure occurrence on the job, participation in recreation activities, etc. A discussion regarding recurrence in epilepsy patients who have had successful epilepsy surgery and who are now seizure-free still on ASM medications would be problematic.

The main conclusion is that after two years seizure-free, medication withdrawal can be considered in adults whereas in kids its’ more likely that it could be considered after 18-24 months seizure-free. In considering ASM withdrawal in adults there is no real way to predict outcomes. In kids we can use the EEG, as there are pediatric electroclinical syndromes that could be detected on an EEG and if present makes it unlikely that ASM withdrawal will be successful. Note that half of all epilepsy patients will have a normal EEG at any one time since abnormal epileptiform activity is not continuous. Judgement is the critical component for making decisions.

The AAN subcommittee concluded the risk for seizure recurrence among adults who were seizure-free for two years and who tapered off vs those who did not taper but who stopped suddenly was not statistically different (15% vs 7%). In pediatric cases the difference in seizure recurrence between those who taper off after 18 months of being seizure free vs after 24 months was probably not significant. Only in kids are recommendations for the rate of ASM-withdrawal specific, not in adults: it’s recommended withdrawal in children at a rate no faster than 25% every 10-14 days.

The recommendations serve as talking points between clinicians and their patients and their families. The relationship between ASM withdrawal and the risk of mortality and status epilepticus is not as strong. But if your seizures are frequent and you stop your ASMs there’s a greater risk of your having status epilepticus.

  1. AAN Guideline Subcommittee. Antiseizure Medication Withdrawal in Seizure-Free Patients: Practice Advisory Update Summary. Neurology Dec 7, 2021; Vol 97 (23) 1072-1081.

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