Unlike other health conditions, there is no formula for how long someone should take anti-seizure drugs. Some people need to take seizure medicines for the rest of their life. Others may stop after being seizure-free for a time. Epilepsy treatment is as unique as every person.
People often have a strong desire to at least try stopping their seizure drugs or switching to a new drug due to their side effects. Drowsiness, fatigue, and attention problems can have a negative impact on school, work, and home life.1
The option to stop taking anti-seizure drugs should be discussed thoroughly with your neurologist. Weighing the risks and benefits can be complicated. There are many factors that go into this choice.
You should never make the decision to stop anti-seizure drugs by yourself. If your doctor thinks it is safe and reasonable for you to stop taking anti-seizure drugs, you will need to be closely monitored during the process. Often, you are slowly weaned off these drugs over days or weeks. Keep in mind, your doctor may recommend stopping only some or no anti-seizure drugs at all.
Criteria for stopping epilepsy medication
There are no guarantees that you will remain seizure-free if you stop taking your epilepsy medicine. Doctors cannot fully predict who will have seizures again. But they may have a sense of your risk based on your epilepsy history. For example, a person has a better chance of remaining seizure-free if they:1,2
- Had few seizures before taking anti-seizure drugs
- Had seizures easily controlled with 1 type of medicine
- Have normal neurological exam, EEG, and MRI/CT scan results
Studies show seizures are most likely to recur within 6 to 9 months of stopping anti-seizure drugs. After 2 years, the risk of recurring seizures declines. Recurrence happens in up to half of adults and 3 out of 10 children.1
Most doctors will not consider lowering your dose or stopping seizure medicines until you have been seizure-free for 2 to 4 years. People who had only 1 seizure may be a candidate to stop if they have been seizure-free for 6 to 12 months.2
Risk factors for recurring seizures
Stopping anti-seizure drugs is not an exact science. However, doctors know that some people are poor candidates to go off their epilepsy medicines. These people include those who were younger when their epilepsy began and those who have:1
- Abnormal neurological exams, EEG results, or MRI scans
- Multiple types of seizures
- Tonic-clonic seizures
- Had epilepsy for many years
- Had a high number of seizures
- Taken multiple anti-seizure drugs
- Certain refractory epilepsy syndromes
People who have abnormal EEG results after stopping their anti-seizure drugs are at high risk of seizures.1
Adults who have been seizure-free following epilepsy surgery may be good candidates to stop taking these drugs.1
Some childhood epilepsies are known to have higher and lower risks of seizure relapse. For example, juvenile myoclonic epilepsy has a high risk of seizures returning. Children with centrotemporal spikes (benign Rolandic epilepsy) rarely have seizures after age 16.1,2
Questions to consider before stopping anti-seizure drugs
You and your doctor will need to consider several risks related to stopping anti-seizure drugs. Questions to ask include:1,2
- Are the possible results something you can manage?
- What happens if you lose your driver’s license?
- What are the chances of getting injured?
- How will your quality of life be affected by stopping?
- Is there a risk of developing drug-resistant epilepsy by going on and off seizure drugs?
- What are the risks of sudden unexpected death in epilepsy (SUDEP) or status epilepticus?
- How long will it take to taper off the drug?
Weaning off epilepsy medication
No one should stop taking anti-seizure medicines suddenly. This can result in withdrawal seizures or status epilepticus. This is especially true for drugs known as benzodiazepines and barbiturates. Tapering off drugs can take as little as days and as long as months. You may need to avoid driving or other potentially dangerous activities during the taper phase.1