When to stop medications (discontinuation)
• Never if a patients is still having seizures
• How long after a person with epilepsy has been seizure-free? There is no clear, right or wrong answer here. There are many factors to consider:
- Type of epilepsy: some epilepsies (like Juvenile myoclonic epilepsy) are very well controlled with medications, however, once the medications are stopped, seizures tend to come back.
- In general, we wait for 2 to 5 years of seizure freedom (depending on the epilepsy specialist). An exception to this rule is after epilepsy surgery because if a patient is seizure free after surgery, medication may be tapered off after one year.
- Quality of life: if a patient is seizure free, having no side effects from the medications and is fearful of having seizures again, he/she may stay on the medication for an extended time or indefinitely. Sometimes this decision is made because the patient is fearful of having a seizure and secondarily losing driving privileges or a job. On the other hand, if the patient is having side effects from the medications or prefers to be on no medications, then discontinuation is worked towards. A typical example of this second case is women that want to get pregnant and prefer to be on no medications to avoid potential damage to their babies.
• How fast do we make changes: always we slow! Baby steps, unless there is a reaction to the medication and we need to do it faster. In that case, the person may need to be admitted to the hospital.
• How likely is it that a patient will have a seizure after discontinuation? It depends on the type of epilepsy. In general there is a 20-30 % chance that seizures could come back.
• What to avoid when going through discontinuation? It is better to avoid driving or activities that could put the person at risk, since the chances of seizures recurring are higher immediately after discontinuation. It is also important to avoid triggers to seizures (described in the previous chapter) such as, sleep deprivation, excessive stress, etc.