Epilepsy Talk

The perils of discontinuing your epilepsy meds | September 15, 2024

One of the most common questions is “when can I stop taking my meds?”

Especially for those whose seizures have been under good control.

It makes sense. Because if you’re doing well, you start to wonder: “Why do I need these meds anymore”?

This review is organized around four issues:

Does the duration of seizure-freedom influence the risk of recurrence?

Should the epilepsy syndrome influence the decision to stop or continue AEDs?

If daily AEDs are stopped, could intractable epilepsy ensue?

And what’s the risk that someone discontinuing AEDs will die during a recurrence?

Some of the reasons for stopping daily meds include concerns about side-effects…a feeling of well-being…relief from the chore of remembering daily medication…and freedom from the staggering financial burdens.

Most important of all is, an improved quality of life.

Others are seizure-free but choose to continue medication.

They’re happy with stability, concerned about the impact of another seizure, or afraid of losing seizure control or even dying during a recurrence.

The balance between these competing issues is highly individual.

Discontinuing Drug Dangers

There are numerous reasons for not stopping seizure medications:

Multi medications being needed at the same time…
Adverse reactions…
Fear of long-term side-effects…
Age of onset greater than ten-twelve years…
Underlying brain damage…
Known nervous system structural lesion…
Abnormal neurological examination…
EEG abnormalities in the last year…
Partial Epilepsy…
Tonic-Clonic seizures…
Lennox-Gastaut Syndrome…
Juvenile Myoclonic Epilepsy…
Degenerative diseases such as Rasmussen’s Syndrome…
Family history of epilepsy…
And other neurologic abnormalities.

In these high-risk individuals, more than 50% of people will have recurrent seizures with AED withdrawal.

Seizure recurrence most often happens in the early months of AED tapering or discontinuation, with 80% occurring in the first four months and 90% in the first year.

Reemergence of seizure activity can lead to the revocation of a driver license and other privileges that may only be regained after proof of an acceptable seizure-free period. (Which varies from state to state.)

In this situation AED therapy should then be reinstated.

One large study looked at the psychosocial effects of eliminating AEDs in seizure-free patients, and they found these people were willing to accept up to a 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 with seizure drug discontinuation, regretted trying.

When to Taper Medication

The American Academy of Neurology published practice guidelines as to when medications can be successfully withdrawn.

A rapid response to seizure medication…
Infrequent seizures…
Idiopathic epilepsy…
Febrile seizures…
Childhood absence epilepsy…
Those who have a single seizure type…
Low drug levels at the time of seizure drug discontinuation…
Normal neurological examination…
Focal seizures…
Benign Rolandic Epilepsy…
A seizure-free period of more that five years.

There are no randomized controlled trials on the optimal seizure-free interval before beginning withdrawal in adults.

And even if someone meets all of these criteria, there’s still a potential relapse rate of about 39%.

The most prudent advice is that medication should be tapered off gradually, such as a 25% dose reduction every two to four weeks.

Then withdrawal features such as recurrent seizures, and rarer symptoms such as anxiety and restlessness, can usually be avoided.

Barbiturates should be withdrawn slowly for those taking Lamictal (lamotrigine), Tegretol (carbamazepine), Dilantin (phenytoin), Depacon (sodium valproate), or Sabril (vigabatrin). The dose should be reduced by about 10% every two to four weeks.

Benzodiazepines should be reduced more slowly — Ativan (lorazepam), Xanax (diazepam), Klonopin (clonazepam), and Clobazam (Onfi^®) — lowering the dose by about 10% every four to eight weeks.

If a patient is taking a combination of anti-seizure drugs, then only one drug should be withdrawn at a time.

There should be a period of one month between completing withdrawal of one drug and beginning withdrawal of the next.

Discontinuing AEDs

Antiepileptic drugs may not have to be taken for a lifetime.

So, when should patients consider the possibility of stopping their seizure medication?

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 those who have been seizure-free for a minimum of two years.

However, the decision to stop medications is dependent on a number of different risk factors that help decide whether someone can successfully come off of drugs.

The major risk associated with discontinuing AED therapy is seizure recurrence.

In general, approximately 40% of people who stop AEDs, experience a relapse in the first year of stopping medication(s). That number climbs during subsequent years.

Within two years of stopping AEDs, about 80% of people will relapse.

Studies in children show that 65% to 70% of children who are free of seizures for several years on AEDs will remain seizure-free after the drugs are withdrawn.

However, like so much in epilepsy treatment, the risks vary between individuals and between different types of epilepsy.

One study showed that 68% of adults who had been seizure-free for just two years before stopping medication, were able to do so without having more seizures. (Although five years is often the benchmark.)

And 75% of adults could successfully discontinue medication if they had been seizure-free for three years.

In general, the adult who will have the best chance of successful withdrawal is the person who has only one type of primary generalized seizures…is younger than thirty years old…and has seizures that are promptly controlled with medication…

There are also many psychological reasons and potential benefits for discontinuing medications…

For example, many studies have shown that patients are unhappy with their medications.

Often it’s the daily medication side-effects, such as cognitive slowing, that erode a person’s quality of life, which contribute to dissatisfaction.

But as you know from the data above, discontinuation can result in potentially grave risks.

It would seem that just restarting therapy would return the patient to remission, but regaining seizure control may not be so easy…or fast.

Often, higher doses and even additional medications may be required to return the patient to a seizure-free state.

There are other parts of the treatment that need to be taken into consideration.

Seizures that result from suddenly stopping medication can be very serious and can lead to status epilepticus.

There is some evidence that uncontrolled seizures trigger changes in neurons that can make it more difficult to treat the seizures in the future.

Furthermore, there are also two major risks in discontinuing treatment — a tiny risk that the epilepsy will not be controlled again, becoming intractable, and a tiny risk of death during a recurrence.

Please. Do not assume the role of doctor and do not make the decision independently.

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Resources:

https://www.webmd.com/epilepsy/guide/stopping-your-epilepsy-treatment#1

https://www.epilepsy.com/treatment/medicines/stopping-medication

https://www.epilepsy.com/what-is-epilepsy/seizure-triggers/missed-medicines

https://tidsskriftet.no/en/2017/03/klinisk-oversikt/discontinuation-antiepileptic-drugs-seizure-free-patients-when-and-how

http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2008.01923.x/pdf

http://comtecmed.com/cony/2013/Uploads/Editor/Ozkara.pdf

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