Epilepsy Talk

The Perils of Discontinuing Your Meds | July 9, 2021

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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  1. Reblogged this on Disablities & Mental Health Issues.


    Comment by Kenneth — July 9, 2021 @ 9:57 AM

  2. Discontinuing meds would be like not drinking any more water because you’re already hydrated.

    Liked by 1 person

    Comment by HoDo — July 9, 2021 @ 10:18 AM

  3. I had been told that medicines didn’t work for me and thus I should have surgery. So after a successful surgery, how was I not to assume that I could drop those meds that “never worked”? Without offering any counsel, my epileptologist allowed me to drop the first med less than two years after surgery and the last med within two and a half years. Thus I was astonished to have a seizure three weeks after ending my meds and to be told that I needed to resume medication. But I thought it never worked?! Well, that’s right. The last medicine I dropped never did work again but just gave me worse side effects than ever before. Finally we switched meds, and now I’ve been seizure-free again for a couple of years. There can certainly be perils to discontinuing seizure meds, even when doctors give us the blessing to do so.

    Liked by 2 people

    Comment by Deb — July 9, 2021 @ 1:10 PM

  4. Considering the unpredictable triggers of seizures, in the end the question seems that does the benefits of staying with the AEDs outweigh the risks of stopping the AEDs?

    Liked by 1 person

    Comment by Gerrie — July 9, 2021 @ 2:47 PM

  5. You might say “better the devil you know, than the devil you don’t know.”


    Comment by Phylis Feiner Johnson — July 9, 2021 @ 3:29 PM

  6. What IS worse than the perils of stopping all drugs, is having to start them & take them for years before you have any idea what LIFE is starting to become, when you realize as a KID I am taking pills & have NO IDEA WHY you are taking them. That was it for me when drug taking started at 7 MONTHS OLD, I may had been 3 years old, I remember where I was living, when my mom told me WHY I was taking the drugs which then was LIQUID MEDICINE, as the pills started after 9 years old from my 1st ever neurologist I saw in 1969. So AED’s of any form ruins all brain chemistry long before the brain ever has a chance to develop itself as a powerful organ it can be, BEFORE all AED’s invades normal brain chemistry to make THAT & the other brain chemistry all ABNORMAL BRAIN CHEMISTRY because the AED’s of today & what I had in 1961, will never end seizures as we WISH FOR IT AND WANT IT TO HAPPEN. Seizures has happened to others before my life started, and for over 2000 years there’s never been A DRUG to stop all seizures, as there is MORE MONEY to control symptoms, than to end the seizures, and there is where we must SHOUT OUT TO THEM AT BOG PHARMA, but they will only laugh at us & have deaf ears to our voices, which is WHY as I PRAY for the rapture of Jesus Christ to happen like NOW. Remember that everyone is accountable for only 1 thing, & THAT is their own salvation & believe in Jesus, as this world & the seizure life will never be forever here for me. This is why 1 of not my favorite verse of the Bible is Psalm 32:8,,I will instruct thee and teach thee n the way that thou shall go. I will guide you with my eye upon you. Also,, Psalm 118:8 It is better to have trust in the Lord, than to have confidence in man.<< THAT IS the center verse of the BIBLE as there are 1187 verses BEFORE & AFTER Psalm 118:8 No person can design that or make it up. All to say that seizures, has made me more depended on God than on drugs, that do not work. This isn't any religious post, but a REALITY FACT of how all things are possible with God, no matter WHAT or HOW you decide what happens with your choices & decisions you make, if you give all to God as he is in control of it all.

    Liked by 2 people

    Comment by James D — July 9, 2021 @ 7:58 PM

  7. Would any doctor allow u to go off ur medication? I would think they could be liable if something happens to u, so why would they take that chance?

    Liked by 1 person

    Comment by Zolt — July 10, 2021 @ 10:11 AM

    • Zolt,,, When prescribing or withdrawing the medications, don’t you think Doctors should be more concerned with the wellbeing of their patients than potential liability?
      Why would the Doctors financial security become far more important than the wellbeing of the patients who entrusted their safety to the Doctors who are NOT responsible enough to decide on prescribing or withdrawing the medications, according to the patients medica needs, seeking remedy to medical hardships?
      What’s the point of going to the Doctors who are more interested in their financial security than saving the lives of the patients who entrusted their wellbeing on the Doctors?
      When & where do you draw the line between the integrity of the doctors & the safety of the patients?

      Liked by 1 person

      Comment by Gerrie — July 10, 2021 @ 6:10 PM

  8. You could certainly do it on your own — as so many people do when they’re fed up with their meds — and not wait for his/her permission.


    Comment by Phylis Feiner Johnson — July 10, 2021 @ 11:49 AM

  9. When I went off my first med, I only did it because the doc said I could. When he said six months later we should try #2, I agreed. When he asked when I wanted to try the last med, I told him to wait until I say so. Four and a half years later I heard Dilantin was causing problems so I said I was ready to try going off of it. This Thursday is 15 years since I took my last med.

    Liked by 1 person

    Comment by Ed Lugge — July 13, 2021 @ 4:31 PM

  10. Good for you. What a milestone! But it’s also good that you titrated down slowly.


    Comment by Phylis Feiner Johnson — July 13, 2021 @ 4:48 PM

  11. Phylis Feiner Johnson, what is to be done if someone’s state of mind is disturbed by any Epilepsy medication? What if medication is effective but the cost is mental health problems?

    Liked by 1 person

    Comment by ragnarsbhut — July 28, 2021 @ 11:50 PM

  12. I think that either you have to explore other drugs, get a second opinion from another neuro, or perhaps in some instances, seek counseling.

    I know that I have been in therapy for eons and it’s done me a world of good.


    Comment by Phylis Feiner Johnson — July 29, 2021 @ 9:13 AM

    • Phylis Feiner Johnson, I get the skepticism of their use, however, what would it mean if people tolerate more natural means to treat Epilepsy than conventional medicine?

      Liked by 2 people

      Comment by ragnarsbhut — July 29, 2021 @ 1:15 PM

      • I think, to be fair, a combination of the two is needed.

        Liked by 2 people

        Comment by Phylis Feiner Johnson — July 29, 2021 @ 1:17 PM

      • Here is an example: Let’s assume that Bacopa or Valerian Root are reported to conflict with certain Epilepsy medications, however, the person who takes both and the regular prescribed medication can tolerate them equally. Does that mean that the data is bad or just due to a person’s genetics?

        Liked by 2 people

        Comment by ragnarsbhut — July 29, 2021 @ 1:32 PM

  13. Everyone’s body chemistry is different.

    Liked by 2 people

    Comment by Phylis Feiner Johnson — July 29, 2021 @ 1:38 PM

  14. Phylis Feiner Johnson, I get the fact that the risks of being without Epilepsy medication is not worth it. The thing that confuses me is why no warning labels say that there is a risk of Osteoporosis and some people have to learn that the hard way.

    Liked by 1 person

    Comment by ragnarsbhut — October 16, 2022 @ 12:01 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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