Epilepsy Talk

The Perils of Discontinuing Your Meds | February 21, 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. I’m afraid I don’t understand why they wouldn’t start up again anyway? Aren’t the meds controlling them? It seems to me like you’d be seizure free bc they’re working. I mean the meds certainly don’t heal you. So how exactly does it work when you stop them but don’t relapse? 🤔🤔

    Liked by 2 people

    Comment by Hetty Eliot — February 21, 2021 @ 12:38 PM

    • It depends on what caused your seizures in the first place. If it is a brain injury, that is probably going to necessitate permanent meds but, if your seizures were caused by a metabolic disfunction, that can be fixed with a proper diet and other lifestyle changes like exercise. Once you have fixed the underlying problem, the meds become useless.

      Liked by 3 people

      Comment by paleobird — February 21, 2021 @ 1:54 PM

    • Hetty, all meds do to my knowledge, is to control seizures. So, like you, I agree. When you go off your meds, you’re taking a huge chance.

      Some lucky folks don’t get more seizures, as noted above. But as you can see, some get rebound seizures big time.

      I’d rather be in the cautious category.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 21, 2021 @ 2:41 PM

  2. You are right when you said, “Please. Do not assume the role of doctor and do not make the decision independently.” The only problem is that too often doctors just will not listen to any possibility of taking you off of meds. I have been threatened with the suspension of my driver’s license if I even tried to titrate back. I have tried multiple neurologists and the answer is always the same. Don’t rock the boat.
    I have successfully titrated down off of 1000mgs a day of Valproic Acid and am taking a break before working on the 250mgs of Phenobarbital I still take. So I’m 4/5ths of the way there if you count by grams. Apparently Pheno has a longer half-life and is trickier to go through withdrawals being a CNS depressant.
    So, it is a long and precarious project that I agree is better done with the help of a neurologist but it is possible to do it on your own when you don’t have any other choice.

    Liked by 2 people

    Comment by paleobird — February 21, 2021 @ 1:45 PM

    • Kudos to you, paleobird. I’ve got to say that I’m much too chicken to try. Days without my meds have been a nightmare. But of course, that’s when I suddenly don’t take the whole lot.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 21, 2021 @ 2:47 PM

  3. All I know is this – if you’ve been relying on meds to control your seizures for a long time, you don’t want to let go. I had a successful surgery. I had a clean eeg. I let go of two of my meds at six and twelve months after surgery and was still in control of seizures but I wanted to hang on to the last one as a security blanket. If you’ve had a problem for 40 years, it’s hard to feel it’s not a problem anymore.

    I needed a push and that push came when they told me my last med was causing other problems like Vitamin D level. Even then I was ready to try another med but then I thought it’s ME saying I need it. The doctor’s been saying I can come off of it so why don’t I try?

    I finally called and said I wanted to try coming off meds. He told me I had to give up driving during this time which I didn’t like but fortunately, I had a few friends who helped me out before and I knew they’d help me out anytime I needed it. I eventually made it to that last day.

    A lot of dates I’ll always remember are:
    July 8, 2000 – my car accident that prompted me to have surgery
    November 5, 2000 – my last seizure
    December 11, 2000 – my surgery
    July 15, 2006 – the day I took my last pill

    Epilepsy comes with things you think about and it depresses you so it’s important to remember the days when you got a break.

    Liked by 2 people

    Comment by Ed Lugge — February 21, 2021 @ 1:46 PM

  4. Me, too. Sometimes I feel like those last meds are a security blanket. Except the ones for depression and anxiety. Those, I don’t want to mess around with.

    And Ed, congratulations again. You seem to have put your last demon behind you.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — February 21, 2021 @ 2:50 PM

  5. all medications have too many side effects; working differently on everyone. Imagine your ‘ego’ being deflated when the Dr. increases the ones you’re getting the most side effects from………….if only they had to experience the effects you are going through

    Liked by 2 people

    Comment by Karen — February 21, 2021 @ 3:24 PM

  6. “IF” is the operative word. 😦

    Liked by 1 person

    Comment by Phylis Feiner Johnson — February 21, 2021 @ 3:28 PM

  7. This is an important topicto address.
    Thank you for your lovely review of our book.
    I just saw it. This shows how inept I am at promotion and marketing.
    I have been busy making Covid masks to save people from the virus and its variants.
    Email me an address if you would like several. You are important. I want you to be safe. Include your favorite color.
    See my blog posts for samples.
    Thanks again for taking the time to read and review our book.

    Liked by 2 people

    Comment by Flower Roberts — February 21, 2021 @ 5:41 PM

    • Flower, have you publicized your book at all? I couldn’t find it on your website or on Amazon.

      It’s a lovely book and I think it’s worthy of public notice. Perhaps you could describe it and place a link for it on the various epilepsy Facebook sites.

      As for the masks, thank you for your generous offer. I’ve been building a “wardrobe” of masks. I figure if we’re stuck wearing them for the foreseeable future, they might as well be pretty. As I’m sure yours are!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 22, 2021 @ 9:47 AM

    • Gosh only if I can get to you those “e-books”!! Lol 😂 I like the ones that I can just listen to being red to me probably because of my upbringing (it was mostly pay attention we will show and tell you why and then you show us and tell us why as well 😊. My culture I guess 😘), but yes I still read obviously 🧐😘

      Liked by 2 people

      Comment by Kathy S.B — March 7, 2021 @ 11:04 AM

    • You know Flower my husband got me a new lap top for Christmas and honestly I look at it and think “REALLY? How do I work you now?!! Lol and the passwords to everything unreal I could write out a password phone book! Or I would seriously get one I promise 😘. I hope the sell really good for you my friend 😊🙏🏼🦬🦅💕

      Liked by 1 person

      Comment by Kathy S.B — March 7, 2021 @ 11:08 AM

  8. I was fooled by a Christian preacher, healer, God had healed me, stopped my meds, a day later in hospital with status epilepticus so bad thy had to sedate me for 5 days, and it took me weeks to recover, don’t do that unless your doctors have suggested it and are supervising you

    Liked by 2 people

    Comment by Gail Barry — February 22, 2021 @ 3:02 AM

  9. Holy cow. When does a preacher become a doctor? He might be a symbol of the almighty, but he sure doesn’t have his M.D. license.

    I’m so sorry, Gail.


    Comment by Phylis Feiner Johnson — February 22, 2021 @ 9:50 AM

  10. Thanks for posting this. After being seizure free for four years, my neurologist has discussed taking me off of my three meds because I am on a VNS. I have been very reluctant given my history. This reaffirms my gut feeling. As always, you are my guru. I don’t want to take a chance after all of my success.

    Liked by 2 people

    Comment by Mary Ellen Gambon — February 22, 2021 @ 9:52 AM

    • Thanks for the compliment. And as always, I do agree with you Mary Ellen. If it ain’t broke, don’t fix it.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 22, 2021 @ 9:56 AM

      • I apologize but that’s until your left with no choice but to change them because of the long term effects of the medications you’ve always been on.

        Liked by 1 person

        Comment by Kathy S.B — March 7, 2021 @ 11:18 AM

    • I also have a VNS have had a few little ones then one drop attack recently I agree with you, let’s not take any chances. I’d rather take meds then feel really uncomfortable. Leon Chavarria

      Liked by 2 people

      Comment by Leon Chavarria — February 22, 2021 @ 1:05 PM

      • Thank you for your support. People cannot make assumptions about the case history of others. We do the best we can with professional guidance and lived experience.

        Liked by 2 people

        Comment by Mary Ellen Gambon — March 7, 2021 @ 11:37 AM

  11. The sad part is sometimes those medications that worked so well for decades can cause other unwanted problems that can make things worse too!! For example I now have “SAIDH” caused front the brand name “Tegretol cr”. So my neurologist is switching me to more clobazam and slowly taking me off the tegretol cr, but I am still on the “Dilantin” too. I’m pretty good at sucking it up but I don’t even remember being brought to the hospital by my husband!! That’s scarey trust me. Turned out the tegretol cr (after 32 years) is now causing “hyponatremia” or low sodium which is the worst thing ever almost!! And very scarey to your family and friends too!!

    Liked by 1 person

    Comment by Kathy S.B — March 7, 2021 @ 11:17 AM

    • Are there other combinations available? Or is this the only thing that works for you, Kathy?

      Liked by 1 person

      Comment by Phylis Feiner Johnson — March 7, 2021 @ 11:38 AM

      • I don’t know. I just REALLY HOPE/PRAY they find something else that works better fast!!


        Comment by Kathy S.B — March 7, 2021 @ 1:54 PM

  12. I don’t know, but I sure hope and PRAY 🙏🏼🦬🦅😇🙏🏼 they hurry up and figure out something fast!!!!!!! They really should have changed this medication a long time ago though. I think what the epitologists and neurologist seem to have a hard time believing or hearing is the words “I am allergic to generic medications!! So please do not give me generic medications at all!!”. But I’m kind of feeling like a bit of a “pin cushion lab rat”!!!!!!!

    Liked by 1 person

    Comment by Kathy S.B — March 7, 2021 @ 1:41 PM

  13. But with all these meds, you’d think they could come up with some other alternatives.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — March 7, 2021 @ 1:50 PM

  14. I KNOW!! Even the lyrica they had me on helped for a little while but apparently even it was generic which explains why it didn’t quite work either!! Oddly I did mention “Lamictal”, but that’s why they gave me the lyrica. I just wish they would hurry because I swear no human can live off of one litre of fluids a days. I can’t even be active with that and all of the clobazam and tegretol and Dilantin I’m on now!! Nevermind move. I hate to say it but once again “hormones” I swear are playing a good portion of the problem too!!!!!

    Liked by 1 person

    Comment by Kathy S.B — March 7, 2021 @ 2:00 PM

  15. I swear the word “menopause” scared the crap out of epitologists and neurologists even if they are females!!!!!!!

    Liked by 1 person

    Comment by Kathy S.B — March 7, 2021 @ 2:03 PM

  16. Also apparently “lyrica” is generic for “LAMICTAL” as well (just a note from me to you all)


    Comment by Kathy S.B — March 7, 2021 @ 2:37 PM

  17. NO! Lamotrigine is the generic for Lamictal.

    Lyrica is used to treat pain caused by nerve damage.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — March 7, 2021 @ 2:51 PM

  18. Thank you for the correction Phylis 😘

    Liked by 1 person

    Comment by Kathy S.B — March 9, 2021 @ 9:48 PM

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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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