Epilepsy Talk

The Perils of Discontinuing Your Meds | December 14, 2014

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), Carbamazepine, Depacon, (sodium valproate), or Sabril (vigabatrin). The dose should be reduced by about 10% every two to four weeks.

Zarontin (ethosuximide), barbiturates and benzodiazepines should be reduced more slowly, 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:
http://www.epilepsychicago.org/epilepsy-facts/treatment/discontinuing-antiepileptic-drugs/
http://columbiaepilepsy.org/docs/patients/AED%20discontinuation.pdf
http://www.medscape.com/viewarticle/513638
http://www.gpnotebook.co.uk/simplepage.cfm?ID=865730614
https://www.epilepsyct.com/article.php?id=87
http://www.fable.org.uk/what%20treatments.html
http://www.marianjoylibrary.org/Residency/documents/Ref9.pdf
http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2008.01923.x/pdf
http://www.neurologyindia.com/article.asp?issn=0028-3886;year=2014;volume=62;issue=1;spage=3;epage=8;aulast=Rathore
http://comtecmed.com/cony/2013/Uploads/Editor/Ozkara.pdf


43 Comments »

  1. I’m not sure who the author of this post is, but I’m pretty sure she doesn’t have epilepsy. I find it humiliating and insulting for anyone to think that a person with epilepsy would consider decreasing or eliminating her anticonvulsant unless directed by her neurologist. Thinking otherwise implies some kind of link between epilepsy and a psychiatric disorder.

    Like

    Comment by Susan — December 14, 2014 @ 12:39 PM

    • Applause to you Susan that you are a strict believer in compliance. Unfortunately, not everyone follows your same conviction.

      Many stop their meds because they “want to”, they don’t feel they “need” them after a seizure-free period, or they don’t want to feel “different” or “needy”.

      I think it’s harsh to condemn these people, misguided as you may find them. But this is reality. Real people, in the real world.

      Like

      Comment by Phylis Feiner Johnson — December 14, 2014 @ 4:45 PM

      • i like your reply having been on medication a long time. Doing research in medication in seizure medication and at times having status too. I take Keppra XR, 6000 mg., zonegran 460 mg.,Klonopin 1 mg. Daily , Onfi 10 mg daily, and phenobarbital 38 mg daily . I have generalized sz and partial sz I’d love to get off med. I worked in medical field for 10 years then life changed and married and had children. I volunteer but sz get in the way. Drove 1 year but did not no I was having sz in car. Haven’t driven since college.

        Like

        Comment by Toni Robison — December 24, 2014 @ 10:44 AM

    • I decided to try to come off of my meds in 2013 for what I consider a very good reason even though my neurologist and my epilepsy specialist nurse were against it.

      It’s an exceptionally long story so I shan’t go into too much detail but the long and short of it is that I had less seizures between the time I first noticed something was wrong and when I was diagnosed and put on medication five years later. Since then, the medication has been a far bigger problem, the tiredness means that it doesn’t much for something to become “too much” and trigger a seizure. As a result, I’ve had on average two seizures a year and had to contend with the daily side effects and the enormous disruption to my life the EIGHT times I’ve changed meds in the endless pursuit of being 100% seizure free.

      In 2013 after a particularly nasty experience with Zonegran I had just had enough. If I wasn’t on the medication, I wouldn’t be so tired and wouldn’t have to tip toe around trying not to trigger a seizure. Plus, I could wave goodbye to cotton wool brain and have my mental faculties back. My hope was that things would return to the way they were before being diagnosed, a tonic clonic every couple of years or so, a partial seizure once a year (if that) and a life unfettered by medication.

      Unsurprisingly everyone was against it, family, friends and medical professionals but I made a detailed plan of slow reductions and went ahead. It didn’t go well. I started having seizures once a week and after about six I decided not to pursue the reduction any further. Had I still been living alone I would have stuck it out a bit longer but I didn’t feel it was fair on my boyfriend who was the one who had to keep picking me up off the floor.

      Even though things didn’t work out I still believe that without medication I would be back to the way I used to be. The obstacle is that withdrawal is fraught with far too many problems and because of that it’s unlikely I’ll ever be able to be med free.

      I don’t see how any of that would imply a psychiatric disorder.

      Like

      Comment by bardotbarbiturate — January 25, 2015 @ 11:49 AM

  2. I’ve only been seizure free for a limited time and that was while in the Sabril drug study way back in 1999. The study was discontinued due to the fact that vigabatrin caused hemhoraging in the capillaries in the back of the eyeballs: potential side effect, irreversible blindness, I was off that study cold turkey, no titration or taper, it was receive a call, ‘Bring your study drug bottles with to your surprise appointment tomorrow,’ at the appointment, bottles were taken away and I was put on Depakote and gained 20 lb. Seizure control has always been an unsure quantity for me: 3 to 4 a week at best, I’ve always had abnormal brain waves. I could never contemplate going off my meds, am down to just 3 drugs now, have been on as many as 5. Sorry I got off track, Sabril’s a wicked drug, not approved for use by adults by the FDA due to the blindness thing and now it is being used to treat infants. The question is: seizure control or blind babies?

    Like

    Comment by wordsmith1963 — December 14, 2014 @ 1:57 PM

  3. What a terrible story. Why is Sabril being used to treat infants? Are they not blind (sorry, no pun intended) to the potential dangers and damage?

    Were you affected by the Sabril? Are your seizures controlled by your present drugs?

    I guess it’s safe to say, there’s no such thing as miracles. (Everything has its price.)

    Like

    Comment by Phylis Feiner Johnson — December 14, 2014 @ 4:51 PM

  4. This was an excellent article and I think it displayed both sides ( to quit or not to quit) quite fairly. Just because one person would be petrified to go off meds, another may not be. Everyone is different. To castigate those that would like to live med-free is pretty closed minded. Your neurologist is NOT God.
    Thanks Phylis for the great article. You’re ever the diplomat:)

    Like

    Comment by HDL — December 15, 2014 @ 7:45 AM

  5. Thanks HDL. I think, for some, epilepsy is not only a medical condition, but an issue of lifestyle.

    I don’t agree that it’s a mater of black and white. There are a lot of greys out their and epilepsy, along with all the baggage attending it, is one of those “greys”.

    I wish it was as simple as “yes” or “no”.

    Like

    Comment by Phylis Feiner Johnson — December 15, 2014 @ 9:22 AM

  6. After 50 years of seizures and now being seizure free for 5years after surgery, I wouldn’t miss a dose of my maintenance meds,no matter what!!!!!

    Like

    Comment by Charlie — December 25, 2014 @ 7:22 PM

  7. Of all people, you should know Charlie. Why mess with success! 🙂

    Like

    Comment by Phylis Feiner Johnson — December 26, 2014 @ 11:30 AM

  8. Agree there is such a black and white and grey areas.. everyone has a different type and circumstances.. its amazing..Im on clonazepam… I know ppl don’t necessary agree with that drug. But Its helping this time. Im hopefully not going to zinx it… this month… 19 days free.,sleep apnea sleep seizures regular seizures… just once a month during the full moon. It didn’t happen.. I think if your doctor agrees go off those pills.. but don’t be surprised if they come back.. good luck if you are. I hope to get to that point where I can be off pills.. I did have a pinched vagus nerve… the neurologist said it was not related … yet i keep reading about vagus nerve stimulation…

    Like

    Comment by laura — February 4, 2015 @ 2:48 PM

    • Laura you might be interested in this article:

      Vagus Nerve Stimulation…Is it for YOU?

      https://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%E2%80%A6is-it-for-you/

      Like

      Comment by Phylis Feiner Johnson — February 4, 2015 @ 4:04 PM

      • I was diagnosed partial complex in 1983. I did the VNS surgery 2005. Just this last Nov. 2015 I had a replacement battery installed. That particular battery should had only lasted max 8 years. Needless to say i was pushing it. Prior to the replacement I did doubt if it really work. Until before the surgery I was having constant episodes. The seizures stopped after surgery. Therefore I am grateful today for having the VNS installed. As a matter of fact from the experience I had I do question if the medicine therapy really help control my seizures. Like mentioned above, each person has their own unique situation. There are a lot to consider, the kind of episodes, overall health, environment, stressors, lifestyle, what a person is willing to sacrifice. Remembering which therapy a person takes is a management program not a cure. Only God has the authority to heal this condition if He so chooses. That is His plan. Either way it is a witness for His glory and a person goodness however it may be.

        Like

        Comment by Sheri — April 17, 2016 @ 12:08 AM

    • Laura, I find that for me the worst part would be the headaches.

      Like

      Comment by Jeffrey Liakos — September 23, 2016 @ 5:51 PM

  9. It is erroneous to believe that you must be seizure free in order to come off medication. Getting seizure free through medication is manipulating your health. My approach is to improve brain health first and watch as the seizures decrease. After that, you can start decreasing medication. If a seizure does occur, you need to analyze what you were doing. Make sure that you were staying hydrated and eating brain supporting foods. Determine if the seizure type was worse than you experienced before or if it was a smaller one. There are many forms of treatment. Medication is only one.
    You can sign up for my brain health cookbook and discover wonderful foods that support better brain health leading to improved seizure control.

    Like

    Comment by Melinda — June 20, 2015 @ 7:46 AM

    • How do I sign up for your cookbook?

      Like

      Comment by NANCY — January 22, 2016 @ 12:51 AM

    • Melinda, I agree with you. Of course, even if I was permanently free of seizures and my doctor felt it was safe to take me off of them, the risk just is not worth it.

      Like

      Comment by Jeffrey Liakos — September 23, 2016 @ 5:57 PM

  10. Melinda,
    Thanks for your insights.
    What is the name of your book?

    Like

    Comment by Phylis Feiner Johnson — June 20, 2015 @ 12:02 PM

  11. Yes, I would be interested in that book too.

    The thing about the sage advice to “always check with your doctor first” is that it sounds really reasonable but it assumes that you have a well informed and accessible doctor. That’s not always the case.

    Where I live, with my HMO, it is a matter of many months to even get an appointment with a neurologist (no such thing as an epileptologist here).
    Then, when you finally do see them they are staunchly against anything that doesn’t come in a pill bottle. They are even against proven dietary interventions such as the ketogenic diet but when you ask why they get all flustered and it becomes clear that they really don’t know the first thing about it.

    So, while I would like to, “work with my doctor” to taper my meds, I don’t think it makes me mentally unstable if I feel like I am pretty much on my own here.

    I’m not going to continue to take high levels of toxic substances for my whole life without at least trying to get off them just because I have incompetent and unavailable doctors.

    So far I have cut my phenobarbitol back by 50% with no loss of seizure control. I did it very gradually. I’m not crazy or stupid.

    Like

    Comment by paleobird — June 20, 2015 @ 8:51 PM

  12. Oooops. Got that wrong. “Trust thy doctor.” Or FIND thy doctor.

    Sorry.

    Like

    Comment by Phylis Feiner Johnson — June 21, 2015 @ 10:23 AM

  13. Well, where I live, that is a matter of a plane ride and staying overnight to get to a place that even has a neurology department. Under my HMO, Kaiser, I get the neurologist they assign me. If that person is ignorant or hard headed about anything other than pills being The Way, I don’t have the option to “vote with my feet” unless I want to go out and find a private practice neurologist which would be seriously expensive.

    Even before I moved here, (Molokai), when I lived in San Diego, my assigned Kaiser neurologist was someone that it was impossible to “work with”. I couldn’t even be honest with her if I had had a break-though seizure because she would go tattle to the DMV. My seizures are exclusively nocturnal and have been for 30 years. I am not a danger behind the wheel.

    How can you adjust meds “working with your doctor” when you can’t even tell your doctor if anything is wrong?

    Like

    Comment by paleobird — June 21, 2015 @ 5:03 PM

  14. Being assigned a doctor? That must stink. And having to take a plane ride to get there is double punishment.

    Not to mention being assigned to a doc who doesn’t know squat about you.

    No wonder you’re so knowledgeable. You truly have to fend for yourself and be your own advocate.

    Like

    Comment by Phylis Feiner Johnson — June 22, 2015 @ 9:42 AM

  15. Yes used to have Kasier , that didnt last long , when the lab teck used the same needle ,. while drawing blood , she wasnt protected either , she gave majority ppl coming into blood draws , HEP -C , this was in Roseville clinic & Elk Grove .. then my dr told me i had hep c , didnt do nothing , asked him if he needed to do something , no.. i switch hospitals , to UCD , my dr , a a gem , did slew of test liver , same as kidneys fine , had to switch meds from dilatin , mysoline , to Keppra , after V-EEG , been good on that ,, after work , wanted to give blood, bone marrow , tested me , 2 weeks later rec’d later from the blood bank , saying i had hep c .. i took it to my dr , at UCD , she ran the test again , told me to see this other dr , stg 3 , lost of weight , then the meds , scared to death , started eating right , less time on these drugs , & other vitamins , havent had any more seizures , ..in 15 yrs ..went from 3000 twice daily to 250 mg of keppra , twice .. my dr wants to cut down on meds ,. but , both in our minds , is this ” what if ” still the most expensive drug on the market , good thing , is the insurance mid yr brings it down to 6.00 instead of 79.00 .. vs 600.00 retail cost .. brand name / 500 generic

    Like

    Comment by Cathy Flowers — August 11, 2015 @ 2:25 PM

  16. Sounds like a nasty road you’ve been down Cathy.

    But the “what if” always weighs heavily on our minds.

    Like

    Comment by Phylis Feiner Johnson — August 11, 2015 @ 4:24 PM

    • I’m a what if. Seizure free after 29+ years. I always wonder, what if they come back? I used to take Dilantin & Mysoline back in the late 80’s. My memory is bad. I have a sleep apnea but I used a machine. I take sleeping pills so I sleep at least 8hrs. Every night. But, that’s me we are all different, what work’s for me might not work for you.

      Like

      Comment by NANCY — January 22, 2016 @ 1:08 AM

  17. Good point. I was seizure free and med free for 20 years. Then the seizures returned ad so did the meds.

    Like

    Comment by Phylis Feiner Johnson — January 22, 2016 @ 9:42 AM

  18. I’m using a product that is really helping in my efforts to taper off the meds. It’s called Holden’s Hope and it is a cannabis paste made in Colorado. It is a very low THC/ high CBD strain. The thing that is unique about it is that they cook the plant in coconut oil very gently at low temperature and then grind the whole plant and oil together to form a paste. Many of the CBD extract products that are out there are made using high heat and harsh chemical solvents to extract one component of the plant, the CBD. None of those seemed to do much for me one way or the other.

    It has been five months for me doing a careful and very gradual step back of my dose of Valproic Acid. I’m completely off that medication now with absolutely no loss of seizure control.

    Next I am going to work on my other medication, the phenobarbitol.

    I’m feeling great with less medication in my system. I’ve started losing weight (extra that needed to go) without any change in diet or exercise. The Valproic Acid is notorious for messing with your metabolic functions and making weight loss an up (a very steep) hill battle.

    Like

    Comment by paleobird — January 22, 2016 @ 5:53 PM

  19. Your preparation sounds intriguing. The recent thing I’ve been hearing about is Cannabis candy. (Yummy and therapeutic, too!)

    Good luck on your journey. It seems like you’re well on your way.

    Like

    Comment by Phylis Feiner Johnson — January 23, 2016 @ 4:09 PM

    • Oh yes, at dispensaries they have cannabis infused lollypops, chocolate bars, honey, mints, lemon aid and all sorts of other great stuff.

      These are good options for those of us who prefer not to smoke anything.

      Hawaii is supposed to be getting dispensaries some time this year. That’s one thing I miss about California.

      Like

      Comment by paleobird — January 23, 2016 @ 4:53 PM

  20. Anything you don’t have to smoke is a good thing!

    Liked by 1 person

    Comment by Phylis Feiner Johnson — January 24, 2016 @ 10:47 AM

    • Maybe I should check online….(this is 2017) and see if they make candy deliveries…. 🙂

      Like

      Comment by catsissie — August 15, 2017 @ 12:30 AM

  21. I will always have to take meds, even if I gone a few years without having a seizure. I never heard of being epilepsy free, is that the same as being seizure free.

    Like

    Comment by michele metzger — May 11, 2016 @ 7:26 PM

  22. Yes, epilepsy-free is the same as being seizure-free.

    Like

    Comment by Phylis Feiner Johnson — May 11, 2016 @ 7:35 PM

  23. I had a time where I was seizure-free as well as medication-free. About 10 years. Now I am back on medication. Even though I wish I could be free of it permanently, the risk to my health is not worth it.

    Liked by 1 person

    Comment by Jeffrey Liakos — September 23, 2016 @ 1:28 PM

  24. You know Jeffrey, everything has its price. The same goes for drug free. Even though I’ve been ALMOST (99%) seizure free for years, a few years ago I drove into the back of my garage. That one absence seizure, cost a lot a reconstruction, not to mention the fact that I lost my license for 8 months!

    That’s why I take my meds.

    Like

    Comment by Phylis Feiner Johnson — September 24, 2016 @ 8:42 AM

  25. This is true.

    Like

    Comment by Jeffrey Liakos — September 24, 2016 @ 12:38 PM

  26. Reblogged this on TBI Rehabilitation.

    Like

    Comment by Kostas Pantremenos — August 14, 2017 @ 3:18 PM

  27. Reblogged this on catsissie.

    Like

    Comment by catsissie — August 15, 2017 @ 12:14 AM

  28. What will be the cure for seizure and when will it ever be made?

    Like

    Comment by Lilian — August 15, 2017 @ 2:08 PM

  29. I struggle with this conversation about going off meds. Or in my cases the lack of conversation. I find it interesting that during my frustration searching I find this article 😉 I still don’t know what side I stand on based on my own situation. More info is always helpful on my search for a new neuro.

    Like

    Comment by Brandi Kaufman McKinnon — September 3, 2017 @ 1:37 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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