Epilepsy Talk

The Perils of Discontinuing Your Meds | November 25, 2017

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://www.gpnotebook.co.uk/simplepage.cfm?ID=865730614
https://www.epilepsyct.com/article.php?id=87
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


40 Comments »

  1. Hi-

    Always good reading your informative articles.

    I have Refractory epilepsy. I recently read some of the side effects of two of my meds. I haven’t been able to see my Dr. for a long time. I did just as you mentioned (just read it today); and reduced my Keppra by 1/2 tablet for about 3 weeks; then another half. The problem is not anywhere near like it was before. Yes, very gradual, and I am not off it completely.

    Like

    Comment by Karen Frandsen — November 25, 2017 @ 6:10 PM

    • Karen, I’m sorry you weren’t able to see your doctor, but it seems as if you using good judgement titrating yourself down on Keppra.

      How are you feeling? Have you noticed any side-effects — positive or negative?

      Like

      Comment by Phylis Feiner Johnson — November 25, 2017 @ 10:50 PM

      • having the refractory epilepsy, the doctor(s) have informed me that more than likely, I will face it lifelong. As far as side effects from the decrease, (knock on wood) I no longer face the problems with imbalance and posture affecting my back with pain.,

        Like

        Comment by Karen — December 1, 2017 @ 11:34 AM

      • Did your doctor approve the decrease? If so, good. But, as you probably know, you should never take med matters into your own hands.

        Like

        Comment by Phylis Feiner Johnson — December 1, 2017 @ 11:39 AM

    • Karen Frandsen, have you ever had to endure the postictal migraine headaches?

      Like

      Comment by Jeffrey Liakos — August 10, 2018 @ 7:41 PM

  2. Should you stop even if your doing well with your meds. That’s hard to determine even for your Dr. I had been on a group of meds for a lot of years, 1 being Tegritol ER which my Dr ran my blood levels every quarter and had me down to 100mg. Twice daily from 600mg. twice daily. He said it was so low in my system to even be a helper to the other 3, I was taking.
    Before He stopped the pill, I asked what are the chances that even being so low that that’s
    1pill thats keeping me almost stable. He said that low it’s not even concidered a helper, it would be rare. Less than a month later I was at 6 grand mals. before ambulance got there. When I woke up in the hospital it had affected my vision, it was more than 8 hours before my sight came back, I thought I would be blind on top of epileptic for ever. I’ve been taking pills since I started having seizures 18 years ago, I’m 55 now, as much I hate them, I’d have to think about what might happen. I know how you feel, I’m sorry. Are the seizures coming back or getting worse worth it. I thought I’d be blind to. Have a good day and wish you well.

    Like

    Comment by Frank Fernandez — November 25, 2017 @ 8:12 PM

    • OMG. What a horrid thing to happen. And how scary. Wow, Frank, you’ve been through the mill.

      I know for me, I’ll be on Lamictal for life, seizures or no seizures. My doctor considers it maintenance and that’s alright by me.

      I’m 99% free and clear and hope to remain that way.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — November 25, 2017 @ 10:57 PM

  3. Your info is so helpful. I hope to address many of these topics with my Professional. The more ideas and topics covered the more I want to know.

    Like

    Comment by Andrew Plant — November 26, 2017 @ 12:02 AM

  4. Reblogged this on catsissie.

    Like

    Comment by catsissie — November 26, 2017 @ 12:04 AM

  5. I was on the same AED’s for nearly 25 years and seizure free for all that time. My hospital kept trying to get me to come off my meds loads of times during that period. In the end they ground me down so much I agreed to it, something I have regretted ever since, because a short while later I started to have seizures again.
    For the next few years no matter what meds they tried they could not bring them back under control again. So in the end I had surgery, and have been seizure free ever since but still remain on my meds.
    They are now trying to get me stop taking the meds again claiming I do not need them as my surgery was a success. But as I told them “Once bitten twice shy”.
    I am not willing to take that risk again, not after what happened last time round.

    Like

    Comment by Phil Grice — November 26, 2017 @ 12:52 AM

    • From what I’ve heard (and this is not personal experience) most people are supplemented with a low dose of AEDs after surgery.

      I understand your point of view. Especially “Once bitten twice shy”.

      Like

      Comment by Phylis Feiner Johnson — November 26, 2017 @ 10:05 AM

  6. Having spent 9 months weaning myself off medication last year and now being a year medication free I have to take you up on this.

    As I expect you may have realised by now Phyllis my epilepsy is quite severe. I was dragged 100 yards under a car and left for dead for 4 hours in 1982.
    Naturally in these circumstances (especially after nearly 36 years) I am not expecting to find myself instantly seizure free. My “underlying brain damage” is pretty total and I am lucky I can string two words together, let alone two hundred.

    Epilepsy drugs don’t repair brain damage, they inhibit the brain’s natural process. I believe I have mentioned this before so I am surprised you are still stuck in the loop. Perhaps my surprise is ill placed though, it took me thirty five years of taking epilepsy drugs to realise that they don’t work.

    I have had my generalised epilepsy since 1982 and yet now I am off medication and taking the 20 amino acids and other natural stuff in moringa every day they continue to ease off. The last one I had was two weeks ago in the doctors surgery. That was a great opportunity to show him how quickly I recover now that I have the full use of my brain back.

    There is a lot of talk about epilepsy positivity everywhere, unfortunately epilepsy drugs are innately negative. They reduce the amount of electrical activity in the brain because a seizure is caused by excess electrical activity. Reducing the amount of electrical activity overall reduces ones ability to function and ones ability to recover from a seizure. The treatment hasn’t changed since it was first used in 1882. People still thought the brain was the only pert of the body that couldn’t regenerate in 1982 when I was put on them.

    The answer is simple (even though it did take me 35 years to find it). Amino acids encourage the brain to regenerate, it’s not an instant fix. I started off using moringa simply to ease the side effects of my carbamazepine and lamotrigine. Now it has replaced them.

    I have requested an MRI scan to see what physical improvement there has been in the structure of my brain (if any). That will be interesting. I had an MRI scan years ago and the doctor told me that “The synaptic gaps are wider than normal”.

    “You’re telling me that my brain is shrivelled aren’t you.” I said.

    “Yes I am.” He said.

    And yet I can still string over 400 words together.

    Like

    Comment by chaplinslivingstatue — November 26, 2017 @ 7:30 AM

    • Good for you. And thanks so much for your input and sharing your (scary) experience.

      Surely proof that there is “life after death” and a life that’s healthy drug-free.

      What form and dose of Moringa do you recommend?

      (Readers: Moringa can purchased be at Amazon.com.)

      Like

      Comment by Phylis Feiner Johnson — November 26, 2017 @ 10:01 AM

    • I’m so happy that you took care of your epilepsy, on your own. Starting a few years ago, I started to slowly take care of my epilepsy. I now am barely taking any medicine and I’m on CBD oil. I remember my past and everything in my present, and I’m not having any seizures.

      Like

      Comment by whittemore1958 — June 23, 2018 @ 11:02 PM

  7. Reblogged this on TBI Rehabilitation.

    Like

    Comment by Kostas Pantremenos — November 29, 2017 @ 3:33 PM

  8. I have faithfully taken my meds for 53 years. Now my kidneys are fried from this chemical stew that has been put into my body. I have to say that I have not had a great quality of life. I was forbidden to have children, intellectually dulled, and now I am going to die from renal failure. What kind of life has this been for me? Angry? You betcha.

    Like

    Comment by Emmberr Clark — December 23, 2017 @ 6:52 PM

  9. I wish Western medicine was more evolved. What I mean is that I wish M.D. types were encouraging patients to ask questions about different alternatives. You would take the medication as prescribed, however, the Doctor in question would be open-minded enough to natural methods.

    Like

    Comment by Jeffrey Liakos — February 10, 2018 @ 1:01 PM

  10. Up above you are saying that anyone who has been on drugs for a while should not slow down the mg until about 5 years after their last seizure. I disagree with you and neurologists on that. Doctors have prescribed a great deal of medicines to me during my whole life. All through those years, I was having 2-3 seizures in every week. Doctors always told me that I must take more, to stop the seizures. All that did, was caused me to have more seizures. I decided in 2014, to be my own doctor. I slowly started to lower my medicines, on my decition, not a doctor’s decition. As the time went on, I could keep lowering the medicines. As of May, 2018, both of my medicines were down to almost nothing in mg. that is when I started to take CBD oil a couple times every day. I’m feeling so much better now. In my case of epilepsy, I look at several neurologists as fools who only like to make money.

    Liked by 1 person

    Comment by whittemore1958 — June 23, 2018 @ 10:45 PM

    • In theory, I disagree. In concept, I understand.

      What role do you think the CBD oil has had in your recovery?

      Is it a substitute or just a safety net?

      Like

      Comment by Phylis Feiner Johnson — June 24, 2018 @ 9:24 AM

      • While I was taking 3300mg of the 2 medicines, I was still having 2-3 seizures per week. I started the CBD oil 5 weeks, 4 days ago. That is after I lowered my medicines down to 550mg. I have been seizure free during the past 9 days. I’m feeling much better, not sleepy all the time, memory is working dramatically, my (medicine) anger is gone, etc.
        Doctors must open their minds to the present and future medical facts. How can they say that they are smart, when they only stay in the past?

        Like

        Comment by whittemore1958 — June 24, 2018 @ 2:49 PM

      • Doctors are not the Gods they think they are. And you’re right, we must not worship at their feet.

        If what you did is working for you, that’s what matters most.

        Like

        Comment by Phylis Feiner Johnson — June 24, 2018 @ 4:36 PM

  11. Phylis Feiner Johnson, what if someone tries to argue that natural methods are less damaging to the liver than prescription medications? Would that argument be valid from a medical standpoint?

    Like

    Comment by Jeffrey Liakos — June 26, 2018 @ 8:21 PM

    • Yes.

      Like

      Comment by Phylis Feiner Johnson — June 26, 2018 @ 10:19 PM

    • Jeffrey, good question. I have another question to ask Phylis Feiner Johnson. Phylis, I know within my health and health in some other epileptics, that there are very bad side effects, from some medicines, that are very bad to the brain. In some cases, that cane make the persons life much worse. why can’t scientists come out with medicines that do not have bad side affects?

      Like

      Comment by whittemore1958 — June 27, 2018 @ 9:55 PM

      • Excellent question.

        Side-effects are a matter of individual chemistry.

        Some people get side-effects from one drug, some don’t.

        For example, I’ve been on Lamictal, with no side-effects, for 10+ years and I’m 99% seizure-free.

        Perhaps I’m one of the lucky few.

        Like

        Comment by Phylis Feiner Johnson — June 28, 2018 @ 7:53 AM

  12. Phylis Feiner Johnson,one feeling that I have from time to time is profound apathy regarding taking my medication. Some days, even though I know the risk of being without it, there is a noticeable apathy there!

    Like

    Comment by Jeffrey Liakos — July 6, 2018 @ 7:26 PM

    • No one likes meds or more exactly, the side-effects of the meds they take.

      Like

      Comment by Phylis Feiner Johnson — July 6, 2018 @ 10:58 PM

      • Phylis Feiner Johnson, the medication is not itself a problem. The hassle is the short-term memory issue.

        Like

        Comment by Jeffrey Liakos — July 7, 2018 @ 9:59 AM

      • Along with depression, anxiety and a whole host of other side-effects.

        Like

        Comment by Phylis Feiner Johnson — July 7, 2018 @ 10:20 AM

      • Phylis Feiner Johnson, up until 2015, which was a year of hell for me, I never had to experience Status Epilepticus to the best of my knowledge until that point. Some days, even though it is not a healthy mindset, I feel an unspoken apathy regarding my medication. At times, I think to myself, “If nothing happens, nothing happens. Whatever happens, it is what it is.” Do you ever have these thoughts and/or feelings yourself? For me, I have always suffered the migraine headaches after each event. All I can say is that you are very fortunate to never have to endure the pain.

        Like

        Comment by Jeffrey Liakos — July 7, 2018 @ 1:26 PM

      • That a rather fateful way to look at things.

        As for the migraines, they are probably the postictal stage of your seizures.

        Like

        Comment by Phylis Feiner Johnson — July 7, 2018 @ 2:06 PM

      • Phylis Feiner Johnson, yes, the migraines are in the postictal state. You said that my one comment was a fateful way of looking at things. Yes, it is a harsh thing, however, I cannot help but have these feelings at times.

        Like

        Comment by Jeffrey Liakos — July 7, 2018 @ 3:26 PM

    • I’m replying again, after about a month. I take 2 medicines. They are both organic,for Carbitrol and Keppra. In 2015, I started to lower my medicines in dosage. Up until the end of 2014, I was taking Carbitrol 1500 mg and Keppra 1500 mg. I slowly have been lowering both medicines up until May, 2018. as of then, and now, I take Carbitrol 300 mg and Keppra 250 mg. As of now, I have decided to stop lowering the medicines down to 0 mg because of the hot summer weather. I do feel, at this time, that I will lower my medicines down to 0 mg this coming fall. The main reason why I’ve been lowering the medicines on my own, is because my neurologist is very fare away from where I live and I’m only able to see him once every 6 months. My next appointment to see him is on August 31, 2018. I will be sharing with him all that I just shared with you. Another reason why I’m wanting to cut back is because all of my life, I never have felt any of the medicines in slowing down my seizures to none. Since I started to lower my dosages, I have been eating organic foods, including eating gluten-free, soy-free, and dairy-free. In May, I started to take CBD oil. I’m feeling much better on most days. What I mean by most days, has to do with how hot the weather is. I had a seizure on July 4th, when the temp was in the mid 90s.

      Liked by 1 person

      Comment by whittemore1958 — July 6, 2018 @ 11:15 PM

      • What part of the seizure reduction do you feel you can attribute to your healthy eating and what part to taking CBD oil?

        Liked by 1 person

        Comment by Phylis Feiner Johnson — July 7, 2018 @ 9:13 AM

      • I feel that “fake” chemical foods and medicines are very bad for the body and even more so bad for the brain. Before I started to lower my medicines, I changed my food diet to organic. With the organic foods and lower dosage of pills, I kept feeling better. When I started the CBD oil earlier this year, I’m feeling even better, unless the weather will get real hot.

        Like

        Comment by whittemore1958 — July 7, 2018 @ 2:45 PM

      • Good for you.

        You’ve succeeded at what many of us wouldn’t and couldn’t.

        Like

        Comment by Phylis Feiner Johnson — July 7, 2018 @ 3:37 PM

      • Phylis Feiner Johnson, at times, even though I wish I could be free of the medication, the side-effects, I know that at this time I cannot take the risk of being without it. Having said that, there are times that these thoughts and feelings are there, however, not with much regularity.

        Like

        Comment by Jeffrey Liakos — July 7, 2018 @ 3:44 PM

  13. Phylis Feiner Johnson, I know that these thoughts/feelings I have expressed seem disturbing. However, I have them from time to time.

    Like

    Comment by Jeffrey Liakos — July 7, 2018 @ 3:36 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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