Epilepsy Talk

The Perils of Discontinuing Your Meds | January 16, 2019

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


37 Comments »

  1. Hi Phylis

    Happy New year to you from this side of the pond.

    Great discussion thread but if I may change the heading to stopping your medication for a while with uncontrolled epilepsy.

    I’ve read stories on sites like this about needing to have TC’S to ‘ reset ‘ your brain, to understand what side effects your medication causes, to feel free and ‘normal’ for a while, I’m feel that constant focal seizures cause a build up and just need to release that.

    I understand the risks involved, have you come across any reports on this ?

    Liked by 1 person

    Comment by Mark — January 16, 2019 @ 1:06 PM

    • I can understand the concept of resetting your brain, but I’m not sure I, for one, would have the courage to go through all that.

      Too many risks and uncertainties for me.

      I also don’t understand how it can feel “normal” to have constant seizures.

      Isn’t that what we’re trying to avoid?

      Like

      Comment by Phylis Feiner Johnson — January 16, 2019 @ 5:32 PM

      • I guess as in my situation the focal seizures aren’t controlled, the TC’S are stopped by the medication, if you are having constant seizures anyway and need ?

        Like

        Comment by Mark — January 17, 2019 @ 3:33 AM

      • One out of two is hardly acceptable.

        The object is to win the war.

        Not some half-baked solution.

        Like

        Comment by Phylis Feiner Johnson — January 17, 2019 @ 12:28 PM

      • Hi Phylis, there quite a few of us like Mark who ‘need’ to keep having seizures, even on meds. I know it’s really hard to explain even to many others with epilepsy but for some reason we get that buildup like Mark says and we will never feel better until a bigger seizure hits. Personally, I need about 2 TCs/month to be able to keep functioning the rest of the time. Long breaks of 3-4 weeks inbtween (like I’m in now) and the pressure cooker is so bad I’m desperate for this TC.

        I’d never come off the meds- they’ve kept me out of status and I still try and minimize them, but I do think some of us physically NEED to have regular szs. Maybe electrical overload? I’ve spoken to too many others to know it’s more than just annecdotal.

        Liked by 1 person

        Comment by Katie — January 19, 2019 @ 4:27 PM

      • WOW!

        Thanks for the information and the clarification, Katie.

        I still don’t “get it”, but I believe it.

        Does this “electrical overload” happen while you’re still on your normal dose of meds?

        Like

        Comment by Phylis Feiner Johnson — January 19, 2019 @ 4:34 PM

      • WOW!

        Thanks for the information and the clarification, Katie.

        I still don’t “get it”, but I believe it.

        Does this “electrical overload” happen while you’re still on your normal dose of meds?

        Like

        Comment by Phylis Feiner Johnson — January 19, 2019 @ 4:34 PM

  2. This is such a hard question for people with seizures taking meds.
    It also leads into the question can the brain heal itself given time.
    Also another interesting question would be does having a seizure actually damage the brain and make it more prone to more seizures?

    Liked by 1 person

    Comment by Zolt — January 16, 2019 @ 1:18 PM

    • Zolt, I’m really in a quandry about seizure activity damaging the brain.

      I really don’t have an answer, except that I was told that I had diminished gray matter, because of seizure activity.

      Old age (65) can contribute to that too.

      However, it’s also important to note, I’ve been 99% seizure-free for 10+ years.

      So, go figure. I sure can’t!

      Like

      Comment by Phylis Feiner Johnson — January 16, 2019 @ 5:40 PM

  3. I honestly do not believe an epileptic would ever discontinue his or her medicine. In 2012, my insurance company called to say my Lamictal was going up to $1,000 a month so my doctor switched my meds. And guess what happened? (I’ve told you this story before.)
    After a lengthy titration off of lamictal and onto Neurotin I had 6 seizures. And the reason was because the pharmacy filled my RX at 1/2 the dose of neurotin the doctor ordered. I never so the Neurotin dose because the RX was electronic. I had been
    completely off of Lamictal for 2 weeks and completely on Neurotin when the seizures occurred. But the worst part is that the ER doctor wrote I was non-compliant with my Lamictal and since I was unable to speak for myself at the time, my record still reflects this mistake. The ER doc would not change it afterward even though it wasn’t factual. And you know how that makes me look. But hey, I live in south suburban Chicago where they think epilepsy is a mental illness.

    Liked by 1 person

    Comment by Susan — January 16, 2019 @ 2:54 PM

    • How do YOU look?

      I think HE would look like a stupid idiot, if his notes were so inconsistent with your written history.

      Wasn’t that on your charts or in your neuro’s notes, too?

      I mean, how much does an ER doc, who’s a stranger, know about your body?

      Spank that boy.

      Then file a formal complaint about him being non-compliant with your records and history!

      Liked by 2 people

      Comment by Phylis Feiner Johnson — January 16, 2019 @ 5:47 PM

    • Susan,
      When your irresponsible doctor is knowingly engaged in carrying out wrong decisions & fabricating false reports, putting your wellbeing at risk for more medical hardships, your doctor is NOT making mistakes .
      Your doctor is committing medical malpractice, endangering your life & many more voiceless patient’s lives, who can NOT stand up & speak for themselves due medical disability.
      The State Medical Board should be involved in investigating, screening, suspending or revoking the Doctor & the Pharmacy’s license before some helpless patient ends up getting killed by the negligence of the Doctor & the pharmacy.
      It’s great that you made it through the difficult times.
      Gerrie

      Liked by 1 person

      Comment by BahreNegash Eritrea — January 16, 2019 @ 10:26 PM

  4. Great article but there should be another one entitled, “The Perils of Continuing To Take Your Meds”.
    In addition to the side effects you feel everyday, e.g. tiredness, brain fog, “kepprage”, etc., there are the long term side effects you would rather not think about like metabolic dis-regulation leading to weight gain, diabetes, heart problems and such, not to mention that some AEDs contain known carcinogens! Thanks for the cancer causing parabens, Valproic Acid.
    IMO, if you stand even a small chance of reducing or eliminating meds, it is worth a try.

    Liked by 1 person

    Comment by paleobird — January 16, 2019 @ 2:54 PM

    • I hear you, and in a carefully monitored and controlled environment, I would agree.

      But with some meds (like Keppra), what is needed is change, not just quitting meds cold-turkey because of the raging side-effects.

      Like

      Comment by Phylis Feiner Johnson — January 16, 2019 @ 5:51 PM

      • I agree to changing medications. Being a mentor, and my own experience with medications over 50 years, taught me how important it is to find the medication that treats the seizures with little mental impact. The medications are designed to alter the brain process and I have experienced being calm person to total anger, or so tired I became non-functional. We need to be aware of the impact to the rest of the body, especially the kidneys and liver as the medications may eventually become toxic.

        Liked by 1 person

        Comment by Jon Sadler — January 21, 2019 @ 11:54 AM

      • And it’s such a crap shoot, Jon.

        One med might do one thing and another something else.

        Sometimes, you may never know until you suffer the complications.

        (I went toxic on Dilantin and went into a “deep sleep” for 2 days.)

        Like

        Comment by Phylis Feiner Johnson — January 21, 2019 @ 12:15 PM

  5. I got full control very early on and after 1.5 yrs no seizures my family doc (never saw a neuro back then) decided I was cured and took me off the meds. I was actually fine for another year (which I’ve never totally understood why) and was even learning to drive. Then it suddenly came back as completely intractable. Looking through a book (!) a few years back I found what closely matched the type of idiopathic primary gen type I have, and it said that while it’s a fairly easy type to get control of, about 95% of people who come off the meds will relapse and getting control back will be very difficult. So maybe if I’d stayed on the meds I’d still be ok? Moot point now I know, but I think this was a case of being a victim of my era (1980s). I’ve been told it would’ve been managed completely differently these days.
    I certainly can’t come off meds now with very uncontrolled TCs. The consequences don’t bear thinking about 😦

    Liked by 1 person

    Comment by Katie — January 16, 2019 @ 3:23 PM

    • Maybe if you stayed on your meds, you would have been ok.

      Who was playing doctor here? Your PCP?

      I’m so very sorry that you suffered the consequences, Katie.

      But there’s no guarantee you would have been better treated in 2019.

      Like

      Comment by Phylis Feiner Johnson — January 16, 2019 @ 5:57 PM

  6. Reblogged this on catsissie.

    Like

    Comment by catsissie — January 16, 2019 @ 4:41 PM

  7. For 40 years, I was taking the AED’s as it all started at 7 months old. When I was 10 days away for being seizure free for 2 years, I had a GRAND MAL seizure from the toxic food chemicals of CARAGEENAN, & a few more toxic MSG’s that were in 3 halves of CREAM PUFFS which surely was no full course meal. I had an empty stomach at the time where this happened at COSTCO, & was going to eat later at a GOLDEN CORRAL across the road. I knew what foods in the past had harmed me, but I was believing that God was in the making of healing me on the time span where I was 10 days away from 2 years being seizure free, that NOTHING was going to start up another GRAND MAL seizure. Well What did I know ? as I had the worst ever GRAND MAL in my life all from the toxic food chemicals in only 4 ounces of FAKE & TOXIC FOOD. That was over 6 years ago as a CONCUSSION happened from that & my seizure condition has never been the same, and at that time I was just 2 weeks off all drugs. Those days being off the drugs, & believing my life was changing to be the best & getting better, made me humbled even more than I ever was in my life. Now today I am more sensitive than ever where MSG’s & other food toxins are a 100% DANGER that a GRAND MAL will happen sooner than later as it does not matter if I only take 100MGS a day or 5000 or more MGS a day, as the seizure will happen no matter what IF the toxic food & drug chemicals keeps invading the brain & the BLOOD BRAIN BARRIER. Surely on that day I suffered TBI, but they never claim I had it, & have never been treated for it. Again,, I WONDER WHY ? Maybe if I had the TBI treated & cured by now, I would not have had many seizures in the last 6 years from my concussion, but I have to have them, to keep the neurologists & BIG PHARMA cash machine running smoothly.

    Liked by 1 person

    Comment by CD — January 16, 2019 @ 9:07 PM

    • How can thy ignore TBI? have they ever heard of testing?

      Were you as sensitive to toxic ingredients then are you are now?

      Like

      Comment by Phylis Feiner Johnson — January 17, 2019 @ 12:13 PM

      • I know for the PAST 55 YEARS I was then in 1965 to 2019 that food & drink toxins always created some brain chemistry disfunction. It was ignored then as much as it is today, because they all know that ASPARTAME & MONO SODIUM GLUTAMATE are their bread & butter & cash cow. That’s no BS either, or else we would have had voices like mine that were & are heard & done something about then & today also. Not going to happen though unless you can afford to go to a country like ISRAEL where they treat conditions & not symptoms. I guess the Chinese ACUPUNCTURE could help over time as the MONEY spent for that may be worth it.

        Liked by 1 person

        Comment by C D — April 6, 2019 @ 9:49 AM

      • Well, since I can’t afford to go to Israel, Chinese acupuncture (not acupressure?) is a viable idea.

        Thanks, as always, C D.

        Like

        Comment by Phylis Feiner Johnson — April 6, 2019 @ 9:54 AM

  8. I guess that I’m among those 8% who regret having tried to discontinue their meds. After having surgery it seemed that I was perfect–not even a single aura. So after a year or so of being seizure-free, I took another year and a half to slowly drop my medication with my doctor’s blessing. I’d done everything right…but then it failed. Only a few months after I took the last of my medication, I had a moment of massive pain with the feeling that something had exploded within my brain. And that was the end of the seizure control. Not only do I now have occasional seizure activity even while on meds, but I have side effects from my medication that I’d never had in the previous years when I was on it. We all hate medicines. But the desire to drop them should be measured against the risks as well.

    Liked by 1 person

    Comment by Deb — January 16, 2019 @ 10:02 PM

    • How discouraging.

      Just when you thought you were safe and out of the woods, you’re not.

      I’m truly sorry this happened to you, Deb.

      But I think your words of wisdom are right on the mark.

      What a disappointment and heartbreak.

      Like

      Comment by Phylis Feiner Johnson — January 17, 2019 @ 12:23 PM

  9. After two years of undiagnosed partial or focal seizures, my one and only noctunal TC occurred at age 62. No real reason for either was ever found. With a one hour EEG, my neurologist said I had a 30% chance of having another seizure if I was not medicated. He felt if I were to try going off my meds, I should try it while I was not allowed to drive for a year. After eight months, a 24 hour EEG was done with results indicating I had a 65% chance of having a seizure if I discontinued my Keppra. There was no chance I would even think of stopping my medication.

    I was fortunate enough to have had the TC while asleep in bed. My only injury was a bitten tongue. However, my husband and son had to endure witnessing the seizure and then the 15 minute post ictal period, thinking I was gone or evr going to wake up. There is no way I would ever want them to experience that again. Additionally, the thought of a seizure happening anyplace other than my bed is just too frightening. I can’t even imagine the terrible injuries that could result while standing or driving.

    While everyone’s situation is different, the one recommendation I would give should anyone decide to try going off their meds is to have a 24 EEG. It gives you a better idea of your odds than the one hour one.

    Helen

    Liked by 1 person

    Comment by Helen — January 19, 2019 @ 1:25 AM

    • Thanks for sharing your story, Helen.

      I don’t think I’d stop my meds unless I had been seizure-free for a two or three year period of time.

      But you’re right. A 24-hour VEEG is much more effective than a regular EEG.

      I’ve known people to have no seizures show up on five different regular EEGs, only to finally discover them on a VEEG!

      Like

      Comment by Phylis Feiner Johnson — January 19, 2019 @ 9:34 AM

      • I am four years seizure free and I still would not think of stopping my meds. However, I have not had any ill side effects to my Keppra other than being tired and it has kept me seizure free. So, I do understand why someone who has severe side effects might want to stop if they have been seizure free. My heart goes out to all of you in that situation. It is a tough decision.

        Liked by 1 person

        Comment by Helen — January 19, 2019 @ 9:54 AM

      • I agree, it IS a tough decision.

        But changing meds might be an option there, too.

        Like

        Comment by Phylis Feiner Johnson — January 19, 2019 @ 10:20 AM

  10. I wouldn’t stop mine without having one heck of a backup plan in place, and I haven’t been officially diagnosed as epileptic. I’ve had two TC’s and some focals I believe, all due to abnormal lighting situations, and if my last one happened any other time of year other than winter in the same location, I would have hit concrete instead of fresh snow. My eeg’s are abnormal but not due to epilepsy, according to my neurologist but it is possible. He put me on keppra anyway and upped the dosage last week because I still had dizzy spells and is now sending me for more heart tests because of that and palpitations. Also, he added adivan sublingual in emergency. I’ve always been a person to treat myself naturally first, but that is not the answer for this. While I don’t have a diagnosis yet, which is frustrating, I have a great neurologist (ranked 3rd out of 89) in my city so I think I’ll continue with his advice as it seems he is trying to rule everything else out.
    On a side note, with all these tests I am sure glad I live in a country with universal healthcare.

    Liked by 1 person

    Comment by Marlyn — January 19, 2019 @ 9:13 PM

    • Your light sensitivity could be a reflex action, warning you of some epileptic discharge.

      Nevertheless, it’s wonderful you have such a responsive neurologist and that you stick to his plan.

      Take heart. Millions of people are diagnosed with epilepsy without knowing the reason. At any age.

      You are not alone.

      Like

      Comment by Phylis Feiner Johnson — January 20, 2019 @ 10:53 AM

      • Thanks Phyllis.
        I’ve spent my life being active and eating properly thanks to the guidance of my parents, and therefore have been proactive in staying healthy. Knowing when to get the help of a professional is also proactive.
        Also, one thing that helps if I feel a seizure coming on is very deep, slow breathing. I have learned some basics in Katonah Yoga and plan on taking some pranayama classes.

        Liked by 1 person

        Comment by Marlyn — January 20, 2019 @ 11:34 AM

      • I’m a firm believer in deep breathing, although I’ve taken no classes.

        But there are CDs out there that take you through a series of breathing exercises.

        Congratulations on your proactive attitude! You’re obviously doing something right…

        Like

        Comment by Phylis Feiner Johnson — January 20, 2019 @ 11:53 AM

  11. I think unfortunately we all want to eventually get off our meds because no matter which one you’re on there are side effects…I personally am afraid of them causing dementia or Alzheimer’s….and I don’t ever want to be a burden to my family…at the same time I don’t want another seizure because that does damage too…so you have to weigh the good with the bad and make your own decision…I just wish the stigma would go away just told my family and they react like it’s a death sentence….sick of explaining how common this disease is…the general public needs more education…and more dollars need to be spent on research…unfortunately people feel so bad for people with cancer or diabetes or any disease but when it comes to a brain disease you’re not right… I’ve lived with this stigma all my life…beforeI had seizures I had OCD depression and addiction…but the only person that knows that is my husband… I feel like can’t talk to anyone about it…and dammit it’s not fair…all the sympathy goes to physical illness…not that I’m looking for that …just hoping someday it will change…and I think it’s starting to…

    Liked by 1 person

    Comment by Jody Zimmer — January 20, 2019 @ 6:57 PM

  12. I was going through a bad time, mentally and physically, so I chose to come off my medication to understand what side effects were due to the medication, the seizures or just getting old.

    I wasn’t seizure free and I knew that coming off meds would lead to TC’S but my quality of life was zero and the side effects questions need to be answered and as we all know the neurologists will never admit that there drugs cause the side effects that we experience.

    Liked by 1 person

    Comment by Mark — April 7, 2019 @ 4:20 AM

  13. I can understand.

    You’re miserable, so how much more miserable can you be?

    Or maybe you can feel better.

    It’s a gamble all of us take — or think of taking.

    Like

    Comment by Phylis Feiner Johnson — April 7, 2019 @ 10:00 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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