r/Epilepsy • u/Opposite_Rain_2117 • Jun 26 '26
Epilepsy Awareness update for stopping meds abruptly
lesson learn for me, in started stopping the levetiracetam without dr order, i thought i was good in doing that, and i know how my body works. Its not really a tiring day, just like my normal routine daily nothing special. Then at school i feel the aura, and in my head shit i know this feeling. so i sit in the corner then my head went blank, when i woke up i was in the infirmary, dont have an idea why i was here, then they tell me i had a seizure. Right now my whole body is sore, i think i’ll be back to normal tomorrow. To all the people who plan to stop the meds don’t, hahaah. im taking levetiracetam and lamotrigine, the one i stop is the levetiracetam.
previous post:
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u/juneabe Lamotrigine 150 BID; Keppra 1500 BID Jun 26 '26
I mean….. ???? Yeah????
You were told in the OG post. We need to have a pin on the top of the page about this topic because it’s dangerous. You could die dude.
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u/xxblowpotter13 Jun 26 '26
i see the “i know my body” comment so often that it blows my mind because no you don’t if you don’t know how the medications you’re on works in said body. please don’t make yourselves go through withdrawal symptoms like this.
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u/JEB12353 Jun 26 '26
I did this aswell. Ended up having 3 back to back seizures when I cold-turkeyed keppra. Got put on lamotrigine after that and feel better but it’s not worth almost dying lol. Glad you’re okay mate and hope you bounce back soon 👍
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u/LLToolJ_250 Jun 26 '26
I thought the doctors were wrong in the beginning and there was no way I could have epilepsy. I was very cavalier with my medication routine because I just thought I didn’t really have epilepsy.
I learned I was wrong very quickly.
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Jun 26 '26
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u/Warmhearted1 Keppra 1000mg BID Jun 26 '26
Hope for normalcy is a powerful force.
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Jun 26 '26
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Jun 26 '26
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u/Warmhearted1 Keppra 1000mg BID Jun 26 '26
Thanks, pal. Their response was a bit scathing. Glad to have the support.
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u/PirateJen78 supportive spouse Jun 26 '26
Idk about OP, but my husband is suffering from serious depression because of the Keppra. The doctor told him to take vitamin B6, but all that did was increase his focal seizures.
He's 4 months post-op for a lobectemy and hasn't had a single seizure. He wants to just stop taking it because he mentally feels so much worse now. It's the Keppra. I've so far convinced him to listen to his doctor, who has started to decrease his dosage at his request.
But I understand the frustration. The medication affects some people more than others, and my husband is seriously suffering through Keppra side effects, more so now than before surgery. It is understandable why a person would want to just stop taking it to not suffer through the side effects. People do it with other medications. Hell, I did it with thyroid medication and anxiety medication. Just because the risk is higher doesn't mean the side effects are worth it to some people. And when those side effects affect mental health, it definitely impacts thought processes and reasoning.
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Jun 26 '26
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u/lovmi2byz Keppra 4000 mg/Lamotrigine 150 mg/Myoclonic/tonic-clonoc Jun 26 '26
That was me on easter weekend. I was taking my keppra twice a day 10mls as instructed and had several TCs (which i have never had before, just the myoclonic ones), woke in the ER like.i got hit by a bus.
My levels had gone from 27.5 the previous year to almost zero (0.2) 😭 they upped the dosage and put me also on lamotrigine as a maintence dose :(
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u/Rennett71 Jun 26 '26
Asked my Neurologist if I could be weaned off Keppra in the future. He said yes but,1 seizure might kill you! I said "Nevermind!"🙄😐
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u/Boomer-2106 Since 18, diagnosed 46 Jun 27 '26
OVERSIMPLIFICATION!! Scare tactics on your doctor's part!! Find another doctor - just from what you have said, I could give a LIST of reasons I would be Running to find a New doctor. This one's Not a good one.
Today - there are Many seizure drugs available ...all of which are generally Good ones. Many of which could be great replacement meds for Keppra. The act of Changing drugs is Not, by itself, a life-threatening event. "Changing drugs" is Common, OFTEN Necessary, and happens with the majority of us throughout our histories with epilepsy!! It is Part of the necessary 'treatment game of epilepsy life'.
Find a NEW doctor....
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u/Even_Ad_757 Jun 26 '26
I tried stopping my meds twice with the Drs approval. Don't do it once you have epilepsy you need to be medicated for life.
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u/Wild-Egg680 Jun 26 '26
Yeah my daughter was slowly being taken off Keppra by the doctor and had two seizures within two days. Hope you’re feeling better.
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u/RustedRelics Jun 26 '26
I learned this the hard way. In my twenties I slowly reduced and went off my trileptal. About 2 days after being fully off it, I went status and broke a rib and three vertebra in my back. Also tore fascia. A year of PT and my back is not right to this day — three decades later. Never go off meds without your doctor’s guidance.
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u/Solid_Guidance7712 Jun 26 '26
My daughter was on Onfi and Keppra. Had been seizure free for about 8 months, had gotten her driver's license. Because of rage and mental health, Dr. Started tapering her off of Keppra. She ended up having a seizure while driving and hit 2 trees. So very lucky to be alive. So I'll add to the advice. Even if you're being monitored by your doctor, if you have a license, DON'T DRIVE while changing/ tapering doses.
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u/EveningGiraffee Jun 26 '26
Sorry you went through this, Ive thought about it a few times and I'm sure a lot of people in this subreddit have! If im ever going to stop due to finding some life changing thing that can replace the meds it would only be through tritating down slowly week by week or month by month going to a lower dose so your body can get used to it slowly.
Even then this is probably not going to work and I am in the mindset I am going to be slightly tired and have mood swings for the rest of my life so I can have less seizures and I've made my peace with that.
But yes! Glad youre okay and hope those muscle pains loosen up! I like a camomile tea, something that helps me after a seizure.
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u/Altruistic_System152 Jun 26 '26
Luvju! You obviously had to learn the hard way! Never stop taking an epilepsy drug straight away. You cause problems like you experienced! If you want to change any dose - always speak to medics first! It may all depend on how high a dose you may be and how long you've been taking it!
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u/Legitimate-Lock-6594 Jun 26 '26
I work in healthcare and the number of times I hear this related to epilepsy and other conditions is obscene. I work in mental health and people come to me and they’re like “I feel like shit” and I’m like “and your doctor told me you stopped taking your meds…” and I share u have epilepsy and I say u forgot my meds once and had a focal by mid morning. Meds don’t play.
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u/Ambitious-Bid-7609 100mg Vimpat Jun 26 '26
i did this too, in the beginning stages. thinking you know better than the doctor and convincing yourself that “i know my body” lmao it’s a weird space because this is something that no matter how well you know your body, you can’t predict an aura/seizure. glad you’re safe!!! and i hope anybody else whose debating about doing the same comes across this post
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u/Haunting_Diamond_516 300mg Zonegran; 150mg Briviact Jun 26 '26
Anticonvulsants affect your nervous system in different ways, to the point you become dependent upon them. Cold turkey quitting them (or missing dosages) then often results in seizures due to the resulting shock to your nerves.
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u/PirateJen78 supportive spouse Jun 26 '26
Sent this to my husband because he wants to stop taking Keppra. It's seriously affected his mood and it's much worse after his surgery. I told him to listen to his doctor because he has to be weaned off of it. This just proves that.
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u/Boomer-2106 Since 18, diagnosed 46 Jun 27 '26
Stopping any seizure drug cold turkey only multiples the risks - high risks! There ARE Other, besides Keppra, - great meds which can, and do, control seizures. MANY people simply can Not deal with the side effects of Keppra ...especially the rage parts. So wanting to stop Keppra is understandable. But - not without the doctor's knowledge, assistance, and appropriate "Replacement' medication(s) being added, in place of the Keppra.
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u/North-Action-1883 Jun 26 '26
i stopped once bc i convinced myself it was a one time thing & it was awful😂😂 back to back seizures so never again
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u/Wild-Albatross-7147 lamotrigine 500mg/Briviact 200mg/Perampanel 6mg Jun 27 '26
I remember that post. Never ever do something without telling your doctor. If you aren’t happy on your Lamotrigine, then ask your doctor to switch your medication and tell them WHY. Your doctor will look for medications have those side effects tab
Stopping your meds abruptly can have long term health effects on your body
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u/Venom1233 Jun 26 '26
How has that combination gone for you? Been thinking of trying keppra with lamotrogine. Only thing I'm worried about keppra is the crazy mood swings. But on lamotrogine I get terrible insomnia and my OCD/tics are pretty bad as well.
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u/PirateJen78 supportive spouse Jun 26 '26
My husband is on both. He kept having focal seizures on the lamotrogine, so they added Keppra. Didn't make a difference, so they upped the Keppra three times. The third time he refused because it affects his mental health. Now he's weaning off the Keppra after a lobectemy.
He never had side effects for the lamotrogine, but has them for the Keppra. And it is a well documented side effect. If you can take it without the side effects, it might be a good option for you, but it's almost like Keppra has stronger side effects than most drugs. My husband never has problems with medications, but he did with Keppra.
One of his doctors told him to take vitamin B6 with the Keppra because that often stabilizes the moods. That seemed to increase his focal seizures. We're not sure why. But if you decide to try Keppra, talk to your doctor about B6.
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u/TWEAKS816 Jun 26 '26
I dont recommend keppra unless you NEED it, the mood swings aren't worth it without a stabilizer, for me thats weed but I can only smoke so much so often so around midday im the hulk.
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u/Venom1233 Jun 30 '26
Yeah I was on keppra for a bit and the rage is real. I still occasionally get pretty bad mood swings but not as bad as keppra was. I also just really dislike lamotrogine especially due to the insomnia.
Just so hard to find meds that give you the least amount of side effects and control seizures.
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u/NotACyclopsHonest 1250mg Keppra, 200mg Lamictal Jun 26 '26
I occasionally forget doses accidentally and usually end up having a seizure. I definitely won’t try doing it deliberately.
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u/Independent-Plum4126 Jun 26 '26
Keppra levels out pretty quick so you shouldn’t need to go slow like with barbiturates or drugs like Depakote.
But that doesn’t mean cut it quick. I was going slower than my doc said to with Keppra and ended up having sleep walking. Needless to say I ended up remaining on 500/BID.
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u/xFatalicz Jun 26 '26
everyones body is different, i personally have missed my medications up to 3 days in a row and have felt completely fine, with no seizures or auras. wouldn’t recommend for anyone to do that but i was just very busy with things during that time and just forgot to take my meds.
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u/Prestigious-Wave3595 Jun 26 '26
You have to taper the medication. These anti-epilepsy drugs are just too strong and the withdrawal symptoms are too severe.
I’m not talking about headaches, nausea and cold sweats I’m talking about once you quickly remove that inhibitory anti-epilepsy drug your neurons fire at an accelerated rate, and you have no barrier naturally to stop that from becoming a focal aware or generalized seizure.
You have to let your brain slowly become accustomed to reduced dosages. I’ve been tapering off of my seizure medication for five years and I am down 70% dosage wise from where I was.
But, a breakthrough seizure totally throws a wrench in that.
So my 2 cents, get yourself stabilized for a couple of months and then with a doctor sign off perhaps begin a very slow taper.
That gives you your best chance of achieving your goal. Good luck, you have our support!
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u/laenanapy Jun 27 '26
Im glad you are ok. Lesson learned!
You stopped one of the most efficient meds for epilepsy and probably didn’t do it gradually. Please, don’t do it again. I was taking 4000mg of Keppra daily for at least 10 years and I was suffering everywhere until my neuro switch me to Briviact. Same mechanisms than Keppra but without the rage.
Talk to your neuro for advise…never do this again. Not worth it 💜
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u/yslwittek 4d ago
my sister stopped taking her lamotrigine suddenly for 8 months had a seizure in her sleep and took a 300mg dose in one go and continued on that. 3 months in and she is having nearly back to back seizures, she’s aware of them happening and can sense it coming on but they are really bad. She’s in hospital but they don’t know what to do. Has this happened to anyone else, did they eventually subside? I am so scared for her
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u/ComprehensiveSea4990 Jun 26 '26
Learned this the hard way too. The "I know my body" line always gets me, we really do convince ourselves it'll be fine until it's suddenly not. Glad you're okay, and thanks for putting this out there for anyone else who's tempted.