Epilepsy Talk

Keppra — What People Are Saying | March 11, 2021

To say the word “Keppra,” is to invite instant controversy.  For some people it works, for some it doesn’t and for others, it’s a living nightmare.

Yet two different studies found that clinically significant behavioral consequences of Keppra were eight percent, no higher, and maybe even lower, than those reported for other new antiepileptic drugs.

John Gates, M.D., lead investigator of the adult study, neurologist at Minnesota Epilepsy Group and clinical professor of neurology at the University of Minnesota said: “The efficacy of Keppra in treating seizures, coupled with our findings of its low side-effect profile, makes it an option that should be considered, especially for those who have struggled with other treatments.”

Interestingly, both studies evaluated patients with epilepsy who were proven to be drug resistant to other medications.

When Keppra was approved as an add-on medicine for partial seizures, including partial seizures with secondary generalization, at the time, it was suggested that Keppra might have a universally positive effect on all seizure types.

That’s all fine and good for researchers who aren’t struggling with epilepsy every day.  But here’s a random sampling of what real people – like you and me – have to say…

THE GOOD…

“KEPPRA HAS SAVED MY LIFE, LITERALLY! If you’re not on Keppra, I’d talk to your doc. Ever since I’ve been on Keppra, I’ve had a 96% seizure reduction rate.”

“I took three medications for eleven years before I was finally given Keppra. I have been seizure free for three years now.”

“I have experienced very, very few partial seizures. I have been taking Keppra since two and a half years now without skipping even one day. I have not had even one ‘confirmed’ seizure since I have been on Keppra and I cannot begin to tell you how very happy I am.”

“Studies that I have read state that mood problems, rages, and suicidal thoughts while taking Keppra are increased if the individual has had previous diagnosis of a mood disorder (depression, bipolar, etc…), however, the side-effect is rare if there are no pre-existing mood disorders.  I have had previous issues with anxiety/panic attacks (not seizure related), and I have had no mood side-effects from Keppra.”

“Using Keppra has even helped me to get out of the deep sense of gloominess and uneasiness that I had felt when I was on Depakote all those years.”

“Keppra has been a Godsend drug for me. Seizure meds are a lot like E itself…so different from person to person. It’s important to be aware of side-effects of the drugs so you know what to look for….but don’t let that overcome what the drug could do for you personally.”

THE BAD…

The list of disturbing side-effects is endless: fatigue, weakness, lack of coordination, mood or behavior changes, depression, anxiety, hostility, restlessness, agitation, hyperactivity (mentally or physically) and the frightening possibilities of having suicidal thoughts or actions.

“Do not mention the name of Keppra in front of me as I get very annoyed and pissed off. It did nothing to me other than increasing my woes.”

“On Keppra, I was depressed and so fatigued I couldn’t see the point of doing anything, much less living. I couldn’t really remember what day it was.”

“The doctor put me on Keppra which did not work so well with me….I have the funny “electric shock” sensations, terrible memory (and I have an excellent memory) to the point I have to write everything down.”

“I have been on Keppra for the past five weeks and my reactions to this drug are dreadful, taking into consideration that I am by nature a very cool and collected person. When I had Keppra, I suffered mood swings from one extreme to the other. I was getting touchy, short-tempered and even turned pretty violent at times. I also felt very tired and unsteady. I read many reviews on the drug and I had started wondering if I was the only one who suffered such terrible effects, and if so, I was wondering if there was something the matter with me and not the drug. You know I am really glad to know that I am not alone with the Keppra side effects.”

THE UGLY…

We all know about “Keppra Rage” and the harmful effects it can have both physically and mentally.  Hopefully, you’ll never undergo what these people experienced…

“My husband was prescribed Keppra about five months back and I tell you, they were some of the most terrible days of our lives. It was pretty effective initially and as the dose was increased the reactions became terrible and unbearable. He felt he was always getting funny feelings, like he was beginning to get a spasm and he was, in reality, getting seizures at every fifteen to thirty minute intervals. After many rounds of talks with the doctor they finally stopped Keppra and within a week, my husband was beginning to feel much better. In my opinion, the drug was practically crucifying my husband in gradual doses. I really think that the FDA must stop its circulation and take this drug out of the market.”

“I have seen people before my eyes taking such drastic steps.  How can this drug be good? It drives you crazy and insane, gives you such depression attacks until you decide to end your life. And all this is very much true, you see. I was on anti-seizure drugs before, like Phenobarbital, but nothing felt like Keppra. What use is a drug that makes you end your life? “

“This medication was given to my husband and he had a severe hostile reaction to it. He wound up in jail for family violence. I would recommend a thorough review of all medications and interactions with medications before taking it.”

“I was put on Keppra and it almost killed me. Initially, I started getting terribly despondent as soon as I started the drug and I reached a stage where I was crying uncontrollably all the time the whole month. I became so terribly depressed that I finally reduced around fifteen pounds and turned into a complete nervous wreck. I tried to commit suicide twice and was some how saved in time.”

“Keppra helped with seizure activity, but the personality changes, anger, hostility, irrational judgments, were worse than the seizures. It has been a living hell. I am the mother and it has been a heart crushing, emotionally draining experience.”

“My husband was put on this ‘drug’ while in the hospital. His personality changed so rapidly and violently that he had to be restrained in his hospital bed. He started having tremors of the arms and legs and physically assaulted me and one of the nurses on duty. He had hallucinations and tore the IV out of his arms because he thought that they were spiders crawling up his arms. All the medical staff said that it was because of the Keppra…. this medication turned him into a raving maniac.”

THE WORST…

The Keppra generic seizure drug – Levetiracetam – is contributing to more seizures, side-effects and even DEATH! 

Patients are experiencing recurring and on-going seizures that did not occur while they were on Keppra. There have been cases of injuries from the drug.  At least 49% of patients noted more severe side-effects such as vomiting and weakness. And, on top of the usual side effects, more intense ones have been documented such as psychotic episodes.

Conclusion

I get so many emails per day regarding Keppra. So much stuff is written about it that I sometimes wonder how much of it is true and how much is not. You need to have some proof and evidence before you can take the authority of commenting on any drug.

In the case of Keppra, I felt that it had diverse reactions on people. Each one had a different opinion. For some it works and for others, it did not. Many of your loved ones may be on this drug, so my only advice to you will be to know the drug properly before making any big decision.

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Resources: Keppra Patients Themselves

Posted in Epilepsy, Medication Issues, Tips
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69 Comments »

  1. For me, Keppra was the devil! Made me suicidal and angry! Also added to my seizures! Be mindful and watch for possible bad side effects!!!

    Liked by 2 people

    Comment by Carolyne LoPatriello — March 11, 2021 @ 11:40 AM

    Reply

    • Keppra worsened my seizures as well. I have to take lithium carbonate now because I have bipolar mood swings thanks to the constant raising of the dosage of that nasty medication. I’m not a mean person… I’m really not. But that medication created me into something, I don’t even know what to really think of myself anymore. It has affected relationships with family and my boyfriend of 4 years, and they just don’t seem to understand. I’ve been on over 6 different meds that never worked for me: Keppra, Topamax, Lamictal, Ethosuximide, Lacosamide, Fycompa, and Vimpat. I just got recently put on Briviact and take Klonopin alongside it, and it seems like my seizures have been… manageable. I also recently started taking B-Complex vitamin, B-6, B-12, Omega 3, Vitamin E, Vitamin D3, and elemental magnesium. Vitamins work for management, but if you have drug-resistant epilepsy like me, it will take a while for you to find the right combination.

      Liked by 2 people

      Comment by Shelby Hager — March 12, 2021 @ 7:28 PM

      Reply

      • Brilliant! Vitamins and minerals can do so much to help you and help your brain.

        Especially B Complex Vitamins. Without a question, they are the star of all vitamins. In sufficient quantities, especially those that combine B6, B12, folic acid, thiamine and biotin, they are vital to the production of numerous brain chemicals.

        Like the neurotransmitters which serve as the chemical message bearers between your nervous system and brain.

        The most efficient way to make use of this “brain food,” is to take it in a B complex form, since this contains all the vitamins in the B group. And when combined, they work synergistically together.

        However, as you’ve discovered for yourself, there’s a whole family of vitamins and minerals that are good “brain food”. That’s why I wrote the following article which I hope you’ll find useful:

        Brain Food for Your Health…
        https://epilepsytalk.com/2017/07/28/brain-food-for-your-health/

        Liked by 1 person

        Comment by Phylis Feiner Johnson — March 12, 2021 @ 8:22 PM

      • You know I keep asking my family doctor, neurologist and even the pharmacist if maybe trying ANY of those vitamins would be better or even help me more than this darn medication. Oddly even for digestion or the stomach I was asking about “turmeric” and I could almost swear it makes them nervous (even though they all say “absolutely not”)!! I kind of laughed one day at them when I threw a question at them. The question was “how about my own natural plants, herbs and everything I grew up being taught to use? I.e. mint, sage, willow bark, and in and on. Everyone one of them them said “NO!! Stay away from them!”. I laughed and told them “well I’m sorry, but I won’t because that is what I was taught by all my great grandparents and grandma and great aunties and great uncles and on and on. I never ever had a problem until I had to take all of the darn medications you keep making me take and not the right one at that as well as vitamins (which technically are plants, herbs and grown in nature as medicinal plants, unpasteurized honey, herbs, spices, and therapeutic purposes). Then asked if they were telling everything I was taught was wrong?”. I never got an answer. I was only made to feel rebellious and on and on. So I don’t bother anymore.

        Liked by 1 person

        Comment by Kathy S.B — March 14, 2021 @ 1:24 PM

      • This should make them think:

        Natural Herbal Remedies for Epilepsy https://epilepsytalk.com/2020/02/15/natural-herbal-remedies-for-epilepsy/

        (Show them the reference links on the bottom.)

        Liked by 1 person

        Comment by Phylis Feiner Johnson — March 14, 2021 @ 1:53 PM

      • Thank you so much Phylis 😊🙏🏼🦬🦅❤️😘

        Liked by 1 person

        Comment by Kathy S.B — March 14, 2021 @ 2:22 PM

      • The funny part is my neurologist was worried because my “BASOFILS” were very low and it concerned her. I just chuckled and told her “aren’t basofils associated with the vitamin c in a persons intake of oranges and on and on? If so then why can’t I just simply take one type of multivitamin instead of 7 vitamins and minerals and still no vitamin B Complex of any sort?”. Thank you Phylis and group for that I greatly appreciate it and all of you!! 😊🙏🏼🦬🦅💗

        Liked by 1 person

        Comment by Kathy S.B — March 14, 2021 @ 2:21 PM

      • Don’t forget to cool it on the citrus. Sometimes it doesn’t interact well with AEDs.

        Also, why would anyone want to eliminate Vitamin B Complex from your vitamin intake?

        B Complex Vitamins are without a question, the star of all vitamins. In sufficient quantities, especially those that combine B6, B12, folic acid, thiamine and biotin, they are vital to the production of numerous brain chemicals.

        Like the neurotransmitters which serve as the chemical message bearers between your nervous system and brain.

        The most efficient way to make use of this “brain food,” is to take it in a B complex form, since this contains all the vitamins in the B group. And when combined, they work synergistically together.

        Brain Food for Your Health… https://epilepsytalk.com/2017/07/28/brain-food-for-your-health/

        Liked by 1 person

        Comment by Phylis Feiner Johnson — March 14, 2021 @ 2:38 PM

      • I completely agree with you!! Which was why I consistently bring it up with every doctor and neurologist and pharmacist I have seen. So I finally figured we’ll time to listen to Phylis and remember my teachings from my old people!! Folic acid is fish food too lol 😂. You can fish all year long too. And stay outside during the summer and get all the vitamin D in the world naturally 😊

        Liked by 1 person

        Comment by Kathy S.B — March 14, 2021 @ 2:55 PM

      • It almost convinces me that the pharmaceutical industry owns the medical professionals too!! And for the longest time I kept telling my doctor “I’m on too much medications and vitamins” and was never heard until I don’t even remember being carried into emergency by my husband. I don’t like feeling or sounding like I’m against the medical community, but honestly they sure make life difficult for those of us who really do need them their at some point in time especially now!!

        Liked by 1 person

        Comment by Kathy S.B — March 14, 2021 @ 3:01 PM

      • I apologize I know it maybe a little off topic however my husband is a diabetic and has problems with blisters on the bottom of his feet and not being able to feel them as well. So our family doctor sent him to the “foot therapist”. The foot therapist “de-breaded” (gosh I hope I spelt that right) and on and on I finally told my husband “I HAVE HAD IT!! NOW we’re going to do thing MY (OUR) WAY that we were both taught from our great grandparents and grandparents!! No more going and doing that it hurts me more than you”. So I went and bought “UNPASTEURIZED HONEY” and bandaids. Washed his foot three times a day then applied the honey and the bandaid then sock and sandal. In few days his foot healed up. Which lead me to feel as though sometimes all the doctors want to do is use us as experimental humans. The foot doctor asked what he did to heal it up so fast and he just told him “I cared to love, learn, listen and watch for myself”. 🙏🏼🦬🦅❤️😘😘😘😘😘

        Liked by 1 person

        Comment by Kathy S.B — March 14, 2021 @ 2:42 PM

      • YOU GO GIRL!!!

        Liked by 1 person

        Comment by Phylis Feiner Johnson — March 14, 2021 @ 2:46 PM

  2. Absolutely awful drug and should not be allowed to be used due to the severe affects anger moods , personality changes drastically and watched my child become a walking zombie on this drug

    Liked by 2 people

    Comment by Kim — March 11, 2021 @ 12:07 PM

    Reply

  3. I’m on Keppra and I like it. Keppra all but completely eliminated my seizures. I went from many a month to 3 non-complex in 2 years – triggered by the same old trigger. It also helped me become a little more assertive – I already was but now I feel charged up – I like it. It’s clearly not for everyone and I wouldn’t want to give it to someone with a tendency to violence or a violent thought process. Kind of like booze or amphetamines – it can bring things out of you which are sitting latent, be it good or bad.

    For me the only negative is: My imagination seems a little crunched. This makes sense to me: intense focus will bring about a seizure in my case, so Keppra makes focusing different and required a little mental retraining. As a musician/artist I found this to be daunting at first but I adapted and my output is back up to it’s pre Keppra levels.

    Liked by 2 people

    Comment by Bill — March 11, 2021 @ 12:13 PM

    Reply

  4. When the first thing your son says after you go off Keppra is “I’m so grateful I got to meet this new dad! He doesn’t scare me like the last guy!”, then you know the drug is a problem.

    Liked by 2 people

    Comment by Ed Lugge — March 11, 2021 @ 12:19 PM

    Reply

  5. Bill, the imagination/focus loss is fascinating to me. But when you think of it, there can definitely be a creative side to the electrical mischief that epilepsy produces.

    Some types of epilepsy can spark inspiration, enhance creativity and bring out the latent artist in you.

    It can be as diverse as literature…music…poetry…painting…drawing…dramatics…architecture…philosophy…or physics…to name just a few.

    Researchers claim that often these surprise talents are associated with temporal lobe epilepsy.

    In this case, the sides of the brain, where memory and feelings reside, are intermittently seized by those “electrical storms” which produce the spark.

    Although the seizures may be undetectable to observers, they can prompt hallucinations, religion, fury, fear, joy and an unquenchable desire to create, even after the seizure is over.

    Like

    Comment by Phylis Feiner Johnson — March 11, 2021 @ 12:20 PM

    Reply

    • I can only say that with the exception of minor brain damage ( I don’t notice it) and wrecking my truck (I was unconscious so I didn’t experience it) – my epilepsy situation has imroved my life in the ways you mention and more. While I don’t discuss epilepsy in the music, epilepsy unquestionably has me thinking and operating in ways that are atypical – and that helps the creative process immensly.

      Liked by 2 people

      Comment by Bill — March 11, 2021 @ 1:23 PM

      Reply

  6. I’ve been on it for at least 7 years and now i take the generic brand of it and not as much as in past years cause my seizures are in better control then it was before the virus. I’m only on 2 meds and take 1500mg 2 times a day now instead of a total of 4000 mg.

    Liked by 2 people

    Comment by Corina — March 11, 2021 @ 12:25 PM

    Reply

    • Did COVID-19 actually abate the frequency of your seizures?

      Liked by 1 person

      Comment by Phylis Feiner Johnson — March 11, 2021 @ 1:09 PM

      Reply

      • I had 3 grand-mal seizures in 1 day when I was in quarantine (didn’t have severe symptoms from COVID because I didn’t get it that bad) and do not remember a single thing from that day. My neurologist did a 3-day take-home EEG after I came back negative, and found that the dead proteins from the virus were hiding in my brain, which was a problem. So yes, COVID did have an impact on my epileptic life, and I have seizures a little more frequently and way more violently now. So thanks to the microscopic amount of COVID-19 that I had in my body, I am on a new medication called BRIVIACT alongside Klonopin, but my doctor says if this medication doesn’t work for me, then she’s going to HAVE to put me on Depakote, or something like it, which would be very bad for me because I’m a female with a fully functioning reproductive system, and they usually only give those meds to males because it doesn’t affect them as badly. Soo I’m technically on my last legs here, so I really REALLY hope this works… because I want to have children.

        Liked by 2 people

        Comment by Shelby Hager — March 12, 2021 @ 7:41 PM

      • Shelby, this might sound radical, but have you ever considered a VNS?

        Vagus Nerve Stimulation…Is it for YOU? https://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%e2%80%a6is-it-for-you/

        Another thing. If You’re Thinking Of Getting Pregnant… https://epilepsytalk.com/2019/11/03/if-youre-thinking-of-getting-pregnant/

        There are several pregnancy registries that track the safety of AEDs…

        Participation is free and the registry will both provide you with information and help the epilepsy community to better understand the safety of AEDs during pregnancy.

        It’s a good idea to contact one of the registries if you have epilepsy and are pregnant.

        A list and links can be found at:

        The Antiepilepsy Drug (AED) Pregnancy Registry http://www.aedpregnancyregistry.org/

        North American Pregnancy Registry http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/seizure-medications-and

        Good luck!

        Liked by 1 person

        Comment by Phylis Feiner Johnson — March 12, 2021 @ 8:32 PM

  7. Reblogged this on Disablities & Mental Health Issues.

    Like

    Comment by Kenneth — March 11, 2021 @ 12:37 PM

    Reply

  8. What you never hear about where people take KEPPRA & have good things to say about it, is the BLOOD TYPE a person has who is taking KEPPRA & have liked taking it. It dies not matter what the AED is where people have good things to say about it, as I believe there are CHEMICALS & DNA MATERIALS IN THEIR BLOOD TYPE that makes 1 drug or a combo of 2 or more make it all work together for the good for them. Lets get a poll or a survey done for people to answer that mystery that I know with having A+ blood for me, never has made any AED & taking any of them a POSITIVE result with taking an AED or combos of 2 or more in the past 12 years worth talking about. There are BIG differences with taking GENERIC v/s BRAND name AED’s besides the costs, and more side effects with generic names always seems to be the case, & MORE METALS & MSG’s along with other EXCITOTOXINS that are found in ALL GENERIC AED’s, and the FDA always say they are as good as BRAND NAMES which is nothing but a lie & a BIG LIE AT THAT.

    Liked by 2 people

    Comment by James D — March 11, 2021 @ 1:29 PM

    Reply

    • I tried to research blood types associated with seizure drug interactions and couldn’t find anything. Very frustrating.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — March 11, 2021 @ 1:45 PM

      Reply

      • You know one day I asked my family doctor “what is my blood type?”. He said to me that he doesn’t know? I would have to ask the lab. So I did when I went in for bloodwork. They said they can’t say but my doctor could tell me. Lol 😂 once again it feels like running around trying to see your tail that you don’t have. So I asked my neurologist and even she didn’t know lol 😂. Honestly yet my youngest daughter donates blood and plasma and I still can’t find out what blood type I am? Gees THATS sad!

        Liked by 1 person

        Comment by Kathy S.B — March 14, 2021 @ 2:02 PM

  9. That was the first drug i was put on, keppra. And when i told my doc that my seizures seemed to be increasing in intensity all he did was increase the amount i took. And my seizures would increase in intensity more. Till one day after telling my doc about a bad seizure he increased it more, then in 2 weeks i got a horrible seizures where i couldn’t move my right hand and arm. I wanted to go to the emergency room to get checked out, but i couldn’t even put my keys in the ignition, that’s how bad it was. So i decided to call my brother to take me. I told them it must be Keppra, since it never been this intense before and we had just increased dosage. They didn’t do much for me and in the ER, trying to sign the release paper i dropped the pen a couple of times and i could barely scribble my name. So one of the neuro’s there suggested i go on dilantin. So i switched and the keppra rage eventually subsided, i could remember times i’d get mad at loved ones when i shouldn’t have. But i didn’t like dilantin from the start. ugh. But that is a whole other story, that drug gave me bad seizures plus visual auras, the type i hadn’t had since the days of my tumor. ugh. After that i went on lamotrigine, which oh my that gave me seizure that wanted to break my neck, type. Very violent type seizures. So the next one i went on was Gabapentine, now there is my drug. Not only has it helped me tremendously with my seizures but it also helps with anxieties. Even though it caused me to have restless legs every now and then in the beginning, i no longer get that. So i’m happy.

    Liked by 2 people

    Comment by Zolt — March 11, 2021 @ 4:29 PM

    Reply

    • Gosh I don’t know how you did it Zolt!! As crazy as this sounds when I feel my legs getting like that I’ll do one of four things. Sit on the floor spread my legs and try and touch my head to my knees separately or lift my legs on a picnic table and stretch them out (hard part is balance sometimes) or lay flat on my back on my bed and put my legs straight up the wall at a 90 degree angle and stretch out that way. Mostly because then I don’t have to really worry about my neck or shoulders. Or tighten my legs (almost like a tippy toe) hold it for about 5-10 seconds and let my legs loose. Sometimes it work but at least I don’t have to hurt my neck or shoulders that way. I hope that gives you some ideas for the future 😊💕

      Liked by 1 person

      Comment by Kathy S.B — March 15, 2021 @ 1:04 AM

      Reply

  10. Boy Zolt, you really went through the wringer. But I’m glad you found Gabapentine or that Gabapentine found you!!!

    Ironically, Lamotrigine has been my magic elixir. 99% seizure-free for 10+ years. (Fingers crossed.)

    Liked by 1 person

    Comment by Phylis Feiner Johnson — March 11, 2021 @ 5:11 PM

    Reply

    • That’s great Phylis, how many drugs did u go through before u found Lamotrigine. At first i was really happy with Lamotrigine since it caused my seizure to go from once a month to once every two month, so that right there made me very hopeful i found something good. But for me the problem was when i did have a seizure it was violent, physically. Then to make things worse my doc told me to increase my dosage and then i had problems breathing, short walks i was gasping for air, so i knew it was the drug and i had to stop. And told the doc to switch me immediately, then he recommended one drug and than switched his mind to give me gabapentine.

      Liked by 2 people

      Comment by Zolt — March 11, 2021 @ 7:20 PM

      Reply

      • I was only on Dilantin, which was a nightmare. But there was no intervention.

        My childhood was pretty messy. Multiple divorces, homelessness, a real roller coaster. So a doc for an “imagined illness” wasn’t high on the list.

        It was 8 years until I went back to the original neurologist, thanks to my dad. And wouldn’t you know that the neuro stuck to the original Dilantin prescription!

        I stopped taking my meds. (Something I tell everyone NOT to do.)

        Eventually, via a psychiatrist, I was directed to an ace neurologist. And finally, after a few false starts (Wellbutrin, Remeron), Lamotrigine was suggested.

        YAY! That neuro had a friend for life. And many years later, he went on to save my life.

        Now, aren’t you glad you asked? 🙂

        Liked by 1 person

        Comment by Phylis Feiner Johnson — March 11, 2021 @ 8:54 PM

  11. Great article!

    Liked by 2 people

    Comment by Pat — March 11, 2021 @ 5:44 PM

    Reply

  12. Drugs don’t help me, I’ve been on everyone on the market, and I had Keppra, I’ve forgotten exactly what happened, lost with all the others, but I had so many physical side effects I was taken off it and recovered

    Liked by 2 people

    Comment by Gail Barry — March 12, 2021 @ 4:38 AM

    Reply

  13. I was on Keppra ( name brand ) for a little over 10 years and was completely seizure free and had no side effects. Then my prescription insurance changed and they wouldn’t cover it, so I had to change medicine and that put me in the hospital with low sodium of 81 . After changing medicine 3 times and almost a year of treatment finally found a medication that is working all thanks to God that lead me to the Epilepsy Alliance of NC and told my story to Patricia Gibson that recommended Roweepra to my neurologist and finally almost a year and half seizure free.

    Liked by 2 people

    Comment by Donna Childress — March 12, 2021 @ 9:28 AM

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    • I am SO PROUD OF YOU Donna!! Congratulations 🥳 🎉🎊💗. I wish all of our epitologists, neurologists and family doctors were like that with me too!! Instead of constantly trying to get me to take KEPPRA which I’m sorry (due to knowing myself) I ABSOLUTELY REFUSE to even try at all ever!!!!!!!

      Liked by 1 person

      Comment by Kathy S.B — March 14, 2021 @ 3:10 PM

      Reply

    • I have the exact same problem with my sodium levels too. Finally my neurologist started to very slowly wean me off of the tegretol but increases the clobazam and left the Dilantin alone. She too wants me to go on KEPPRA or seriously consider surgery (which I won’t lie I am looking into as well, but I’m still not feeling 100% positive yet. As for what your on I have never ever even been offered them or heard of them until now.

      Liked by 1 person

      Comment by Kathy S.B — March 14, 2021 @ 3:14 PM

      Reply

  14. Good for you, Donna. 1 1/2 years seizure-free is a real triumph. Especially in light of all the set backs you endured.

    Congratulations. Here’s hoping your lack of seizures is the continuation of a long and healthy trend.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — March 12, 2021 @ 9:35 AM

    Reply

  15. From what I heard from my neurologist and others is that each one of these epilepsy drugs have different effects on different people. So it’s a trial and error to see what drug helps each individual.
    In my case I take keppra, lamotrigine and phenobarbital. Tried going down on Phenobarbital since it’s addictive but ended up with a whole lot of tonic-clonic Seizures so had to go back to the same dosage to keep them down. The others I went down on dosage but could not with Pheno.

    Liked by 2 people

    Comment by prasadmok — March 12, 2021 @ 12:48 PM

    Reply

  16. Well, that’s some progress…

    Like

    Comment by Phylis Feiner Johnson — March 12, 2021 @ 2:29 PM

    Reply

  17. I agree with all these comments, I went through Keppra rage In My early 20s . It tore me up and my family, I was depressed , fatigued, angry and driving myself crazy, at times anything but happy having normal life. I got into arguments that we’re not necessary and it also made me feel the worst about myself to where I argued & physically fought& got in trouble. My dr didn’t understand any of this & wouldn’t take me off for years until I changed drs to get off from a new neurologist. It just made me have more seizures & my brain worsened in situations, affecting me more than helping in anyway at all. I do not recommend Keppra as a medication to anyone! Horrible outcomes can happen 🙁

    Liked by 2 people

    Comment by Melissa — March 12, 2021 @ 7:50 PM

    Reply

  18. I’ve been on Keppra/Leviteracetim for over 10 years. I’ve also been diagnosed Bipolar II, Borderline Personality Disorder, PTSD just to name a few. I’ve been unmedicated for anything other than my Epilepsy, so with Keppra supposedly being a mood stabilizer I feel that it has been a positive addition to my life. I’ve only had seizures since 2 days postpartum with my 2nd child. I was 23, so I’ve been encumbered with medication therapy this year making 16. It was a major adjustment for a young mother of 2, and shook my home life. As far as the Keppra goes, I don’t have ‘breakthru’ seizures unless I forget a dose. I happen to be on 4,000mg’s daily, yet my episodes were so volatile to my person that I would regain consciousness having lost bowel and bladder, not to mention a partially severed tongue. I’m grateful to be near completely seizure free, and the ones I have are due to user error. I despise pills, be it ibuprofen, tylenol, Xanax, valium. I’m resolute with antibiotic use, yet I only mention it to say It was a very hard pill to swallow that I needed pills to function. I’m just hoping my kidneys hold up. Blessings to All.

    Liked by 2 people

    Comment by Dayna Owens — March 12, 2021 @ 7:50 PM

    Reply

  19. Wondering if anyone has used the rescue medicine Haleigh’s Hope spray? A rescue nasal spray derived from marijuana from a reputable company in Colorado. A friend told me about it and how there were many good testimonials, that it would stop a seizure if used when feeling a seizure may be coming on. I guess it’s been used in addition to prescribed medication and some only use this. Hoping u might have more information. Thank you so much for all you do. In Gratitude, Debra

    Liked by 1 person

    Comment by debra Saphire — March 15, 2021 @ 1:32 AM

    Reply

    • No debra. I only know about Distant which is now available in a liquid oral form that comes in a syringe and goes right into the cheek of the mouth.

      Also, Versed (Midazolam) and Ativan have been approved as antiepileptic nasal sprays. Plus, Versed can be inserted in the side of the cheek.

      Sorry I can’t be of more help.

      Like

      Comment by Phylis Feiner Johnson — March 15, 2021 @ 10:45 AM

      Reply

  20. Thanks for your Keppra stories. Who has had experiences with Carbatrol ER side effects and breakthrough seizures? I’ve been on Carbatrol for Nocturnal Grandmal Seizures for 12yrs. But, the Nocturnal Seizures stopped and the only reason I stay on the 100mg once a day in the morning, is that it keeps the Grand-Mal seizures at bay. I do have occasional break-thru Absence Seizures but no other side effects. I do have severe leg and feet cramps and night and don’t know if this related. The Dr. has not made a connection.

    I am terrified to go thru the side effects of changing to Keppra XR. The Dr. says it covers all seizures and gave me a Generic prescription of (Levetiracetam ER) 500mg, 1 Tablet daily that I have not taken. I also, have to take Brand name medications, Generic does not work for me and this another concern.

    Liked by 1 person

    Comment by Doreen — April 17, 2021 @ 3:24 PM

    Reply

    • Do NOT accept a generic if that doesn’t work for you.

      Insist your doctor gives you a brand name drug. He’s probably going by rote and/or trying to save you expense.

      If need be, get a second opinion. I’m serious about this. You MUST communicate this problem with your doc.

      Like

      Comment by Phylis Feiner Johnson — April 17, 2021 @ 3:49 PM

      Reply

    • I can only say this based upon my Neurologist comments. I do take Levetiracetam 2 – tablets in the morning 2 in the evening each 750MG. I asked him if it was safe to take Levetiracetam. He indicated it would not make a difference and Keppra is expensive compared to a generic. He indicated there are a few drugs where a generic may have any effect but not Keppra. Not sure what other medications you are taking that may have an effect taking generic.

      He also indicated that what drugs work for some people may not work for others. So it’s a crapshoot. You can see his video here

      Liked by 1 person

      Comment by prasadmok — April 17, 2021 @ 7:06 PM

      Reply

  21. Thank you so much prasadmonk for your input. All very helpful and important!!!

    The video is awesome.

    Like

    Comment by Phylis Feiner Johnson — April 17, 2021 @ 8:57 PM

    Reply

  22. Phylis Feiner Johnson, I never had the Keppra rage myself. If there was one irritating part, as has been the case with multiple Epilepsy medications for me, it is short-term memory problems.

    Liked by 1 person

    Comment by ragnarsbhut — July 5, 2021 @ 12:01 PM

    Reply

  23. SUPER!

    Not everyone has “Kepprage”but those who have it suffer and look for possible solutions. Or just to tell their stories and share their perceptions and feelings.

    On memory:

    Because the portion of the brain where memory and emotions are stored — the limbic system — can be disturbed by epileptic seizures, memory problems are one of the most reported problems that coincide with epilepsy.

    The normal processes that the brain goes through in storing memory may be disrupted during an epileptic seizure.

    Loss of consciousness that occurs along with seizures can result in a loss of memory.

    Usually, the memory loss is at the time immediately prior to the seizure, however, there have been exceptions to this.

    People with Temporal Lobe Epilepsy are especially prone to memory loss.

    Because those seizures usually begin in the deeper portions of the temporal lobe — especially the limbic system.

    And since TLE is often medication resistant, the result is memory loss, often coupled with depression.

    Like

    Comment by Phylis Feiner Johnson — July 5, 2021 @ 12:16 PM

    Reply

  24. Phylis Feiner Johnson, that does not surprise me.

    Liked by 1 person

    Comment by ragnarsbhut — July 5, 2021 @ 12:31 PM

    Reply

  25. Phylis Feiner Johnson, just so there is no risk of misunderstanding, I am making a distinction between the reported Keppra rage and the occasional irritation of short-term memory issues associated with the Keppra,as well as all other Epilepsy medications I have had past experience with. The rage I have never felt as is being talked about.

    Liked by 1 person

    Comment by ragnarsbhut — July 7, 2021 @ 7:41 PM

    Reply

  26. My daughter was on Keppra she experienced hallucinations , mood swings , and anxiety although it controlled seizures it did a,mess to her mental well being .At first her doctor said these weren’t side effects of Keppra as I read more and printed out What I read It became clear she wasn’t the only one experiencing this side effects ..They really should evaluate everyone on Keppra and see how it is affecting their mental well being

    Liked by 1 person

    Comment by Anna Hackett — July 12, 2021 @ 6:40 PM

    Reply

    • Anna Hackett, I am sorry to hear that your daughter did not seem to tolerate the Keppra very well. For me, the only irritating part was the short-term memory problems associated with the medication.

      Liked by 1 person

      Comment by ragnarsbhut — July 15, 2021 @ 8:39 PM

      Reply

  27. Phylis Feiner Johnson, there was no Keppra-induced rage insofar as I can recall. The only irritating part was short-term memory issues. Other than that, I tolerated the Keppra quite well.

    Liked by 1 person

    Comment by ragnarsbhut — July 13, 2021 @ 9:01 PM

    Reply

  28. Anna Hackett, I am sorry to read the story that your daughter’s mental state had been negatively affected by the Keppra. Mine had not been affected when I was on it, nor have I had any of the side-effects other than short-term memory problems.

    Phylis Feiner Johnson, the Keppra only caused short-term memory issues as a problem. The other reported side-effects I am blessed to have never experienced.

    Liked by 1 person

    Comment by ragnarsbhut — July 28, 2021 @ 11:46 PM

    Reply

  29. I have been on Keppra since my seizures began in 2016. The doctors immediately put me on Keppra 1000mg daily. The Keppra rage started almost immediately, however it did control my seizures.

    After many months, I discussed this with my neurologist and they put me on Lamotrigine and cut the Keppra to 500mg which helped but not fully.

    I was seizure free for 1 yr and feeling fairly well so she left me decided to leave me on 500mg of Keppra along with the Lamotrigine. The neurologist attitude was “its working lets not mess with it to be safe”, even though I wanted off. I also wanted my drivers license back so I agreed.

    My anger and mood swings continued to worsen until literally today 8/6/21 which I saw myself in rage and I was horrified, it was ugly and it’s due to the Keppra. For me the anger and rage has slowly gotten worse over time. It has crept up on me and is shocking.

    I am going to discuss this with my doctor as its gotten way out of hand and I want off the Keppra permanently. If the doctor would have listened to me in the beginning I wouldn’t have alienated my family.

    Keppra is nasty stuff and it does damage to relationship by way of side effects. When it is prescribed there needs to be a warning about the Keppra rage being a more common side effect.

    Lastly, don’t let your doctor push you around if you feel you need a different medicine. The cost of continuing the Keppra to get my drivers license back was to high. I should have gotten off the Keppra and waited an extra month or two to make sure I was seizure free to get my drivers license back.

    If I had been more assertive and gotten off the Keppra it would have saved my relationships and myself a lot of damage and heartache.

    Liked by 1 person

    Comment by Jeff Kalvin — August 6, 2021 @ 10:12 PM

    Reply

    • As a follow-up to my 1st post I would like to say that getting off the Keppra was the best thing I could do.

      Within a few day I started feeling much better and now after nearly a month I feel like a new person. I only wish I had got off it sooner. My family even notices a huge difference in my personality. No more Jekyll and Hyde.

      Doctors need to emphasize that Keppra can definitely affect your mood in a bad way.

      Liked by 1 person

      Comment by Jeff Kalvin — September 9, 2021 @ 6:30 PM

      Reply

  30. Check your nutrient levels after taking it for a couple of weeks. Check the vitamin levels.
    I believe keppra reduces your nutrient levels check out which vitamin you might need to take.

    Liked by 1 person

    Comment by Daniel Elyolo — September 7, 2021 @ 2:28 PM

    Reply

  31. My daughter was recently put on Keppra to wean off Depakote but her seizures have just gotten worse. The doctor just wants to raise the dose for the Keppra. It’s not at 3,000 mg a day and she’s still having seizures and that’s with a low level of Depakote still there. Why do the doctors keep pushing this med even when it isn’t working?

    Liked by 1 person

    Comment by Becca — July 19, 2022 @ 7:50 PM

    Reply

  32. I’m leaving a comment because I’m at the end of the road with my fiancé. He was put on Keppra last year after a medical emergency and life saving surgery. He has changed so drastically that I really don’t know him anymore. I want you to know I’m a retired nurse so I know what I’m talking about here. He is so paranoid I can’t even talk to him normally now. It’s like he is on a LSD trip legally. I just keep thinking tomorrow maybe will be better but surprise …no. He won’t even talk to his family doctor anymore. Thanks just a senior citizen in Pennsylvania

    Liked by 1 person

    Comment by Sue Detman — August 3, 2022 @ 4:26 PM

    Reply

  33. As far as I am concerned, Keppra is poison. And the fact that neurologists are basically spring-loaded to put people on this awful drug, due to protocols, just furthers my concerns about others out there for whom Keppra is NOT a good drug.
    After having my first of two tonic-clonic seizures at age 51, I took varying levels of Keppra from Apr 2008 – Jan 2018. After trying every available of combination of Keppra plus valproic acid, or Keppra plus trileptal, or Keppra plus [fill in the blank], I was still having partial seizures.
    Finally, I underwent a right anterior temporal lobectomy, as the right portion of my hippocampus was visibly shrunken and clearly malfunctioning, probably due to a hit in the head with a baseball bat as a teenager. After that surgery, I was on Gabapentin and Keppra.
    After I weaned off the Gabapentin, I began to wean down off the Keppra, with concurrence of my neurologist. I was down to 825mg/day – a subtherapeutic dosage and only an occasional aura, but no known seizures – when I transferred to another state. When my new neurologist found out that I was on so low a dosage of Keppra, he freaked out and was insistent that I go back up to 1500mg/day. I started having partial seizures again, particularly when I ingested stimulants of any kind, including sugar! So, I cut back on sugary drinks and cut out caffeine – imagine going without coffee, tea and chocolate!
    I again relocated and my new neurologist switched me to Briviact, which is a stronger Keppra analog. Rather than taking 1500mg/day of Keppra, I only had to take 200mg/day of Briviact. But, I had two minor traffic accidents, so that neurologist told me no more driving.
    I finally moved to our new home and found a Veterans Administration neurologist who listened to what my wife and I were saying. He put me on phenobarbital and, when it reached a therapeutic level, started weaning me off the Briviact. I gradually went from 200mg/day down to 25mg/day, with no ill effects. However, when I tried to quit the drug completely at 25mg/day, I experienced awful anxiety and panic attacks! I couldn’t even draw in a full breath and was constantly asking my wife to hug me!
    I went back on the Briviact at 75mg/day and began weaning down more gradually. I got down to 3.25mg every 3 days and stopped taking any a week ago. So far, so good!
    Long story short, my advice is that if you are still having partial seizures on either Keppra or Briviact, talk to your neurologist about switching to something else. In my case, I underwent brain surgery when it was likely unnecessary!

    Liked by 1 person

    Comment by Lawrence Olsen — September 23, 2022 @ 5:51 PM

    Reply

    • Many people share your opinion of Keppra, but few have the same horror story to relate. I’m so sorry about what you had to go through, Lawrence.

      Like

      Comment by Phylis Feiner Johnson — September 23, 2022 @ 10:08 PM

      Reply

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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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