Epilepsy Talk

Keppra — What People Are Saying | May 21, 2020

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 this drug 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

 


35 Comments »

  1. Thank you, Phyllis for this post! My son had horrible side effects and they wouldn’t change or take him off of Keppra. The wonderful Loma Linda Epileptalist Dr. Phillip Tseng told him, “This is your life now”. To my son in a wheelchair and unable to string together a sentence. Yep, Keppra rage is real.

    Blessing, gwen

    Liked by 2 people

    Comment by harmonyart1 — May 21, 2020 @ 12:04 PM

  2. Oh Gwen, how horrible! Is there no other med he can be switched to? Or maybe get another consult?

    Liked by 1 person

    Comment by Phylis Feiner Johnson — May 21, 2020 @ 12:10 PM

    • My son is on Dilantin and Trileptal. He’s on hospice now and finally getting the specialized care he needs. I am his caregiver and have Ativan and Haldol meds for the outbursts. The hospice company is great, monitors dilantin levels.. he’s been hospitalized for 8 days for being toxic at 22. He was intubated and sedated twice in a week last May and has gotten so much worse. It caused even more brain injury, in addition to the CTE and TBI seizures. His brain is shutting down in parts, i.e. he has a catheter because he cannot feel his bladder. We have been to nueros and epileptologist in three counties and no help. The request for Nuero psychiatrist referral was denied. Therapists will not see him because of his seizures, nueros say he needs therapy and won’t see him until he has therapy. Primary finally put him onto a great hospice company for his TBI and CTE. Scott is 33. It’s hard, epilepsy runs in the family so he was predisposed anyway. You all are my heroes!

      Liked by 1 person

      Comment by harmonyart1 — May 25, 2020 @ 12:13 AM

      • No Harmony, you are a hero. For being such a wonderful and brave caregiver to Scott, which must be both difficult and heart wrenching.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — May 25, 2020 @ 12:27 AM

  3. It has helped me out and I just saw my doctor and he thinks I’m doing better than a year ago.

    Liked by 1 person

    Comment by Corina Perry — May 21, 2020 @ 12:35 PM

  4. I have worked in a hospital setting for 10 years and I have observed patients who take Keppra for seizure control and I can verify that @ 80% of these patients have the negative side effects that you have mentioned. I would not recommend Keppra to anyone!

    Liked by 3 people

    Comment by J.Lynn — May 21, 2020 @ 1:52 PM

    • As a hospital professional, your experiences are invaluable.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — May 21, 2020 @ 1:54 PM

    • I think working in a hospital would make it very valuable information to how many patience on Keppra show the side affects of rage. They keep trying to put my son on and he already gets combative when he goes into some seizures so there is no way we will try this one. He actually is on CBD oil and it works wonderful.

      Liked by 2 people

      Comment by Barbara — May 21, 2020 @ 9:19 PM

      • What kind of CBD is he on and what dose. I want to get off all drugs and get on this but doctors are not on board so I guess I will treat myself – Mary Jane Levell mjlevell@yahoo.com. Thanks

        Liked by 2 people

        Comment by MaryJane Levell — May 22, 2020 @ 1:19 PM

    • YIKES!!!!! I have to be honest after being put on toperimate the thought of “keppra” was honestly an ABSOLUTE NO GO FOR ME!!!!! The problem was getting or explaining why to anyone until I did try at least the “toperimate” and had to endure the nasty effects of simply trying that!!!!! I waited so long for my last appointment with a neurologist that I gave up trying to even contact him!! Although I sure wish the “MAGIC MEDICATION” would just POP UP!! But the anger and negative side effects I have heard and been told of when it comes to keppra I wouldn’t even entertain the idea of trying it!!!!!

      Liked by 1 person

      Comment by Kathy S.B — May 24, 2020 @ 1:10 AM

  5. I’m one of the “ugly” ones. It would be great if they could identify the groups before they prescribe it.

    Liked by 2 people

    Comment by Lahla — May 21, 2020 @ 3:40 PM

  6. I have had no problems with krappa expet that i have gained weight from it but other then that i like i guess

    Liked by 1 person

    Comment by Anna — May 21, 2020 @ 5:18 PM

  7. Everything I say about this drug KEPPRA is true. I tried it 2 times, and both were a disaster & even suicidal. When about 3 years ago I asked someone who has Epilepsy, what drugs she was taking & Keppra was it. I also asked her if the weak part of her brain was on the L or R side & she said L / left. I then said,, maybe that is why it did not help me as my weak brain side is the right / R. With any drug that FDA & all doctors say we have to take,, very few if any tell if an AED works better with people who have a weak L or R side of the brain, as all AED’s can be prescribed to us as we are just a number or a RAT to these neurologist.So when is there going to be a day when we can look up the AED’s that work best for the RIGHT SIDE & those that work the best for the LEFT SIDE of that side where the brain is weaker ? MAYBE the side which is the weaker side is weak because of ALL the AED’s we have had ? When you had start taking them at 7 MONTHS OLD & you are going to be 60 before you know it, then is it any wonder why AED’s will not help seizures to stop or have less of them, because of the weaknesses if the brain caused by AED’s invading the brain for all of 59 out of years. THEY KNOW how these drugs will ruin an innocent life, & it’s all about a neurologist or a child practictioners job security.

    Liked by 2 people

    Comment by James D — May 21, 2020 @ 5:24 PM

  8. It’s true, Keppra is a tricky drug. I was put on it several years ago when nothing else helped me. It is also a drug I had to get used to the way my body felt and if I am to be very honest, it wasn’t always easy. I did feel changes in my mood, sometimes I was quick to become angry and I’m not usually. I asked a lot of questions. I have more than a few friends who are doctors and I asked them all about my options. Interestingly enough, each of them independent of the other said the same thing! I was going to have to become much more aware of my body because I didn’t have any other options. I watch what I eat, I’ve always been more of a naturalist and I choose calming aromas to diffuse in my home like lavender and I do the same with music to keep myself at peace. I can’t control everything but I can control my home. I meditate practice Diaphragmatic Breathing Exercises regularly and it all helps.
    The thing that has always bothered me is that I will be the last person to tell another person that Keppra is horrible or that is great and the reason is simple. We are biochemical beings and that makes us all very different. It’s trial and error to see what will work and that also means we all have different therapeutic levels if a drug will be successful. Lots of people love Lamictal, it almost killed me my reaction was so severe to it. Go figure! I simply say now I hope all goes well for you and I truly mean that❣️

    Liked by 2 people

    Comment by Janet Ranieri — May 22, 2020 @ 9:23 PM

  9. Funny you should refer to Lamictal, Janet.

    I’ve been on it for 12 years and I think it’s the best thing since sliced bread. (At least for me.)

    So, I never had to go into the Keppra corner. But Janet, like everything else, you persevere and conquer the negatives.

    You are so well grounded and positive, I really don’t know how you do it.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — May 22, 2020 @ 11:36 PM

    • I liked lyrica (which I was put on, until it backfired). My doctor said lyrica was the brand name for “Lamictal”!but when it never worked another doctor said it was more likely because the dosage was too low. I on the other hand have no idea because I’ve never been on anything else except, Dilantin, TEGRETOL Cr, and clobazam (since 2010).

      Liked by 1 person

      Comment by Kathy S.B — May 24, 2020 @ 1:16 AM

      • The generic of Lyrica (pregabalin) is used for the management of neuropathic pain associated with diabetic peripheral neuropathy, for the management of postherpetic neuralgia, as an adjunctive therapy for the treatment of partial onset seizures in patients 17 years of age and older.

        On the other hand, the generic for Lamictal is (lamotrigine). Lamictal is used alone or with other medications to treat epileptic seizures in adults and children. Lamictal is also used to delay mood episodes in adults with bipolar disorder.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — May 24, 2020 @ 10:36 AM

      • Thank you Phylis

        Liked by 1 person

        Comment by Kathy S.B — May 24, 2020 @ 8:25 PM

    • I’m glad Lamictal works for you. It literally landed me in the hospital so there’s the proof we are all very different! LOL

      Thank you for the lovely compliment as well! I have to credit my parents, especially my mom. She taught me very well how to listen to my body and become aware of what I was feeling. After that, I have to say its because I have a therapeutic career and have worked in hospital settings with very ill babies and young children. It would not serve me well to become unnerved. I have always been a relatively calm person anyway. Although now that I am older I find that I don’t handle stress as well as I used to!! LOL Go figure….

      Liked by 2 people

      Comment by Janet Ranieri — May 24, 2020 @ 9:16 PM

  10. I would like to know how many people were surveyed. All the neurologists and scientists can see is being seizure free and by that I mean tonic-clonic I have experience of this. I am really angry. All my suffering has been blamed on my mental health. I know people have real trouble but to blame everything on mental health belittles real people who have chemistry changes in their body with no life of their own

    Liked by 2 people

    Comment by squirrel37 — May 23, 2020 @ 10:08 AM

    • The people quoted were those I researched.

      To have a body which is not your own, combined with alien emotions, must be awful.

      Some people recommend Vitamin B-6 to help with the emotional side-effects of Keppra.

      Maybe you should try it?

      Liked by 2 people

      Comment by Phylis Feiner Johnson — May 23, 2020 @ 10:39 AM

    • I completely agree!!!!!!!

      Liked by 1 person

      Comment by Kathy S.B — May 24, 2020 @ 1:16 AM

    • Hi Squirrel37,

      I needed time to think on what you have said here because it deserves a well thought out answer. I’m sorry if this gets long as well.
      Epileptics in general suffer the consequences of being labeled all kinds of things that can fit into the categories of a mental health illness. Even Absence seizures have some visual element to them it just takes someone who knows what to look for to spot them. However, all seizures are related to something going wrong in the brain giving it the “mental” component. It is biochemical because something just isn’t working properly. A Pediatric Neurologist explained to me and my mom when I was very young and it still makes perfect sense to me today. He told me to think of my brain as the engine of a car. In a car there are spark plugs that need to fire up and send the signals to all the other parts of the car to get the car moving. If one of those spark plugs does not do its job, there will be a misfire and that signal does not get sent to the part of the car that is supposed to get moving or the car won’t start. The same is true in the brain. A seizure is like a misfire. The biochemical signal that is supposed to get transmitted from one neuron to another somehow does not cross and that area of the brain is the affected area. It really is a mental health problem however, is it the type of the dangerous type of mental health problem I believe you take offense to being lumped with as most of us would be? There’s a fine line there. In a very real sense most Epileptics do respond well to some kind of medication fulfilling the problem of a lack of biochemical need in the brain which makes us function. The problem with us being lumped with mental health issues is whether or not we are a danger to ourselves or others and that is a law. If we function well, no seizures, we can drive proving we are not a danger. If not, we can’t drive. It does make sense. Mental health is broad based and I don’t believe it is meant to belittle but I can see how it would make you feel that way. Laws are meant to protect all of us so I’m asking you to try really hard to see if you can look at this a little differently. Neurologists and scientists also look at things in a kind of weird way LOL. Most of them went into their field of choice to help mankind. All too often they treat what they are looking at as if it were a giant petrie dish. Very few neurologists show a lot of compassion but there are some truly wonderful ones out there. They do want to help. Keppra as hated as it might be is a drug that was meant to be a drug paired with another drug because that’s the way it works best. It can be very good. I have taken it with Topamax for over 10 years and have done very well. Not everyone can say this. I avoid judging at all cost. Why? Because we are all biochemically different and what works for me may not work for you. I will cheer you on when you find what does work. Do I have a mental health problem? Yes. Does it inhibit me? Not anymore. I don’t let anything stop me anymore and neither should you. Although I am retired now I still work part time. During my career I have been an Advocate for children with special needs but the line to adulthood is a thin one.When you feel the anger building up, a word of advice if you will…take a deep, slow breath from your belly and let it out slowly, it really helps clear your head. We are here for you always!

      Liked by 1 person

      Comment by Janet Ranieri — May 24, 2020 @ 3:10 PM

  11. I need to say I am not taking kepra People have missed the point I was making I was saying that all doctors think of is being seizure free In that they take seizures omly to be only Tonic clonics If U are not having these you get ignored and even the strength you are taken is not quoted correctly in letters There is no duty of care

    Liked by 1 person

    Comment by squirrel37 — May 24, 2020 @ 5:07 AM

  12. You have missed my point I am not taking kepra Please see my previous statement

    Liked by 1 person

    Comment by squirrel37 — May 24, 2020 @ 5:09 AM

  13. I started taking Keppra about 5 years ago. It has improved my seizure frequency and severity significantly. I haven’t experienced the uglier side effects but like all AEDs there are some to deal with. On the whole I’ve found it to be beneficial.

    Liked by 1 person

    Comment by Ian C. — May 25, 2020 @ 9:12 AM

  14. That’s wonderful news!

    Like

    Comment by Phylis Feiner Johnson — May 25, 2020 @ 11:20 AM

  15. My son was on Keppra for a very short time as it made his seizures horribly worse than before. It was one of the lowest and worst times of our lives. However I have a dear friend whose daughter is on it and does fine. It really depends on the person.

    Liked by 1 person

    Comment by Tami — May 27, 2020 @ 7:26 PM

    • It certainly is a matter of chemistry. Some people do great and some want to dive off the closest bridge. 😦

      Like

      Comment by Phylis Feiner Johnson — May 27, 2020 @ 8:51 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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