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Keppra – What People Are Saying…

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.”

“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 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… 

“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.”

Phylis Feiner Johnson    www.epilepsytalk.com

 

Comments

Phylis,

I am so glad you posted this. So many people ask, "how will I react" to such-and-such a drug, and the truth of the matter is that no one knows, particularly with Keppra. I started on a low-ish dose of Keppra almost two years ago, and my doctors kept upping and upping it when my seizures didn't respond, until the emotional side effects really started taking a toll. You're right, as with any drug, it's impossible to tell how it'll react with your body, and how it reacts may change with differing dosages. This is a very helpful post. 

 

Thanks for the compliment, Drowsy.  The thing about Keppra is that it scares so many people off.  All they hear are the bad things (which are a plenty!)

But for some -- those with intractable seizures -- it can be just the ticket.  Personally, I'm glad I'm not on it...I would definitely have to think hard about making that decision.  But that's why it's important to know the pros and the cons.     Phylis Feiner Johnson    www.epilepsytalk.com

I realize Keppra is a horrible drug for many, but formulary Keppra it was the best AED I've been on. I achieved complete seizure control on Keppra, something that has not happened for me with any other AED.

When I was forced to by my insurance company to switch to generic Levetiracetam, I began to experience suicidal side effects and was given Tegretol to replace it.

I now take a cocktail of three drugs where I once took one, and those three together don't work as well as the one dose of formulary Keppra, and they have more side effects. 

I would take formulary Keppra again if I could.  

 

Your doctor can petition with your insurance company to have you put back on the name brand Keppra, especially if you were having break through seizures when switched to generic.  Talk to your doctor, he/she should have petitioned for you right away instead of putting you on a cocktail of three different medications, especially if the name brand was working for you!

 

I've been on Keppra since it was released a few years ago. I have not had the horrible side effects but can't say it is great either. I am on 3 other meds as well and had the VNS implanted in me in 1/09. My seizures have decreased but I still have a few week. I stay in contact with my doctor and see him about every 3 months.

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