Epilepsy Talk

Keppra — What People Are Saying — Part 1 | October 15, 2010


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.”

Another article you might be interested in reading:

Keppra Generic Seizure Drug Contributing to More Seizures, Side Effects and Death

http://epilepsytalk.com/2010/07/17/keppra-generic-seizure-drug-contributing-to-more-seizures-side-effects-and-death/

To subscribe to Epilepsytalk.com and get the latest articles, go to the bottom box of the right column and click on “Sign me up!”

Resources:

Keppra Patients Themselves

http://www.healthsofa.com/medications/keppra

http://www.drugs.com/comments/levetiracetam/keppra-for-seizures.html

http://www.rxlist.com/keppra-drug-patient.htm#important

http://www.rxlist.com/script/main/rxlist_view_comments.asp?drug=keppra&questionid=fdb18053_pem

http://stanfordhospital.org/clinicsmedServices/COE/neuro/epilepsy/medicationTherapy/medLevetiracetam.html

http://www.docguide.com/news/content.nsf/news/8525697700573E1885256C8B00542CA8

http://www.drugs.com/keppra.html

http://www.allvoices.com/contributed-news/6322770-levetiracetam-generic-seizure-drug-contributing-to-more-seizures-side-effects-and-death


270 Comments »

  1. Phylis, was it your husband that had to be restrained or was that an e-mail that you received.

    I am on Keppra. The first prescription, my neuro told me to take Vitamim B Complex once a day. I have and I have not had the bad side effects that others have had.

    It has stopped my seizures dramactically. I am glad that I am on it.

    Comment by Ruth Brown — October 15, 2010 @ 7:32 AM

    • Not to worry Ruth…these were quotes from OTHER people. Good that you’re taking a Vitamin-B complex. That’s the heavy hitter in the vitamin-epilepsy world! Along with your Vitamin D. Even happier that Keppra has had positive effects for you. It’s such a crap shoot with these meds…

      Comment by Phylis Feiner Johnson — October 15, 2010 @ 7:13 PM

  2. I take Keppra (500 mg/2 x day) and Dilantin (400 mg/day). I have developed osteoporosis, so my doc and I are discussing dropping the Dilantin and increasing the Keppra. Anyone have experience with this (has it been successful)? Since going on Keppra a year ago I developed a number of side effects (no appetite, fatigue, loss of balance, mood disorders). The drug does reduce my seizure activity. But I’m wondering if I’m predisposed to having side effects from this drug, especially if the dose is increased. Comments anyone?

    Comment by Tom Waltz — October 15, 2010 @ 10:42 AM

    • Well, good that the Dilantin is going. None of us — man or woman — can afford bone loss. But I would question increasing the dose of Keppra.

      You’ve already been on Keppra for a year and had these side-effects. Maybe having it as a monotherapy will improve things. But I doubt it.

      If it was me, I would keep a diary, tracking when you take your meds, when and how the side-effects happen…what exactly each side-effect is…and their duration.

      Then go with the diary to the doc and present your concerns about the Keppra side-effects and surely, you’ll be able to figure out a therapy that works for you without such miserable consequences…

      Comment by Phylis Feiner Johnson — October 15, 2010 @ 7:24 PM

    • I’m on Keppra Twice a day 1000mg and I take a prenatal Vitamin. Plus B12 twice a day. With no side effects. A small seizure once or twice a month. No other side effects.

      Comment by d — December 13, 2012 @ 10:20 PM

    • I take 1500 mg of keppra twice a day and with my Vns implant I have less siezure activity but them I also take valium as a aura reducer
      With no side effects at all

      Comment by Roberto Zapata — September 15, 2013 @ 11:17 PM

  3. I tried the keppra did not work for me. I dont remember the did effects but I was taken of them, later to be put on eitheor something. But I did start out with Dilantain no good, lamicatal im on now with depakote not working, will try vitamin D and E. I dont like the side effects of the two mixed drugs, lots Auras, just really weired crazy feeling I did not have until i start taking these crazy drugs. I have nausea, attitude prob, not myself, cant work. Every Med each its on.

    Comment by Emauel Brown — November 12, 2010 @ 7:40 AM

    • KEPPRA AND DILANTIN WERE MY FIRST MEDS. The first vist neuro visit was me, screaming at my husband in first neuro vist after diagnosis. I was also screaming at him at home. I thought my husband was crazy. At the next visit, I brought in those meds and told him I was now non compliant. He gave me Vimpat and I no longer seized. Oh, I had a few seizures, when sleep deprived, or over stressed, but generally less than seasonally. Off to bed. Meesher

      Comment by Michele Sherrod — November 24, 2013 @ 3:09 AM

    • The Keppra almost ended my husband’s life–and I would have killed him. I had the rage. I was taken off of it when I refused to take it. I lost teeth on Dilantin. The Dilantin turned the bottoms of my front teeth black. Finally, Zonigram was added to my other seizure meds and since December 5th, I have not had a seizure. Sure, I have spent thousands of dollars trying to find a medicine combo that would work for my chemically altered brain. Now I have to ask my husband how to spell seemingly simple words, which had not happened in the past. Now I have to trade of spelling for no seizures. DAMN that neuro for not trying it sooner. I read my hospital records and damn him, he said I was bi-polar. And he will not redact it, when I whined. I am starting a cause of action for failing to correctly diagnose and failure to give a correct medicine combo. Damn him, I have been in a haze for 6 years.

      Comment by meesher@pacbell.net — December 30, 2013 @ 7:28 PM

      • Oh Meesher, you’ve been through so much.

        However, it has NOT dampened your sharp mind. NOTHING could. Or would.

        I’ve seen your intelligent advice and observations elsewhere.

        (Who cares about spelling? I’m right there, too.)

        Comment by Phylis Feiner Johnson — December 30, 2013 @ 8:18 PM

      • I started to have fits back in October 2012 and was tried on a number of drugs where I had a physical reaction i.e. rashes, itchiness, swelling etc.
        Eventually I was prescribed Keppra (April 2013) initially I had no physical symptoms but felt tired all the time. Then the mental issues started. I became very intolerant and very aggressive. On 3 occasions I lost my temper and became very violent. If it was not for the quick footed and quick wittedness of my son I believe my temper was so violent I would of killed him if I had caught him. I have not lost my temper uncontrollably since I was 2 years old so at the age of 59 I found this extremely frightening. The trouble was I did not know if my problems were due to the underlining illness or the drugs I was taking to fix the problem. The professionals were having the same problem.
        I was prescribed another drug and most of the aggressive, intolerant behaviour has stopped. I am now behaving more like a grumpy old 60 year old whereas 2 years ago I was more like a pleasant 45 year old. (I am am now 60).
        The conclusion I have come to is that Keppra works for most people but not for all. When it does not work the professionals have trouble accepting it. The symptoms are very similar to underlying cause of the problem in the first case or they see the patient as a mental patient not as someone who is having side effects of a mind bending drug.
        It is only with hindsight am I aware how much of my depression and general mental health was affected by this drug .

        Comment by David — December 30, 2013 @ 8:47 PM

  4. For me, Dilantin was a nightmare. After many tries, I found Lamictal and, combined with Klonopin, that has been the mix for me.

    As for vitamins, try taking 500 MG of Magnesium to help absorb the Vitamin D.

    I hope the Lamictal works as well for you as it has for me! :-)

    Comment by Phylis Feiner Johnson — November 12, 2010 @ 7:58 AM

    • I too am taking Lamicatal and Klonopin (both generic). I want to stop the Klonopin because I want to have another baby and frankly got tire of being exhausted all the time. Problem is I had another seizure after being seizure free for a long time (about 3 years) after trying to reduce the Klonopin. The new doc added a small dose of Keppra to help stop the seizures. the inital dizziness is going away but I’m still pretty tired. I’m hoping the new doc can help get to the bottom of the problem. I don’t feel like I’ve had definite answers to what is going on.

      Comment by Tennille — November 30, 2010 @ 11:07 AM

      • Who would you recommend to go to for vitamin therapy. I would like a holistic doctor to analyze my blood and prescribe the needed vitamins and doses. Risa

        Comment by Risa — March 9, 2014 @ 9:29 AM

  5. Since August of this year I have been on seizure meds resulting from a severe concussion I got while attacked two and a half years ago. I had my first seizure, which they told me was a complex partial seizure. Initially I was given Dilantin. I didn’t have seizures, but it made me feel like a zombie, and it made me very clumsy. I have since started taking Keppra, or rather the generic version. 500mg 2x a day. It has been really good for me. No more seizures. The only side effects that I have noticed are a bit of a decreased appetite, and what could only be described as “phantom vibrations.” It’s like I feel parts of my body vibrating at times very slightly. Almost, like a cell phone set to vibrate. Other than that, it’s been all good, and I plan on staying on it.

    Comment by radstuffforall — November 13, 2010 @ 6:10 AM

    • I was a zombie on Dilantin also. And it took me a LONG time to find my “magic med mix.”

      For me, that turned out to be Lamictal and Klonopin, but I didn’t have a severe head injury.

      I’m real glad the Keppra is working for you!

      For an interesting on brain injury and seizures, go to:
      http://www.braininjury.com/seizuresandheadinjury.html

      Comment by Phylis Feiner Johnson — November 13, 2010 @ 7:17 AM

    • The phantom vibrating mentioned has been a side effect (among others) I experience too (right at my waist line). First I thought it was my cell phone on my belt. When I went to answer it, there was no phone.

      Comment by Tom Waltz — November 13, 2010 @ 10:00 AM

      • I too have had tingling in the legs related to Keppra; neuro thought it was RLS, but am pretty sure it’s a side effect. Hope/pray it has not lasting effect on synapses or molecular activity…

        Comment by keefer — April 5, 2013 @ 1:26 PM

  6. [...] Keppra – What People Are Saying… | October 15, 2010 [...]

    Pingback by Keppra – What People Are Saying… « Epilepsy Talk | Radstuffforall's Blog — November 13, 2010 @ 6:19 AM

  7. Phylis,I have a question about Keppra? Since I have been on Keppra, I have noticed that I am having bone fractures. Would you please do research to see if it causes fractures?

    Comment by ruth brown — January 16, 2011 @ 1:14 AM

  8. According to http://www.ehealthme.com/ds/keppra/osteoporosis

    “On Jan, 14, 2011: 12,275 people reported to have side effects when taking Keppra. Among them, 34 people (0.28%) have Osteoporosis.

    Time on Keppra when people have Osteoporosis most often appears to be between months 1-6 and then again from years 1-5.”

    That was the only info I could find. How long have you been on Keppra, Ruth?

    Comment by Phylis Feiner Johnson — January 16, 2011 @ 3:16 AM

    • For those who like me are not epileptic and by chance are taking either one of these two poisons, read this.

      I just had a minor scare of a convulsion, that resulted in no meninges inflammation and then abducted illegally in a Hospital for 15 days.

      Just take Vitamins B6, D and K. Your central nervous system is gonna be grateful 4 ever. Do not take the B-complex. That combination takes away all the properties and effectiveness of B6 and B12.

      Take care all.

      Comment by Peter Meca — May 13, 2011 @ 1:38 PM

  9. Wow Peter, that experience sounds really scary.

    On the other hand, thanks for the valuable vitamin info. It’s definitely “news we can use!” :-)

    Comment by Phylis Feiner Johnson — May 13, 2011 @ 1:53 PM

  10. My mother-inlaw has partials then tonic clinic and keppra works well for her. No seizures for 5 years.

    Me, not so lucky. I’ve been on keppra, neurontin and vitamin B for 9 months now and truely have all those side effects you mentioned. I have lost 30 lbs. I’m 5’4″ and now weigh 98 lbs.

    My husband has threatened to leave me many times. My kids are afraid of me. No one knows when I will “go off” And the guilt afterward is when the “bad” thoughts start. We live in a rural area and do have shotguns, my husband has taken them away in fear that I might use them.

    Without any meds I have 20 – 30 seizures a day. With the meds I’m on now I’ve been having 15 – 20 a day. These are simple and complex partials. I still can’t drive or work so I don’t see why I should put up with the bad for a very slight bit of good. I’m usually a happy person! No history of depression.

    My doc is aware and concerned. However, I don’t have health ins and get my meda through PAP so it’s a long process to change

    Comment by cmaclean44 — July 7, 2011 @ 5:07 PM

  11. I don’t know what PAP medical coverage is but clearly you need to change meds, PRONTO!

    Here’s a link that may help you…

    No-Cost & Low-Cost Health Insurance

    http://epilepsytalk.com/2011/01/12/no-cost-low-cost-medical-insurance/

    And maybe this can help, too…

    FREE Prescription Drugs

    http://epilepsytalk.com/2010/10/08/free-prescription-drugs/

    Comment by Phylis Feiner Johnson — July 7, 2011 @ 7:36 PM

  12. I’m on the max dose of Keppra. I know the Keppra rage, so I take anxiety meds along with it. Works for me. My problem is if I miss a dose I end up in the e.r. or jail. It reduces my brain pain to such a level That I dont want to stop taking it. I tried titrating to topamax and thought my brain would explode!

    Comment by Beth ONeil — September 9, 2011 @ 2:09 PM

  13. Ending up in the ER or jail is a pretty heavy price to pay! Have you considered Lamictal or Klonpin to calm you down?

    At its lowest rate, Lamictal is an anti-depressant. At its next level, it’s both an anti-depressant AND an anti-seizure med. And at its highest level, it’s for bipolar people.

    Klonopin is basically an anti-anxiety drug that’s pretty long acting.

    Hope this helps…

    Comment by Phylis Feiner Johnson — September 9, 2011 @ 4:09 PM

  14. I am taking 3,250 MG of Keppra per day, (1,250 0600, 750 1200, and 1,250 1800hrs). Lamictal 450 MG per day (150 0600, 100 1200, 100 1800, and 100 2300hrs.
    I am still having seizures after over 2 years. Sometimes nothing for 5 months but then they will come back. I am going crazy, please someone help me, the doctors are alwyays guessing, I need good info that can help me. Thank you.

    Comment by Ingeborg m. Di Ciccio — September 12, 2011 @ 7:37 AM

  15. Sounds like your docs are taking the easy way out. Just pile them up with pills. Perhaps further testing is needed to pin down the exact area of your seizures.

    This article might help: “Beyond EEGs…Diagnostic Tools for Epilepsy”
    http://epilepsytalk.com/?s=diagnostic+testing

    And, if you live in the U.S. here’s a “Newly Updated Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors”
    http://epilepsytalk.com/2011/05/03/newly-updated-comprehensive-list-of-good-neurologists%e2%80%a6epileptologists%e2%80%a6neurosurgeons%e2%80%a6and-pediatric-doctors-2/

    I hope this helps. Please let me know how do and any other way we can help you.

    Comment by Phylis Feiner Johnson — September 13, 2011 @ 12:55 PM

  16. I have been taking Keppra for 11 yrs. My concern is poor memory it bothers me a lot not being able to remember small things and I used to sing but cannot remember a whole song. Also I have depression and at times it can get overwhelming I take celexa 20 mg but at times my outlook is still very bleak. And I have osteo arthritis. Any suggestions?

    Jodi

    Comment by Jodi — October 17, 2011 @ 1:12 AM

    • Jodi, there are so many add-on meds available, there’s no reason why you should suffer.

      Even though no two people are alike, I take Klonopin and sometimes Xanax and it works like a dream.

      Comment by Phylis Feiner Johnson — October 17, 2011 @ 2:30 PM

  17. I take 1500 mg keppra 2x per day, is that a lot? I feel suicidal 2 or 3 times a week, always tired. I think I had a seizure of being catatonic for about 50 minutes a week ago, is that possible? I’m getting a new epileptologist in Nov., so I’ll ask her, but I would like to hear what others think. I just discovered this site, it’s great, thank you.

    Comment by Steve — October 17, 2011 @ 7:19 AM

    • Partial Onset Seizures

      Adults 16 Years And Older

      In clinical trials, daily doses of 1000 mg, 2000 mg, and 3000 mg, given as twice-daily dosing, were shown to be effective. Although in some studies there was a tendency toward greater response with higher dose (see CLINICAL STUDIES), a consistent increase in response with increased dose has not been shown.

      Treatment should be initiated with a daily dose of 1000 mg/day, given as twice-daily dosing (500 mg BID). Additional dosing increments may be given (1000 mg/day additional every 2 weeks) to a maximum recommended daily dose of 3000 mg. Doses greater than 3000 mg/day have been used in open-label studies for periods of 6 months and longer. There is no evidence that doses greater than 3000 mg/day confer additional benefit.

      http://www.drugs.com/dosage/keppra.html

      Nonetheless, feeling suicidal is NOT great.

      Try keeping a daily seizure diary, noting sleep patterns, what you eat, your daily activities (including upsetting ones), how you feel before a seizure (triggers? auras?), during a seizure, the duration of the seizure and how you feel afterwards.

      This will at least give a clue to the new doc of what you’re going through…

      Good luck!!!

      Comment by Phylis Feiner Johnson — October 17, 2011 @ 2:26 PM

  18. I have taken Keppra for years now and am on the maximum amount 4000 mg of Keppra each morning, 400 mg of Lamictal morning and night, and 100 mg of Zoloft each morning…it has greatly reduced my seizures, but not completely, I haven’t had any side effects…I would love to get off of some of the meds, I have taken litterally EVERYTHING out there and it never worked until this…I even have the VNS and it has helped a little, I’ve not even had it a year though so we have to experiment on the voltage and frequency…I would LOVE to get off or reduce the Keppra, but if I miss one pill I am garaunteed to have a grand mal within an hour or two…

    Comment by Laura — October 17, 2011 @ 3:32 PM

    • Perhaps you should consider:

      Continuous Video EEG Monitoring – studies the brain waves over time. This can be accomplished through continuous Video EEG Monitoring, where a patient stays in a special unit for at least 24 hours. Antiepileptic medication is stopped for the duration of this test, since the objective is for seizures to occur so the abnormal brain waves they produce can be recorded.

      A video camera connected to the EEG provides constant monitoring, enabling the medical team to pinpoint the area where a seizure occurs and track the patient’s physiological response to the seizure. Continuous monitoring can also help distinguish between epilepsy and other conditions. It can characterize the seizure type for more precise medication adjustments and locate the originating area of seizures within the brain.

      Comment by Phylis Feiner Johnson — October 17, 2011 @ 4:07 PM

  19. my son is on keppra and 4 other meds but he is really disabled but i dont think he has any side affects but we just found out his hip is out of place not sure if its from the meds he is on.

    Comment by kelly solly — October 17, 2011 @ 8:21 PM

  20. I’m not a doc, but I don’t think so…

    Comment by Phylis Feiner Johnson — October 17, 2011 @ 10:29 PM

  21. My 16 y/o son was on Keppra in addition to Tegretol, Tripleptal, Epilim & Respiridone. His seizures increased by probably 90% within days. He had approx 12 drop seizures per day – and the resulting injuries from that alone were just awful… skin off knees, elbows, hand & face constantly. He wasn’t having too many t/c seizures before this, but after starting on it he was having follow on seizures so there was never just one. He is now off Keppra with an Epilim increase which has side affect (I believe anyway) of constant dribbling.

    Comment by Rachelle — November 28, 2011 @ 8:59 AM

  22. I’m no doc, but with or without Keppra, it sounds like he’s on an awful lot of drugs.

    Has he had his blood levels checked regularly?

    Comment by Phylis Feiner Johnson — November 28, 2011 @ 12:51 PM

  23. hi! had a seizure at 38 years, 46 years and now at 48 years old..what we have noticed now is these 3 times my period lasted more then 12 days…docs are going the hormone route to see if there is a connection and they think its premenopausal syndrome-great!
    right now i’m taking 1 keppra(750) and 2 dilantins in the a.m.(100each) nightime 1,000 of keppra…however docs feel there is a a connection with long menstruations and seizures…

    Comment by Marge — December 2, 2011 @ 8:49 PM

    • Hi, im only 16 and my period started lasting too long or start early and before i ‘come on’ i found i would be having seizures

      Comment by Elly — November 8, 2012 @ 7:21 AM

  24. marge again– just want to reiterate…if i skip a period then bleed heavily the next month i have to be extra careful…i think docs are getting closer to my problem…

    Comment by Marge — December 2, 2011 @ 8:54 PM

    • It could be hormonal…have you had a full hormone screening done? (The thorough kind that an endocrinologist gives.)

      This hormone blood test for women evaluates hormonal balance in both pre-and post-menopausal women, using a single blood sample. It looks at:

      •Three estrogens – The balance of estrone, estradiol, and estriol.

      •Progesterone – This hormone rises and falls during the menstrual cycle, influencing fertility and PMS, and after menopause it modulates the effects of estrogens

      •Two androgens – Both testosterone and DHEA affect sexual function, body composition, and cognition

      •Estrogen metabolites.

      Another possibility is Catamenial Epilepsy.

      Catamenial epilepsy refers to a pattern of seizure clustering that is related to the menstrual cycle. It does not describe a seizure localization, seizure type, or epilepsy syndrome. Catamenial seizure clusters have been described with every seizure type and epilepsy syndrome.

      The definition of catamenial epilepsy has varied among investigators. The most accepted criterion requires a doubling of a baseline seizure frequency during a specific phase of the menstrual cycle.

      Take a look at Catamenial Epilepsy – Do You Have It?
      http://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%e2%80%93-do-you-have-it/

      I hope this helps you rather than confusing you!

      Comment by Phylis Feiner Johnson — December 2, 2011 @ 9:45 PM

  25. My son had a brain tumor removed with msjor seizures. His doctor has increased Keppra from 1000mg daily to 2000mg a day. Tonight was the worst. I have not been able to work and am self employed and not paid if I don’t work. I worked all day today for the 1st time since surgery (1 month) and left him with supervision all day.I came home he blew up said he was going to run away, I cared more about work than taking care of him, he has been in his room. I have to keep utilities on and his dad us a dead beat dad. I blamed myself then I found this website. Someone please give me advise I’m so scared he’s 15 but still my baby.

    Comment by Sherri — January 14, 2012 @ 8:04 AM

    • I also had a brain tumor, the size of a baseball, i was on keppra first and to me i thought it made my seizures worse. Now i have them once every month or 2 and i’m on Gabapentin. Maybe switch to some other meds, would be my recommendation, but i’m not a doc.

      Good luck

      Comment by Zolt — June 6, 2014 @ 3:05 PM

  26. Welcome Sherri,

    First of all, hormones aren’t helping his situation any.

    But that being said, the brain surgery should have been more successful that that.

    There’s a man on this website (who’s wonderful) who had botched brain surgery about 14 years ago and then very successful brain surgery (at NYU) 2 years ago.

    I know Charlie takes Phenobarbital, but I don’t remember the other med he takes for stability. (Dilantin?)

    But I’ve just emailed him for advice.

    It’s clear your son isn’t on the correct med regime and your neuro must be a block head not to see that.

    Is your neuro connected to your neurosurgeon? If not, perhaps someone else should be consulted about your son.

    Comment by Phylis Feiner Johnson — January 14, 2012 @ 2:48 PM

  27. Sherri, I just spoke to Charlie and here’s what he said:

    I was on Keppra before surgery and my wife says I was explosive. When I started seeing Dr Pacia in NYC he immediately weaned me off it. I was taking 3500 mg.

    He also took me off 3 other meds. The only drug I take now is lamictal (600mg) and a little (90mg) of Phenobarbitol.

    Please tell her not to give up and hang in there. (Who knows,maybe it’s the Dr that’s the problem and not the meds)

    Comment by Phylis Feiner Johnson — January 14, 2012 @ 8:33 PM

  28. [...] To find out what others think and have to say about Keppra, go to: Keppra — What People Are Saying http://epilepsytalk.com/2010/10/15/keppra-%E2%80%93-what-people-are-saying%E2%80%A6-2/ [...]

    Pingback by Keppra Generic Seizure Drug Contributing to More Seizures, Side Effects and Death « Epilepsy Talk — July 13, 2012 @ 10:18 AM

  29. [...] http://epilepsytalk.com/2010/10/15/keppra-%E2%80%93-what-people-are-saying%E2%80%A6-2/ Share this:TwitterFacebookLinkedInLike this:LikeBe the first to like this. [...]

    Pingback by Keppra – What People Are Saying… « epilepsyconnection — July 28, 2012 @ 11:41 AM

  30. HI was wondering if you could adivse me please my daughter is 4 she started keppra a week ago 1ml x twice aday then on saturday she went 2ml x twice aday shes noe started wetting her self all day were as before the keppra had stopped her wetting herself when she has a seizure.

    Comment by sarah — August 12, 2012 @ 2:45 PM

  31. Perhaps you should call your neuro and ask if you could go back to the previous level.

    Here are some moms with similar problems. One switched to Lamictal (which is VERY different from Keppra).

    http://www.circleofmoms.com/moms-of-epilepticseizure-disorder-kids/urinary-incontinence-with-keppra-or-zonisamide-545512#_

    Apparently urinary incontinence is one of the side effects. The question is, at what dose? (I suspect it’s individual for each child.)

    Comment by Phylis Feiner Johnson — August 12, 2012 @ 5:25 PM

  32. I can relate well to anyone who has had bad side effects with Keppra. I was placed on it 18months ago while I was waiting for major brain surgery. I was also taking 1000mg Tegretol. My seizures were occuring about 10 times a month – complex partial seizures – and the keppra didn’t make any difference to that side of things. BUT my personality was completely altered to the point where my 4 children were scared of me because of my mood swings. I also knew what I was doing when I was angry but there was nothing I could do to change the way I felt. When I told this to my neurologist he changed my medication to lamictal and I felt an immediate change in how I felt. I was one of the fortunate people who had evidence of a scar in a part of my brain that could be operated on. I had the surgery last October 2011. Now I am only taking 50mg of tegretol and I have not had a seizure for 11 months.

    Comment by Ruth — September 5, 2012 @ 4:04 AM

    • Congrats on the great success Ruth. I also had a scar on my right temperal lobe, and had it removed in 2001. Seizure free since surgery. Unless of course there during my sleep which I would have no idea. Medical procedures, these days, are amazing!!!

      Take care all……David

      Comment by David Greco — April 7, 2014 @ 6:01 PM

  33. Hurray for you…and your recovery! I’ve never been on Keppra, but I AM on Lamictal and for me, it’s been a life saver.

    Luckily, no side-effects, just good results.

    Did you know that Lamictal acts as an anti anxiety med as well as an AED? That’s one of the beauties of it.

    Here’s to a seizure free life! I wish the best for you…

    Comment by Phylis Feiner Johnson — September 5, 2012 @ 10:43 AM

  34. Abby, have you told your doctor this? If not, I would suggest you keep a daily seizure diary, noting when you take the Keppra, the timing of your seizures, their duration, plus an exact description of what your reactions to the Keppra are and how long they last (if not always).

    I think if you can document your reactions, your doc may get a better idea of what other med(s) might be more appropriate.

    AEDs are really a crap shoot. Sometimes, it takes a while to find what’s right for you.

    I know that I kissed many frogs, before I found my “magical med mix”. (Lamictal and Klonopin, and now I’m a happy camper, with NO side-effects.)

    Comment by Phylis Feiner Johnson — September 30, 2012 @ 6:14 PM

  35. I have been on Keppra for over 2 years and all this time I have never had any problems with it . I have never been on the generic brand ever. In past years I have had problems with other generic brand drugs that I had been on for siezures like Tegretol, Depakote. While being on Keppra I have had a siezure once in awhile but not to often. I’m also on another med beside this and it is called Banzel. I have noticed a few problems with this one at times. Its a name brand that I take,I don’t think they have come out with one yet for this kind yet. I do let my doctor know when I do have problems with it.

    Comment by Corina — October 2, 2012 @ 5:01 PM

  36. Corina, you might be interested in this article:

    GENERICS: IMPORTANT NEWS FROM THE AMERICAN ACADEMY OF NEUROLOGY

    http://epilepsytalk.com/2009/12/22/important-news-from-the-american-academy-of-neurology-of-neurology/

    Comment by Phylis Feiner Johnson — October 2, 2012 @ 6:26 PM

  37. To be honest, i take Keppra for my epilepsy and ive been taking it for nearly a year and no it hasnt stopped my fits but none of the other treatments are working either but Keppra is working a hell of a lot better than the original tablets. Even though my tablets have not stopped my seizures they have decreased, they have also stopped happening in the day time, inwhich i found embarrassing being only 16, they happen in the night time. My mum thinks my seizures occure because of my period and i agree with her, my dad thinks they occure because of stress i also agree with him!! I feel sorry for anyone with epilepsy and i wish them the best, because i know what it is like to be epileptic and not being able to fix it, but Keppra effects people differently so never give up and try different medication as long as it is doctor prescribed because one day it could work! x

    Comment by Elly — November 8, 2012 @ 7:13 AM

    • Sounds to me like you could have “Catamenial Epilepsy.”

      Catamenial epilepsy happens when your seizures worsen just before your period…or during the first few days…or at mid-cycle.

      It’s basically a hormone sensitive seizure — a tendency for increased seizures related to your menstrual cycle.

      The causes of catamenial epilepsy are not totally understood. It could be an imbalance between your two female sex hormones, estrogen and progesterone, or you may not be producing enough progesterone during the second half of your menstrual cycle.

      It is also possible that the amount of antiepileptic drug (AED) circulating in your bloodstream may decrease before menstruation.

      You can read more about it at:

      Catamenial Epilepsy – Do You Have It?

      http://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%E2%80%93-do-you-have-it/

      Comment by Phylis Feiner Johnson — November 8, 2012 @ 10:07 AM

  38. Also Elly, if Keppra isn’t entirely working for you, perhaps you should try a med or a combination of two different meds.

    This is anecdotal, but I spoke to someone yesrterday who was very disappointed in Keppra.

    She ended up changing to Lamictal and Vimpat and, so far, so good.

    And please DO consider keeping a daily seizure diary, noting your sleeping patterns, what you eat and when, every day events (including emotional upsets), the onset of your period, occurance of seizures, how you feel afterwards and, if you can, the duration.

    This will be helpful in both diagnosing catamenial epilepsy and the effeciveness of the Kepra you are taking.

    Comment by Phylis Feiner Johnson — November 8, 2012 @ 10:16 AM

  39. I was on a perfect combination of keppra XR & Lamictal XR. I was able to miss a few doses & not have any seizures.. It worked great together because I have Generalized tonic-clonic (grand mals), absence, myoclonic & Atonic seizures. Then they changed my keppra for the generic ‘levetirecetam.’ If i miss a single dose of it, I’ll have myoclonic & absence seizures for the entire next day. I notice a huge difference.

    Comment by Jennifer — January 24, 2013 @ 3:14 PM

  40. I think it’s really important to be consistent with what you take.

    Which isn’t as easy as it seems in the world of generics. Because pharmaceutical companies don’t all have the same formularies or they change.

    Plus, if I didn’t say it above, generics only have 20% of the prescribed drug in them. The rest can be “filler” of any kind.

    The American Academy of Neurology reports: “The AAN opposes generic substitution of anticonvulsant drugs for the treatment of epilepsy without the attending physician’s approval.

    The FDA has allowed for significant differences between name-brand and generic drugs. This variation can be highly problematic for patients with epilepsy.

    Even minor differences in the composition of generic and name-brand anticonvulsant drugs for the treatment of epilepsy can result in breakthrough seizures.”

    http://www.nytimes.com/2009/12/19/health/19patient.html?emc=eta1&_r=0

    Comment by Phylis Feiner Johnson — January 24, 2013 @ 4:00 PM

  41. Thanks for sharing. My thought is…who changed your prescription to a generic? My insurance company has tried and my pharmacy has as well. In both cases I had to make it clear that changing my Rx (either from a brand name to a generic, or from a generic to a brand name) could result in a break through seizure.

    Comment by Tom — January 24, 2013 @ 8:37 PM

  42. Prevent Medication Changes…

    http://epilepsytalk.com/2011/09/14/prevent-medication-changes/

    This letter has been created by the Epilepsy Foundation to make explicitly sure that no substitutions are made to your prescription without full consent by you and your doctor. You might want to make a copy of it for your files…

    Comment by Phylis Feiner Johnson — January 25, 2013 @ 8:47 AM

  43. My daughter just recently been prescribed keppra. She is 21 months old. NOT EVEN TWO YEARS OLD YET. i feel very strongly about medication as a whole, even more so when our comes to my baby daughter. I wanted other opinions from parents who had top deal with similar situations. I’m taking this very hard. But I’m planning on starting hee on it within the next few days. Please help me with youre opinions.

    It’d be greatly appreciated.

    Comment by Tamara — January 25, 2013 @ 9:15 PM

  44. I think you need to talk to your neuro about possible alternatives.

    There are so many meds and add-on meds out there that it really is a crap shoot.

    I spoke to the guru of Neurology, Orrin Devinsky, and asked why so many people are prescribed Keepra.

    He simply said: “Because it works.”

    These days, it seems to be at the forefront of anti-epilepsy drug treatment.

    But that doesn’t mean it’s right for your little girl.

    You might want to go to the parent’s forum at epilepsy.com where a lot of concerned parents are discussing similar issues. It’s an excellent, reliable resource.

    Topic: Living With Epilepsy – Youth

    http://my.epilepsy.com/forum/118

    I hope this helps…

    Comment by Phylis Feiner Johnson — January 26, 2013 @ 11:24 AM

  45. [...] to try and figure out when keppra (my seizure medicine) originally came out, and i stumbled across this interesting little bit from a couple of years ago.  there was nothing necessarily revelatory about it– i knew that [...]

    Pingback by … so you found a girl who thinks really deep thoughts what’s so amazing about really deep thoughts… « kvetchnik — February 1, 2013 @ 11:57 PM

  46. By the way, I saw this article that says Keppra is no more effective than the older AEDs at preventing bone loss. I mention it, simply because that is the rationale given for moving people off of the older AEDs and over to Keppra in the first place.

    http://www.internalmedicinenews.com/specialty-focus/neurology/single-article-page/levetiracetam-matches-older-antiepileptics-for-bone-protection.html

    Comment by Doug — February 5, 2013 @ 6:03 PM

    • BRILLIANT! Although I did have a little difficulty “joining” the website. But some people say that about us. :-(

      How did you find it? What a terrific resource.

      I appoint you KING FOR THE DAY. (Or week!)

      Comment by Phylis Feiner Johnson — February 5, 2013 @ 7:49 PM

      • Strange…. it used to allow you to view the article without joining.. and now you can’t//

        Comment by Doug — February 5, 2013 @ 11:46 PM

  47. i have benign essential tremour followed up with myoclonic jerk,when medications that family dr. prescribed no longer was effective was referred to a neurologist, am now taking prophanalol with levetiracetam which stopped the tremours that had somewhat come back,then after a couple of years jerking came back mostly in the evening when trying to relaxe,i stew abt things constanly,dr. increased the levetiracetam to 1 in morning and 2 at night helped somewhat but still had jerks in evening,have been going thru biofeedback for allergies since the week crude oil came upon and they balanced that out jerking has stopped excerpt for a mild occurance once in awhile i have always been a stewer but when i t hink back it has been worse ,am wondering if levetiracetam could be involved with this or what

    Comment by Beverly — February 14, 2013 @ 10:23 AM

  48. According to the Epilepsy Center at NYU, anxiety
    nervousness, and decreased ability to cope with daily life events are side-effects of Keppra. So, it could very well be the culprit.

    http://epilepsy.med.nyu.edu/treatment/medications/levetiracetam

    Another resource says: “Keppra (levetiracetam) is a medication used to treat epilepsy and does list anxiety and nervousness as possible side effects.”

    http://www.everydayhealth.com/health-questions/keppra/can-keppra-cause-anxiety-or-jittery-feelings

    And yet another resource said: “According to Drugs.com, Keppra can cause serious changes in your personality. You may become anxious, agitated, hostile, restless or hyperactive.”

    http://www.livestrong.com/article/50680-side-effects-keppra/

    Comment by Phylis Feiner Johnson — February 14, 2013 @ 10:52 AM

  49. Anyone ever heard of a periodic “spaciness or light dizziness” from Keppra? I know dizziness is listed as a side effect, but what I’m talking about seems more transient.

    I’ll be home and seem fine, and then I get out and among others and realized that I feel a little “out of it.” Sometimes if there is alot of busy action around (like with my sisters 3 boys running around) it almost feels like things are happening too fast for me to handle.

    Nothing comes of it, and it usually goes away, and I don’t think its an aura or anything (at least not like I’ve had before), but it got me wondering if it were the keppra, would the feeling be all the time or could it come and go?

    Sometimes, if I drink a caffeinated beverage it seems to help, but that may just be in my own mind..

    Comment by Doug — February 17, 2013 @ 4:01 PM

    • I do tend to “think” many of our reactions could be a bit of our own fears–it’s easy enough to blame Keppra or one of the others since nothing 100% has been discovered yet and you would think that it would have been by now–but they don’t have any trouble charging those ridiculous amounts–do they?

      Comment by Sharon — February 14, 2014 @ 1:19 PM

  50. Doug, there’s this fabulous page that I found where people are talking about their experiences with Keppra on all sorts of levels: doses, effectiveness, comparision to other meds, side effects.

    http://www.askapatient.com/viewrating.asp?drug=21035&name=KEPPRA&sort=timelength&order=1

    They speak of fatigue and confusion but not directly about any spaciness or time distortion.

    Could something else be contributing to that feeling? Or are you on mono therapy?

    Comment by Phylis Feiner Johnson — February 17, 2013 @ 7:41 PM

  51. I’m on Keppra monotherapy. My aura is an extreme lightheadedness where I can’t comprehend when people are talking to me. I just stare at them and then realize 10 secs after they say something that they are talking to me, so its a very specific feeling.

    Of course anytime I feel spacey for any reason, I always double check myself to make sure its not aura-like, but I don’t think this is an aura. Also, like I said, previously, this feeling comes and goes, and I never get to the point where I’m totally out of it, as when an aura is occuring.

    Comment by Doug — February 17, 2013 @ 11:50 PM

  52. I thought that Keppra was OK until my neurologist increased the dose 2 weeks ago! It has been a nightmare with sudden bursts of rage, poor balance, exhaustion and just general vacant feeling? I have now reduced again to see if things improve, I would rather just change meds.

    Comment by mickcgorman — March 3, 2013 @ 1:54 PM

    • I say –go for it! Enough of this added nonsense–
      Why pay more for this crap–sorry you Keppra manufacturers but I’ve got a $50000 hospital bill …

      Comment by Sharon — February 14, 2014 @ 1:27 PM

  53. Perhaps you should talk to your doc before you reduce it. Was there some reason he increased your dose? Or was he just titrating you up?

    Also, it might be helpful to keep a diary, noting times of dose, your behavior, reactions, emotions, etc. throughout the day.

    Perhaps then he/she can get a better idea of what you’re going through.

    Comment by Phylis Feiner Johnson — March 3, 2013 @ 2:56 PM

    • I did call the doctor, it was her idea to reduce slightly, I was still being titrated up.

      Comment by mickcgorman — March 3, 2013 @ 3:41 PM

      • I’m confused. Are you now in the process of LOWERING your dose?

        If so, what effect has it had on you?

        Positive or negative in terms of seizures vs. emotions and behavior?

        Comment by Phylis Feiner Johnson — March 3, 2013 @ 5:20 PM

  54. I had just increased and then I had a few episodes of unexplained rage which worried me, I called the doctor who said to cut back a little and call again after 2 weeks to see if things improve. I must confess that things don’t feel normal yet, a little edgy and odd but I only reduced again 5 days ago. I did have a seizure on the day of the first rage episode? this is all new to me so may be more scary than it needs to be?

    Comment by mickcgorman — March 3, 2013 @ 6:41 PM

  55. I think you were very pro-active in calling the doc immediately and not being a victim and thinking “Oh well, I guess this just comes with the territory.”

    Yes, it could be scary, but if you feel you have things in control — both with your seizures and your emotions — give the reduced dose some more time and see how you feel. Unless it becomes unbearable, again. (Still?)

    Then, do what you did before. Be pro-active and call the doc.

    Hats off to you for taking control of what could have been a very nasty situation.

    Comment by Phylis Feiner Johnson — March 4, 2013 @ 10:27 AM

  56. Hi, my daughter who is 14 years old is in the process of changing her current meds which were epilim and frisium to Keppra. She is still on her full dose of Epilim and a half dose of Keppra. Since starting the Keppra her behaviour has been totally off the wall and she just can not be reasoned with. She is also in Concerta as she has ADHA. She has only been on Keppra for a two weeks but her dose is about to double. Is it possible that this is a side effect of the Keppra (reading the bloggs made me start to wonder) and is it possible this might settle down once she has been on it for a bit longer?

    Comment by Nicky — March 17, 2013 @ 8:51 PM

    • MY ADVIECE IS TO MAKE HER STOP TAKEING KEPPRA! it will do her no good.

      Comment by anonimuss — May 6, 2013 @ 5:58 AM

    • Absolutely! Do not buy it–a wonder drug does not exist–sounds those messy hormones have a thing or two aggravating things for her

      Comment by Sharon — February 14, 2014 @ 1:37 PM

  57. Well, time will tell, although I’m not very optimistic.

    Here’s what other people have said:

    February 11, 2011 by Brenda H

    I have not heard of using Keppra for ADHD. It is supposed to be very effective for mania, although some patients who take it will develop psychotic sx. My ds 16 took it a few years ago and we did not have good results.

    February 11, 2011 by jaime

    My dd has been taking Keppra for a few months. Hasn’t helped ADHD symptoms at all. It seems to be helping keep her moods stable. She is very, very sensitive to the sedation SE, which makes her extremely irritable. We were able to cut her Keppra to 500mg. In the past she usually needed fairly high doses to keep manic symptoms at bay. I am not sure how much is the Lithium, the Seroquel, or the Keppra. She is actually only taking 150 of Lithium. Her blood level is low, only 0.2, but we were using it to boost her other meds.

    She is unable to tolerate stims and is taking the Amantadine for her ADHD. It is actually an anti-viral but seems to be helping fairly well. Her teacher can tell if she misses it and when we were doing it at night for a while her grades dropped signifcantly. It helps with both the hyperactive and fidgity part and the inattention/lack of focus half.

    And, here’s an interesting real world study of ADHD among people who take Keppra. It is created by eHealthMe based on 8 reports from the FDA. In total 17,926 Keppra users are studied.

    http://www.ehealthme.com/ds/keppra/adhd

    I hope this helps…

    Comment by Phylis Feiner Johnson — March 17, 2013 @ 10:30 PM

  58. Generic keppra has different inactive agredients, i.e. aspartic acid (aspertame). TEVA pharmaceuticals did not. I purchase my husband’s generic keppra from there. It works for him, Mylan and others do not. Have to search pharmacies to find which ones can purchase from TEVA Lab. Aspertame and caffeine sets off his epileptic seizures within minutes of consumption.

    Comment by Terry Garlitz — March 28, 2013 @ 1:20 PM

    • That’s fabulous and very useful information Terry!

      THANK YOU for sharing this treasure.

      For those who want to know more about TEVA Pharmaceuticals, here’s what they have to say — “Your smart resource for information about generic drugs!

      Learn more about generics, find alternatives to your current medications, and receive alerts on new Teva generics and tips for safeguarding your family’s health.”

      http://www.tevagenerics.com/

      Comment by Phylis Feiner Johnson — March 28, 2013 @ 3:21 PM

  59. I have been taking Keppra for 43 years & it never effected me like discribed. All drugs have side effects. Different people are effected in different ways by different drugs.

    Comment by Lorraine Konesni — March 28, 2013 @ 2:05 PM

  60. You sure are right, Lorraine!

    Different bodies, different chemistries, and different reactions.

    Sometimes we lose sight of that…

    Comment by Phylis Feiner Johnson — March 28, 2013 @ 3:25 PM

  61. Terry,

    Here’s an article you might find interesting:

    The Scandal of Aspartame

    http://epilepsytalk.com/2009/11/26/the-scandal-of-aspartame/

    Comment by Phylis Feiner Johnson — March 28, 2013 @ 3:28 PM

  62. Well Tom, good question!

    I spent an hour rooting around and I could not find any evidence of generic Keppra containing aspartame.

    Plenty of complaints about Keppra, the same for aspartame, but it doesn’t seem that aspartame is a component of generic or brand-name Keppra.

    But Terry had some brilliant information. (See #8 above.)

    Terry: “Generic Keppra has different inactive ingredients, i.e. Aspartic Acid (Aspartame).

    TEVA pharmaceuticals did not.

    I purchase my husband’s generic Keppra from there. It works for him, Mylan and others do not.

    Have to search pharmacies to find which ones can purchase from TEVA Lab. Aspartame and caffeine sets off his epileptic seizures within minutes of consumption.”

    PFJ: For those who want to know more about TEVA Pharmaceuticals, here’s what they have to say — “Learn more about generics, find alternatives to your current medications, and receive alerts on new Teva generics and tips for safeguarding your family’s health.”

    http://www.tevagenerics.com/

    So, I would suggest you email them (with your zip code included) and ask where you can find their brand of generic Keppra, or if you can just purchase it directly from them.

    Good luck!

    Comment by Phylis Feiner Johnson — March 29, 2013 @ 5:43 PM

  63. I’m new to all of this and still trying to figure stuff out. I’ve had auras since I was 16 when I started birth control. I would get a feeling of deja vu and it would follow with a few minutes of confusion. It was weird, but at that time I just thought I was teenager with lots of changes going on and thought this would eventually go away. Well it didn’t. December before last I was home alone and the last thing I remember doing was cooking dinner when I woke up and found myself in the bathroom floor and had no idea what happened. I told my mom and we went to our family doctor who sent me to a neurologist. I had CT scans, MRI scans, and a 3 day EEG that gave me zero answers. Then last July I had two seizures two weeks apart while at work and was sent to the ER. I was then sent to another neurologist who prescribed me to Keppra. I have NO IDEA what is causing this. My doctor refuses to believe it has anything to do with birth control; although, I’ve read estrogen can provoke seizures. Keppra has made the frequent auras dissipate, but I still get them every now and then. I just had that feeling a few minutes ago, and I still feel very anxious. I’m now 21 and really want to figure what is causing this. I hate not knowing if it’s going to happen again and where I’ll be if it does happen. I wish this would just go away I know live every day not knowing if it will happen while I’m driving to work and am very worried. Keppra has made me very fatigued and have a bad memory. I’ve also gained about 15 pounds. Ughhh

    Comment by Ashley Wickware — April 3, 2013 @ 11:11 AM

  64. Ashley, what I think you’re describing is Catamenial Epilepsy.

    Catamenial Epilepsy – Do You Have It?

    http://epilepsytalk.com/?s=catamenial+epilepsy

    One of the main theories is that seizures around periods may be due to fluctuations in the two major reproductive hormones, estrogen and progesterone, which rise and fall in the menstrual cycle.

    (Love those hormones!)

    The effects of those hormones on brain excitability are at the root of this theory.

    Estrogen seems to be the “bad guy,” lowering seizure threshold, while progesterone is the “good guy,” offering more protection against seizures and increasing seizure threshold.

    Unfortunately, most male neurologists are kind of dense about Catamenial Epilepsy and some don’t even believe it exists.

    (Not to be sexist, but a lot of women prefer either having a female neurologist or at least a woman GYN to be more alert to the possibilities.)

    Another question. What kind of birth control are you are on?

    Many women prefer Depo-Provera.

    “An advantage of taking Depo-Provera is decreased incidence of seizures in women with epilepsy.

    And also, unlike most other hormonal contraceptives, Depo-Provera’s contraceptive effectiveness is not affected by enzyme-inducing antiepileptic drugs.”

    http://www.drugs.com/answers/epilepsy-is-any-one-taking-depo-provera-419427.html

    Also noted in:

    http://www.medic8.com/healthguide/articles/depoprovera.html

    Then, on the on the other side of the coin, here’s a thread from women who had INCREASED seizures with Depo-Provera…

    http://my.epilepsy.com/node/983025

    I also found:

    “The NIH states that while uncommon, some users of Depo-Provera start having seizures.”

    http://www.livestrong.com/article/111266-dangers-depoprovera/

    If I were you (which I’m not), I would keep a menstrual/seizure diary and take it both to your GYN and neuro.

    Find out if there IS a connection between your periods and your seizures and proceed from there.

    (In other words, I don’t think Keppra is the culprit.)

    Also, keep in mind that stress is number #1 on the seizure trigger parade.

    I hope this helps…

    Comment by Phylis Feiner Johnson — April 3, 2013 @ 11:44 AM

  65. Thank you for replying so fast! I have since switched birth control to nexaplanon (sp?) which is progesterone. I was hoping that would fix everything, but I’ve had a couple mild episodes of those strange feelings I get. I’m not sure if it will take awhile to get rid of 5 years of my estrogen birth control. I switched in December and at the time can’t track my cycle, as I’ve been continually going for 4 months. But I am pretty convinced birth control has played a role, since the first time I remember having these feelings was after I started birth control.

    On the stress topic, I’m sure this plays a huge part in my problems. I’ve never dealt with stress well and can feel it inside when it’s building up. Sometimes I feel like I’m going to explode and don’t know how to release that anxious feeling.

    I’ve got a lot of factors that could play into this, so hopefully I can get everything sorted out soon.

    Comment by Ashley Wickware — April 3, 2013 @ 11:54 AM

  66. Do you have any recommendations for a good female neurologist in the Dallas, Tx area?

    Comment by Ashley Wickware — April 3, 2013 @ 3:43 PM

    • These docs were all recommended based on eforum members’ positive personal experiences. Sorry there are no women on the list. :-(

      TEXAS

      Dr. Mark Agostini, University of Texas Southwestern Medical Center, Dallas, TX

      Dr. Jose Cavazos, University of Texas Health Science Center, San Antonio, TX

      Dr. Peyton Delaney, San Antonio, TX

      Dr. Stasha Gominak, Tyler, TX

      Dr. Robert Leroy, Medical City, Dallas, TX

      Dr. Michael Newmark, Houston, TX

      Dr. Padraig O’Suilleabhain, University of Texas Southwestern Medical Center, Dallas, TX

      Dr. Jeremy Slater, Texas Comprehensive Epilepsy Program at University of Texas, TX

      Dr. Charles A. Szabo, University of Texas Health Science Center, San Antonio, TX — Epileptologist

      Dr. Richard Ulrich, Tyler, TX

      Dr. Paul Van Ness, University of Texas Southwestern Medical Center, Dallas, TX

      NOTE: Dr. Charles Szabo has been highly recommended by both women and men.

      Comment by Phylis Feiner Johnson — April 4, 2013 @ 10:00 AM

  67. I have been taking generic Keppra 3000mg daily,Vimpat 400mg daily& clonazepam 1mg daily, I do still have seziures had one last night G-mal although they seem less dramatic for lack of better word! Oh I have been on meds for 2 1/2 yrs, I have petite mal seziures as well I would say 70percent of the time, I’m unable to speak a lot,memory loss, coordination problems bout overall I do feel better most of the time, my only complaint is I get sleepy most days around 1 and must sleep. What can I do to have more energy? And should I be taking something like a vitamins for long term problems I’m a 36 yr old woman

    Comment by Jaime Balbas — April 3, 2013 @ 9:51 PM

  68. I’m being treated for migraines and generalized bilateral epilepsy, or that’s what my neurologist THINKS it is. I’ve been taking it since January of 2011 and I used to be a little unstable with my emotions. For the past two years, I’ve been completely drained with depression, anxiety, angst, hate, anger, and just about everything. I feel like most of my high school career was ruined from this drug as I took one in the morning and two at night 500mg each as a total of 1500mg a day. I’m seeing a new neurologist to get a reevaluation of my epilepsy and now slowly stopping my pills. I believe I was treated with the wrong medication and I already feel somewhat better after only four days of taking two pills a day. There were no happy thoughts in my head anymore, only suicidal thoughts, pessimism, and hate. I’m glad to finally find out why I’ve had such major depression from nowhere that couldn’t be effectively treated.

    Comment by Andrea — April 7, 2013 @ 11:00 AM

  69. This article was very helpful in learning more about the new medication my foster son has been prescribed. Even though I am new to dealing with an epileptic, I have made it a point to learn about each of the meds he is on, and be totally aware of their side effects.

    James has been on Keppra for one week, and so far the only seizure he has had was my own fault because I missed a dose of meds and he was 4 hours late. On that side of things, I am fortunate that we have found a pill that is working to stop seizures.

    Unfortunately, it has been an interesting week in terms of dealing with his changes in mood and spells of aggression, as I have outlined here: http://mrscotto.wordpress.com/2013/04/09/keppra-the-follow-up/

    I have been monitoring the side effects closely. Today was a good day with no outbursts, but we will be taking this one day at a time.

    Comment by Scott Oosterom — April 10, 2013 @ 12:41 AM

  70. I read your post, and unfortunately aggressive and abusive behavior can be one of the “side-effects” of Keppra. (As you’ve learned yourself.)

    And it could get worse as he titrates up to a stronger dose.

    Scott, I think you’re doing the right thing.

    Now, try to document his outbursts (and any causes you can figure out — other than the Keppra) so you have something to show the doc and hopefully, he/she can get a better idea of what’s going on.

    He may need a second med to offset the Keppra aggression or as you said, Keppra may not be for him.

    Comment by Phylis Feiner Johnson — April 10, 2013 @ 9:19 AM

  71. Hi, I have just started keppra as an addition to my epilem medication as the epilem wasn’t controlling my seizures anymore.

    I was just wondering at what dosage and how soon after people had started taking this medication did they begin to see the any side effects.

    Thanks for your help

    Comment by Mel — May 5, 2013 @ 10:25 PM

  72. hi world,
    Im on keppra for a year or so.
    before takeing it I use to get GS once in two years. now that has been changed to 8 or more times in only one year. for the time Im takeing this “thing” (keppra)it doest end just with that. Side effects are more fun. Its feels like nothing have sence any more in my life. Im trying to hide that from others (home,work,friends ect.). Most times, while doing so, it ends as if Im histericly happy. Keppra is not helping me in any way exept for neverending hiper inteligent toughts that comes to my mind, from time to time. Im finishing my master at university with ease. After I do that I will stop takeing keppra , no more fun I guess :)

    Comment by anonimuss — May 6, 2013 @ 5:47 AM

    • That’s interesting that you blame Keppra for those intelligent thoughts–so that’s why I’m good at Scrabble (just another joke) we just have to deal with the multitude of crap attached to this

      Comment by Sharon — February 14, 2014 @ 1:44 PM

  73. Why not stop taking it now?

    Comment by Phylis Feiner Johnson — May 6, 2013 @ 6:33 PM

  74. I am so glad I found this site, I know now that its not just me but the Keppra I started just one week ago that has made me go into a deep depression and hostile personality. Last night I was very suicidal and cried all day today. I will call my doctor tomorrow and get my medicine switched before it cost me my life. I literally feel like I am going crazy!

    Comment by tlanclos — May 8, 2013 @ 3:12 AM

  75. Oh I feel so awful for you and what you must be going through.

    But the good news is that you recognized the symptoms early and are being proactive about it.

    And I’m grateful that the article was of help to you.

    That makes MY day.

    Comment by Phylis Feiner Johnson — May 8, 2013 @ 10:29 AM

  76. I have been on Keppra for 2 months, and I am always tired, and the world seems like a haze. My coordination is no longer there, and I can’t think straight. I had 1 seizure in my life and I want to tell the doctors to shove all these drugs! I can’t walk through life like this. I am 45 years old, never had issues until my seizure a few months ago. I truly can not take this lifestyle change.

    Comment by RK — May 12, 2013 @ 8:30 PM

  77. Either dump the doc or dump the Keppra. Either way, call him/her immediately.

    There’s absolutely no reason why you should suffer these side-effects.

    If you decide to seek another opinion, or another doctor, this link may be helpful…

    2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

    http://epilepsytalk.com/2013/01/02/2013-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

    I’m sorry you’re going through this, but you DON’T have to.

    Comment by Phylis Feiner Johnson — May 13, 2013 @ 7:16 AM

  78. Obviously Keppra is known for causing some people to experience physical fatigue and “run down” feelings. However, has anyone seen this effects get worse over time? I feel like I’ve always had fatigue from Keppra, but I’ve forced myself to exercise and get out anyway. Lately (the last few months), it has been worse, and MUCH harder to have any stamina. Also, my sleeping has been worse (although never good on Keppra, it has also gotten worse).

    When I asked my neuro about this, he said that he didn’t think it was Keppra, as the fatigue would be pretty constant from the beginning and would not have gotten worse. Same for the sleep issues. Of course I heard this before with regard to delayed onset rashes from tegretol (told that couldnt happen either) and that turned out not to be true. So, I just wondered if anyone has experienced worsening fatigue and sleep issues after having taken Keppra for a long time?

    Comment by Doug — May 14, 2013 @ 7:08 PM

    • Yes! Although I have only been on it for 6 months or so, I felt there was a build up of sorts going on and I became increasing fatigued and unable to exercise. I was up to 2000mg a day but I am now tapering off.

      Comment by Jeanne Adams — June 7, 2013 @ 2:37 AM

  79. I take Keppra and it works like a charm and I don’t have seizures

    Comment by razzle51 — May 19, 2013 @ 9:27 AM

    • That’s wonderful news and YES, Keppra does work for some people. It’s all a matter of body chemistry.

      I’m glad to hear you’re one of them for whom it works!

      Comment by Phylis Feiner Johnson — May 19, 2013 @ 9:41 AM

  80. I am currently taking keppra 1500 mg 2x daily. Topamax 300 mg 2xdaily and lamictal 100 mg 2x day . I started having memory issues and depression. I thought it was due to the topamax because it wasa fairly new med.(even though they were both started around the same.)I was an outgoing person, that loved talk with people . Now, I don’t like to leave my house, and don’t talk to very many people. Depression has controlled my life.Anger is an ever day occur acne for me.

    Comment by Tricia — May 28, 2013 @ 9:17 PM

  81. Was the Keppra the newest of the three meds for you? If so, it’s easy to target it as the culprit. Because there’s more than one piece to this puzzle.

    I would definitely write down your mood(s), feelings of anger and isolation, depression and whatever other negative effects you’re feeling and take your list to the doc. (Writing them down beforehand helps organize your thoughts and assures that you don’t forget anything.)

    Tell him what you’re going through (hence, the list) and ask him for an alternative.

    Keppra isn’t for everyone and obviously, it doesn’t seem to be for you.

    But there’s no reason you should suffer in silence!

    Comment by Phylis Feiner Johnson — May 29, 2013 @ 9:41 AM

  82. Hi! I’m very pleased to find this site! I have had epilepsy since I was 7 years old, I am now 55. I was on a variety of not very effective drugs as a youngster, I was frequently tired and grumpy. Depakote was introduced to me when I went into college, 1979, and it controlled my seizures beautifully for many years. Then, in 2004, several components combined to make a ‘perfect storm’ and I had a grand mal seizure while driving. Thank god for airbags! I walked away without a scratch and did not do damage to another car or person, (just that fence!) So my Depakote was doubled to 500 mg ER x twice a day. All was well for several years and then I was sent to a new dr, an epileptologist, who did my first mobile EEG. It lasted 3 days, there was practically NO seizure activity on it. I had to point out to him where I thought the one seizure had occurred. It was so short, he thought I had scratched my head and made the lines jump. Anyway, he put me on Keppra in addition to the Depakote. I was taking 2000 mg a day, I think. I felt so profoundly depressed, drugged, drowsy, clumsy, foggy and irritable that I cut way back on driving and have started a disability claim at work until I can get the dose down or stopped completely. I have been taking the generic and have wondered if the brand would be better but I’m over it now. My seizures are so short and minimal I don’t even think I need a second anti-convulsant. But I trust this new doctor since he is a seizure specialist. The doctor that I went to for 30 years or so was a neuro. I have not had any luck yet having the office fill out the Short-term dis paperwork, sure hope they’ll do it!

    Comment by Jeanne Adams — June 7, 2013 @ 2:34 AM

  83. Welcome Jeanne. And welcome to the crashing into inanimate objects club.

    The first 10 days after I got my driver’s license, I smashed into 6 things.

    When I finally went into a cement pillar in the parking garage, I handed my mother the keys and a check to repair the body work. (Yes, I did make it that far.)

    As for your new doc, just because he’s an epileptologist, it doesn’t mean he’s God.

    And I think his actions are conflicting.

    He said he saw no activity on your EEG, yet he put you on a second drug. (Keppra, no less!)

    What is the rationale for that? Have you asked him? I certainly would.

    In my humble opinion, he’s not the doc for you. He sounds like an inattentive pill pusher.

    Can you return to your old neuro?

    If not, here’s a list that might help:

    2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

    http://epilepsytalk.com/2013/01/02/2013-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

    Best of luck and I hope you’re back to your “old” self soon!

    Comment by Phylis Feiner Johnson — June 7, 2013 @ 8:59 AM

    • Thank you, Phyllis, for your quick response and your input!

      Wouldn’t you know it, his name is on that list! I think he is a good doctor, he based his decision on the fact that I was reporting having some very small/short absence seizures on an almost daily basis.

      I think he thinks they could lead to something bigger. But I have always had them and I don’t think that’s the case. My old neuro shuddered (pun intended) at the word seizure!

      And so it goes…

      Thanks again!

      Comment by Jeanne Adams — June 7, 2013 @ 9:28 AM

  84. I still think you’re over-medicated and you should discuss this with your doc.

    Comment by Phylis Feiner Johnson — June 7, 2013 @ 10:18 AM

    • Oh, yes! We are reducing the Keppra now and I may be going off of it completely.

      I wonder if part of the reason for the small percentage of reported side effects of Keppra isn’t that many people with epilepsy are accustomed to feeling fatigued and depressed, anyway. Many may not attribute those feelings to the drug.

      I am very fortunate in that I finally found a good medication for the clinical depression I also have. So when I began having those feelings again because of the Keppra, I knew something wasn’t right.

      Comment by Jeanne Adams — June 7, 2013 @ 11:02 AM

  85. I take Effexor for clinical depression + Lamictal + Keppra.

    I realize no two people are alike, but that my magical med mix!

    Comment by Phylis Feiner Johnson — June 7, 2013 @ 11:18 AM

  86. they put my husband on Keppra as a result of slight seizure after a bout with bacterial menigitis . Even while he hasnt had any major seizures he is not the same person and I feel hopeless to change it. he needs it to control any seizures he might get but his personality is totally not him. I cry a lot pray a lot and generally feel hopeless as to what to do. hes mean aggressive everything this nice person always was. I sometimes feel as if I should stay in bed as there is nothing to get up for. So depressed am I

    Comment by peg cheeseman — June 13, 2013 @ 11:52 AM

  87. First of all Peggy, you’re not a member of the “club” until you’ve had two seizures.

    Has your husband had diagnostic testing?

    Beyond EEGs…Diagnostic Tools for Epilepsy

    http://epilepsytalk.com/2010/09/13/beyond-eegs%E2%80%A6diagnostic-tools-for-epilepsy-2/

    What’s the reason for Keppra? There are a zillion other meds out there.

    I think you should pay your doc a visit…PREPARED with your questions.

    Secrets to Better Care from Your Doctor

    http://epilepsytalk.com/2010/06/13/secrets-to-better-care-from-your-doctor/

    This sounds horrid and unnecessary. There’s no reason your husband (and you) should have to live like this.

    And if all else fails, perhaps you should get a second opinion or change docs.

    2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

    http://epilepsytalk.com/2013/01/02/2013-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

    It’s a compilation by website forum members who have had positive personal experiences with docs over the years.

    Perhaps this can help. Good luck.

    Comment by Phylis Feiner Johnson — June 13, 2013 @ 1:54 PM

    • yes he has had more then 2 seizures and yes my daughter and I have talked to the dr. we came away with the knowledge that since he has to be on something for the rest of his life this was the best med out there for him . just dont know what to do, but am so unhappy. thanks for listening

      Comment by peg cheeseman — June 14, 2013 @ 8:35 AM

  88. Keppra DOESN’T have to be that only “something” that works for him or “saves” him!

    Try another drug. Your choice is endless.

    (I personally think this doctor is being lazy. Take a band-aide, patch it up.)

    Has your husband had the diagnostic tests I mentioned above?

    Just don’t take the doc’s word on it on blind faith…

    INSIST!

    Comment by Phylis Feiner Johnson — June 14, 2013 @ 11:36 AM

  89. I can only speak of my experience with Keppra. It was terrible, it increased the frequency & intensity of my seizures. I was never suicidal however, I felt all of the other negative side-effects. A Neurosurgeon was enraged to hear I had been prescribed & demanded to know who did it.1 year later I am working again & just taking Epanutin ( my old med) twice a day. Keppra is a wonder drug for many, a nightmare for others. If you were fixing a car or, getting some building work done you wouldn’t just get 1 quotation.Always get a second opinion. You only have one brain. Don’t be a guinea pig. If a cure existed we’d all be cured. The experts still don’t know why seizures occur. Check out the list of famous epileptics, some of the most iconic figures in history.Just because they wear a white coat doesn’t make them smarter than; Isaac Newton, Thomas Edison, Aristotle, Charles Dickens, Leonardo Da Vinci. The list is 100′s long. Take care

    Comment by Josh Garrett — June 18, 2013 @ 8:23 PM

  90. I take 750 mg of Keppra twice a day. Last Saturday I forgot to take my morning dose. This also happened a year ago and I had a seizure. So, when I discovered that I had missed te morning dose later that evening, I took my normal amount (750 mg) plus an extra half dose (375 mg). The next morning I did the same just to be sure my blood level was theraputic. Since then I have felt toxic (dizzy, poor balance, headache, fatigue, foggy headed). Has anyone else experienced this (or something similar)? Does the blood level eventually “self correct” after a few days, or did you find that you needed to reduce a little before going back on your normal dose? This is a little scary and very annoying. Oh, I came up with a way to avoid this in the future…I attach my tooth brush to my pill box using rubber bands. Whatever works, eh.

    Comment by Tom — June 19, 2013 @ 1:11 AM

  91. Its best that you only take your normal amount if you have missed a dose. Not extra especially if its close to time to take your next dose cause that can really throw your levels off. I’ve had that happen to me a few times and my doctor just told me to skip the missed dose and go back to my regular schedule if was close to taking my next dose. If was just a few hours off then it was ok to take my missed dose but not real close to the next dose time.. Hope this help you out.

    Comment by Corina — June 19, 2013 @ 10:34 AM

  92. Corina’s completely right.

    There will still be a enough of the med in your blood stream to carry you through.

    The same thing happened to me with Buspirone.

    I was out of it for 3 days because the insurance company would not “honor” my “early” request.

    In a panic, I asked my pharmacist whether I should slowly titrate up and he explain why it wasn’t necessary.

    If you’re still uncomfortable, call your pharmacist. He knows more than you think!

    Plus, it’s a free consultation!

    Why Your Pharmacist is Your Best Friend
    http://epilepsytalk.com/2013/02/20/why-your-pharmacist-is-your-best-friend/

    Comment by Phylis Feiner Johnson — June 19, 2013 @ 10:53 AM

    • Thanks for your feedback. Now, what to do about it since I’m still feeling side effects in the afternoon hours. Any suggestions?

      Comment by Tom — June 19, 2013 @ 7:12 PM

  93. Either call your pharmacist or ride it out. You’re probably a little bit “over dosed”!

    Hope you’re feeling better soon!

    Comment by Phylis Feiner Johnson — June 19, 2013 @ 9:32 PM

  94. My name is elijah green it is my first time on keppra and right now i am sleepy week sometimes headace most of the day i had a grand mole seizuer first one dont feel like i am going to hert myself or nobody eles thinking is slow and on insulin fist time i walked in the hospitel i was1375 no joke it was in fargo north dakota i just thank god i am still alive

    Comment by elijah green — June 20, 2013 @ 2:20 PM

  95. I’m sorry that you’ve gone through so much suffering. but I am happy that you’re still alive also!

    Comment by Phylis Feiner Johnson — June 20, 2013 @ 2:26 PM

  96. My boyfriend was in a serious motorcycle accident and had cranatomy surgery. He is recovery extremely fast but his main struggle is aphasia, his speech. I’ve been doing research on the drugs he takes. He is on 3 different seizure meds right now, keppra, devokote, and I’m not sure the name of the other one but its taken in 3 little white pills. He takes all these twice a day. He has never had a history of seizures before his accident. He has only experience 3 seizures in the past 3 months. I feel like he is on too many meds, he is always tired and cranky. He can be in a good mood and you do one thing wrong and he snaps, depression, and also suicidal comments. It’s hard to know ex actly how he feels on these drugs because of his aphasia but to me he doesn’t seem very happy. It’s hard to be around him sometimes cause he is so mean and there is no reasoning with him. This is not like him at all. He’s normally very outgoing, loving, and easygoing. It’s hard to say its keppra since he’s on two other meds but I believe he is having the horrible side affects! I want him off these meds! :(
    We have been together for 5 years and I am only 21, I just want my boyfriend back!

    Comment by Paige — July 5, 2013 @ 12:14 PM

    • I would try to keep a diary of when he takes his Keppra and the behavior following it.

      Then take it to his doc.

      It could most likely be the Keppra.

      But, since it’s difficult for him to communicate, you have to be the observer.

      Then ask the doc if there’s an alternative med he could take, citing your observations.

      Keppra seems to be the first line of prescribing these days.

      But that doesn’t mean there aren’t many other options available also.

      And you know, in a way, your suffering may contribute to his anger and outbursts. Frustration, you know?

      Who’s to say? But for your own sanity, you have to get this problem fixed.

      Here’s an article you might want to read before you go to the doc:

      Secrets to Better Care from Your Doctor

      http://epilepsytalk.com/2010/06/13/secrets-to-better-care-from-your-doctor/

      Good luck…

      Comment by Phylis Feiner Johnson — July 5, 2013 @ 4:31 PM

  97. I am on Keppra xr due to having 8 seizures. I absolutely hate it. I feel
    Drunk all the time. I have muscle spasms and twitches all day, I itch, grind my teeth and my gums are swollen, I’m uncoordinated and have vertigo, pressure around my eyes and ears, my throat feels scratchy and its harder to swallow, I have headaches, anxiety, no strength, can’t function, my memory is horrible, I’m an emotional wreck and cry a lot, very depressed and frustrated, I have a constant shake, disoriented strain to urinate, extremely constipated, very thirsty, no strength in my arms at all, and sharp pains in them and in my arm pits…my heart feels like it beats real fast and has pressure behind it, my hands go numb, left arm tingles, My doctor ignores everything I tell him and just says that’s part of the side effects. I honestly would rather die than feel like this… I just don’t know what to do. Any suggestions????

    Comment by Kristi Hoggatt — July 11, 2013 @ 4:20 PM

    • Kristi,

      Why don’t you start by writing a daily diary of your feelings, symptoms and reactions.

      Then write up a list of questions/issues for your doctor. Most important ones first because who knows how much you’ll have.

      BE prepared!

      Secrets to Better Care from Your Doctor

      http://epilepsytalk.com/2010/06/13/secrets-to-better-care-from-your-doctor/

      And insist on an alternative. There are zillions of meds on the market and there’s no reason you shoud suffer.

      If you don’t have a good relationship with this doctor or you feel he’s not listening to you, then seek a second opinion. You’ve got nothing to lose.

      Please let me know how it works out Kristi. Best of luck to you…

      Comment by Phylis Feiner Johnson — July 12, 2013 @ 6:19 PM

  98. My lil boy is on keppra wit the vitamin pyradoxine and lamictal since starting the keppra he is not the same child e is aggressive and tuned out he is ony 5 shud I ask doctor to take him of this

    Comment by nicola — July 16, 2013 @ 4:42 PM

  99. Definitely. Try to keep a diary of his behaviors to show to the doctor, so he/she knows what’s going on.

    There are zillions of other meds on the market, and there’s no reason why your son should suffer.

    Many times Keppra is the first course of action — because it “works”. But as you can see, it doesn’t work for everyone.

    Comment by Phylis Feiner Johnson — July 16, 2013 @ 5:10 PM

  100. Found this article which I felt like had relevance to me. Unable to read it all though… Ever heard of anything like this with Keppra?

    http://www.ncbi.nlm.nih.gov/pubmed/22560189

    Comment by Doug — July 25, 2013 @ 5:17 PM

  101. PubMed is impossible to read, no less understand.

    But, it’s not just Keppra who’s the culprit.

    Stay tuned. I’ve already written an article on Sex and Epilepsy.

    I just have to edit it and do the formating.

    I’ll try to have it up and published Monday.

    Comment by Phylis Feiner Johnson — July 25, 2013 @ 5:36 PM

  102. been taking keppra like for 13 years I am taking a very high dose 1,500 & 1,500 and night……they can’t even raise it even any more. But I never and problems till abut 2 years ago when the very few times I did have a seizure a had a painic attic right after !!! But I do also have bipolar…..

    Comment by Roxanne Olmstead — August 2, 2013 @ 10:43 AM

    • Question…does taking lorazepam affect blood level of keppra (or dilantin)?

      Comment by Tom Waltz — August 3, 2013 @ 11:14 AM

  103. Roxanne, have you had your blood levels checked lately for toxity? (That was a problem I had.)

    Also, Lamical, at it’s highest dose, is both an anti-seizure drug AND an anti-depressant. (Also for bi-polar disorders, when taking a high dose.)

    Comment by Phylis Feiner Johnson — August 2, 2013 @ 11:36 AM

  104. Tom,

    Can Levetiracetam (Keppra) be taken with other medicines?

    “Sometimes one kind of medicine changes the way another kind of medicine works in the body. Taking levetiracetam does not seem to cause this kind of problem. In addition, it does not affect the level of other medicines in the body, and other medicines do not clearly affect levels of levetiracetam.”

    http://epilepsy.med.nyu.edu/treatment/medications/levetiracetam

    Phenytoin — Dilantin

    After looking at exhausted lists, it seems to indicate that Dilantin does NOT interfere with any drugs you are taking.

    http://www.healthcentral.com/druglibrary/408/dilantin-side_effects_drug_interactions.html

    The same goes for Lorazepam (Ativan).

    http://mental-health.emedtv.com/lorazepam/drug-interactions-with-lorazepam.html

    As for blood levels: Common side effects which often go away are:

    Lorazepam — hypotension, decreased respiratory drive, and cardiac arrhythmias, the risk increases with
    increasingly higher levels of the medication in the blood.

    http://som.unm.edu/coc/docs/Wilcox_Antiseizure_Med_Rec_Jan10.pdf

    Levetiracetam — In studies, levetiracetam caused minor changes in blood counts, especially changes in red blood cells and a certain type of white blood cells called neutrophils. This is not expected to cause problems in most people, unless you already have a problem with anemia or other blood disorders.

    http://nervous-aystem.emedtv.com/levetiracetam/precautions-and-warnings-with-levetiracetam.html

    Phenytoin can temporarily lower the number of white blood cells in your blood, increasing the chance of getting an infection. It can also lower the number of platelets, which are necessary for proper blood clotting.

    http://www.mayoclinic.com/health/drug-information/DR602939/DSECTION=precautions-

    Comment by Phylis Feiner Johnson — August 3, 2013 @ 4:04 PM

  105. I have recently started the generic medication of keppra and boy has it done me wrong I’m a ragging phyco! It has caused me so much deppresion and rage and anxiety I can’t even explain! I hate it

    Comment by alisha — August 10, 2013 @ 11:03 PM

  106. Dear Alisha,

    Either dump the meds or dump the doc.

    All docs seem to be resorting to Keppra (generic or not) as the first line of treatment.

    (Personally I woud be loathe to take either.)

    There are 67 other AEDs out there. Why does it have to be Keppra?

    When was the last time you saw your doc?

    Make an appoinment NOW.

    In the meantime, keep a diary of dosage times, effects, and your behavior, etc.

    This, at least, will give him/her an idea of what you’re going through.

    If, after this, a switch is not recommended, demand it. If not after that, seek a second opinon.

    As a last resort, this link might help…

    It’s a compilation by website forum members who have had positive personal experiences with docs over the years.

    2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

    http://epilepsytalk.com/2013/01/02/2013-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

    Good luck. And stand your ground!

    Comment by Phylis Feiner Johnson — August 10, 2013 @ 11:46 PM

  107. My stepdaughter is ten and is currently on Keppra xr. She apparently missed a few doses when she was out of town and her Mother said the Neuro told her to give an additional increased dosage at a total of 1000 mg in one shot. My question is everything I have read says not to do this, should my husband think about another Neuro? She told us this weekend that they are going to do a Cscan in Jan and if everything checks out she will be off her meds, so i guess it just seems a little much if she may be off of them in Jan. She has complex partial epilepsy

    Comment by Kalli — August 14, 2013 @ 10:46 PM

  108. First of all, has anybody thought of doing blood work to check the drug levels in her bloodstream?

    Take it from what one who knows. When I was on Dilantin 100 years ago, they never thought of that, and I ended up in a coma from toxic levels of the drug.

    I’m not sure about her quitting her drugs (but then again, I’m not a doc), but a second opinion might be a good thing. Because it seems like the advice her neuro is giving is inconsistent.

    I would seek a second opinion and be sure to bring her charts, records, history with you.

    (Or else you’ll be starting from scratch, or shooting in the dark.)

    Here’s a compilation by website forum members who have had positive personal experiences with docs over the years.

    2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

    http://epilepsytalk.com/2013/01/02/2013-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

    I hope this helps in some way.

    Let me know…

    Comment by Phylis Feiner Johnson — August 14, 2013 @ 11:46 PM

    • Thank you so much will do :)

      Comment by Kalli — August 23, 2013 @ 5:17 PM

  109. After learning that it was the meds including the Keppra that caused the anger ,depression, erritability and other side effects I learned to walk away from issues instead of going off on people. I’m currently in the process of stopping Keppra and we all notice a difference for the better.

    Comment by Tony Murray — August 21, 2013 @ 12:39 AM

    • How are you getting off of it? Are they decreasing your dosage a little at a time? My doctor is scheduling an MRI for me and wants to start taking me off of it as well… The side effects are over whelming and I wouldn’t recommend this medication to anyone…. Just curious what steps your going through to get off of it so I know what to expect..

      Comment by Kristi — August 21, 2013 @ 9:49 AM

    • There also must be some kind of relief in knowing that YOU’RE not “damaged,” Tony. And that the situation CAN be controlled or changed.

      Comment by Phylis Feiner Johnson — August 21, 2013 @ 9:53 AM

  110. I took keppra about 7yrs ago and I certainly would not agree with this medication what so ever, the side affects are unbearable and yes it does give you suicide thoughts, I have taken grand mal seizures, I was always a strong person and fighter, but at the age of nearly 50yrs I am getting really tired, knowing that no one can really help the seizures.

    Comment by angela — August 21, 2013 @ 5:12 PM

    • I have to agree I wouldn’t recommend this med to anyone either.. I had them change mine and its time release now. I take it before bedtime and I’ll admit its a lot better now, but still not a big fan!!!!

      Comment by Kristi — August 21, 2013 @ 6:03 PM

  111. Angela, Have you explored other options with your neuro?

    This article may give you some “food for thought”

    From AEDs to Surgery and Beyond…Some Options Explained

    http://epilepsytalk.com/2013/05/12/from-aeds-to-surgery-and-beyondsome-options-explained/

    Comment by Phylis Feiner Johnson — August 21, 2013 @ 6:07 PM

  112. I took Keppra for a few months and had no seizures or any physical side effects during this time. I did have a number of mental side effects though. I was irritable, extremely tired for days after a day’s physical activity, easily confused and very forgetful. I also experienced rages where I lost all control and if my son hadn’t been so quick on his feet in getting out of the way I could of done serious harm to him.
    My understanding is that there are a sizable minority of people who get these systems but they are usually quickly detected before any harm is done but the majority benefit from this drug. The medical fraternity need to be much more aware of these side effects and keep a close eye on there patients for the first few months after they first prescribe Keppra and any other of these powerful anti-epilepsy drugs.

    Comment by D Congreve — August 22, 2013 @ 12:51 PM

  113. I couldn’t agree more. But often, the misery occurs unexpectedly, because the warnings, dangers, consequences, etc. have not been disclosed or explained to the patient in full.

    I know, the pills come from the pharmacy with a raft of warning info. About 3 pages long. But honestly, how many people read them?

    Keppra DOES seem to be the first line of treatment these days.

    When I was at a conference in NYC, I asked one of the most famous epileptologists in the world (whom I adore, admire and respect), “Why is everyone in such a hurry to prescribe Keppra?”

    His reply: “Because it works.”

    So there you have it. Take your choice: No seizures and consequences? Or seizures and status-quo?

    Everyone’s chemistry is different and so is their tolerance.

    Many have said they’d rather have the seizures than Keppra. That’s both sad and bad.

    Comment by Phylis Feiner Johnson — August 22, 2013 @ 2:31 PM

  114. I have had seizures all my life. Been lucky enough to have been able to raise two beatiful girls. Not lucky enough to escape all the different pills, different side effects, mood swings, behavioral disorders. You name it, i’ve done it. It is now 25 years later, my girls are 24 and 26. I need to know if it is possible for a type of medicine to cause my girls to be sterile. Neither of them can get pregnant, and i feel its my fault.

    Comment by Sandy Pitman — August 23, 2013 @ 1:36 PM

    • I’ve researched for an hour and nowhere does it say that a mother’s AED use affects her childrens’ fertility.

      There are physical malformaties possible, cognitive impairment and other difficulties, but nobody talks about impairment of fertility in either the mother or the children.

      Here’s what the Mayo Clinic had to say and it really does NOT pertain to your situation:

      “Any medication you take during pregnancy can affect your baby.

      Birth defects — including cleft palate, neural tube defects, skeletal abnormalities, and congenital heart and urinary tract defects — are the primary concern with seizure medications.

      In addition, taking certain seizure medications, such as those that contain valproate, or more than one seizure medication during pregnancy can increase the risk that your baby will have impaired cognitive development.

      Valproate products include valproate sodium (Depacon), divalproex sodium (Depakote, Depakote ER) and valproic acid (Depakene, Stavzor).

      Other problems caused by seizure medications might include minor birth defects that affect the baby’s appearance, such as wide-set eyes or a short upper lip — though it isn’t clear whether this is related to the drugs or the disease.”

      http://www.mayoclinic.com/health/pregnancy/PR00123

      Stop beating yourself up.

      Comment by Phylis Feiner Johnson — August 23, 2013 @ 3:29 PM

  115. Mechanism of seizure exacerbation by Keppra has been poorly studied.

    Comment by Hisanori Hasegawa, M.D. — August 27, 2013 @ 12:40 PM

  116. I have been on keppra since 2000 I gave birth to a son in 2005. I was also on a zonegran, lovenox, and lopressor my son was diagnosed with mild retardation and adhd just recently. I am feeling so many different emotions from guilt to anger, and plenty more.What do I do from here? Can the makers of keppra be held accountable or other drug makers? I am so confused!

    Comment by Jodi — August 28, 2013 @ 9:13 PM

    • Jodi, the person(s) at fault here are your neuro and / or your GYN.

      According to the Epilepsy Foundation, mothers taking seizure medication, risk birth defects of 4 to 8 percent — compared with 2 to 3 percent for all babies.

      Not much of a difference.

      But the risk seems to be highest when multiple seizure medications are taken.

      Yet, without medication, uncontrolled seizures may deprive the baby of oxygen.

      So, it’s important, as you know, to get the right balance.

      There are no anti-seizure drugs that are 100 per cent without risk of causing birth defects.

      But some anti-seizure medications appear to be more dangerous than others and your doctor may be able to avoid prescribing them.
      Here’s what doctors know so far:

      * Depakote and Depakene seem to carry the highest risk of damage to the baby, particularly neural tube defects, such as spina bifida.

      * Phenobarbital or Depakote during pregnancy may affect future intelligence of the child, but this can occur with other AEDs as well.

      * Dilantin (Phenytoin) and barbiturates can cause cleft lip or palate, or other skull, face, or heart malformations.

      * Depakote (Valproic Acid) and, to a smaller extent Tegretol (Carbamazepine and Carbatrol), are linked to open spine problems.

      * Tegretol can also cause “minor defects,” such as fingernail malformations, or mild facial feature distortions, that often resolve by age five years.

      * Lamictal can also cause breakthrough seizures during pregnancy. That’s because metabolism of Lamictal – as well as other antiepileptic drugs — increases during pregnancy. This can cause a drop in the level of anti-seizure medication in your system. If that level gets too low, you could have a seizure. But if your doctor prescribes a higher dose of Lamictal to make sure that you don’t have breakthrough seizures, there could be a higher risk of damage to your baby.

      So it’s a delicate balance.

      The best rule is to use the single medicine that is most effective in treating your seizures, but with some bias toward the newer FDA category C antiepileptic drugs such as: Neurontin, Topamax, Zonegran, Trileptal, Lyrica, Vimpat and Keppra.

      Sigh. If you were on a cocktail of different meds, that’s not your fault. It’s the doctor’s ignorance or poor judgement.

      So, please don’t beat yourself up about it. And try to find a child developmental specialist.

      Your pediatrician will probably to able to help guide you.

      Comment by Phylis Feiner Johnson — August 29, 2013 @ 4:32 PM

  117. I have been on keppra for a week now. . Im very irritated and angry tired restless and uncoordinated. . But in the last two nights I have had very disturbing dreams of suicide. .I don’t know if I want to do what the neurologist wants me to do as I’m on 750 mg right now and he wants me to be on 1500 mgs by next week.I have de ja vu moments dont know what day it is dont know where I am most the time .I was on Dilatin and it wasnt absorbing correctly..I’m just tired of all the side effects. . Please help.

    Comment by Angel — August 29, 2013 @ 10:50 AM

    • Angel, I don’t mean to be negative or disrespectful, but if you’re feeeling this way after one week…it is NOT good news.

      Call your neuro immediately and tell him/her about your reactions and how you’re feeling.

      Demand (not “ask”) for a change of meds or else dump the doc.

      There are too many anti-epilepsy drugs out there and too many good docs for you to suffer like this.

      This link may help. It’s a compilation by website forum members who have had positive personal experiences with docs over the years.

      2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

      http://epilepsytalk.com/2013/01/02/2013-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

      I sincerely hope this helps.

      Comment by Phylis Feiner Johnson — August 29, 2013 @ 4:55 PM

    • I’m not Phyllis but that does not sound at all good! Deja vu events are actually a form of seizure according to my neurologist. I would call yours asap.

      Comment by Jeanne Adams — August 29, 2013 @ 4:57 PM

  118. I tried speaking with the jerk yesterday but he refused to listen out speak with me. . Im not happy with his manner and he knows this. . And he is the only nuero here in my county that accepts my workman comp since the seizures are caused by a mix of chemicals I use at work the chemicals have fried my brain. . The only thing that was told to me was that he didnt want me off the keppra because he feared for my life. . Well as do I with what all is goin on. I keep fighting with myself since I still have dialarin left to go back to it but I fear a seizure since they happen in the early morning while I was on dialatin and it caused ovarien cysts that at the age of 28 I’m goin to have to have a hysterectomy. . Which im not to happy about goin under a knife ..I appreciate u and the knowledge you have given me can we please continue to talk email me @ vallie_vallie@Yahoo. Com

    Comment by Angel — August 31, 2013 @ 10:27 PM

    • On Aug, 26, 2013: 17,926 people reported to have side effects when taking Keppra. Among them, 32 people (0.18%) had Ovarian Cysts.

      http://www.ehealthme.com/ds/keppra/ovarian+cysts

      After an hour of research, I could find nothing that indicated that Dilantin causes ovarian cysts.

      And this is information you probably already know…

      According to a study published in the esteemed medical journal Neurology, younger women who are taking the popular anti-seizure medication Dilantin are eight times more likely to develop significant bone loss, including osteoporosis, compared to other pre-menopausal women who do not take Dilantin, or the generic phenytoin.

      According to one doctor involved in the study, the effects of Dilantin on bone health were surprising.

      He also noted that the rate at which Dilantin causes bone loss is significant and that more patients and doctors should be aware of this serious possible risk.

      The study found that women taking Dilantin experienced a loss of 2.6 percent of their bone mineral density in one year, with the greatest loss occurring to the femoral neck of the hip bone.

      http://www.dilantinlawsuit.com/2010/01/25/dilantin-osteoporosis/

      Hysterectomy

      In most other cases, a hysterectomy is an elective procedure.

      The operation is done to improve the quality of life: to relieve pain, heavy bleeding or other chronic conditions and discomfort.

      There may be other ways of treating or dealing with these problems.

      Together with your doctor you should weigh all the alternatives and effects of the different choices to help you decide what is right for you.

      Ask Your Doctor

      •Why do I need to have a hysterectomy?
      •What organ or organs will be removed and why?
      •Will my ovaries be left in place? If not, why?
      •Will my cervix be removed? If so, why?
      •Are there alternatives for me besides a hysterectomy?
      •What are the advantages, risks, benefits of each?
      •What will be the physical effects of a hysterectomy?
      •Are these permanent?
      •What will happen to my figure, my weight, my breasts?
      •How will it affect my sex life?
      •Will I experience menopause (change of life)? Can the symptoms of menopause be treated? What are the risks and benefits of such treatment?
      •Will the operation be a vaginal or abdominal hysterectomy? And why?
      •What can I expect in the hospital? pre-operative procedures? length of stay? anesthesia? infection? transfusion? urinary catheter?
      •What kind of care will I need after my hysterectomy?
      •How should I prepare for coming home from the hospital?
      •How soon can I go back to work? Try heavy housework?
      •When can I resume sexual activity?

      http://www.health.ny.gov/community/adults/women/hysterectomy/

      I hope this has been helpful…

      Comment by Phylis Feiner Johnson — September 1, 2013 @ 2:53 PM

      • the gyno that i went to said that it was a big factor in the cysts because of the other chemicals that i work with (such as ND 66 strong plumbers acid that is bad enough that it ate threw a pair of my jeans while i was trying to clean out a building line..i work maintenance at a apartment complex and have to be licensed to use some of the chemicals so i take precautions but the night that it ate threw my pants i just didnt take enough) so im not blaming it all on the dialatin but its a possibility is of the mixture is what my gyno is saying.. she really doesnt want to do the surgery because of my age and she has decided that its a last ditch effort to keep me from being in pain… she has done all she can and there are only two things that were different when the cysts started the medication and the chemical..we have gone over all of the questions above i cover everything for fear of ending up like my mother.. they will remove everything.. i know all the side effects that could happen i’m just tired of being in pain and the keppra has also mind me ultra sensitive im in more pain now then i was when i took the dialatin.. im probably rambling and i apologize for that this is just much easier to talk about face to face then it is with me typing and listening to my three year old act a fool and run around.. at this moment though he and my husband are the ones that are keeping me from goin completely crazy.. they are my world :)

        Comment by angel — September 1, 2013 @ 8:02 PM

  119. Just saw this article on Keppra and testosterone for men.

    http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2010.02732.x/pdf

    Long and short of it is it says testosterone and free testosterone INCREASE in men on Keppra.

    This is the opposite of what has been going on with me, so now I’m even more confused whether Keppra is the problem or if this is some leftover effect of Dilantin.. or if I should switch back to Dilantin or not?!?

    Comment by Doug — September 1, 2013 @ 12:54 AM

  120. Angel, your problem sounds two pronged.

    First of all, your job definitely seems hazardous to your health in a MAJOR way. Can you find another? ( I know, easier said than done.)

    As for your meds, why can’t you find some other therapy?

    Keppra and Dilantin are not the only meds in the world.

    And there is no reason you should suffer so.

    But, I feel strongly that your job is a major cotributor to your problems.

    Comment by Phylis Feiner Johnson — September 2, 2013 @ 11:35 AM

    • I agree with Phylis…your job might be more of a contributor to your problem than you can imagine. After five years of hell at mine (and tonic clonic seizures for the first time in 25 years), I left my job for a lower paying job. I’m happier and healthier; and I’m on keppra anb dilantin. Good luck to you, you’re in my prayers.

      Comment by Tom Waltz — September 3, 2013 @ 12:46 AM

    • Angel If those meds aren’t helping you could you ask your doctor if you could try Banzel or Peganone. I know each med works different in everybody. Like others have said some meds might work for them but different in others. I know over years I had to try different ones before one did finally work for me. I hope this can help you out.

      Comment by Corina — September 3, 2013 @ 10:37 AM

  121. I can’t leave my job my home and everything I have is connected to it. . Management is trying to get me trained for office manager. . The company wants everyone to start at the bottom and workup.. which when I started I was 16 so ive been here for awhile. . But due to the workman comp I had to stop training.. They are very worried about my health and so am I.. as for the meds the drs don’t listen to me They are being paid by work comp. . Im tired of all this. . Today hahas been worse then any other day. . The pain is so intense..I feel like I’m goin to have a seizure. .I just want it to stop.

    Comment by Angel — September 2, 2013 @ 6:33 PM

  122. Well office manager would be a great improvement.

    Why don’t you talk to your boss about it?

    According to the ADA: A new position should be equal in pay and status to your original position, or as close as possible if no equivalent position is available.

    The new position does not have to be a promotion, although you should have the right to compete for promotions just like other employees.

    Title I of the ADA provides that people with disabilities cannot be excluded from employment unless they are unable to perform the essential requirements of the job.

    An employer may not discriminate in:
    Recruitment, advertising, and job application procedures…

    Hiring, upgrading, promotion, demotion, tenure, transfer, layoff, termination, return from layoff, and rehiring…

    Rates of pay or other compensation and changes in compensation…

    Job assignment, job classification, position descriptions, lines of progression, structures and seniority lists…

    Leaves of absence, sick leave, or other leave…

    Fringe benefits, whether or not administered by the employer…

    Selection and financial support for training, including apprenticeships, professional meetings, conferences and other related activities, and selection for leaves of absence to pursue training…

    Also, you can potentially get something from your doctor that says that if you are feeling ill or what have you, you can take off with no repercussions for you. Its called an intermittent leave of absence.

    http://epilepsytalk.com/2012/11/13/epilepsy-and-employment/

    Comment by Phylis Feiner Johnson — September 2, 2013 @ 7:37 PM

    • At this moment I’ve talked with everyone and they are trying. .I have a nuero app tomorrow and I will be having a nice one sided conversation with the dr. . Well as nice as I can be. When people dont listen I become a bit testy. .I really appreciate all of the advice. I just don’t want to leave the company and since the Desk job is open im gonna take it as soon as everyone releases me from this nightmare. I just know that I’m no longer capable of performing my original jobs tasks. . Is scary to think what could happen if im running a retrival machine and have a seizure I could lose a limb or worse yet be killed. . Im not taking that chance

      Comment by Angel — September 4, 2013 @ 12:54 PM

  123. Well, I could sure see why you’re testy. I wouldn’t even be that restrained!

    Here’s a little advice that might (or might not) help you on Thursday…

    Secrets to Better Care from Your Doctor

    http://epilepsytalk.com/2010/06/13/secrets-to-better-care-from-your-doctor/

    And here’s a wonder “ode” that my friend Sally wrote…

    Ode to a Doctor’s Visit…

    http://epilepsytalk.com/2012/09/04/ode-to-a-doctors-visit/

    I think you’ll appreciate the wisdom in Sally’s piece!

    Comment by Phylis Feiner Johnson — September 4, 2013 @ 7:15 PM

  124. I believe that in severe reaction cases like mine and others i have read are a case of Misdiagnoses in the types of Seizures and causes of them by Doctors that are not as experienced in Neurology than others. In my case I have Multiple Seizure disorder as well as Peripheral Neuropathy and was sent to 2 separate Neurologist.One to treat my Seizures and the other the Neuropathy. I was placed on Keppra after the Gabapentin I was prescribed caused my seizures to spike. Though I was never diagnosed with Epilepsy I was still prescribed Keppra. Both drugs vertually have the same worsened side effects so I was not only having much worse Siezures but violent reactions, severe depression and much much more side effects that have nearly ruined my health and life. Along side the Gabapentin these two drugs have made my life and that of my families a living hell. I’m off of the Gabapentin now and am weaning myself off the Keppra slowly so I don;t throw myself into more seizures as I fear they may cause irreversible brain damage or a stroke or Heart failure. ( As I already have Afib and Heart failure these drugs should have never been prescribed to me. I cannot speak for anyone else, but I do know what has happened to me. My life and world have been turned upside down as a result of this drug. And unless you are relatively healthy, actually do have Epilepsy I would not take this drug..Worst part, I had to find this information myself and in the process I found a New and more experienced Neurologist. Best of luck to everyone..

    Comment by Martha Merson — September 6, 2013 @ 2:34 AM

  125. WHY did they give you Keppra, knowing you were taking Gabapentin? (I guess you wish you knew, too.)

    Why did you have to go to two docs? Wasn’t one competent enough to understand your problem?

    It certainly doesn’t seem the right hand was talking to the left hand.

    Did they ever communicate? Did ANYONE do their homework?

    Even your pharmacist could have picked up on the drug interactions.

    I’m so sorry for all you’ve been through.

    I’m sorry that you were an unwitting victim of their ignorance.

    But I sure am happy you survived all this. (No credit to them!)

    And one suggestion: send each one of them a copy of the Merk Manual!

    Comment by Phylis Feiner Johnson — September 6, 2013 @ 9:15 AM

  126. I read this line from Mayo Clinic site about Keppra side effects: “Although not all of these side effects may occur, if they do occur they may need medical attention.”

    Do you think they just mean talk to your doctor and see what he thinks or do they mean if you have side effects listed after that sentence it is very bad and you must immediately see a doctor? Reason I ask is I had several on the list, and I’ve told my doc about it, but he doesn’t think the ones I have are all that serious. Things like, poor sleep, muscle weakness and fatigue, poor memory, lack of personality, etc.

    Comment by Doug — October 22, 2013 @ 11:46 AM

    • Well, HE might not think it’s that serious, but it’s YOUR body.

      On the other hand, many side-effects are often listed to CYA.

      The personality issue is a real deal breaker though, in my humble opinion.

      Perhaps you should seek a second opinion?

      Although in my experience, most doctors think Keppra is the berries.

      Even my “hero” Orrin Devinsky, when I confronted him about it. :-(

      Comment by Phylis Feiner Johnson — October 22, 2013 @ 1:34 PM

  127. Ive just had Keppra prescribed. I work swing shift, 2pm to 1030pm, I’m trying to decide the best times to take it, which is twice a day-500mg each dose to start progressively up to 1500 in two months. Would I feel the side effects more right after taking or in a few hours? Do the side effects stay with you once you are on the drug or do they diminish before you take your next does?

    Comment by Julie Mayer — October 22, 2013 @ 1:12 PM

  128. I’m sorry Julie, but that’s something you’ll have to ask your doc.

    Comment by Phylis Feiner Johnson — October 22, 2013 @ 1:15 PM

    • I’m not asking what the side effects are, I’m simply asking those who have used it what their experiences are so I can try and decide what times will maybe work best for me. The doctor only says to take it twice a day, like morning and night, which for me is a little different. I’m mostly just hoping to avoid being the most tired while at work. If anyone has experiences they’re willing to share, I’d appreciate the feedback. thank you.

      Comment by Julie Mayer — October 22, 2013 @ 1:23 PM

      • Julie, in my experience it makes you tired regardless. It may ease up and not be as bad a few months in, but I am generally always fatigued and weak feeling.

        I’d just take it morning and night like directed, as I don’t think the tired feeling will really wear off.

        Comment by Doug — October 22, 2013 @ 3:44 PM

      • Julia I know I have been on Keppra for awhile now like 3 years and I don’t get sleepy like you said you do. It might be that my body is used to it.I do hope you can figure it out so it doesn’t mess up your schedule.

        Comment by Corina — October 23, 2013 @ 12:52 PM

      • Julie,

        I’m in the waiting room to have my blood drawn for keppra level. I can tell it’s high because of extreme sleepyness. My doc has been working with me to reduce my doseage. I’ve been on keppra for six years.

        Comment by Tom Waltz — October 23, 2013 @ 2:13 PM

      • Thanks for the replies. This is all new to me and I appreciate hearing what experiences others have had.

        Comment by Julie Mayer — October 27, 2013 @ 2:12 AM

  129. How serious is muscle weakness and fatigue when taking keppra? I ask because if you look on any website (drugs.com, mayo, etc) it says “Check with your doctor IMMEDIATELY if you experience any of the following effects..” It then goes on to list muscle weaknees, fatigue, stiffness, and other stuff.

    I have of course mentioned this multiple times to my doc, but he never acts like this is all that serious. But to my mind, this seems to be getting slightly worse. I exercise alot and I can tell a difference.

    I’ve seen two other neuros and they act like its not big deal as well.

    Anyone have thoughts?

    Comment by Doug — October 26, 2013 @ 7:05 PM

    • It could be the effect of taking the drugs over time or just plain old aching joints!

      In other words, the redundancy of using those muscles so much could be causing fatigue, wear and tear, or flare-ups.

      Comment by Phylis Feiner Johnson — October 27, 2013 @ 11:11 AM

  130. I would try varying your exercise routine if you have not already done so. Use the same level of exertion but emphasize different body parts. If the muscle weakness moves to the new groups you know it is the workout. Good luck!

    Comment by Jeanne Adams — October 28, 2013 @ 12:51 PM

  131. GREAT idea Jeanne!

    Thank you…

    Comment by Phylis Feiner Johnson — October 28, 2013 @ 3:02 PM

    • Thanks, you were the inspiration! :-)

      Comment by Jeanne Adams — October 28, 2013 @ 7:33 PM

  132. I have been on the generic form of Keppra for roughly 5 weeks due to an increase in my seizure activity. It has reduced my seizures but yesterday I had what I thought was a seizure and my family said it was more like a catatonic episode. I could hear what they were saying but could not respond. I could feel tears running down my face and neck but could not wipe them away. I am terrified now . Help!

    Comment by Suzanne McDonald — October 30, 2013 @ 11:28 AM

  133. Suzanne, it could have been the change to the generic form of Keppra.

    Write down in detail (or have your family write it down) exactly what happened and call your neuro.

    It could be the generic change. If so, have him write a new script with the “Do not substitute box checked”.

    Prevent Medication Changes…

    http://epilepsytalk.com/2011/09/14/prevent-medication-changes/

    I hope this helps.

    Comment by Phylis Feiner Johnson — October 30, 2013 @ 1:26 PM

  134. I had a brain tumor the size of a large orange removed in january of 2011. I was weaned off keppra in january of 2011. Then in march 2012 I had a grand mal seizure while in the passenger seat of a car. I fractured my back from the car to the emergency room of the local hospital. I am now back on keppra 1500mg. I am seizure free for Over 20 months. I do not like the side effects of keppra but I am told I will be on keppra for the rest of my life. Any ideas or alternatives. Seizures are very scary. I was talking with the driver and began to stutter and then lights out.

    Comment by Rich hansen — November 11, 2013 @ 2:25 PM

  135. I should correct I was weaned off keppra January of 2012.

    Comment by Rich hansen — November 11, 2013 @ 2:30 PM

  136. I have been told that all seizures are epelipsy related?
    Has anyone out there had too much keppra in there blood stream?

    Comment by Rich hansen — November 11, 2013 @ 2:34 PM

    • Seizures can be caused by Head Injury, Stroke, Brain Tumors, Degenerative Diseases, Metabolic Disturbances…

      See: Possible Causes for Epilepsy and Seizures

      http://epilepsytalk.com/2010/02/05/possible-causes-for-epilepsy-and-seizures/

      Conditions Commonly Misdiagnosed as Epilepsy

      http://epilepsytalk.com/2010/02/17/conditions-commonly-misdiagnosed-as-epilepsy/

      You should have your blood levels checked regularly, to make sure the levels of whatever meds you’re taking are working properly in your system, also.

      Comment by Phylis Feiner Johnson — November 11, 2013 @ 2:53 PM

    • Yeah every now and then I will have to skip a dose cause I will have to much in my system and I will feel really drug up and I don’t like that feeling and when its time for my next dose I’m back to normal.

      Comment by Corina — November 12, 2013 @ 10:00 AM

      • Good for you Corina!

        You’re doing exactly the right thing, having your blood checked regularly.

        (I just did it last week!)

        Comment by Phylis Feiner Johnson — November 12, 2013 @ 10:45 AM

      • I have only had my blood checked for keppra once about 2 years ago. I have not had a seizure since the grand mal march of 2012. I have an MRI scheduled for Thursday. I have a bad cold and cough so I am wondering if I should re schedule the MRI. They take 600 slices and I cannot move or cough.

        Comment by Rich hansen — November 12, 2013 @ 11:42 AM

  137. Rich,

    Are you back on Keppra? (There certainly are a skillion alternatives and add-ons to help with the side-effects.)

    Are you having seizures now?

    What meds are you taking?

    What are the side-effects?

    Comment by Phylis Feiner Johnson — November 11, 2013 @ 2:47 PM

  138. Rich,

    I think you need to be a little more pro-active about the blood tests.

    On the other hand, I agree, perhaps you should reschedule the MRI. (Mine is Thursday!)

    Why don’t you call and see what your neuro or his PA thinks.

    It’s too serious a test to decide for yourself…

    In either case, good luck!

    Comment by Phylis Feiner Johnson — November 12, 2013 @ 6:40 PM

    • Phylis, docs will tell you that keppra is a drug that doesnt get blood levels checked. My doc never checks keppra blood levels in me.

      Comment by Doug — November 19, 2013 @ 5:08 AM

  139. Mayo Clinic and NYU both say you only need to have your blood levels checked if you are pregnant or your dose suddenly changes. (That’s sort of obvious for any med.)

    YAY! One less stick of the needle. THANK YOU DOUG!

    Comment by Phylis Feiner Johnson — November 19, 2013 @ 8:25 AM

    • Also a note to Rich: Not only does what Doug said is true, but the MRI was a breeze. I just had one yesterday.

      Where did you get the 600 “slices” from? Did mean “slides”? Maybe you should consider an “open” MRI?

      Comment by Phylis Feiner Johnson — November 19, 2013 @ 8:31 AM

  140. Hi, I only had two grand-mal seizures so far (thank god), one in January (that ended up in hospital and a traumatic brain injury caused by a fall) and one in March. After the last one, the Doctors said it’s epilepsy and I started taking a generic of Keppra. Many months my daily dose was 2x 750mg. I haven’t had any seizures and besides some smaller concentration problems and fatigue it was okay. In October my doctor said I needed to take 2x 1000mg because of my blood results. Two weeks after I started taking the higher dose end of October), I suffered (and still do) from dizziness 24/7 (especially when I turn my head) and caused by that sometimes loss of balance, concentration problems (my boss tries to understand but it’s really hard), I’m always tired and exhausted, I barely hear my alarm clock in the morning, I barely have any appetite (hunger became the most annoying thing to me)… I talked to my neurologist especially about the dizziness and gave me a prescription for physiotherapy because “maybe it’s my upper spine”. She didn’t really said anything about my other problems and I was too baffled to fight more…She said I should call her after I did physiotherapy (10 hours I guess) and if it didn’t get better. Well, I guess that’s what I need to do know, I guess….? This is all very new to me and..I’m so tired because of course it’s not my nape. I feel like no one takes me seriously, not my doctor or people at work or my boss. I’m glad that I’m in therapie for two years now (started because of a depression) so at least I’m not all alone with the stress right now. I don’t really have friends at my side or family living nearby and that starts to suck.
    Sorry for the messy post, it’s hard to find any German site about Keppra and I’m so glad right now I found this site.

    Comment by Lisa — December 19, 2013 @ 6:34 AM

  141. Hi Lisa,

    Some ideas:

    Instead of having your Keppra doubled, can you just titrate down to 1.5 of what you were taking?

    Try to keep a daily seizure diary for each day: how you’re sleeping, any events of the day (good or bad), how you feel before a seizure (auras? triggers?) when you have seizures and, if you can, the duration of the seizures.

    That way he’ll have of clearer idea of what you’re going through.

    I had a serious falling problem. And lots of concussions as a result.

    I took physical therapy for about a year and it worked great for balance. (I can even go up and down the stairs, without falling!)

    As for therapy and depression, I’ve been seeing a psychiatrist for years.

    I take Effexor which has been great. No side-effects, no felling “dumbed” down, no confusion, no sleepless nights.

    It’s made a world of difference for me.

    Here’s a link that might help with your doctor’s visits:

    Secrets to Better Care from Your Doctor

    http://epilepsytalk.com/2010/06/13/secrets-to-better-care-from-your-doctor/

    I hope this helps…

    Comment by Phylis Feiner Johnson — December 19, 2013 @ 10:00 AM

  142. I have a friend with a 7 year old on Keppra oral 4 ml twice a day and is he is still having seizures. She takes the child to the emergency room but no follow up is ever done. She is very confused and when she called the clinic where his regular doctor is for an appointment they said they were very busy and gave her an appointment 4 months from now. The weekly seizures continue. .The child is not seen regularly . How often should a child be seen at his doctors office to discuss on going treatment and shouldn’t they be will to see him right away when he lands up in an emergency room because he is feeling weak, dizzy and had 4 seizures that afternoon?. .

    Comment by Mary Eichler — December 21, 2013 @ 1:51 AM

  143. Mary, I would say “yes” and “yes”.

    If the doctor isn’t even responsive to numerous ER visits and doesn’t have the interest or the time, it’s time to move on.

    Here’s a link that may help. It’s a compilation by website forum members who have had positive personal experiences with docs over the years.

    2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

    http://epilepsytalk.com/2013/01/02/2013-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

    Also, this link may help also:

    Secrets to Better Care from Your Doctor

    http://epilepsytalk.com/2010/06/13/secrets-to-better-care-from-your-doctor/

    In addition, it might be helpful to start a daily seizure diary, noting sleep patterns, what he eats, activities (good or bad) during the day (auras? triggers?), the times of seizures and duration.

    The new doc might have a better idea of what’s going on.

    Also, be sure to bring all of records with you, so the neuro has a clear picture of previous events, tests, treatments, etc.

    I hope this helps your friend…

    Comment by Phylis Feiner Johnson — December 21, 2013 @ 10:25 AM

  144. I enjoy reading through an article that will make people think.
    Also, many thanks for permitting me to comment!

    Comment by casino — December 30, 2013 @ 5:49 AM

  145. Hi,
    my son (4years old) is on Keppra from last 4month and last month we went for EEG and doc said reports are great. after 2weeks again doc ask us to go for another Blood test and after that we got call from doc saying that keppra level is low so they want to increase the dose. i dont understand what does it mean if EEG report say things are better than doc is suppose to reduce the dose that what i know. but in this case she want to increase the dose . can anybody explain me what it means?
    thanks in advance

    Comment by kavya — December 30, 2013 @ 10:51 PM

    • Blood tests are far more reliable in measuring blood levels of the med in the system.

      In fact, the same thing happened to me.

      My EEG was normal, but after blood test results came in, I had to titrate up to almost DOUBLE the dose of my meds.

      So, you’re going in the right direction!

      Comment by Phylis Feiner Johnson — December 31, 2013 @ 3:02 PM

  146. Hello My neurologist put me on Keppra (500mg/x2 a day) . The thing is I’m not epileptic. I’ve had a seizure once when i was 6-7 and another this past November. Now 17, so ten years later i have another one. Full seizures not ones that last 1-2 minutes. Even though its been a big gap between the two seizures I got fainting spells like clock work (before keppra). Literally the color draining out of me and i melt to the ground. Now that I’m on Keppra for about 5-6 weeks now, I feel life-less, im usually the life of the party. I had depression before taking keppra and it just worsened it, i have suicidal thoughts almost everyday i’d say 4-5 times a week. Also, i feel angry 80% the time. I dont have the drive to do anything im in my bed always and I’m always always feeling cold. Do you think i should quit the medicine?? Any advice or recommendations, or even relatables?

    Comment by Deja tolbert — January 3, 2014 @ 4:16 PM

  147. Deja, isn’t that a bit radical?

    (Although, for some reason, Keppra seems to be the current drug of choice for doctors. I don’t know why.)

    There are a zillion meds out there.

    For example, I’m on Lamictal and my seizures are under control. (Of course that wouldn’t mean it would work the same for you.)

    Call your doc and tell him you can’t tolerate the Keppra. Side-effects, etc. and demand to be put on a different drug.

    In the meantime, try to keep a daily diary of sleep habits, events of the day (good or bad), your feelings, including — how you feel prior to a seizure and if you can — the number and duration of the seizures, plus how you feel afterwards.

    Meanwhile, before your visit, be PREPARED.

    Here’s a link that may help:

    Secrets to Better Care from Your Doctor

    http://epilepsytalk.com/2010/06/13/secrets-to-better-care-from-your-doctor/

    Comment by Phylis Feiner Johnson — January 3, 2014 @ 5:08 PM

  148. Just wondering if anyone could offer some info/advice;

    I’m a 27 year old and have been on 500mg of Keppra twice daily for the last 7 years and have had no grand mal seizures whilst on it. I have some myclonic jerks but they don’t cause me any problems. My experience of Keppra has been nothing but positive in controlling my epilepsy.

    I’ve been looking at doing a Very Low Calorie/Total Food Replacement Diet which puts you into ketosis in a bid to lose weight.

    I was just wondering if anyone knows if this would interfere with my epilepsy or medication? From looking online I can see that a Ketogenic diet is often used for controlling epilepsy in children so I’m thinking it would be a plus if anything? But then i have concerns around any interactions it may have with my Keppra.

    If anyone has any input it would be greatly appreciated!

    Eva

    Comment by Eva — January 3, 2014 @ 6:38 PM

    • Well Eva,

      The The Ketogenic Diet, (which is not just for kids), the Atkins Diet, the Modified Atkins Diet (M.A.D.) and the G.A.R.D (Glutamate-Aspartate Restricted Diet) are all considered seizure fighters.

      For some, they eliminate seizures.

      For others, nada.

      I find the Modified Atkins Diet the most user-friendly. Seizure control and pounds dropped.

      Before you decide to take the leap, I would query your neuro and if the answer is “yes”, and perhaps get the help of a nutritionist for dietary advice (safety) and to get started.

      I doubt any of the three can cause you harm, but then again, I’m not a doc!

      Three Anti-Seizure Diets That Could Change Your Life…

      http://epilepsytalk.com/?s=anti+seizure+diets

      Comment by Phylis Feiner Johnson — January 3, 2014 @ 7:52 PM

  149. Keppra is the best seizure medicine I’ve been on. I’ve had to take seizure medicine for 40 years, and just got used to feeling so drugged. I couldn’t believe the difference when was took off Tegretol and put on Keppra (in the hospital) ! My memory got SO MUCH better! My attitude did too. Always have had a attitude ‘what can go wrong, will’ but after being on Keppra it’s totally different. My thinking is more positive. I don’t assume the worse is going to happen like I used to. Instead consider how lucky I am, and to appreciate life. I had a BAD memory before Keppra and just assumed it had to do with the brain surgery I had 20 years ago, so it was quite pleased to find out that it was mainly the Tegretol, because my memory improved so much more after took off Tegretol. Good Luck everyone !!!

    Comment by Rhonda — January 5, 2014 @ 8:47 PM

    • Hi Rhonda I have gone through the same thing you have for the last 24 yrs. I was on lots of different meds before Keppra. My first one was Tegretol and that didn’t help and other ones didn’t help either. I’ve also have gone through a couple surgeries too over the years. plus I have a VNS in me too. I’ve been doing a whole lot better after having that 2nd surgery and I am still on keppra and I have never had any problems with it. And I also take Peganone and Banzil. I don’t know if you have heard of these or not.

      Comment by Corina — January 6, 2014 @ 12:32 PM

      • No. Haven’t heard of Peganone and Banzil. I have been on several different seizure medicines in the past 40 years. Tegretol turned against me after being took for 30 years, had to change then to Keppra. Good switch !!!!

        Comment by buddyrhonda — January 9, 2014 @ 7:43 PM

  150. Bravo Rhonda!

    It’s nice to hear something POSITIVE about Keppra!

    Comment by Phylis Feiner Johnson — January 6, 2014 @ 9:28 AM

  151. Well Buddy,

    Whether or not these new drugs are for you — it’s still nice to be informed and know they exist! :-)

    Comment by Phylis Feiner Johnson — January 9, 2014 @ 7:48 PM

  152. I have to say Keppra was TERRIBLE for me! During the first month my legs hurt so bad that I had to hold the tears in. It’s a kind of leg pain I’ve never had before or since. I don’t know how I got through the period I had the pain, but was so relieved after my body “adjusted” to the medication and it no longer hurt.

    Also, the first month or so I started having intense thoughts of suicide. I have dealt with depression in my past, but never like this!!! My thought process was not, “I want to die because….” but rather, “I want to die.” Veeery strange to have a thought like that with no other feelings/thoughts to go with it.

    Then once I “adjusted” to it, I would go back and fourth on whether it was the medication making me depressed or not, but I tell you, now that I stopped taking that RX I see a world of difference! Even close friends see a difference and I only stopped a week ago.

    Another thing it was doing was making me feel extremely apathetic towards anything I normally was excited about. I would try and be constructive and get things done, but it would come in short bursts at best. The longer I was on the medication, the more I felt like I didn’t care about anything. To the point that I got fired.

    Yes, I feel like I would like to find a career, however, the place I was employed at was my favorite job thusfar. And regardless of the fact that I felt like I needed to find a change, I have mad respect for them and would never have just not cared to go into work even though they kept calling me. I can be quite a heavy sleeper so my (multiple) alarms and the phone calls AND my roommate trying to wake me up are quite hazy, BUT not hazy enough that I wouldn’t have made it to work had I been my normal self.

    Also, I felt very angry about pretty much life in general. Not in a way that I would show it to anyone, but it just made me annoyed and frustrated at things that normally I could just brush off.

    All in all, I would be very careful if you get on this medication. It seems to work really well for some individuals, but for a lot of us it’s a nightmare. I would make sure you’re around people who love and care about you when you first start using this drug and then also anytime you end up having to up the dose. I’m lucky I didn’t end up doing anything stupid while on this med.

    Comment by Anon — January 21, 2014 @ 6:10 AM

  153. This is way old, but:

    I was put on Keppra in February 2009. It was done by an ER staffer after I moved to a new city (complex mix up, having been off meds after losing insurance, being in a hospital in a city in a state I had never lived in before, etc). I was doing so well on it at first, sleeping better than I had ever in my life, that my follow up with my new neurologist led to me staying on it.

    And then I slept more. And more. And more. I was sleeping 14-16 hours a day. And then I had seizures completely without any of my usual triggers. Turns out it can have this effect in people with JME. My doctor and I never made that connection. I’m now on Lamictal.

    In the fall of 2013, my best friend had his first seizure (he is 30, it was very out of the blue), and he was also put on Keppra right off the bat, just like me in the ER. Coming on top of several other not-great life events in the past three years, he became depressed. It wasn’t so unusual, he’d suffered depression before, and it wasn’t hard to understand giving his situation. But then it worsened. Drastically and rapidly. I live halfway around the world from him, so I couldn’t go, but I called my mom and basically put her on standby despite the fact that they don’t even really know one another. I told him he HAD to talk to his doctor about this.

    Yeah, it was the Keppra.

    I get that it works for people, but with such polarized outcomes with use … why is it the go-to? Still? Is it a money thing? Like does the company that creates it pay more than the Lamictal/Zonicimide/whatever people? I don’t get it.

    Comment by darcil — February 16, 2014 @ 9:38 PM

  154. Let’s hear it for Lamictal! I’ve been on it for 5 years and it’s done wonders for me. Seizures controlled!

    At first, the only side-effect was that it made me crazy hyper at night and I couldn’t sleep. So, we changed the PM dose to 5PM rather than bedtime and it worked like a charm.

    As for Keppra, I was at a conference at NYC and asked Orin Devinsky (my absolute hero) about Keppra.

    I asked about side-effects, kick-backs, etc.

    He said it was the go-to drug because it worked. And then I told him about my website and he said “With all due respect, your website only represents a microcosm of the population.”

    And as you can see, it DOES work for some people. Although, from the comments above, it seems to have an amazing backlash for others.

    I guess it’s just like you said. What works for some people doesn’t necessarily work for others. All of our body chemistries are different.

    But Keppra definitely would NOT be my first choice as a go-to med.

    Comment by Phylis Feiner Johnson — February 17, 2014 @ 10:08 AM

  155. My son has had 33 tonic-clonic seizures over a 5-year period. He still doesn’t have a definite diagnosis of epilepsy; seizures could all have been “provoked” by benzodiazepine dependence/withdrawal (Ativan), and/or other (misguided) attempts by various neurologists to prevent more seizures while tapering off the Ativan (which hasn’t happened yet).

    First seizure was definitely provoked by Trileptal, so that was Strike 1.
    Started on small dose of Lamictal; when increased, he developed a stiff neck and skin rash. Strike 2.
    He had 3 t-c seizures in 1 day, so was started on loading dose of Keppra in hospital. The dose (1,000 mg.) was way too high for him, so we gradually lowered it to 200 mg./day. No seizures, but life was not worth living because of Kepp-rage and SIBs. Had to stop it. Strike 3.
    Seizures resumed (2 in one day), started on Depakote Sprinkles (small dose). We had to stop this too, because of elevated ammonia in his blood. He was well on his way to Valproate-induced Hyperammonemic Encephalopathy. Strike 4.
    Back to hospital to transfer him from Depakote back to Keppra (small dose, only 125 mg./2X/day). All was OK for a week after he came home from hospital, but then the familiar Kepp-rage episodes returned. The “electric shock” sensations drive him absolutely wild. Strike 5.

    He is a tall, strapping lad, strong as a horse in everything except his CNS. He cannot tolerate any of these poisons. What to do next? We are at our wit’s end.

    Comment by Martha — March 4, 2014 @ 2:59 PM

    • I had some of the problems you describe on meds too. I had to be taken off of Depakote cause it didn’t help me and also I had gained a lot of weight from it. I still do take Keppra but I’m on a higher dose then what you said .Have you ever check to see if he or she would qualify for a VNS to see if that would help control the tonic clonic type seizures you said they have.

      Comment by Corina — March 4, 2014 @ 5:27 PM

      • Thanks for your thoughts. Son doesn’t even have a definitive diagnosis of epilepsy. All seizures may have been provoked by benzodiazepine withdrawal and/or other drugs being added to the brew and/or withdrawing from those drugs. It is long overdue for us to seek the advice of a different neurologist, and that is what we will be doing later in March.

        One thing is very clear: he is extraordinarily sensitive to drugs and other chemicals, and cannot tolerate these toxins.

        Comment by Martha — March 4, 2014 @ 6:57 PM

  156. One thing I can recommend is one of the “seizure” diets which can help keep his seizures in check.

    They’re not for everyone, but they’re certainly worth a try and many people have had success with one or the other.

    Three Anti-Seizure Diets That Could Change Your Life…

    http://epilepsytalk.com/2009/10/04/eating-well-is-the-best-revenge/

    I sincerely hope this helps, Martha.

    Comment by Phylis Feiner Johnson — March 4, 2014 @ 3:37 PM

  157. Thanks. He is 28 years old, on the autism spectrum, and enjoys a wide variety of foods. It could be very difficult to get his cooperation in this. The problem started with Ativan dependence and withdrawal (prescribed for the anxiety that preceded and accompanied migraine headaches, when none of the migraine meds helped). A patient with a primary diagnosis of autism should never have received an addictive drug in the first place.

    Comment by Martha — March 4, 2014 @ 4:26 PM

  158. Well, I’m stumped.

    Here’s a loooong shot.

    Epilepsy — Preventing Depression — Project UPLIFT

    http://epilepsytalk.com/2012/12/18/epilepsy-preventing-depression-project-uplift/

    Actually, the next one could apply to anyone…

    Fighting Seizures Nutritionally

    http://epilepsytalk.com/2009/11/26/fighting-seizures-nutritionally/

    Comment by Phylis Feiner Johnson — March 4, 2014 @ 5:04 PM

  159. Actually, this may be a looong shot:

    Epilepsy — Preventing Depression — Project UPLIFT

    http://epilepsytalk.com/2012/12/18/epilepsy-preventing-depression-project-uplift/

    And this applies to just about everyone…

    Fighting Seizures Nutritionally

    http://epilepsytalk.com/2009/11/26/fighting-seizures-nutritionally/

    Comment by Phylis Feiner Johnson — March 4, 2014 @ 5:10 PM

    • Thanks, Phyllis. I will check it all out. My son never met a vegetable he didn’t like, so he has always eaten a lot of broccoli and spinach. No shellfish, though (Selenium), because we have assumed he was allergic to it (my husband’s family is). Son loves nuts, but (wouldn’t you know?) always avoids the Brazil nuts!

      Comment by Martha — March 4, 2014 @ 6:49 PM

  160. Hey, it’s a start. And Brazil nuts aren’t the only nuts good for you. (Think: Almonds!)

    Comment by Phylis Feiner Johnson — March 4, 2014 @ 8:09 PM

  161. Phylis, do you know if Keppra leeches Depakote ER?

    Comment by Ellie — April 1, 2014 @ 11:38 AM

  162. “There were no interactions found in our database between Depakote ER and Keppra XR” according to Drugs.com

    http://www.drugs.com/drug-interactions/depakote-er-with-keppra-xr-918-483-1448-13129.html

    It seemed from reading random forum reports that the combination was effective.

    But you should be taking 500-1500mg. Calcium and 10g. Vitamin D because both vitamins can be depleted from AEDs.

    http://epilepsytalk.com/2011/06/21/brain-food-for-your-health%E2%80%A6/

    Comment by Phylis Feiner Johnson — April 1, 2014 @ 12:05 PM

  163. Wasn’t sure where to post this question, but since i take Keppra I thought I’d put it here. Phyllis, I heard recently about diagonal ear lobe creases being a possible indicator of heart disease. What do you think about this? I read conflicting stories and don’t know if it is a wives tale or legit.

    Sort of plays into some thoughts I’ve had that either my Dilantin from the past or Keppra from the present could possibly cause premature aging of a sort.

    Also, wondered if it is true about the creases, are all creases bad? Or do only diagonal creases count as worrisome. Thanks

    Comment by Doug — April 6, 2014 @ 2:19 AM

    • Wow, Doug, you never cease to amaze me. And who would have ever known?

      Yup, your hunch was right.

      “In 1973, a study published in the New England Journal of Medicine reported that a diagonal earlobe crease (ELC) was a potential indicator of coronary artery disease (CAD). This crease was later called “Frank’s sign,” after the lead author of the study, Dr. Sanders T. Frank. Whereas a “normal” earlobe is smooth, an earlobe with a crease has a fold, straight line, or wrinkle that appears to cut the earlobe in half.

      Supporting Studies

      Since Frank’s original study in 1973, several more scientists have looked at the potential connection between earlobe creases and CAD. Some studies have shown a connection, while others haven’t. In 1982, Pasternac and colleagues published a study of 340 patients. They found that the earlobe crease was a sign associated with increasing age and CAD.

      Another study in 1991 by Elliott and colleagues found similar results. So did a study by Edston in 2006, which reported that the predictive value of an ear crease was as high as 80 percent in individuals younger than 40 years.”

      http://www.healthline.com/health/heart-disease/ear-creases

      But that doesn’t play into your question about Keppra or Dilantin. Those are horses of a different nature!

      Comment by Phylis Feiner Johnson — April 6, 2014 @ 10:52 AM

      • Yeah, I’d heard about some of those studies. I’ve heard of some others that say there is no correlation other than wrinkles and heart disease are just more common when you get older. Just as eye sight worsens with age and bifocals are necessary, but there is no relationship between needing bifocals and heart disease either.

        I just wanted to get your opinion on whether you thought it was legitimate.

        As for Dilantin and Keppra, I’d heard of premature aging of the HPA axis due to AED use. And, I’ve noticed some changes since I stopped Dilantin that are generally associated with aging. So, I wondered what someone would look for to see if the AEDs had done something to cause some signs of aging or if there were tests one could look to for the same reason.

        Comment by Doug — April 6, 2014 @ 3:45 PM

  164. Doug, there’s an interesting thread on Coping with Epilepsy that deals (and argues) about premature aging of the HPTA axis. I think you’ll find it fascinating.

    http://www.coping-with-epilepsy.com/forums/f23/premature-aging-hpta-axis-18988/

    “And there aren’t any particular tests other than a general check-up for things like high blood pressure, or a bone density scan.

    “If you are basically feeling fine, then that’s the main thing.” — Nakamova, Super Moderator, Coping with Epilepsy.

    Comment by Phylis Feiner Johnson — April 6, 2014 @ 6:07 PM

    • Thanks, I’ve actually seen that article before too.

      Comment by Doug — April 13, 2014 @ 7:29 PM

  165. You are one good — and thorough — researcher.

    Comment by Phylis Feiner Johnson — April 13, 2014 @ 10:42 PM

    • too bad we can’t get paid for our research, no?

      Comment by Doug — June 5, 2014 @ 12:38 AM

  166. Just got another bone density test, and the numbers look worse. It is very frustrating, given I take vitamin supplements and exercise like crazy. I was moved to keppra and away from dilantin because it was supposedly better for bones. what are we supposed to do?

    Comment by Doug — June 5, 2014 @ 12:40 AM

  167. I can’t figure it out. The endocrinologist said you were ok, the neuro said it was the dilantin, nobody seems to be able to figure it out — even you and me.

    Have you considered an alternative medicine doc (CAM)? Although I wouldn’t be able to come up with a recommendation.

    Grrr. This is making me feel hopeless and helpless. :-(

    P.S. How do you feel on the keppra versus the dilantin?

    Comment by Phylis Feiner Johnson — June 5, 2014 @ 10:13 AM

    • I’ve considered just about anyone that can help, but finding a CAM who is willing to deal with seizure people and I feel I can trust is not always easy.

      I feel okay on the keppra, but as far as day to day feeling good and like myself, I always felt better on Dilantin. Of course, I don’t know if my not always feeling great is leftovers from dilantin or from the keppra or something else, but thats another story..

      I’ve found articles saying keppra causes bone loss too though they say not as bad as dilantin (I think I posted that on this site somewhere). So who knows what is right anymore..

      BTW, You pretty much got the endo and neuro statements correct, although I just gave them this latest bone scan result, and the endo said I could make an appointment to talk if I wanted, but he didn’t offer anything else and didn’t act concerned, like I am. (of course, they don’t like to give free info via phone or email)

      Comment by Doug — June 6, 2014 @ 12:09 AM

  168. One thing you should keep in mind is that bone strength IS hereditary.

    Fortunately for me, my birth parents had bones of steel.

    On the other hand, Arthur’s parents (and entire family) has weak bones and they’ve been more susceptible to breaks, etc.

    And I don’t think your seizure medication is going to do much to change your bone structure.

    Just keep doing the VERY healthy things you’re doing. And know that you’re doing the best for your bones.

    Comment by Phylis Feiner Johnson — June 6, 2014 @ 9:34 AM

  169. DOUG,

    Please go to Keppra — What people are Saying — Page 2 — for continued information about the hereditary role in bone structure and osteo. http://epilepsytalk.com/2014/06/06/keppra-what-people-are-saying-page-2/

    Comment by Phylis Feiner Johnson — June 6, 2014 @ 10:49 AM

  170. My son took one half initial dose of 500mg and it knocked him unsteady, fatigue., forgetfullness…he is starting a lower dose of 250 mgand I am scared to death of Keppra..

    Comment by Karen — June 6, 2014 @ 5:31 PM

  171. Karen, try to keep a seizure diary for your son.

    Note his sleep patterns, eating habits, daily activities, emotional state(s) and behavior. Then try to note the time and duration of his seizures.

    This will give both you and his doc further insights.

    Comment by Phylis Feiner Johnson — June 6, 2014 @ 5:43 PM

  172. PEOPLE, IF YOU CAN NOT POST (WE’VE RUN OUT OF ROOM), PLEASE GO TO http://epilepsytalk.com/2014/06/10/keppra-what-people-are-saying-part-2/

    Comment by Phylis Feiner Johnson — June 6, 2014 @ 5:50 PM

  173. i dont have epilepsy i thank God but when I went to the stupid jewish doctor she gave me kepra and since that day i have been moody…in stress,,,i had my absence seizures,,dry mouth,,,fever,,,,and many other things…kepra is dangerous,,,though i lost 20 kilos,,,,anything i eat or drink i feel like vomiting…

    Comment by marool — June 25, 2014 @ 9:12 AM

    • Have you changed docs or meds or are you now epilepsy-free?

      By the way Marool, please do not say anything discriminating or inflammatory on this website.

      (I am Jewish.)

      Comment by Phylis Feiner Johnson — June 25, 2014 @ 1:06 PM


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    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I've 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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