Epilepsy Talk

Keppra — What People are Saying — Part 2 | June 10, 2014

The controversy rages on.

After 280 replies on Keppra — What People are Saying — we just plain ran out of room. http://epilepsytalk.com/2010/10/15/keppra-what-people-are-saying-2/

But the beat goes on. The conversations continue.

See please, tell us about your experiences and how YOU feel…




  1. keppra has been working pretty well for me. but can’t that it works for all patients.

    Comment by Crystal Cahill — June 10, 2014 @ 3:53 PM

  2. I guess you’re one of the lucky ones, Crystal.

    Comment by Phylis Feiner Johnson — June 10, 2014 @ 5:41 PM

  3. I began at 250 mg, but now take 2000 mg of Levetiracetam daily. It works wonders for me. I went from several a day, to a couple per week, to one occasionally every month or two. No more walker or wheelchair everyday. After the side effects wear off I’m good. I’m happy with my med!

    Comment by Vonna — June 12, 2014 @ 5:28 AM

  4. YAY Vonna! It’s good to hear someone has benefited from Keppra.

    You’re on a roll.

    Are you’re still on Keppra now, or have you been “weaned” off?

    What about the side-effects you mentioned?

    Any other meds?

    Comment by Phylis Feiner Johnson — June 12, 2014 @ 10:42 AM

  5. I take 2250 mg XR each day and have been seizure free for a year. A little bit dizzy once in a while and I can’t take the generic form. All is good at this dose. Any higher dose and things get bad. Except for the alarm that goes off once a day to remind me to take my meds and the ever-looming financial responsibility – I could almost forget I have epilepsy. But I am an extremely logical person with a totally illogical disorder so I am wise enough to know to enjoy the seizure-free moments for all could change at any time.

    Comment by Dawn — June 13, 2014 @ 4:04 PM

  6. What a wise and wonderful attitude!

    I wish I could be so smart. I can’t tell you how many times I’ve missed my meds. Especially since I take them three different times a day.

    And I’m so glad to hear your positive response. It’s an inspiration to us all.

    Comment by Phylis Feiner Johnson — June 13, 2014 @ 4:28 PM

  7. Keppra has been very effective for me. I take it along with Lamictal for years now. 15yrs for Lamictal, and around 2005 for Keppra, but was still having seizures until 2008. With a combination of the two, taking it daily as prescribed and the Lord’s healing, I have been seizure-free and the medical restriction was removed from my license.

    Comment by Keita Walker — June 16, 2014 @ 1:40 PM

  8. Hooray for you Keita! It’s great to hear your good news.

    P.S. I just got my license reinstated, last week. :-)

    Comment by Phylis Feiner Johnson — June 16, 2014 @ 3:29 PM

  9. My 16-year old daughter was prescribed Keppra (750 mg 2 times a day) for her new-onset seizures in September 2013. It gave her excellent seizure control, but she had very negative side effects that built up over 4-5 months. At first she was having intermittent anxiety issues, but she had had those in the past so we assumed it was not due to the medication. After 5 months on Keppra she was dealing with almost constant anxiety & depression and occasional panic attacks, and having trouble coping with her life. She was also extremely angry and aggressive, particularly to me. It was a nightmare and we were getting desperate. Because that is not the typical way the side effects develop, we were not sure it was the medication – until she came off of it and all of those issues disappeared. She was totally off meds for 7-8 weeks (too complicated to explain here!), but then had another seizure. She is currently doing well on Onfi, but will be transitioning to Lamictal after she gets back from an overseas trip. And we have our daughter back!

    I wanted to write this up so that people know that not all negative side effects with Keppra show up immediately. I am thrilled that it works for many people, but it was a nightmare for us. Taking her off of that drug was one of the best decisions we ever made!

    Comment by kgartner714 — June 29, 2014 @ 10:53 AM

  10. Thank you for your input and sharing your experiences.

    If it’s any comfort to you, I’ve been on Lamictal for five years, without any side-effects. Except that it made me a bit hyper, so I now take my first dose in the morning (as I always did), and then take my second dose between 5:00 and 6:00 PM.

    I only hope it works as well for daughter as has for me!

    Comment by Phylis Feiner Johnson — June 29, 2014 @ 11:41 AM

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    About the author

    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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