Epilepsy Talk

Keppra Generic Seizure Drug Contributing to More Seizures, Side Effects and Death | July 17, 2010


This news alert comes from Debbie Nicholson at allvoices.com…

“Generic medications seem to be having their share of problems today. Generics are developed to provide low-cost medications to patients and to provide the same qualities as the name brand medication would not to increase the problems of the disease/illness.

The drug Keppra which is a brand-name seizure medication was approved in 2009 and was then sold. Patients who were then switched to Levetiracetam are now experiencing on-going seizures that did not occur while they were on the drug Keppra.

Generic medications being changed from one another is not uncommon in this day and age. Someone always think they can make one which is equivalent to the brand drug or prior generic and it can be developed in such a way it will be more cost-effective for patients needing the medications.

Drug Substitutions

The University Hospital in Newark, New Jersey specifically states their opinion about AED’s (anti-epileptic drug) medications that basically substitutions of generics may be alright in certain conditions, but epileptics need to check with primary care physician before taking or receiving any generic substitutions. They also clearly state in no uncertain terms that the difference between brand medication in epilepsy and generic has a major difference. That these drugs could inhibit control of seizures in persons.

Now it is being stated that persons taking this new generic could lose driving privileges due to the fact it can onset more seizures, it will also impair them from employment or school with time lost. There have been cases indicated of injuries from the drug. It was noted that at least 59% of patients on this medication had more recurring seizures. Forty nine percent note was more severe side effects such as vomiting and weakness. On top of the usual side effects more intense ones have been documented such as psychotic episodes.

Past Studies Should Have Been An Indicator

In June 2010, the journal Epilepsia had published a study on patients and having their anti seizure medication changed over. It validating the medical groups at large of their apprehensions of generic brand medications not being able to perform as equally as to the brand name medications. Due to the recent events of this latest generic brand drug the Epilepsy Foundation is now making it one of its top priorities of exchanging brand name medications for generics due to the recent rash of side effects and developments on the latest switch.”

P.S. Here are some places where you can get name-brand Keppra at a low price:

Keppra Patient Assistance Program   http://www.patientassistance.com/profile/ucbpharma-196/

Deeply Discounted Drugs without Insurance  http://epilepsytalk.com/2010/03/18/deeply-discounted-drugs-without-insurance/

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/

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

Reference:

Debbie Nicholson
Newark, NJ; USA | Jul 16, 2010
http://www.allvoices.com/contributed-news/6322770-levetiracetam-generic-seizure-drug-contributing-to-more-seizures-side-effects-and-death

133 Comments »

  1. Keppra (Brand) vs generic Levetiracetam, initially the first week I did not notice to much of a difference. I thought great better for my pocket book! The second week I noted I was getting more seizure activity. I asked the pharmacist and they said it varies from patient to patient.

    Zonegran, I can take the generic and it does not make a difference. Tegretol I need the brand name. The doctor told me it is what you start w/ if you start w/ the brand name you stay w/ the brand name. If you start w/ the generic you stay w/ the generic.

    I feel it depends on the individual drug. Keppra and Tegretol is best w/ the brand name.

    Comment by Tonialpha — July 17, 2010 @ 11:41 PM

    • i have been on epitol ( generic tegretol) for over 30 yrs. actually was the first person in the usa to be tried on it thanks to NIH at the age of 7 , no problems. however my dialantin stopped working in my 30’s and i have had seizures in my sleep for over 7 yrs. finally my new neurologist put me on generic keppra, i had my first full night of sleep in all thoes years. i am thankful for this med and i feel great. will let you know how it goes with a higher dosage. i cant tell you the hell i feel i have been through having grand mal as a child , then being controlled till my 30’s and now im 48 and going through menopause. keppra is helping and i just might have my lifeback. much luck to all of you ……j

      Comment by jackie — March 3, 2011 @ 12:29 AM

  2. It’s not just the prescribing of generic AEDs that appears to be the problem (I’m fine on the generic of Lamictal and Klonopin) it’s the switching between two brands. Usually, the switch is from an expensive name-brand drug to a newer generic. But the culprit is not necessarily the generic!

    According to an Epilepsy Foundation report, more than 1,000 consumers surveyed, reported an increased risk of seizures and side effects when:

    1. They switched from one manufacturer’s formulation of an anti-epileptic drug to another…

    2. They switched between different manufacturers’ versions of the same generic drug…

    3. They switched from a generic to a brand-name drug…

    4. Or they switched from a brand-name drug to a generic.

    It’s all real confusing, I know. I’ve been there, too. But I think the bottom line here is consistency. If you have a medication that works for you, stick with it!

    Comment by Phylis Feiner Johnson — July 17, 2010 @ 11:58 PM

  3. I agree stick w/ one type of medication if you are used to the generic brand fine, it is when they switch the brand to the generic that is the culprit!

    Comment by Tonialpha — July 18, 2010 @ 12:21 AM

    • Agree with you 100%. Refills just increased nearly $90. With how sensitive neurological disorders can be, insurance companies should not be able to influence individuals into taking less effective or even dangerous pharmaceuticals to increase profit margins.

      Comment by Josh — March 23, 2012 @ 5:41 PM

      • Agree but with a HUGE “however. . . ” Pharmaceutical companines are also villains here. The active ingredient(s) in generic drugs are required by the FDA to be exactly the same as the brand name versions. This requirement should also cover inactive ingredients – binders, fillers, etc. – or any differences in them should be disclosed. But pharmaceutical companies lobby against such regulation so they can continue to prove that their obscenely priced brand name drugs are better and so they can get away with 60%, 70%, 100%!! price increases. It’s not about health care; it’s about profit care.

        Comment by AJ Frankenberg — May 17, 2013 @ 9:53 AM

  4. Thank you Phylis. I did not know this before. I am going to ask my neurologist about this. My seizures have increased. I am on the generic for Keppra.

    Comment by Ruth Brown — July 18, 2010 @ 9:16 AM

  5. I have been using Levetiracetam, generic for keppra from the beginning of my treatment. I am fine with it and did not face any major side effects. As mentioned by phylis may be the side effects are more when switching from one manufacturer to another.

    I get usually get Levetiracetam online at International Drug Mart. I am fine with the medication.

    Comment by Jack — October 15, 2010 @ 5:09 PM

  6. As long as you’re consistent, you’re fine…and I’m glad to hear it’s working for you!

    Comment by Phylis Feiner Johnson — October 15, 2010 @ 8:39 PM

  7. I have to say that none of these terrible side effects have attacked me since I changed to the generic Keppra. I have had bad results from other generics in the past though. I informed my doctor and tests were done. These showed that it was not the active ingredients in the generic causing the problem, but the different filler that had been used. Different companies may use different fillers so you almost have to use a ‘ hit and miss ‘ trial with them to find which ones will work properly and which ones won’t. I don’t think the manufacturers are lowering quality, but each person may have a different reaction to each type of medication. This can show that it is nobody’s fault, it’s something that is happening because of nature and no one has control of that.

    Comment by Steve — November 5, 2010 @ 1:11 PM

  8. You have a real good point, Steve. It’s the fillers that are often the “killers”!

    That’s where your pharmacist comes in…

    He’s got a bird’s eye view of patients with similar conditions, using the same med as you.

    Pharmacists see who improves and who complains about side effects.

    Plus, they can be helpful in discussing potential adverse effects of meds, the relative risks and benefits of generic versus brand-name drugs and potential interactions.

    I’ve been on generic Lamictal for years and had no problems. But I know lots of others who’ve had a pretty tough time.

    So, I think it’s as you say Steve: the fillers plus personal chemistry.

    Comment by Phylis Feiner Johnson — November 5, 2010 @ 9:00 PM

  9. My 46 year old son has been on the generic (Keppra) Levetiracetam for a little over a year. He’s also been experiencing some transient activity lately. He was on 500mg AM and 500 mg PM. He also was ordered to try an extra 500 mg PM recently. Finally on Nov. 15, 2010 at 7:30 AM, he was driving his car to work and on a busy highway had a seizure during which his car shot across the median strip, striking a truck HEAD ON and was killed instantly. Anyone out there with similar increased seizure type activity – be aware. Please don’t ignore this. We have lost a wonderful young man. This drug can be a deadly substitute for Keppra. This is not the end and we will be checking out any class actions and/or initiating our own.

    Comment by Janice Robinson — November 26, 2010 @ 10:52 AM

  10. Oh Janice, how HORRIBLE! Please accept our condolences.

    Yes, it is quite true you are not alone with Keppra problems. But yours is the first fatality I have heard of.

    There is an eforum friend I have met on “Talk About It! named Tiffany Web http://talkaboutitorg.ning.com/profile/TiffanyDruryWebb who is involved in some sort of Keppra lawsuit.

    I’m not sure of the nature, but you might want to contact her as a first step.

    There are pages and pages on Google of Keppra lawyers. Not surprisingly, most of them are dealing with the difference between Keppra and Levetiracetam… But I wouldn’t even consider hitching up with a lawyer or team until I had some actual inside information.

    I’m sorry if this advice comes at a harsh time while you are grieving, but please know we are here to help and support you in any way you can.

    Again, my heartfelt condolences.

    Comment by Phylis Feiner Johnson — November 26, 2010 @ 10:13 PM

    • Phyllis, Thank you so much for the response. Its so hard for my family to move forward with the legal aspects when the horrific ordeal of our loss is so recent. It did not have to happen and I wouldn’t want it to happen to anyone else. I will try to keep a connection with the message boards and will also check out Tiffany’s web site. Thank you for your good wishes and I hope this case has opened up the eyes of everyone who reads about my son, Erik. It may save some lives in the future. As for lawyers, I am skeptical, so when we get to that step – it will be someone whose reputation I know well.
      Thank you for your advice.

      Comment by Janice Robinson — November 27, 2010 @ 12:35 AM

      • Lawyers give me the jitters.

        Maybe, when you’re feeling more healed, you can write out Eric’s story and email it to me. I can then edit it and post it on the website. With a title something like: A Senseless Death”

        Writing can be cathartic. (I’m not just saying that because I’m a writer!) When you’re ready. As you say, it can be a lesson to many and help countless others.

        Hang in there…

        Comment by Phylis Feiner Johnson — November 27, 2010 @ 2:02 AM

      • Janice,

        This email comes from Tiffany:

        “Phylis,
        I am not involved in a Keppra lawsuit, but I will send her some links when she contacts me. I gave those links to someone on our Sacred Disease page on Facebook, which is where you misunderstood my involvement. I have not taken keppra, but I have heard of people having trouble with the medicine and try to provide any resource I find online for them. Sorry for the confusion!”

        Comment by Phylis Feiner Johnson — November 27, 2010 @ 10:47 PM

  11. Hello I’m new to this but last year I received my GED with high scores in 9-09 ! I had a grand mal seizure first time in 12-09 I’ve been on 3 different meds for it now I can barely read or write !

    Comment by Eleanor brown — December 6, 2010 @ 9:14 PM

  12. Elenor,

    WELCOME!

    Starting a daily seizure diary could be useful: noting your sleep patterns, what you eat and when, daily activities (both physical and emotional), how you feel before a seizure (triggers? auras?), after a seizure and the duration of the seizure. That may help give the doc a better idea about what’s going on with you.

    A second opinion is another good idea. Take a look at NEW Comprehensive list of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

    http://epilepsytalk.com/2010/12/03/new-comprehensive-list-of-good-neurologists%e2%80%a6epileptologists%e2%80%a6neurosurgeons%e2%80%a6and-pediatric-doctors/

    There are so many AEDs out there these days, it’s often a crap shoot to find the right combo. I kissed a lot of frogs before I found my magical med mix. (Lamictal and Klonopin.)

    Also, it takes awhile for the meds to permeate your system. How long have you been on them?

    And please, be kind to yourself. Take it one day at a time and don’t stress yourself out over it. (Easier said than done!)

    After I almost died, it took me 3 months just to find the keyboard!

    Keep writing with any questions or troubles you have. We’re here to help you in any way we can.

    Comment by Phylis Feiner Johnson — December 7, 2010 @ 12:24 AM

  13. I started having seizures in August and was placed on Depakote with absolutely no improvement. When I was hospitalized a second time in November I was put on Keppra (brand name) in the hospital. It worked very well. I still had seizures while sleeping until I added a second dose at night. Two weeks ago I got a refill of my medication and I know for a fact it is the generic form of Keppra discussed here. I have had a number of severe seizures in the last two weeks, including a fall which resulted in a concussion. I did not think it could be my AED because I had such dramatic improvement the day I was put on keppra. Now I’m seriously questioning the safety and reliability of this medication. Glad I found this.

    Comment by Janessa — December 16, 2010 @ 2:54 AM

  14. Janessa,

    I think if your doc signs the box for no substitutions, you’ll get the name brand.

    And, as extra insurance, you can bring this letter from the EFA:

    Dear Pharmacist:

    Thank you for providing me with the valuable service of filling my needed prescriptions.

    The purpose of this letter is to let you know that I have epilepsy and it is vital that I receive the same medication from the same manufacturer monthly in order to maintain the expected level of seizure control and side effects.

    Please ensure that no changes are made to my medications, including a change in manufacturer, without prior consent from my physician and myself.

    Please note this request in my file. To assist you, I have listed below the name, manufacturer and dosage of the medications I am currently taking.

    To download and print the entire form, click on: http://www.nomoreseizures.org/pdfs/pharma_letter.pdf

    Comment by Phylis Feiner Johnson — December 16, 2010 @ 8:30 AM

  15. I have not been officially diagnosed with epilepsy; however, I started have “spells”about 8 months ago, only at my work. It started with a funny feeling in my stomach and then like a cloud came over me…no loss of feeling or consciousness and lasted only a minute or so. Often, I had to use the ladies room following. In October I was so dizzy I could barely walk and my oldest daughter took me to the doctor who #1 took all necessary blood tests, #2 recommended me see a neurologist and get an EEG and MRI, #3 made me stay off work for the next 5 days (He also felt stress was part of what I was feeling as I had been working 60 hr weeks for months). The EEG was normal, the MRI showed a scar on my left temporal lobe……the neurologist couldn’t understand why I had no idea how I got injured as I had had no accidents, been hit in the head or any of the normal causes of this type of brain trauma. He did say it could have happened when I was a child by falling out of a tree, off my bike, etc. He then asked me to have an MRA of the neck and head and both were normal. Now $5,000 later as my insurance paid little on all of these tests, I have been put on generic Keppra and having the WORST side effects and have basically told my primary to either find me a doctor to really help me or I was quitting my meds. I won’t do that, but my meds are completely taking my life away. I can no longer play tennis (have played for 30 years), can’t workout, have daily dizziness, daily headache…..just really uncomfortable all the time. My primary now of the opinion that the neurologist just blew me off and is working on getting me into Emory, the Cleveland Clinic or possibly Mayo.

    I cannot take meds of any type without reaction and was really concerned with possible side effects from the generic Keppra and was told that because of the low dosage, I should have NO problems. HA!

    I had a “spell” this past Monday in our big snow/ice storm…..lasted 10 minutes and fortunately was with family who witness everything (they had had no idea of what was happening before October). My youngest is a rec therapist specializes with Special Olympic athletes and handles seizures frequently, so she was on top of helping me through.

    Does this sound like what you all go through? I am in denial that I have epilepsy but can’t be given any good reason why spells are happening all of a sudden from this scar – like it’s been there forever and has decided to raise it’s ugly head for no reason. I get answers like the brain is not black and white and there are no answers to a lot of questions concerning the brain.

    Do you think an epileptologist would be a good choice for me even though I haven’t officially been diagnosed with epilepsy?

    Thanks for any comments.

    Comment by Betty — January 16, 2011 @ 9:20 AM

  16. Oh Betty,

    First of all, you’re in complete denial. You wouldn’t be described Keppra if you didn’t have epilepsy.

    Secondly, Keppra IS a nasty drug and there’s no reason why you should suffer.

    Sounds like your primary doc is the only one with a brain in his head. All 3 university hospitals are very highly rated.

    Mayo Clinic was ranked #2 for neurology in the U.S. World & News Report’s impartial annual survey.

    Cleveland Clinic was ranked #6.

    And Emory University Hospital was ranked #12…

    http://epilepsytalk.com/2010/02/23/best-neurology-neurosurgery-hospitals-in-the-u-s/

    And if you’re looking for a NEW Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors — compiled by eforum members who have had positive personal experiences with docs over the years, click on: http://epilepsytalk.com/2010/12/03/new-comprehensive-list-of-good-neurologists%e2%80%a6epileptologists%e2%80%a6neurosurgeons%e2%80%a6and-pediatric-doctors/

    Clearly, you need a second opinion and more definitive testing.

    Video EEG Monitoring may be the ticket. It allows prolonged simultaneous recording of the patient’s behavior and the EEG. Seeing EEG and video data at the same time, permits precise correlation between seizure activity in the brain and the patient’s behavior during seizures.

    Video-EEG can be vital in the diagnosis of epilepsy and epileptic seizures. It allows the doctor to determine: whether events with unusual features are epileptic seizures…the type of epileptic seizure… and…the region of the brain from which the seizures arise.

    I know that’s a lot of information to process. But, take one step at a time and let me know how you are doing.

    There IS an answer. And it’s NOT Keppra. Good luck.

    Comment by Phylis Feiner Johnson — January 18, 2011 @ 11:18 PM

  17. Betty, I hope you feel better. You might be allergic to Keppra. I have no problem with it. It has pretty much stopped my seizures.

    Can you lower your work hours down to 40 or 50 hours a week? Sixty hours is way too much work. It will cause stress and that can increase your seizures.

    Comment by ruth brown — January 26, 2011 @ 7:46 AM

    • Hi Ruth,
      I’m glad that the generic keppra is working for you. My dr.also has me on generic keppra, and if you don’t mind me asking… What is your daily dosage & mg tablets?
      Good luck with everything! :)

      Comment by Kelly — May 10, 2013 @ 9:57 PM

  18. WOW! I am on generic Keppra and I am not feeling so hot…this is the first time I have been on generic Keppra as usually I always had name brand. I am so exhausted all of the time and developed a blister rash I never had before..I am wondering if this is because it is generic now? great post..

    Comment by Samone — February 7, 2011 @ 7:12 PM

  19. It’s nasty stuff. The best way to keep safe and not sorry is to ask your PHARMACIST for advice.

    Pharmacists get a soldier’s view of patients with similar conditions, using different medications every day. They see who improves and who complains about side effects.

    Plus, pharmacists can be helpful in discussing the potential adverse effects of medications, their costs, the relative risks and benefits of generic versus brand-name medications and potential interactions.

    They get “a soldier’s view” of patients with similar conditions, using different medications every day. They see who improves and who complains about side effects. Plus, pharmacists can be helpful in discussing the potential adverse effects of medications, their costs, the relative risks and benefits of generic versus brand-name medications and potential interactions.

    See “Pharmacists Rule!” http://epilepsytalk.com/2010/08/06/pharmacists-rule/

    Comment by Phylis Feiner Johnson — February 7, 2011 @ 11:07 PM

  20. In research we had protocol, on how a patient is to try new medication that is not on the market yet. It was to listen, observe, take blood tests, watch, do EEG’s, review their past record via their Doctor’s reports.

    When we start a new medication either generic or brand name. The doctor starts off slowly like we did in research. If the patient has a reaction you contact the doctor immediately. Some of us that have taken medication for a long time try to not call. Sometimes a new patients is unaware of symptoms of a severe rash, breathing problems, stomach irritations, and other symptoms that may or may not be serious.

    If the patient is taking more than one medication, all must be discussed. There are twists and turns but if it is written down and handed to the doctor and pharmacist. Mistakes are less likely to occur.

    Comment by Toni Robison — February 7, 2011 @ 11:41 PM

    • As usual, wise words from Toni. I wish they did all that today, rather than handing out Keppra like candy! :-(

      Comment by Phylis Feiner Johnson — February 8, 2011 @ 12:24 AM

      • Time has changed but humans haven’t. That is why I enjoyed research. We need more people in research.

        In every aspect from volunteering, going to school and getting a degree in the medical field from, Dr., Ph.D., Nursing, Research, Technician, every aspect of the field needs a mind that is open and willing to help others thereby unknowingly helping yourself. I certainly enjoyed the challenges. You are never to old!!!!

        Comment by Toni Robison — February 8, 2011 @ 1:38 AM

  21. When I was put on generic Keppra, I felt it the first day, called my doctor and he said I needed to let my body adjust. That was back in early December. After having a whopping seizure in early January, my primary took me off and put me on Dilantin which is not any better as I had toxicity to it the first day. I am still on Dilantin but at 2/3 the original dose……still have side effects but am tolerating them until I see a new neuro at Emory in two weeks.

    I have NOT been diagnosed with epilepsy but am taking anti-convulsants for possible non-epileptic seizures……so putting a bunch of chemicals in my body at age 63 is not something I am cherishing at the moment. Only hoping the neuro at Emory can find the answer and cure to my problem and get me off this crap.

    Comment by Betty — February 8, 2011 @ 3:59 AM

  22. If he is saying you have possible non-epileptic seizures, what is he basing his information on?

    Many people do not react to tests unless they are having a seizure at the time of the particular test.

    And I know, as one who was on Dilantin for ages (in those days, your choices were either Dilantin or Pheno and I chose “the lesser of two evils”), Dilantin can make you a walking, talking zombie.

    I hope that didn’t happen to you, but Emory is a good choice. It is rated #12 for neurology in the US Word & News Report’s annual survey of the best hospitals in the US.

    Good luck and let us know how everything turns out…

    Comment by Phylis Feiner Johnson — February 8, 2011 @ 3:49 PM

  23. I can for sure tell that Keppra and its generic have the tendency to increase seizures in some people. It happened to my daughter. The seizures increased albeit very slowly form 2 to 3 a month to about 3 to four a day.She went on additional medications and the situation got worse. However after about a year and and half when she was taken off keppra we could see dramatic improvement.

    Comment by Sekha — March 13, 2011 @ 10:02 AM

    • Made the same experience. My son was put on generic Keppra on top of his Oxcarbazepine (Trileptal Generic), after reaching the so-called therapeutic dose, he had more seizures then ever. (meaning like 4 to 5 times more, was like not treating him at all). Doc didn’t believe it was the drug (yeah, that’s why I get more than ever right?) and kept on increasing the dose and adding more medications to it. (Vimpat and Zonisamide) Granted, the situation did improve a little bit with extra medication, but now I am wondering, if the other drugs just hindered Keppra from doing its worst. We also took him off and I can for sure tell right now, that Keppra didn’t do a thing for him, if it was our problem, we will find out, but so far, so good.

      Comment by Diana — April 3, 2011 @ 11:40 PM

      • Diana, in my humble opinion, it was the Keppra. I was talking to a friend last night who kept on getting continuous seizures.

        Her dopey doctor kept upping the prescription until finally she protested and was switched to another med. She’s now doing fine.

        You might be interested in reading “Keppra – What People Are Saying…” http://epilepsytalk.com/?s=Keppra+-+what+people+are+saying

        Comment by Phylis Feiner Johnson — April 4, 2011 @ 2:53 PM

      • Phylis, I did read that article before I posted my comment, been reading about Keppra for months. For some it works, for others it doesn’t do anything and for a very small pool of patients it seems to make matters worse. What I don’t get is why neurologists keep on upping the dose when a patient says he has more seizures on Keppra. It is not unusual that one medication alone doesn’t do it for partial seizures; before Keppra Nick had about 4 small seizures a month, with Keppra I was back to 25 a month, we added Vimpat, later Zonisamide, of course the frequency went down to about 6 – 8, but now I had them in never before seen clusters. (e.g. 7 in 4 days). He is off the Keppra now, which didn’t make matters any worse, didn’t see a seizure for 17 days, he had a small one this morning, but much, MUCH milder than his usual and a heck of a lot shorter too and a few symptoms missing again. And here is another big bummer for us, we are military, we are send from one neurologist to the next one, none of them gets the stupid idea to do a long term EEG or a follow up MRI, they just add meds and tell me what’s written in the books, we don’t even know what kind of seizures we are treating, all we know is that it is a complex partial seizure.
        I too found a patient yesterday who now has in addition to his day seizures, night seizures, one month after starting Keppra.

        Comment by Diana — April 5, 2011 @ 11:56 AM

      • I have an update: My sons situation improved WITHOUT the Generic Keppra (seizure frequency basically slashed in half and much milder) and since a general neurologist is not the right specialist for my son, I introduced him to Neurology UNC. They seemed to also believe that the Keppra triggered the additional seizures. What gets me is this, did I not say that TWO YEARS ago, so why is some Neurologist out there getting the stupid idea he can up it a few more times, making matters only worse? I now officially switched over to UNC, I feel much better over there. Well and the rest, in my sons case it’s (I knew that all along) probably TLE which is pretty resistant in many cases, so we are trying out best to find the location of the seizure origin and you know what that could possibly mean.

        Comment by Diana — June 1, 2011 @ 11:30 PM

  24. I am really freaking out! My doc called in a script to my pharmacy today for brand name Keppra. I have been taking the brand name for two years now. I take 1250 mg twice a day. It has worked great and the only med that has stopped my seizures.

    Today the pharmacy told my doc that my insurance company would no longer cover my brand name Keppra and I would need to switch to the generic. Yikes! I have heard really terrible things about the generic and I work full time and am a worship leader on the side; I work with the public a lot. I need something that works. Is there anything I can do to prevent going on the generic? I am considering just paying it out of pocket, but that is over $500 a month, and something that I cannot afford.

    Comment by Rachel — March 18, 2011 @ 11:34 PM

  25. There’s an EFA form that you can download from “No More Seizures.” (Address is below…)

    I think if your doc signs the box for no substitutions, you’ll get the name brand.

    And, as extra insurance, you can bring this letter from the EFA:

    “Dear Pharmacist:

    Thank you for providing me with the valuable service of filling my needed prescriptions.

    The purpose of this letter is to let you know that I have epilepsy and it is vital that I receive the same medication from the same manufacturer monthly in order to maintain the expected level of seizure control and side effects.

    Please ensure that no changes are made to my medications, including a change in manufacturer, without prior consent from my physician and myself.

    Please note this request in my file. To assist you, I have listed below the name, manufacturer and dosage of the medications I am currently taking.”

    For you to download and print the entire form, click on: http://www.nomoreseizures.org/pdfs/pharma_letter.pdf

    If that doesn’t work, go to FREE Prescription Drugs

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

    Good luck and let us know how you do…

    Comment by Phylis Feiner Johnson — March 19, 2011 @ 3:30 PM

  26. I have been researching everywhere on the internet for the type of side effects my son is having from the Keppra generic. Well, we think that’s the cause since nothing else makes sense. My 12 year old boy starting having seizures last summer and the drugs that were prescribed have had limited success. Because of that, Levetiracetam was prescribed 6 weeks ago in a low dosage in addition to Topamax.

    Over the last 6 weeks, my son has become more and more surly to the point that we were going to call the neurologist to see about taking him off of it. Before we could do that, our son started saying some really weird things, which is totally unlike him. Many of the comments he was making were about things he was seeing in his head, like knives stabbing him or other violent acts. He then started talking about events that has happened to him and sexual thoughts that he felt the need to verbalize. It was all innocent things, but he had and has no control over what he was saying or thinking. When an especially weird vision was told to us, we immediately took him off of the Levetiracetam. That was a week ago. Since that time, he has been admitted to the Children’s hospital, although they can’t explain it.

    He is back home, but continues to have these thoughts and a need to verbalize them. It is almost like that Jim Carrey movie, Liar Liar where he can’t tell a lie. Instead of not being able to tell a lie when asked a question, or son can’t lie about whatever is in his head. He is unable to concentrate at school, so he has missed a week. It doesn’t seem to be getting any better and we are at our wits end. It’s all very weird but based on the side effects I have read about, it seems Levetiracetam is a likely cause. We just hope it ends soon.

    Does anyone know or have you heard of such a thing?

    Comment by Dave Wilson — May 23, 2011 @ 8:25 PM

    • Dave, has anyone considered checking his blood levels. Or taking him OFF of Levetiracetam?

      Unfortunately, some of the classic side effects include rage.

      From Drugs.com: “Call your doctor at once if you have any new or worsening symptoms such as: mood or behavior changes, depression, anxiety, or if you feel agitated, hostile, restless, hyperactive (mentally or physically), or have thoughts about suicide or hurting yourself.”

      http://www.drugs.com/mtm/levetiracetam.html

      Also take a look the article: “Keppra – What People Are Saying…”

      http://epilepsytalk.com/2010/10/15/keppra-%e2%80%93-what-people-are-saying%e2%80%a6-2/http://epilepsytalk.com/2010/10/15/keppra-%e2%80%93-what-people-are-saying%e2%80%a6-2/

      Comment by Phylis Feiner Johnson — May 23, 2011 @ 10:59 PM

    • You are having a challenge.

      It is a split one that a doctor is the best one to answer.

      I was on the generic first and the medication was sugar water for my system and I had seizures contiually. My memory went bad and still is but the doctor says your doing well! HMMM! Concentration and recall is bad and I have 3 x 5 cards for help to remember things….Your son is growing. How is gait, headaches? Exercise daily helped.

      They put me on the XR of the Keppra and I did better. That helped…there is no generic, it’s expensive. Now I’m 12 a day. I question it but they say it’s a good drug. Ask the Neurologist…..

      Comment by Toni Robison — May 23, 2011 @ 11:14 PM

  27. Hi Diane,

    That’s fabulous news. And UNC is a terrific place.

    Here’s even better news. My friend Sally Komar is President of the Brain Injury Group and she has now been asked to start an EPILEPSY SUPPORT GROUP at UNC.

    She’s a fabulous person (used to be a psychotherapist before her brain tumor)and she’s brilliant also.

    You might want to call UNC to find out when the Epilepsy Support Group is starting and sign up now.

    Glad you gave me the update so I could tell you about Sally and the new Epilepsy Support Group.

    Isn’t it wonderful when we can help one another? :-)

    Comment by Phylis Feiner Johnson — June 2, 2011 @ 2:15 PM

    • haha world is small huh? Well, I am quite a way away from UNC, live further down south, about 2 hours. Great they have a support group though, I may need it. (my son is not the only one, my hubby is also brain damaged, but has no seizures, but the threat to have one is always there). Anyways, we are going to our MRI appointment today, Nick will get his long overdue long term EEG this month as well, and then we see what we can do. Docs didn’t seem hopeless at all, I guess I finally arrived at the right place. (took long enough). Thanks so much for all you do!

      Comment by Diana — June 2, 2011 @ 2:56 PM

  28. ok so the generic keppra isnt doing its job, now they are trying me on limectal. this is not working with tegretol and keppra. but im only on the 50mg so far a day. having break through seizures and it sucks. will it be better on a higher dose????

    Comment by jackie — June 8, 2011 @ 3:08 PM

    • I don’t know if the AED cocktail will work. But personally, I’m on Lamictal (and Klonopin) and it works like a dream for me.

      They need to titrate you slowly (to avoid Stevens-Johnson Syndrome), but, my guess is that they’ll eventually take you up to 250 mg.

      Plus, you have to give it time to get into your system.

      Try to be patient and let us know how you do…

      Comment by Phylis Feiner Johnson — June 8, 2011 @ 3:23 PM

  29. Jackie, please keep in mind that not all patients with seizures can be treated with medication, for some with focal onset seizures, it just plain old doesn’t work, no matter what you give them. My son is one of those. His seizures are a lot less with medication, but still there, the new MRI revealed that there might be an abnormality, it’s tiny, but there, we are investigating further, I will not shy away from a surgery, it that increases his chances to be seizure free. Hang in there, check your options and best of luck.

    Comment by Diana — June 8, 2011 @ 6:40 PM

    • Ask Charlie (one of our family members) about his brain surgery. He had it at NYU in NYC and he is now seizure free…and a dedicated advocate.

      Comment by Phylis Feiner Johnson — June 8, 2011 @ 7:58 PM

      • Phylis, thanks! As of now, I am not even thinking about that possibility, I push it as far away as somehow possible, not because I am afraid of it, no, just to not get my hopes up. I am sick of roller coaster.

        Comment by Diana — June 8, 2011 @ 9:23 PM

    • i have gone to the 100mg a day now, on titration. no seizures during the day, but at night still have some. i have a small abnormality on the left frontal lobe, which is where the seizures seem to origonated from. they last maybe 15 seconds, but enough to mess up your world as we know it, so to speak. does lamictal come in non -extended release form. maybe if it does, my doc could try it at night dose, the keppra does not help me at all , i dont think.

      Comment by jackie — June 11, 2011 @ 2:30 PM

      • Yes, Jackie. Lamictal comes in immediate release and extended release forms, but it seems from my research that Lamitcal XR (extended release) seems to be the RX of choice for prescribing these days. (New and improved???)

        At its lowest level, Lamictal is used for anti-depression. At its next level, it’s an anti-depression AND anti-seizure med. And at its highest level, it’s for those who are bipolar.

        I take Lamictal XR and from my experience, when I took it at night, it made me crazy hyper. So, I now take both tablets in the AM.

        But another option for you could be Klonopin, which is an anti-anxiety, anti-seizure drug that seems to take the edge off and is taken at night.

        I can only tell you what works for me…but I hope this helps.

        Comment by Phylis Feiner Johnson — June 11, 2011 @ 3:27 PM

  30. Have you considered a Vagus Nerve Stimulator?

    Charlie did NOT have success with the first generation, but I’ve heard of people who have had (and not had) considerable success since then.

    Comment by Phylis Feiner Johnson — June 9, 2011 @ 3:26 PM

  31. I did not get the VNS because it was new and I thought that is too risky. I still do.

    Ruth

    Comment by ruth brown — June 11, 2011 @ 2:34 AM

  32. Ruth,

    It depends on the individual. Play it safe on the VNS. I have had for 10 years. I have had problems w/ it but it hs helped too. I could of lived w/ out it too. It is 50 /50. Some people have had tremendous help w/ it! I have not gone into status where I needed to be anesthesthesia

    Comment by Toni Robison — June 11, 2011 @ 3:09 PM

  33. Well, I have some news about my child. So we did the 72 hour EEG (for the first time EVER) and caught a seizure…only that the EEG with seizure was normal. Doc said, it’s not a seizure. For right now we are logging every detail again and will probably do the EEG again. It’s just weird that I had the exact same thing happening when he was diagnosed for the first time, a perfectly normal EEG while having a “seizre”.

    Comment by Diana — June 25, 2011 @ 6:51 PM

  34. I don’t get it…unless we’re talking about a Physiologic Non-Epileptic Seizure (NES).

    A physiologic seizure is a temporary loss of control that is often accompanied by convulsions, unconsciousness, or both. Most common are seizures, which are caused by a sudden abnormal electrical discharge in the brain.

    Sometimes, and for lots of different reasons, one or another of these electrical discharges may grow and spread abnormally to other parts of the brain, which in turn generates their own abnormal discharges. This has a cascading effect, and within a few seconds, the entire cerebral cortex can be discharging at once.

    The resulting seizures most often imitate complex partial or tonic-clonic (grand mal) seizures. Full loss of consciousness, stiffening and jerking of all four limbs, plus a period of confusion often accompany the event.

    Examples of medical causes of physiologic seizures include hypoglycemia, hypoatremia, cardiac arrhythmia, brain lesions, syncopal episodes, migraines and transient ischemic attacks. The National Institutes of Neurological Disorders and Stroke adds that narcolepsy and Tourette syndrome are other possible causes of physiologic seizures. Differentiating physiologic seizures and epileptic seizures can be difficult, so medical assessment and careful monitoring is needed.

    Keeping a daily seizure diary can be helpful, noting how you feel before a seizure (triggers?), during a seizure (symptoms?), and after a seizure, including the duration of the event. This can help both you and your doctor better understand what is going on with your body.

    http://epilepsytalk.com/2010/12/27/is-it-really-epilepsy/

    So, all I can say (since I’m not a doc) is keep up that diary… :-(

    Comment by Phylis Feiner Johnson — June 25, 2011 @ 7:31 PM

  35. I don’t get it either, when Nick was first diagnosed they said he has absolutely no seizure activity and even with seizure on the EEG there was nothing to see, but they said that could be an error or sampling and left the diagnosis clinical (going off what I told them) and we tried Trileptal, seemed to work. Now about 9 years have passed, Nicks episodes are not as bad as they used to be, but they are still there, so we finally catch a seizure on the EEG again and I get the exact same result? No seizure activity during an episode. He doesn’t do any jerking every, he basically stares a bit, makes this horribly humming type of noise and that’s about it. I was stunned that we are again puzzled.

    Comment by Diana — June 25, 2011 @ 8:54 PM

  36. Well Diana, you know there are 40 different kinds of epilepsy (including absence seizures where you just tune out for a few seconds) so maybe what they see ain’t what you got. (????)

    Have you considered a 2nd opinion?

    Comment by Phylis Feiner Johnson — June 25, 2011 @ 10:36 PM

  37. UNC is my last stop with my son, we had countless neurologists, but Nicks episodes being of the generalized type was never considered, they are not grand mals and they are most certainly not absence or atypical absence seizures, leaving us with focal onset seizures and obviously that’s not it either, there is no seizure activity basically with or without attack. I guess just to rule out an error of sampling, we will do that EEG again. (well, and I bet we get the same result, this is the second time I get nothing with attack on eeg).

    Comment by Diana — June 25, 2011 @ 10:45 PM

  38. Well, all I can say is the UNC is an outstanding choice for neurology.

    I have a friend who had brain surgery for an extreme spider-like tumor at NY Presbyterian. She then spent ONE year in rehab at Kessler Institute.

    And, one of her reasons for moving to Charlotte was because of its accessibility to UNC.

    In fact, UNC is going to be starting an Epilepsy support-resource group. They’re working on it now and Sally Komar (my friend in Charlotte) will be spear-heading it.

    Comment by Phylis Feiner Johnson — June 26, 2011 @ 3:44 PM

  39. Hello Phylis and Everyone,

    Trust all is well. I am currently taking Keppra and Trileptal (brand names) for my complex partial seizures and was recently hallucinating when placed on the max dose of trileptal.
    I am also very tired and confused. I am hoping these are not signs and symptoms of a tumor.

    Thanks

    Comment by Omor — July 13, 2011 @ 8:59 PM

  40. Hello Phylis and Everyone,

    Trust all is well. I am currently taking Keppra and Trileptal (brand names) for my complex partial seizures and was recently hallucinating when placed on the max dose of trileptal.
    I am also very tired and confused. I am hoping these are not signs and symptoms of a tumor.

    Thanks
    Thanks again Phylis!

    Comment by Omor — July 13, 2011 @ 10:49 PM

  41. and in the end, it is Dr. Greenwood at UNC who finds out that my child obviously doesn’t have (yes you read right) Epilepsy. My son obviously a psychiatric problem due to temporal lobe dysplasia and his episodes are non epileptic, they are a sudden change in behavior, which brings us back to the Keppra problem, try to treat “Pseudo Seizures” with Keppra and it will get worse, it is not a psychiatric drug and therefore has that adverse effect. Well, I am now going to see if I get an appointment with the psychiatrist at UNC and if not, I will find one. My son needs biofeedback therapy and totally different drugs, but he is treatable. (yay)

    Comment by Diana K — August 19, 2011 @ 5:24 PM

  42. UNC is ranked #2 in the annual rankings of U.S. News & World Report.

    http://health.usnews.com/best-hospitals/university-of-north-carolina-hospitals-6360260

    However, I see nothing about psychiatry there. The U.S. World and News Reports top-ranked hospitals for psychiatry are pretty far away.

    http://health.usnews.com/best-hospitals/rankings/psychiatry

    Interestingly, an article called The State’s Best Doctors: these are the specialists that physicians say they’d go to if they needed to see a doctor. They list the following for your area as thus:

    NEUROLOGY

    T. Erik Borresen, Mecklenburg Neurological Associates, Charlotte

    Michael H. Bowman, Raleigh Neurology Associates, Raleigh

    J. Thaddeus Coin, Wilmington Health Associates, Wilmington

    David H. Cook, Cary

    Andrea L. Diedrich, Carolinas Medical Center, Charlotte

    Peter D. Donofrio, Wake Forest University School of Medicine, Winston-Salem

    William G. Ferrell, Raleigh Neurology Associates, Raleigh

    Ronald L. Follmer, Carolinas Medical Center, Charlotte

    S. Mitchell Freedman, Raleigh Neurology Associates, Raleigh

    Larry B. Goldstein, Duke University Medical Center, Durham

    David C. Good, Wake Forest University School of Medicine, Winston-Salem

    Colin D. Hall, UNC School of Medicine, Chapel Hill

    James F. Howard Jr., UNC School of Medicine, Chapel Hill

    Keith L. Hull, Raleigh Neurology Associates, Raleigh

    Michael D. Kaufman, Multiple Sclerosis Center, Charlotte

    Daniel T. Laskowitz, Duke University Medical Center, Durham

    David S. Lefkowitz, Wake Forest University School of Medicine, Winston-Salem

    James M. Love, Guilford Neurological Associates, Greensboro

    Richard W. Marcus, Neurology Associates, Hickory

    E. Wayne Massey, Duke University Medical Center, Durham

    Janice M. Massey, Duke University Medical Center, Durham

    Frederick E. Pfeiffer, Mecklenburg Neurological Associates, Charlotte

    James E. Pugh Jr., Mecklenburg Neurological Associates, Charlotte

    Steven F. Putman, Carolina Neurological Clinic, Charlotte

    Rodney A. Radtke, Duke University Medical Center, Durham

    Jeffrey Rosenfeld, Carolinas Medical Center, Charlotte

    Donald B. Sanders, Duke University Medical Center, Durham

    Mark Allen Stacy, Duke University School of Medicine, Durham

    Charles H. Tegeler IV, Wake Forest University School of Medicine, Winston-Salem

    B. Todd Troost, Wake Forest University School of Medicine, Winston-Salem

    However, this publication is from 2004.

    Source: http://www.allbusiness.com/north-america/united-states-north-carolina/174377-1.html#ixzz1Vfh0EXc6

    There is an article here called “Retrain Your Brain – with Biofeedback”

    http://epilepsytalk.com/2011/06/25/retrain-your-brain-%e2%80%93-with-biofeedback/

    And, if nothing else, you may find the references helpful.

    Good luck!

    Comment by Phylis Feiner Johnson — August 21, 2011 @ 2:32 PM

  43. I have been taking non-generic Keppra ever since it was released and have had absolutely NO problem. I was recently prescribed Generic Keppra and have nothing good to say about it. First of all it made me sick as a dog, made my urine so strong I was burning, bluring my vision, stomach upset, in addition I was having a seizure a day for 4 straight days. This was not so with the Brand Name Keppra. I contacted my doctor and she made me a new prescription for brand name Keppra which I acquired and the burning has stopped, the dizziness and nervousness has disappeared. We need to make sure brand name Keppra stays and the insurance companies continue to pay for them

    Comment by Rose Webster — October 1, 2011 @ 8:24 PM

    • It probably would be useful for you to know about this letter and make a copy of it for your files. It was 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.

      Dear Pharmacist:

      Thank you for providing me with the valuable service of filling my needed prescriptions. The purpose of this letter is to let you know that I have epilepsy and it is vital that I receive the same medication from the same manufacturer monthly in order to maintain the expected level of seizure control and side effects. Please ensure that no changes are made to my medications, including a change in manufacturer, without prior consent from my physician and myself. Please note this request in my file. To assist you, I have listed below the name, manufacturer, and dosage of the medications I am currently taking.

      Thank you very much,

      Your Signature______________________________

      Today’s Date______________________

      Your Printed Name_________________________________

      Phone Number____________________

      Physician’s Name_________________________________

      Phone Number____________________

      Brand Name_________________________________

      Generic Name_________________________________

      Manufacturer ______________________________________

      Dosage _________________________________

      I hope this helps…

      Comment by Phylis Feiner Johnson — October 1, 2011 @ 8:58 PM

  44. I currently on Lamictal and Keppra and my seizures are pretty much nonexistant now, which I contribute to the Keppra. I had been on so many that I can’t even remember all the names I hadn’t had a seizure in 2 years until a few days ago they talked like it was a baaaad one. Which was a big slap in the face I just got my license back last year and was actually beginning to feel normal, I wasn’t having as much of the “you shouldn’t do that, you might have a seizure crap.” I’m pretty low at the moment but overall Keppra has improved my life immensly.

    Comment by Wendy Kincaide — November 6, 2011 @ 3:03 PM

    • Oh yeah it is the generic Keppra too

      Comment by Wendy Kincaide — November 6, 2011 @ 3:05 PM

    • It could have been a break-through seizure. But it might be good to keep a Daily Seizure Diary if it happens again.

      Write down your sleep patterns, what you eat and when, your daily activities (including emotional upsets), how you feel before the seizure (triggers? auras?), during the seizure and the duration.

      Maybe this will give you a better idea why it happened.

      The other suggestion is to have your blood levels checked, to see if there’s enough of the drug in your system.

      Comment by Phylis Feiner Johnson — November 6, 2011 @ 6:22 PM

  45. Hello everyone. I recently found this website, thanks to the Official Epilepsy Foundation of America. I found this topic incredibly helpful. My husband has had epilepsy since adolescence. He suffered a fall at work last fall and hurt his head. A few months later, he was experiencing petit mal seizures, which I had never seen him have. HIs neurologist prescribed generic keppra for petit mal activity and the activity ceased. About a month into taking the meds, he began experiencing grand mal seizures, 1 every month and a half, which was uncommon. I believed the lamictal he was already on, was losing it’s effectiveness. His neurologist kept upping the dose for keppra generic. I never believed it was the generic causing the problem until I read this thread. He has been seeing an epileptologist for a few months, and he has been weaning him off the keppra generic. I thank God and his new doctor everyday… my husband has been seizure free for over two months. He was prescribed zonasamide, which I believe is helping to keep the seizures at bay. Thank you so much for the useful information. I check here daily for new articles. Thanks again and God bless.

    Comment by alma silva — December 1, 2011 @ 10:16 PM

  46. My daughter was just diagnosed and started on Keppra (brand name). We are on month three and insurance will not cover the brand name now. Not a peep from them for months one and two, now this. I guess we will have to try the generic and see what happens. She has been seizure free since starting Keppra, but I have noticed some rage, violent thoughts, etc. Should we switch her immediately anyway if these side effects are occurring? We have been managing it, but do they generally get worse or better if we stay the course?

    Comment by Steve Santo — January 10, 2012 @ 6:30 PM

    • Has she started the angry behavior after switching to the generic? I’m no doctor, but I doubt they will get better. (Sorry.)

      Here are some places where you can get prescription drug assistance…

      Keppra Patient Assistance Program

      http://www.patientassistance.com/profile/ucbpharma-196/

      Access 2 Wellness – designed to assist people with limited or no health insurance get the help they need to lead healthier lives. People can learn about a variety of assistance programs that, combined, offer more than 1,000 prescription medicines and medical products for free or at a discount to qualified individuals. http://www.access2wellness.com/a2w/index.html

      Epilepsy Foundation Medication Coverage – 25 prescription med links, plus links for generics and Veteran’s benefits. http://www.efwp.org/programs/pap_list.shtml

      Free Medicine Program — established by volunteers, the Free Medicine Program helps patients substantially reduce or completely eliminate their prescription drug costs. http://www.freemedicineprogram.org/

      Needymeds — a list of programs that assists people who cannot afford medicine or healthcare costs. This information is available anonymously and free of charge. http://www.needymeds.org/

      Partnership for Prescription Assistance — helps qualifying patients without prescription drug coverage get the medicines they need through the program that is right for them. Many will get their medications free or nearly free. http://www.pparx.org/

      Patient Assistance Program – a free resource created by Volunteers in Health Care, is a ntional, nonprofit resource center designed to help connect patients who cannot afford their prescription medications with patient assistance programs. http://www.rxassist.org

      Pharmaceutical Company Patient Assistance Programs — many pharmaceutical companies offer Patient Assistance Programs to those who cannot afford the cost of their medications but are ineligible for Medicaid due to their income. Click here for a list of each company’s contact information: http://www.efwp.org/programs/pap_list.shtml

      Pharmahelper – is a comparison search engine for prescription medicine and detailed drug knowledge. It helps you save money and buy prescription drugs safely online. You can also research drugs, compare pharmacy prices, even find drug savings based upon your particular condition. http://www.pharmahelper.com/

      Premier Recovery Resources – (also known as RxCut), offers free access to savings up to 75% off prescriptions and up to 50% off the typical price of laboratory tests and imaging services. http://www.prrxcut.com

      Prescription Hope — over 1,500 brand name medications are offered as prescribed by your doctor. $15 per prescription per month service fee. There is a yearly enrollment fee of only $15, no other medication cost and no hidden costs. http://www.prescriptionhope­.­com/­what-­we-­offer.­html

      RxSavingsPlus — a free drug/prescription discount card, to help lower the price for medication. It can be used at CVS Pharmacy, Target, Rite Aid and 60,000 participating pharmacies nationwide. And offers an average of 20% off the retail price of drugs. (Kind of skimpy, but one-stop shopping.) http://www.rxsavingsplus.com/

      SelectCare Benefits Network – over 1400 brand name and many generic medicines for a net cost of only $20 per month. By becoming a member of SelectCare Benefits Network you will be assigned a Personal Care Advocate who will simplify the process of applying for Patient Assistance Programs and make it easy for you to get your medications for very little out-of-pocket cost. http://www.myrxadvocate.com/

      Together Rx Access — individuals and families without prescription drug coverage can gain access to immediate savings on hundreds of brand-name and generic prescription products right at their neighborhood pharmacies. Also connects you with resources about access to coverage options and more. http://www.togetherrxaccess.com/

      Sorry it took so long to respond, but my computer crashed in a big way!

      Comment by Phylis Feiner Johnson — January 11, 2012 @ 7:00 PM

  47. it is not just keppra that this happens. i had more seizures on the generic depakote. i had to pay the whopping $500 each time i filled my script because the generic did that crap to me.

    Comment by Christine — January 24, 2012 @ 3:12 AM

  48. It’s interesting that the FDA claims: “Generic drugs undergo a rigorous scientific review to ensure that they will provide the patient with the same amount of high quality, safe and effective drug as the name brand product,” said Gary J. Buehler, director of the FDA’s Office of Generic Drugs. “This approval provides an additional treatment option for patients who suffer from epilepsy, bipolar disorder and migraines.”

    http://www.emaxhealth.com/110/23551.html

    That being said, there are several arguments against generic drugs in general: with generic anti-epileptic drugs (AEDs), there can be as much as a 20% difference between the absorption and metabolization of the drugs. Which can effect seizure control and even lead to breakthrough seizures.

    Also, 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.”

    However, there is a letter that 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 this it for your files. Perhaps it can help your generic dilemma.

    http://epilepsytalk.com/2011/09/14/make-sure-no-changes-are-made-to-your-medications/

    Comment by Phylis Feiner Johnson — January 24, 2012 @ 5:32 PM

  49. Hi! 
     My name is Brittany and I have recently been diagnosed with partial focal seizures….. I am in need of help because my doctor has not helped in any way…

    this is my story:
    In October i realized something was seriously wrong….. i woke up and walked to the bathroom and i was looking at myself in the mirror then all of a sudden my eyes started to tunnel out and i tried to sit on the floor but i didnt make it in time… i passed out and when i fell i hit my head on a granite counter and then i hit it on the floor…. i woke up and i didn’t have any memory of what had happened or how long i was out for.. i was by myself so no one witnessed it…. ever since then i have been having staring spells and LOTS of memory loss… one of my arms goes numb and i get tingling sensation…. i finally matched all of my symptoms on webmd with partial focal seizures. I then went to my primary doctor and she also thought that it was seizures so i had to do blood work, EKG, MRI and then i finally went to a neurologist. When i went to see my neurologist he didnt believe ANYTHING i was saying… i felt so stupid and he basically just told me that i am stressed!!! i told him that stress doesnt feel like this… my body is telling me that there is something really wrong…. after my appointment with him he said “i dont think you are having seizures, it seems more stress related but we will do an EEG just because….” so after my EEG i went to a follow up appointment with him and he sat down with me and said… “well… i guess you are having seizures…. they are strong enough that you should be passing out!” and he kind of laughed it off….. i felt so disrespected and he didnt really give me any answers about how to manage them or what epilepsy is… he prescribed me the generic keppra and told me that this was 1 or 7 options for me… he stressed that this was the right one for because because it has low risk for birth defects if i wanted to have kids….. I AM 20 YEARS OLD! i have no thoughts of having kids right now….!!! so i have been on the generic keppra for about 3 weeks now and i strongly believe that this medication is making my seizures worse and more frequent….. i would have seizures atleast once or twice a week before medication and now i have them once or twice A DAY!! they are starting to reflect more symptoms of peite mal seizures…. i tried to call my doctor… but he wont answer my calls and doesnt call me back when i leave a message….. his ASSISTANT finally called me and said i could just stop taking the generic keppra if i would like….. it was my call but my appointment wasnt for another 2 weeks and she wouldnt be able to get me in to see my Doctor because he was busy and then he was going on vacation…… so now im stuck… My short term memory is HORRIBLE…. i cant concentrate in school…. im scared to drive…. my seizures are getting worse and i have no answers…. i dont know what to do…. 

    if anyone is having similar issues please let me know and please share you advice….!!

    Comment by Brittany — February 1, 2012 @ 6:47 PM

    • Well, first of all, Brittany, it’s time to get another doc. This one sounds like a certified SOB.

      Here’s the “2012 List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors” based upon forum members all over the country and their positive personal experiences.

      http://epilepsytalk.com/2011/05/03/newly-updated-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors-2/

      Next of all, finding the right drug (or drug combination) is like a crap shoot.

      There are so many meds out there and so many combinations, sometimes it’s a case of trial and error.

      I kissed a lot of frogs before I found my “magic med mix”. It turned out to be Lamictal, which at its lowest level is an anti-anxiety drug and then at it next level, it’s an anti-anxiety and anti-epilepsy drug. And I supplement it with Klonopin which is an anti-anxiety drug.

      I’m no doctor, but that’s what works for me.

      I would snatch my records from that jerk (or even better, perhaps you can get them from the hospital) and take them to a new doc. Or go for a 3rd opinion. You can never be too careful.

      This is you’re brain we’re talking about. (And you may have had a concussion on top of everything else.)

      I also have a primer “Three Secrets to Better Care from Your Doctor”

      Your doc should be a partner in your health not an antagonistic idiot.

      Yes, the Keppra isn’t probably for you. But there’s a whole world of possibilities out there. And don’t settle for any less than you deserve!

      Comment by Phylis Feiner Johnson — February 1, 2012 @ 8:45 PM

    • Hi Brittany,

      Over 6 yrs ago i had a grand mal seizure out of the blue. I was 38 at the time. I never had a seizure before. I didn’t even know what seizures really were. So i called the assistant nurse at the hospital and told them i had a faint spell. They told me to come into the ER right away. So i went and they did the usual, blood tests and then finally a CT scan. The CT scan showed i had a big tumor, on motor strip and sensory strips, more on the parietal part. After they took it out, i was on Keppra generic and my seizures started small, in the finger tips, then my hand, arm and each time i told the doc, he would up the meds, which helped push the seizure out. From once a week to once ever 2 weeks, and on and on. He finally maxed out the dosage of Keppra and i was experiencing worse seizures, bigger then the ones i had before.

      I stopped taking Keppra and the seizures seemed to mellow out, without meds for 4 yrs, then i had a grand mal. I went on Dilantin, that was awful, stopped that and went on generic lamotrigine (lamictal) This seemed to work for a while, it pushed my seizures from ones a month to once every 2 months. For the first 4 months everything seemed good. On the 6th month i had a horrible seizure where i had stiffening and weird noises come out of me. I thought this was do to trigger points had missed that day, stress, over work, lack of sleep. The 8th month i had another horrible seizure. Worse then the one in the 6th month. Didn’t loose conscience, but it lasted for like 5 min. It was hell. Afterwards my head was slumped for a few minutes, I was breathing very heavily. Well i told my doc the story, and asked for the emergency drug Ativan, In case i have another one. After a few email exchanges i had to ask to be taken off lamotrigine because it is suppose to control my seizure and it seemed to be worse. So i told him just on the chance that the meds causing the seizure i wanted off. So now i’m on Gabapentin. I hope it will help.

      So i would suggest you get a CT to rule out any brain tumor.

      Good luck

      Comment by Zolt — February 3, 2012 @ 11:19 PM

      • Brittany and Zolt, I think you might benefit from some more precise diagnostic testing. For example:

        Video EEG Monitoring – allows prolonged simultaneous recording of the patient’s behavior and the EEG. Seeing EEG and video data at the same time, permits precise correlation between seizure activity in the brain and the patient’s behavior during seizures. Video-EEG can be vital in the diagnosis of epilepsy and epileptic seizures. It allows the doctor to determine:

        Whether events with unusual features are epileptic seizures…

        The type of epileptic seizure, and…

        The region of the brain from which the seizures arise.

        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 — February 4, 2012 @ 3:19 PM

  50. brittany, post where you are and maybe one of us can help you with omne of our neurologists maybe…. and personally i would report him. he obviously doesnt know what hes doing. im pretty sure there is some board or something you can reprt him to. id look into that…..

    Comment by Christine — February 2, 2012 @ 1:59 AM

  51. My daughter needs to take brand name Keppra as the generic does not work at all. Does anyone know where to get the brand name for a good price? After insurance I am paying $500 for a 3 month supply. I get it a Walgreens mail order.

    Comment by Kathryn — March 18, 2012 @ 1:32 PM

  52. Awesome site people, cant say I will agree with everything but you make some interesting clonazepam points, keep up the nice work

    Comment by clonazepam — March 30, 2012 @ 2:49 PM

  53. Thanks, Jackery!

    Comment by Phylis Feiner Johnson — March 30, 2012 @ 4:19 PM

  54. hi! this was a really intereasting article. I think there was some press in the uk about it at the time. The main thing i am worried about keppra is side effects in pregnancy. I went from epilim to lamotrigine with worsening seizures it has taken years to sort the seizures out by using a reduced dose of keppra. Do you know anything about keppra and side effects for babies? My uk consultant told me that the register of new mothers with babies on this drug was ‘promising’ but i was not comforted as the wikipedia link indicated that keppra was grade c and not recommended for babies. Do you or anyone else have any info on keppra and babies?
    best wishes (good blogging really enjoy your posts!)
    Ruth

    Comment by epilepsymeandneurology — May 21, 2012 @ 4:42 AM

  55. The U.S. Food and Drug Administration (FDA) lists Keppra in Pregnancy Category C. This indicates that caution is advised, but the benefits of the medication may outweigh the potential risks. There have been no published reports of pregnancy outcomes in Keppra-treated women.

    The risk of defects is generally higher for women who take more than one AED and for women with a family history of birth defects. Advise women who are capable of becoming pregnant to take at least 400 mcg (0.4 mg) of folic acid (folate) daily to help prevent neural tube defects. Women at high risk, such as those with a history of a neural tube defect in a previous pregnancy, should take 4000 mcg (4 mg) daily, beginning before they become pregnant. The effectiveness of prophylactic folic acid use in preventing defects related to Keppra has not been proven, however, so diagnostic ultrasonography at the 18th to 20th week is recommended, especially if pregnancy termination is an option.

    About 20% to 35% of women have seizures more often during pregnancy because of changes in hormones or changes in how their AED is handled by the body. Whether this applies to Keppra is not yet known, so blood levels during pregnancy may help determine if the dosage needs to be adjusted.

    Keppra is excreted in breast milk. According to the package insert, because of the potential for serious adverse reactions in nursing infants from Keppra, a decision should be made whether to discontinue nursing or discontinue the drug, taking into account the importance of the drug to the mother.

    http://professionals.epilepsy.com/medications/p_keppra_pregnancy.html

    As you already know, before you get pregnant, take prenatal vitamins with 0.4 milligrams of folic acid every day, and keep taking them throughout the pregnancy. Folic acid has been shown to reduce the risk of some birth defects by 60% to 70%.

    But one thing I learned recently was that magnesium sulfate has been shown to prevent additional seizures. In recent years, doctors have disagreed about whether magnesium sulfate or more traditional anti-seizure medications (diazepam, phenytoin) should be preferred. Obstetricians favored magnesium, while neurologists favored the more traditional approach. However, a large amount of clinical evidence now conclusively supports the use of magnesium sulfate as the safest and most effective drug for preventing seizures in pregnant women.

    Overall, the data shows that magnesium sulfate can reduce the risk of having ongoing seizures by up to 66%. When compared to other anti-seizure medications, magnesium sulfate has been shown to be more effective and to reduce the risk of other possible complications.

    There are no anti-seizure drugs that are 100 per cent without risk of causing birth defects. 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 eg. Keppra (That’s as good as you can get if you have seizures.)

    http://epilepsytalk.com/2010/05/31/if-you%e2%80%99re-thinking-of-getting-pregnant%e2%80%a6/

    Good luck. I’m sure you’ll do fine, as long as your neuro and OB/GYN communicate and are on the same page.

    Comment by Phylis Feiner Johnson — May 21, 2012 @ 9:34 AM

  56. thank you for that i will look through all those links and digest the information. :)

    Comment by epilepsymeandneurology — June 12, 2012 @ 12:49 PM

  57. Hi:
    My wife has brain metastises (Lepto Meningeal) from breast cancer and started having seizures…most was 4 in one day. So after a trip to the emergency room at Mass General they put her on Keppra, but it is the generic Levitiricetam. She was on 1500 MG a day but she hates it it makes her so tired, so she has weaned herself down to 1000mg. And she still has had a few seizures, though rare, maybe one every 4-5 days. She will take her decadron or her Keppra and I can see her go downhill -listless, weak, whooshing sound in her head -within a half hour of taking either. She thinks the Keppra (Levit.) causes her to have seizures, and the Decadron caused her to hear the roaring in her head. The doctors don’t want to hear that, only that it is her tumors acting up. Any ideas? Could it be the drugs and maybe the generic Levit is truly a problem…and we should switch to the Brand name Keppra, for a trial?

    Comment by tom — December 23, 2012 @ 11:27 PM

  58. For some reason, Keppra seems to be first drug “of choice” among all doctors. I asked my very favorite neurologist, I said “Why?” He said “Because it works.”

    But you’ve got a lot going on here. The tumor, the Decadron and the Levitiricetam. Any one of those could be the culprit.

    Could she have blood work done to see the levels of Levitiricetam in the blood?

    Or better yet, how about switching to another drug entirely?

    I know your wife’s brain is fragile, but a friend of mine had Traumatic Brain Injury and (name brand) Keppra did her no favors.

    There is life after Keppra.

    Idea: How about keeping a seizure diary and noting when your wife has the seizures. How they relate to her meds…happening before, after, etc. and which med. (If she takes one at a time.)

    I’m not a doctor, all I can do is suggest options. But likewise, please don’t play doctor either and mess with the meds yourself. (Although we all try!)

    Comment by Phylis Feiner Johnson — December 24, 2012 @ 9:24 AM

    • thanks. The diary is a good idea…I think she is going to go the independent route anyway. We’ll see how it goes, though I am pleading with her to wean slowly. She just really hates the stuff, the way she feels. The nurse was just here and maybe talked her into a more structured approach. We’ll see.

      Comment by tom — December 24, 2012 @ 10:19 AM

  59. Tom, I understand. When you’re miserable, you don’t give a hoot what anyone says.

    The worst that can happen is she’ll feel more miserable. :-(

    And then maybe she’ll be open to other options.

    This must be so difficult for you. Sending you a great BIG comforting hug.

    Comment by Phylis Feiner Johnson — December 24, 2012 @ 2:38 PM

    • Thanks again. For an update: She did go off the Levit completely.
      One year later and she is doing very well on oral chemo and essiac tea/apricot seeds.
      Also had a shunt that relieved a lot of pressure. BUT the Levit she is convinced caused her to have seizures above what the tumor may have caused. Once she got off it they did stop…but other things also took place…the shunt and radiation.
      A side note: One researcher at the hospital walked out on her when she was having a seizure inside the doctors office – she left and never came back. The Dr was perturbed she wanted to go off Levit on her own rather than follow her advice. I waited for 10 minutes till my wife was better and the Dr never showed up. Out in the hall, we looked and the Dr was nowhere to be found. Protocol is everything I guess, don’t mess with it or else….

      Comment by tom — January 4, 2014 @ 7:27 PM

      • Tom,

        #1 Forget “protocol”. Your wife is her PATIENT. That was unprofessional and I must go as far as to say unforgivable.

        #2 Keppra. Your wife should not and can not make her own med decisions. But there a zilliion other meds out there besides Keppra.

        #3 For some reason, Keppra seems to be the first of defense for doctors these days. I don’t know why.

        #4 It’s wonderful that you’re an advocate for your wife’s health and you dare to question and probe. And I agree you should be dogged in your queries until you receive an acceptable response.

        #5 Doctors are not GODS. You know your wife best.

        Comment by Phylis Feiner Johnson — January 5, 2014 @ 2:05 PM

  60. My son had a seizure reduction when we used the generic brand in place of Keppra!

    Comment by Russell Rawlings — January 2, 2013 @ 11:06 PM

  61. Further proof that everyone is an individual and no two people are alike.

    I don’t take Keppra, but I take the generic brand for Lamictal (after being on the name brand at the start) and it’s worked fine for me.

    So, what works for one, doesn’t work for all.

    I think one of the important factors is CONSISTENCY.

    Comment by Phylis Feiner Johnson — January 3, 2013 @ 9:36 AM

  62. Keppra is the worst , suicidal thoughts, mood swings, just feel like sitting around and watching tv all day long. Still had seizures while on 1500 mgs a day. Awful.

    Comment by adrienecallahan — May 22, 2013 @ 2:12 PM

  63. Re: Drug Substitutions:
    The University Hospital in Newark, New Jersey specifically states their opinion about AED’s (anti-epileptic drug ) medications that basically substitutions of generics may be alright in certain conditions, but epileptics need to check with primary care physician before taking or receiving any generic substitutions. They also clearly state in no uncertain terms that the difference between brand medication in epilepsy and generic has a major difference. That these drugs could inhibit control of seizures in persons.

    My neurologist told me that I must have Dialantin, not the generic, that generics are allowed to vary a certain percentage above and below the prescribed dosage.
    When I tried to fill my prescription I could not get the drug company to fill it. My neurologist had to threaten Anthem Blue Cross/Blue Shield before they would send me what he had prescribed.

    Comment by Wilma Cogliantry — June 13, 2013 @ 8:08 AM

  64. Well Wilma, it looks like we’re both sitting on the same side of the fence.

    GENERICS: IMPORTANT NEWS FROM THE AMERICAN ACADEMY OF NEUROLOGY |

    From the New York Times:

    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.”

    As you already know, generics only have 80% of the actual drug compound in them. The rest is filler and up for grabs in terms of content.

    One more thing.

    There’s a letter that’s 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.

    Prevent Medication Changes…

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

    Comment by Phylis Feiner Johnson — June 13, 2013 @ 8:34 AM

  65. When our sons seizures started in 2010 he was only having petit mals & went unnoticed for a while until they happened more & more & we realized something was wrong. Then before his 1st appt with a pediatric neurologist he had his 1st grand mal. His neurologist started him out on the generic of zonegran (zonisamide)…started out low & kept upping the dosage but seizures continued & he was having 1-2 grand mals a week & still several petit mals. Then he added Keppra (levetiracetam) to his meds…we did see improvement. Eventually his neurologist weaned him off the zonisamide & upped to just the levetiracetam (generic for Keppra) gradually to where he was on 1,000mg in the am & 1,000mg in the pm & our son has been seizure free now for over 2 years with only the occasional petit mal! So the generic is working very well with our son. What I wanted to add to this thread was that there are OTC meds our son takes along with the generic Keppra that have helped. He takes 1,200mg of fish oil in the am, 100mg of B6 in the am & 100mg of B6 in the pm, a multi vitamin in the am, & 5mg of melatonin in the pm. I did a lot of research on the fish oil in people with epilepsy & found nothing but good feedback on it & how for some it’s helped immensely with keeping seizures at bay. We started our son on the fish oil at the same time he was switched to generic keppra & like I said seizures have stopped with only the occasional petit mal (by occasional I mean maybe 1 every 4-6 months). We also have no idea why his seizures started CT Scans, EEG’s, & MRI’s have all been normal. He did have a sleep study which showed Severe Obstructive Sleep Apnea which we are told could have contributed to his seizure disorder starting in the 1st place…..His tonsils were huge so we just had those & his adenoids removed. Definitely seems to be improvement! But for us the generic Keppra has been a godsend!

    Comment by Kathy Robinson DeVerney — June 20, 2013 @ 10:54 AM

    • Good for you, Kathy. You really did your homework!

      B Complex Vitamins – are, without a question, the star.

      In sufficient quantities, especially those that combine B6, B12, folic acid, thiamine and biotin, are vital to the production of numerous brain chemicals.

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

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

      Take a single B-50 B complex tablet twice a day with food. Each dose should contain 50 micrograms of vitamin B12 and biotin, 400 micrograms of folic acid, and 50 milligrams each of all the other B vitamins.

      (If you feel stressed, you’ll probably do best with a higher intake of a B complex.

      A daily dosage of 100-200mg. may be required, split into doses 2 or 3 times a day. Take this extra dose for a short time until you find that you are fairly relaxed, and then cut down the amount.)

      2 g. Fish Oil (with high levels of EPA and DHA) – polyunsaturated omega-3 fatty acids EPA and DHA — found in abundance in fish oil — can be beneficial in the treatment of nearly every illness, especially neurological, cognitive and psychological disorders, also.

      These essential fatty acids are some of the most important building-blocks for our brains, and neurons are much more likely to misfire in the event of omega-3 deficiency.

      Because of the many discoveries relating omega-3 fats to improved brain function, it’s no wonder that many people with epilepsy are turning to fish oil as a natural therapy.

      As for Melatonin, even though I take it, there’s some controversy. You might find this article interesting:

      Epilepsy and Melatonin – Yes? No? Or Maybe So?

      http://epilepsytalk.com/2012/11/19/epilepsy-and-melatonin-yes-no-or-maybe-so/

      Comment by Phylis Feiner Johnson — June 20, 2013 @ 11:54 AM

  66. Thank you…& yes I’ve researched the melatonin thoroughly. That is why we stick to a fairly low dosage of it & it does help & seems to be working great. The generic keppra causes a bit of insomnia for our son so the melatonin helps counteract that. And you’re right about the B vitamins & fish oil….I am a very firm believer that those are also helping along with his seizure medication! I really believe they also along with the levetiracentam help in keeping his seizures under control!

    Comment by Kathy Robinson DeVerney — June 20, 2013 @ 1:32 PM

  67. Yes I can spell..lol…levetiracetam!

    Comment by Kathy Robinson DeVerney — June 20, 2013 @ 1:33 PM

  68. Who cares if you can’t spell. You did a GREAT job on your research!!!

    Comment by Phylis Feiner Johnson — June 20, 2013 @ 2:28 PM

  69. I was put on the generic brand of Keppra about a month and a half ago. It, by far, has been the worst med I have ever been on! I started having seziures about 18 years ago and have been on many medications to try and control my seizures and migraine headaches. This medication caused me to have increased seizures and depression. I also had a sharp increase in my headaches. But I what was the most debilitating for me was how tired it made me. I took 500 mg at night. I was tired and groggy all day, and by about 4:00 pm I was falling asleep. There were days when I would fall asleep around 6:00pm and not wake up until the next morning.
    Thank goodness I have a great neuro who really listens to me. She took me off the generic Keppra and put me on Vimpat which I take along with Topamax. I already feel like a different person. I’m keeping my fingers crossed and praying a lot that this combo works!

    Comment by Janine Bolds — June 24, 2013 @ 12:26 PM

  70. Whew! That was a good move, Janine.

    Just for the hell of it, you might want to read:

    Keppra – What People Are Saying…

    http://epilepsytalk.com/2010/10/15/keppra-%e2%80%93-what-people-are-saying%e2%80%a6-2/

    You’re not alone! (But that’s all behind you now, thank goodness.)

    Comment by Phylis Feiner Johnson — June 24, 2013 @ 2:24 PM

  71. Do you mind if I quote a couple of your posts as long as I provide credit and
    sources back to your blog? My blog site is in the very
    same area of interest as yours and my users would genuinely benefit from a lot of the
    information you present here. Please let me know if this ok with
    you. Cheers!

    Comment by Evelyne — July 31, 2013 @ 1:57 PM

    • Evelyne, Of course!

      This informartion is meant to be shared, not hoarded.

      And I would appreciate the link to Epilepsy Talk or credit, as you suggested.

      Thank you for being kind enough to ask.

      Comment by Phylis Feiner Johnson — July 31, 2013 @ 3:19 PM

  72. My child was on Keppra years ago and generic keppra made her seizures and behavior a lot worse .

    Comment by susan meehan — November 25, 2013 @ 9:31 PM

  73. It’s unfortunate, but sometimes it’s the luck of the draw.

    If it’s of any comfort to you, as you can see, you’re not alone. :-(

    Comment by Phylis Feiner Johnson — November 26, 2013 @ 9:26 AM

  74. Hello
    I am a 56 yo male, good heath etc. I had a “seizure”
    or something 6 weeks ago. Felt myself losing balance, went down, was taken to the hospital, “seizing” ( not violently) for 13 minutes. CAT done, found a frontal lobe injury from 1994, (car accident). They put me on Levetiracetam 500 mg am 500 pm and basically sad I would be on this the rest of my life. After reading some of these stories WOW. I have not been diagnosed with Epilepsy or anything else. I would love some advice. I don’t have bunch of side effects other than dizzy once in a while. But why keep putting this in my body if I don’t need it.

    Comment by Jon Johnson — November 26, 2013 @ 12:38 PM

  75. Officially, you’re not part of the “club” until you’ve had two seizures.

    On the other hand, traumatic brain injury can have a lasting effect.

    Seizures may develop immediately after an injury to the brain or may develop in delayed fashion, showing up months or years after the initial trauma.

    Generally speaking, the risk of post traumatic seizures is related to the severity of the injury — the greater the injury, the higher the risk of developing seizures.

    Even mild to moderate injuries can result in seizures.

    It’s thought that a head injury disrupts the pathways of the brain and that an epileptic seizure can be viewed as a sort of short-circuit of the brain’s electrical functioning.

    During the seizure, the electrical fields in the brain are overloaded, resulting in seizures.

    I hope this helps…

    Comment by Phylis Feiner Johnson — November 26, 2013 @ 1:38 PM

  76. Thank you for the response. The head injury was pretty nasty, three subdural hemotoma’s (sp sorry).
    I guess I would just like to question the cause of this and seek alternatives to the Levetiracetam. I have not been given a reason for it other than what seems like a rubber stamp. In reading about it recently it would seem that there could be many reasons for the blackout including dehydration, lack of sleep etc.
    I can’t seem to get any response to these possibilities. I will keep digging.
    Thanks

    Comment by Jon Johnson — November 26, 2013 @ 1:52 PM

  77. Hemotomas (yes, you DID spell it right!) can be real dangerous. But, on the other hand, so can Keppra.

    With all the zillions of drugs on the market, there’s no reason you should have to suffer.

    And I agree. I think your prescribed dose is a bit over the top.

    First of all, I would keep a daily diary, noting your feelings (physical and emotional) your reactions and your activities.

    That might shed some light on things.

    But mostly, I would take a copy of my records and go for a second opinion.

    Be prepared — with your concerns and questions at the top of the list. (You know, neuros only have so much time. Then you’ll be turned over to a Physican’s Assistant.)

    I don’t know where you live, but 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/

    But I DO agree. It sounds like a bit of overkill, at least, to me!

    Comment by Phylis Feiner Johnson — November 26, 2013 @ 6:33 PM

  78. This was an interesting read for me. James has been on generic Levetiracetam since April of last year. His seizure activity has only gotten worse. It makes me curious if it is the handful of 4 different anti-seizure meds that he is on that is actually linked to his increased seizures.

    We will find out in a few weeks. He FINALLY has an appointment with a new epileptologist. I am anxious to see what comes out of it. It has been a long time coming to get this far, and he doctor assures us that he will most likely leave the hospital on a single AED instead of four. Given what I’ve just read about the levetiracetam I hope it is not that one.

    Comment by Scott Oosterom — January 4, 2014 @ 7:06 PM

  79. Try to keep a daily seizure diary of his sleep habits, activities, emotions (good and bad), what may precipitate a seizure (Triggers? Auras?) and, if you can, the timing, and duration of his seizures.

    This should give you and his (new) doctor at least a picture of what’s going on.

    The idea of a single drug is fantastic. You’re not a doc and neither am I. So we can’t exactly play one.

    Nevertheless, you can at least observe what’s going on, and remember, you don’t have to necessarily blindly accept the med recommendation.

    Be prepared with questions and don’t feel afraid to question the doc.

    Although I think the ambition to get your son on one med is an admirable one…the question is: how realistic is that?

    Comment by Phylis Feiner Johnson — January 5, 2014 @ 1:48 PM

    • One more thing Scott. Has your son had blood tests to check the drug levels in his system?

      Comment by Phylis Feiner Johnson — January 5, 2014 @ 1:53 PM

      • Yes. He had lab tests done a few weeks ago. Everything was normal. Three different doctors reviewed the results (just because of how things happened when we were getting into the epileptologist back in November). “Nothing special or notable” showed up on the lab results. So I guess that is good, but it still did not explain anything about why he has so many seizures.

        Comment by Scott Oosterom — January 5, 2014 @ 4:52 PM

  80. This is like stump the chump. Is it possible he could have something else?

    Comment by Phylis Feiner Johnson — January 6, 2014 @ 8:16 AM

  81. I’ve had trouble with generic Keppra from a certain company (Mylan), but do fine with generic Keppra from Torrent drug company. I can order it off RX Outreach for $50 for 3 months worth (270 pills). At the drug store where I live I would have had to pay $140 dollars A MONTH for 90 generic pills and it had to be the kind they sold from Mylan company. I would be having to pay $140 a month for generic, even with Medicaid. Don’t know why the price at the drug store is so high for generic Keppra , even when Medicaid pays most of it. This drug store has the lowest prices around this area.

    Comment by Rhonda — January 6, 2014 @ 9:32 AM

  82. Another thing you might consider — and that’s mail order.

    My doctor suggested this to me, but I’d suggest you get a reputable name from your doc, because some of these places can be tricky.

    Comment by Phylis Feiner Johnson — January 6, 2014 @ 9:37 AM

  83. this is the first time i’ve found this site and read this article and i found it via a special needs mom friend of mine,but i’m curious of some responses.
    My daughter is 14 years old with Wolfe-Hirrschorn Syndrome (AKA: 4p- syndrome) and has had seizures since birth. 3 years ago, she was admitted to PICU for non-stop seizure activity x6 weeks. She went from 2-4 seizures a year to 10 seizures an hour. She had been on Phenobarbital and Depakote for all those years. In the PICU they had her on 8 seizure meds and weaned her off Depakote because of Steven Johnson’s syndrome, creating now a new allergy to it. She went home on Phenobarbital, Keppra, Topomax, and Chlorazepate. When she first got home it was only10 -15 seizures a day and I was expected to adjust to her new “norm” per the neurologists. But over the last few years she has increased to 10-12 seizures an hour and with little control and max doses on all 4 AED’s. Sometime in the last 2 years the pharmacy automatically switched her keppra from Brand-name to Generic because Medi-Cal would not pay for Brand-name. I accepted because i can’t afford to pay, but don’t know when or if it has made any changes in her seizure activity. FYI, she cannot speak, walk or talk as part of her syndrome. Her mentality is that of a 3 mos old. Her neurologist just continues to increase her dosage as needed. I’m going to present this article to her Neurologist, but am curious if weaning her off Keppra altogether would make an impact?? Suggestions?

    Comment by Elsa Belmont Bear — January 6, 2014 @ 2:48 PM

  84. In my humble opinion, I think it’s more than the meds.

    Have you considered Trigeminal Nerve Stimulation — A Breakthrough Technology Reducing Seizures by Up to 66%

    http://epilepsytalk.com/2013/03/24/trigeminal-nerve-stimulation-a-breakthrough-technology-reducing-seizures-by-up-to-66/

    And I don’t know if this is applicable to her, but another thing to think about would be non-invasive Gamma Knife Surgery. (It’s much less scarier than it sounds.)

    The Gamma Knife — Non Invasive Surgery

    http://epilepsytalk.com/2012/09/12/the-gamma-knife-non-invasive-surgery/

    Transcranial Magnetic Stimulation (TMS): Case studies have found that this technique can reduce seizure frequency by over 60% in some patients.

    It’s a noninvasive type of brain stimulation which uses a strong magnet held outside the head to deliver electromagnetic currents. In short, it alters the electrical activity in the brain.

    This therapy has shown great promise for reducing seizures by reducing neuronal excitability.

    (Sorry, I haven’t published the article yet!)

    There ARE alternatives. I’m no doc, but perhaps there’s some type of non-invasive surgery for her.

    Comment by Phylis Feiner Johnson — January 6, 2014 @ 3:19 PM

  85. I want some feedback!!!
    My neurologist suggested that I switch from Dilantin to Keppra. He says that in the long run, Dilantin will cause osteoporosis. I just picked up my first bottle today, planning on starting Sunday, but now have a mental block due to comments that I have read. Been on Dilantin 40+ years. 35 with seizures. What would you guys do?

    Comment by David G — March 8, 2014 @ 12:42 AM

  86. David, I’m no doc, but my long-term experience with Dilatin was hair loss, galloping gum rot with osteo in my future. So, no, he wasn’t kidding.

    On the other hand, these days, Keppra seems to be the “go-to” med.

    When I asked my neuro hero (Orin Devinsky) why, he simply said: “Because it works.”

    Like everything else, it’s a matter of body chemistry. You honestly won’t know until you try it.

    Give it a shot and keep a daily seizure diary. Note your sleep habits, daily activties, emotions (good, bad, violent or wimpy), when you take your meds, when seizures occur…how often, and if possible, the duration of the seizures.

    That will give him a clearer idea of how your body (and you) are coping with the Keppra.

    But try to pay attention to evey detail, so that if it’s a disaster, you can make a change, sooner rather than later.

    Good luck and please tell us how you do, David.

    Comment by Phylis Feiner Johnson — March 8, 2014 @ 11:46 AM

    • Thank You for your feedback Phyllis. Still hesitanant cause I’ve been seizure free for since 2001. You know the old saying….”If it isn’t broken, why fix!!!” I guess I just have to put trust in my neurologist. What ywould you do after taking it for 40+ years and being seizure free for 13?

      Comment by David G — March 8, 2014 @ 2:18 PM

  87. I would take nothing.

    Yet, I’m speaking out of turn here, David.

    I’m on Lamictal and Klonopin, just for “safety” measures. I’m seizure free and a happy girl.

    So, the question arises again, why would you need Keppra for “maintenance”?

    Comment by Phylis Feiner Johnson — March 8, 2014 @ 5:59 PM

    • I asked my neurologist the same question, and he only brought up the issue of osteoporosis. I have no issues changing drugs, but just want to know that I will continue staying seizure free!!!

      Comment by David G — March 9, 2014 @ 12:07 AM

  88. His reasoning sounds pretty lame to me…

    I agree that getting off of Dilantin is a good idea because of it’s potential for osteo, but there are zillions of other drugs out there. And Keppra is kind of extreme.

    Either ask him why (without a wishy-washy answer), he thinks it’s necessary, ask for an alternative med, or get a consult from another doc.

    Comment by Phylis Feiner Johnson — March 9, 2014 @ 11:21 AM

  89. yes i was on Dilatin & mysoline , 9.5 yrs ago , had one of my worst seizures .. 4 in one day injured my back ,to boot .. the dr at UCD did v-eeg , wanted to catch more seizures , too .. he put me on keppra , had no issues since , back then there was no generics , if there was , it wasnt approved by insurances .,couldnt believe on how much it cost , even with insurances .. think back bout 5 yrs ago , one day , the place where i brought my keppra , told me , they have Levetiracetam, , that the insurance approved of .. i told them , well what bout , the keppra , they still approving that , { they couldnt really answer me on that , told them the RX have to be approved by the drs & also insurance too ..they both approved the generic brand , it saved me some money but not as much .. i’d say keppra was running bout 400.00+ , { w/o insurance } with insurance , cost was 200.00.. w/o .. went to costco , for past few yrs , with my insurance , cost is , for keppra , is 350.00 , generic is bout 80.00 , after co-pay , on high deduct , cost is bout 22.00 <– BIG YES !!.. this yr , was calling our insurance comp , on a certain matter , then the lady told me ,if i wanted to save more $$$ that i would have to switch RX . { pharmacies } , i asked them well costco is very polite , & would like to stay there , Sams club is what i went with , being the meds Levetiracetam, , would be cheaper ,, BIG MISTAKE .. { i think ..} paid close to 107.00 my deduct , instead of the 80.00.. now hope , they hold true on the cost after , my deducts are made .. { still have the cost med-cad booklet just in case ..lol, my husband asked , if it was made out of gold .. { because of the price ..}
    as for how it is for me , havent had a seizure since i have been on the generic brand .. i have been on other meds while on Levetiracetam, , topamax , & 3 other newer brands , but with topamax , couldnt take my high blood pressure meds { HCTZ (hydrochlorothiazide} Had bad side effects , even the pharmacy , never knew , or my reg dr .. even the neuro nurse !, had to show them the paper work , even the PDR ,<– BEST BOOK TO GET ,! BARNES & NOBLE , 75.00 .. shows all meds & side effects ..} , but other meds , Vimpat, didnt worked , also before that one was
    lamotrigine (lamictal] , that too didnt work , too many side effects .. even my tongue swelled up !, & bad rash .. as for vitamins , take 200 mgs of B-6 , B- 12 ,500 MGS , OMEGA 3-6-9 , CoQ10, NIACIN , { NO FLUSH } COCONUT OIL tabs , ,FLEXSEED OIL, CRANBERRY , D-3 2000IU , GRAPE SEED / RESVERSTROL * MAGNESIUM , 200 , & last , is a PROBIOTIC { i get this at costco .. , { reason for some of these , B vitamins help out , , omega , is good for the brain , but others are also , for your heart .. the probiotic , is for your stomach .. many of those with seizures , have stomach , issues .. { cant handle some milks too .. even certain grains .. } i have gone with organic foods , to even meats , no salt , either .. so no canned items , even the low salts have the same amount as the regular cans .. , fresh fruits & veggies < you can get best veggies at farmers marts , or even at walmart or costco .. & cheaper than your local , supermarts !, stay away from all preservatives , dyes , if you have to switch milks , go to either organic vanilla , or coconut milks , no GMO either .. saw one post for "Melatonin " NO !! worst thing for an E , with seizures .. it has been ok for some ppl , but , not for those with seizures .. saw this on DRUGS.COM , :Before taking this medicine

    You should not use melatonin if you are allergic to it.

    Ask a doctor, pharmacist, or other healthcare provider if it is safe for you to use this product if you have:
    high blood pressure;
    diabetes;
    cancer;
    depression; or
    seizures or epilepsy."
    SO REALLY , have to really watch it .. on what OTC drugs/ to take .even ask your nuero , too ..

    Comment by cathy — March 9, 2014 @ 3:20 PM

  90. GREAT INFORMATION CATHY!

    Here are some articles you might be interested in (although you seem to know the info already…)

    DEEPLY DISCOUNTED DRUGS WITHOUT INSURANCE (They’re all generic.)

    http://epilepsytalk.com/2010/03/18/deeply-discounted-drugs-without-insurance/

    Same Generic Dug, Many Prices

    http://www.consumerreports.org/cro/magazine/2013/05/same-generic-drug-many-prices/index.htm

    Brain Food for Your Health…

    http://epilepsytalk.com/2011/06/21/brain-food-for-your-health%E2%80%A6/

    Probiotics — Food For Thought

    http://epilepsytalk.com/2013/11/24/probiotics-food-for-thought/

    Comment by Phylis Feiner Johnson — March 9, 2014 @ 4:06 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I'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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