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  #81  
Old 07-16-2012, 03:01 PM
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Thank you Maureen for responding. Can I ask...how long have you been on meds? I started out on something (can't remember) but had extreme anxiety & horrible thoughts & couldn't sleep so he switched me to Topamax & Phenobarbital. I've only been diagnosed for 1 1/2 years.
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  #82  
Old 07-16-2012, 03:12 PM
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I tried generic Keppra XR two months ago in the hopes of saving money (insurance covers the brand, but it still runs me about $200 each month). I did terribly. Was on it for two weeks and became a complete wreck. Was an emotional basket case, crying and depressed one minute, angry and homicidal the next. My boss actually took me aside and suggested I take time off, because he didn't want me getting in trouble at work! So, I switched back to Keppra XR which works well for me (I take 2000 mg daily). Now, though, I'm not doing so well since going back. Am exhausted all the time and experiencing a horrific rash that is driving me nuts!
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  #83  
Old 07-16-2012, 04:21 PM
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I was hit by a car when I was 16 (1979). I had a couple of seizures while in a coma and was given Dilantin. I took the Dilantin for about a year, then was taken off, told it wasn't likely that I'd have another seizure. Fast forward to 2005, had a seizure. They did some tests and said it was likely a one time thing. I had another one after 7 months. That's when I got put back on Dilantin (so late 2005). By early 2008 I was having real problems with my memory and got switched to Keppra. Since then I've had a couple of seizures and have had to increase my dose and add clobazam 10mg at bedtime. Like I said, I don't like the side effects. Keppra is usually taken twice daily, but I find that is too much and I get highs and lows so I spread it out to three times a day....I don't feel quite as pooped out. But after saying all this, I am now just over 2&1/2 years seizure free....something is working! Good luck to you.
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  #84  
Old 07-16-2012, 04:53 PM
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Koda1021..omg..you are going through a lot! I hope you find what works right for you & feel better.
Maureen..omg to you too. How awful you had to go through all that. I am on my 1st week and am only taking 1 twice a day then next week up to 2 a day.
Hearing stories like you guys, is one reason I don't tell people what I have. My seizures (I don't even like calling them that) are complex partial. I feel like I am getting dizzy or might fall & they only last a few seconds. A big one will make me grab for something to hold on too & afterward, I cry uncontrollably. I feel that my experiences are not severe enough to even be on this website with you guys. You are going through so much more than I. I apologize for taking your time. Congrats on your 2 1/2 years . I wish you all the best. I hope a cure is right around the corner.
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  #85  
Old 07-16-2012, 07:32 PM
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Thanks for understanding my situation, but DO NOT FEEL THAT YOU DON'T BELONG. I know that I feel that way sometimes too. I don't have nearly as tough a time as many on this site or other sites. But we all learn from each other, give a shoulder to lean on, and give hope to each other. Good luck, it will come together for you, we all just have to keep fighting!
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  #86  
Old 07-16-2012, 07:41 PM
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Originally Posted by cnsgrammy View Post:
Koda1021..omg..you are going through a lot! I hope you find what works right for you & feel better.
Maureen..omg to you too. How awful you had to go through all that. I am on my 1st week and am only taking 1 twice a day then next week up to 2 a day.
Hearing stories like you guys, is one reason I don't tell people what I have. My seizures (I don't even like calling them that) are complex partial. I feel like I am getting dizzy or might fall & they only last a few seconds. A big one will make me grab for something to hold on too & afterward, I cry uncontrollably. I feel that my experiences are not severe enough to even be on this website with you guys. You are going through so much more than I. I apologize for taking your time. Congrats on your 2 1/2 years . I wish you all the best. I hope a cure is right around the corner.
Thank you for your kind words, and I will repeat what Maureen said in the sense of not feeling like you belong. We all manifest in different ways, as is obvious by all our stories. We ALL belong. Just know that you have support here!
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  #87  
Old 07-16-2012, 10:04 PM
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You guys are wonderful. Thank you so much. I appreciate you guys saying that.
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  #88  
Old 03-15-2013, 12:53 PM
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Originally Posted by Brent View Post:
The last time I posted on this thread was a year ago. At that time, everything was going well on generic levetiracetam. Since then, I have had the manufacturer change about four times. (This is due to changing pharmacies and each of those pharmacies changing manufacturers once.) Here's my experience:

Each time I switched I went through a period of kepprage, headaches, and other side effects similar to when I first started taking levetiracetam (though not as severe or long-lasting.) I might be inclined to chalk that up to psychological factors - just expecting symptoms, so getting symptoms.

However, I just had the manufacturer changed on me in November to one that I had never had. The side effects were awful. I had a headache almost 24x7, frequent bouts of kepprage, an eye twitch that was nearly incessant for a month, and some concentration problems (possibly just due to the other symptoms). What's more, while I was up to about 4-6 weeks between seizures, under the new manufacturer seizures increased in frequency until I was having them every few days (which is about what I experience without meds).

So, of course, I spoke with my doctor. We got back on levetiracetam from another manufacturer (one I had taken previously). This was about a week ago. Within a couple of days, the headache was gone, the eye twitch is only occasional now, kepprage is infrequent and milder than it has been, and I haven't had a seizure in a week.

This is just anecdotal, and your mileage will vary. But, I can say pretty conclusively that all generics are not created equally. I don't know that any one is better than any other, but I do know that at least one effects me very differently from at least one other.

As far as the overall effectiveness of generic vs. Keppra, I don't know that there is any strong evidence. There are stacks of people that do well on one and not the other. I think it really comes down to the fact that there is variability between manufacturers, and that UCB (the maker of Keppra) is just one of them.

-B
Hi Brent, If possible would you have the manufacturer of the leviteracitam that gave you problems.
I too had problems on the generic, never tried the name brand, my doctor denied it was the meds. but in 7 months my pharmacy changed manufacturers 4 times.
mylan then solco(had a seizure within a few weeks, then teva(4 seizures in 7 months), And they kept increasing my dose to a finally 6000mg a day. After weaning levetiractam completely and going back on my old standby dilantin, I was seizure free for those 7 months, but had another, so now I am trying topamax,. Dilantin worked for me for ten years until around 2008 and then all of the formution changes etc. seemed to affect my doses.
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  #89  
Old 03-15-2013, 12:58 PM
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Originally Posted by shannanc1 View Post:
My daughter is on Keppra and trilipteal. Our insurance would not pay for the keppra and she started have more partial complex and had a tonic clonic which she had not had one in over a year. it took two months before we could get back on the name brand.

She was in both FDA trials for children under ten. She has been having some odd episodes. they are like a petitee mal that lasts along time
How is your daughter doing now on the name brand. I think that the generics definitely cause a problem. I had more seizures in 7 months than I did in several years. The manufacturer of the med changed 3 or 4 times during that time and the doctors just kept increasing my meds to finally 6000mg a day. Who knows what damage that has done in the long run. It is very frustrating that no one listens.
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  #90  
Old 03-30-2013, 10:45 PM
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YOu know what? I am getting vns because of my partials and myoclonics now. And I am on brand.You have to stop those. Complex partial, I think. I'm a mom of a 15 year old and some time the whole day will me having those seizures. Status. From my point of view you can go thru half the day and not know what happenned. When she does that all day she is in status. Depakote or depakote sprinkles are good. There is a book called Seizures and Epilepsy in Childhood A Guide By John m. Freeman, MD 3rd edition. Those seizures are the worst. The book has names of most of the meds. how they work, and there half life and stuff. I say pharmacist is best. I gave this book to my childs teacher. It also talks about behavior. Maybe you already have it. Good luck.

Last edited by stilldancing_98; 03-30-2013 at 10:49 PM.
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  #91  
Old 12-30-2013, 05:33 AM
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Hi, I'm new here. I joined tonight, because I did a search for Levetiracetam XR generic and found a link to this post. I joined CWV so I could join the discussion and maybe find a new community.

I have been taking the generic Levetiracetam XR since it became available. I had been having bi-temporal and Rt. Frontal lobe seizures daily for many years. After I started Keppra XR I improved to where I was only having one or two seizures per day and then I improved to having only a few per week, but that involved avoiding triggers most of the time—hard or impossible to do as you all probably know.

About 2 weeks after I started taking the generic—and I know this is unbelievable sounding—I stopped having seizures. I had a couple of incidents where I felt like I was starting to have a seizure. My mind started to cloud over and I had a funny feeling in my head, but that went away and never developed any further. I am holding my breath however, because... well I've been having seizures for so many years and with so many complications and hospitalizations I can't help thinking this is too good to last.

Of course I can't say what caused this incredible improvement. I mean it's unbelievable to think that a generic would work better than the brand name. But I can say very definitely that I did not get worse with the generic. And although I can't say why I got better, I did get better. The generic is saving me quite a lot of money, since I don't have to buy that brand anymore—if this holds out.

I hope the rest of you do well with yours. I welcome any questions or comments or just a hello. I didn't know where to introduce myself officially, but this look like a good place to start. If there's another place to do this please let me know, but I'm very happy to have found this forum.

One other thing… on your generic tabs do the markings say L800? I thought it was an odd mark for a 500 mg XR or ER tab. I just got a new bottle of generics and they look different from the others, so that has me a little concerned.

PS: I think I might have posted this in the wrong place first. I hope get used to have this works quickly!
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  #92  
Old 01-01-2014, 12:39 AM
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Was just wondering how they test for keppra toxicity or if they do? Just starting it myself. Thanks...
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  #93  
Old 01-01-2014, 12:53 AM
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Hi, Nanellen,

I've never been tested for Keppra toxicity. I'd be curious if anyone else has. When I asked my neurologist about it, she said that it wasn't necessary with Keppra. I haven't had any problems, but now that I think about it I don't know how she would tell.

Wishing you good luck with Keppra. I'm so grateful to have it myself, since nothing else worked for me.
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