Anyone had positive experiences on keppra?

[madam butterfly]

I have just started taking keppra this week and i keep hearing horror stories about how bad it is. Thought it would be nice to get the thoughts of people who had positive experiences

[travel bug]

Hello Madam Butterfly(great name by the way!)

I haven't had any of the awful side effects you hear about with Keppra. I was concerned too when my doc suggested the change even though I hated the Dilantin I was on.The only bad thing I've dealt with is sleepiness, and that might be attributable to other causes. I like Keppra MUCH better than Dilantin which made me feel jittery, irritable, and very sensitive to light and sound., plus I wasn't able to hold a steady blood level.

For the most part I've had good seizure control with Keppra: 1 full breakthrough seizure due to drug interaction, some aura-like seizures due to tumor growth (the main cause of my seizures), some aura+"mini-seizures" post craniotomy which were to be expected. Other than that, I've had some possible focal or myoclonic seizures recently, but they might be muscle spasms instead. That may not sound like good control, but it's as good as can be expected with my condition. And considering the difficulty many here on this forum have finding something that controls seizures without side-effects, I think I've been pretty lucky with the Keppra.

Of course, everyone is different, but Keppra isn't always the horror drug that you may read about.

Good luck! Keep us posted on how you are doing

[Ann T.]

Madam Butterfly:

I agree with Travel Bug. It's not the horror drug you may have heard it is. Keppra makes me sleep like a baby. While it makes me cranky at times, I think it's due to lack of nap, not 'Kepprage'. I've taken it for 10 years & while I've had breakthough seizures, overall it's a very good drug, with very few side effects for me, too. If you have any questions, I'm sure CWE members will help you find an answer. Take care! :-)

[Crystal11]

Hello. I have been using Keppra XR for the last 5 years now a long with Lamictal XR. Before that I was taking Tegretol XR by itself at 600mg a day.Dilantin didn't change anything and so I was taken off of that one. but I am glad because I too heard bad and scary things about Dilantin- but some people on here love it and it helps them a lot.
The Keppra XR works very well for more and helps me with the seizures triggered by light/patterns which don't happen hardly at all. I used to have up to 20 complex partial seizures a day which usually last 45 sec and the longer ones would be around 3min long. So for me, Keppra XR has helped a lot. I did have to add Lamictal XR for even better control. I take 3000mg of Keppra XR and 400mg of Lamictal XR a day. I also have migraines and so there are two other meds I use for those when they flare up..
Sometimes I would rather have a seizure than have a migraine. You at least know something happened, but you want to sleep. Migraines you can't sleep at all.

Anyway- my twin sister has Epilepsy as well/complex partial. She tried Depakote which made her have stomach problems and then she took just Keppra and boy...she was mean and argued and just wasn't herself at all. She was a total pain. I knew it wasn't her and it was the meds. So after a while she was taken off of it. She wants to go to the neurologist again and start everything over- which I'm still trying to get her to do..stubborn twin! She knows that meds will help but after having a few reactions, nothing life-threatening, she is scared of meds. Everyone here has to take a risk and know that there are possible reactions to the meds we use.
Anyway- no keppra for her at all! LOL

For me, it works great and neurologist told me that Keppra and Lamictal are supposed to work well together. So far so good. I have a few "little ones" as I call them- but those last 20-40sec.

Sometimes I like to start out with a medication without researching the side-effects because then I start to analys everything too death LOL. But when something does happen, you'll know it- at least I did with Tegretol by itself.. boy- I was crying and thinking about death and could not sleep and psychologically messed up! But fine now..lol
Told neurologist and she put me on Keppra XR..
lol keppra is my friend.....
LOL wow I'm sleepy and goofy..

Take care,
Crystal and her guide Umbro

[dfwtexas]

I have been on Keppra since I got diagnosed a little over 2 years ago. My levels have been adjusted several times, but I am very hopeful that I am at the correct level now. Keppra has been a Godsend drug for me. My last complex partial was October 7th!
Seizures meds are a lot like E itself...so different from person to person. It's important to be aware of side effects of the drugs so you know what to look for....but don't let that overcome what the drug could do for you personally.

[neilB]

Hi MB,

Well I've been on Keppra (2500mg/day) for about 3 months and the worst I can say is that it makes me sleepy and a little memory loss (but that couuld be old age ). I've recently been weened off of carbamezapine (400mg/day) and when I was on just that alone I was having seizures. So far so good and NO Kepprage. I was on Dilantin about 5 years ago and talk about behavior changes WHEW

[Nakamova]

Hi MB,
I'm not on Keppra, but I know of at least two folks who are and who are very happy with it. One is my epilepsy nurse! The other is a friend-of-a-friend who had a tough time with other anti-epileptic drugs before finding Keppra.

Best,
Nakamova

[peachy]

I think it makes me a more irritable than normal. All other problems have gone away.

[ddr1166]

HI! My husband is on Keppra (1500 mg. per day) and hasn't had any serious issues with it other than having a hard time sleeping when he went from 1000 mg/day to 1500 mg per day. We discovered it was probably because the increased dosage somehow caused it AND because he was taking it at night. He now takes it in the morning. He also stops all caffeine at noon. There's some memory loss, but so far nothing significant. Good luck!

[Loopy Lou]

I find that Keppra is working much better for me than Lamictal was.

The only problem is that i get really really sleepy, and i don't have full control yet.

But hey, still playing around with dosages. At 2500/day now.

[little fruitcake]

I was on keppra a few years ago and I thought is worked great for me, I was feeling fine and no episodes but it must have made me a little cranky because they yanked me off of it real fast. So after a handful of other meds, I am back to Dilantin and now Primadone. Everyone is different so I wish you the very best.

[BuckeyeFan]

I definitely had side effects from the Keppra. Mostly the Keprage that you hear about. However, after I recognized it, I was able to control it better. I think the big thing is to NOT try to hold it in. Instead, let the ander come out in safe ways. I would yell at the TV and politicians, worked hard in the garden and exercised a lot. Any release of the emotions towards inanimate objects helped in my opinion. It could not stay bottled up.

The POSITIVE side is that I did NOT have a tonic-clonic the entire 5 years I was on it. I also take Dilantin (for 29 years). Towards the end of 5 years, I was having a lot of focus/concentration issues and did have to change to Lamictal. However, I am thankful for the 5 years it did give me. The dilantin never fully controlled my seizures.

Another plus is it doesn't work through the liver. Most anti-epileptic drugs are hard on the liver long term.

[SeizetheNight]

I have been on Keppra for about a year now. It started at 500mg twice a day, but every time I have a seizure my neurologist raises it. I am now at 1500mg twice a day. I don't know if it is actually doing anything to help control the seizures, as they always happen 4 to 5 months apart anyway, which is about the same as when I was taking no meds. I did experience the 'kepprage' when I started taking it, but I have been taking the B6 like suggested, plus I am a pretty mellow person to begin with, so it hasn't really been an issue. My only other complaint is memory problems, which I don't know whether to blame on the seizures or the meds (or maybe just getting older, but I don't think that is it).

SeizeTheNight

[dfwtexas]

I have been on Keppra for about a year now. It started at 500mg twice a day, but every time I have a seizure my neurologist raises it. I am now at 1500mg twice a day. I don't know if it is actually doing anything to help control the seizures, as they always happen 4 to 5 months apart anyway, which is about the same as when I was taking no meds. I did experience the 'kepprage' when I started taking it, but I have been taking the B6 like suggested, plus I am a pretty mellow person to begin with, so it hasn't really been an issue. My only other complaint is memory problems, which I don't know whether to blame on the seizures or the meds (or maybe just getting older, but I don't think that is it).
SeizeTheNight

My seizures started about 2 1/2 years ago. Some days I would have several and then I could go a few weeks without one. My Keppra has been adjusted several times, I am now at 1250mg twice a day. I am finally feeling good, that it is at right level. neurologist did blood work last week and he agrees with me after seeing labs. I met a lady about a year ago that told me her neurologist told her that 2 years is average time to get patients at right level. I do have short term memory issues, but my friends say I am no worse than they are!