Keppra users: do different dosages cause different side effects?

[ddr1166]

Hello again, all - more questions...can't say how MUCH this site has helped me from going crazy and not feeling so alone.

My husband's been adjusting his Keppra dosage. Has had two breakthrough seizures. Last dosage was 1500 mg/day (in the pm) and he had insomnia. So, he switched to taking it in the am. Helped a lot. After 4 weeks, he seemed to be adjusting well and acting normal (no odd personality changes) again.

Then, he had a breakthrough seizure. Saw the doc this week, and he's increased his dosage to 2000 mg/day. It's been six days.

1) Do you find it takes 3-5 days to notice the new dosage?
2) When you start a new dosage level, have you noticed that the side effects are different? Meaning, the last dosage gave him insomnia, and this time with the higher dosage, he's really tired.

Any ideas/thoughts/suggestions? Thanks much,

D in Dallas (spouse)

[Loopy Lou]

It's hard to say, because everyone reacts to their medication differently.

Keppra just makes me really sleepy all the time, but i know that when i was changing dosages, i felt the side effects more for a couple of weeks.

[Cint]

I had some breakthrough seizures myself last week, but my neurologist didn't make any adjustments to my meds because we're at the limit on mine. I have found over the years whenever I start a new medication it does take several weeks before my body is accustomed to a new dosage.

I take 3000 mgs. a day of keppra. Mine are 500 mg. tablets and I take 2 @breakfast, 2@lunch, and 2@bedtime.

[Endless]

I agree. Everybody is different on different doses.

Or, maybe it's the Keppra dose, maybe not. Sometimes it isn't the dose of Keppra at all, but sometimes whatever different over-the-counter meds you happen to be taking at the time. It also matters how fast you ramp up on each different dosage.

An example is what happened to me on Topamax. It first it made me really dopey and tired. Then at a higher dose all of the sudden I was extremely hyper and felt like I had a giant bumblebee buzzing in my head 24x7. It was awful. I assumed it was the Topamax at a higher dose. My doc told me it was anxiety and to see a shrink. Turned out it was a combo of Topamax and some sudafed I had just started taking. When I stopped the Sudafed, the giant bumblebee dissapeard. I'll NEVER take sudafed and anti-epileptic drug's again! And I told the doc the error of his ways. ( I hate it when they blame their lack of knowlege on our psychological balance instead of finding the real problem)

So some detective work might be worth it, just in case. What else has changed?

[epileric]

I do agree with Loopy Lou that everyone is different so it's best to become familiar with how hubby reacts & watch to see if the side-effects lessen and whether he can cope/function with them rather than see if it coincides with other peoples reactions.

[ddr1166]

Endless - the only thing I can think of that's changed is that he's 100% off caffeine. He also took a Unisom one night to help him sleep, so maybe that's it.

[Westwind]

The Keppra side effects for me have been pretty stable through dosage changes, except when they uppped me to 4000MG/day. That was awful. Bumped back to 3000MG/day after that. But I've had to learn to tolerate and compensate for the effects as best I can.

[travel bug]

Hey ddr,

I was just wondering if there was a particular reason the neurologist has your husband take his Keppra all in one dose once a day? It seems like I read or heard somewhere that Keppra doesn't stay in the system very long and that is why it is very important to take it at regular intervals. For a while, I got out of the habit of taking my Keppra regularly, just one pill sometime in the morning and the other sometime in the evening. I had several breakthrough simple partial motor seizures. They were very mild compared to earlier ones when I was on dilantin and my levels had fallen. But when I went back to taking my Keppra exactly twelve hours apart, the little breakthroughs became fewer and finally (knock wood) have gone away. It might be a coincidence, but ...

So I have a question to others on Keppra: Do you take it more than once a day? and if yes, do you take it regularly...in other words, do you set an alarm to make sure you take it on schedule?

BTW, I'm only on 1500mg/day and I'm extremely sleepy all the time. Bless the hearts of all of you who have to take more. I don't know how you do it.

[maureen]

Hi, I'm a pharmacy technician that takes Keppra. When I first started it I was on 500mg twice daily. Twice daily is the usual way of taking it. After a couple of seizures, it gradually increased to 1500mg twice daily. I absolutely hated it!!!! I was so tired and bitchy. I suggested to my neurologist that maybe taking it 1000mg three times a day would work better for me. He didn't really like the idea; statistically people don't follow the regime properly when it increases to more than twice daily. I said, don't worry, you don't know me very well. Since then, May of 2009, I've had 1 seizure, a breakthrough and also now take 10mg Clobazam at bedtime. Today, I am 8 months and 12 days seizure free...but who's counting.

[ddr1166]

Hi Travel Bug - I should have said he's actually on Keppra XR - when you noted the time taken, I realized there is a regular Keppra and an extended release. He's on the extended release tablets. I think that makes a difference? Since consistency is key to taking these meds, the neurologist suggested the XR so we're more consistent (sometimes I can't remember things already and I'm not the one with seizures! eek).

Anyhow - to answer your other question, yes, I think it's also key that he takes his meds at the exact same time every day. The neurologist pointed this out. So he has a reminder on his phone for 7:00 a.m. every single day, rain or shine, vacation or not. I don't think it matters what time of day you take it as long as it's consistent. It works for us because he's always home at that time or we're leaving for work.

[ddr1166]

Hi Maureen - I think you're on the regular Keppra, right? Not the XR? I'm wondering if it makes a difference. It's definitely something we'll look into if he has another breakthrough (meaning, maybe it's better to have the regular Keppra more often than the XR once/day). I guess that's also an individual thing because to remember to take it 3 times/day....we wouldn't be very good at that. Thanks so much for the input. D

[BarryIreland]

In my experience yes. Keppra, even the slightest change can affect you. I feel until the right dosage is found it can drive me absolutely beserk, see my post on crazy;im not looking for attention just trying to relate my experience on the drug.This medicine may help people but in my experience it has been an absolutely chaotic medicine. I dont know what advice to be giving because even writing this now, after taking keppra this morning my behaviour has been altered.

[ddr1166]

Hi BarryIreland - thanks for your post. In my (very limited) knowledge about Keppra, I think the idea prevailing neurologist's offices is that across the board it has less side effects than some of the others - especially the older ones. Plus, it's processed through the kidneys (although I'm not sure that's much better than the liver, frankly, except you have two of them), and it doesn't "seem" to interact with other meds as much...in theory. I'm learning after reading this site for a few weeks now that many are able to control seizures in more natural ways - yet, in some cases, the meds still have to be taken. Good luck in your case - this is a great site and keep us posted. Cheers, D in Dallas

[travel bug]

Hi Travel Bug - I should have said he's actually on Keppra XR - when you noted the time taken, I realized there is a regular Keppra and an extended release. He's on the extended release tablets. I think that makes a difference? Since consistency is key to taking these meds, the neurologist suggested the XR so we're more consistent (sometimes I can't remember things already and I'm not the one with seizures! eek).

OHHHHH!!! That makes a difference! I was kind of worried that maybe your hubby's doctor didn't know what he was doing. I forgot that extended release was even an option. Well I'm relieved I just really hope your husband feels better soon!

[henhouse]

I take one Keppra XR 500 before bed, at the same time I take 1,000 Depakote and a sleeping pill. I take 750 Depakote mid-morning. I have been seizure free for over 1 1/2 year; before that it was basically every 4 - 6 weeks for 10 years. My doctor feels the Depakote is doing the "heavy-lifting", my wife disagrees. The main side effect is a lack of physical coordination, so no tennis. My Depakote has been decreased 250 on each of my last two visits (about six months apart).
Fatigue is another side effect. The meds would "shorten" my day. Over a month ago a friend told me about Shaklee "Memory Optimizer" a "Brain Power Supplement". He gave me a month supply. The ingredients include Bacopa and Vinpocetine (look them up!). I have been taking a capsule when I take my other medications. I am a lawyer, and I think I have been much more productive using the Shaklee product. It does cost over $40 per month. Ouch!
I will be 55 in September and have had epilepsy for almost 12 years. I went off my medication on my own 5 years ago and enjoyed a wonderful month of coordination before I had a seizure and awoke after a 3 1/2 day coma. Very good about taking my medicine on time after that event!

[tripletdad]

I went from 500mg all the way to 3000mg and stayed at 3000 for about 9 months then went back down to 2000mg. I definitely noticed a difference, but especially when my dr reduced my dosage to 2000mg. I found at 2000mg I had less nightmares, my mood swings were less dramatic, my migraines were far less frequent and I was less drowsy. My myoclonic seizures were a bit more frequent but I can live with the trade off.

[Topcat]

I was on regular Keppra now I am on Keppra ER. With the regular Keppra the dose at night put me right to sleep. With the Keppra ER I have trouble getting to sleep. With the regular Keppra I felt lousy right after I took it with the ER I feel lousy all the time. I think I will asked my neurologist to switch me back to the regular Keppra at least it's cheaper.

[huskymom]

I take 2,500 mgs of Keppra along with 200mgs of Vimpat and 1,000mgs of Carbatrol. I take all of them together, split half in the morning at 9 and the other half at 9 in the evening. Seems to work out okay. Still have the occasional seizure, but otherwise can cope with a full day of work.

[Nc123]

My 20 year old son is on Keppra 3000 a day, 1500 every 12 hours. 2 seizures in the past few months. We don't think he has epilepsy now but that he is experiencing sleep apnea induced hypoxemia. It might explain why the Keppra isn't working too. He started off at 2000 a day and increased to 3000 after a seizure but just had another the other day. We are going to wean him off but are unsure how much at a time. The only real side effect he has is grouchiness. I didn't notice any difference in this between the 2000 and 3000 mg dosages. We get yelled at quite often but he has no signs of depression which we have been watching intently for. By the way, he is on the regular, not XR.

[neilB]

Keppra and Nightmares? Hmmmm. I feel like I step into the twilight zone everynight when I go to sleep. I'm on 2500mg (1,000 morning and 1500 at night). The nightmares are getting more and more bizarre as each day goes by.