Lowering Keppra dose...fingers crossed!

[travel bug]

I finally talked to my GP about lowering my Keppra from 1500 mg/day to 1000. Well, I say talked with, he doesn't know much about epilepsy and Keppra, but I was just sooo tired of being tired all the time, I figured I'd risk it. Now I'm stepping dose down and finishing off my 750's, taking one 750 and one 500 a day for next couple of weeks. I've been at 1250 mg/day for 5 days now and so far, so good; I even feel like I have a bit more energy already. :woot: Here's hoping!!!

 

[momof3boys]

I hope things turn out good for you! Im weaning off of Keppra now. I wont be completely off til mid july, but Im eager to see how things will turn out!

 

[Nakamova]

Thats great! let us know how it goes, and remember, it never hurts to taper extra slowly...

 

[momof3boys]

Thats great! let us know how it goes, and remember, it never hurts to taper extra slowly...

:agree:

My dr is taking me down 250mgs each week. So it will take 12 weeks for me to get fully off the Keppra. He is wanting to make sure I come off slowly rather than quickly.

 

[bazpa]

keppra

Where you just tired, or did you have other symptoms. Dr increased my dose to 1000 mg twice a day. I am so agitated, and cannot concentrate. The whole thing just seems to be getting worse. I am new to taking seizure meds-it's been 6 months. All of the 4 I have tried have given me rashes and hives, so I have to take benedryl to combat that issue. I am so tired of all of this. I am going into the hospital for 5 days to try to figure out what part of my brain is the issue, since meds are not working well now. Why must I stay in the hospital? They can monitor your heart from home-why not brain? I have insurance, but I know I will still end up with a huge bill. I am not sure I need to do this.

 

[travel bug]

Hey momof3boys,

Thanks for the well wishes. You were on 3000 mg/day??? Good golly, I don’t know how you’ve been able to stand it!!! I saw on another post that you are changing over to Lamactil, I really hope it works for you!!!

Hey Nakamova,

Thank you, and thanks for the advice. It was actually my pharmacist who suggested taking one each a day while I still have some of the 750’s left. (My pharmacist knows me and my situation much better than my GP does.) I have enough 750’s left for about 2 weeks if I take one of them a day. I hope that will be enough of a step-down and enough time for my body to get used to a lower dose.

Hey bazpa, (nice to meet you)

Sleepiness is my main problem though I do have trouble concentrating as well, but agitation is a common side-effect of Keppra. Have you talked to your doctor about the rashes and taking Benadryl? Rashes can indicate serious problems with some anti-seizure meds, though I don’t know if that’s the case with Keppra. I’ve taken Benadryl a few times for other allergies, but because I’ve read here that it can interfere with some meds, I only take half a dose. So please be careful!

I only had to do one of the short EEG’s because the cause of my seizures was known to be a tumor. The EEG was just a confirmation. Someone else will likely have a better explanation as to why you need to be in the hospital, but my understanding is that you are usually taken off your meds for the full EEG and there is some chance of having a statis seizure (one that lasts longer than 10 minutes which could be serious if you didn’t get medical help.) So you need to be where you can be supervised and get immediate help if needed.

I know it seems overwhelming now, but if they can identify the specific area of the brain involved the better chance they have to treat your seizures without all the crappy side-effects. Hang in there!

Also bazpa, since you bring up some serious issues, I'd suggest a new thread(s) of your own with specific title(s) so that you can get more input. Good luck!

 

[huskymom]

good luck to those tapering off your meds. I have been using Keppra 2,500 mgs a day (along with a couple of other things) for quite awhile. I have not had any problems with mood changes or rage, but I wonder if it is because I also take 10mgs of prozac. Do you think that would help you as well? onder:

 

[charlotte]

Do you mind if I ask - did you start on a high dose of keppra or was it increased over time?
I started low but have needed to increase a few times... and looks like I'll be going up again soon... not really sure why but it has been suggested that because of my size (I'm tall, but not heavy... and the weight keeps dropping). In terms of coping, I accepted the risk of seizures a while ago... and yes, sometimes all you can do is laugh... but I still struggle with side effects on a daily basis.

 

[huskymom]

I started off slow and worked my way up. I also take Carbatrol 1,000 mgs and the prozac. Even though I am not seizure free, I can accept them. After all, I don't really have much of a choice

 

[momof3boys]

Where you just tired, or did you have other symptoms. Dr increased my dose to 1000 mg twice a day. I am so agitated, and cannot concentrate. The whole thing just seems to be getting worse. I am new to taking seizure meds-it's been 6 months. All of the 4 I have tried have given me rashes and hives, so I have to take benedryl to combat that issue. I am so tired of all of this. I am going into the hospital for 5 days to try to figure out what part of my brain is the issue, since meds are not working well now. Why must I stay in the hospital? They can monitor your heart from home-why not brain? I have insurance, but I know I will still end up with a huge bill. I am not sure I need to do this.

I had my first VEEG done in March. The hopsital I went to offered Financial Assistance. I was there for 4 days, March 7th through March 11th, I was released that morning.

I was approved for 100% financial assitance through March of 2012. My total bill came to almost $19,000. I didnt have to pay a dime. If you call up the billing dept of the place youre going to have the VEEG, ask them if they have financial assitance. They just sent me forms to fill out and asked for a copy of our w-2s.

 

[momof3boys]

good luck to those tapering off your meds. I have been using Keppra 2,500 mgs a day (along with a couple of other things) for quite awhile. I have not had any problems with mood changes or rage, but I wonder if it is because I also take 10mgs of prozac. Do you think that would help you as well? onder:

Ive been on Keppra for over 11 years, and with t hat I was taking Carbatrol. The way my dr put it to me was that the Carbatrol was helping with the kepprage and controling the mood swings and such. When he took me off cold turkey and never put me back on the Carbatrol, a few weeks after, was when I started to see the mood swings come about, and then they turned into angry, crying spells. So, thats why he is weaning me off the Keppra. The prozac could very well be helping that. I have an appointment scheduled for May 9th to get some anxiety medication for the next couple of months while I get off the Keppra to help with the mood swings. Im going to see if the medication helps.

 

[momof3boys]

Hey momof3boys,

Thanks for the well wishes. You were on 3000 mg/day??? Good golly, I don’t know how you’ve been able to stand it!!! I saw on another post that you are changing over to Lamactil, I really hope it works for you!!!

Yeap, Ive been on 3000mgs of Keppra since I was first put on the Keppra when I was 18 yrs old. But I was also on Carbatrol too, which helped with alot of the symptoms. I remember the tiredness though. The first few months were the hardest. I had to get use to it, but it eventually went away. When the dr tried to increase my dose in September 2010 to 4000mgs a day, I about died! I had such bad headaches, I was so tired all the time! I had no engery and then i had break through seizures. I went back to his partner who I have been seeing since, and he put me back to the 3000mgs of Keppra, only changed it to Keppra XR. It took away all my headaches I was having, plus the seizures stopped!

Yeah, Im on week #3 of the Lamictal, So far so good... 2 more weeks and I will be on my full dose.

 

[kostareyna]

I finally talked to my GP about lowering my Keppra from 1500 mg/day to 1000. Well, I say talked with, he doesn't know much about epilepsy and Keppra, but I was just sooo tired of being tired all the time, I figured I'd risk it. Now I'm stepping dose down and finishing off my 750's, taking one 750 and one 500 a day for next couple of weeks. I've been at 1250 mg/day for 5 days now and so far, so good; I even feel like I have a bit more energy already. :woot: Here's hoping!!!

Even if the siezures will return at 1000mg try Keppra Xr,i think you would be able to make it work with same dosage if its released much slower and will have more stable levels in your blood than normal keppra.

P.S=Hope the seizures won't return of course

 

[travel bug]

Even if the siezures will return at 1000mg try Keppra Xr,i think you would be able to make it work with same dosage if its released much slower and will have more stable levels in your blood than normal keppra.

P.S=Hope the seizures won't return of course

Thanks, kostareyna

I still have about another week with one 750 and one 500 before going to two 500's. I'll just have to remember to be extra careful when I start on 1000 mgs. I hope it works too, but it's good to know that there's another option besides going back up in dose if it doesn't work.

 

[kostareyna]

Thanks, kostareyna

I still have about another week with one 750 and one 500 before going to two 500's. I'll just have to remember to be extra careful when I start on 1000 mgs. I hope it works too, but it's good to know that there's another option besides going back up in dose if it doesn't work.

Btw how excatly do you decrease you dosage..250mg every 2 weeks?

 

[travel bug]

I was at 1500 mg/day - two 750's/day - and had my doctor give a prescription for 500 mg pills while I still had about two and a half weeks worth of 750's left. It was actually my pharmacist who suggested that so I could take 1250 mg/day for a couple weeks before going to 1000/day. My general practioner, unfortunaely, doesn't know much about seizures, but he at least listens to my concerns. I hope I'm going about this slowly enough

 

[loveslight57]

Anyone having increased seizure activity when Levitracetam dose is increased or the manufacturer changes. I'm not referring to going from brand to generic, but from one generic to another

 

[Nakamova]

Hey ll57, I think a number of CWE members have found that batches of generics from different manufacturers can vary quite a bit in strength. you might be interested in this thread: http://www.coping-with-epilepsy.com/forums/f23/switching-generics-17861/

 

[loveslight57]

thank you. I'll check it out. Im weaning from the leviteracetam and going to my old stand by brand dilantin