Decreasing Keppra on my own?

[RunningGirl85]

Sooo... After having a lot of days of crying spells, and wanting to throw things (I only threw a little thing of dental floss, by the way), I've been thinking I really should decrease my Keppra. My neurologist had said I could decrease if I want when I called his office in freaking tears during one of my episodes, and I don't have to take anything he gives me, though obviously he recommends I take it or he wouldn't give it to me. Right now I have 750 mg tablets of Keppra XR, and for the past two days I've only take two pills instead of three (so 1500 mg instead of 2250). I wish I could decrease the dosage slower, but seeing as I only have 750 mg tablets... that's kinda difficult to do. I've also INCREASED my Lamictal lately.

I'm just wondering if anyone else has done this? Do you think it's a good idea? I'm kind of scared to see the results, but then again, I also don't like these mood swings. I also don't like the idea of switching to another medication that has other side effects (feeling stoned), and he DOES want me to be on two medications, since just one doesn't seem to help me much with my partial seizures, which is what he's trying to stop so they don't have the chance to generalize.

Anyway, what have others done in this situation? Just curious... What was the result if you DID decrease a medication without "supervision" (though of course I'd tell the neurologist, and he did originally okay that I take less).

 

[Janus]

Hi, I commend your courage to take matters into your own hands (with communication with the doc.) One thing that helped me to help them see my point is tell them this;
Prof. Raymond, First to honor your impressive credentials.I see what you are saying; however, as a life-long full time artist with a degree in Philosophy, I tend to differ. Having spent years working with docs and "mind experts" that have been thoroughly noculated with status-quo thought, conventional and anachronistic trying to BOX the mind into the most predictable, quantifiable terms of the said box when most do not even have an adult vocabulary. Being accused of 'wayward thought' has no weight in the 21st century by the sycophantic conditioners. Living in a modern age with an inveterate tendency to overlook the obvious means freedom lies in blatant disregard for cultural conformism and the stigmas attached. The idea independent of the principle of SUFFICIENT reason, let alone statistical evidence. re; Schopenhauer. The complete overlook of Art and beauty as autochthonous qualities in the human mind. The confines of linear thought have, perhaps, brought on the eminent decay of consciousness as we know it to be.

 

[RunningGirl85]

I like that thought process! I find myself taking it on more and more the older I get. Perhaps because I get prescribed so much stuff, and I've found that using my OWN remedies has helped more than using the prescribed ones, WITHOUT the side effects. Of course, with epilepsy, I don't want to move TOO far from what the doctor prescribes, as doing nothing led to my last T/C seizure (and at that point I was still eating healthy, taking vitamins, etc), but I don't mind changing things up. I'm also glad he's willing to listen to my perspective instead of stubbornly insisting that I follow his instructions.

 

[reidflys]

All the best on your marathon in November.
My doctor tried to get me off of Keppra I was at 2000 mg
and feeling very angry. I wanted to get off it really bad and dropped down to
1000mg in about a week. I had an awful seizure, like not just a bad one but one of my worst. Now I'm at 1500 mg of Keppra and feeling really functional.
I was definitely at fault for trying to go down to fast on the Keppra, I know the feeling of wanting to get off it really bad!

 

[RunningGirl85]

Thank you! Mine would be a decrease of 750 but I also have 1000 mg tablets and 500 mg tablets (neither XR, whereas my 750 mgs is XR). I'm wondering if it would be wise to use the 500 regular keppra then split the 500s to 250 and decrease that way (adding them in the evening perhaps )... I don't want any extra seizures but I'm also afraid suddenly decreasing by 750 mg. Ugh.... or maybe I should just stay on 2250 mg.

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[momof3boys]

Im taking Keppra XR now, and have it in 500mg tablets. Have you tried taking a vitamin b-12 for the kepprage that keppra can cause? I wasnt aware of the vitamin b-12 helping that with the Keppra, til I was switched from taking regular keppra to Keppra XR. But I did notice a difference in my moods when I started taking the Vitamin b-12.

 

[RunningGirl85]

Ya I'm on B12 and B6 on top of a B vitamin complex. Plus I'm on antidepressants. Sigh.. maybe I should just leave it as is for now

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[Nakamova]

Are the tablets the kind that you can cut in half? (Like with razor blade) That's what I did when I tapered down a bit on my Lamictal dose, so that I could go as slow as possible, in as tiny an increment as possible.

 

[momof3boys]

Are the tablets the kind that you can cut in half? (Like with razor blade) That's what I did when I tapered down a bit on my Lamictal dose, so that I could go as slow as possible, in as tiny an increment as possible.

I know the 750mg tablets dont have the line in the middle to cut in half. Last year when I was taking the Keppra XR (750mg tablets) , and my neuro wanted to try to wean me off the Keppra, I had to be changed back to the regular Keppra that had the line in the middle, to cut them in half. I was given the 500mg tablets for that.

 

[momof3boys]

Ya I'm on B12 and B6 on top of a B vitamin complex. Plus I'm on antidepressants. Sigh.. maybe I should just leave it as is for now

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For now, if it was me, I would probably leave things alone. At least until you get ahold of your dr to see what they say to do. I wouldnt want to see you get into a nasty situation and have seizures come about! Hang in there!

 

[MuayThaiFighter]

I never had good many good experiences taking med changes into my own hands. If you do, make sure you do it very slowly and go back to your original dose if you notice your mentally state changing. The rage I got on Keppra wasn't very aware to me, until I no longer took it. It is very possible your moods and depression could decrease with Keppra once the lamictal goes up more. I hope your doing ok and everything works out with the meds.

 

[RunningGirl85]

Thanks for the replies. The XR version (750 mg) I can't cut, but I have thd regular pills I'm addition to the XR. I would probably take down the XR two pills and add one 500 mg a day (leaving me at 2000 a day), then decrease by 250 down to 1750 and then eventually be down to just two XR tablets. My biggest thing is would it make any sense to mix the XR with regular? I would probably take the regular at night to "supplement" and keep the XR in the morning. Overall I'd only be decreasing by 750 mg but if might be.risky to figure out on my own...

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[momof3boys]

Well, ive never mixed the regular with the xr before. I started taking regular keppra at the age of 17, then was switched to the xr at age 29. Then about five months after being on the xr, was when my neuro said he wanted to try to wean me off of keppra, and in order to do that, I had be put back to the regular keppra, since the xr I was taking, was the 750mg tablets that wasnt allowed to cut in half. The bad thing for me was that the regular keppra made me have terriable headaches. I was then switched back to the keppra xr after we found out the lamictal he wanted to try me on, wasnt good for me. I had an allergic reaction to it. So I was put back to my full dose of keppra xr at 3000mgs. When I was being weaned off the keppra, my neuro was doing it very slowly. I was going down 250mgs a week, and cutting the 500mg tablets in half while doing so. That only lasted two weeks though.

 

[acpollard2010]

Running girl I just went through the experience of the drs orders wise of going off keppra cause I was having same exact problems my advice caution I didi it there way and still suffered imagine doing it pretty much on ur own.but I was also on regular keppra

 

[AngelwithDentedHalo]

When my Neurologist started me on Keppra, he himself prescribed the dosage, starting me out at 250 MG once a day, then twice a day, all for a week each and then increased it to 3, 250 MG twice a day once I was built up but I was taking for JUST that, 42 pills a week so he changed it toi 1 750MG pills, one twice daily. He said you have to build it up and if I ever got to go off it, I'd have to do it gradually but said it's not a good idea to do it on my own. I trust him, he's been great and knows what I need. I doubt I can go off it but if I did, he'd prescribe gradual decreases in the meds until I no longer took it.

 

[RunningGirl85]

Yeah mixing the regular with XR is the only thing that really concerns me, since they release differently. If I was able to decrease the dosage of the XR by 250 mg a week, then I wouldn't be concerned at all, but the only way for me to lower the dose of the XR is by 750 mg at a time, and I DON'T want to chance that.

When I first started on Keppra, I was on the regular version, and I started at 750 mg twice a day. It was the only seizure medication I was taking at the time. I think after that I went up to 1750 a day (can't completely remember), and then 2000 a day, then 2250 when I went on XR. I would definitely LIKE to decrease by 250 a week, but that's impossible with JUST the XR tablets I know I could do it with my REGULAR tablets I have left over (they kept changing my tablets around, so I have a bunch of extras).

 

[KarenB]

We went down to the pharmacy and bought a pill cutter. We have to cut lots of Jon's tabs anyway, because they come in much larger sizes than are appropriate for a child. For instance, our doc prescribed 250 Keppra in AM and 250 PM, but they come in 500 mg tabs. So, if it's a tablet, should be no problem (unless time release?? not sure about those, because maybe the coating has something to do with it).

Our doc gave us permission to reduce Jon from 5 mg Diazepam to 4, and those results were encouraging, so we gradually reduced him down to 3.5, where he is now (without getting the doc's permission). We informed doc of change at appt. last Mon, and he kind of raised his eyebrows, but didn't scold, and then we got him to prescribe the diazepam in 2 different forms -- one is a 5 mg tab, and the other is a 2 mg tab, so if you cut both of those in half, you get 3.5, which is the current dose. And, then, if we wean more, it's easier to do with various size pills.

 

[RunningGirl85]

Yea. My 750 mg tabs are time released which is my problem and hence why I'd have to mix those with my non-time relase if I want to lower the dose slowly.

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[RunningGirl85]

Okay, so I am feeling a bit "funny" this morning (this would be day three of less Keppra), so I will no longer conduct my "experiment" until I talk to my neurologist. I get my driving privileges back in the next week, I have a trip to Germany in just over two weeks, and a marathon in a month... I have decided it's not worth it to decrease on my own.

 

[momof3boys]

Okay, so I am feeling a bit "funny" this morning (this would be day three of less Keppra), so I will no longer conduct my "experiment" until I talk to my neurologist. I get my driving privileges back in the next week, I have a trip to Germany in just over two weeks, and a marathon in a month... I have decided it's not worth it to decrease on my own.

I think thats a good idea. I would be contacting your dr about the dosage rather than doing it on your own. You're right... it's just not worth it! Hang in there!

Oh yeah, if you do feel different, try to write it all down. As much information as you can provide your dr, the better off you will be!