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High Keppra Dose

I saw my neuro monday and she really thinks that my dosage of Keppra should be increased from 3000mg to 4000mg. I noticed that this is a Very high dose and just wanted to see if anyone is on this high of a dosage and if so any differences in taking a dose SOOO high? My neuro said that ppl take as much as 5000 mg but everything i've seen thus far says that 3000 mg is the max out, so if anyone can help me out i'd be soo glad?!?!

~Cass

Comments

Re: High Keppra Dose

I have been on keppra for abot 10 years and I take 750mg 3 mornig and night which is the max dosage. which means 4500 mg per day.

It works fines and It has reduced my seizures and the length it time in the seizures and getting back to normal

My neuro have also added Vimpat at 300 mg a day which is also bringthe number if seixured down. Our hope is that th combination can get me seixure free.

Good luck

Re: High Keppra Dose

Hi there Cass,
First thing is do you take any other meds besides keppra? I take 2000mg Keppra, 2000mg Epilim and 20mg Clobazam a day so if you add them up its a heck of a lot but then again I have never felt better. Another thing to remember is tolerance varies wildly from person to person so 1000mg could do for one person what the 3000mg is already doing for you. Having said all of that when I initially started taking my dosage i was told i was on the max UK daily dosage of keppra, then again it was still very sparingly used in the UK at the time so as time has gone on the max dose has risen as the drug companies, specialists etc. have had time to see its effect better.

Andy

Re: Re: High Keppra Dose

Andy thanx for the response and the question, education major-LOVE QUESTIONS! The answer is that I take only Keppra as monotherapy (i suspect that maybe my neuro is submitting my case as study in the FDA approval of K as a solo AED). I had sz for a year or more before being diagnosed and treated. So all in all I've been on Keppra for almost two years (DEC 2004). But since being medicated my sz are different and less frequent, but progressivly worse. I started out on 1000 mg and was on that until around April 2005, then was increased to 2000 mg. November 2006 I was placed on an incresed 3000mg, which i've been on since. The longest I've gone without a sz since 2004 is 4 months, which is drastically better than the up to 5 a day i was having before. But I seem to be building such a volatile tolerance (as you said) to Keppra and my neuro is asking questions like 'have I been blacking out' and 'have I been falling down with the sz'. I have SPE with a weird focal point-on the cusp of several brain areas. I really like Keppra, but if I would benefit from an increased dosage OK but if I should react better to a cocktail w/ say lamictal or something....I really am concerned that maybe my research or understanding is off kilter----sorry hope i did not lose ya in all that!?!? I've been at 2000 like you and am kinda immune to it now, but 4000 mg sounds just outraegeuos, b/c even the drug company (whom my medication is through) won't fill my script for the 4000 only 3000, so i would (or will) have to pay the $168 out of pocket for the other 1000 mgs. I just want to know what this high dosage entails, like side effects and other potentials dangers?

Sunshine and Daisies,
~Cass
"There is no exquisite beauty without some strangeness in the proportion" -Edgar Allen Poe

Re: Re: Re: High Keppra Dose

I found your post interesting.

I am also on Keppra as a monotherapy, and I don't know if my case is being followed by anyone other than my neurologist. He seems to think very highly of Keppra.

I am currently on 1000mg and it is making me VERY tired. I have also been a little grouchier than normal, but there could be any number of factors influencing that.

I'm being upped to 1500mg at the end of the month, and I am a little nervous about that. Like you, my seizures have gotten different and I have had more anxiety attacks since I started on the higher dose. I am extremely jumpy and nervous. I am following my daily reactions very closely.

Re: High Keppra Dose

I know this is an old discussion, but figured id go ahead and share my experience anyways. A few years ago I decided to switch from Depakote to keppra because My husband and I were getting close to ready to want to try and have a baby and I've been told that keppra is the safest anti-seizure medicine for pregnancy.During the switch I had multiple break through partial seizures as 2 grand mals (first ones in about 6 years). My neurologist finally got my seizures under control with 3,500mg/day. Just this past May I found outI was pregnant. I have had a pretty rough pregnancy with lots of nausea, vomiting, and dehydration. Ia was so sick that I lost 23lbs within the trimester,but thankfully no seizures! A few weeks ago, around 22 weeks, I started feeling on the verge of having a partial seizure and a few days later I had several break through partials. (I have simple motor seizures in my right leg and occasionally they have spread to a grand mal seizure). My neurologist checked my keppra levels and discovered they were about 1/2 of what they had been (when my seizures are under control, my keppra levels are around 50). She was hesitant to increase the keppra dose due to the fact that I was pregnant and because I was already on a high dose. She did go ahead and increase it to 4,000mg/day. After the increase, my keppra levels increased slightly to 28 (50 is my normal keppra level). I was still feeling miserable and was having a difficult time just walking as I felt like I could have a seizure at anytime. In addition to that, I get bad anxiety due to my seizures as I never know if a partial will lead to a grand mal (which do to past experience, I have to come be terrified of). My neurologist was uncomfortable increasing my dosage any higher, so she referred me to an epitologist. The epilotologist seemed to be an answer to my prayers. He assured me it is the amount of keppra in my blood that matters and not the amount I'm physically taking. He immediately wanted to get my keppra levels back up to around 50. I am currently now taking 6,000mg/day and my levels are up to 43. He said many pregnant women end up needing to pretty much double their doses during pregnancy due to their bodies not absorbing it as much. He also assured me that the baby only gets a fraction of the amount that is in my bloodstream, not the amount I'm physically taking. I'm feeling much better now that I no longer feel on the verge of having a seizure, however, since my medicine increase I have started experiencing what I believe are nocturnal seizures followed by "Todd's paralysis" in my right arm. I had experienced this paralysis in my arm back when I first started taking keppra, but did not know what it was. After some research, I found what is called"Todd's paralysis" which is a temporary paralysis that can occur after a seizure. I've started experiencing this type of paralysis multiple times a night since my medicine increase (I wake up when the paralysis sets in). Yesterday was the first time who woke up and experienced a simple motor seizure in my arm immediately followed by the paralysis. (This paralysis is sometimes a total paralysis in my entire right arm that usually goes back to normal within a minute, but occasionally it is a partial paralysis whet I can move my arm and hand, but I have no coordination and cannot point, hold my hand flat, hold/grip anything (essentially my entire right arm is useless until it goes back to normal). It sometimes can take up to 6 hrs for it to go back to normal (thus why I have been typing this entire post with my left hand. Will be anxious to see what my neurologist and epilotologist have to say.

Re: Re: Re: High Keppra Dose

Cass--I began taking Keppra about 2 years ago. I am currently taking 3000 of Keppra along with 2000mg of Depakene. Since they increased the Keppra from 2000 to 3000. I have been having problems like your neuro mentioned. I have blanked out and/or fallen down 5 or 6 times in the last year. I was wondering if it waas the Keppra or what. I am 42 and have had sz my entire life. Before that, the only types of sz I had was I would "space out" for a couple seconds and then get tired.

Re: High Keppra Dose

According to my neuro, 4000mg is the max dose in Europe. Apparently they have been using Keppra for longer in Europe.

He wrote out a plan for how he is going to increase my meds for the next few months. He will increase it by 500mg a month until we hit 4000mg. If it doesn't work, he'll bring it back down and start adding other meds.

I am hoping it works, because I don't relish the idea of taking that much of one med. It's already making me very sleepy.

Re: Re: High Keppra Dose

When I first started taking keppra it was only ever seen as an add on med to the existing ones. I was initially asked to take it as part of a trial but i refused and was given it anyway, this was in May 2003 when it was relatively new in the UK, although through these pages i have become aware of its use in the US as early as 2000, but then again only as an add on. On the information sheet that comes with keppra in the UK it doesn't mention a max dose but does mention that for adults the general dose is between 1000mg and 3000mg a day. The leaflet was only updated in the last 6 months so there is all sorts of new info on it that i have never seen before. Before it would be rare for it to be given to children at all over here but now there are dosage guidelines for age 4 upwards. A lot of new possible side effects have been added to the list as well, ones that i had only come across before from reading posts here, including psychiatric disorders, anorexia and amnesia, which is ironic because my memory has improved massively. Obviously the drug companies are getting a lot of feedback from doctors via patients because there are new ones added every time the leaflet is updated. I've got to admit that your neuro's plan to increase you slowly up to 4000mg does seem excessive, almost as if its been done for the sake of it. I know you would probably not be keen on taking more than one type of med but keppra can work very well in conjunction with other meds especially as the dose is usually a lot smaller. If you are taking a massive amount of keppra and its just ending up making you feel very tired all the time then you end up feeling as if you are no further forward. I would be interested to know what the US information leaflet says as mine is not the same one used in the US just Europe. I know keppra has been around for a bit but its use does seem much more widespread in the US than in the UK where it is often still introduced very slowly and as an add on. I looked on the UK E site and from the evidence there very few people take it by itself apart from newly diagnosed people.

Andy, thanx so much for the

Andy,
thanx so much for the comment. I take 3000 mg a day (1500 x 2) and actually haven't had ANY side effects other than sleeplessness and very mild depression (both of which are treated with the same drug, trazodone)---I haven't been tired with K since I was first put on it nearly 2 years ago. I honestly wouldn't care as much if my doc gave me a cocktail, I just want to know if this is common place or if I am a special case. LOL, honestly i think that i'm right up there with the rest of the world in wanting a drug to just miracluouysly (sp?) get rid of ALL OF IT , but lol alas this is not so.

Sunshine and Daisies,
~Cass
"There is no exquisite beauty without some strangeness in the proportion" -Edgar Allen Poe

Re: Andy, thanx so much for the

Hi Cass,
I'll be honest with you I suffered absolutely no side effects to speak of except the slight ones which i anticipated with switching, adding meds etc (been down that road many times before). The first thing I noticed with keppra was the feeling that my brain had been rewired and switched on again after being turned off by various other meds and combos of meds over the years. I have been szr free since day one of taking keppra, guess i just got lucky, because to all extents we are all very much still lab rats and the docs that treat us do sometimes seem to be as much in the dark as we are, sometimes further in the dark from the experiences i read about. The one thing that concerns me is the fact that new side effects are been 'discovered' and added to the list all the time. When i first started taking it there was no mention of 'suicidal thoughts' as a side effect but its in there now. I know drug companies have to cover their own backs litigation-wise but if a doctor sat someone down and ran through and discussed every possible side effect with the patient they would be out of the door before they got half way down the list. I have read quite a few posts from concerned parents who say keppra has changed their child into someone with almost uncontrollable rage, unrecognisable from the child they once knew. To me that sounds like lab rats at there worst, new wonder drug, lets push it out there as much as possible and wait and see what happens, then leave the patients and their parents or partners to pick up the pieces, not too worry there will be a new wonder drug along soon. Maybe i sound a touch cynical but that's how it seems sometimes. I remember about a year ago there was a full page article in one of the UK daily newspapers about the 'new wonder drug' that was changing the face of epilepsy and bringing joy to millions of sufferers, i had already been taking Keppra for 2 years at this point.
Andy
PS I also love your quote

Re: High Keppra Dose

I am also on Keppra(until another med. recently started builds up in my system) but have not had great success with it. I have been on 2500mg for about 11mos (still having seizures but less in severity and amounts). Recently I was accepted as a patient to a neuro specialist in E, who also does research into meds and Keppra is one that he and others were studying specifically what levels are the max. I also believe he said 3000mg was the top for effectiveness vs side effects. For me he believed that if it was not helping (mono therapy) with my complex partials at 2500mg increasing would not accomplish anything. Also I have had some bad side effects never experienced by me before such as anger, high emotions, and even when I began Keppra some new situations made me claustrophobic. As I was very new to this (seizures began 4yrs ago) I wasn't sure whether it was Keppra or just me. When I saw this Epileptologist his knowledge and understanding amazed me and I would highly recommend finding a specialist it really does make a difference. ~ Rita

Re: Re: High Keppra Dose

Rita,

I'm sorry to hear that. The reason that I am on K as mono. is b/c i'm young and they didn't want to burden me down with all of those drugs if they don't need to. Also i'm sorry that K hasn't been working well for you. That is the main reason that I take it, b/c all in all it has worked like a miracle drug -for me anyway. Hopefully they can work all your 'kinks' out and get you to feeling better!
Sunshine and Daisies,
~Cass
"There is no exquisite beauty without some strangeness in the proportion" -Edgar Allen Poe

Re: Re: Re: High Keppra Dose

Hi Cass,If anything I have learned lately, is how different med's are for each of us. I am really happy for you that Keppra is working. The reason I originally was put on it was also that is has very little side effects and leaves the body without any residual effects. Love your quote and wish you the best, Rita

Re: Re: Re: Re: High Keppra Dose

Wow!! Maybe it's time I see a new doc. I'm on three med's. My Keppra is more than 5000mg a day!!
No wonder I'm so tired.

Re: Re: Re: Re: Re: High Keppra Dose

Wow is right. I have to say reading this has me concerned debtay. On 3 meds, keppra being 5000mg a day. That to me is nuts. My epi told me when he first met me that one of my meds was causing all my trouble and that preferably he wants his patients on only 2 aeds.
Max dose of Keppra? I take 3000mg and after reading all the questions here about what the max is I asked my epi and pharmacist what the max dose is and both said 3000mg.
To everyone on keppra ask your pharmasist and lets compare notes.
debtay I would call doc right away and see if you can be refered to an epiletologist. Be well, hugs n smiles!

Re: High Keppra Dose

I'm on Keppra monotherapy, and have been progressively increasing my dose over the last year to almost 4000 mg/day. I haven't been able to do any imaging or a long term video EEG to localize where my eleptogenic brain region is, but I believe I'm having persistent simple partial psychic seizure activity. I'm not sure how to characterize this because I don't have separate, clear, single seizure "events". Rather, I have cognitive dysfunction and feelings of intoxication at ALL times. They're subtle enough so that I'm very functional, but show a strong increase perimensturally. I feel as though the increased dose of Keppra hasn't helped me, and suspect that there will be a change in therapy after I have some imaging and video EEG done. I feel moderately fatigued, but still manage to workout regularly, and keep up in medical school. The fatigue sucks, but I can't say it's debilitating.

Hope that helps!