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Medical Forum / Diseases and Disorders / Epilepsy / May 2004wrong medicine?
who has experience with the side effects of keppra? i'm taking it for a while now. and i got the feeling, something's wrong .. can't concentrate, having moments of absolute aggression or depression (althoung i'm really not that kind of person). all the things i once liked are no fun anymore. i even can't make up my mind to do them. i'm on 1000 mg keppra now. i also take 1200 mg carbamazepine. i'm still having seizures, they're only shorter. or is it possible, that the meds show side effects after a while, though the were alright in the first place? the carbamazepine was alright in the beginning? - but maybe it isn't right now? i wanna be able to have some clear thoughts again, my hands to stop trembeling ... but right now it doen't seem possble. the neuros just give more pills - not even knowing where the epilepsy comes from, 'cos EEG and MRT are okay ... somebody has some answers for me? are these normal effects? on the other hand - what is normal. thx yours Raist Below (above your post, is a list of websites I did earlier this month). The Ep. Foundation of America (efa.org site) has a Medications Glossary where you can look up specific medications and get a printout. ( You *should have got one from the Pharmacy filling your Pills to tell you how to use it and what to Watch for as Side Effects.) Someone else can comment on the Keppra. You didn't mention if you had been given a 'name' for your type of seizures. The only one I've used (below) is Tegretol (Carbamazepine) for Complex Partial Seizures. There's a Time released version if that wasn't prescribed first that give more stable blood levels over longer time. It will be called either Tegretol CR (mine) or XR on the Bottle and Prescription.. Don't mix it with Alcohol until you know how you get control (You don't right now, so don't use any Alcohol -- the alcohol messes up the absorption rates of several of the anti ep Drugs (AEDs) .) Also don't use upset stomach remedies without showing them to the Pharmacist who fills your prescriptions to make sure there are NO Conflicts between it and either the Tegretol or the Keppra. Don't use **Grapefruit Juice with Tegretol -- one of the acids conflicts with its absorption. The other citrus juices are o.k., but I prefer food or apple juice with my doses. Don't Skip any Doses as that can cause problems too if the dose is Promptly removed.. I keep a single page 'diary' and record time of Morning and Night time doses, and use a 7 day Pill case to monitor the amount I take each day. I don't know if that latter applies to Keppra, but if it does, the diary page plus pill case can help keep doses at the prescribed level the Dr. set for you. Note that I *never was above 2x 400mg per day of the Time Released version. You're taking 50% more than that (below) PLUS Keppra. Perhaps someone else will post who's using BOTH Concurrently as some of the AEDs have a Synergy effect where the Keppra can ADD TO the Tegretol when combined, and the effects are different **sometimes than taking Either ALONE. That's where I would have hoped your Doctor ** or at least the Pharmacist might have been able to tell you if there were any side effects to watch for that are PILL RELATED and not always because of our seizure types. When I was first on Dilantin, I felt "Guilty" if I had a Seizure since I assumed it was somehow "My Fault" that I couldn't control them better. It Turned out that the Dilantin **for me** was a Crumbie Medication. So don't 'beat yourself up' so long as you're not fully or at least Better Controlled. Some of the Medications need adjusting (up or down) and may take a few months or less to get a Balance that works. It's worth the time and effect to seek that balance, since if you get full control you can stop wondering when (if) that Next Seizure will sneak up on you, and mess up your day. (Someone here used to describe it as her 'evil little sibling' that she had to take with her everywhere she went, and she Never knew when he would misbehave or act up and embarrass her. NOT a bad analogy as I remember the fear I had that "I wonder if today's the Day I'll have a seizure while I'm out...." And Finally I never did. Last ones I had were Dec. 97 and June 98.) G.R./ (I left your olde post at bottom, in case I think of anything else that might be of use to you.) ************* Olde Post I did before listing some of the More Handy Groups wrt. Living with Epilepsy --> ************* I did a couple of posts over last ~3 days where I referred a few people to 'the Idaho First Aid Chart' or 'Idaho Website' without seeing it up on any posts I have right now in my charts. So for anyone who hasn't seen these already --> The General Site that Julie operates for Epilepsy Idaho group is at: http://www.epilepsyidaho.org . The 'First Aid chart' I frequently refer to can be located by entering and wandering about site above, but can be reached direct at http://www.epilepsyidaho.org/seizure.htm . There's a Second topic added about 4? months ago that goes more into First Aid in Water, on Aircraft, etc. It's at http://www.epilepsyidaho.org/seizure2.htm . Also accessible from top site, but more detail on Learning about Epilepsy can be found at http://www.epilepsyidaho/learn.htm . That one has quite a few more links, information on kids newly diagnosed? (I think) and general questions that others might ask, or those newly diagnosed. If there's no link there to a Medications Glossary, the Ep. Foundation of America has one (of several) within http://efa.org . G./ > who has experience with the side effects of keppra? > i'm taking it for a while now. and i got the feeling, something's wrong [quoted text clipped - 6 lines] > the were alright in the first place? > the carbamazepine was alright in the beginning? - but maybe it isn't right now? > i wanna be able to have some clear thoughts again, my hands to stop > trembeling ... but right now it doen't seem possble. [quoted text clipped - 4 lines] > thx > yours Raist thx for your comments. to make a long story a short one: I have have simple partial seizures with and without motoric effects, which may gerneralize secondariliy. there are also absence seizures, drop attacks and grand malls. in the first place there were only them absences. until my first grand mall, which was the indication for some brain damage, well, had a tumor, had it removed, no probs at all. everything was fine. for the next few months. then the seizures and the headaches startet, nobody having an explanation for it. in my head everythings is alright. they added keppra. usually i had night time seizures. since i'm on keppra i don't have them no more. i have drop attacks during the day instead. i started having absences again. well yeah, i have to give the meds a chance, alright. but right at the moment i'm just sick of it all and want my old life back. sorry to bother you, i just wanted to tell someone. i'm quite new to this -- and, somehow, it it seems a little much und suddenly. i don't know, i could live with it, if there was at least some neurological proof for all of this, but - nothing. ecerthing seems perfectly alright. i'm beginning to wonder, if i'm making it all up. but how can you make up a grand mall? yours Raist > thx for your comments. > to make a long story a short one: [quoted text clipped - 4 lines] > mall, which was the indication for some brain damage, well, had a tumor, > had it removed, no probs at all. everything was fine. for the next few months. > then the seizures and the headaches startet, nobody having an explanation > for it. in my head everythings is alright. [quoted text clipped - 9 lines] > suddenly. i don't know, i could live with it, if there was at least some > neurological proof for all of this, but - nothing. ecerthing seems *********************** > perfectly alright. i'm beginning to wonder, if i'm making it all up. but > how can you make up a grand mall? > yours > Raist Hi. You're having seizures now. Your life has changed, and 'the olde life' has changed. Think of it as 'Another Puberty'.... You are taking Keppra (an Anti Ep medication -- I think the dose was 1000mg but I don't use that anyway), and Tegretol (Carbamazepine) at 1200mg per day. That's 3x what I take for Complex Partial type seizure I have (at peak I was at 800mg), so what you have is Not a *minor Seizure event or they wouldn't have you on that Large a dose. BUT Your doses are set for Your level of condition, don't Alter those based on anything I wrote above. They are looking for a level that will control ALL your seizures, and that might take 1, 2 or 3 different pills or dose levels to attain. You didn't say how long you've been using the above 2 pills (less than 4 weeks at current level? or more than e.g. 4 months). Some of the pills (like the Tegretol CR or XR type) need you to take a set dose for e.g. 4-8 weeks at a particular level until you become stable at that level and have the target dose of medication in your blood. It can seem frustrating to still have seizures after trying some pills and some dose levels, but some of this seems to be an Art as well as a Science. The dose is based on the tests they did plus your Body Weight, an estimate of your metabolism (rate you digest food and pills so need new ones to keep levels up), and degree of effects you experience. I don't exactly understand what you mean above at ***s by needing 'proof you have this'. You're taking *2 Anti Epilepsy (Seizure) Medications, you had a Brain tumour that they operated on and removed, but either it or related effects seem to have caused some partial Brain Damage, so you're having seizures. The pills taken as the Dr. recommends, can target the electrical storms and reduce how severe those seizures might be. It's **Natural*** to be Ticked off that you're not the Olde You. But you're not. You probably don't ride a Tricycle any more either. But you do Other things that you couldn't do then. The best thing for now is to try follow the rate of medicines the Dr. recommends, since if they do Bloodwork, they assume you are taking XX Dose so if it's lower in your blood than they expected on tests, they'll Increase your rate taking the pills. You want an Ideal balance, but that minimizes side effects if possible, while giving full szr. control. Many of the szrs. we have can happen at night, but they adjusted your dose and now you don't have those any longer (your note above). The other ones remaining at like that too. You might *Not get 100% control, but many of us do after a Long time (to us) -- measured in Months to years. (Mine took Jan 1993 to ~1996 to control. I had 2 szrs. in Dec. 1996 and June 1997.) Your's might take longer or be harder to get control because of the surgery. That's what the Doctors and Neurologists are trying to get control of now. You said you already had improvements on what you used to have, so they're getting closer to more control for your type of seizure. It's hard to 'be patient' when it's our brain and minds we're tinkering with, but unfortunately some of the Brain Things don't heal as fast as a Broken Arm or other type of surgery. So long as you're seeing improvements and changes in rate of your seizures, things are still going on 'up there'. And some other things that don't improve or come back, we just have to learn how to work around what's not improved as much. (Mine affects memory and learning, so I use notes and tricks to store stuff that my brain won't any longer. Those also took months to years (1980s) to develop, and I didn't even know I was learning them at that time. G./ > sorry to bother you, i just wanted to tell someone. > i'm quite new to this -- and, somehow, it it seems a little much und [quoted text clipped - 5 lines] > yours > Raist Raist, I was diagnosed with epilepsy out of the blue over 4 years ago, they couldn't find a reason for it and the doctors seemed surprised that I needed to know why/how/what/where etc. But especially why. And I had that terrible feeling too, of wanting my life back. I was scared to be alone, scared to walk down a flight of stairs, scared to go to sleep. but bit by bit that all fades and you think, 'if I'm going to have a grand mal, it'll happen with or without me worrying, so I might as well go ahead and live my life and if it happens, it happens.' As I said that was over 4 years ago and luckily they found the right meds for me straight away (800mg tegretol/day) and I haven't had any seizures for over 3 years now. So be brave, keep going and trust that you will be able to live with it. And this group is excellent for support and understanding. Although your family and friends can be supportive and sympathetic, there's nothing like somebody else who's been through the same as you and really understands. Christine christine, well, don't have no family. i don't want to tell my friends. i don't worry about the when. i laugh it away, usually. but it comes back very soon. i could live with the seizures. the meds are changing me. and this is making me afraid. i never had these intense moments of aggression or depression before. i'll find a way to handle this. Raist Don't mean to sound insensitive but what's this about having a tumor removed 3 months ago? What type was it? Are you having periodic MRI to ensure the tumor doesn't regrow in same location or elsewhere? I've been taking Keppra along with Dilantin going on 5 months for seizures induced by a tumor that can not be removed. It took nearly three months to get adjusted to some of the drug's side effects but it has worked well in preventing partial seizures for me. Hope you get your problem under control and that it isn't related to a regrowth of your tumor. Best wishes, Bill > I have have simple partial seizures with and without motoric effects, > which may gerneralize secondariliy. [quoted text clipped - 21 lines] > yours > Raist hey bill, > 3 months ago? What type was it? Are you having periodic >MRI to ensure >the tumor doesn't regrow in same location or elsewhere? right, i didn't make myself clear. must be the foreign language. the tumor was removed six months ago. it was the seizures that suddenly started to occur three months ago. what type ... it called a "cavernom". one of the good ones. the mri didn't show any sign it might have regrown. it is not possible if regrows in another location than the one it was. in fact the mri shows i'm perfectly healthy. so does the eeg, for it doesn't show any abnormal activity. though they may say your tumor cannot be removed, it may go away by itself. anthony burgess, a great british author, had one. exactly this happened to him, it went away by itself - so why not the same with yours you? ;-) you know, it may not look this way, but *usually* i'm quite a positive person :-). you will get along with that tumor. i had mine 23 years - it seems at least - before they even noticed it! it's not so bad to live with, as you say they've got your seizures under control. same will happen with mine. but i'm just really, really pissed at the moment, that's all. that's ok, i think. groove on! yours Raist > hey bill, > [quoted text clipped - 27 lines] > groove on! yours > Raist I think when our Doctor comes back he might have comments on above too. I Think what happens, is it doesn't grow back (as you already said), but some of the circuits might 'rearrange themselves' and in doing that might produce some of the seizures or effects you had to experience. That's only a Non-medical guess of how the parts that were undisturbed during the Surgery might have adjusted as you were Healing. ** Someone else here might know the Steps or a Source, but I remember once seeing onset of an Illness compared to the "Seven steps for Grief?" or something like that. It starts out with Disbelief, then goes to Anger (Why ME? Why'd *I* get this?) , then through Depression, xxx another step here, then acceptance ("It could be worse, it could be terminal, and this isn't..." ) , then moving on (adapting to the new changes or lifestyle, accepting any new limitation that this involves), to "This is ME, take it or leave it, I'm taking it!! " . Some of the stuff you described above and in earlier posts reminded me of those olde steps. I'm sorry I don't remember the missing ones or the Source, but most of the ones that matter are there, above. I had that already in the 1980s from the damage from the Encephalitis, that produced the more severe Memory and learning trouble, then just after the 10 years it took to adapt to that, I had the Temporal Lobe seizure onset. (The Encephalitis that I had, had damaged part of the Right T.Lobe, and my 1993 Neuro said he was surprised that, if seizures were going to happen, that the szrs hadn't started in early 1980s. So I had, basically, 12 years of Possible Seizures, which never happened.) But now the szrs. are controlled, like I described on another thread, about finding the Medications and *mix that works, from 1993 to 95. And the odd setback (1997/8 for about 6 months). Then none since then. But that's where I quoted Lisa (who used to post here) about it now being that Sibling we have tagging along with us, everywhere we go. It becomes part of *who we are, but doesn't become ALL of us. It's just another characteristic like Brown Eyes, Freckles or Curly Hair. We just have to decide if we'd let it make us into Larry, Moe or Curly.... :-< Then, if we can, we move on and adapt to it as best we can. G./ righty right! new day, new luck! :-) you're right, the only thing one can do is live with it, i know. and, in fact, i'm not really bad at it ;-) (okay, you've seen the exceptions). "when our doc comes back" huh? did i miss something? however, i heard about this several steps. know what? it wasn`t "why me?" but "why my brain?". it took me some time for this, though. in the first place (meaning: when they realized i had a tumor) everything went too fast to go through any of these steps - lucky me, i guess. it took only 10 days from my first grand mal, which led up to having the tumor diagnosted, and my leaving the hospital after the surgery. imagine, the tumor was in my laguange center ... which isn't really obvious, is it? (english is not my native language, so don't count them mistakes you may find). they did hell of a good job. before having the seizures, i didn`t exactly realize what they did at all. it was more like a game - right, this may sound macabre, but that's the way it is. having seizures isn't that bad. i hate the other stuff that goes with it. changing your life. no alc. i'm not even allowed to ride my blasted bicycle. (huh - i need some new sports... ) and there is some fear nobody can take from you. i don't mean the question when the next seizure will occur. see, i have some different types of seizures -- so - will it be a partial motoric (they always happen in my right arm) during the next gig? it happened already. a grand mal when i'm talking to my professor? i know the surgery didn't change my cognitive abilties, i had proof of that, i think. but the meds (yeah, that topic again) are changing my brain chemistry and - i'm feeling uncomfortable with it. arrogance by competence - i'm quite proud of what i am doing and i really love it. i'm just afraid sometimes. that they may change one of the best things i think i've got to give. funny, isn't it? that this is my main prob with epilepsy. so, what do i do about it? fight them side effects and get my butt up from the couch and start working on the stuff i used to love so much. not easy. but i think i can do. find a way to get my concentration back. well, who knows, maybe that side effects will fade in another two weeks or so? i've read that in some posts here. :-) and my career ... know what? i'm an academic they can't afford to lose ;-). yours Raist > righty right! new day, new luck! :-) > [quoted text clipped - 47 lines] > > yours Raist Well done Raist, good attitude!! I got to the stage several years ago, where I couldn't even walk out to my mail box, living in constant fear of having another seizure. I was also concerned about what people would think if they saw me have one. But after a while I sat back and thought about it and decided that I wasn't living any more. My epilepsy had taken my life away from me. So I just got up and even though it was difficult at first, I went out into the public and started living again. Guess what. I started having seizures in front of crowds of people. And guess what again. I didn't care. If they were people who I didn't know, then their opinion was of no importance to me...who cares what a stranger thinks of you? And if they were people who I knew, then they knew (or soon realised) that I have epilepsy - and friends don't judge. A few would show pity for me, but I soon made it known that I don't accept pity and they kept it to themselves in future. You have a few wrinkles to iron out, but you'll get sorted and your life will go on. Be like a pair of Nike shoes.....Just Do It. Cheers Raist. Darryl. -- ------------------------------------------- To email, change daryl to darryl in address. ------------------------------------------- > righty right! new day, new luck! :-) > > you're right, the only thing one can do is live with it, i know. and, in > fact, i'm not really bad at it ;-) (okay, you've seen the exceptions). > > "when our doc comes back" huh? did i miss something? *** We had a Doctor from the U.S. who used to drop in from time to time and offer opinions or correct any misconceptions we had while doing some of these posts. With respect to Brain surgery etc. we've only had about 4-6? people over last 3-4 years who've had some forms of that, and I'd be more comfortable having our Doctor (or your's) commenting on recovery rates or projections on when or if certain types of surgery become less an interference in your life, than someone (like me) with NO experience on that. /G. <etc.> but i think i can do. find a way to get my concentration back. > well, who knows, maybe that side effects will fade in another two weeks or > so? i've read that in some posts here. :-) > and my career ... know what? i'm an academic they can't afford to lose > ;-). > yours Raist I snipped this from a web-page "Cavernomas are blood filled clusters of vessels that look like dilated veins (caverns). They characteristically leak blood around themselves. There is a significant chance of becoming seizure free after cavernoma resection." Excessive hemoraging can irritate surrounding tissue thereby inducing seizures. Scarring from surgery can also cause temporary or perminant seizuers. Hopefully your headaches and seizures are from the latter and will susbside over time. > hey bill, > [quoted text clipped - 28 lines] > > Raist I am on two medications, so some of my side effects overlap and hit me double. Some that I know are soley because of Keppra are: memory problems, concentration problems, random dizziness, being "stupid"-not knowing how to do stuff now that I did before, feeling tired even sooner, etc. With Dilantin, problems sleeping, a bit of lightheadiness, dehyration, being nauseated. Hope this all helps somewhat. |
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