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Medical Forum / Diseases and Disorders / Epilepsy / May 2004keppra increaess
Hi, This is my first post. I hope I am not redundant to other's questions but I have read may posts and nothing really touches specifically on what I am feeling lately. A little background: I had my first seizure (grandmal) when I was 21 (5 years ago). It was during my sleep and after MRI and EEG, my neuro. diagnosed me with nocturnal seizure disorder. I took 400mg dilantin twice a day. I was seizure free for almost 3 years on dilantin only. This past summer I began to have seizures again (Only in my sleep). They now are partial complex seizures and granmal. I was then started on lamictal (at 150mg twice a day). I continued to have 3-5 seizures a month from sept 03 to current. I visited my neuro 3 weeks ago. (last seizure was 3/23/04). After a new EEG and MRI I had abnormal spikes during drowsy and REM states. He added Keppra gradualy to a cap of 750 mg twice a day. After 6 days on Keppra had a level done. My level was "Low" and he directed me to increase 250 mg every 5 days to a cap of 1500 twice a day. Initialy I had horrible responses to the Keppra (falling, ataxia, drowsinesss, faling asleep). The side effects gradually disappeared. Last night I increased my Keppra 250 mg as directed and had my first seizure in 30 days and again fell this afternoon. Has anyone heard of or experienced a seizure due to an increase in meds? I am only suspicious because I was seizure free for a month prior to the increase and after increasing I almost immediately had a seizure (appeared to my fiance to be partial onset with granmal and he said it seemed longer than in the past). I am sorry for the long post but I wanted to give details. I appreciate any help you can all give!!!!! Thanks, Amanda > Hi, > This is my first post. I hope I am not redundant to other's questions > but I have read may posts and nothing really touches specifically on > what I am feeling lately. Hi Amanda Welcome to the group and I'm sorry you haven't had a response so far. > A little background: I had my first seizure (grandmal) when I was 21 > (5 years ago). It was during my sleep and after MRI and EEG, my neuro. [quoted text clipped - 7 lines] > I visited my neuro 3 weeks ago. (last seizure was 3/23/04). After a > new EEG and MRI I had abnormal spikes during drowsy and REM states. That's the same as what my EEG showed. > He > added Keppra gradualy to a cap of 750 mg twice a day. After 6 days on [quoted text clipped - 3 lines] > Initialy I had horrible responses to the Keppra (falling, ataxia, > drowsinesss, faling asleep). The side effects gradually disappeared. I tried Keppra some time ago, but it made me have some really weird feelings and it was discontinued (prematurely perhaps). What I've heard other people who are on high dosage like you say is the same. After a period of adjustment, the side effects go away. Are you still also on the Dilantin and the Lamictal? > Last night I increased my Keppra 250 mg as directed and had my first > seizure in 30 days and again fell this afternoon. You may have reached a limit on how much Keppra your system can handle. I've seen mention of that before also. > Has anyone heard of or experienced a seizure due to an increase in > meds? I am only suspicious because I was seizure free for a month > prior to the increase and after increasing I almost immediately had a > seizure (appeared to my fiance to be partial onset with granmal and he > said it seemed longer than in the past). It could have simply been a coincidence. Have you continued on the higher dose of Keppra? > I am sorry for the long post but I wanted to give details. I > appreciate any help you can all give!!!!! > > Thanks, Amanda Hoping this is of some help. Bob Hi, Sorry for the delayed reply... I have been computer-less for a bit. My doc (after a 3rd fall) has begun to decrease my dilantin 100mg a week until I am at none. Along with this he is increasing my Keppra 250mg until I reach 1500 twice a day. I have decided that my most recent seizure was coincidence. My doc has me going for levels next week. I have difficulty adjusting to the increase of Keppra for the first 3 days and then by day 5 I am good... just in time to increase again.. ugh! Thanks for your help Amanda Amanda, I'm not an expert and in fact, also a newbie. What I have learned is that anything that changes the brain chemistry can trigger "events". My husband also had good - then bad results from Dilatin for several years. He's been on Keppra for a month, and just went off of it two day s ago due to sleepiness (he was having 3 hour naps every afternoon) and anger/anxiety. Just last night he had a nocturnal aura (luckily didn't turn into a grand mal) which I suspect is the result of stopping the Keppra. Keppra was likely protecting him very well - but the side effects were not worth it. This whole drug thing is an art, not a science. From what I've read, though...after you've tried 2 drugs (as you and my dh have) and the seizures are still occuring, then your chances diminish (to about 10%) that a new drug will stop the seizures. Not good odds....but someone has to be the 10%, right? My husband is getting tired of not driving/not working - and the whole drug rollercoaster, so we're looking seriously at the surgery route. I hope I've been of some help and that some experts on this board respond to your post. Deb > Amanda, > [quoted text clipped - 8 lines] > of stopping the Keppra. Keppra was likely protecting him very well - > but the side effects were not worth it. May have been worth sticking with it a little while longer. Took me around 8 weeks to get rid of sleepiness/mood swings etc. but worth it in the end. Anxiety decreased as dose was increased - seemed to be getting something akin to "cold turkey" between doses. > This whole drug thing is an art, not a science. From what I've read, > though...after you've tried 2 drugs (as you and my dh have) and the > seizures are still occuring, then your chances diminish (to about 10%) > that a new drug will stop the seizures. Not good odds....but someone > has to be the 10%, right? True, but 10% still better than 0%. Now 12 months & 3 days seizure free. Tried Tegretol, tegretol/lamictal, tegretol/neurontin, tegretol/topomax, tegretol/epilim, & settled on tegretol/keppra. Finally something worked. > My husband is getting tired of not driving/not working - and the whole > drug rollercoaster, so we're looking seriously at the surgery route. Driving licence application went in 2 days ago. I'd have only really considered surgery as a last resort. Mainly used to get complex partials, with a "burst" of them a few weeks apart, so luckily I considered my condition to be more of a nuisance than anything else. I may have felt differently if I'd been having more grand mal seizures, or daily CP's. > I hope I've been of some help and that some experts on this board > respond to your post. > > Deb If there's one piece of advice I could give it'd be this: Don't give up. Good Luck & hope everything works out OK.  SignatureTheOtherMikeK == remove random numbers to email Deb wrote: >This whole drug thing is an art, not a science. >From what I've read, though...after you've tried [quoted text clipped - 3 lines] >stop the seizures. Not good odds....but >someone has to be the 10%, right? I am sorry if this seems like a really stupid question, but is it true that after trying two drugs, you fall to having a 10% chance of any other drug helping? I am taking it is, since I have heard it mentioned here before. This is almost freaking me out since I have already been tried on two medications, neither giving me complete control. The Dilantin level never stays up enough no matter how they adjust it (put it this way, it was doubled in January since 300mg let it fall to a 3.2 and it went to 15, and it is already starting to get lower-I can feel thie symptoms sometimes) and I have reached my maximum dose my body can handle on Keppra. So that is why I am wondering if that is really my chance on any other drug helping. > Deb wrote: > [quoted text clipped - 17 lines] > handle on Keppra. So that is why I am wondering if that is really my > chance on any other drug helping. true, but.... I'm on my 6th drug combination in 11 years & have finally found one that works for me - tegretol/keppra. Don't be afraid of trying something else. There's always hope. SignatureTheOtherMikeK == remove random numbers to email 373 days vertical & counting. > Deb wrote: > [quoted text clipped - 17 lines] > handle on Keppra. So that is why I am wondering if that is really my > chance on any other drug helping. Hi. I've never seen any mention here, or on any of the Ep. or Medications sites where they put a 'Percent' on why Drug B won't work because Drug A doesn't, for seizure control... If you can't buy a Blue Ford, why would that have any bearing on whether you could get a Blue Chev or Volkswagen ?? While there might be some Families of related Medications, where if One of THOSE might not control a seizure type, its Relatives won't either, that doesn't exclude the OTHER Seizure Medication types. And there are new ones being approved every week. I was only able to use Dilantin for less than 15 months with Erratic control. (It's often used first, since it's older and the Research costs are recovered so it's cheaper. Also more research has been done on it because of its age.) For Complex Partial Seizures, we moved on to Tegretol Controlled Release, then later on Lower dose, with a Newer med. added. We reached full control about 1996 (3+ years after onset), and I haven't needed a med. Change (dose or type) since then --> 8 years. *** Did you get a Name for the SEIZURE TYPE you are having (Simple Partial, Complex Partial, etc.) ? That will help Others here respond if it's the same type they've had or had experience with too. G./ Gaross wrote: >Did you get a Name for the SEIZURE TYPE >you are having (Simple Partial, Complex >Partial, etc.) ? I have posted this here numerous time. I have been diagnosed as having GRAND MALS and PETIT MALS/ABSENCE seizures; not a diagnosis, but from assumptions and research of my own, I believe I have SIMPLE PARTIALS sometimes too. Like I've said before, I talk 600mg of Dilantin and 1000mg of Keppra per day. It is split evenly into two doses, one to take in the morning and one at night. > Deb wrote: > [quoted text clipped - 18 lines] > chance on any other drug helping. > If Keppra helps is from person to person but i wish that its helps you Hi Deb, Thanks for writing. I am adjusting to the keppra as well as I can I guess. I am not driving now either but still working (lucky to have near by coworkers). The doc is now decreasing my dilantin 100mg per week until I am not on anymore while he increases keppra until it is capped at 1500mg twice a day. The fatigure and "naps" gradually fade for me but the agitation is staying strong. My fiance calls it SARS (sudden anger response syndrome). I'm hoping someday to be in control with meds.. especially since I want to have kids someday. My doc has proposed surgery however I am not ready to consider that step. Good luck with your husband :) Thanks again Amanda |
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