Medical Forum / Diseases and Disorders / Epilepsy / February 2006
keppra and side effects
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KB - 08 Sep 2005 20:26 GMT I wonder if this has happened to anyone. I just started Keppra a few weeks ago. My right arm feels very week and numb and my right eye is twitching all the time. I saw my Dr. today and my reflexes weren't working. I'm a little worried because I don't want to have a stoke and die in my sleep tonight and leave 4 kids behind. My Dr. called my neuro right away but the neuro wants to keep me on the keppra and do a blood level. That still doesn't tell me if I'm going to die. It feels weird that my right side is so week. Plus the Dr. hit all of my reflex points and they didn't move. Has this happened to anyone? I wonder if it's the meds or if i have a brain clot or something bad. Kris
culprit - 08 Sep 2005 20:32 GMT >I wonder if this has happened to anyone. I just started Keppra a few weeks >ago. My right arm feels very week and numb and my right eye is twitching [quoted text clipped - 6 lines] > Has this happened to anyone? I wonder if it's the meds or if i have a > brain clot or something bad. this is a possible side effect of the med and may go away in 1-4 weeks. you can find more info here:
http://www.rxlist.com/cgi/generic3/keppra_wcp.htm
hope this makes you feel better.
-kelly
G.Ross - 08 Sep 2005 21:23 GMT >I wonder if this has happened to anyone. I just started Keppra a few weeks >ago. My right arm feels very week and numb and my right eye is twitching [quoted text clipped - 7 lines] > brain clot or something bad. > Kris The WebMD website that culprit posted said *not to stop* using it **abruptly without Doctor instructions. That is the same advice on my Tegretol bottle too. I had that briefly (4-5 days) with Tegretol and spoke to my Pharmacist as they have the scripts (I think I wasn't online then also). In my case the problem cleared up in less than 2-3 days. It's likely your body adjusting to the dose level or temporary high or low level of a med. in your blood? I hated the eye twitch thing (Dave probably knows what that's called) -- makes it really crumbie to try read anything (newspaper or to your kids). I even considered seeing if they sold (Pirate style) Eyepatches since so long as I kept the 'bad eye' closed I could focus and read o.k. There's also a medications site at http://efa.org ? but the symptoms described are probably similar to the webmd one, or that you'd get from your Pharmacist. (I found my Pharmacist easier to reach when I had things like that, than waiting for a call back of 1-3 days from my Doctor.) Did you try any unusual food, drink any alcohol, or ??? something you don't usually do in the 12 hours before it started happening? Or did it just start on its own? (Some of my side effects often happened too, when we were changing Dose levels, up or down.) I hope you feel better soon 'matey' :-> Let us know how this develops or clears. It's useful too for others who read the group, and might one day use that Med. or have similar symptoms.
I don't even remember if the 'side' I had mine was opposite to my Seizure site. It seemed to me mine were on the Right side, and my Seizure Focus is also the Right Temporal Lobe. (Usually some symptoms happen on opposite side to where the brain activity is? ) G./
KB - 09 Sep 2005 00:10 GMT This is really just freaking me out the way none of my reflexes work. I can tap my knee all over and it just doesn't make a reflex. The Dr. did my knees and arms over and over and it just didn't work. I'm really annoyed with my Neuro because I called them back to ask if my life is any danger or if I should go to the hospital if I get worse and they never called back. I really hate that. Kris
>>I wonder if this has happened to anyone. I just started Keppra a few weeks >>ago. My right arm feels very week and numb and my right eye is twitching [quoted text clipped - 35 lines] > Focus is also the Right Temporal Lobe. (Usually some symptoms happen on > opposite side to where the brain activity is? ) G./ turbinado - 11 Sep 2005 01:11 GMT Topamax gave me an eyelid twitch that drove me crazy, but I think it was on both sides (one day on one, the next on the other). Luckily, Tegretol has not caused this for me.
> >I wonder if this has happened to anyone. I just started Keppra a few weeks > >ago. My right arm feels very week and numb and my right eye is twitching [quoted text clipped - 34 lines] > also the Right Temporal Lobe. (Usually some symptoms happen on opposite > side to where the brain activity is? ) G./ Alicat - 15 Sep 2005 20:49 GMT > Topamax gave me an eyelid twitch that drove me crazy, but I think it was on > both sides (one day on one, the next on the other). Luckily, Tegretol has > not caused this for me. When I first switched to Topamax (from Tegretol) it gave me a really weird twitchy/tingling sensation in my eyes that nearly drove me mad. I thought I was the only person to ever report it as a side effect. Luckily it wore off as I settled down on the tablets. I also got pins and needles/numbness in my fingers and toes all the time. I put it down to Topamax affecting nerve endings and the eyes being a particularly sensitive area of the body. I am fortunate in that, here in the UK, my GP took me seriously and sent me to an optician to get it checked out anyway.
Tried to use brand names here, but usually refer to generic products. Keppra is not something I'm familiar with - is it possible I know it by a different name?
Regards, Ali
BillX - 16 Sep 2005 19:05 GMT Levetiracetam is drug name for Keppra
Dave ©¿©¬ - 09 Sep 2005 05:48 GMT > I wonder if this has happened to anyone. I just started Keppra a few weeks > ago. My right arm feels very week and numb and my right eye is twitching all [quoted text clipped - 7 lines] > clot or something bad. > Kris Howdy Kris!
The chances of dying are much greater if a person gets themself into a kinipshit-fit by worrying about it! ...even if there's nothing wrong with them!
 Signature Namaste
Dave ©¿© "Ego sum quis Ego sum quod ut est quicumque Ego sum"
http://www.howdydave.com
KB - 09 Sep 2005 14:16 GMT That's good to know. I guess I'm not dropping dead. I did tell my sister she has to move in here if I croak to take care of my kids. She won't take care of my husband though. I had another intense seizure this morning so I'm waiting for the Dr. to call me back and beg him to put me back on Tegretol. I have too much going on in my life, I don't have time to be ill. I had 3 seizures this week. I read that the death rate is higher for epileptics because of the meds. Kris
> Howdy Kris! > > The chances of dying are much greater if a person gets themself into a > kinipshit-fit by worrying about it! > ...even if there's nothing wrong with them! BillX - 09 Sep 2005 17:48 GMT Hi Kris,
I've been taking Keppra for close to 2 years now and the only side effect I've experienced has been anxiety that passed after a couple months on the drug.
What's your current dosage level? Mine's 1000mg per day divided into two doses. I tried moving to 2000/day once and that didn't agree with me.
I'd expect any symptoms from the drug to be bilateral (affecting both sides of body equally). Weekness on just right side sounds like a problem unrelated to the drug. Are you per chance having seizures due to a previous stroke or brain tumor? I've experienced weekness in my right side before but it's due to a tumor in the left side of my brain.
Hope you get things under control. I know first hand how unsettling these med/seizure anomolies can be.
-Bill
KB - 09 Sep 2005 21:00 GMT > Hi Kris, > [quoted text clipped - 16 lines] > > -Bill I'm on I think 500mg right now of Keppra. The Dr. is putting me back on Tegretol. So now I am high as a kite. I worry that it could be a tumor or something. It's weird. The Dr.'s don't seem to be very concerned though. How do you know if you have a tumor? I guess if I'm still feeling this way in a few days as I lower the Keppra, I will call the Dr. back and ask. Kris
BillX - 10 Sep 2005 02:23 GMT Hi Kris,
A CAT or MRI would be required to rule out possibility of tumor or stroke. If you've had either test in past year then tumor is unlikely however depending on age and other risk factors such as smoking, weight, alchohol, hypertention, diabitis, etc. stroke is a possibility.
-Bill
KB - 10 Sep 2005 17:03 GMT I haven't had any brain tests in many years. I refused because I spent a whole weak in the hospital for tests about 7 years ago. The Dr. said it was covered by insurance and in the end it wasn't. Then he said my husband was abusing me so that was why I have symptoms. Then he hit me with a $15,000 bill. Bad experience. So I refused to do any brain tests since then. But they did mention they saw something in my left temporal lobe and it was inconclusive. Is it possible it was the start of a tumor and it's just been growing over the past 7 years? Last month I had 6 seizures in one week. If anything I get one seizure a month and it's a simple Deja Vu. I've been trying new drugs so it was blamed on the meds. I've just tried 3 different meds and now I'm back on Tegretol, the original med I wanted to get off of. I was having so many symptoms on all the new meds. I was sick, dizzy, and having seizures. My family is worried. I don't drink or smoke and I'm only 30. I did have a grandfather that died of a brain stroke at my age. Now that it's the weekend I don't have any Dr.'s around. I feel very dopy today. I'm dizzy and high. I'm very dopy, my Brother is laughing at me because I'm such a spaz. I did start the Tegretol at a higher dose 400mg a day. I am also still coming off of the Keppra. I can use everyone's opinion at this point. I don't want to waste my time with Dr.'s if it's just side effects. But I don't want to ignore my symptoms and leave my 4 kids without a mom. Kris
> Hi Kris, > [quoted text clipped - 4 lines] > > -Bill Ole Kvaal - 10 Sep 2005 17:23 GMT > abusing me so that was why I have symptoms. Then he hit me with a $15,000 > bill. Bad experience. So I refused to do any brain tests since then. But Perhaps it is time for a political change in the States (or wherever most of you live)? At least a call for higher taxes, to take care of your public health system. In Norway, nobody has to pay more than approx $225/year for health care/hospital bills/treatments/doctors (except dentists). Whenever you have paid more than that for one year, you're given free health care the rest of the year, the national insurance taking care of your bills. I'm sometimes shocked by reading about your health bills in this group. Perhaps this is the last thing you want to hear, but I just couldn't help it . . . . .
cheers, ole k
 Signature If a problem can't be solved, there is no use worrying about it If a problem can be solved, there is no need to worry about it.
(Shantideva)
G.Ross - 10 Sep 2005 19:44 GMT >I haven't had any brain tests in many years. *** Not to worry. We're sure it's still there ! :-<
I refused because I spent a
> whole weak in the hospital for tests about 7 years ago. The Dr. said it > was covered by insurance and in the end it wasn't. Then he said my husband [quoted text clipped - 3 lines] > it was inconclusive. Is it possible it was the start of a tumor and it's > just been growing over the past 7 years? ** Some of the tests can see any glitches down to fractions of an inch. If it was a minor malformation or even a teenie blood spot, there's no reason to expect it to grow. I'm sure (?) that even a semi-trained Dr. thought there was something to look for that they would./
Last month I had 6 seizures in one week. If
> anything I get one seizure a month and it's a simple Deja Vu. I've been > trying new drugs so it was blamed on the meds. I've just tried 3 different [quoted text clipped - 4 lines] > Now that it's the weekend I don't have any Dr.'s around. > I feel very dopy today. ** Pass... :-> Actually with several of the meds. (Including Tegretol) when the blood level gets temporarily above the target dose, we can feel dopy, clumsie or a drunken sensation. I'm assuming you're using Tegretol CR? or XR? Most places use those (time released) versions than the older Regular Tegretol now. Do you take that in 2 doses during the day? The Pharmacist might be able to suggest if you might be able to split them up into 3 doses? per day, to spread out the time it's hitting your bloodstream? But that's something I'm not licensed to suggest without a Competent Expert (druggist). If you're home during the day, e.g. you might be able to start with an AM dose, then a Noontime part 2, and keep the night dose the same. It's the Balance in your bloodstream you're aiming for, and if the dizziness doesn't clear in 1-2 weeks that means you're temporarily above ideal levels for a short time, even though it entertains your brother. We can get him a Comic Book (or short-sheet his bed !).
If it doesn't clear in 3-5 days at the current dose level, then you could call the Dr. or speak to the Pharmacist. It can take that long for us to adjust to a new dose level. They might also start to reduce the Keppra a bit if it persists as the 2 meds. might conflict with each other. (I haven't used Keppra so don't know how it reacts with other pills. Perhaps others here who use it can comment. )
In case you didn't see an Olde post a few years ago, avoid Grapefruit and its Juices while you use Tegretol. Other juices are OK as it works best with milk, food or juice. One of the acids in G.fruit interferes with how Tegretol gets absorbed. (In case you didn't see that, or the Pharmacy doesn't include that with your prescription --mine does now in Canada since I took a printout I got off efa? site years ago to show them.) /
I'm dizzy and high. I'm very dopy, my Brother is
> laughing at me because I'm such a spaz. I did start the Tegretol at a > higher dose 400mg a day. I am also still coming off of the Keppra. **G- My Dr. started me on lower dose 100mg each AM and night, then upped the dose by half a tablet (100mg) either AM or night each week until I got to target. (At that time it was 400mg AM and 400 at night. But your 2 pills are also interacting, and that's something a Dr. or Pharmacist could comment on better. Likely as you reduce the Keppra, when they think you have enough Tegretol in your system, that sensation should clear. ) /
> I can use everyone's opinion at this point. I don't want to waste my time > with Dr.'s if it's just side effects. But I don't want to ignore my > symptoms and leave my 4 kids without a mom. > Kris *** They're only going to try get away from Mom when they're Teenagers. Don't worry about that now, wait until you get Olde... G./
>> Hi Kris, >> A CAT or MRI would be required to rule out possibility of tumor or >> stroke. If you've had either test in past year then tumor is unlikely >> however depending on age and other risk factors such as smoking, >> weight, alchohol, hypertention, diabitis, etc. stroke is a possibility. >> -Bill KB - 10 Sep 2005 22:36 GMT Thanks. I am slowly getting my reflexes back so that makes me feel better. I lowered the Keppra already. I wonder if it was the Keppra that was making me have those crazy symptoms. I'm getting the feeling back in my right side also and the eye twitch on that side is stopping. I still feel like I'm going to have a seizure. I get like that after I've had a few seizures though. If I didn't have spell check you would see how dopy I am. I started on the 200 mg XR because that's what I had left over in my cabinet. It's cheaper for me to just use those. I have to get them in a 90 day supply and I can't wait to order them. Hopefully I will feel better next week and I can start driving again. I have too much to do. I like your little brain joke. Cute. Kris
>>I haven't had any brain tests in many years. > *** Not to worry. We're sure it's still there ! :-< [quoted text clipped - 76 lines] >>> weight, alchohol, hypertention, diabitis, etc. stroke is a possibility. >>> -Bill E.B. - 16 Sep 2005 23:32 GMT I take 3500 mg of Keppra a day, with also 300 mg of Lamictal. I am a lifetime epileptic, growing out of one type of seizure to another since I was 11. Now I am 41.
3000 mg is the maximum dose recommended of Keppra, but I'm a big guy (6'5" 250 lbs.)
Lamictal and Keppra are described by my Neuro. as "the dynamite combination," and is the only thing that has had me under control to an acceptable level.
For SPs, I take 2 mg of Lorazepam every 12 hours as needed. I have had the twitching time to time again and it drives me nuts.
I have been on Keppra for nearly 4 years and it was originally intended to be used as a supplement to another anticonvulsant. It works best that way from what I'm told.
I've seen the same neuro. at Vanderbilit University (who heads seizure research) for 11 years. He found a theory working w/ geneticists that it is a deformed chromosome on my mother's side that some kinfolk have. His research has shown this to be true in 2 other families. He just went to Thanksgiving get-togethers and drew blood off of everybody.
By the way, he is still looking for more families, we were his first, and I was the worst (heh)
Let me know if this helps or anything I can answer more specifically.
E.B.
BillX - 26 Sep 2005 16:22 GMT Hi EB
I just increased my dose of Keppra from 1000 to 2000mg daily. Hopefully that'll make a difference.
Have you been at 3500mg/day for a long time or has it been a gradual increase over years? My concern is that the drug may become less effective over years requiring ever increasing dosage.
Thanks, Bill
E.B. - 28 Sep 2005 18:39 GMT > Hi EB > [quoted text clipped - 6 lines] > > Thanks, Bill Hey Bill,
I was put on Lamictal and it stopped the big ones, but made the SPs worse. Lamictal also gives you the shakes to where I can't even drink something with my left hand. I was then put on Keppra and the Lamictal was scaled back to an acceptable level because of the side effects (like insomnia). I have been gradally increasing in the dosage of Keppra starting at about 1500mg daily (if my memory is correct) about 4 years ago. After ea. visit to the neuro. every 6 mos. he would increase it slightly sometimes, but now at 3500mg daily, it is the only time my simple partials have been under control to an acceptable level. In other words, I don't think its effectiveness ever decreased, just that it took a while to find the right dosage. Now Tegretol I took for 15 years and then gradually, it did absolutely nothing for me.
Hope it Helps,
E.B.
BillX - 29 Sep 2005 22:26 GMT Hi EB,
I'm on day four at 2000mg and noticing slight headache and drowsiness. Did you experience any of that when you went to higher doses of Keppra and for how long?
Thanks, Bill
E.B. - 30 Sep 2005 02:36 GMT Bill,
I was suffering from the side effects from higher dosages of Lamictal at the time, that my head shook, practically my whole body, and it was embarrassing because everybody would see it right away and half of them would ask me what was wrong. So I really couldn't distinguish what Keppra was doing at the time, Lamictal being such a problem. But I cannot do without the Lamictal at now 600mg a day (I for some dumb reason mentioned somewhere on this forum 300mg) I have mentioned before that my neuro. (head of seizure research at Vanderbilt University-here I am bragging) calls the two medications "the dynamite combination," also mentioning Keppra was originally meant to be a supplement to another prime medication.
E.B.
BillX - 30 Sep 2005 15:53 GMT EB,
Wow, that Lamictal sounds like powerful stuff. Haven't ever experienced any side effects near as severe as what you decribed.
My neuro agrees that Keppra is a secondary medication which is why I'm still taking Dilantin as primary. I may try switching the Dilantin over to Tegratol to see what happens.
Bill
E.B. - 06 Oct 2005 04:17 GMT Bill,
Dilantin was the first seizure med I took, and I started on Tegretol a few weeks later. I was gradually weened off Dilantin and the Tegretol worked better. This was in the late summer and then the fall of 1982, though, when I was 18. I have had seizure problems since age 11. My mother took Dilantin since I was born in 1964. She had her first Grand mal along with having me. She recently quit taking Dilantin a few months ago, and is taking no meds and is seizure-free at the age of 65.
E.B.
BillX - 07 Oct 2005 17:43 GMT EB,
I'm taking 200mg of Dilantin twice daily. Is it the same deal with Tegretol? What about blood tests and liver problems with Tegretol compared to Dilantin? Any food interactions with Tegretol? I have to avoid foods with calcium when taking Dilantin. Did you have to come completely off Dilantin before you could start the Tegretol?
Thanks, Bill
G.Ross - 07 Oct 2005 19:03 GMT > EB, > > I'm taking 200mg of Dilantin twice daily. Is it the same deal with > Tegretol? It will probably be similar with Tegretol -- likely a CR or XR (Time released) version, but the mgs. (as you'd expect) aren't directly comparable between Dilantin and Tegretol. It seemed to me when I switched, about 1994, that we started on half a solid tablet Tegretol each AM and night for about a week or two (so 100mg mine), *then we started to slowly remove the Dilantin. I think the Dilantin is more forgiving as you reduce the dose to zero. Once you reach the target dose of the Tegretol, you should *stay there. Prompt withdrawal or stopping of the med. can produce seizures that can be worse than what you are controlling. (I use a 7-day pill case so I don't take more than prescribed, nor miss doses by just using the pill bottle and my Memory. ) /
What about blood tests and liver problems with Tegretol
> compared to Dilantin? *** I think I had blood tests as the dose increased as with the Dilantin, but after about 6? weeks, I've not had another test since about 1995. I added a second pill about that time, and reduced my night dose of Tegretol slowly to 0, but didn't do any bloodwork during the switchover./
Any food interactions with Tegretol? *** NO Grapefruit with Tegretol -- one of the acids messes with absorption rate. Other citrus juices are ok. In fact all the Tegretols should be taken with Juice, Milk or Food. (I think that is same as Dilantin anyway). As with Dilantin, care also with upset stomach remedies etc. Show any you consider to the Pharmacist who fills your Med. Prescriptions. I've never needed any. Care with alcohol should be used. Extra alcohol produces stronger effects than someone not using the med. (one site called it a 'non-linear footprint' ). It can mess up working of the Tegretol and in my opinion is not worth the risk, vs. benefits if Tegretol works as well for you as it does for me. /
I have to
> avoid foods with calcium when taking Dilantin. Did you have to come > completely off Dilantin before you could start the Tegretol? ** I thought I had used Calcium pills while on Dilantin. Tegretol writeup from my Pharmacy and on efa.org pill site? said to tell Doctors and Dentists I'm using it, and I can use Milk, Food or Juice with the Tegretol dose. . (My Dentist told me that Tegretol can rob calcium in some people, so potential bone damage shows up first in Tooth problems. He changed my Checkup rate from each 6 months to each 4. I haven't had any noticeable problems while using Tegretol over the last 10? years. ) G. //
> Thanks, Bill BillX - 09 Oct 2005 00:56 GMT After further research looks like I misled myself to think calcium interfered with Dilantin. Rather it is calcium salts such as those found in antacids that interfere. Also read Dilantin depletes Vitiman D so taking extra Vitiman D with calcium is advised. Most of the calcium supplements fall into the calcium salt category and therefore need to be taken at least 2 hours before or after the Dilantin.
Sofia - 12 Oct 2005 23:12 GMT > After further research looks like I misled myself to think calcium > interfered with Dilantin. Your thread sort of reminded me about how both my GP, and neurologist, were stumped at how my sodium level was so low until several medical tests were later undertaken.
These tests finally discovered that the reason that the sodium was being "sucked up" from my blood in such large amounts, was because a medicine inside my Tegretol was absorbing it. My Tegretol was immediately lowered, and Keppra was added to it.
I doubt if anybody will ever be free from the side effects of medication, as the drugs seem to work differently for each individual person, and each individual type of epilepsy they have. I do know though, that the entrance of Keppra, and lessening of Tegretol, changing my previous routine, has certainly made me feel a lot better than before!
All the best
Sofie
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wester@laway.net - 03 Feb 2006 00:08 GMT >I wonder if this has happened to anyone. I just started Keppra a few weeks >ago. My right arm feels very week and numb and my right eye is twitching all [quoted text clipped - 7 lines] >clot or something bad. >Kris Keppra doesn't show up through blood levels a la Dilantin, Tegretol, etc.
Sofia - 04 Feb 2006 17:05 GMT On Thu, 02 Feb 2006 19:18:23 -0500, wester wrote:
>>I wonder if this has happened to anyone. I just started Keppra a few weeks >>ago. My right arm feels very week and numb and my right eye is twitching all [quoted text clipped - 4 lines] >>I'm going to die. It feels weird that my right side is so week. Plus the Dr. >>hit all of my reflex points and they didn't move. I doubt it's just the Keppra giving you these side effects, they seem to happen with most meds. One of my friends at school also had epilepsy, and she just used to go completely paralysed on one side for half an hour during her seizures. I didn't want to pry, so I never did ask her what type of seizure it was, and I still don't know, but it's just that it could be the same type you have.
Personally though, I have approx 2-3 tonic-clonic's per month, amongst several other types of smaller ones, but when I was younger, my nervous system always used to go haywire, and like you, one of my eyes used to twitch continuously non-stop - which was a bloody nightmare on buses and tubes, when men used to think I was winking at them!
Although I've only been on Keppra for a couple of years now, I don't get the twitching any more, and I haven't had it for years. It used to be more common when I used some other pretty harmless meds, like Epilim and Phenytoine,
Death from epilepsy is a very, very rare event too, and even if it did occur, the people most at risk of SUDEP (Sudden Unexpected Death from Epilepsy) are mostly very young people under 30 years old, and mainly during nocturnal seizures. If you are worried if you might be one of those at risk though, you could always ask your neuro' for more information on SUDEP, or look for a little more info' on your computer about it.
Take Care
Sofie
 Signature Please visit my deviantART page: http://sofen.deviantart.com/
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