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Kathyalison

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Joined: 01 Apr 2004
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Keppra Posted: 04-01-04 09:32am


Hi! My name's kathy. I'm 28 and am in a lot of conflict. I was diagnosed with epilepsy when I was 7, having small absence. When I was 19 tonic seizures started and a while later I was put on lamictal (lamotrigine). The drug has worked fairly well, and 2 years ago my husband and I had a very healthy baby girl! However, lately i've had some set backs and my neurologist wants to add or change my meds to keppra. I've done a lot of research and am really scared of this drug, espacially since my husband and I have been trying for another baby. There seem to be so many side effects! Because of this i'm not sure when we'll be able to try again, but I am so worried about being on this drug in general as well as being pregnant on it. Does anyone have any advise or stories they could share with me. I'm absolutely aching for answers and information!

katiedee

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Keppra Posted: 04-01-04 12:41pm


Sorry to hear things aren't going so well for you. I don't have any knowledge or experience with keppra being taken during pregnancy, so I would suggest doing what i've done myself in the past. I would call the manufacturer directly and ask your questions. Then, I would talk to your ob/gyn about keppra and if they're not familiar with the drug, they can certainly get any information they need on it and then determine if it's safe to use during pregnancy or not. Also, I have a lot of faith in pharmacists, so I would also check with one to look up the drug literature and see what studies have been done in pregnant women. Last of all, I would contact the fda, something which i've done as well with any drug questions, and ask for information. Now personally, I have an 11 yr. Old son who's taken keppra and trileptal for two years now. Prior to that, he was tried on just about all the other aeds available, but many had horrible side effects. I worried the most about lamictal because of the fatal rash you can get if you should be allergic to it. The neuro who gave it to him had a patient in the burn unit at the time for her reaction. I know it has to be worked up very slowly to watch for any signs of "the rash", but I was a nervous wreck over it. He's had the best seizure control with the least side effects on his combination of keppra and trileptal. But everyone is so different when it comes to seizure medications and what works for him I know won't always work for someone else. Quite frankly, I haven't heard or read about bad side effects with keppra, at least none worse than any other med he's been on, especially lamictal. He's never had to have bloodwork to check his liver while on keppra either, which is a plus for us. With the other medications, he always had to go in for liver checks. I know it's hard to know what to do, especially if you're thinking about getting pregnant. Just keep doing your homework, pray about it, and you'll make the right decision.

Kathyalison

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Thanks For the Input Posted: 04-01-04 20:48pm


Thanks for your suppory! You have no idea how encouraging it was to get your message. Like you say, it's interesting how people react so differently with medications. Lamictal has been successful for me in that I consider my seizures to be fairly well controlled. They seem to pop up once in every 18 months or so. They're simply the tonic stage, lasting about 30 seconds. My body completly stiffens up, my head turns to the right, I guess I make a gasping sound while I breathe, and then I jolt for the 30 seconds. I do go unconcious though and need recovery time after. I can always feel an aura hours before it comes on and when it's done i'm exhausted, despite it being more mild than a lot of other kinds. They often come in pairs for me, one several hours after the first. My most recent episode was 2 and a half weeks ago. My husband, daughter and I went out west to visit friends. The time change, lack of sleep and messed up meals played havoc with my system and I ended up having a seizure in the car on the way from edmonton to fort st. John b.C. (a 7 hour drive!!) of course I wasn't driving, but in many ways it was devastating because I hadn't had one since october 2002! On the plus side, there was only 1 this time! But, now, I feel like i'm back to square 1, no driving anymore and now looking at med changes. I was surprised to read about the side effects you spoke of with lamictal. As I said before it has given me no problems. When I first started it in 1997 I had headaches as my body adjusted, but that was it. And it was marvellous during my pregnancy! Mt daughter is bright and perfectly happy! While on this med I was able to nurse too. Unfortunately it didn't last long, I ended up getting mastetis and had to stop. So now, when we have another, i'm dying to try to breast feed again. However, the literature i've read has said that you can't nurse while on keppra. Like you said, i'll look into it a little more by contacting the company. That was a really good idea. My aunt is a pharmasist so she's looking into it for me too. It's just scarey not knowing what to expect!

cogentparadigm

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Keppra Posted: 04-17-04 22:20pm


I can only tell you about the experience i've had with keppra and thats from the male perspective. On a lower dosage which is what i'm on at the moment, 1000mg twice. There is for me, only a minimal side effects, which appear only for a couple of hours after taking the actual tablets. This is usually a low (not mentally but physically). For me, I have found the higher the dosage the longer the tiredness lasts. However, when I go to see my specialist there are people I have met there who have had wonderful results from keppra, with no side effects whatsoever. I hope this helps

Kathyalison

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Thanks Posted: 04-17-04 23:25pm


Hey, thanks for your input. I took my first tablet of keppra last night (500mg) and am completely on guard today looking for any effects. I do feel tired but I wonder also if that's just the normal tiredness I feel at the end of the week. I noticed my feet felt really heavy this morning when I walked and that was kind of wierd. I've read that trouble walking is a side effect too, but again it's hard not to wonder if i'm just imagining this. I'm certain i'm not and the feeling has seemed to pass, but as mentioned before it's scarey when there are things messing with your brain! My doctor intends to put me on 2000mg a day which i'm told is a moderate dose. They've also told me that rarely is fatigue a side effect of keppra. I'm sure hoping!! I'm sure that a person must feel somewhat tired when something new is added to your system, but it's the not knowing what will happen that is hard! I have petit mal epilepsy which for me is mainly rapid eye blinking especially when i'm tired, so there is often a fair bit more of it in the mornings than the rest of the day. Once I get going and take my meds it settles down. This morning I noticed that my eyes didn't flutter at all and when I was scratching my eye my husband noticed that they weren't fluttering then, which he tells me they normally do. I did feel that my eye muscles felt more controlled this morning and there was none of the usual flutter movement, so that's a plus! I'll be adding 500mg more each week for the next 3 weeks while remaining on my full dose of lamictal, so hopefully all will be fine. Thanks again!

cogentparadigm

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Keppra Posted: 04-18-04 02:11am


I glad to hear that keppra seems to be working for you. The only other thing that I can think of about keppra that I have been told by friend I have in medicine,that apparently is not a widely know fact, is that keppra is a med that is absorbed and processed very quickly by the body, approx 8 hours, and what is not absorbed comes out in urine, and my make it darken. Not the most pleasant of things, but it made me worry to start with 'cos no body told me.

redrose

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Absence Seizures Posted: 04-18-04 11:44am


Hi kathyallison, i noticed that you said you were originally diagnosed with absence seizures, so I would love to ask a few questions. I just took my 12 year old daughter to our family dr 3 days ago and was referred to a neurologist with suspected absence seizures. We were getting quite frustrated with her constant "daydreaming" and "spacing out" when we were talking to her...But she also started doing it when she was talking. She'll often be telling me a story about something that happened at school, and she'll be very animated and enthusiastic, and midsentence she'll just space out and stare off into space for 20-30 seconds. She's usually unresponsive because we'll say her name and try to get her attention, and then she just kind of comes out of it and usually says "huh?" because everyone's staring at her and calling her name. I started suspecting that there's something more going on there than just daydreaming. Its one thing to daydream when your mom's telling you to do something or lecturing you, but its quite another to "daydream" in the middle of your own story! Anyway, at first I wasn't too concerned because everything I read said that kids usually outgrow it around puberty, but she's gone through puberty and it seems to be getting worse rather than better, in both frequency and the length of each occurrence. So i've been searching around on-line and i'm seeing several places that say in many cases they can escalate to tonic-clonic seizures, so i'm definitely concerned. Anyway, I was wondering if you could tell us a little of what to expect as far as testing and getting a diagnosis and then what? Her dr ordered a bunch of bloodwork, the orders say for tsh, a cbc w/auto diff, and a comp metabolic panel...So my understanding is that she's checking for thyroid function, infection and auto-immune diseases, and changes in metobolic products? We had her blood drawn the other day and we have an appointment for may 13th with the neurologist. Can you give me an idea of what to expect from here if this is in fact absence seizures? I would really appreciate your insight! Thanks!

Kathyalison

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I Hope This Helps Posted: 04-20-04 04:35am


Hi. Well, i'm by no means an expert but what you're describing does sound like some sort of seizure. What you've described isn't what i've experienced but there are so many variations. For me absence seizures are flutters of my eyes. I can still participate in conversation, driving etc., it doesn't interfere with the goings on. However, at age 19 things changed. That was when I had my first tonic-clonic (grand mal) seizure. The fluttering still continued and still does, but things have become more complicated. When I was diagnosed my parents were told that I would either outgrow my absence seizures or they would probably worsen/develop into somethingelse. From what they tell me everyone assumed I would just outgrow it. But as I say things changed. What you describe sounds similar to the sort of aura I have before a bigger seizure. In the hours before I have a seizure (which for me is becoming unconcious, my head goes to the right, and my body stifens and jolts for 30 seconds or so) I feel like things are sort of going in slow motion. I hear people talk to me but have a hard time comprehending and responding. Sometimes I will be mid-sentence and have to ask what I was talking about. I'm not with it and it's obvious. From what i've read, what i'm describing is actually other sorts of small seizures, not just an "aura" so to speak, but again i'm not an expert. Like your daughter, when I was diagnosed I had a bunch of blood work done and further testing which I expect is what might be recommended next for her. To confirm diagnoses in me I had an eeg test. This is where you are taken into a small quiet examination room and your head is attatched to about 30 wires that will measure brain activity. The test takes about half an hour. When i've had it done they've asked me to have my eyes open for a while, then stare at a blinking light, then breathe deeply, close them and so on. It's not painful or difficult. A little scarey at first probably, especially since you do not know whay the outcome will be. They might also do an mri, which also isn't painful at all. I'm sure your mind must be racing with questions, anxiety and the need to know as much as you can. I know, it's really hard for all of you. I hope my response has provided you with some information. If you have any further questions please post them and i'll reply. Or if you want to e-mail privately i'm willing to do that too. You will all get through this. It will be a tough road at times i'm sure, but you will all make it and at some point i'm sure you're daughter will be back to herself. It may take a lot of time and some meds, but life will be right again. Good luck, keep me posted if you can! Kathy

micki

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Keppra Posted: 04-20-04 09:34am


Hi, my name is micki. I had a full on tonic-clonic seizure 10 days ago, my second that i'm aware of although I think i've had more but was unaware of them. I am on neurontin 1800mg. A day...It obviously hasn't been effective, and now on lamictal. I'm having terrible side effects, like headaches, nausea, and dizziness whenever I lean over. I've just happened upon this website and am so anxious to communicate with others. I don't know about keppra, but I see my neurologist on thursday and will ask him. I have so many questions and fears about this disorder. I thought my first one was just a once in a lifetime oddity. Now I know differently. Thanks for letting me vent. Congratulations on your baby girl. My daughter is pregnant with her first child..Due in june. I wish you well.

Kathyalison

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Hang In There Posted: 04-20-04 20:06pm


Hi, don't worry, although I know it's probably impossible. Infact, many have been saying that to me lately, however, things will turn around for you and life will get back to normal. It may take a while and a variety of meds but it will happen for you. I have to follow my own advice. It's hard to cope sometimes, I am well aware. But hang in there, you'll get through it! Kathy

redrose

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Posted: 04-21-04 13:23pm


Kathy, thanks so much for your response! I'll print the page and have my daughter read it. I think she'll feel better knowing what to expect from the eeg test should one be ordered. As I said, our appointment with the neurologist is may 13th. I'll let you know how it goes! Thanks so much for your warm and supportive encouragement! This is definitely a scary time! Tanya

bubble1

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Posted: 04-28-04 03:24am


Hello i am seeing an epilepsy nurse at the moment for pre-conception counselling because I would like to become pregnant. I am on epilim so i've been told I need to come of this due to increased risk of spina bififda. I was going to be put on keppra but when I read about it I told the epilepsy nurse that I did not want to go on it. First of all there seemed to be too many bad side effects but of most concern to me was that I found the following report on the internet which I have copied and pasted into this message for you to read. It is from the food and drug administration: in the united states, the food and drug administration (fda) assigns each medication to a pregnancy category according to whether it has been proven to be harmful in pregnancy. Keppra is listed in pregnancy category c. This indicates that caution is advised, but the benefits of the medicine may outweigh the potential risks. Studies in animals have shown some harm to the baby, but there haven't been any good studies of results in women. Talk to your doctor or another health professional if you are pregnant or plan to become pregnant. We don't yet have enough information to be able to estimate the risk of various types of birth defects that might occur if keppra is taken during pregnancy. We also don't know enough to compare the risk with keppra to the risk with other seizure medicines. All women who are capable of becoming pregnant should take at least 0.4 mg (400 mcg) of the vitamin called folic acid every day because it helps to prevent one type of birth defect. (the most well-known of these is spina bifida, in which the spinal cord is not completely enclosed.) women at high risk, such as those with a history of this kind of defect in a previous pregnancy, should take 4000 mcg (4 mg) daily, beginning before they become pregnant. How much keppra is passed through breast milk is not known for certain, but the way the body uses it suggests that probably a large portion does enter the milk. If you want to breastfeed your baby, check with your doctor about what seizure medicine would be best for you. When I read this and saw that keppra hadn't been thouroughly tested in human pregnancies I decided against keppra. I am being slowly transferred from epilim to topamax. Hope this helps.

Kathyalison

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Thanks Posted: 04-28-04 04:02am


Hi, thanks for the info. I have read a lot of the same and mentioned it to my neurologist. Of course before prescribing keppra to me my doctor and his assistant were well aware of my desire to become pregnant again and still felt this was a good move given my situation. I was really leary at first and still have some concerns naturally, however, I was on lamictal with my last pregnancy and all of the info. About that drug read the same as it does for keppra. Where lamictal is still considered a relatively new drug there isn't a lot of study information available yet regarding pregnancy and that drug. Happily, lamictal worked out great for both my baby and me! I have been taking 2mg a day of folic acid since I got married (6 years ago) and increased it to 4mg during my first trimester, then back down to 2mg further into my pregnancy. I saw a neonatologist while I was pregnant because of being high risk of course and my mind was put to great ease 13 weeks into the pregnancy when I found out that my baby was completely healthy. I'm really hoping that i'll have the same experience with keppra. I read about all of the side effects associated with this drug and literally was terrified of it! However, i've started on it and feel really good! Everything's different for everyone. That's for sure! Good luck to you in your pregnancy planning! I would love to hear more from you as you begin this exciting journey! Have you been told how long you have to wait before trying to conceive? I've been told to wait several months to allow the drug time to settle and my body to adjust. Again, good luck!!! And thanks for the info. All input and responses are always appreciated! Kathy

RyGuy

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I Love Keppra Posted: 05-06-04 06:04am


One of the things I like about keppra is that is one of the only epilepsy drugs that notes weight loss as a potential side effect! If you can find the right dosage, keppra might do wonders for you, just like any other drug out there. If you're considering pregnancy and things worked on the last set you were on, maybe you should leave it alone till after you're done breastfeeding and then move over to keppra. Neuros love keppra because of the relative lack of side effects compard to other seizure meds. Remember, with drugs, that they have to disclose everything ever found during their studies. You'll feel a "change" when you first start taking it. Then, you'll adjust. I noticed things "get normal" about 3 days after I started taking it. Good luck to you!

Angela67

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Posted: 05-22-04 09:04am


I actually gained weight with the keppra and have had a lot of serious mood changes. I am in the process of trying to get to a doc to change the meds now.

connie elaine

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Keppra Posted: 05-22-04 10:59am


I currently take 2500 mg daily and I have experienced some side effects. I have not ,in two years, been able to say that I have had a day without feeling any kind of side effects. I have taken naproxen and depakote I can say that keppra has been better for me than the others. I used to take med about 13 yrs ago but I dont know exactly what it was. I lose my balance when standing still or walking, consentration, my eyes flutter, I see what looks like "germ" looking things, I forget everything even if I have or have not taken my keppra, I keep my meds in a weekly pill container right by the phone so I usually dont forget ,but you know, sometimes I do, I sometimes drool or slober when I talk, and I have, since my last seizure about a month ago been wetting myself quite abit. When I have a seizure in my sleep I usually will spit up...But I havent seen any of that lately. My boss has put me on leave without pay and the depression is kinda hard to deal with as well. It really has taken me awhile to even type this up because of the lack of consentration and mis types. If you have experienced any of these symptoms let me know please. Connie

RyGuy

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Um Yeah... Posted: 05-25-04 02:20am


Holy crap connie... 2500 mg of keppra is right up there at the high end of what is prescribably and it will space out even an astronaut! Neurologists are a strange breed of people, I would suggest finding a new one.

Keppra