Anyone On Lamictal and Keppra - Epilepsy Foundation

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Anyone on Lamictal AND Keppra?

Topic: Medication Issues
Bloodyr
Just come back from seeing my doctor (not 100% happy with how the appointment went, and was basically told despite my last EEG being 13 years ago, which they have lost the results to, it's gonna be hard to get me another one because of restrictions put on referals due to funding! I'm in the UK, incidentally), and I have been put on Keppra as well as my current med, Lamictal. I'm on 150mg Lamictal in the morning, and 100mg at night. And we're starting off the dose of Keppra slowly, obviously.
So...my question is to anyone taking both - how do you find it? What about side effects? Lamictal, for me, contrarily, has increased my appetite, and I'm deathly scared of Keppra adding to this.
Any input would be fab. Thanks guys!
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Comments
Re: Anyone on Lamictal AND Keppra?
Submitted by jclyne00 on Thu, 2008-11-20 12:05 Hi. I've been taking 300mg of Lamictal since I first got diagnosed. For two years they kept getting me to try new medications and at one point I was even referred to see a neurologist about brain surgery! Thankfully, they said it was not appropriate and instead, gave me 2000mg of Keppra, alongside the Lamictal and I've never felt better! It is so much better than all the other medications I tried and I haven't had a seizure since! The only downfall is that my hands shake a bit. I'd rather that than more seizures though! There's no point worrying, if it doesn't work you can always change it. If you spend your time worrying about side-effects, you'll probably talk yourself into thinking that you have them, when you're fine! Anyway, good luck. Hope all's better soon!

Submitted by reba on Thu, 2008-11-20 13:11 Hi I take 3000mg of Keppra a day and 300 mg of Lamictal a day. I havent had any side effects from them, and i have been on them for several years. They controlled my seizures to an extent, but not completly, so i was able to have right temopral lobe surgery done in '07. i'm still on my meds, but i've been seizure free since.
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Becky

Submitted by bputley on Thu, 2013-07-18 10:22 Hi I am 47 years of age and I have had epilepsy since I was 6 months old. My mom told me at birth the ambilical cord was wrapped around my neck and I had a lack of oxygen to the brain and that is what they have predicted caused my seizures. Since then I have been on dilantin, tegretol , carbitrol and Lamotrigine. My neurologist tried me on Trileptol and that didnt work I had many severe warnings I was gonna have a seizure but didnt happen so he changed me to Carbatrol alone. I was on carbatrol for last 10 years and prior to that I was on Dilantin and tegretol. Both medicines seemed to work good it was just the side affects that killed me. Recently carbatrol has raised my triglycerides, blood sugar and platelets up the roof. So soince I have been on lamotrigine 200 mg the past 3 years with carbatrol. My doctor is taking me completely off Carbitrol and raise lamotrigine. for every pill i go off he wants me to add lamotrigine. I have been seizure free for 25 years now. PS. just a side note when I stopped having grandmal seizures I was praying that God would take them away because I had them all my life and I had enough and I was to point of begging and pleading . It was weird because I had went from having seizures during day to having them in my sleep . i had one in sleep then 2 months later another in my sleep and then 6 months and after that they disappeared. I just wanted to bring this up to those who feel the nuerologist has done everything in his power and your still having seizures. There is always a way out with God.
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Submitted by Patman on Thu, 2008-11-20 17:59 Hi. I have been on Lamictal since 2001 and Keppra since 2003. Now I take 400mg Lamictal and 4,000mg of Keppra every day. Both make me tired, and I've heard others on this website say that as well. I'm still not sure if they have increased my appetite, but at least one or both of them gives me gas and I have to use the bathroom much more than I used to. But don't let this get you down, because if you look at many comments to others on this website, some people say that these two increase appetite, some it decreases, and others have said that neither affect them at all. The reason I put up with the side effects is because they have cut down major seizures drastically. I still have partial seizures but have not had any grand mal or any other major seizure since 2004. I wish you luck, and hope that they can help control your condition as well.

Submitted by Bloodyrose on Mon, 2008-11-24 17:02 Just thought I'd update for anyone interested on more experiences on these two combined:
About an hour after the first dose I felt quite tired, but it was pretty fine until of the next day (three doses in) when I got really tired. Spent the next day in bed because I couldn't move very well. Didn't fee dizzy though, which I was warned about. Appetite is next to nil, which is the one I was most worried about. Food smells okay but tastes hideous and I can't seem to bring myself to eat it. Hope this one will wane a bit, though can't say I
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will miss the inevitable weight I will lose if this keeps up.
Re: Darren.S.A Anyone on Lamictal AND Keppra?

Submitted by Darren.S.A on Mon, 2008-11-24 21:55 I have been on Keppra for over a year now as I remember, I have been on Lamictal since I was diagnosed, the Keppra has become new to me as I was on Epilim but that caused weight gain & other problems. With taking 200mg Lamictal morn & night now as my seizures are still uncontrolled I am still having twitches,loss of memory,trouble sleeping,aggressive,unsteady taking the Lamictal. The Keppra I get the same side effects I have recently broke my neck because of my uncontrolled seizures.

Submitted by maracutanu on Mon, 2008-11-24 20:30 i take 200 mg lamictal and 1000 mg of keppra per day. the first week or so i was extremely tired and dizzy, but since i can't say i've noticed any side-effects (i try not to think about any possible side-effects, that helps) and to be honest starting taking keppra must be one of the best choices i've made. it completely eliminated my "jerks" and i haven't been feeling "weird" since. you have nothing to lose.

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Submitted by Jamie-lynn on Mon, 2008-11-24 23:17 I am currently on Lamictal and Keppra. I have been on Lamictal since I was diagnosed and was eventually put on Keppra. I just got put on Keppra XR (Extended Relief) and it has been great. My "jerks" have been controlled and I have been happier. As far as side affects, the only thing I can remember is becoming really sleepy and tired at first, but as the weeks went by I started to get back on track. This really helped me and I don't think you have anything to be worried about. I hope this helps!! Jamie-Lynn

Submitted by kgrant on Tue, 2008-11-25 07:12 Hi I am on 300mg Lamictal twice a day and 250mg Keppra twice a day. I went onto the Keppra after having my baby nearly 2 years ago due to having an increased amount of absences. I have had no problems with it and have decided to remain on this doseage. Like you i am also in the U.K. ( Berkshire ) I am from South Africa but have been here the past 9 years but have had many problems with my NHS neurologist and i have very little faith in them too. I have see 4 different neurologist in the past 9 years and everyone of them has a different oppinion and it's never the same as the last one. 4 weeks ago i hit my head badly when i fell down the stairs and started to get very dizzy spells and the absence seizures again. I also suffer from Tonic-clonic seizures. I saw my doctor 4 times as things were getting worse and eventually he sent me to Royal Berks hospital in Berkshire for tests. When i got there, i thought they would do an E.E.G. - only to be told they dont have an E.E.G
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machine there and would have to go to Oxford hospital. As my symptons were not that "serious" accoring to the doctors i would have to go to Oxford hospital as an out patient and it would take about 8 weeks to get an appointment.....i am sure you know how it goes being on the NHS. I was so shocked! How can such a big hospital have no E.E.G machine???? anyway - my dizzyness has gone away but my absences are still there. I am planning to go back to SA to live next year and would rather wait to see my neurologist there. i am so tired of people not believing me or telling me that i should not be having absences as an adult that i am giving up. I always go see my neurologist in SA when i go home once a year for a holiday and i feel so much better after seeing him.... If you want to speak to me or ask me any questions, email me at kgrant@caps-solutions.co.uk Thanks Kate

Submitted by lsdor81 on Fri, 2008-12-05 05:55 Hi, I was on lamictal monotherapy for about 8 years, and everything was grand. Then my seizure control was lost and I decided to find the best consultant in the UK (I'm from NI)-and I found one of the experts-a Dr John Craig. He put me onto Keppra. At first, I wasn't convinced it was working-I was having no auras and just dropping into tonic-clonics. Then I stopped the lamictal-and I have never looked back-Keppra, for me, is brilliant.
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I couldn't believe that when I first met him, that he told me my consultant was actually a specialist in MS and NOT epilepsy. Just shows how the NHS doesn't give a toss about people with epilepsy.

Submitted by ahardway on Fri, 2008-12-05 12:31 Hi Bloody, I am also on both Lamictal and Keppra myself. I was put on lamictal after my last severe grand mal last November 2007. Since I was put on that it had actually stopped my grand mals and i have not had any convulsions since. However, at the begiining of this year I started having petit mals right around the time my periods were getting ready to start. When that started happening I myself was put on the Keppra being told that it works specifically well with women who experiance the hormonal seizures. I am on 2000mg Keppra, 500mg Lamictal, and 500mg Phenytoin. My seizures started 3 years ago right after I turned 24 (I am 27 now). the Keppra helped my hormonal seizres some what and I have been seizure free since October. However, because of the fact that I am on so much medication and have no cause for my seizures to start I have just has surgery done to my Left Temporal Lobe on November 4th. It has been 1 month and I am doing ok. I am sorry to hear about the problems that you have had, but the keppra has hepled me out some what. i may not have a whole lot of things to help you out , but I hope I have done somewhat. I wish you luck and I am sure once you get used to it, you will be just fine. Liike with all new meds. your body just has to adjust to them.
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Submitted by jamie crowell on Mon, 2008-12-08 19:17 Jamie Crowell hi, bloody Iam on not only keppra and lamictal but also felbatol also have the vagal nerve stimulator. All this and i am still having seizures. I have been on 18 different meds and am currently on 2200mg of felbatol 400mg of lamictal and 1500mg of keppra in the morning 1200mg of felbatol 400mg of lamictal and 1250mg of keppra in the afternoon 600mg of felbatol 400mg of lamictal and 1000mg of keppra at night. the lamictal and keppra are o.k. but the high amount of felbatol gives me insomnia so i don't go to bed until midnight and even then i still have trouble sleeping. altogether i take 23 pills a day. I am happy to say that i have not had a grandmal seizure in over 2 years. I have small seizures that will only last a few seconds but i some times become incontinent when i have them. Hopefully i will someday be able to get them under control.

Submitted by stumblin on Sat, 2009-06-06 12:17 HI, I was strciken wih siezure disorder/epilepsy after having a tumor resection 13 years ago. I'vr had 3 more subsequently. I was started on dilantin and phenobarbital. That worked fine but I also take coumadin which reacts directly with dilantin. It was a chemistry experimentthat took a toll on my gallbladder - now removed. My body either got used to or quit proessing the dilantin and I had a time with tonic clonic siezures.
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I had been seeing a neurologist at GWU but now see a neuro group out of Alex, VA by the name of ALFA Neuro. As we all know, a doctor that takes his/her time to listen and talk WITH you rather than At you is a blessing. My old doctor had started me on Keppra wih the plan to wean me off dilatnin. After a bout of edema on my brain, a result of radiation surgery for meningiomas, my new team of doctors put me on lamital as well, At that time I was taking 1000M of Keppra, 400M of dilantin, 180M of pheno and 100M of lamictal. 4 meds at once with the plan to get me off the dilantin. 6 months later and I am on 3000M keppra, 150M lamital and 180M pheno and no dilantin - yay. The only thing I know that has happen to me is I haave gained an unwanted 40# and my sleeping is erratic as hell. No siezures as of yet and I have ativan for when I get feeling wierd, I think the pheno stops any jerking of my hands and stuff. Good luck

Submitted by emilyseizure on Tue, 2009-07-14 14:32 San Francisco, California Hello, I've been on Lamictal and Keppra for the past 10 years. Keppra is just great! It stopped my myoclonic jerks immediately! (I started having the jerks in High School). However....I'm having big
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problems with Lamictal. It is causing me severe memory loss - severe to a point where I lost my job because of it. Nevertheless, just because it didn't work for me doesn't mean it won't work for others. I was on Lamictal for about 8 years before it started causing me problems. Overall, I've heard that Keppra is a great drug. I have faith in it. As for Lamictal, monitor it. Sincerely, EmilyP

Submitted by tweety 12 on Tue, 2009-07-14 20:38 im on both for the last 8 months im on 750 twice a day and lamictal 100 twice a day

Submitted by rachgamboa on Thu, 2009-07-16 16:16 I am taking 750mg twice a day on the keppra. 25mg of lamotrigine and will increase to 100mg a day within the next three weeks. I am getting of the keppra though-thank god!! I have had terrible side effects from keppra--anger, depression, restless nights. I am not sure if it is b/c of the keppra or the lamotrigine. I would rather be off of the keppra though. I have had several seizures a day when I was on it which resulted in pure mania and depression. good luck. Rach

Submitted by ahardway on Thu, 2009-07-16 16:50 Im taking both meds as well. So far it has worked great for me and I have not had a whole it of
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trouble. I am taking 500mg (250 2x/day) Lamictal, and 2000mg (1000 2x/day). I was put on the Lamictal to stop my grand mals and ever since then I have not had any convulsions(Novemver 2007 was my last GM) I started taking the Keppra last year (2008) because I statred having the very small Petit mals about everyother month around my menstral period. So therefore, mine were def. the hormonal type that a lot of women get and that was when i was put on the Keppra and it has been great. My last seizure was September 2008 so here in two months It will have been a year since I have had my last seizure. I hope things go well for you.

Submitted by sorokin1 on Thu, 2009-09-10 21:08 I have taken Keppra for about a year now, and i have gotten every side effect possiple. Now im getting switched to Lamictal and hopefully from what my buddy says it will stop my grand mals.
Wish you the best of luck
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Submitted by Vicki_Sue on Fri, 2009-09-11 03:32 Last year my nine year old got rashes under his arm pitts and behind his knees while on Keppra and Topamax. Now on Lamictal, Topamax and Tranxene. He has daily bloody noses. In May he went to the ER due to huge blood clot just hours after siezing, I feared the blood was coming from his brian the doctor were able to the the broken capilary and issue an Rx. Pior to that he was on Depokote for six years. Last month he got the VNS Theraphy implant. Hoping to slow down this medication merri-go-round, or should I say terrified-go-round. Stay Diligaint

Submitted by Vicki_Sue on Fri, 2009-09-11 03:32 Last year my nine year old got rashes under his arm pitts and behind his knees while on Keppra and Topamax. Now on Lamictal, Topamax and Tranxene. He has daily bloody noses. In May he went to the ER due to huge blood clot just hours after siezing, I feared the blood was coming from his brian the doctor were able to the the broken capilary and issue an Rx. Pior to that he was on Depokote for six years. Last month he got the VNS Theraphy implant. Hoping to slow down this medication merri-go-round, or should I say terrified-go-round. Stay Diligaint

Submitted by Clarice25 on Fri, 2009-09-11 11:28 I have been on 1500 mg of keppra and 500 mg. of Lamictal for about a year now..and I have had no side effects from either of them..I was on depakote and lamictal before I switched to the keppra and since I made the switch I have lost 30 lbs and I am feeling great...Good luck with what ever you decide to do..! ~Danielle
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Submitted by tweety 12 on Tue, 2010-01-19 21:09 i was on both for 6 months till i had a reaction to the lamictal a real bad rash on my legs and a postive ana in my blood becouse of it so they had to put me on topamax

Submitted by probell on Wed, 2010-01-27 14:43 I was on Keppra monotherapy, 1500mg twice daily. It had no side effects for me, but also did not prevent seizures. My doctor recommended adding Lamictal but I insisted on one drug at a time. I switched to lamotrigine (generic Lamictal). It seems to prevent my seizures and it has no major side effects for me.

Submitted by devondaybreak on Thu, 2010-03-04 22:09 im 14 years old and have been taking keppra and lamictal for about a year. so far, i have noticed really weird changes in mood. im almost a different person now. i've had thoughts of killing myself and dying. i've also been very tired every day and its really hard to fall asleep every night.
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my doctor also mentiond something about ADD or ADHD but im not really sure. but if you start getting a rash its advised to go to a hospital right away. but all in all, i havent had more than 5 seizures since the day i started keppra and lamictal. but i do have a ? my doctor said that the keppra was only to be taken for like 8 weeks until my body was used to the lamictal. but the day i stoped taking the keppra, i had a gran mal seizure. but he never really told me muh about that. he just kept me on the keppra and hightend the amount i was taking. and i was hoping for more info on that subject....

Submitted by MelodyF on Sat, 2012-05-05 07:36 Hiya, I was taking both medications last year for a short time of period (changing to keppra) but was an
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absolute mess for about three months. I suffered from depression and anxiety and loss in appetite (I had lost 9pounds in three months). I'm now taking Keppra x2 500mg a day. Once I stopped taking lamictal I felt much better for a while but it seems to me that the depression is returning. The reason I changed from lamictal to keppra is due to lamictal not helping, at all. My fits became much worse. I had up to four absences a month, sometimes more, and then decided to go back to see a neurologist. I was fit free for some time (years) but suddenly it started worsen. I will go back to my neurologist to discuss more... MelodyF

Submitted by Robina3 on Thu, 2012-05-24 05:14
I am 64, female, married, no children. My epilepsy started almost from birth - I've been on a lot of different drugs. I have been taking Lamictal and Keppra twice daily for over three years. My seizures are well controlled, only night-time ones about every two months, and day time absences almost every day. I can cope with the absences - they only last a moment, breaking my concentration but not affecting motor skills. The only real problem I have noticed is my memory - it has been badly affected. My long term memory isn't too bad - I can remember all the names of my
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schoolfriends and teachers from 50 years ago ! - but mid term memories have largely disappeared. This is sad and frustrating for me and other people, as they have to keep reminding me of events that are important to both of us. My husband is very understanding, but it can't be easy. Making lists and lists of lists is the only way to get round this. Names are a real problem too, unless I see someone regularly - repetition, I suppose. Memory loss is a sign of aging, I know, but I don't really feel that old yet. If anyone out there has memory issues, let me know. Best wishes Robina3

Submitted by teresa2step on Mon, 2013-09-23 00:16 Hi Robina3, I have the same problem with memory. I'm 66. It was a problem growing up when I didn't know what I had. I had a hard time in school, but managed to get through. I picked Art and Art Education, where I would be with children. I had a complex then and even now to a degree. Like
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a lot of things, we learn to cope. We pick what we are best at and move on..and laugh. Wishing you the best, Teresa

Submitted by semason on Thu, 2012-05-24 20:42 I'm 43, and have been on Lamictal and Keppra for a few years, along with Zonegran (Zonisamide), although it's really Epanutin (Phenytoin) that has prevented grand mal seizures in me for several years now (although strange Jacksonian motor seizures sometimes occur in bed nowadays starting from the left hand & moving up to the head). There are several simple partial seizures per week (for about 45 sec), triggered by stress, tiredness, or noisy environment (e.g. several conversations). Complex partial seizures occur a few times per year. As for the 4drugs, it's hard to know which causes what side effects. The Lamictal dose is 175mg morning & evening, & Epanutin is currently 1000mg morning & 1250mg evening. I suspect that the Keppra adds to my sensitivity, so that I can be provoked to lose my temper quite easily. All probably cause tiredness, & something makes it hard to concentrate (thought is distracted when reading), and memory has been affected for years (it's hard to remember names or words or what I've done in the week, and I often can't recognize people who remember me well and used to know me as a friend). It helps to think positively, though, and not worry. I have still managed to get certificates in recent years (e.g. ECDL, TESOL), & remember childhood, but hardly anything of the Medicine I had to quit studying 20 years ago & little of the subsequent Physiology degrees (those were before Lamictal & Keppra). Thankfully, disease hasn't prevented me from things like sometimes playing the piano / organ for church services or friends, but medication has prevented me from travelling to teach abroad long-term. Best wishes

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Submitted by carden on Tue, 2012-06-12 15:35 I have been taking Lamictal and Keppra now for 5 years after 25 years on Dilantin. Later Lamictal was added but I was still having breakthroughs. Doctor said he suspected the Dilantin was no longer working so removed and added Keppra. I have been seizure free for that entire time. Longest itime in my entire life. I obviously swear by it. I take a higher dose than most, 3 times a day. What I am dealing with, currently, is a change of prescription companies with my health provider. They are refusing Lamictal and will only cover generic. Why would I do that? Why would my health care provider allow that? Would they rather I hurt myself or someone else and have to pay for hospital care or worse? I can't figure... One warning... Lamictal is INCREDIBLY expensive. If I were to pay out-of-pocket for mine it would be over $600 a month. Again, sorry for going off, the combo has work well for me.
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