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Old 09-04-2008, 01:24 PM   #1
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mott07 HB User
Keppra Switch

I was diagnosed with primary generalized seizures 14 years ago and have been entirely controlled on Tegretol for the past 12 years (I was on Depakote 1st and that worked less well). I was recently diagnosed with a second medical condition that makes me very tired and am now trying to improve my energy levels in any way I can. As part of that effort, I talked to my neuro about switching epilepsy meds. My neuro, it turns out, was interested in taking me off the Tegretol anyways, because of newer studies indicating its long term negative effects on bone health. I started on Keppra two weeks ago, with 1 in the am on top of my full Tegretol prescription. Yesterday I began taking 2 Keppra (1 in the am/1 in the pm) and 1 less Tegretol, which I will be doing for another 2 weeks, and so on and so forth until I am only on the Keppra.

I've experienced the following side effects pretty consistently so far: headache, nausea, fatigue, dizziness, weakness. The headaches are by far the worst issue. I have also had intermittent stomach upset and once last week even vomiting.

Here are my questions:
(1) Has anyone else used Keppra as a stand-alone medication, as monotherapy, for primary generalized seizures and how successful has it been in controlling your epilepsy?
(2) Do these side effects usually subside once your body gets used to the medication? Should I expect other ones - e.g., the mood changes, etc. - or would those have already presented themselves?

Thanks so much.

 
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Old 09-05-2008, 05:21 AM   #2
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cher1052 HB User
Re: Keppra Switch

In reply to your note-I'm on both Teg xr and Keppra-Ibegan the keppra about5-6 years ago.

My neuro has been asking me to begin tappering my Tegretolxr also.

He is also looking at the side effects it has on the liver. Keppra at this point isn't showing side effects on organs/bones.

As far as me-it's my decision to make.

The side effects-I really didn't notice alot when I started taking it. Everyone's body is different-and handles meds in different ways.

Keep notes/diary on all of this-call your Dr and talk with him-ask him the ?...see what he says.

I hope this helps in some way.

cherie

 
Old 09-05-2008, 09:42 AM   #3
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Travis from MN HB UserTravis from MN HB UserTravis from MN HB User
Re: Keppra Switch

Quote:
Originally Posted by mott07 View Post

I've experienced the following side effects pretty consistently so far: headache, nausea, fatigue, dizziness, weakness. The headaches are by far the worst issue. I have also had intermittent stomach upset and once last week even vomiting.

Here are my questions:
(1) Has anyone else used Keppra as a stand-alone medication, as monotherapy, for primary generalized seizures and how successful has it been in controlling your epilepsy?
(2) Do these side effects usually subside once your body gets used to the medication? Should I expect other ones - e.g., the mood changes, etc. - or would those have already presented themselves?

Thanks so much.
I am on Teg XR and Keppra; as well as Topamax. I only had issues with Keppra back in (thinking) 2000 or so when I was placed on 4000mg/day. That was resolved by the Emergency room dropping me (Neuro refused to talk to me) to 3000.

Keppra for mono therapy is RARE, it is listed as a add on medication, however from what has been posted on here SOME people have been treated that way.

I can tell you the time line for Keppra to notice issues (time for medication to adapt to body) is 24 HOURS. I noticed right away (within 2 days) that 4000mg was a problem and called my doctor. He ignored my call and I slowly went downhill over 6 weeks (On TegXR Keppra and Dilantin then).

I'd ask any changes in body weight, eating patterns, dietary habits, sleep. Those can have effects on medication levels.

Also, when was the last time you had levels done? Is it time for another?

SOME patients (a percentage) have experienced what is coined as KeppRAGE. Uncontrollable bursts of emotions, from anger, to tears seemingly related to the medication somehow.

Best advice, don't expect ANYTHING bad. Hope all goes well, but know somewhere in the back of your head there's a REMOTE CHANCE something COULD happen. You don't want to effect the outcome of the transition mentally.

--Travis

 
Old 09-05-2008, 04:35 PM   #4
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loriy HB User
Re: Keppra Switch

My son has had several different medication switches and each time he goes through aperiod of being over medicated because you have to start the new one before you start dropping an old one. I believe he has withdrawl symptoms also.. in addition to being over medicated. He has a lot of the same symptoms you seem to have. He has changed meds so many times that I am dreading it for him. Right now he is coming off of topamax and that has been by far the worst for him. Also he was up to a full theraputic dose of lamictal before we started taking the topamax away. He is about 1/2 way off of the topamax and seems to be feeling better. He also takes Keppra. Also another observation: his seizures have almost stopped since we started taking away the topamax. Does anyone out there know if topamax causes seizures?

 
Old 09-18-2008, 07:05 PM   #5
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Re: Keppra Switch

Quote:
Originally Posted by mott07 View Post
I was diagnosed with primary generalized seizures 14 years ago and have been entirely controlled on Tegretol for the past 12 years (I was on Depakote 1st and that worked less well). I was recently diagnosed with a second medical condition that makes me very tired and am now trying to improve my energy levels in any way I can. As part of that effort, I talked to my neuro about switching epilepsy meds. My neuro, it turns out, was interested in taking me off the Tegretol anyways, because of newer studies indicating its long term negative effects on bone health. I started on Keppra two weeks ago, with 1 in the am on top of my full Tegretol prescription. Yesterday I began taking 2 Keppra (1 in the am/1 in the pm) and 1 less Tegretol, which I will be doing for another 2 weeks, and so on and so forth until I am only on the Keppra.

I've experienced the following side effects pretty consistently so far: headache, nausea, fatigue, dizziness, weakness. The headaches are by far the worst issue. I have also had intermittent stomach upset and once last week even vomiting.

Here are my questions:
(1) Has anyone else used Keppra as a stand-alone medication, as monotherapy, for primary generalized seizures and how successful has it been in controlling your epilepsy?
(2) Do these side effects usually subside once your body gets used to the medication? Should I expect other ones - e.g., the mood changes, etc. - or would those have already presented themselves?

Thanks so much.

 
Old 09-18-2008, 07:16 PM   #6
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Re: Keppra Switch

Hi,
I am new to this so bear with me. I have had epilepsy since I was 12 yrs old andd have been on many meds. I have grand mal seizures. Iwas weaned off of Dilantin then weaned off of Depakote due to tremors. At the time I was taking Depakote I was also starting Keppra. I took Keppra for 6 months by itself. A total of 2000mg -am, 2000mg-pm. In that 6 months I had 3 seizures. Before that I had gone over 2 years seizure free. I am now on my 4th week of Lamictal added with the Keppra. I went and saw my old neurologist today. The one who dx me when I was 12. He suggested discontinuing the Lamactil and start Tegratol, because the Tegratol has Dilantin, We think the Dilantin was really controlling the seizures. He really likes the Keppra as well because it usually doesn't cause the drowsiness the other meds do. Is anybody out there on a combination of Keppra and Tegratol. If so are you having any horrible side effects?

 
Old 09-19-2008, 07:11 AM   #7
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SentenceDoing HB User
Re: Keppra Switch

Quote:
Originally Posted by sassyt36 View Post
Hi,
Is anybody out there on a combination of Keppra and Tegratol. If so are you having any horrible side effects?
I'm currently on Tegretol and Keppra (and recently added Lamictal) and have been for a long time (though I'm starting to be weaned off the Tegretol and hopefully the Keppra, too, so I can hopefully be on only Lamictal. yay!). I had no side effects when the Keppra was added to the Tegretol. When I first started on the Tegretol, I was SOOOOO sleepy for about a month, and then I had no other side effects. The only side effect from Keppra was weight gain. But the combo of both meds together didn't give me any other side effects.

 
Old 10-02-2008, 06:24 PM   #8
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dollydidit HB User
Re: Keppra Switch

Hi
My b/f is currently on Kepra and Tegratol at first he was having light dizzy spells headache loss of appetite as the Kepra has increased only been on it about 7 weeks we found that he started having really bad mood swings feeling angry all the time and the headache has got worse then 2 weeks ago once the Kepra dose was at 750mg am and pm he began to get very depressed we went and saw the gp (neuro not available till next month) he has reduced the Kepra to 500 am and pm but b/f is still having bad depression we are back to gp today to tell him to take him off altogether as we are scared as to what he might do. I have read alot about Kepra and was really hoping it would suit him as it is really known to have no side affects if you can tolerate it it also was supposed to work great with the tegratol but b/f is still having seizures so we are taking tegratol back up and keppra down the sooner the better i say but everyone is different and you just need to persevere and see how you go.
best of luck
peta

 
Old 12-07-2008, 06:30 AM   #9
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alana1953 HB User
Re: Keppra Switch

I am also to posting to bear with me. For the last 40 years my grand mal seizures have been controlled with a combination of dilantin and phenabarbital. For the most of the time my seizures were totally controlled and when I did have one it was usually caused by forgetting to take my medication......self inflicted.


However for the last 4 years the medication does not seem to be as effective and I went to a new doctor and she put me on Keppra; I have had two seizures while weaning off Dilantin. My main concern is the transition off Phenobarbital. Has anyone had to do this and what are the problems??

 
Old 12-12-2008, 06:47 PM   #10
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zachboy HB User
Re: Keppra Switch

Tegretol kept my seizures under control for 24 years. Tegretol made me anemic but I was willing to live with being light-blooded and seizure free. When I got a bone denisty test last July I had to change meds. My bone denisty is on the borderline of osteopenia. Starting on Labor day I slowly transitioned from Tegretol XR (800mg) to Keppra (1500mg). The only side effect I first noticed with Keppra was drowsiness. My liver enzymes spiked high when I was taking both meds. The FDA is currently studying wether Keppra can cause Tegretol toxcity.
I took my last Tegretol on Nov. 21. Being on it for 24 years I sure went via withdrawl. I felt lightheaded, frigid, numbness, and tingling sensations. When outside for more than 5 minutes in this cold weather my feet and hands would go completely numb. I was tested for multiple scerosis and upper & lower respiratory but everything came out negative. They were normal tegretol withdrawal symptoms.
As I stated earlier the only Keppra side effect I felt was a few weeks of drowsiness. After I stopped Tegretol the Keppra side effects came on. I lost my apetite, had trouble sleeping, lost some hair, got agitated easily.... Those side effects are slowly tapering off.
Since those side effects didn't come until after stopping tegretol, that just tells me that our bodies can only absorb so much? Maybe also because my WBC has trippled, and my RBC has doubled. I ran my first 5K race within 20 minutes last weekend. Being full blooded sure has increased my metabolism.
Taking only 1500mg of Keppra (500mg 3xday) has kept me seizure free. I surely am grateful.

Last edited by zachboy; 12-12-2008 at 06:52 PM.

 
Old 01-08-2009, 08:54 PM   #11
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Re: Keppra Switch



I just want to add for those who may be switching to Keppra that I have been taking it for about 8 months now, since I was first diagnosed with epilepsy last year at the age of 30 and taken off of Dilantin after only 1 month. Other than some mid-afternoon "brain fog" and very occasional nausea, I really don't experience the side effects others seem to be so concerned about. Each time my dose was titrated up I did have an adjustment period, but the side effects eventually resolved. I am now taking Keppra XR 3000mg per day. I am seizure free for 2 months, which is my longest time yet....so hopefully the change to the new XR in November will get my grand mals under control! So far, so good.

Also, from my experience as a nurse....Don't read too much into the side effects of rage, etc. While they CAN happen, they are rare. The drug companies have to list all possible side effects....as humans we just tend to fixate on the worst possible scenario. Again, side effects are listed as a warning, not as something that will certainly happen.

 
Old 01-15-2009, 04:12 AM   #12
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dominique21 HB User
Re: Keppra Switch

I'm happy for you. But I just had to say that from the moment I started using Keppra my seizures did indeed increase and my neurologist DID increase the dosage. At present my dosage is 2g each day. I'm a 30 year old female and sorry the side effects and intense. My hair has started to fall out, my stomach has a bug and my mood swings are really intolerable, infact I'm hostile.

I was diagnosed with epilepsy since the age of 16 and true to my word, my epilepsy was controlled so right now I'm not used to being on all these drugs and have applied for the vagus nerve stimulator implant. My neurologist suggests it.


All my luck to you though...

Quote:
Originally Posted by scah View Post

I just want to add for those who may be switching to Keppra that I have been taking it for about 8 months now, since I was first diagnosed with epilepsy last year at the age of 30 and taken off of Dilantin after only 1 month. Other than some mid-afternoon "brain fog" and very occasional nausea, I really don't experience the side effects others seem to be so concerned about. Each time my dose was titrated up I did have an adjustment period, but the side effects eventually resolved. I am now taking Keppra XR 3000mg per day. I am seizure free for 2 months, which is my longest time yet....so hopefully the change to the new XR in November will get my grand mals under control! So far, so good.

Also, from my experience as a nurse....Don't read too much into the side effects of rage, etc. While they CAN happen, they are rare. The drug companies have to list all possible side effects....as humans we just tend to fixate on the worst possible scenario. Again, side effects are listed as a warning, not as something that will certainly happen.

 
Old 01-16-2009, 04:37 PM   #13
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caverdude HB User
Re: Keppra Switch

Hello...yet another person starting the medicine switcharoo. I've been seizure free (grand mal) for 19 years via Tegretol, but recently found out the medicine has robbed my bones in the process of keeping me seizure free. I now have osteoporosis, even though I don't have any of the normal risk factors and have been very physically active for decades. My neurologist has prescribed Keppra 1500mg 2X/day. I need to build up my Keppra intake and then after a month or so, start the decrease in the Tegretol (200mg 3X/day). I hope I can have control of my seizures and avoid the bone density problems induced by the Tegretol. Anyone taking Tegretol should get an annual bone density exam and take a calcium/vitamin D supplement if they don't normally intake enough of those two items. Wish me luck and I hope others can avoid the osteoporosis fate that Dilantin, Tegretol, and Phenobarbital medicines induce.

 
Old 01-18-2009, 04:28 AM   #14
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alana1953 HB User
Re: Keppra Switch

I went through a similar med switch as well. Am completely off dilantin and am taking keppra twice a day (AM/PM). Still taking phenobarbital in the PM as well and don't know when they plan to reduce it but since it is a barbituate it will be harder.

My side effect with Keppra......

Mood swings at first. For me taking Keppra on an empty stomache seemed to aggrevate my mood swings so I always eat right after taking the med and it seems to have helped

 
Old 05-27-2009, 12:29 AM   #15
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Thumbs up Re: Keppra Switch

I understand completely. I have epilepsy and I also am on both those meds. Plus Lamictal. The doctor says with the topamax its cause I am toxic. I am a female who is 5'5" 175lbs takeing 200mg topamax and 1500mg kepra twice a day both those. The lamictal to. The Doctor saw what the topamax was doing to my body and is takeing me off of it probably the best for you. With in the last year I have had three kidney infections four stones and muscle spasms like crazy. I have been on topamax for five years. So do what you can now. The kepra works great though. one of the best. The symptoms will decrease. I hope that helps.

 
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