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  #1  
Old 01-17-2012, 08:30 PM
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Keppra


Does anyone have a 'good' story to tell about Keppra?

Every where I google I read some horror story about this drug. My sons pedi neurologist just put him on it due to my son having severe reactions to topamax and lomotrigine. Seems every new drug is worse.

There was another seizure drug, Epilim sodium valproate that looked good, but his doc said no to due to my son failing a metabolic blood panel - drug could lead to liver failure.

What a mess this all is
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Old 01-17-2012, 09:31 PM
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I just started Keppra today and I'm scared too! Keppra is eliminated through the kidneys rather than the liver. This may be a reason why they chose it. I believe there are only two (Keppra & lamicatal). I shuttered when she said Keppra (I am on topomax) and told her it was called kepprage but she explained the whole kidney v's liver thing which made it easier to at least give it a try. Lamicatal was horrible for me so I'm keeping my fingers crossed for Keppra. I just took my first pill this morning, 250mg every day for a week then up to twice a day (I'll drop the topomax by then). So far with just the one dose I am not angry but super tired. I'm little just 106lbs so I consider myself a pediatric patient One thing I notice is my eyes keep wanting to cross. Weird I know! It scares me a little but I shake my head a little, rub my eyes and it goes away. Also, I was definetly "loopy" on topomax, the Keppra today makes me feel a little drunk. But.....I'm just glad I'm not angry Good luck with this scary transition!

Sheri
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Old 01-17-2012, 10:01 PM
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I've been on Keppra 17.5 months at different dosages. In over 6 years dealing with this it's the only med I can tolerate. I am at 1750 mg atm. In the beginning it made me sleepy but I adjusted to that. The higher doses seemed to make me moodier but I also think alot of that has to do with how much sleep I'm getting, eating patterns, seizures, stressors, etc.

It's kind of like it gives you the ability to tolerate alot but if too much is coming at you then you "snap." Not like kill someone snap, for me it's that I need some space and relief from the incoming stimuli.

I've found that keeping a more regulated schedule and taking the meds at the same time daily really helps.
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Old 01-17-2012, 10:20 PM
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@ Eli, did you gain weight with Keppra?
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Old 01-17-2012, 10:37 PM
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Originally Posted by Sheripark View Post:
@ Eli, did you gain weight with Keppra?
Oh yes, sorry I forgot that side effect! Of course I rarely get out and since I was couped up in an apt the year I was at the epilepsy center a huge part of it was lack of activity. I put on 30-40 lbs immediately after starting Keppra but once I gained that amount my weight has stayed the same. So it's not like a life time of weight gain. I've also heard that the amount of weight I gained was common with women.
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Old 01-17-2012, 10:42 PM
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That reminded me of something funny. Alot of the weight went to my trunk - my waist is thicker and my bra cup size went from a "b" to a "d". When I complained to one of my drs he looked at my husband who was with me and said...."lucky man" (regarding the cup increase). So although I didn't appreciate the increase in my waist, I am loving the other increase!!!!
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Old 01-17-2012, 11:00 PM
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I reread your post so I'll supply some additional info: I was pretty small prior to the keppra plus the tegretol had made me deathly ill and left me at about 100 lbs. I had gotten back to a normal weight range for me of 130lb after being off all meds for awhile.

What I've learned: I take my keppra right before I have my meal because it seems to upset my stomach if I take it without food or later after eating. I also tend to have migraines when adjusting to dosage changes or if I'm not eating properly.

I keep a daily journal of everythingggggggggggg. Meds, food, moods, sleep, etc. That helped my epileptologist and I find a good dose and dose time. Because the standard dose and times my neurologist and epileptologist suggested werent working for me. I take one mid morning 500mg. 1 - 500mg about 8 hrs later and then the 750 mg before bed. Taking any more than 750mg at a time made me throw it up.

Of all the meds I've taken the keppra gives me less nightmares and nocturnal tonic clonics - I used to have a ton of those.
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Old 01-17-2012, 11:11 PM
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Ouch! Great information, thank you! I hope I don't gain weight, I would have a problem with that
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Old 01-17-2012, 11:15 PM
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Thank you so so much for sharing ...Hoping my son fairs well...so nervewracking these med changes are. At this rate, its gonna take a long time to get to a dose that will hopefully give him protection from seizures (he has tonic clonic frontal absence) ...Regarding nightmares, I hope the side effect you had Eli - them lessening - will be the same for him. He has many and will be involved in a sleep study end of February. Usually its about a dark man, or octopus, burning his eyes out and killing him. He says this happenes over and over than he wakes or wakes and than goes back into the dream. I have to wonder if he is not seizing to some extent when he has them. I feel powerless. He is only 4, just turned a few days ago.
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Old 01-17-2012, 11:25 PM
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Too add to my above post - My sons pedi said if he develpes mood/anger issues (he already has mood/behavior disorder seizure related) that she can put him on B6 - supposed to help. Anyone ever have this side effect and try the B6 and have it work?
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Old 01-17-2012, 11:37 PM
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Some people swear by b6. My neurologist said she has not seen any evidence to support it but it would not hurt to try. Funny, I actually started B6 today with my Keppra. I'm willing to see. Maybe it is a placebo effect?
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Old 01-17-2012, 11:38 PM
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Ive been on keppra for almost 14 years now. I think I was around 17 years old, and Im soon to be 31 in May. I was put on Keppra (3000mgs a day) then but I did start to have headaches. My dr who I started to see in November 2010, switched me over to Keppra XR (3000mgs a day) and it took the headaches right away! He did suggest I take the Vitamin B6, so I take that in the morning with the Keppra XR. I think it helps out alot with mood swings, and keeping me calm and more relaxed. For me, the Keppra has worked great! Ive had no problems with it. Ive tried the Lamictal back in April of last year and had an allergic reaction to it. Was on it for a couple of weeks, Wasnt the best drug for me! So I went back to being on Keppra XR and have had no problems!
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Keppra XR (3000mgs)
Carbatrol (400mgs)

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Old 01-17-2012, 11:39 PM
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I don't take b6 but I've heard it mentioned here alot.
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Old 01-18-2012, 07:38 AM
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I have been using Keppra 2,000 mg per day for about 2 years as a part of the rest of the drugs that I take, and have not noticed any bad side effects. No increase of temper (none that anyone has mentioned), nor any increase in weight.
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Old 01-18-2012, 07:50 AM
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I am a bit releived to finally here some 'good' stories about Keppra...My son was up tossing and turning quite a bit last night..a bit more than usual. Hope he does better tonite. He just took his morning dose so we'll see how he does during day hours. Really hoping he does not got sever side effects again.
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Old 01-18-2012, 11:35 AM
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Good luck Anna! It must be hard because he is so little. He is lucky to have a great mom like you! Researching and asking questions gives a little sense of control. I wish you both well!
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Old 01-18-2012, 03:39 PM
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I'm glad to hear of some positive results with Keppra.
I was on it briefly and it seemed to be very incompatible with me, and I was weaned off of it asap.
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Old 01-18-2012, 10:04 PM
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I've had juvenile myoclonic epilepsy since 2008, and I'm 17 years old, 200 pounds. Since the medication, I've only had two seizures since then. Both involved me not taking the medication.

Coming from a teenager, we like to take risks. Sometimes, for no reason at all. Your son HAS to realize that this is not an option.

I still have all my privileges and rights, such as my driver's license and my parents' trust. But I fell through the bathroom wall during my last seizure. I bit half of my tongue off during the one before that one. I was out for 5 hours before anyone found me. My girlfriend thought I was asleep on the floor.

KEPPRA WORKS. Almost too well. I've experienced no side effects. JUST TAKE THE ******** MEDICINE. hahaha. Don't forget your dose..
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Old 01-18-2012, 10:39 PM
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Originally Posted by ToABrighterFuture View Post:
I've had juvenile myoclonic epilepsy since 2008, and I'm 17 years old, 200 pounds. Since the medication, I've only had two seizures since then. Both involved me not taking the medication.

Coming from a teenager, we like to take risks. Sometimes, for no reason at all. Your son HAS to realize that this is not an option.

I still have all my privileges and rights, such as my driver's license and my parents' trust. But I fell through the bathroom wall during my last seizure. I bit half of my tongue off during the one before that one. I was out for 5 hours before anyone found me. My girlfriend thought I was asleep on the floor.

KEPPRA WORKS. Almost too well. I've experienced no side effects. JUST TAKE THE ******** MEDICINE. hahaha. Don't forget your dose..
Oh gosh, I am so hoping my kiddo (he is 4yrs old now) will not have to learn the hard way. I've been telling him how important the meds are ...etc. How scary - falling through the wall..your tongue...Good thing your girlfriend was there.

Thanks so much for the positive about Keppra. My sons 3rd night tonite - keppra. Hoping he will sleep a bit better. So far, I see no drug allergy reactions..But I am giving him benedryl due to the lamotrigine rash he got..I will stop giving the benedryl in 4 more days.
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Old 01-18-2012, 11:10 PM
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I hope he will catch on just fine. Its a routine that you just need to get used to, and, while it can be scary at first, its amazing how easily it can become the simplest routine to take a couple pills.

PLEASE tell him about my stories and ignorance! You simply CANNOT miss the dose. It works so well that I became over-confident! hahaha.

I was just like you before I was put on Keppra, terrified of the transition. But Depakote causes dramatic weight gain and all sorts of scary side effects. I have not once experienced a side effect from Keppra, except that I was sleeping better, and I no longer have jerks in the morning.

All scary stories on the internet aside, its an amazing drug. You just have to take the dosage. If you forget and its 4 hours past when you were supposed to take it, take it instantly anyway. Don't take any chances, because now I'm missing half a tongue (my girlfriend doesn't like that..) and a bathroom wall. But I could be missing my life.

I hope your son grows up to be a bit more responsible than I have been. But please be careful. I've taken all sorts of risks, and looking back on it, I don't know why I did it. Especially since he's starting at such an early age, I'm sure he'll make the transition to taking drugs very easily. I wish him, you, and the family luck.
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