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View Poll Results: Which AEDs gave you the worst side effects?
Depakote / Valproate/Valproic Acid/Divalproex Sodium 118 26.11%
Dilantin / Phenytoin 90 19.91%
Keppra / Levetiracetam 137 30.31%
Lamictal / Lamotrigine 87 19.25%
Neurontin / Gabapentin 32 7.08%
Phenobarbital 45 9.96%
Tegretol / Carbamazepine 79 17.48%
Topamax / Topiramate 85 18.81%
Trileptal / Oxcarbazepine 38 8.41%
Zonegran / Zonisamide 36 7.96%
Multiple Choice Poll. Voters: 452. You may not vote on this poll

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  #41  
Old 02-22-2008, 07:04 AM
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penobarb


Originally Posted by Shelley View Post:
http://tinyurl.com/274akx
The side effects of meds stink.
Man is there any way to improve my brain faster? I know I am a bit lazy. (Maybe it was the broncitis keeping me down?) But I was on this crap when I was a kid, and it was awful. I was stoned all the time and had more seizures on it than off.
Zorontin wasn't much better.
My absence seizures are now diet controlled, and I never want to go back to meds again.

Last edited by Shelley; 02-23-2008 at 06:52 AM. Reason: spelleing
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  #42  
Old 02-22-2008, 01:00 PM
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I was drugged up on tegretol. whoo hoo! Then mean little thing. I got mean. But I was just a ten year old girl. Who just found out I got epilepsy.
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  #43  
Old 03-21-2008, 09:40 AM
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Ive in the last three or 4 day's lost my sence of taste on Tegretol / Carbamazepine I cant taste anything.... weird.... anyone ever have this happen?

I'm starting to feel moody too
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  #44  
Old 03-21-2008, 10:37 AM
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Originally Posted by keyna View Post:
I thought Zonegran was going to kill me, the 1st few days not so bad, then I could only get out of bed to crawl to bathroom and vomit, and you know do the other thing. The pain was soooo bad!!!!!!!! Mom had to take me to the ER.
I had the same reaction to Zonegran. I vomited so bad that I had bruising all over my face, it was horrid.

I went straight from that to Keppra and still have no appetite (it's been several weeks now since starting the Keppra). I'm basically on a liquid diet right now because I can't eat. Nothing tastes good and food repels me for some reason. I just can't get hungry. I don't know if the Zonegran messed up my digestive system, or if the Keppra is doing this.

Has anyone else had appetite issues with Keppra?
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  #45  
Old 03-21-2008, 11:10 AM
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Im able to eat ice cream i ate a hamburger last night but had to add jalapenos hot peppers & chinese hot mustard just to taste anything.... maybe i should pick up some
habaneros to add to my food! mmmmmm yummy!
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  #46  
Old 03-21-2008, 12:38 PM
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I took diantin, and had problems with my gums. My teeth are in terrible shape. Phenobarbitol made me feel like I was in another world. I was put on mysoline because phenobarbitol and dilatin together didnt work. I was pregnant and was put on mysoline. that one didnt work, and then I was put on tegretol and gained about 80 lbs.
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  #47  
Old 03-23-2008, 12:57 PM
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I should have voted for trileptal instead of depakote...depakote was fine except for the weight gain. I would go back on it if I had to. Topamax was great at first..lost weight...then I started having memory problems, getting dehydrated very easily, had trouble sleeping...went crazy...

I'm on Keppra and Lamictal right now. I'd like to go only on Keppra because it did give me seizure control. And maybe take those B vitamins with it to control my inner b!tch.



^I just put this because I think it's funny. Like what is that thing? A banana riding a schmoo? Or something.
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  #48  
Old 03-25-2008, 10:56 AM
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Mamaruns - I am on Keppra and unfortunately have no issues with eating. I can eat like a teenage boy.
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  #49  
Old 03-25-2008, 11:37 AM
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Yeah I think that Zonegran messed up my appetite, as sick as I was from it (3 wks of vomiting almost daily). I haven't seen any info about Keppra causing loss of appetite. Could be stress doing it to me too, who knows.

Thanks for the response, Buckeye.
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  #50  
Old 03-25-2008, 03:48 PM
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Depakote


I was surprised to see that Depakote had the highest side effect percentage. I've been on all different types of medication and didn't have the greatest results. Either the medication worked fine and then throughout the years my body would grow a tolerance for that medication, or it made my seizure activity worse. I've been on all different combination medication as well. And I had surgery as well. My neurologist put me on a new plan where I'm taking a combination of lamictal, keppra and depakote. But I only take (1) 500 mg pill at night. This has reduced my seizure activity dramatically but I haven't noticed any types of side effects. What types of side effects has anybody noticed when taking this drug?
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  #51  
Old 03-26-2008, 10:56 PM
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It doesn't surprise me to see Depakote and Dilantin at the top of the list. My appetite on Depakote and Dilantin sucked! I know I have to eat right to help prevent seizures, and Lamictal has helped my appetite.
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  #52  
Old 03-28-2008, 11:30 AM
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Ok for me
Topamax- I just feel like I have lost control of my body! OK, maybe TMI, but here goes... I have at times, lost control of my bowels... i have the WORST runs ever. NO appettite. I've lost 40lbs at this point, BUT my epileptologist seems to think this is ok. I can't seem to find words, which makes me feel stupid, often. It is completely frustrating! And everything tastes horrid! Yes, for the most part it seems to be controlling my tonic clonic seizures, but I have been having other funky things happening. Like falling asleep in bed and waking up in anther room and not knowing how I got there? I will have periods of time that are completely gone. And my doc writes it all off as "anxiety". Cause yes, I do have anxiety. Oh, and my feet tingle on Topamax. I was on Dilantin for 9ish years and I dont' remember ever even feeling like I was on anything. I hate Topamax.
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  #53  
Old 03-30-2008, 02:39 PM
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mishela - try starting to keep a detailed diary of all of this for your doc. showing it to him in writing may get him to 1) give it more attention and 2) possibly find patterns in the side effects.
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  #54  
Old 03-30-2008, 04:47 PM
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buckeye
i have! he honestly laughed at me and asked me if i needed a referral to a psych doc to check for OCD!! i continue to keep a journal though, in hopes that one day the military will move us and i will get a different doc.
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  #55  
Old 03-31-2008, 06:28 AM
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milt doc?


Lemme guess, you're having to use a doctor on base, right? Have you had any military doctor that knew what was going on?
If you've had this since child hood, you can show a copy of your records to this idiot, as well as your diary. Otherwise, wait it out until you can get transferred.
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  #56  
Old 03-31-2008, 09:15 AM
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actually, no! i see a doc in downtown boise! and what's funny is that for the most part, i like him... or did... just lately, he seems to almost be playing this game with me... like, "oooh, let's see michelle have a seizure, that could be fun". it is entirely frustrating! but you are both right, and i will deffinately continue to keep my journal, and try to hang tough and hope for a transfer. we haven't been here long so i don't see one in our immediate future.
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  #57  
Old 04-01-2008, 09:55 AM
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minnbikergirl ,

I havent gained any weight yet while taking tegretol Im actually taking Carbamazepine one thing Im struggling with is wanting to eat sugar foods which ive never had a problem with until i started this med..... SO Ive bought fruit to eat when i have the overwhelming sugar craving..... I can see how I could put on alot of weight from this med as it makes you want to eat more often for some reason.... I gained 20 pounds while on lamictal I had quit smoking for a while.... Ive gone from 135 pounds to almost 160 pounds! and im 5"4... small boned.... my weight is really freaking me out.....

anyone have any ideas that might help? as for diet..... that doesnt have alot of fat.... like butter cream and mayo yuck! I havent really said much about this but the weight ive gained is starting to depress me alot.... I feel like a beached whale

Last edited by angel; 04-03-2008 at 06:00 PM.
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  #58  
Old 04-03-2008, 07:58 PM
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i agree spinnymommy - its proper scary.
for my keppra was awful - i could barely stand up for fitting. i was practically housebound and needed like 15 hours sleep, i couldnt bathe myself, talk on the phoe, look at computers, ANYTHING. i have no memory of my period on that drug either. nasty shizzle..

i dont see clobezan on the list? just an english one maybe??? i was taken off that quick too...

and for me i am on epilim (valporate) 500am/400pm and lamictal 100am/100pm... which are quite low doses??? (enlighten me!)
i lost loads of hair and put on a bit of weight when i started, but its ok now, im 10stone 11lbs and 5'10" so it could be worse... fortunately for me i had LOADS of hair before and was pretty skinny. i do miss the masses of hair, but id be lost without epilim.

altho when i get pregnant i might run into problems!

sorry went off on a tangeant there! off to bed - g'night!
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  #59  
Old 04-03-2008, 08:00 PM
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Originally Posted by spinnymommy View Post:
It amazes me how these drugs effect each person so differently. One that has horrible side effects for one of us works well for another. And one that works well for some of us has terrible effects on others.

These drugs are scary. I wish none of us needed any of them.
oops the above msg i worte was for you spinnymommy! i forgot to quote!
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  #60  
Old 04-03-2008, 08:03 PM
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i would like to add also, that i think weight is a real issue with epilim, and that for me (in ref to your comment angel) you just gotta wait, and the pounds will start to go after a bit...just try not to snack. i find it very heard as im a student so eating is what i spend all my money and time on! oops!!!
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