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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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  #241  
Old 10-21-2012, 02:45 PM
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That's good, KarenB. Yeah, different drugs work for different people. Which is why there are so many of them out there.
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  #242  
Old 10-28-2012, 03:37 PM
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Phenytoin is killing me...I hate it! Any other drug I've taken sure it makes me tired but that's about as far as it goes this drug is unbelieveable I am spending most of my life in bed because of it.
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  #243  
Old 11-05-2012, 04:55 AM
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Tegretol first time I couldn't stand up was constantly dizzy and sick
Lamotrigine the headaches and hangover feeling each morning
Epilim hair loss and severe bruising
Clonazepam no bad effects
Pregablin thirsty

Now on keppra tegretol again (lower dose than the first time I tried it) and clonazepam with the only downside of the combination being that I feel very very tired
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  #244  
Old 01-06-2013, 06:57 AM
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i started to get really bad side affects after i started on lamotrigine. i still have to increase it weekly but i now have hardly any side affects
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  #245  
Old 03-06-2013, 10:03 AM
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Keppra gave me appalling side effects, no control, and I ended up losing large chunks of my long term memory, becoming almost like a different person, having to go into hospital to be taken off the v high dosage of the drug I was on by the end (they kept increasing it when things got worse rather than withdrawing) and having to repeat a year at uni as I missed so much due to losing all sense of what was going on. ( Sorry for the rant. I've had friends whose epilepsy was v similar to mine who have been totally controlled by Keppra - weird world isn't it!)
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  #246  
Old 03-09-2013, 09:34 AM
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Interesting! My epileptologist wanted me to take a "SAFE" drug-Lamictal. He said I was on some bad drugs before. I told him I didn't want to take drugs at all. He insisted, so I never went back. I'm glad I didn't listen to him. I can do that because I don't have real bad seizures like grand mal. Mine are annoying but I can live with them--complex partial seizures
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  #247  
Old 03-10-2013, 07:38 AM
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Pregablin gave me the worst side effects. I remember the second day of taking it I woke up screaming, I could see this terrifying face, almost a personification of epilepsy, it was mocking me and sticking it's tongue out at me, laughing as if to say, "I won't cure you're epilepsy for you, ha ha ha!!" it was awful, I e.mailed my neurologist, he got straight back to me and told me to stop taking it immediately, I just started and stopped taking Vimpat/Lacosamide, it gave me chest pains and a very dry mouth, no thanks, I think there are several new drugs on the market recently, so I guess I just have to keep trying. Keppra gives me incredible bursts of anger sometimes, but I've learnt to control it. I remember years and years ago, I was taking an anti-epileptic drug which caused acne and facial hair, I said to the doc, "That's ok doc, as you won't see my zits 'cos I'll have a beard!!" He just looked at me.......... Gotta keep laughing guys!! Lotsalove to you all Lainey XX
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  #248  
Old 03-10-2013, 11:21 AM
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Smile side effects


iHi Elaine: Over the years, I took dilantin, misoline, tegrotol, keppra, topamax and probably a couple of others and they all had side effects as you know, but yours was really bad. I hate the fact that we're guinea pigs. Do you know of any good books on biofeedback? I'd like to try that, since according to the chart, it has good results, but alas I must get my knowledge from books as it's more economical for me. Maybe someday I can attend a session. In the meantime, I'll pray and increase my knowledge on the subject by reading. Thanks! Mary1
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  #249  
Old 03-10-2013, 03:32 PM
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Hi Elaine. I've been on Pregabalin for a year and I don't like it: it gives me nightmares. I was put on it to take me off of Clonazepam. I liked Clonazepan but it's a benzo and the doctors don't like to keep you on them for long periods.

I have managed to stay on Clonazepam 0.5mg at noon - but the doctor would like me off of this too eventually.

Tegretol gives me tremours but with the Pregabalin it has helped to keep my seizures down to 3 a month.
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  #250  
Old 03-10-2013, 08:10 PM
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I agree with all the posts on here about Keppra, wow what a drug, makes you super pissed off all the time, if your not angry it makes you fly off the handle with the worst case of rage for no reason.....I was on a super duper amount of the stuff, i'm not anymore and I can cope with anything thrown at me now...
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  #251  
Old 03-10-2013, 09:53 PM
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Dilantin was the worst for me. Keppra was the second worst. Neither did jack for my seizures and I had horrible side effects and made me a zombie. I'm on Topamax now and my neurologist is talking about switching me to Lamictal but Sheesh I haaaaate switching meds! lol
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  #252  
Old 03-11-2013, 12:52 AM
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My wife took Lamictal when she was pregnant. It was the first time she changed her medications. While under Lamictal, she experienced 3 seizures each day. She felt dizzy and sleepy and she would experience seizure attacks while sleeping.
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  #253  
Old 03-11-2013, 12:56 AM
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Originally Posted by Elaine H View Post:
I remember years and years ago, I was taking an anti-epileptic drug which caused acne and facial hair, I said to the doc, "That's ok doc, as you won't see my zits 'cos I'll have a beard!!" He just looked at me.......... Gotta keep laughing guys!! Lotsalove to you all Lainey XX

even in the middle of a fight with the bf i can come on here and someone/thing makes me smile thanks lainey, that was funny!!
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  #254  
Old 03-11-2013, 12:59 AM
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Keppra works for me with a little bit of vimpat. I have no memory.This is not good for Alex's case. But it does show how stress affects your seizures. Love you guys
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  #255  
Old 03-11-2013, 08:53 AM
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What about vimpat? I'm going on it soon and I don't see it talked about what's it like?
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  #256  
Old 03-11-2013, 09:53 AM
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hi HOB,
after 10 days on vimpat i took myself off it, not a fan at all. i was edgy, emotional, and things just seemed to 'move too fast' all the time. like my brain couldn't catch up. as my epil. just put me on it as an 'in between' to get me through til surgery, i wasn't too concerned. then after the seizure unit she asked again, 'i'd really like you to give the vimpat another shot.' well, she's a great doc, and i'm the first one to say you gotta give meds a chance, so i went with it. this time we ramped more slowly, going up 2 weeks at a time rather than one, and that seemed to do the trick. keep that option in mind in case you don't care for the first run on it.
the drug itself is helpful, worth a shot i'd say. it lowers frequency of my partials somewhat, but if anything i'd say lessens the severity. other than one 2.5 minute complex partial last week in which my head actually started to shake, i've found it worth trying. i think that seizure was a bad mix of exhaustion and stress anyway.
i've had nothing for side effects either. Good luck, keep us posted!!!
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  #257  
Old 03-11-2013, 02:50 PM
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They have made me incredibly attractive and now everyone I see gives me bedroom eyes….

Why aren’t there good side effects? “May cause over developed intellect, weight loss accompanied with muscle growth, pearly white teeth and the respect and admiration of your peers. “
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  #258  
Old 03-11-2013, 02:55 PM
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Originally Posted by P-Funk View Post:
They have made me incredibly attractive and now everyone I see gives me bedroom eyes….
oh wow that's going to be such a bonus at the orgy

Originally Posted by P-Funk View Post:
Why aren’t there good side effects? “May cause over developed intellect, weight loss accompanied with muscle growth, pearly white teeth and the respect and admiration of your peers. “
can you imagine? all those with epilepsy would be the most gorgeous in the world!!
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  #259  
Old 03-13-2013, 08:50 PM
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qtowngirl THANK YOU that is a cool way to put it. Why not "good" side effects? I am also posting that i have had no noticeable sides from keppra and been good for years, seizure free. But now that I had a couple in a couple weeks and 'sustained' ones that would not stop. My doc kept me on keppra but added lamectal . very gradually we increased that until i was taking 400 mg twice a day with keppra, and ended up in the ER because the side effects from lamotrogine was so bad I almost could not walk. The ER doc said cut that new stuff in half for now and later this week i see the neurology doc.
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  #260  
Old 03-14-2013, 08:40 PM
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I've been on two anti seizure medications so far I've liked neither and am going to see a neurologist next month to try once more to get on something with at least reasonable side effects.

I was on Tegretol for all of my childhood and never cared for it. It made me so dead to the world I would fall asleep anywhere at school at home or just feel completely detached and unable to string even the most basic of thoughts together. It did wonders for my sense of humor I suppose I laughed at everything, but that was about it. I asked to be taken off of it many times, but despite all the craptastic side effects my doctor and parents kept me on it. Which was stupid because I was still having seizures.

Before being switched over I quit taking medication all together, but of course had a seizure. I thought anything had to be better then Tegretol I was wrong. I did like the fact for once in my life I felt like a human being I had feelings, a personality, and could focus and was able to make real friends for once in my life, but being someone who has seizures you unfortunately can't go off your meds and expect everything to just continue on and be good/seizure free.

When I was old enough to see a doctor on my own and had moved away from my mom and grandmother I was put on Keppra by another doctor. At first it seemed alright I mean I wasn't having seizures and I wasn't tired. Unfortunately by not tired I mean I was unable to sleep or concentrate. That didn't bother me at first I figured it was temporary and not something to be worried about then I started having problems with my mood and weight. I went from very bubbly, happy, and not overly thin, but not overweight to feeling angry or extremely depressed for no good reason, put on weight, and found it hard to work out at the gym or go running like I used to which didn't help. I brought this up to my doctor and asked to be put on something else and he insisted it was a bad idea and I should just stay on Keppra because after three years those side effects are obviously temporary. That makes so much sense -_- My speech and memory are also now just horrible. I didn't realize until I moved in with my boyfriend and was recently being trained for a new job. I can't remember anything and I seem to be having more complex partials.

I live in a new state now and I'm pretty excited about seeing a Neurologist who's educated and can actually help me and educate me because other then having medication thrown at me and being told I have a cleft of some sort in my brain I have no sort of knowledge of what caused my epilepsy.
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