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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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Old 04-16-2016, 06:18 AM
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Neurontin caused me to have absence status seizures where I would be out of it for 30 min. to 3 hrs. it was then I found out on NBC Dateline that this drug can sometimes trigger seizures for people and they were doing off market labeling with the drug. I know the drug co. got into a lot of trouble and they were sued for millions. Wishing all of you well and May God Bless You!

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Old 04-26-2016, 04:45 AM
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It's hard to say with these drugs, as I'm currently taking five different anti-epileptic drug's at once, six when I'm going through a bad Cluster.I have mentioned this on CWE before, but I do sometimes enjoy the kick I get from my drugs, but don't get it every day, I think it depends if I'm hungry, feeling blue, tired. They mainly all make me wobble about, see double and feel as high as a kite, before falling asleep so I think if I was back at work I would have to wait until I got home before taking them.
I hope everyone is well and fighting their problems with a positive outlook. X
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Old 04-27-2016, 08:11 AM
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Voted Lamictal, because it gave me a rash, which is kind of dangerous as my neurologist explained to me.
Keppra is right next to it. With Tegretol, I was basically only sleepy and kind of depressed after a few years of consumption. I am three weeks in with Keppra (for the first time) and I am going crazy all over the place - headaches, dizziness, mood swings, anger, feeling like floating (don't know how to explain this), nausea, insomnia...
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Old 05-09-2016, 01:08 PM
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Why is lamactcal rash dangerous.
I found tegratol awful epilim made me jerky shaky phynotoin felt like lump of lard
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Old 05-09-2016, 05:08 PM
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Not sure about why, but that's what my neurologist told me and warned me about.
When I try googling it I get the information on serious rashes that require hospitalization, so I guess stopping treatment is the best solution in order to prevent rash from developing and becoming serious.
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Old 09-26-2016, 02:05 PM
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Keppra - rage and insomnia
Depakote - wanting to eat al the time and lethargic
Lamictal - Abdominal pains, insomnia and more seizures
Zonegran - Night terrors, negative thoughts, depression and aggression
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Old 09-28-2016, 12:34 PM
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Oh wow. With a TBI I tend to run risk of anger outbursts. Keppra made that routine. Embarrassing in public. And still seizures at least every two weeks keppra took away the labido and creativity. As an artist, I told my doc I'd sooner die. So is it all better now? No depakote is helping with minimal sideeffects . But not out of the woods yet. I've had a few big tonic clonic seizures. Since July when I started depakote. They always happen when I did not use mmj .my doc explanation of do not smoke. Best way is vape. I do not use tobacco so I had no problem idea you could vape pot. So far I never seize if I use mmj. Strange ?
The purpose of life is to live it. People keep getting lost in trying to achieve something great and not living. -Alan Watts
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Old 09-28-2016, 01:28 PM
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I Can't Say That Any Of The Meds Have Had Negative Side-Effects For Me!

I have never taken an anti-epileptic drug that caused side-effects for me!
I know that many people have bad side-effects so I am very lucky that way!
The fact that some people may have problems with a med doesn't mean that someone else should be fearful of taking that med! This is because each med is going to work differently in each body!
A person's metabolism is what determines how successful a med may work for them!

Epilepsy doesn't control MY life, I DO!
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Old 09-28-2016, 02:21 PM
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I've been on meds (Dilantin and pheonobarb) for 38 yrs with no noticeable side effects until LONG TERM USE the &(I also take meds for Ulcerative Colitis).

After after about 25 yrs. I started to notice things on my body weren't working the same (erectile dysfunction, poor balance and gait, short term memory loss, and others) combined with my aging.

I wonder what the next 30 yrs will bring?
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.

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Old 06-28-2017, 09:15 AM
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I'm surprised at Tegretol being as high as Topamax. I lost 30lbs in 30 days AND significant amount of cognitive thinking skills to boot.

I have I suppose on Tegretol as well but not as quickly and have only gained weight and not lost any (40lbs) but the cognitive affects aren't as extreme as they were on Topamax. I've considered going back on it to at least lost the weight I've put on but I was so depressed with Topamax, losing that much brain functionality was devastating to me.

Keppra was the worst. I got Kepprage so bad both times I took it (I was pregnant both times which is why I was put on it, the second time I only lasted two weeks before I refused to take it again.

I was on vimpat for a while with no side effects, but it's expensive and my insurance didn't cover it(when I did have insurance )
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Old 06-30-2017, 02:17 PM
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Ugh, Depakote/Epilim! Lyrica is pretty shitty, but Depakote/Epilim pushed me to the point that even my father wanted me off it. I was on it along with Lamictal, Ativan, and Lyrica, and a few things for my other chronic illnesses, and I could not think at all. I thought it was the Lyrica that was messing me up, but as soon as I was off any form of valproate it was like night and day.
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Old 08-04-2017, 03:42 AM
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I thought I was the only one
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Old 08-04-2017, 04:51 AM
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The results make me laugh. A previous neurologist told me Depakote was the golden standard. I had a rare, but known side effect where the liver starts to produce ammonia as a byproduct of filtering depakote. I seized, ended up in the hospital, told them the depakote was making me feel sick, and they wanted to up my dose in the hospital. 2 minutes after the IV was in, I seized again and blacked out. They did blood work and my liver was failing.

I got the tegretol rash & seizure too. Lamictal made me zombie. Keppra made me super moody & increased my seizures.. zonisamide is the only thing that's made a big difference outside of trying cannabis. I lost a lot of weight from it tho.. from 180 to 125, with no diet. There always seems to be a trade.
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Old 08-04-2017, 08:20 AM
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Re meds side effects, after many years on Keppra, rowing with family and friends, and being the total bitch from Hell, last year Keppra was replaced with a new med called Briviact. This med has completely changed my life, I'm a lot more positive, less emotional, lost 16lbs, got my appetite back and eat well and take regular exercise. I have just sold and bought a new house without any help from anyone. most importantly, very early days yet, but I've been seizure free for nearly four months with not even an aura.
Side effects from meds are often worse than the seizures themselves, I find it's essential for me to stick to a regular daily routine, shower, dress and eat a healthy breakfast, and my pedometer has really made me aware of the lack of exercise I was getting before. I now walk 6,000 steps or more a day, I socialise more and when I get moved into my new house, shall try again for paid employment, I can't stand being home alone, it doesn't help my seizures.
I hope everyone is doing ok and as determined as I am to get a better quality of life with Epilepsy.
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Old 08-16-2017, 12:58 PM
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Tegretol is probably the one that gets my vote--but Keppra is a close second. Tegretol caused a rash all over my body so severe that I was "like a fish out of water", my temperature was 104, & I lost 85%+ of my hair!
Keppra caused cramps so severe that I was doubled over in pain.
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Old 08-18-2017, 09:17 PM
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In answer to Seagulls question about the Lamotrigine rash:

Kanner, A. (2005). Lamotrigine-induced Rash: Can We Stop Worrying?. Epilepsy Currents, 5(5), pp.190-191.

To be honest the risk of the rash has decreased since a slower titration for Lamotrigine has been implemented.
The administration of Lamotrigine as an adjunct therapy to valproic acid has been identified as one of the risk factors for the rash. It is not the result of a pharmacodynamic interaction, but rather from a pharmacokinetic interaction between the two anti-epileptic drugs. Valproic acid inhibits the clearance of Lamotrigine and, co-administration results in higher Lamotrigine serum concentrations. Failure to adjust the dosage of Lamotrigine to the decreased metabolic rate, which is about 50% lower, increases the risk of rash.

However I was on the combo for 20 years and nothing happened. :-)
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Old 08-21-2017, 10:45 AM
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This poll could have used a secondary question asking which drug(s) has the participant been prescribed. Then the numbers could be compared to see if the drugs with the highest percentage of side effects were a result of being prescribed more than others or if their rate of side effects was higher than their rate of prescription.
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Old 08-21-2017, 11:35 AM
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Or to be perfectly honest, the dosage of the anti-epileptic drug that the voters were prescribed as many side effects are dosage dependant.
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Old 09-23-2017, 09:42 AM
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I have started seeing a psychiatric type of counselor in order to go over some things (post-surgical for one thing... that's a different topic - BUT one thing I brought up with her yesterday that has been seeming like a sort of slow-explosion line of thinking is that "why the f*** does my medical record state (and that I seem to automatically bring it up at Dr. appointments) "allergies: morphine & Keppra (levetiracetum I was taking)... and in a huge way I have no idea WHY. I don't even recall having had morphine.
I've been having lines of disgusting lines of thinking that something horrible had happened - it feels like it is strewn lines of thread thoughts that have been exploded throughout my mind.
I've been possessed with the feeling I need to find out everything I can about it. I have feelings that completely horrendous things might have happened that I've been "hypnotized" in some way in order to have it actually strewn throughout my mind... I'm suspicious also that that might be a reason why I'm "allergic to morphine", that morphine might actually be some sort of +/- ion light switch in the brain in some way, in order to make thought processes have on/off methods.
I'm possessed to figure out why (as well as "kepprage" that I've heard of) at this point - it's a thought process I can't stop, not to mention often horrible feeling dreams... (oh not to forget an ear ringing in suspicious might be from falling or something "is that related?" possessive thinking...)
I'm typing this on my phone so it might be a bit doubled because I can't quite see everything
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Old 10-11-2017, 09:51 AM
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My daughter is fairly new to levetiracetam, around 6 moynths and aside from the occasional crying spell when the dose is initially upped and slight impatience she sometimes feels (never been a moaner or angry person) she says she's quite okay with the drug, which seems to be limiting her tonic clonic's to the occasional partial. She's on a high dose - 2,750mgs daily - but so far hasn't had any real negative side effects. She doesn't read the leaflets in medicine boxes because she doesn't want to 'talk herself into reactions' but I read them and keep an eye out.
To date this drug has been pretty good for her personally and as everyone is different reaction wise I hope that gives anyone about to start taking it a positive outlook.
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