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View Poll Results: Which AEDs gave you the worst side effects?
Depakote / Valproate/Valproic Acid/Divalproex Sodium 69 27.49%
Dilantin / Phenytoin 49 19.52%
Keppra / Levetiracetam 69 27.49%
Lamictal / Lamotrigine 43 17.13%
Neurontin / Gabapentin 17 6.77%
Phenobarbital 29 11.55%
Tegretol / Carbamazepine 38 15.14%
Topamax / Topiramate 45 17.93%
Trileptal / Oxcarbazepine 18 7.17%
Zonegran / Zonisamide 14 5.58%
Multiple Choice Poll. Voters: 251. You may not vote on this poll

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  #121  
Old 08-13-2010, 08:04 PM
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Well, I have changed my mind for all of them. It is now Keppra. It is the #1 drug used for epilepsy that causes suicide. My Dr. upped my Keppra before it was supposed to be changed. I have been so depressed for 2 months now. Please excuse me, I have the flu to. So I went to my computer and typed in I want to commit suicide and keppra and it told me that. I was so depressed. I had an appointment with my epileptologist the next day. They wanted me to stay in the hospital. I just had to convince them I was safe. I hate keppra. They are taking me off slowly, I already feel much better , and depakote and topamax, and exercise and lots of vitamins here I come.
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  #122  
Old 08-16-2010, 11:46 AM
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Dilantin


Been on the stuff for a little over 30 years. My seizures are "controlled". My long term side effect would be my Thyroid is tryin' to bite the dust. Prior to 2003, my side effects were mild in comparison to some on here. My only other med. was Pheno, 1968-1971. I have been anxious I think since birth. Now, I am tired and have very few days when my energy level is up. My medication level borders on theraputic. Am not upping my dose, and need to have a come to Jesus meeting with a neurologist., (right now I just have a P.C. doc.) I am sure they would not change my anti-epileptic drug since I have control. I am battling this subject in my own mind right now, since I have trouble sleeping, anxiety, and some depression. I exercise, but struggle to do so for feeling like the walking dead!
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  #123  
Old 08-16-2010, 03:07 PM
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I voted Keppra and Tegretol,they're currently what I am taking and I've had some bad side effects with them.

But Epilim Chrono was THE WORST one I have been on.Terrible side-effects and had to be taken off of them.
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  #124  
Old 12-30-2010, 07:00 PM
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All of them


Have given me some issues

The worst being the Lamictal XR. It gives me crashing headaches, shaking, brain fog, depression, and a host of other side effects.

Topamax: There's a reason they call it "Dope-a-max"--enough said.

Keppra: Made me moody at a higher dose, but I think this is under control now.
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  #125  
Old 12-30-2010, 10:34 PM
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i just started topamax and its my first but it sux. it kills me. brain fog, exhaustion, my hair is falling out, my FINGERS WON'T STOP TINGLING AND PINS AND NEEDLES HURT!!! and i have become stupid in school. i also get leg cramps, dehydration- but it sort of controls seizures a little so far i think maybe. but im not sure lol
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  #126  
Old 12-30-2010, 11:14 PM
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I hate keppra, it makes me so moody. But I am on a lot less of it now and it controls my szs very well. Dilantin was a pain in the *** . Vimpat makes me tired, but it works well.
zonegran just made me have seizures.Oh, and Vimpat makes me forget words more often, but I don't have as many s. So really I remember much more.
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  #127  
Old 12-31-2010, 03:45 AM
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I'm one of the more fortunate ones. I started generic keppra at the start of the month and it's been wonderful. It's my first anti-epileptic drug so when I first started taking it I was really moody but I think that's because I was just diagnosed and all the natural feelings came with the diagnoses. I get tired after I take it but it usually goes away.
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  #128  
Old 12-31-2010, 05:44 AM
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I'm glad that Keppra works for you. It's a good drug if it doesn't bring you down.
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  #129  
Old 01-01-2011, 04:03 PM
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Well I had to vote on this one.

Dilantin gave me a rash. I voted for Phenobarbitol because there was no mysoline on the list. Mysoline metabolises to pheno. (I think). On the pheno. I crawled up into my Mom's bed and couldn't do anything but cry, including not getting up. Was then put on Mysoline and struggled with horrible depression for years and years and years. Anyone else been on that carp?
Tegregol was ok except my wbc kept going down and I couldn't even get over a cold for months. I seem to be having more problems with the Trileptal. Slight dizziness. Who can say which one is worse. Symptoms we can't live with, I guess.
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  #130  
Old 01-07-2011, 03:31 PM
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Originally Posted by stilldancing_98 View Post:
I hate keppra, it makes me so moody. But I am on a lot less of it now and it controls my szs very well. Dilantin was a pain in the *** . Vimpat makes me tired, but it works well.
zonegran just made me have seizures.Oh, and Vimpat makes me forget words more often, but I don't have as many s. So really I remember much more.
if you take a b6 with keppra it makes moddiness a LOT better,... im on it and the b6 works miracles wit keppra but i am really exhausted but ive only been on it for a little while. but the b6 rly helps
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  #131  
Old 01-07-2011, 05:37 PM
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I have some , I will start taking it again. And thanks a lot.
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  #132  
Old 01-07-2011, 08:05 PM
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no problem
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  #133  
Old 01-08-2011, 03:39 PM
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I was on Neurontin for 12 months but it gave me the most problems out of all the anti-epileptic drugs I've been on. I was on a high doesage of Neurontin but it didn't do much to help control my seizures. I was extremely tired & had terrible mood swings (could either burst into tears or snap at someone at the drop of a pin). I used to get annoyed with little things people would do which usually wouldn't bother me.

It's been 2 months since the specialist took me of the Neurontin & I have noticed changes. I have more energy & don't get so tired (only having a nap if I'm not well or really bored). I also don't get so moody & back to being happy & bubbly.

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  #134  
Old 01-29-2011, 06:59 AM
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I think I answered this a long time ago before switching from keppra to lamictal. I would now have to say keppra was worse short term. Dilantin is the worst long term.
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  #135  
Old 02-06-2011, 12:41 AM
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I want to revise my vote. I vote Lamictal combined with Diamox. Emphasis on DIAMOX. Since I started taking that stuff it's been one big barf-o-rama around here. That's the bad news. Here's the good news. Since I havn't kept food down in over 3 weeks or so, I've lost a good amount of weight. Let's stop now. Any time. Please.

And the taste of food is even worse than when I was taking topamax. And I have a rash. And heart palpitations. And it's hard to breathe. And I'm exhausted. And pins and needles so bad it's mindblowing. The doc took me off the diamox this morning. Good riddance.

I'd just throw it down the drain, but that's too good for it. It deserves to be set on fire and shot into space.
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  #136  
Old 02-07-2011, 12:36 PM
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Dear Endless,

Don't drink coffee. It will worsen and or bring about nausea along with causing tension which can also trigger seizures. Also, make sure to drink 3-5 glasses of (purified) water but don't over do it. Stay away from acidic drinks and nibble on small bits of healthy food (bananas, veggies, nuts) throughout the day so to keep something in you.
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  #137  
Old 02-07-2011, 01:07 PM
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Laughing... I lead such a clean life now. No alcohol, no caffeine, no chocolate. Not even a fraction of an ounce.

I don't smoke, don't get mad much, not really into envy, etc. I need a vice that is seizure-compatible. Any suggestions? Oh, wait! I looked at the list and I think I'll go for gluttony.

http://en.wikipedia.org/wiki/Vice
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  #138  
Old 02-07-2011, 01:29 PM
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Yes, I can recommend a seizure-compatable vice however, this needs to be kept clean. Wink wink, need I say no more? Oh, and a nap afterwards does the mind and body good too!
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  #139  
Old 02-10-2011, 05:52 AM
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Valproic acid- throwing up when started on it or increased the dose, hair loss, slight weight gain

Keppra (now)- VERY moody and aggressive... no appetite ( I lost almost 3kg over 2.5 weeks of taking it), changing from hyperactive to lethargic within a few seconds, everyday headaches that usually start about 2 hours after taking the dose... mild flu-like symptoms. But I am yet to try the B vitamins and my neurologist says that the side effects should ease up in a few weeks so I am really hoping for that!
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  #140  
Old 02-22-2011, 04:29 PM
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Which one do you think would be the best drug for me? I'm definitely have absence seizures, possibly atonic seizures, too.

I know you're not doctors, but could you give me some advice of what drug would be best for someone who ALREADY has severe insomnia, severe anxiety, severe mood swings, and already retains water and is losing hair?

I LOVE klonopin...was on it for anxiety for years...but I never again want to be treated like a doctor-hopping benzo-seeking "drug addict"...that is what is written in my records. Or should I just suck it up and happily swallow my benzos again, only for seizures this time instead of anxiety?
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