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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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  #81  
Old 01-26-2009, 08:39 PM
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After being on numerous anti-epileptic drugs I found that a lot of the issues being anger,confusion,trouble holding memories of instructions and several other problems were worse when over medicated. When meds were cut I was able to focus better just to name 1 thing. Too many meds and not just one certain one I believe plays a malor roll in the side affects. By the way the worse was Topamax. It contributed if not caused the Deep Vein Thrumbosis I suffered.

Last edited by KARDSHARQUE; 01-26-2009 at 08:43 PM. Reason: left out last sentence.
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  #82  
Old 01-26-2009, 10:59 PM
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I am currently taking Keppra, Lamictal and Depakote. My memory is horrible (I can't even remember which weddings I have been too), and I tend to have a hard time staying awake at work.
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  #83  
Old 01-26-2009, 11:09 PM
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I am currently detoxing off of Celontin. I had an allergic reaction. Probably going back into the hospital tomorrow.Meanest drug I ever encountered.
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  #84  
Old 01-27-2009, 02:24 PM
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I'm starting to have more simple partials around my ms.. I want to stay on tegretol though.. "keppra lamical pheno dilantion" no thanks! Ive had to take thoes meds and they made me sick" Ive had some trouble with my eyes, being tired and remembering things sometimes but thats about it.. the simple partials could be cousing the memory problems I think....

hugs to everyone

Lorrie
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  #85  
Old 01-27-2009, 03:20 PM
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I have tried several different anti-epileptic drugs and have only suffered side effects on Ethosuximide, needless to say I didn't stay on this med very long. It was a really weird feeling, my memory is normally very sharp, but whilst on this med, I couldn't even remember what I had for dinner the night before.
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  #86  
Old 02-24-2009, 03:32 PM
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Depakote high levels??


I wonder how high my drug level is comparatively. I am on 2000mg/day and the side effects I've noticed is exhaustion, tremors, and weight gain - well I think the drugs have something to do with it, my husband won't ever acknowledge that the amount of drugs I take may play a part. Thoughts??
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  #87  
Old 02-24-2009, 06:38 PM
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Depakote is nasty and I am on extended release now. Only 500 mlgs. It works fine. They want me to take more in less than a week. Nope , this works fine. Depakote can mess with your memory. and weight. I was on it high levels in high school and I could not concentrate.
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  #88  
Old 02-24-2009, 08:00 PM
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My daughter was diagnosed when she was 10 too. Any insight you can give me would be great. I cannot imagine what she is going through, all I know is that drugs are messing her up.
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  #89  
Old 02-24-2009, 08:40 PM
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I remember. 10 years old. I got it with the chicken pox. I was so emotional because of the meds. And back then they did not tell parents anything. My mom used to tell the Dr. that diet had a lot to do with it. They would just laugh at her. Sometimes my mom and I just hugged and didn't say anything. I lost my temper a lot. Now here I am 44 in April with an 11 year old boy with epilepsy as well. .
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  #90  
Old 03-18-2009, 11:14 PM
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Unhappy


Ok I have edited the poll to add
Lamictal on there .. since it has
now given me bad side effects!

*sigh*

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  #91  
Old 03-19-2009, 09:39 AM
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I'm sorry Brain. That one was not a good one for me either.
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  #92  
Old 04-24-2009, 07:43 AM
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When I was taking too much lamictal, it used to give me horrible side effects. I had double vision, could hardly walk straight or see straight. I felt like my head was spinning. Sometimes I'd have to crawl to go anywhere. I couldn't even focus enough to read a book. If I put my hand over one eye, sometimes I could read things, but that was it. I'd just lay on the bed, shut my eyes and wait for the side effects to wear off, after about an hour or so. My "former" neurologist had me on 1000mg daily though. I had to take it 5 times a day, just so I could stand up basically. I take 400mg now and have no problems, except maybe insonmnia. But I think every anti-epileptic drug I've ever taken has done that, so I've just learned to live with that.

Pheno was still the worst for me though because those side effects were constant. They didn't subside after a few hours.

On pheno, I had trouble learning. When I was in 1st and 2nd grade, I was put in learning disabled classes. I stuttered so bad, I could hardly say hello. There were certain words, I just couldn't say. It was usually words that had two consanants together, like an "st" sound, "sh" sound, etc. I had a neighbor named Steve and I couldn't say his name. I got stuck on the "st" sound. All I could get out was "s". The school put me in speech therapy too, even though my parents told them it was my meds.

As soon as I got off of pheno, the side effects went away. I was no longer in speech therapy, no stuttering or anything and I was transferred back to my home school and put in regular classes again.
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  #93  
Old 05-11-2009, 11:30 AM
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Ive only been on Keppra and topamax. But it would go in this order.
Keppra- i definitely experience kepprage. Im ALWAYS irritable.
Topamax- The tingling of the feet and hands and I can't drink carbonation because it tastes like metal. Hmm.
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  #94  
Old 05-12-2009, 10:16 AM
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I HATE every drug my daughter has been on:

1st try: Keppra (monotherapy-failed)--> EXTREME RAGE very scary to see a 4 year old becoming psychotic, especially when her brother's only 2 - usually the world's sweetest child so we totally blame the drug; ALSO hyperactivity & sleep/insomnia issues

2nd try: Lamictal (monotherapy-failed)---> Got a rash that almost left a scar; better mood but no seizure control & cognitive problems; also sleep/insomnia issues

3rd try: Depakote Sprinkles & IV Valproic Acid (Lamictal adjunct-failed)---> Didn't last at all due to non-convulsive status & possible paradoxical effects/interactions with Lamictal -- also had some rash trouble

4th try: Dilantin (Keppra adjunct-weaned)---> AWFUL med!! Made her drunk/reeling/moody, clouded her intelligence & personality, totally bungled her motors skills, ruined her sleep with even more thrashing around at night, and of course, had to have rash issues.

5th try: Keppra (again)---> Moods helped by B6 but not eradicated, still has rage spells hoping to wean SOON thank God for the diet!!

6th Try: Klonopin (Keppra adjunct/PRN)---> Not as bad as the others but turned her into a zombie, flat eyes, regressed intelligence, no smiles

7th Try: Banzel (Keppra adjunct)---> Newbie drug for Lennox-Gastaut Syndrome. Can't tell any stand out side effects, just did nothing for seizure control.

Sorry if this is negative, but I've seen the same negative effects in so many other people taking these anti-epileptic drug's. Doctors/public should be more aware of the problems they cause!!

Kristi

Last edited by katie's mom; 05-12-2009 at 10:22 AM.
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  #95  
Old 05-12-2009, 04:07 PM
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I'm on Trileptal and Klonipin, so I can only talk about those. The Klonipin is really for anxiety and I love that one. The Trileptal I can definitely do without. It makes me extremely drowsy. My doctor & everyone else says I'll get use to it, but I haven't(8 months now). Does anyone live in medical mj friendly states and does anyone treat with that? If you do use for treatment, do you work and how does that go?
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  #96  
Old 05-13-2009, 07:28 PM
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Hey I have been on a bunch of drugs including trileptal and trust me tiredness is nothing compared to some of the other side effects. It is really annoying, but becoming a coffee addict is way better than trying to committ suicide while on Keppra and not even being able to walk and throwing up every two hours on Lamictal.
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  #97  
Old 05-13-2009, 07:42 PM
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What did they use the Banzel for? My son's Dr. has given me info on it and given me the choice. He has been a child epileptologist for 20 years and he sais that he only has 3 children on it. It works for those three children, but he has made it a team effort.
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  #98  
Old 05-13-2009, 10:01 PM
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Banzel is so new (FDA approved Nov 2008 ) that Walgreen's supplier didn't even carry it when I first got the script. I had to call almost every pharmacy in my county and even then had to wait a few days before I could get it.

It was originally designed for Lennox-Gastaut Syndrome patients, but since my daughter's dx of Doose Syndrome has similar seizure behavior, our neurologist thought it might fit her better than the older ones we'd tried. Katie is our pediatric neurologist's 2nd Banzel patient so I'd say it's still a bit of a guinea pig drug for most practices. They had a thread on the epilepsy foundation Web site about how effective Banzel has been for the parents' kids and although there were more failure stories than success ones, considering that most of the Banzel patients had Lennox-Gastaut Syndrome or otherwise intractable seizures that is still fairly encouraging. I still think that the stats favor better results with a diet-based approach for the intractable cases. PM me if you ever want to talk more about Lennox-Gastaut Syndrome treatment options.

Last edited by katie's mom; 05-13-2009 at 10:04 PM.
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  #99  
Old 05-19-2009, 09:34 PM
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I love the diet idea. All these meds and surgeries and every kind of seizure has effected me. I'm just mean and don't feel well any more. I want to go home.
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  #100  
Old 05-25-2009, 01:59 PM
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Hello everyone-
I have been on Tegretol when I was younger but was extremley tired and sleepy- so was taken off of it during school. Then started it back up when I was 23 but became depressed and was frightened to death of death. I could not get calmed down at all and I changed over to Dilantin which had no effect at all to my seizures and it didn't have any side-effects either. I then was changed back over to Keppra and Tegretol XR together and was not harassed by the mental issues and fear like when I was on Tegretol XR 600mg by itself. I thought I was loosing my mind and I was still having to go to classes in college that way. I was thinking of some odd stuff- never to hurt myself but I would not be able to concentrate for long at all.. I was being tortured in my opinion and I don't know why. So I told my neurologist about it and we changed over to Keppra 3000mg plus Tegretol XR 600mg.
If I try to lower Tegretol XR on my own then I get worse seizures and drop attacks.. so I don't know how I'm going to get off of it unless I have three meds like I had to before while changing to Keppra and Tegretol from Dilantin.
Anyways- I am thankful for meds helping me compared to how it used to be without them.. 2-20 complex partial seizures in a day plus I think I am having absence seizures like i didnt when i was little till i was 13 when we thought they changed to complex partial seizures.. My friend Rachel has been noticing them while I am not able to like I can with complex partial seizures with auras. So have some things to talk with new neurologist soon.
Everyone take care and be safe..
-Crystal and her guide, Umbro
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