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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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  #321  
Old 07-29-2013, 01:28 PM
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Originally Posted by QueenieKP View Post:
Understand your apprehension, but in a wider context this thread is about our worst experiences.
Trust me, via the medications I have taken in 18 years, the problems I am having is with carbamazepine right now, the worst I have had with many different medications since all this started. I really wish I could just stop taking it until my neurologist appointment makes it to me... forget the doctors appointment tomorrow, he can't do anything except increase or decrease my dosage.

Till then I get to keep playing with increased seizures, increased stabbing head pains, increased tinnitus, increased light headed and dizziness.

Strange how a medication can work for a period of time, only for the body one day to get used to it, then the un-fun game begins and we get to play until we connect with the one who chooses which med we play with next.
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  #322  
Old 08-09-2013, 09:43 AM
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Question regarding side effects of meds. How do you know when you have bad feelings if it is because of the meds or is it because of the issues you are going thru?

My seizures in past since I was 19 have been pretty much controlled with 300 mg a day of Dilantin as long as I would make sure I took it. Even at times have been known to miss a day and have no problems. 6 mths ago started having seizures even though I took it. In ER a couple of times they would say level was low. Why I do not know. My PCP wanted me to take 400 mg. was having really bad issues with anxiety and sleeping. neurologist trying to switch me over to Keppra. I have had problems with depression anxiety and want to do nothing but sleep now. Saw a counselor for 3 sessions. All she seemed to want me to do is get on med for depression and anxiety. The thought alone of putting another pill in my mouth makes me feel so sick almost sends me to RR...(sorry for being so graphic). Had appt with neurologist yesterday. Told her I didn't know if my feelings were from meds or just trying to deal with the so called issue at hand. Had seizure during EEG on 7/1. I don't know why when I do have one it seems to take me a couple of months to get over it and to forget about it. I really don't know how the people on here that deal with them on a daily, weekly, basis get thru it.
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  #323  
Old 08-09-2013, 03:27 PM
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Honestly it's tough. In the catergory of how long is a piece of string. My seizures were gone and off meds for 10 years, but I had a nervous breakdown in 2007, a psychotic episode 2010. Since being back on epilepsy meds
I have had recurring mental health issues. I wonder long and hard if it's me, the meds of a combination of the both. People with epilepsy have higher co-morbidity for conditions from
Bi Polar to depression to anxiety.

My CPN said to me on Thursday some people are just very pharmacologically sensitive. So it's why we never know how a drug will effect us until we try and for (perhaps) a lot of us it feels such a med-a-go-round.

Q
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  #324  
Old 08-09-2013, 06:24 PM
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The worst ever has to have been Tegratol with Epilim, closely followed by Phenytoin (which is my best one yet for seizure control)
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  #325  
Old 11-09-2013, 11:41 AM
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I've only been on keppra and lamictal. For me ...keppra because it STOPPED WORKING after 4 years.
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  #326  
Old 11-09-2013, 01:12 PM
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For me Keppra because I was completely different person after taking it, I had horror nightmares which never completely disappear even after stop taking it, I had suicidal thoughts and my psychics were so bad that times.....I was hysterical and very aggressive. Also extremely honest (which is not always good, trust me). But on the other hand from the epilepsy side I felt better.
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  #327  
Old 11-09-2013, 09:55 PM
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I guess everyone's brain chemistry is a little different. Dilantin failed to control my seizures and turned me into drowsy, forgetful zombie. I've heard horrible things from friends who've been on Keppra: hallucinations, etc. That's certainly the one that produces the scariest stories.

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  #328  
Old 11-12-2013, 06:14 PM
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vimpat,keppra,Gabatril,DepakoteLamictal .I'm allergic to those
and of course Dilantin that made me forget everything.
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  #329  
Old 02-19-2014, 03:47 AM
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Now this is a poll worth having. I'm beginning to get the idea that some meds really do affect more people badly than others. I'm especially surprised that lamictin got such high stats and neurontin such low ones. I figured it'd be the other way around.
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  #330  
Old 02-19-2014, 04:06 PM
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Got my blood test results back from neurologist nurse today, trileptal (1200mgs daily) level, lamictal (600mgs daily) level Topamax (200mgs daily) Not level. Topamax was 400mgs a couple weeks ago but he cut in half for me as I was only awake about 6 out of 24 hrs. on it. I wonder if I was on it a while longer (I had only been on it maybe 4 weeks) if I would have stabilized better on it. I just know I have seemed to have more problems since he cut it down for me. I don't know if he will call back later and add something or if he will wait until next week. Nurse said she was going to be talking to him. Oh, she also said my EKG came out good and showed all was good. They had done one that they had wondered about awhile back.
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  #331  
Old 02-19-2014, 04:22 PM
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I'm glad you're working actively with your neurologist doc to find the right meds, Penny. It's a challenge. I'm still struggling with drowsiness versus seizure control, myself, but I usually manage 12-14 hours of wakefulness a day. (With maybe one day lost to sleep per weekend.) Good luck finding the right treatment regimen, Penny.

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  #332  
Old 02-19-2014, 04:25 PM
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Tegretol= on it for 20+ years, never noticed side effects other than some weight gain, but also doesn't work anymore
Klonopin = gave me myclonics that near shook my fillings loose--i probably have an issue with those anyway but was shaking, jerking and jiggling all night long on this drug
Topamax = all the regular stuff, plus I can't sleep at all while titrating and get all those lovely suicidal ideations. Haven't noticed any reduction in seizures so guess we will see what's next!
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  #333  
Old 02-19-2014, 04:50 PM
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Scary stuff, Lindsay. Hope you find something, soon. I hate being at the mercy of seizures. Zonisamide is the first drug that's worked for my secondary generalized seizures, albeit with some sleepiness. Of course, all of our brains are different ...

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  #334  
Old 02-26-2014, 03:36 PM
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I've been on Dilantin for the longest time(over 35 years) and the most noticeable side effects have been dental issues, short-term memory, concentration, and fatigue. Waterpik water flosser has really helped with keeping gums healthy and clean, I wish I had one a long time ago. I've been on Topamax for about the last 12 years as well, and recently have noticed a lot of side effects and serious concern - anxiety, depression, mood changes, trouble breathing, dizziness and heat sensitivity. It's definitely time to make an appointment with my neurologist. I'm not looking forward to another possible med change and everything that entails, but it's for the greater good.
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  #335  
Old 03-05-2014, 02:24 PM
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I just noticed the Poll Results and I find it entertaining that Keppra has the highest percentage of worst side effects. This is the drug iv'e been on since I was about 13ish.

The worst for me personally was the Topamax and Potiga.
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  #336  
Old 04-09-2014, 01:51 AM
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does anyone know if you develop Tinnitus after you quit taking potigia ?
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  #337  
Old 04-09-2014, 03:50 PM
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The results of poll are extremely interesting! But another factor could also be taken into consideration: which drugs each person is taking. For example, there could be one very popular drug used by millions, with a hundred bad side effects. And another drug taken by a hundred people, also with a hundred bad side effects. (Worst case scenario, I hope there's nothing that bad being prescribed)
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  #338  
Old 04-09-2014, 07:12 PM
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Im titrating off keppra right now. Was on it 6 weeks and wow were they horrible. I will be totally of it this coming Monday. neurologist is upping my trileptal from 1200mgs to 1500mgs daily. I asked him if we could do it since I am doing so well on it now. It was horrible when my last neurologist upped my trileptal from 900mgs to 2400mgs all at once. I ended up being taken to the hospital after I had a grand Mal in the shower. I am still on lamictal 600mgs daily too. I do well on it.

The ones I havnt done well on are:

Vimpat, keppra, Topamax

Did not do well on these either when used as a mood stabilizer for bipolar 1 several years ago, so I wont use them for Epilepsy either:

Gabitral, Neurontin, Depakote, zonagran
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  #339  
Old 06-17-2014, 06:08 AM
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I'm on Keppra, Topamax and Vimpat not sure about the Vimpat yet but with the topamax I am pretty sure it caused me some pretty bad road rage or increased the road rage of the keppra because I don't think I had it without the topamax but with the vimpat it went away. Some positive things about the topamax was I lost 45 lbs....Other than that. Still having seizures.

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  #340  
Old 06-18-2014, 01:33 PM
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Lamictal seems to be the only that really likes me. And fortunately, it also works pretty well. I've also been on Keppra, Depakote, and Vimpat. I didn't mind the side effects of Vimpat as much, but it also didn't seem to be doing much.
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