Which AEDs give you the worst side effects?

Which AEDs gave you the worst side effects?

  • Depakote / Valproate/Valproic Acid/Divalproex Sodium

    Votes: 108 25.4%
  • Dilantin / Phenytoin

    Votes: 84 19.8%
  • Keppra / Levetiracetam

    Votes: 133 31.3%
  • Lamictal / Lamotrigine

    Votes: 81 19.1%
  • Neurontin / Gabapentin

    Votes: 30 7.1%
  • Phenobarbital

    Votes: 41 9.6%
  • Tegretol / Carbamazepine

    Votes: 78 18.4%
  • Topamax / Topiramate

    Votes: 79 18.6%
  • Trileptal / Oxcarbazepine

    Votes: 37 8.7%
  • Zonegran / Zonisamide

    Votes: 35 8.2%

  • Total voters
    425

Crash

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Ha,Crazychick your nuero must be like mine.Mine is on a six month sabbatical so i have to see my local gp instead,although i get more sense there.At least he speaks in plain bloody english instead off riddles..........who knows perhaps the nuero is of on holiday at the drug companys expense.Must of reached her quota! Tell ya,she better not come back with a tan!!!
 

Janus

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Crazychick, That sucks! I know a 'clinical pharmacist' that works with docs AND patients together. He told me that sometimes docs don't get that, in some cases, a smaller dose can do more than a larger. And/or 2 meds at smaller doses. But when they do not get back to you they should be barred from practice! I hope things get better for you.
 
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Thanks crash and janus, my first neuro was exactly the same, wouldnt answer my questions wasnt bothered if i had seizures, they transfered me to this one av got now as i complained and this one is meant to be the best one haha yeah right my god if this ones the best i would hate to see the worst. Its like they are just not bothered couldnt care less im having seizures and who knows what damage its doing inside. I had a seizure yesterday morning and i rang to tell my neuro as epilepsy nurse is away, her secretary ddint seem interested in the slightest, av bin waitin a week for neuro to get back to me as the nurse said it sounded serious and was meant to of sent my neuro a email, it cant be that serious can it if shes not bothering to get back to me. The secretary is meant to of left her notes on her desk but still nothing. I tried my local gp who just kept saying he didnt know and it was best to go to my neuro whos useless to.
 

Crash

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Crazychick,im really sorry for your plight.Could you try asking your local gp for photocopies of the letters to him/her from the nuero.That was the was the way i learned what was going on and looked it up myself.At least your more prepared for your next appointment,and can demand more answers with your questions.That way not letting the nuero off the hook so to speak.All the best!!!
 
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nelly

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being on Keppra alone was hell for me. I went crazy felt like i was loosing my mind. I was seeing a new Dr. and wanted off the Keppra and back on Lamictal. she wouldn't do it. I went for a few more months and couldn't handle the crazyness anymore. I amitted myself in hospital and glad I did. I met a neurologist and he put me back on Lamictal.
I now am on Lamictal and Vimpat. no bad side-effects. I still have seizures, probably b/c of drinking beer. I have to stop !!!
 
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Hi nelly, i feel exactly the same on keppra, ya forget what you did 5 minutes prior to what you just done? i get so angry, i have had 2neuroliogists and none of them are really bothered, i keep telling them the keppra is no good its making my seizures worse but none of em will change it. My neuro was meant to rin g me back as i said last friday i couldnt handle this keppr anymore and its been a wek shes been no where near, its obv not that important to them is it? whats vimpat? i have never heard of that lol
 

nelly

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Hi crazychic

Are you still on Keppra ? I don't get why it's so difficult for them to just listen to us. We know our bodies and how drugs make us feel!

My Neurologist that I have is GREAT!! she's very personal and I know she cares I've moved and she's a ways a way from me. I have an appt in July to see a new Neuro- I've already done my EEG there 2wks ago. Im curious on my results. I want to know if theres been any changes since my last EEG.
If this Neuro Doc doesn't work out. I will continue to see her and drive across town.
 
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hi nelly yes am still on the dreaded keprra, i hate it but looks lookim going to hav eto deal with it until i get in touch with my neuro, yeah if new neuro is rubbish and other one is good i would do the same and drive across town to them aswell. Hope your eeg results are ok, im sure they should let you know if something is wrong. I had a 6 hour eeg few weks ago, they found nothing wrong with nine everything was ok so theyve no idea whats causing my seizures. They wont change my meds they wont try other tests even though an asking em to there useless. Thanks brandibrat i will have a look ata the link.
 

Crash

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Crazychick,remember they are only there to advise you with "What THEY THINK is the best course off treatment" You don't have to go along with it,you can say im not taking Keppra anymore,i would like to try an alternative.I always say this,but we know our epilepsy best,hard facts.They are not seen what you are going through daily.

My nuero a few years back tried to take me off Tegretol and replace it with more Epillim,i just said point blank "NO" Tegretol was the only aed that i had any faith in,i knew it gave me good seizure control and she wanted to yank it away and replace it with something that wasn't that great when it was on it's own,no chance.I really hope things look up for you soon on this bumpy ride we are all on.....best of luck.
 
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Janus

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This is a great thread. You are right Crash, as usual. I wish for a different kind of med myself but keppra works for me and i will just have to suffer through side effects (I call them 'effects') since that is what they do.. I tried transitioning to lemectal and very gradually transitioned. At one point when i was on small doses of keppra and 400 mg the new stuff i started having big T/C s all over the place. I am scared so i will just live with what i got now.
 

Crash

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Exactly Janus what do you do? Stay on your current combination off medication,or change,(i've been offered lamactal as well) But as you say,im pretty scared to tamper with things in the search off even better seizure control at the risk off things going to hell.It's like been on a tightrope,but on a very,very,VERY thin rope.
 
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qtowngirl

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in the search off even better seizure control at the risk off things going to hell.It's like been on a tightrope,but on a very,very,VERY thin rope.
couldn't have said it better myself neil. very very thin.
E meds suck!!
 
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crash i have tried all this and nothing seems to be geting done, keppra isnt good seizure control with me i have had them all the way through the course.
 

Crash

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Most of us on here(i would say),are on a two different drug combination.Some even three,so i can't understand why your nuero hasn't gone down this avenue with you,or at least your local doctor,who if he was worth his salt would have talked this possibility over with you.His patient,HIS number one concern.

But as you say know one seems to be listening,so perhaps it's time to put in a complaint or change doc and nuero,out with the old and in with the new so to speak.Keep us posted.

........And yes Q,very,very thin with a long,long drop.E MEDS DO SUCK!!!
 
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Crash i have complained about the first neuroligist and i asked for another one this is how i got a new one but its been 2 weeks this week since shes been anywhere near, i tried to ring again today got no response am fed up and getting so sick.
 

Crash

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Over here in Scotland,i phone my epi-nurse a nuero appointment is pretty far between like six months,or a year if you are doing,what they deem "ok".I can understand why you are getting so pissed off.

I still don't get why your local doctor isn't sorting this out? Doesn't your nuero have an receptionist to phone,and don't give up until you can speak to someone,even if it means calling all day and letting rip when you do get an answer!!!Perhaps someone else can chime in here with some ideas for you,but as i said above,keep us in the loop.

PS-If i may ask Crazychick,what country are you from? Perhaps the wheels don't turn the same as where im from?
 
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Janus

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Oh, man. (woman). I have such a time with it myself because of fear of trying new stuff that may/may not work. But hating the stuff I take. ugh!
 
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Yeah my neuro has a secreatary who seems a bit up herself and has what seems to me like a couldnt give a stuff attitude, my doctors are rubbish anyways, i finally got a phone call this morning from epilepsy nurse confirming an appointment. hopefully all this gets sorted.
 
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