How many different epilepsy drugs have you tried?

How many different AEDs have you tried?

  • 1

    Votes: 33 8.8%
  • 2

    Votes: 54 14.4%
  • 3

    Votes: 52 13.9%
  • 4

    Votes: 46 12.3%
  • 5

    Votes: 38 10.1%
  • 6

    Votes: 24 6.4%
  • 7

    Votes: 28 7.5%
  • 8

    Votes: 23 6.1%
  • 9

    Votes: 9 2.4%
  • More than nine

    Votes: 68 18.1%

  • Total voters
    375

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Phenobarb - seizures were well controlled but I was totally spaced out
Tegretol - not as bad side effects but didn't control seizures as well as the phenobarb (after trialling this I had combined phenobarb and tegretol for a while which worked pretty well and gave a decent balance between seizure control and minimising side effects)
Epilim - Great medication. Only problem being that it slows down the metabolism. I'm now 100kg and hating it but such is life - I just have to push myself that bit harder to lose the weight
Lamictal - I found this not to be as effective as the Epilim. I was experiencing unwanted (I guess when is a side effect really wanted anyway??) side effects and seizures. Am currently still on it but will soon start to wean off.
 
I have used Dilantin and Tegretol/Tegretol XR for most of the the 33 years that I have had Epilepsy. Dilantin worked great but the side effects of the gums swelling sucked. Tegretol XR has worked well until recently.
 
When Rebecca was on Tegretol XR she had terrible vision loss. Now that she is on Trileptal which is similar of Tegretol she is having an increase in seizures every time I attempt to raise the dose. I now am wondering if the Tegretol XR was actually causing mini seizures which had a symptom of vision loss. Hard to know, but it is something I have considered.
 
When Rebecca was on Tegretol XR she had terrible vision loss. Now that she is on Trileptal which is similar of Tegretol she is having an increase in seizures every time I attempt to raise the dose. I now am wondering if the Tegretol XR was actually causing mini seizures which had a symptom of vision loss. Hard to know, but it is something I have considered.

Tegretol has made me have "mini seizures" wow..thats crazy...I thought it just wasnt working...I didnt know it was a side effect...I will have very small Simple Partial seizures and thats it...But Im on regular Tegretol...I dont know if that would make a difference or not...
 
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I don't know the answer to this. I just saw an increase on the Trileptal she was on and both drugs are related so it was a theory of mine. I have also read that it can be a side effect of certain drugs. I don't know if it is specifically to these two, but I don't want to go digging for that answer now that she isn't taking either.
 
Hmmm...actually, I've always taken phenobarbital. Then, when I turned 13, they added Depakote. They just took me off Depakote about 1-2 years ago.
 
When Rebecca was on Tegretol XR she had terrible vision loss. Now that she is on Trileptal which is similar of Tegretol she is having an increase in seizures every time I attempt to raise the dose. I now am wondering if the Tegretol XR was actually causing mini seizures which had a symptom of vision loss. Hard to know, but it is something I have considered.

Interesting that you talk about the increase in the number of seizures after raising the dose. I just went through the same thing after they raised my Tegretol XR dose.
 
I am on carbamazepine 400mg per night...and i love it i sleep i eat i have a sex drive i never feel sick from it....but if i miss it i get head aches so i dont miss it! and people say it also comtrols your mood...but dont quote me on that!
 
Changes were made because of side-effects, not bad seizure control.
 
I have taken Ativan, DepekoteER, Dilantin, Kepra,Klonopin,Lamictal, Neurontin, Tegrotol, Topamax, Trileptal, Zonegran(the worst one of all I thought I was going to DIE), Diastate suppository, plus I've had the VNS implanted twice. So far the 2nd time it hasn't worked.
 
I was just on Top. but now I am on zonegran to. The doc (after I gained over25 lbs in two months) told me that the 2 together can have an adverse affect. So now instead of being a size 8 I am a 10. That's not bad. Its just that none of my clothes fit all of a sudden. He is suppose to take me off the topamax. Help me Lord!
 
i have only been on one drug so far.

i was told by my nanna today that i'm a druger lol.
i thought it was funny lol becouse i thought i lfed my reports drugs at boots.

cazzie
 
After my first TC when I was 13 my neuro put my on Dilantin, and on Dilantin I haved stayed until January of this year. In 2002 we tried to add Depakote as I was having TONS of, well I don't even know what, anymore... That was horrible. Then my neuro tried to switch me to Lamictal, which was not successful AT ALL! So I was put back on Dilantin, added Klonopin PRN. Around March of 2007 I was my galbladder taken out and the hospital overdosed me on Dilantin, which lead to a prescription of Ativan PRN. And I've always had Diastat for emergencies, since I typically don't stop on my own. In January I started a switch from Dilantin to Topamax.
 
Neortrin (simple partial) (robin you were right that was the n one), this is my actual first medication for ep. but I have taken Lyrica for fibro before i was dx with ep. and now thinking back on it and looking at my jounal I didn't have any siezures or spasms while on it. hmmmm.

Edited to add: I only took Lyrica for about a month. Is that even long enough to make a difference, don't you have to take it awhile before it starts to help?
 
Interesting ...........

80 people have voted so far:

Nearly half of them (well rounding it
up) - have been on 5 and the other
half have been on 10 or more. If
you look at the chart. Pretty impressive
gap there.
 
I started out on Depakote. It never really worked well for me. Still had seizures. In 1998 I was put on Tegretol. Haven't had a seizure since. In 2007 my neurologist switched me to Carbatrol for insurance purposes. My neurologist told me that it was basically the same as Tegretol.

Still seizure free :woot:
 
HELLO. LET ME TRY AND REMEMBER

pheno, dilantin,depakote, klonopin, ativan, terotol xr, neurontion, topmax, trileptal, I am sure there was other but not sure of names. I am now on
KEPPRA, LAMICTAL, AND ZONERAM. but none have got me under control.

nancy
 
I could never remember what I have been on, lets see....first on tegretol bad behavior. 10 years old1975. from the chicken pox. depakote, dilantin, topamax, lamictal, lorazepam, zorontin,keppra, zonegran, and others.I had a brain infection with b-cells 4 years ago and was in a coma for 5 days. so zonisimide for that. Fluid on the brain. I am clear for that. "maybe" one more mri and no more spinal taps.
 
living joyfully with epilepsy

I could never remember what I have been on, lets see....first on tegretol bad behavior. 10 years old1975. from the chicken pox. depakote, dilantin, topamax, lamictal, lorazepam, zorontin,keppra, zonegran, and others.I had a brain infection with b-cells 4 years ago and was in a coma for 5 days. so zonisimide for that. Fluid on the brain. I am clear for that. "maybe" one more mri and no more spinal taps.But I do have several types of seizures and 2 types of epilepsies. life can be handled and life can be loved. Its just a matter of taking time to get thru it and learning from it. I love you all and admire what you have to go thru. peace Teresa:rock:
 
I have taken enough AED's to where I can own a pharmacy. :e: :ponder: :medsym::cheers:
 
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