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View Poll Results: How many different AEDs have you tried?
1 37 9.00%
2 60 14.60%
3 55 13.38%
4 49 11.92%
5 44 10.71%
6 28 6.81%
7 29 7.06%
8 26 6.33%
9 10 2.43%
More than nine 73 17.76%
Voters: 411. You may not vote on this poll

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  #1  
Old 07-29-2007, 03:38 PM
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How many different epilepsy drugs have you tried?


I think most people don't find the right solution on the first try. Let's see what the average is for the forum membership....

Anonymous voting as always.
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Old 07-29-2007, 04:36 PM
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First I was put on dilantin and got a rash . Than they tried pheno ,couldn't concentrate in school, than I was put on zarontion and mesantion .I always went back and forth between tegretol and mysoline and zarontion and mesantion. But when those stopped working, I tried the newer meds and they controlled my szs but made me so sick . I am always amazed when I meet someone who has been on the same anti-epileptic drug for 25 yrs or more without problem.
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Old 07-29-2007, 05:30 PM
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My first drug was Dilantin and I was on that for 19 years! (All 3 of my sons were born while I was on Dilantin. My OB and neurologist at the time convinced me that it was safer to be on a med than to risk a seizure. I did, however lower my dose from 300Mg. to 260Mg. None of my sons had any birth defects from the Dilantin.) The only reason I changed was on the advice of my neurologist at the time. I never realized how tired I was all the time what a fog I was in until I came off the Dilantin. When I was coming off the Dilantin, it was like a curtain had been lifted and I WOKE UP for the first time in 19 years! I felt more alive than I had ever felt. I had so much energy! I even had a sex-drive! That is until I tried the next anti-epileptic drug. The curtain came back down again. I tried Keppra next and became EVIL! I was on that for 6 months and cried and screamed and duh, never connected the two. It is truly a wonder my poor husband did not divorce me. Topamax came next and caused severe eye pain and metallic taste as well as loss of appetite. On Lamictal, I would stop speaking in mid-sentence because I couldn't remember what I was saying??????? At this point, I tried to go back on Dilantin after being off it for a couple of years and could not sleep. It didn't matter when I took the Dilantin, I could not sleep. Finally my neurologist tried Zonegran. I had severe insomnia at first and lost about 10 pounds but after changing my dose from night to morning, it got better. Now after 5 years on Zonegran, that has stopped working too. I have developed severe headaches, eye pressure, and tingling and numbing sensations. It is worth noting that NONE of the meds I have taken have ever completely taken away the myoclonic jerks I have several mornings a week. They have only controlled the tonic-clonic ones. Of course, my neurologist tells me it is because I refuse to try Depakote, the drug of choice for juvenile myoclonic epilepsy. He just doesn't understand why I don't want to get bald and fat.
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  #4  
Old 07-29-2007, 05:35 PM
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Originally Posted by Blessed View Post:
Finally my neurologist tried Zonegran. I had severe insomnia at first and lost about 10 pounds but after changing my dose from night to morning, it got better. Now after 5 years on Zonegran, that has stopped working too.

Blessed? How much Zonegran were you on? Are you
aware that you're supposed to drink a lot of water
when you're on Zonegran? And if you're allergic to
SULFA - you shouldn't take Zonegran?

I take Zonegran 500 mg daily (200 AM / 300 PM)
along with Klonopin 1.5 mg daily (.5 mg x 3)
and Folic Acid (a vitamin) - 2 mg in the morning.

Edited:
I was on Dilantin for nearly 26 years and it's
still the "Spare Tire in the Trunk", it wrecked
a havoc on my teeth and it's still "Old Faithful"
and a back up in case anything else fails.

Last edited by brain; 07-29-2007 at 05:37 PM. Reason: edited to add Old Faithful back in - Dilantin
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Old 07-29-2007, 05:52 PM
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Brain, I was started out at 200mg. Zonegran. It was dropped to 100mg. The intolerable side effects (headaches, etc.) started at 100mg. I'm now at 75mg.(the side effects are still continuing but have gotten a bit less) and titrating down. I try to drink a lot of water (it doesn't seem to matter if I drink more, I just spend more time in the bathroom) and I don't think I am allergic to sulfa drugs.

I'm hoping to find help with supplements, homeopathy, and neurofeedback. I've run out of options.
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Old 07-29-2007, 08:58 PM
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There are also diets that you can try. The well hasn't run dry yet.
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Old 08-09-2007, 10:10 PM
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Five years ago when I was rediagnosed with epilepsy I was put on Tegretol.

Three years ago I was taking regular turns so the neurologist was going to gradualy take me of the Tegretol & put me on Lamictal. But while I was going of the Tegretol I had a grandmal seizure at my place of employment at the time. My neurologist ended up keeping me on both the Tegretol & Lamictal.

Last year I was taken of of the Lamictal & put on Topamax, I am now on Tegretol & Topamax.
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Old 08-09-2007, 10:16 PM
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Well, with 10 votes in, the poll shows 90% of voters have tried more that one anti-epileptic drug. I'm sure that the results are skewed a bit (versus the total epilepsy population) since there is a larger percentage of uncontrolled or difficult cases seeking out epilepsy forums, but I think it still indicates that finding seizure control takes some trial and error.
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Old 09-01-2007, 10:39 AM
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Smile I've had E 43 yrs




Hello My seizures started when I was two.
I've been on 19 different drugs and had brainsurgery this is my 3rd VNS.

I went through school with seizures and learned early to accept it.
My seizure's are refractory and I've had twice in my life been decently controlled.
I volunteered at epilepsy foundation in Atlanta for 2 yrs.
Been with same neurologist for 17 yrs in September.

If I have a seizure that's life its way I feel.
I have Complex partial,simple partial,Atonic,Tonic-clonic, and absence seizures. I've been to like 4 different epilepsy clinics live 15 minute ride from one of the teaching hospitals Emory. I've been through worse than seizures in my life and if I can survive all I've been through.
Busted my head open 3-4 dozen times. I refuse to sit at home wait for my next seizure.

I've said enough Belinda
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Old 09-16-2007, 09:41 PM
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OK lets see if i can remember all of the drugs my son has been on. I apologize if my spelling is off...
Depakote, Depakote E.R., Trileptal, Keepra, Zonegran, Lamictal, Topamax, Lyrica,tranzene (simple partial?) when needed. I think there is one more but at this moment I can't recall it.
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Old 09-27-2007, 07:45 PM
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I've been on phenobarbitone, dilantin, tegretol, epilim, frisium, zarontin and topamax. I'm sure there are more that I took as a child, but I cannot remember them.

Worst side effect was epilim, as it made my hair fall out in chunks. Not great when you are a 15 year old girl. So I shaved my head bald and pretended I was making a fashion/personality statement.
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Old 09-27-2007, 08:45 PM
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Originally Posted by Yve View Post:
Worst side effect was epilim, as it made my hair fall out in chunks. Not great when you are a 15 year old girl. So I shaved my head bald and pretended I was making a fashion/personality statement.
Yesterday I was talking to a family friend who also has epilepsy. She was saying she is on epilem but one of the side effects from the epilem was that it has made her hair thinner.
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Old 09-27-2007, 09:16 PM
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Stacy complained of her hair falling out when she was on Depakote/Epilim too.
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Old 10-18-2007, 10:56 PM
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let's see.....what have i taken?


phenobarbital (18 years), dilantin (35+ years), tegretol, lamictal (7 yrs), klonopin (7 yrs), neurontin, depakote, depakote er, depakene, felbatol, ativan (what a joke) and there's five others that the names are escaping me at the moment..........

Meetz
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Old 10-29-2007, 01:37 AM
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If only trying all these was like getting to try candys at the candy store... and the only side effect was tooth decay...

I have tried,,, hmm lets see
tegretol, & tegretol cr, dilatin, epilem, nuerontin, topamax, phenobarbital I cant remember the ones i was on as a child as i asure there are one or two more,,,,

these have all been tried in various and i do mean various doses and combinations taking 1, 2 and even three at a time....

I am now on yet another two being kepra 1000/1500 mg and lamictal 300mg morn/night
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Old 10-29-2007, 01:14 PM
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Zarontin, Depakote, Depakote ER, Lamictal, Topamax, Nerontin, Tegrotal, Dilantin, and..... I cant remember the last one.
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Old 10-29-2007, 01:41 PM
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Everone of them!!!!!! I have tried EVERY anti-epileptic drug out there, I kid you not! The ones that work Felbatol, Topamax, Keppra, Lamictal, Trileptal.
The 2 with the least side effects of those are lamictal and topamax which I take now.
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Lamictal 400mg, Topamax 100mg daily.

Last edited by Elisa; 11-25-2007 at 02:06 PM.
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Old 11-25-2007, 10:10 PM
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Ive only been on one so far.

I heard someone mention klonopin - I was on that before for nite terrors & sleepwalking. Interesting.
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Old 11-25-2007, 11:40 PM
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Hi Zuri - Welcome
I hope your one does the trick. My 16 year old is on her fourth.. and I think we are going to ask to come off of it at the next visit.
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Old 11-26-2007, 10:55 AM
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I can't remember all the ones I have been on and off and for how long exactly.
I know I was started on dilantin, then when they discovered the other happenins were seizures not panic attacks, klonopin and another one was added.
Then they took me off the klonopin and the other because it wasn't working, then phenobarbital, added the generic for klonopin, then Tegratol XR with those two, still no control over the P and complex partial's.
I know I missed at least one in the previous paragraph, then the surgery and was taken off the phenobarbital, and the Tegratol XR was changed to the carbmenabine,simple partial). Then after awhil the seizures returned and now on the Carbmenbine, clonzapam(simple partial) and Lamitical.
Still having the seizures, I have experienced so many different side affects from all. Mostly right now, headaches, sleep problems, memory loss oh so many more.
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