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

KarenB

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So...wondering...iss Zonegran low on the poll because it's side effects aren't as bad as other, or is it low on the poll because it's a newer drug and not commonly prescribed?
 
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Hm... well I started on Keppra and just added Lamictal to the list. So far it would seem I had way more side effects on Keppra... but.... I just now got to 100 mg of Lamictal so I'm still at a low dose. I do know my dreams have been quite strange lately and I've been a bit dizzy during the day, but when I first started keppra I couldn't stop crying, couldn't walk in a straight line, and was nauseous with a really sore throat for awhile. Also I didn't have any partials for two weeks after starting Lamictal until a few days ago (that is the longest I'd gone since my last TC). So in my limited experience, Keppra wins worst.

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Toss up I have had so many bad reactions to dilantin,depakote,zonegran,tegretol only one that is somewhat tollerable is lamictal im on keppra makes me violent and then emotional.topamax is tearing my organs apart dont like the way it makes me feel same with phenobarbital the ativan is my only life saver I know 5 meds and all almost top doses
 

KarenB

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Do ANY of these meds actually WORK?? It's extra crappy when one has hideous side effects AND seizures.

In our experience -- the ONLY med that worked (out of Keppra, Topamax, Lamictal, Trileptal and Depakote) was Topamax. And then that stopped after 3 1/2 years.

Sometimes it just seems like docs want to put you on a med just to have you on a med. Like, yesterday, doc said, "Well, let's try Keppra" -- "Um...he was on Keppra for 6 months -- just as many seizures as before." "Well -- you never know -- sometimes you can go back to a drug and it didn't work before, but maybe now it'll work." And I just refused to go back to a drug that didn't work the first time around AND has horrible side effects.

How about a poll about which meds work best to stop seizures?
 
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That would be a good poll cause I have tried everything still have multiple seizures a day.drop ones always hurt I stop breathin way too much
 

KarenB

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Not seeing Diazepam on list? Maybe because it's more of a temporary drug? Just had that prescribed to wean Jon off Clonazepam, which he's been on for a week due to seizure clusters every night. So...what happens when it's time to come off of Diazepam?

Also started on Zonegran tonight. Along with thyroid meds.
 
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depends if he is still clustering he will go to another prn like it lorazepam helps sometimes with my seizures.i really do hope u guys have better results then i did with the zonegran.to me its worst when achild has it never know their future if there going to grow out of it or living with epilepsy until they find a cure or a surgery that fits ur child.
 

KarenB

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Well, as I understand it, the Diazepam is a temporary measure to stop the nightly seizures, whilst at the same time weaning off Clonazapam. Once the seizures are under control, then he gets weaned off the Diazepam. But...it appears that Diazepam is also addictive -- causes withdrawal seizures...so...?

The Zonegran is supposed to be more of the long-term drug to maintain seizure control.

We sort of did this before, about a year and half ago, but in the hospital. He was having tonic-clonics about every 1 or 2 hours (whenever he would wake up from the last one). Then they gave him Ativan (Lorazepam) by IV for several days, until the seizures stopped. Once the seizures stopped, the Keto diet and Valproic Acid maintained control -- for 11 months (actually, VPA weaned after about half that time).

So...here's hoping and praying....

We had to wean off VPA because of liver issues and bone marrow disease. Hoping the Zonegran works, and doesn't cause bad side effects -- we'll probably not try to wean -- don't want to go down this road again.
 

KarenB

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Clonazapam (is that the same as Klonopin?) is Jon's "rescue med." He's had it forever, but we never used it because he didn't need rescueing (11 months seizure free on Keto diet) ...until this week, when he started having clusters of tonic/clonic and tonic seizures at night.

Anyway, he's been taking it the past 3 nights (while his neurologisti and endocrinologist and epileptologist figure out what's causing his early puberty and surge of seizures and what to do about it).

And...we're LIKING the effect it's having. In spite of having seizures during the night, he is SO much better during the day -- good eye contact, good attention span, good impulse control, better social interactions, better with fine motor skills...

His Developmental Pediatrician saw him yesterday, and commented that his autistic tendencies have seemed to disappear, and we were joking that it's too bad he can't been on Clonazapam all the time. But I guess the body gets used to it after a couple months??
Aha! scientific research has just confirmed what we noted with Clonazapam 2 weeks ago -- the study was on autistic mice with Dravet mutation.

http://www.sciencedaily.com/releases/2012/08/120822131210.htm

Since going off of Clonazapam, his autistic tendencies have returned, even though he's now on Diazepam, which is in the same family.

I WISH he could be on Clonazapam all the time, but it's such an insidious drug.
 

nicholas:)

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Karen I wish I was back on Clonazepam - weaning off of, now on 1mg. Replaced by 400mg Pregabalin. Seizures are increasing. Might be early days.
 

ShannonD

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Lamictal is my nightmare right now! In able to lose weight and the paranoia and anxiety attacks...... especially if I agree to take the increased dosage. With out taking the increased dosage it isn't as bad but the anxiety is insane.... but with the increased dosage holy cow... I am so paranoid someone is going to break in the house and or I'm dying... it is horrible.
 

Eve

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:e:I wish I could take Clonazapam more myself it really helps when I think I maybe getting an anxiety attack that could lead to a seizure. And it does help me sleep better. I just wish I could take it more. I take maybe 2 tablets a week. I get a limited supply of it. I know its addictive. However I have found it to be the best calmer to take with my Keppra and sometime when I wake up in the middle of the night confused not knowing whether I had a seizure I take Clonazapam (Klonplin) and it calms me right down. At times it has been a lifesaver.
 

nicholas:)

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I agree, Eve. It's great for anxiety - I have come to realise this now I am being weaned off of it, I'm more anxious of late. My GP has okayed it for me to take clonazepam PRN (as and when I need to) and I am thinking that at the end of this coming week when I have come off of it, I shall take it when I become too anxious.
 
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I hate depakote because I was on it when I was pregnant.And don't yell at me they were just doing studies back then. And the bigger I got the more meds they gave me. Then they had to detox my son. Then he was put right back on it because of the myos.And topamaxI hate dilantan. It made my gums swell so bad. I just had to have surgery and brush my gums 2 hours a day.
 
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I've tried all of the above from time to time.
Thing is I can't remember what happened except for a few of them I take right now.
I've been on tests for some new drugs. One of them basically made me nuts and it didn't help.
I wish I could be more of a help.
I think my memory is going too, but that could be my age
 

momof3boys

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For me, the worst seizure medication I can recall that gave me the most horriable side effects was Lamictal. I was on it for two weeks, and it gave me the most horriable side effects ever! Sores which I thought was acne around my chin area, and mouth.... OMG... as time went on, and the dose increased, the worst they got! They cracked open and bleed! :( Then also came the swelling glands in my neck! My dr thought it was a sinus infection! WRONG! I just felt horriable. Within days of stopping the medication, I saw a huge improvment! :)
 
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For me, the worst seizure medication I can recall that gave me the most horriable side effects was Lamictal. I was on it for two weeks, and it gave me the most horriable side effects ever! Sores which I thought was acne around my chin area, and mouth.... OMG... as time went on, and the dose increased, the worst they got! They cracked open and bleed! :( Then also came the swelling glands in my neck! My dr thought it was a sinus infection! WRONG! I just felt horriable. Within days of stopping the medication, I saw a huge improvment! :)
I feel so lucky I haven't had any REALLY negative size effects to Lamictal. Definitely have had some, though most have gone away and it seems to be working. At least better than Keppra did by itself (and antidepressants helped counteract the moodiness from Keppra, which I'd like to at least lower the dose of). I have had some extra acne though and easier bruising ... but so far nothing that would force me off and onto something else (which scares me from what others have mentioned about other meds ).

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Chase

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Definitely Keppra. I literally have only a vague recollection of the year 2011, when I was on Keppra. It did a lot of crazy things to me. Not only did it significantly affect my memory, but it changed me. I was a different person on Keppra. I hallucinated a few times, too. One of my friends recently told me that I couldn't even hold a decent conversation for very long, because I would end up forgetting what we were talking about.

Why I was on it for an entire year, I don't know. I assume I didn't have the state of mind to say "hey, this isn't good, let's change my meds." And on top of all that, it didn't even stop my seizures. -_-

Depakote is working now, as far as seizures go. And my memory is better. But I still shake sometimes. That's about it, as far as I know.
 

KarenB

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Jon just started Keppra a week ago. Since he started, I've been awakened twice in the middle of the night by his attacking me -- pinching and scratching. He wakes up in the middle of the night and is super hyper -- can't calm down and get back to sleep, just roams restlessly from his bed to mine to the floor -- wants to roam through the house. He also has hyperactive -- almost manic episodes in the daytime where he suddenly leaps up with this huge burst of energy and just tears around.

The aggression and hyperactivity have also been sparked by 2 other drugs -- trileptal and diazepam. When he goes off them, or even reduce the dose, those kind of side effects stop.

This was supposed to be a 2 week trial for Keppra -- I didn't have my hopes up, because he'd taken it as a baby, and it didn't help then. But the damndest thing is...it seems to be working...he's gone about 40 hours now without a seizure -- first time in over 3 weeks that he's gone that long without having a seizure.
 
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