Which AEDs give you the worst side effects?

[acpollard2010]

Thats sure not the u.s. They wont help even if ur dying and thats the truth love my freedom not healthcare.ugh

 

[lepetitrouge]

Phenytoin

Phenytoin made me break out in a reddish-purple rash over my whole body :s My parents thought I had measles, but the doctor knew straight away that it was from the phenytoin.

 

[RachelinAZ]

Depakote / Major weight gain, slept all of the time
Dilantin / Ate my gums away
Tegretol/ Seems to be eating my gums away and I wonder about the weight gain.

 

[RobinN]

All if them, but suicidal tendencies with Gabapentin were what scared me the most. I had never been warned

 

[Hand of Blood]

its hard to say i only been on 2 but tegretol is bad and keppra is bad and i take them both i feel like the walking dead! lol been struggling to get off tegretol for ages now then they stick me on keppra and it made me worse..... am wanting to change to lamictal but hearing the bad stories here im not so sure anymore...... hate these meds!

 

[keyra]

Topamax was my WORST! It made me a zombie. I couldn't really think my brain was so sow. I couldn't concentrate on anything. It dehydrated me like crazy, but somehow it caused water to give me heartburn. Dry mouth was horrible. I couldn't keep my eyes open. And i often i couldn't recognize and understand words.

Now i'm on Trileptal and am faily happy with it.
It does kill my sodium intake. And makes me drowsy, but that's pretty much it.

I recently was prescribed neurontin . . . Any success with it for anyone else?

 

[CQ:)]

I recently was prescribed neurontin . . . Any success with it for anyone else?

I was on Neurontin from Nov 2009 - Nov 2010. I hated being on the Neurontin as it gave me the worse side effects of all the meds I've been on. While I was on the Neurontin I was always tired, had terrible mood swings (could cry or snap at the drop of a pin) & I'm sure it affected my memory aswell.

The Neurontin may not have worked for me but there may be other people that it has worked for & hope it helps control your seizures.

 

[nicholas:)]

Sometimes it's not about the prescribed medication but about the dosage. Sometimes being on two drugs on low dosage is better than being on one drug on a high dosage. It too depends on the type of seizures one has. We are all individuals and the medication prescribed may work for some and not others.

Try not to be afraid of your medication. You know yourself best so if some drug is too much for you then try having it reduced or changed. Unfortunately it is not an exact science so it's more of trial and error. Hopefully there is something, at the right dosage, out there that will work for you with minimum side effects

 

[CQ:)]

Sometimes it's not about the prescribed medication but about the dosage. Sometimes being on two drugs on low dosage is better than being on one drug on a high dosage. It too depends on the type of seizures one has. We are all individuals and the medication prescribed may work for some and not others.

:agree: Nicholas,

I'm pretty sure that I have said a few times that each person is different when it comes to our seizures, the meds & how the meds affect us.

When my Neurologist 1st added Neurontin in Nov 2009 I was already on Keppra 1500mg (twice a day) & Tegretol 400mg (twice a day). I can't remember the original doseage of the Neurontin but think it was 400mg (twice a day).
I went back to see my Neurologist in July 2010 because I needed some medical forms filled out. When I was there he asked me how I was going on the Neurontin, I told him that i was still having partial seizures & the Neurontin made me tired. My Mum had also noticed that my mood changed since I started the Neurontin. My Neurologist changed my dosage of the Neurontin but instead of lowering it he actually increased it to another 400mg.
This extra doseage just made things worse, I got even more tired usually needing a sleep every day & as I already said my personality changed in a bad way.

At the time my Neurontin was increased I was going through testing to see if I could have surgery. I had a Video EEG in November 2010 & when I went in for my Video EEG I gave the epitiologist a list of what meds I was on with a detail of how the Neurontin was affecting me. The epitiologist took me straight of the Neurontin & kept me of it. After the Video EEG was over the Epitiologists had also changed my Keppra doseage lowering it to 1000mg a day. With this new doseage level I wasn't so tired anymore & I went back to my old happy self.

 

[stilldancing_98]

never been on it. sorry

 

[KarenB]

Wow, it was hard to choose which one was worse on my son.

When on Topomax, he lost spoken language (but it did work to stop seizures for several years)

When on Trileptal, he became psychotic, violent, hyperactive, incontinent, and developed strong autistic traits. And his seizure became worse.

When on Depakote, he was a zombie in his own little world, and then it started causing liver damage. It did help the seizures some, but did not provide complete control until combined with ketogenic diet.

I finally decided to vote for Trileptal, because it had horrific side effects AND it didn't work.

 

[antecee]

Worst meds

I HATE THEM ALL!

It was either Tegretol or Depakote that made me sleep all day. And on the other I gained over 30 lbs. Tried a third one (don't remember the name, but the only thing I could keep down was ice-cream. I did lose the 30 lbs. though, but the other side effects? Let's just say I was trippin' (and I don't mean falling down). I think that med was taken off the market. On to the granddaddy of them all, Phenobarbital. It felt good to be so calm after the others, but I had to drop out of grad school because I couldn't concentrate.

I'm now on Lamictal, but it has caused severe insomnia. My doc added Topamax because he thought it would help with sleep, but it made me so sick I would have preferred a seizure. Then back to mono Lamictal. Now my doc wants me to try Gabapentin as an adjunct. Not too many of you mentioned that one, so I curious as to why? It is just for certain types of seizures? After all the side-effects of all the other meds, I so scared to try another. In fact, I'm looking at the little orange bottle right now that has remained unopened since I picked it up.

 

[KarenB]

Is the Lamictal keeping the seizures under control? Is the Gabapentin just for insomnia or for control that Lamictal isn't providing? It seems a little over the top to order an adjunct seizure med just for insomnia, although lack of sleep can definitely lower the seizure threshhold.

 

[KarenB]

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??

 

[nicholas:)]

I've been on Clonazepam for ten months - I liked it even though it made me drowsy.
My GP is weaning me off of it and has put me on Pregabilin because she says Clonazepam is habit forming. I'm pleased it is working for Jon.

 

[KarenB]

Thanks, Nicolas.

Yes, he's a bit drowsy in the morning (but having multiple seizures during the night could do that as well), but actually, this morning he woke ME up.

It's too bad one can't stay on it for a long time, it does seem a nice drug (as AED's go).

I wonder if we could go on it short term, along with the Keto diet that he's already on, and maybe once the seizures get settled down, he'd be able to just be on the Keto diet, as he was before. Perhaps once the docs get the precocious puberty thing sorted out.... (here's hoping)

Most of the options are just so horrible, and Jon's already had liver issues with Valproic Acid along with a blood disorder. And some of them cause acidosis, which is a problem with also being on the Keto diet.

 

[nicholas:)]

Your GP may be happy for Jon to stay on Clonazepam for some time if not indefinitely. I'm being weaned off of it because I have mental health issues and I am on various other medications ie Quetiapean, Mirtazapine and Tegretol - and now Pregabalin. I take meds for my heart condition too since my heart attack in 2008.

Fingers crossed for JON

 

[KarenB]

Yes, well thanks, we'll see what's decided tomorrow, although I expect he'll need more testing to sort everything out.

 

[KarenB]

Zonegran?

Well, saw Neurologist today, and both he and the Epileptologist are suggesting Zonegran. I guess it's a little similar to Topomax, and Topamax did work for 3 1/2 years...and then stopped. I notice in the poll here that it's on the bottom of the "worst" list, and my perusal of side effects didn't look too horrible -- except for the metabolic acidosis part. That might be a problem with the Ketogenic diet.

 

[katzy]

Trileptal- Rash/SJS
Lamictal - short term memory screwed up