What kind of side affects do you have from Trileptal?!

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kellert16

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I started taking it about a week ago... looking for some real sneers on side affects on Trilepta.
 
This was the WORST of all the medicines that Jon was on -- not only were the side effects horrific, but it made his seizures worse.

A lot of people have good experiences on Trileptal, but we most certainly did NOT.

Side effects we experienced:
1) Extreme hyperactivity -- to the point that he could not sit in his chair more than 10 seconds. He couldn't even sit on the toilet long enough to do his business.

2) Extreme autistic like symptoms -- he would get easily overstimulated -- any place with bright lights, loud noise -- Walmart, church, the movies, you name it. He would go into a sort of melt-down, where he would get extremely rigid, holding his hands up next to his head and shaking them (but they would be rigid), and making this loud repetitive grunt.

3) Aggression and psychotic behavior -- hissing, snarling, biting, pinching, pulling hair, hitting, kicking (his principal wanted to remove him from school and put him into the school for bad kids)

These symptoms abated when weaned off of Trileptal.

His neurologist told us that Trileptal is also used to treat bi-polar disease, and that some people (especially children) have a paradoxical reaction to meds like this, where they develop the symptoms the medication is meant to heal.

At any rate, here's hoping that the Trileptal controls your seizures without the dreadful side effects we had!
 
Worst medication I've been on

1)lost weight
2)I became suicidal
3) Toxic epidermal necrolysis/SJS. I was in hospital for a week :(

This doesn't mean you will have all these, there are many people in this forum who had success with Trileptal..don't worry!
 
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I have only heard bad things about this drug... it concerns me. I am very sleepy... my moods are up and down. I'm giving it till my next appt.
 
I have only heard bad things about this drug... it concerns me. I am very sleepy... my moods are up and down. I'm giving it till my next appt.

I was very sleepy also, I forgot to mention it. If you feel like your skin color is changing or the skin is peeling, or you have a fever for no apparent reason, you SHOULD immediately call your doctor. Don't wait til your next appointment. That's one of the mistakes I almost did.
 
I'm just checking on you. How are you feeling now? are your moods back to normal?
 
Awe! Thanks! My moods seem better leveled! I'm only sleepy but its not affecting my job so I'm ok with sleeping a lot. That was nice if you to ask! :-)
 
Awe! Thanks! My moods seem better leveled! I'm only sleepy but its not affecting my job so I'm ok with sleeping a lot. That was nice if you to ask! :-)

No probs ;) I don't want you to go through what I went through that's why I asked :)

:woot:so you're doing good.
 
Sorry to add to the horrible side effects but I also felt suicidle. Thankfully I had my Neurologists cell number and was able to call him on the weekend and asked him if I could stop it. It scared me and I was praying constantly to snap out of it. Nonetheless, everyone responds differently to medicines. It might work for you. Hopefully it does and you don't have a horrible experience.
 
No, never had sores before, but the doctor said if they are mild (which they are) it is normal.

I agree Cordero, I had so many side effects from topamax that others did not. It is good to hear what could happen, things I can look out for!
 
Good to hear you aren't having any side effects you can't live with.

How's it working for the seizures?
 
Acne. Lots of acne :/

Never had problems with it. Now I do. And I'm only 19
 
I have some pros and cons to say about Trileptal. First of all, I will say that it worked really well at controlling my seizures. Better than any other med I've tried (excluding Vimpat and Dilantin, since I'm still not sure how well those work for me). I was on Tegretol, Keppra, and then Zonegran before I was put on Trileptal. The others didn't work as well, and I had worse side effects.

I had both my pregnancies while taking Trileptal (monotherapy). My son was born with a slight cleft in the soft palate which required surgery, but no speech therapy was necessary. Otherwise, both children were born completely healthy. I was even able to breastfeed my daughter (I couldn't BF my son because of his cleft palate).

I did experience some of the typical side effects with this drug--tiredness, a reduction in mental quickness, and blurred/double vision and room scrolling when the dose was too high. But the side effects were very livable, especially compared to what I had been taking before.

I've been taking Trileptal for about 8+ years, but I'm having to get off it now because it started causing my blood sodium levels to plummet. Now this has been really awful. It's only been happening for the last couple of years, but the side effects of low sodium are awful. Constant nausea, weakness, exhaustion, etc. I lost weight and could barely choke down anything. I am now on sodium supplements, and soon I will be off the Trileptal.

I have to say, I went a long time on this drug without any problems, and it worked great--only had a seizure maybe once every couple of months. The low sodium only became an issue after my second pregnancy. Not sure if there's a link there or not, but hormones can do strange things.
 
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