Anyone have experience with Trileptal (Oxcarbazepine) ?

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momof3boys

momof3boys

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Im trying it for the first time tonight! Im so freaking nervous! Over the past couple of days the auras and seizures have picked up, and Im needing to try a add on medication with the Keppra XR to get these things under control.

This will be my second time trying a generic seizure drug. My first time was in November 2012, when I tried the generic Keppra xr and it didnt work. But I dont want to keep getting the brand name seizure drugs and pay a crap load, only to find out they are not going to work.

So I thought Id ask here to see if anyone has had any good/bad experiences with the generic version of Trileptal?
 
I've been on Trileptal (Oxcarbazepine) for at least years. When I first was put on it my drug store gave me the name brand. But afterwards I was getting the cheapest generic version they could provide refill after refill. Sometimes there was two different generics in one bottle. All this did was make my seizures worse. Often I would have more, sometimes within a few minutes of each other. All this happened because my insurance wanted to save money. After I talked with my neurologist about this problem of revolving generics, he started to Rx my Trileptal DAW [Dispense As Written]. He has done this for at least 2-3 years. Recently my insurance tried to force me to take the generic again. I had to get my neurologist to fill out a exemption form stating I needed the the real Trileptal. He will need to do that each year while I'm on it.
 
I took my first dose at 10:30pm, went to bed, and woke up at 1am with tightness in my chest, a huge headache and I felt like puking. I tried propping myself up in bed, and the tightness is still there. The best way to describe it, is if youre taking a rag and ringing it out, when you breath in and out. the tightness feeling from my chin area all the way down to my breast bone area, just a straight way down, anytime I breath in and out.

I did contact a 24 hour pharmacy and the pharmacist said it sounds like an allergic reaction. I just didnt know if by taking one dose of it, could it come on this fast? Or would you have to be on the medication for a certain time period before anything like this were to happen? He recommended I take some benadryl to help this, and avoid swelling to my airway. Then to call first thing in the morning to the drs office to let them know about this.

I just feel like giving up. I was given the generic version of Trileptal.
 
Thats scary, I hope you're alright now!

I took the generic version of trileptal for a few years and it worked great. I ended up having to switch to another AED because of low sodium levels (cause by trileptal).

I'm on three AEDS which are all generic versions. They swap the brands every now and again but I haven't noticed a differeance. If you check out question three on the link below you will see that generics must have 80%-125% of the active ingredient found in the brand name. This is a pretty large range. I still opt for the generic because it's a hell of alot cheaper.

http://www.consumer-health.com/services/5CommonQuestionsAboutGenericDrugs.php
 
Yeah ive tried the generic version of Keppra XR back in November 2012 and it lasted a couple of weeks with auras, then went into full blown seizures. Once I was put back on the name brand, it all went away. According to my neuro's nurse, the previous one... she said Im just sensative to how these drugs are made, and Im needing the name brand for the Keppra XR. As for others, she said I can only try and see what they do. I wish I could have the generics, just for paying less... but when I get the seious side effects listed on the medications, I just cant ignore them and go on with taking the medication.
 
Kristin,

It sounds like you need to have the name brand rather than generics as there is a difference in their manufacturing as well as the price. I can only do brand name meds because of the serious reactions. Otherwise, I'd still be in and out of hospitals, too.

I was once on name brand Trileptal and could not tolerate it for long because of the low sodium side effect.
 
I did hear back from the neuro office and they got me in with the neuro my primary care dr recommended. But I wont be seen til March 19. In the meantime, they wanted to try me on Lyrica. But after looking at info on that, its just like Neurotin, which I tried back when I was in my teens and had to be taken off of it due to violent behavior. I told this to the nurse, and then she tells me the dr wants me to try the Lyrica? Its practically the same thing. Nope, I wont be trying that. I had to call the pharmacy and tell them not to fill it.

As of now, because I feel like this neuro Im seeing is just throwing medications at me, and not reading my chart, Im going to hold off on any medications til i see this new neuro in March. If the seizures get worse, Im going to the ER. But I cant handle financially at this point, trying all these different medications, and if they dont work, waste the money on them. For the name brand, at the pharmacy, one month supply, it runs me $40. The generic is $10. My gut tells me I need the name brand, but I keep thinking about what if this doesnt work like with the Topamax... I paid $40 for that, used it for a week, and had to stop becuase of the reaction I had when I hit 50mgs. It was a huge waste in my eyes. I just dont want to keep throwing money out of the window on all these medications. So, for now, Im going to pray to god the seizures are not bad, and try holding off.
 
Can they give you samples so you won't have to spend all that $$?
 
I asked and she said they dont have any samples in their office. :( So, i guess I will just see how the next few weeks go and pray for the best.
 
Trileptal was great for me--worked super well at controlling my seizures. Unfortunately, I was on it too long and it messed up my sodium in the end. But before that happened, it was a fantastic drug. Very few side effects and very effective. Good luck!
 
If you reacted to the generic, check on your bottle who the manufacturer was. A different brand might be okay if it was the fillers you were reacting to. My neuro said that if I ever reacted to one generic, just tell the pharm that I couldn't take that one. There are many generics for Trileptal. I've taken them all. Can't afford the real one.
 
For now, Im going to wait this out. I found out today that the dr who I was suppose to see on feb 7th, finally approved me as a new patient, but I cant be seen til March 19. Til then, Im tired having to deal with this nurse with the neuro I saw on the 7th. Its one thing after another with her, and when it comes to the dr, he's telling me to take a medication which I took years ago, and had a very bad reaction to. It just doesnt make sense why he would tell me to retake it when Ive already tried it and didnt have a good experience at all. If things do get worse, I will be going to the ER. But Im just tired of arguing with these people. I want to get this all squared away and sit down with this new dr and go over all this stuff with him. based off of this review ratings, he sounds like a very good dr.
 
I hope things get better for you with the new guy--and good riddance to the old guy!
 
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