Oxcarbazepine (trileptal)

Has anyone tried Oxcarbazepine? My husband is currently on Carbamezapine but have some side effects, fatigue, muscle and joint pain and some shortness of breath. The phamasist says this new one has less side effects and does not affect the liver.

I am on it... my doctor assured me that the side effects would be gone within 3-4 weeks. I don't have those issues, though I read they are common. I have stomach upset and a feeling in my head like there is a merry go round even when I am sitting still. Fighting it right now. I will probably nap in a few minutes because of that.

I know it always takes some time for the body to adjust. We are hoping to see the Neurologist soon and just wanted to know if this works for someone else. What is your dosage right now? and are you getting pain relief?

I am currently on gabapentin at 2700mg, and the oxcarb at 600 mg daily. I am new to TN and this has stopped most of the pain for 14 days. That is a huge improvement, let me tell you!

I've been taking trileptal for a little over 10 months. And still get the sleepies right after i take it. I cant sit still for to long because of it. However i have to say this is the only one so far that has brought some control over the pain. im taking 1200 mg daily.. 600 in the morning and 600 in the evening. When i tried to up the dose from there, My body refused and i started getting stomach pains and was so nauseous i couldnt move. I had to go back to the 600 mg. And have tollerated it well. The feeling airheaded is something that i dont think ever goes away. I wish you and your husband the best=) Pain free days=)

Thanks for replying Lisa. I appreciate your input here. My husband Peter, was diagnosed in Feb 2005 and had MVD in August 2005. He has had 4 flare ups in the past 6 years and the Carb usually takes care of the pain but he has to be on the full dose of 1200mg per day. Even with the periodic flare ups, it does usually go into remission and he at least gets a break from the meds. This latest flare is taking a little longer to get under control but I think he was not on them long enough this time for the nerve to settle down. I am glad you are getting some relief from the pain.

Oh, so glad I found this thread today! I was just put on Oxcarb today (600 mg daily) - my first visit to a neuro and he was shocked at how low my Teg dose was (400mg daily)...he said I should be double, even triple that amount!! uggh...no wonder have not have relief since it all started almost 6 months ago!! I am anxious to start this - Lisa, you have given me hope!! I know just from reading your entries how you have suffered and I am so glad to hear you have some relief!! I am anxious to be able to do my job with SOME resemblance of intelligence and be able to live SOME portion of life without pain that simply puts me down, like it has this last little bit...

Neuro wants me to have a MRI done as well...he talked of a radiation procedure that is "more effective than the gamma knife ... have had tremendously successful results..." wish I has written down the procedure he said, but he was just talking in generals - he wants to go to the end of the med's avenue before talking procedures; fine by me!

Again, thank you all for your input! - invaluable info (and plain 'ole venting here!!) :)

I have heard from other friends in the medical industry that not all GP's know the correct doses for neurological therapies and that this is best in the hands of the specialist. Glad to hear you got some good news and new hope!!

Hello, I have been taking Trileptal since January 11th. I started at 300mg twice daily for one week but that was not strong enough so my neuro increased it to 600mg twice daily. Plus I take hydrocodone as needed. I don't have any noticeable side effects so far. Every once in awhile I will type a word twice when I am posting here, but I think that is pretty tame compared to some of the others. I am doing pretty well with it.

Shannon, I was wondering how do you know that you are in remission? What are the signs or do you just wean yourself off your meds, (with dr. approval of course) and see what happens? Do certain symptoms stop like burning face? I would love to know. Perhaps you could ask Peter. I feel like I will be taking meds for the rest of my life! thx

Because my husband has had the MVD procedure, he has episodal pain not constant pain. He therefore goes for longer periods without flare ups. When he had his first flare up 4 months after the surgery, he went back on the Carbamezapine (as perscribed by Neurosurgeion) 1200mg per day for 2 months, then 800 mg for 1 month, then 400 mg for another month. It seems that if he gave himself a good 2 months on the 1200mg it settled the nerve down and he had no pain, however he was extremely moody and easily agitated although working in a high stress environment did not help. Peter says you just wean yourself off the meds and take a chance. Peter says that all the symptoms stop, even the burning face but you trade that for being easily agitated, moody, and fatigued. Once the dosage is lowered these side effects go away. The higher the dosage the more severe the side effects....but not everyone is the same and not everyone has these experiences. After the first flare up following sugery, he was pain free for 4 years until his next episode

VERY important

if your husband is having shortness of breath

call your pharmacist (they are very under-used knowledge)

he could determine - not a good side effect! IF that is from this med --- I did not have this on it

My new neuro told me that after 4 weeks of no pain, that you can start weaning yourself off the pills to see what happens. I have not made it that far yet.

kimburlee said:

Shannon, I was wondering how do you know that you are in remission? What are the signs or do you just wean yourself off your meds, (with dr. approval of course) and see what happens? Do certain symptoms stop like burning face? I would love to know. Perhaps you could ask Peter. I feel like I will be taking meds for the rest of my life! thx

I have been on Trileptal for almost 1 year and for me it has the fewest side effects. I do have extreme fatigue some days. It is effective at controlling the pain. I take 900 mg daily(300mg 3x). I was on neurontin and lyrica previously and neurontin was fine at 900mg for 10 months and then extreme brain fog. Lyrica took 6 weeks and I had the same brain fog, balance issues and listlessness. Good luck and I will pray for you.


Thank you guys for all your input. I cannot tell you how invaluable this site has been for me in just the 2 days I have been on here. I had no idea there were so many different meds for TN as we have only been told about the Carbamezapine. Now knowing we have a choice of different meds without all the side affects and that my husband does not necessarily have to feel like this while he is on them, is truly enlightening. I am so thankful to those of you who have replied to this thread. Shannon

Shannon.Yeh, I have taken Tegretol, Lyrica, Neurontin, and I like Trileptal the best as far as not being loopy goes. LOL.

Shannon, we are all glad to help your husband get the right meds for his pain. God bless you. Stay in touch.


Wow, I feel like a bit of a baby after reading some of the quantities of Trileptal being taken by my friends here. Previous to reading this thread, I had a more woe-is-me attitude Meds-wise. I imagined that I was dancing alone on the outer-edge of the med world, in a land where few others tip-toed.

I was wrong. Very wrong.

Years ago (maybe 5-6), I had a flare-up that took longer to calm. In the midst of my fear that the spasms and pain would never quiet (so far, they always have) and a significantly increased quantity of Neurontin, up to 3600 mg a day, my neurologist prescribed Trileptal.

I remember taking the first 150 or 300 mg caplet and feeling like a mental patient in “One Flew Over the Cuckoo’s Nest”. I was immediately Zombified and I felt as if I was a hair-away from sitting comatosed, drooling in my shoe. I tried the second caplet and no change. I told my Neurologist that I couldn’t take it and he told me to stop.

Last Spring, I had another flare-up with a meaner pain and duration profile that wouldn’t stop with Neurontin, despite my taking mega-amounts. I called my Neurologist and cried-out for help. He prescribed the Trileptal again and I, after reflecting about my previous reactions, quickly said yes. I was tortured. I would have said "yes" to anything. Within a day, my spasms were reigned in and en-route to being quieted. It was magic.

Since then, the magic has failed me twice.

I have taken doses as high as 1200mg. I am now taking 900mg of Trileptal and 1200mg of Neurontin. My spasms have receded and are now gone.

But I am very discombobulated. I am not laying down tracks of new memory. I feel a bit like I would imagine an Alzheimer's victim might feel. I also have lost my normal powers of observation. I have become disturbingly oblivious to many of the details of life around me. I am very tired as well. I like to wake up early, say 5AM…but by 11 or 12, I feel like taking a nap…by 8-9PM, I go to sleep. For years now, I have taken all kinds of PM sleep inducers: Tylenol PM, Simply Sleep, etc. to make going to sleep and staying asleep easier and more dependable. For two months now, I haven’t taken a one.

I’ve also gained a lot of weight. Has that happened to others?

And finally, driving…understanding the enormity of this responsibility and the potential dangers to all while on these meds, I make a check and double check effort to be extremely cautious and deliberate while I drive (yet notwithstanding, I average 2.3 apologies per every 10 miles.)

Like I said in my opening, I thought I was alone in the measure of my dosing. And because of that, I think I lavished myself with a bit more of the: “woe is me’s” than I deserve.

Thank-you all. I particularly thank those who are taking 1200mg a day for sharing.

I’m going to have a stern talk with myself after posting this message.

Good luck all.

nonchiaro - you are one of the wittiest writers I have seen on this site! You should write a book about TN - I would buy it and read it. I was started on the Oxcarb a week ago and had alot of stomach issues with it. However, I went back on Lyrica and cut the Oxcarb in half to take with it. I am hypersensitive to all meds. I also have mostly Atypical pain with type 1 breakout pains. The lyrica helps with the ATN and the Oxcarb is helping with the TN. I am on very, very low doses of both meds. My Oxcarb is 150 mg and I take half each night. It has not made me sleepy at all and have to take a low dose doxepin and Xanax to get to sleep. I still have some stomach issues each day with the Oxcarb and it really causes alot of acid reflux for me. Good luck with this med and just be sure to read all the side effects for it. There is alot of info on the web, especially stuff the drug companies don't always reveal. I am so sensitive to everything myself that if the drug companies say some side effect is rare, I can guarantee I will have it.

Dear D-Mac, thanx for your kind words and your personal insights...oh, and that ouchy smile about rare side-effects and your guarantee. What I failed to stress in my comments and a really really important part of my message 'bout my first reactions to trileptal was: "i got used to it-kinda". At first try, I also became dizzy and stomach sick with tril., sorta like a motion-sickness head and stomach and now, 5 years later under the pressure of a greater necessity...a lot of that has gone away. I mean...especially considering these day's dose is a lot more than those day's dose. I hope that you are going through a process that will land you in the "got used to it-kinda" bracket as well, or better...soon. Thanx D-Mac, stephen.