I started taking Trileptal (oxcarbezipine) about a month ago. My doc has been slowly titrating me up. Last Monday, he increased the dose to 900 mg twice a day. i have been having a lot of dizziness since he upped it but that is not my biggest concern. I figure the dizziness will get better once my body gets used to this amount. What I am really concerned about are two other things. This morning I woke up and my ankles and feet are really swollen. So much they kinda hurt. Also, I realized yesterday, that I haven't been using the bathroom as much and when I go it isn't as much as usual (I mean urinating). i read that these could be serious side effects of the Trileptal. Has anyone else experienced this and if so what did you do? I am finally starting to feel better and I will be upset if I have to stop taking this stuff!!
Please respond asap as I am taking my son to the doctor this afternoon (same doc as mine) and I am wondering If I need to talk to him about it then.
Hi Karen, I’m not familiar with Trileptal, but anytime you have a concern especially regarding decreased urination or swelling of ankles etc you need to bring this up. I know that swelling (edema) can be a side effect of many of the meds we as TNers take, but I would definately bring it up ASAP
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Karen, I take it. I would talk to him about it. Definitely. I do get swelling occasionally. But not like that. I do have decreased urination. But I take 1200mg and it is not a REAL big deal I did worry at the beginning but I try to drink lots of water to compensate especially since I take topamax too and it can dehydrate ya so I have to drink lots of water. But the swelling concerns me so I would talk to your doctor. :)
so I took my son to the doctor and mentioned to him about the swelling and bathroom issues. He was in a hurry and told me we would talk about it at my next appt which is next monday. So I guess i will just have to deal with it until then. Thanks to those who responded!!!
Hi Karen. Trileptal/Oxcarbazepine has lots of documented side effects, as all of these anti-seizure drugs do. Decreased urination is definitely a side effect for some people. Drugs.com is a good sight to enter a medication and provide you with a list of side effects. I have personally found that being on a higher dose of Trileptal or a higher dose of Gabepentin turned me into a sleepy, unrecognizable zoombie boy with bad memory, coordination issues, my brain that was not smarter than a 5th grader, etc. Since I have been on both of these drugs at the same time, and at lower dosages, that the pain is better controlled and I have much fewer side effects. Push your neurologist to try different combinations that aim to give you a better quality of life. Make sure that you properly wean yourself off of one drug before moving to anything new. Educate yourself as much as possible through this sight or my favorite "Striking Back" book. Education is power and a lot of neurologists don't see too many patients like us, especially if you live in a smaller community, which I don't know if you do or not. Anyway, good luck and may your pain and side effects become manageable!
Thanks y'all for you replies!! The last few days have been awful!!! I have been so dizzy that I have not been able to function. I have been on the new dose of Trileptal for 11 days and I don't think my body is going to get used to this amount so that the dizziness will go away. I am on 1800 mg. a day. My husband and I talked about it and decided to go back down to 1200 mg. ( that was the dose I was on before this last increase.) I feel alot better today at the lower dose, hardly any dizziness. The bad thing is that I was feeling less pain on the higher dose. But I can't function on the higher dose. I guess it is a balancing act.
and before anyone writes and tells me I shouldn't change my meds without talking to my doctor, it is nearly impossible to get a hold of him by phone and I have an appt on Monday so I will let him know then. I just could not take another day with the dizziness. But thanks for your concern.
I also had decreased urination. Also see if your doc can offset with other meds so you don't have to go up. I used klonopin, tramadol, and topical lidocaine RX. Trileptal was awful.
Thanks for the advice! I use lidocaine patches. I have tried tramadol and it doesn't help me. I have never used klonopin. Doesn't that make you sleepy. From what I have read, it is very sedating. Has this been your experience,tkal?
What other meds have any of you been on with Trileptal? I can't remember if I said this earlier, but I also take Baclofen, Nortriptylin, and MS Contin. I think I remember maybe seeing some on here taking Lyrica with Trileptal. Anyone have any experience with this? I am currently seeing my GP since the pain clinic I usually go to is 1 1/2 hours away. He doesn't have a lot of experience with TN but he is willing to try almost anything I ask him to try. He has been my doc for 15 years and we have a great doctor/patient relationship. So if I go in and ask him " can I try this med?" as long as he doesn't see anything wrong with it, no contraindications, he is fine with it. My last appt I asked him if he would write me a script for the patches and he said, "Okay, i think I would try just about anything not to see you in so much pain."
tkal said:
I also had decreased urination. Also see if your doc can offset with other meds so you don't have to go up. I used klonopin, tramadol, and topical lidocaine RX. Trileptal was awful.
Klonopin can be sedating. It's often used for those who have chronic anxiety but I take it at bedtime. I originally started it for pelvic pain but it's also used for TN. An off label use. Eventually I added .5 at lunchtime for breakthrough pain. at .5mg it's not really sedating but I've been on it for years so I may have built up a tolerance. It sure worked though. It "really takes the edge off, dude." It really does help.
I had to go off trileptal because I started vomiting about 3 times a week and no amount or type of nausea meds helped. I am now on nortryptaline, klonopin, tramadol. Right now nortryptaline helps. I hope it stays that way for a long time because I'm having very few side effects.
Tina
Karen said:
Thanks for the advice! I use lidocaine patches. I have tried tramadol and it doesn't help me. I have never used klonopin. Doesn't that make you sleepy. From what I have read, it is very sedating. Has this been your experience,tkal?
What other meds have any of you been on with Trileptal? I can't remember if I said this earlier, but I also take Baclofen, Nortriptylin, and MS Contin. I think I remember maybe seeing some on here taking Lyrica with Trileptal. Anyone have any experience with this? I am currently seeing my GP since the pain clinic I usually go to is 1 1/2 hours away. He doesn't have a lot of experience with TN but he is willing to try almost anything I ask him to try. He has been my doc for 15 years and we have a great doctor/patient relationship. So if I go in and ask him " can I try this med?" as long as he doesn't see anything wrong with it, no contraindications, he is fine with it. My last appt I asked him if he would write me a script for the patches and he said, "Okay, i think I would try just about anything not to see you in so much pain."
tkal said:
I also had decreased urination. Also see if your doc can offset with other meds so you don't have to go up. I used klonopin, tramadol, and topical lidocaine RX. Trileptal was awful.
Since decreasing the Trileptal on Thurs. the dizziness is almost completely gone! I feel so much better. I just couldn't function! But since we decreased the dose the pain is worse, not horrible right now. I never know what this thing is going to do. I can feel pretty good in the morning but at any minute, like an animal waiting too pounce, I am taken down!
The swelling has gotten better also since I decreased but not the bathroom. I guess I just have to drink a ton of water which is a good thing.
I see my doctor today. Not sure what I am going to do. Keep going the way I have been or try something new.
Thanks everyone for your help! I really don't know what I would do without y'all! How did I manage for 3 years without y'all? :)
Tkal, what all were you on when you were vomiting and how much?? If you don't mind me asking?? I have some nausea issues, but it's only when I eat something that does not agree with me and it is reallly bad...... and I think it is from the Trileptal, so I was wondering if you had this kind of reaction too.??? My mouth waters real bad and I think I am going to throw up but I don't actually do and then I have the other problem........
Karen, one nuance that others may have overlooked: 1800 mg/day of Tegretol is above the recommended dose level of 1200 mg/day. The benefits of increased dose appear to be marginal above 1200 -- and 2400 mg/day is rarely well tolerated.
Thanks, Red! My doctor at my appt yesterday agreed that I should stay at 1200mg and that increasing it would not be a good idea because of the horrible side effects I was experiencing. My symptoms have definitely improved since starting this medicine, but I am still having a lot of pain. Should I just accept that this is how it is going to be, the best it is going to get or should I keep pushing, try adding other meds until I get where I want to be, and if so, what? (Note: I am also taking Baclofen, Nortriptylin and MS Contin, also Lidocaine patches) I think if this is as good as it is going to get, I am going to have a hard time accepting it. This is not how I wanted my life to be!!!!
Richard A. "Red" Lawhern said:
Karen, one nuance that others may have overlooked: 1800 mg/day of Tegretol is above the recommended dose level of 1200 mg/day. The benefits of increased dose appear to be marginal above 1200 -- and 2400 mg/day is rarely well tolerated.
Karen: I'd say push, with the help of your doctor, to find a better combination. There are 10 or 12 meds in the same class with Nortiptyline, and each of them has a slightly different profile of effects. Likewise, your doc might try you on a different balance of primary and booster meds, possibly replacing Baclofen with something like Flexeril, Phenoiten, or low-dose Valium. Be careful of MS Contin as it tends to create dependencies.