My neurologist recently took me off of Tegretol (Carbamazepine) and put me on Trileptal (Oxcarbazepine). I've experienced terrible side effects with both medications, which make it very difficult to function (especially at work). I'm trying to tough it out in hopes of some relief from the pain, which I did find while on Tegretol. I've only been on Trileptal for 2 days and the side effects are already present, but the pain relief is not. In fact the pain seems to be worse now than it was prior to starting the new medication. Has anyone else experienced worsening pain on Trileptal (Oxcarbazepine)?
I was started on Gabepentin (900 mg, then 2700 mg) but had too many side effects, so they switched me to Trileptal. Started with 600 mg per day. I had less side effects than Gabepentin but more stabbing pains in my forehead. They did throw in some Clonazepam that is now almost out of the mix and increased the Trileptal to 900 mg per day. It’s only been 4 days on the higher dose but I am having less pain and the side effects haven’t increased. Only time will tell. What dose of Trileptal are you on?
I found when I first started on trileptal the less severe pain was gone but the really bad pain didn't decrease and seemed more noticable (sp) until I was on 750mg 2x day. But it did go away. Just hang in there until the dosage is right. The side effects also get better once you get on the right dosage for you. I am on a relatively low dosage right now. I have room to go up if the pain gets too bad. But I rarely have breakthrough pain. Keep us informed on how you do. If it's only day 2 you should be able to go up on day 3 or 4.
Call your pharmacist if you have any questions too!
I lost my IQ on that med - lucky that was my only side effect --- had MVD surgery
and off trileptal and IQ is back now I THINK LOL
They started me out on 150 mg twice daily. I guess that's a very low dose, but I can't imagine being on a much higher one. I'm a wimp when it comes to medication side effects though. I feel every little side effect of anything I take. :( I also have a low pain tolerance though, so I guess I have to choose the lesser evil. I also take Zoloft and Clonazepam for depression and panic attacks. I rarely take the Clonazepam (only as needed) so maybe it would help if I took it more often. Food for thought anyway. Thanks for your reply. :)
Brad said:
I was started on Gabepentin (900 mg, then 2700 mg) but had too many side effects, so they switched me to Trileptal. Started with 600 mg per day. I had less side effects than Gabepentin but more stabbing pains in my forehead. They did throw in some Clonazepam that is now almost out of the mix and increased the Trileptal to 900 mg per day. It's only been 4 days on the higher dose but I am having less pain and the side effects haven't increased. Only time will tell. What dose of Trileptal are you on?
Thanks tkal. I'll try to hang in there and give it a chance. I know it takes time to adjust to new medications. :)
tkal said:
I found when I first started on trileptal the less severe pain was gone but the really bad pain didn't decrease and seemed more noticable (sp) until I was on 750mg 2x day. But it did go away. Just hang in there until the dosage is right. The side effects also get better once you get on the right dosage for you. I am on a relatively low dosage right now. I have room to go up if the pain gets too bad. But I rarely have breakthrough pain. Keep us informed on how you do. If it's only day 2 you should be able to go up on day 3 or 4.
LOL Kc Dancer Kc. I think I'm losing my IQ too. I REALLY lost it on Tegretol. I knew it while I was taking it, but it became even more obvious once I was off of it. That side effect seems a little less with Trileptal, but I'm afraid it will get worse if they increase the dosage. That's the most frustrating part for me. I can't afford to lose my mental clarity and still function at work. Thanks for your reply. :)
Kc Dancer Kc said:
Call your pharmacist if you have any questions too!
I lost my IQ on that med - lucky that was my only side effect --- had MVD surgery
and off trileptal and IQ is back now I THINK LOL
How much of the Trileptal are you on? That's the only one that has worked for me, when I first got TN in August 2010, I was on 150 mg, for 2 months then it stopped completey until November 2011, the same thing happened, but when I got it in April this year, it kind of stopped working, the Dr. gave me Tegetol 200 mg and that made the pain worst and my cheek was burning worst than eve. I went back to the Dr. and prescribed gabapentin 300 mg, and I thought I was going to die one night becasue of thepain!! I had to tell the Dr. to make the Oxcarbazepin higher, he prescribed 300 mg. I kept taking the Oxcarbazepin 150 mg more often by cutting the pill in half, instead of a whole pill.
I went to see a Nerosurgeon and he prescribed 10-20 mg of baclofen before I got to bed, plus Lyrica. The Lyrica did the same thing that gabapentin did, so I stopped it right away and went to back Oxcarbazepine.
Last night, I took a combination of both (10 mg. of baclofen and 150 Trileptal), at 8 or 9 pm, which is when the pain usually starts getting really bad every night. When I went to bed at 1:30 am (watching a movie), I took another combination of both), and fell asleep, then I woke up with pain at 3:30 am, took another combination of both, and at around 5:30 or 6 am, woke up with pain again and took another combination of both. When I finally got up at 9:30 this morning I did not have the pain as bad and I was able to eat break fast without pain.
Hello. From what I have been hearing, and my own experience, it sounds like you've been on some pretty low doses. The reason I am getting weaned off of Clonazepam is because it turned me into a zombie. Funny how we all react differently to meds. They had me taking .5mg Clonazepam twice a day in addition to the Trileptal. Will soon just be on a higher dose (900 mg per day) of Trileptal. I am concerned about losing IQ points as KCdancer pointed out happened to her when she was on Trileptal. I guess we are all trying to find that balance of the right medication and the lowest amount so that we don't have the horrible pain AND we can function reasonably well. I hope we all find it. Good luck to you.
GinRebekah said:
They started me out on 150 mg twice daily. I guess that's a very low dose, but I can't imagine being on a much higher one. I'm a wimp when it comes to medication side effects though. I feel every little side effect of anything I take. :( I also have a low pain tolerance though, so I guess I have to choose the lesser evil. I also take Zoloft and Clonazepam for depression and panic attacks. I rarely take the Clonazepam (only as needed) so maybe it would help if I took it more often. Food for thought anyway. Thanks for your reply. :)
Brad said:I was started on Gabepentin (900 mg, then 2700 mg) but had too many side effects, so they switched me to Trileptal. Started with 600 mg per day. I had less side effects than Gabepentin but more stabbing pains in my forehead. They did throw in some Clonazepam that is now almost out of the mix and increased the Trileptal to 900 mg per day. It's only been 4 days on the higher dose but I am having less pain and the side effects haven't increased. Only time will tell. What dose of Trileptal are you on?
You are not alone, but things will get better. i had the same experience. After taking 600 mg of Tegretol for two weeks my pain was even worse. My doctor increased the dose to 1200 mg and that helped some with the bad pain but the still had a lot more discomfort with the sharp pain. My neurologist took me off of Tegretol and started me on Trileptal -600 mg a day. My pain worsened, it turned my life upside down...i was worse than a zombie. The side effects were terrible...i could not drive or do anything anything a normal personal can do. My kids were terrified as they thought the were loosing their mom. After one week i thought my life was over since I rarely experience bad side effects from meds but this was way too different! My neurologist encouraged me tough it out while she increased my dose to 1200 mgs a day. With a little patience, and an ounce of optimism i hanged on and i cannot tell you how iam happysince that was the right dosage for me...my pain is down significantly and i am so thankful. After one month on Trileptal, i feel so much bette r, no more side effects, and now i have reduced the dosage to 600 mg a day. which i have tolerating fairly well for the last couple of weeks. I can say that for some time now i have been gradually getting my life back after several week and months of pain. Hopefully the Trileptal will work for you but you have to adjust the dosage (with the help of your dr) accordingly to see what work. Its too early to tell after only two days ...hang in there. It gets worse before it gets better!! Mybest wishes to you.
Well, after a couple of weeks the side effects from Trileptal did get better. For me it's been a lot less effective than Tegretol though, so my neuro wants to increase the dosage to 300 mg twice daily. I took the first 300 mg dose last night and slept until 11:00 am this morning! I'm scared now because it seems as though he doesn't want me to take Lortab anymore. I understand that to a certain degree because it is a narcotic, but if it helps me how much worse could it be than any of these other medications? Oh well, hopefully the higher dosage of Trileptal will help me more.
You can ask to take the lortab for days when the regular med just won't touch it -- just as needed perhaps
OR
While going up on a med is helpful too
OR - get a new doc!!!! They have no clue what this feels like
Hi there - Just filled a prescription but haven't started Oxcarbezepine yet. I've been medication free since I had MVD 6 mos ago and am now having recurrent pain :-( The IQ thing really worries me - between menopause and medication I'm screwed! All thought processes slow down. I hope it won't "dumb me down." Can't afford it at this point!
I hope you responded well to your surgery.
Thanks,
Jeej
Kc Dancer Kc said:
Call your pharmacist if you have any questions too!
I lost my IQ on that med - lucky that was my only side effect --- had MVD surgery
and off trileptal and IQ is back now I THINK LOL
I was on Trileptal and ya, I got pretty dumb. I couldn't drive either. I had to stop because of vomiting every day.
A couple of tips.
If you get nausea, you can get more meds from your doc but I never found them to work very well. I started chewing ginger candies and those helped a lot. You can get some kind at your grocery store where they sell the not so popular candy. Reeds and Chimes are good. But you have to suck on them constantly (a small bite as ginger can be a little hot if you have to much at one time.) because it will constantly be entering your body. Ginger tea is good but the nausea comes back once you stop sipping.
I just learned that many people take Ritalin while on these kinds of meds. It doesn't interfere with the pain killing properties and helps people concentrate, focus and gain some IQ points back. I'm on Ritalin now for a different reason and for me it's more sedating than klonopin but I get the same thing with dexadrine (an amphetamine). Most people get the opposite reaction than I do.