Hi folks. Just an update on medication. I did post on here a while ago about side effects of pregabalin to see if anyone had any advice. However, since then I've had to stop that particular medication due to side effects and not being able to function (which I'm sure a lot of you can relate to!).
I have a lovely GP who wasn't sure what to do with me so she said she wanted to ring my consultant for his advice. He said we should stop the pregabalin and replace with oxcarbazepine, (this is the 4th anticonvulsant I've tried) as although I was unable to tolerate carbamazepine I might be able to tolerate this one. He's right, it does help with the pain and initially I was really 'spaced out' with it but a week or two into it I seem to be tolerating it better. The strange thing I find it that some days I seem to need a lower dose of it than others. I started off on 300 mg night and morning, now I take an exra 300 mg at lunch time too, and have been advised to take extra at night also if I need to. I am in more pain first thing in the morning, so I think I may add an extra dose at night to see if that helps (OR the consultant said to add in a pregabalin at night as well as the 300 mg dose of oxcarb.) I see my consultant in just over a week for MRI results and am kind of hoping I may be able to go back to work after that (scary!) I've already been off for nearly 8 weeks.
Anyway, just I thought I'd post on here to see if anyone else has found oxcarbazepine helpful?
I have in the last month started oxcarbazepine. Right now, I take 600 in am and 600 in pm. I was taking 900 am and 900 pm but was having horrible side effects so I have to decrease. ( see my post: Help! Side Effects from Trileptal...) Tegretol was the first med I tried and I couldn't handle it. Oxcarb. has been alot better.
Oxcarb. has helped a lot with my pain along with the other meds I take. ( Baclofen, Nortriptylin and MS Contin) I am better but not where I would like to be.
Thanks Karen. I'm still on Oxcarb 300 x 3 daily if I can stand it but it does turn me into a zombie, even though they tell you the side effects are less! I also take Lyrica x 1 at night if I need to. However I see my neuro tomorrow morning and want his advice as I can't function like this. I want to be able to get back to work but no chance so far! Will have to wait and see what he advises.
Hi…I have taken oxcarbazepine for about 2 years and now take 750mg in the morning and 750mg at night. The only side effect I have is low sodium levels. I get my sodium checked about every 3 months. I’m not allowed to drink any plain water and have to restrict my total fluid intake or I retain lots of fluid. I had a scare a couple weeks ago. I brought it on myself cuz I know better. I drank a pot of coffee and 2 diet COKES at work on night and drank my normal amout the next day too. I had a 10 pound water weight gain in 2 days. My legs were balloons and I was having trouble breathing. After some diuretics and salt intake I lost the weight in 3 days. I just have to be more careful. So, make sure u have ur sodium levels checked regularly. The med has worked awesome for me though. Most days I am painfree I am a nurse and work part time without any feeling of being drowsy or drugged. It does take some time to get used to the med though. Hope this helps!
Wow Lisa, the thought of what 750 mg of Oxcarb would do to me all in one go is pretty scary! I;m amazed you can function on that. I've not been told anything about restricting my fluid intake or sodium levels, but so far haven't had any problems with swelling (just the awful brain fog!). I have been on this drug for about 3 weeks now, but still feel drugged up to the eyeballs and get crushing headaches with it too. I see the neurologist tomorrow so I'm hoping he can come up with something!
I take OX and I'm up to the max of 2400 a day according to the literature. My neuro is NOT happy about it but it works most of the time and I don't want surgery. I'm pretty lucky with basically no side effects other than I can't remember stuff as well as I used to but I think it's time to try something new.
I'm amazed you can function at all on that dosage of Oxcarb Todd! I seem to be very sensitive to it (or any of the anticonvulsants) and could only take low dosage - even then they really affected my day to day living, although they did relieve the pain too.
Suzy, How did the dr appt go? Did he keep you on the Oxcarb?
suzy1 said:
Wow Lisa, the thought of what 750 mg of Oxcarb would do to me all in one go is pretty scary! I;m amazed you can function on that. I've not been told anything about restricting my fluid intake or sodium levels, but so far haven't had any problems with swelling (just the awful brain fog!). I have been on this drug for about 3 weeks now, but still feel drugged up to the eyeballs and get crushing headaches with it too. I see the neurologist tomorrow so I'm hoping he can come up with something!
Hi Karen. The neurologist says I must be extremely sensitive to Oxcarb, so suggested instead of taking 300 of it I should take 150 Oxcarb plus 50 Pregabalin and see how that worked for me. However since then I've had a spell of just being on Amitriptyline instead to see if I could manage without the anticonvulsants. Unfortunately the Amitriptyline only worked for a few days and then I was in agony. By Sunday I went back on the the Oxcarb plus Pregabalin, and today I'm fairly comfortable on this mixture, thank goodness -I don't want another day like yesterday it was sheer agony!! I have an appointment to see the neurosurgeon on 17th December about possible MVD. Are you still taking 600 am and pm?
Suzy Karen said:
Suzy, How did the dr appt go? Did he keep you on the Oxcarb?
suzy1 said:
Wow Lisa, the thought of what 750 mg of Oxcarb would do to me all in one go is pretty scary! I;m amazed you can function on that. I've not been told anything about restricting my fluid intake or sodium levels, but so far haven't had any problems with swelling (just the awful brain fog!). I have been on this drug for about 3 weeks now, but still feel drugged up to the eyeballs and get crushing headaches with it too. I see the neurologist tomorrow so I'm hoping he can come up with something!
Hi Shindig, thanks for your reply. I initially started on 300 x 2 daily which absolutely floored me - I couldn't function at that level at all, so I eventually asked for half the dose to see if that would be better. Fortunately 150 Oxcarb plus 50 Pregabalin seem to be working for me at present, although I suspect that like you I will need to increase eventually too. I tried Carbamazepine and Gabapentin and they didn't suite me either - you were on a very high dose of Gabapentin by the look of things! Have you had any surgery for TN?
shindig said:
I'm only on 300mg twice a day along with nortriptyline 50mg/day and it's a million times better than 2400mg daily of gabapentin was for me. I started on 150mg oxcarbazapine 2x daily but after a month it started to taper in effectiveness, then I took 1.5 pills, now I have 300mg pills and the neuro said we have a lot of room to increase it, but I worry about reaching the cap and having to find something else that works.
I am a nurse and work part time without any feeling of being drowsy or drugged. It does take some time to get used to the med though. Hope this helps!