My neurologist prescribed carbamazepine for type 1 TN. Does anyone only take this medication only when they are having relapses or is it best to take it all the time even when there are no TN issues? BTW- I also have RRMS.
I always stopped it when in remission and started up again when i got slammed.It was a nasty med for me,but it did help with the pain.
I only had one major attack a couple weeks ago and weaned myself as soon as possible because I don’t want to get my body used to it. But I’m still not sure if there is a therapeutic benefit to staying on it. Anyone know?
Hi Christy-- I also have RRMS and have been taking carbamazepine for the last several months at 500 mg as prescribed by my neurologist. My episode with TN was so horrendous that I am afraid not to take it. I also feeling slight TN tinges during the day to remind me that the tiger is just sleeping. It took several days for me to get use to carbamazepine but now am very grateful. I think now several months into it that some of the effects are being unable to recall certain phrases or names. For example, not being able to remember the name Starbucks... but rather said to my husband... "you know that place where we buy expensive coffee" LOL. I am grateful but do feel kinda in a fog. It has given my life back. I have read that it is recommended to try to reduce your carbamazepine medication every six months to be sure you still need it. So I think that I would use it when needed, knowing that it takes time to build up in your bloodstream. And I would for myself only change the amount that I am by 100 mg at most every week. And never change more than that. But since this is a epileptic seizure drug I would definitely talk to my doctor about my plans. The pain will definitely let you know what you need to do! I do think if the pain is hanging on I would not be too eager to get off the drug as that I have heard that you don't want to get those nerves agitated as it takes time to settle down. I hope these thoughts are helpful BUT talk to your Doc!! :) Tina
My understanding is that there is no therapeutic benefit to staying on carbamazepine other than to reduce the pain. If I was not feeling pain I would not be on it. Maybe some others could weigh in. Of course your doctor would have the final word. :) Tina
To use for breakthrough pain, and have less meds,
Call dr. in for prescription lidocaine patches for face...... can lower or remove pain up to 12 hours!!!
Kc Dancer- do the patches have any side effects? I will put it on my "list of questions" when I go to my Neuro next month.
Thanks everyone! Your input and shared experiences are so helpful as I continue to move through this maze!
Kc Dancer Kc said:
To use for breakthrough pain, and have less meds,
Call dr. in for prescription lidocaine patches for face...... can lower or remove pain up to 12 hours!!!
I did not get on with Carbamazepine, suffered horrendously with side effects; constipated one minute, diarrhoea the next, confused and slow to recall basic things, constant nausea and dizziness! Am now on Gabapentine
Oh,I thought that was normal.Just kidding(kind of) I had all those symptoms but for the nausea/dizzyness.If i relapse(Praying i won't...Had a GK procedure) i may look into Gabapentine.Many here are helped by it.I had to take a LOT of Carbamazepine my last episode and it helped some but very little.It was a doozy that wouldn't leave.Peace and love to all.
Wraggy said:
I did not get on with Carbamazepine, suffered horrendously with side effects; constipated one minute, diarrhoea the next, confused and slow to recall basic things, constant nausea and dizziness! Am now on Gabapentine