My neuro just swtiched me to Carbamazepine 400 mg every twelve hours. I was taking 500 mg over a twelve hour period of the regular Carba but was having lots of break thru pain. I have struggled with being able to take any of the typical meds for TN. Please tell me your opinions and experiences with Carbamazepine slow release. Excuse the spelling and grammar mistakes but I am pretty "stoned right now from my first dose at 400 mg. I took it 1.5 hours ago.
I can relate to being stoned, LOL! I take 400 of it THREE times a day. We tried to do 600 twice a day, but I was so drunk on it that it made me sick. I had to sleep it off. So I decided to do 400 three times a day. I have adjusted to it, so now I am just tired a lot, but sometimes I don't sleep good.........does that make sense? I am also forgetful and can't think of the right word for things sometimes, but that is about all of my side effects. Let me know how you adjust.
Do you have better pain coverage with the slow release?
Hi Patty,
On regular Tegretol I had a lot of breakthrough pain…when my neuro switched me to the slow release, I had pain relief with no breakthrough at 800mg for a long time.
It worked better for me.
Give it time… I took 200 mg x2 in the morning, x1 at noon and x1 in the evening…
Eventually I switched it up to x2 in the a.m and x2 in the pm…this worked best for me.
Good luck, hope you notice a positive change soon!
(( hugs)) Mimi
Right now the plan is to take 400mg every twelve hours. Yesterday I was convinced that the pharmacy had given given me sugar pills. I have not had such pain since before I was diagnosed last spring. The pain seems to be changing too. Right now I am almost convinced that I should have all my lower teeth on my right side pulled and my troubles would be over. The pain is also going into my ear at times. Another strange thing is that the position of my head and or neck triggers pain. Has this ever happened to you? I guess my pain coverage was better than I thought with the regular Carba.
Patty, it does take time for your body to adjust to the different dose. 400mg in the am and 400mg in the pm worked well for me. Give it some time…If I remember correctly it took me about 10-14 days to have consistent pain relief with no break through.
Position of my head has never triggered my pain, but I’ve read of others that have experienced it.
I too have pain in my lower teeth and my ear. As much as I too would like my teeth pulled, that won’t stop the nerve pain… 
( I’ve already asked )
Hang in there…maybe a heating pad to take the edge off?
(( hugs ))
The heating pad works well for me too. Thanks for the encouragement. I will stay the course for at least a month.
I found that the slow release was helpful with the sleepiness and worked okay when my pain was not severe. However, it didn't seem to provide the same relief as the regular drug when my pain levels increased. I went back and forth using each when it best suited me. I adjusted my dosages around my work schedule so I could function. I took higher dosages right before bedtime (400 mg) and then waited as far into my work day as I could before taking more so that I wouldn't fall asleep at work. I usually started to feel the drowsiness about an hour after taking my meds so by using this method, I could be home before the worst of it hit.
For the most part, I was able to get by with 200 to 400 mg a day - going up to 800 mg when necessary. I also made use of 100 mg tablets throughout the day to supplement if necessary. Luckily I had a neurologist who was willing to write my prescriptions and let me adjust my dosages as necessary. I lived this way for about 6 years until I had my MVD. Right before surgery, I was taking 1200 mg Tegretol and 2400 mg Neurontin daily. When you reach this level of meds, I don't think it's possible to continue life as usual. That's when I had to have surgery. Ask your doctor if he/she will work with you and write you Rxs for various dosages and types of Tegretol so you can adjust for your own personal needs. Good luck with your treatment.