Thank you so much for the warm welcome and advice! I was wondering if other people have had trouble getting used to carbamazepine(Tegretol). It makes me really tired. I’m not sure if that’s because of how it is mixing with the other meds (Vicodin, Butrans patch and a beta blocker for high blood pressure) or if that kind of reaction is typical. I’m only at 100 mg a day (half tablet at night). I’m supposed to gradulally go up to 600mg (a tablet 3 times a day). That dosage sounds really high. Does this tiredness go away?
Yes, it does SunnyJ, once you reach your therapeutic dose, and your body adjusts to the meds that tiredness should retreat. Every time you increase your dose you can experience more drowsiness .
At higher doses the drowsiness can stay…we’re all different and react differently, but do share your concerns with your doctor as he/she knows the whole picture with your other meds etc.
Hope you start feeling better soon, Mimi
I’ve edited to add that for me at 800mg/day I was able to live and function normally .
I’m currently on 1400mg /day for my left side TN.
I'm glad to hear the tiredness is not here to stay. Thanks much Mimi!
I wanted to respond to Tacocat's comment to me .(It is not showing up here for some reason although I received an email response so I will paste it below). I did not realize that taking the meds for Trigeminal Neuralgia could ever cause you to go into remission. I though that either you take meds for life (if they work for you) or deal with surgery. That is great news! Just curious how long Tegretol normally takes to start working? I started taking it under a week ago(after being diagnosed with Atypical TN). So far seems like the severity of the pain is better but the pain is far from gone. Is that usual for it to take a while? Thanks much!
hey sunny--
the good news is-- hopefully- the tegretol will put you into a good solid remission and you can go off all meds for awhile--maybe even years! I experienced symptoms like you are when I went on 200 mg, --but after a few months the pain subsided and I went off the meds-- been in remission over a year! Some people are on 12oo mg of tegretol-- so 600 is not an outrageous amount!! Blessings for a quick remission!!
I was once on Tegretol and I couldn’t walk and my speech was slurred. I was also taking Vimpat 200mg and Neurontin 300mg I believe. I took Tegretol 100mg twice a day. But my mom has found out (I’m only 17 and was 16 at the time) that say I get up at 6:00 every mornig for school-- the medicines “peak” time is 2hrs after I take it so my mom will wake up at 3:30-4:00 to give me my medicine so I’ll be asleep right when it peaks and wake up feeling refreshed besides wake up and two hours later I’m crashing. Hope the medicine helps!!
Sunny, I can tell you that my neurologist and I have always had an agreement that if the pain was gone for at least 6-8 weeks, then we would attempt to slowly reduce the dose.
The first attempt was my first year of diagnosis in 2002, I had TN for about 6-7 months when at last I started to have no pain on just Tegretol CR, by 9 months I was pain and med free !!
I have bilateral TN, my right side TN1 was in remission ( no pain, no meds) for 8 years!!
My left side TN2 was in remission for 10 years!!
There is hope…BUT that being said it can come back, and often when it does, it worsens…I didn’t know this back then.
If I knew, I would have researched more I think…I didn’t know about MVD and all the rest.
My right side is well managed with meds, but my left side became med resistant and worsened…so much do that it became TN1 as well as TN2, nothing touched the pain…I had an MVD in April of 2013, no compressions ever showed on any of my mris over the years. Yet 3 compressions were found.
I had 4 months pain free on Tegretol ( weaned off two other meds) and then my TN worsened again.
It is still slightly better because of MVD but not enough to allow me to work again or have any more surgical procedures. I believe the damage done to my Trigeminal nerve is done. But hoping that research finds a cure for all of us soon!!
All this to say remissions are possible… I wish I knew what caused my lengthy remission!!
(( hugs )) Mimi