hi there looking for some advice. I have been on gabapentin 400 mg 3 times a day with 100 mg used for “breakthrough pain” It is no longer working. Saw my neurologist’s assistant today. she prescribed 200 mg of Tegretol to be taken twice a day in conjunction with the Gabapentin. Has anyone else been put on this cocktail? Does it work? Have you experienced and side effects?
Wishing you all a pain free day!
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Hi Amanda7,
I take 300 mg Gabapentin 3 x daily, plus baclofen 5 mg 3 x daily. That is my current mix on drugs for TN. It is working good at this point. Had me walking sideways at first. Better now. Still get real tired after taking. Like have to sleep tired. 
All my best to you.
JoAngela. 
I found taking gabapentin 4x a day instead of 3 helped a lot. Since doing that, I rarely have flare-ups unless I forget a dose. I do also take Life Extension ComfortMax but upping the frequency of gabapentin seemed to have the biggest impact.
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My PCP has pushed my daily usage of gabapentin to 1800 mg. That seems to work somewhat well except every so often I have flareups and have to push up to 2100 or 2400 mg. However, thank goodness, I can get by taking 1200 mg and all is okay. PCP says take less if all is okay and take more if needed. I like the gabapentin because it does not mess around with equilibrium. I ride motorcycles and don’t want my meds screwing that up for me. I have taken a bunch of different cocktails and did not like the effects.
Thanks JoAngela. I am a little nervous adding another med. Day 1 had me a little wonky. But the pain is less. I hope the wonky ness goes away. But if not I would rather be wonky then in pain!
Willie, how often do you take the gabapentin? This new drug has me a bit wonky. Never felt this way with gabapentin by itself
I’ve been on Tegretol and Gabapentin.
I felt like absolute hell!!!
I have since had 2 Glycerol Rhizotomies.(think I spelled that incorrectly)
I am not on ANY meds for Trigeminal Neuralgia …please consider that option …
If I get the pain again I will definitely have a 3rd procedure.
Good luck!!!
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I’m on Lyrica but I don’t have trigeminal neuralgia I have persistent idiopathic facial pain I was also put on trikendi another anticonvulsive medicine my neurologist also put me on Norco Tegretol is mainly given to people who suffer from trigeminal neuralgia if you don’t have that Tegretol won’t help they classify what we have as suicide PAin by the way GABApentin is Lyrica but updated I’ve been suffering with this since I turned 50 n I’m 68 now n to beet need a multilevel cage fusion in my back were u diagnosed with th because there’s a operation that works wonders on it mine comes n goes n I’m also on in emgality once a month injection for stabbing pain in my head because I was eating 300 extra strength Excedrin to take those headaches away it’s hard to find an understanding neurologist that has compassion for people who suffer with pain because to tell you the truth the opioid is what helps the best I’m not afraid of addiction because it keeps me out of pain I moved from Margate Florida to Ocalla one neurologist wanted nothing to do with me because of the pain medication two of them never heard of what I had that’s how rare it’s nerve pain is and if they don’t know the exact nerve don’t let them touch your face God bless everyone who suffers with pain it’s a horrible way to live
I agree one hundred percent! Tegretol made me feel so tired. I had the same procedure done and I would do it again!! This procedure is definitely worth looking into!
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I have been on a similar regime for the last three years. When things break through I take the Tegretol 3X a day rather than two. When things get real bad I have marijuana that I can take. This Trigeminal curse varies a whole lot as you know.
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I was on ever increasing amounts of Gabapentin for years, at the end was taking 3200 mg a day and a little more for really bad days. My doc added Tegretol in at a low dose at first, 200 mg a day after about six years. the initial side effect of sleepiness wears off after a bit. But I finally tired of taking so much gabapentin and over six months I weaned myself off (and lost 20 lbs). My doc increased my tegretol to 200mg twice a day with extra dose if I really need it. I find that my pain is worse in the late afternoon and evening (not to say that I don’t have days that I wake up in pain if the weather is cold), so instead of taking my twice daily dose at say 9am/9pm, I would rather take it at1pm/9pm and not feel so tired during the day. This year in addition to the tegretol my doc gave me baclofen, which I try to take as little as possible, generally1/2 tablet every afternoon with the option of taking more on really bad days.
When I look back on my medication use over the 10 plus years I have had TN I can see that I was so consumed with pain the first five years, but as time went on I felt like the gabapentin really wasn’t doing much for me (except making me fat and tired) but I was afraid of not taking it. I’m glad I finally weaned off it as I have to say the pain isn’t any worse than when I was taking it at the end…I think I had just built up such a tolerance to it. My advice is to not be afraid to try other meds and to not be scared off by initial side effects, because they lessen over time.
By the way I had an MVD after year one with some degree of pain relief ( I had type one and two TN and the surgery helped with the type one pain but not with the type two pain (which is exactly what my surgeon predicted).
TN is a roller coaster and a learning curve.
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Yeah,TN is a roller coaster. I’ve been riding it since 2014 and it is quite manageable now. I have become used to being tired most days so I have had to cut down on a lot of yard work and I notice that I will fall asleep watching tv . But the pain is not to bad. I’m taking tegretol and gabapentin but my tn is now centered behind my right eye and neither pill seems to work on that pain. I am happy though but in my mind I’m fearful of the day when this awful disease comes back full force as they say it will. I don’t know if I will be strong enough to fight it. Good luck to all who suffer from this crazy disease. Maybe one day we’ll have a vaccine!
When I was originally diagnosed (15yrs ago) I took 200 mg twice daily. After a couple of months the side effects became “too much” I was then switched over to gabapentin. Started with low doses and built up slowly(as it takes time to get in to your system). Weaned off the Tegretol. It took 900 mg 3 times a day to control my pain. After several months of that I decided to do Gamma Knife because it was the easiest most non invasive solution. Worked for two years, but then the pain resurfaced. Back on the meds for two years. I was 75% concious during that time period. Finally MVD time. BIG mistake. No pain since the day of the surgery, BUT several complications ever since (: Tom
Hi can I ask what is the dosage of each drug you are taking and how often do yo take them? I am on 200 mg of tegretal twice a day and 600 mg of gabapentin 3 times a day. My pain has decreased but it is not gone
Hello I am on 609 mg of gabapentin 4x a day and. 200 mg of tegratal 2x a day