It is my understanding that Tegretol is the top oral medication in treating trigeminal neuralgia. However, my husband has had a limited positive response to it. Is there anyone else who has not seen success with Tegretol? If so, what was the next step in treatment?
Two other top ones here are Gabapentin and Lyrica
Sometimes you need a combo of 2 meds
Here is a link of our favorite meds to show the doctor!
Many have had good luck supplementing meds or instead of meds with .....Lidocaine Face Pain Patches = Prescription. (OR Lidocaine Cream)
You can just call the nurse and have them call that one in to pharmacy - no check up required!!
Then find out what med to try next.
If you haven't, get our "Bible" book - Striking Back - by Dr. Ken Casey
Lots of options in one little book!
My facial pain went away but landed in my temple, side of my head and ear. It was the deep, burning type of pain along with tingling sensations and I have decided I have type two. I am controlled by 200 mg of Tegretol taken at night. I am vibratory sensitive. Things like VERY loud music in church, handling the lawn mower, the vibration of the sewing machine etc caused my pain!!! So having figured out my triggers I have been good for a long time. Staying in tune with the body is so essential as is continuing to work with neurologist on combinations of meds.
You might try Oxcarbamezapine, it’s like the sister to tegretol. Also you might have him try cold laser therapy. It’s helped make a world of a difference for me!
I take 1200 mg of trileptal a day and 900 -1200 mg of gabapentin a day. I don't know how many mg he is up but maybe he needs to up the dose. When I I first diagnosed my doctor only put me on 75 mg so that wasn't enough. I had to see a pain doctor and he helped. I wish you both best of luck.
Tegretol also was of limited success for my daughter. Trileptal (oxcarbazepine) works best for her, though she is now at 1800mg and was having breakthrough pain so they added Gralise which is time release Gabapentin. I agree that it seems most use some “drug cocktail” combination…
I first tried Gabapentin but had some pretty bad side affects. Went to Carbamazepine and side affects still not great but it helps pain for a few weeks at which time I up the dose by 100mg a day. I’m only at 300mg twice daily and will add another 100mg soon. I wonder why my Neurologist didn’t start me out on Oxcarbamazepine, sounds like it works well. I’m now contemplating MVD or Gamma per Neurosurgeon. May go see anther Neurosergeon for second opinion on best results. Good luck, getting pain controlled is #1 priority.
I take tegretol xr 1200mg per day now. When I first started taking it, it worked instantly and I felt like a new person again. Since then, the medication stopped working and I am up to 1200mg. When the breakthrough pain was everyday again, the doc put me on baclofen as well as tegretol. Baclofen is an antispasmotic skeletal muscle relaxant. It has worked alot although I seem to still have some breakthrough pain. I am at 80mg of Baclofen daily which he says is max for me.
When the tegretol stopped working for me I had gotten so depressed bec the reality of living with TN had smacked me in the face. So I joined this website, learned so much in the meantime, and feel a little better knowing I am not alone. It seems like it is a seesaw effect of medication combinations and pain for some people. My doc said to "get over it" when he saw that I was depressed about the daily pain. He told me not to worry and that we would get rid of the pain. Easy for him to say, so I thought....If the baclofen doesnt work he said we will try Cymbalta. I dont know if that means on top of the two meds or deleting the baclofen or what. Everyone here keeps saying neurontin and trileptal so I wonder if that is the direction we will try next if the cymbalta doesnt work..... But maybe I will get lucky and the cymbalta will work . Hang in there.....
I had MVD July 2012 which helped with the stabbing, "electric" type of pain but left me with a constant ache. In April 2013 I had glycerol rhizotomy, after which I started experiencing stabs of pain like an ear ache, and stabs in the back of my throat, in addition to some of the TN-type stabbing pains coming back. As of right now, I am on 1200mg of gabapentin 3x a day; 120mg of Cymbalta at bedtime; 25mg of nortriptyline at bedtime; 20mg of oxycontin 2x a day; 10mg oxycodone 2x a day. You'd think with all this I'd get some sort of relief. I asked my pain doc to prescribe Tegretol but he said he doesn't get into that. My neurologist said to wait a month to see if I get any relief from the above cocktail. I am waiting to get into the Mayo Clinic to see Dr. Wharen, as I believe my pain may be a combo of TN and GPN. In the meantime, I would love to hear if anyone DOES have success with the Tegretol.
Not only did Tegretol not help, I ended up with side effects that pointed to me being allergic to it (which does not happen to everyone). I have since gone back to Keppra 1500 mg to 3000 mg per day. It does not get rid of the pain completely, but it does seem to take the edge off.
Keppra is also the one medication that has had little to no side effects for me. The most prevalent being lack of appetite which can lead to some weight loss. I have been on almost every anti seizure medication over the past 10 years and have kept notes on the side effects from my personal experiences.
I have also found the below website to be EXTREMELY helpful when researching new medications. This website lets you read ratings from actual people that have taken the medications and how it worked for them.
If you have issues finding the ratings, just let me know. Type in any medication and search. It will pull up the matches and under Satisfaction there will be a rating. Click on the "VIEW 118 Ratings" and it will take you to the page with all the patient ratings and comments. Below is a link for Keppra just as an example. BEST MED HELP SITE EVER :-)
It worked for my Type 1 initially, and the help diminished to unacceptable. Other drugs added - not much help. MVD worked for 1 year. Thinking I was doomed, now that the best drug and the best operation had failed me, my doc put me back on Tegretol, saying that people refractory to medicine often respond to it after a failed MDV - And I did. WooWhoo! Since then I've bounced up and down between 800 and 1500 mg a day, and there are breakthrough periods, and I've tried Gamma Knife, but the Tegretol is my life-line. It turns my terrible periods into bad periods, bad ones into tolerable ones, and when I'm in remission (7 months a year) - I attribute it to my maintenance dose.
I would love to hear if anyone DOES have success with the Tegretol.
it has been a journey finding the right combination- now for 1 year without pain.....I take carbatrol time released- cabamezapine time release is less costly, also gabapentin and baclofen- the best to you both... I understand the challenge... also we discovered that gluten was part of the issue- a holistic neurologist in Denver suggested this, and I now take 1/4 the meds I used to- as gluten was affecting the efficiency of the drugs in my body- as a aside- gluten really affects my joints - a recent binge over Christmas with cookies made my knees worthless...not worth it...
I loved the tegretol as it gets rid of my th and gives me amazing relief, the problem is though that I have the most severe side effects from it beside it knocking me out and making me loopy the 2nd day I take it I become almost paralyzed. I can't hardly walk or use my arms it's hard for me to swallow or talk. So as of right now I take zealot 8mg 3x a day, lyrics 75mg 2x a day I just recently started it) ativan 3x a day and percocet 10/325 up to 6x a day. I get some relief but not near the same as I get with tegretol....I guess us like this disease is complicated not one med works the same
Althogh it was the only medicine that reduced the pain, my body became extremely weak when taking it. I eventually had to hire someone to take care of me while on the med & witing for CMVD surgery.
I've been on Tegretol since I first went to the doctor with my problem in 2009. I take 400mg ER every 24 hours. I have had it lose its effectiveness, but I found that a drug holiday of 6 weeks is enough to make it start working again.
My TN is not as consistent as a lot of the stories on here and I do have periods of remission where I can go medicine free for a couple of months, which is a luxury not everyone has. I have tried other medications, but so far Tegretol is the only one that has worked. If I do get worse, I'm likely going the MVD route.
I have Type II and Tegratol has been a huge form of extra "assistance" for me. But I only take 50miligrams a day because, yes, it knocks you out. So for me my primary medication is 100miligrams of Nortriptyline/Pamelor, and 10mg of Zoloft. I find it hugely noticeably useful to take a drug that each is of a slightly different sector: anticonvulsant, tricyclic antidepressant, selective serotonin reuptake inhibitor (SSRI). For me the the Nortriptyline has the least side effects and doesn't make me very tired. Hope you're able to figure out a great combination for you. Good Luck!
my little "cocktail" is gabapentin 900mg day can up a dose if needed i choose bedtime one so any side drowsiness isn't an issue. i also take lortab twice daily can add one to bedtime if needed. i do have motor cortex implant done seven years ago because meds weren't controlling pain. so now with that in place the two meds, avoiding triggers getting enough rest etc i am at a pretty balanced place.
just do one day at a time and slowly you will find what works for you. as you can see it is not the same for everyone.
i started out on tegretol but developed panic attacks on it after six yrs...go figure. i did like that med the best but if you can't take it you can't take it. so now the neurotin or gabapetin is second choice.
blessings for pain free days for David and nice to see what a good care giver he has!!
Rick Bruce said:
I was diagnosed with Type 1 TN on the left side with terrible stabbing "electrical" shocks in late 2008. Tried quite a few drug combinations since then and now seem to be having decent results with Tegretol (100mg X3 and Gabapentin (300mgX3) with higher doses as needed.
I've been pretty much pain-free with only an occasional jab now and then for 4 months (longest stretch ever). It took over a year for the Tegretol to begin working this well.
I noticed no one in this thread mentioned Tegretol memory loss; whereas my short-term memory has been terrible....
Tegretol didn't work for me, just turned me into a zombie without reducing the pain at all. So now I'm on gabapentin and baclofen, which don't give me any nasty side effects and do take the edge off.
Tegretol didn't work for me either. I have to have Neurontin. The generic version didn't work.