My doctor wants me to start taking 100mg twice daily along with topamax. Has anyone been on ttegretol? Any side effects? I am so frustrated! I am so tired of drs looking at me and not believing the pain I am in. If only there was a test to show them the level of pain I am feeling!!!!
Hi Ginger,
Topomax was the first drug I took ( before getting a definitive TN diagnosis ) and I was up to 400 mgs. It did nothing for my pain, and I lost 10 lbs in a month. When I started Tegretol, my pain was almost gone in three days. Unfortunately, I was allergic to it. I was weaning off the Topomax while on the Tegretol, and I was VERY tired and a bit of a zombie. I am told these side effects diminish in time. One thing you should know is if you respond to the Tegretol that is almost a sure sign you have TN.
Best of luck!
Christine
I started with neurotic then Topamax lyrica cymbalta Elavil and the last one I am on is tegretol. I take 1200mg and baclofen with verapamil ....I am a zombie but your body does have to adjust to it and after a week or two your energy will pick up a little. The side effects are somewhat similar to Topamax. But like Christine's if you pain decreases with tegretol the dr link your pain to tn. I was unfortunate and was a guinea pig since the drs were inexperienced with tn
Hi Ginger,
I take Tegretol 1300 mg in 4 divided doses and find if I am late taking a dose pain worsens. It does take little time to get used to increased doses but I have found it worth it. The tiredness does get better as your body gets used to dose. I also take Cymbalta 60 mg, Naproxen twice a day and 70mg of Amitriptyline at night. I was started on the dose of Tegretol initially because if your pain responds to it that is one of the diagnostic tools to confirm you have TN. I also have oromorph for breakthrough but that does not help very much.
Hope this helps
Ann
Thank y'all so much for the info. I have really enjoyed this site and I thankful for everyone willing to share their experience. I am going to try the med and see what happens - I have got to get some relief!!!!! I know you all know what I am talking about.
Hi Ginger, I have had successful relief with Tegretol. I take 500 mg. I believe the low dosage is 400 mg but they work you up 100 mg at a time over several weeks. I also take a low dosage of Cymbalta 30 mg. The first couple days I felt a little sleepy. I have notice that I have a slight difficulty pulling words for things out of my mind. Like I said to my husband lets go to that fancy coffee place. I was trying to think of Starbucks. It can be a little frustrating but overall very tolerable. No other problems except some constipation for a few weeks. I do believe you get use to the drug over a couple of weeks. So don't rule it out if you feel dopy the first week. Good luck Ginger. I am so blessed to be pain free for the last 3 weeks. Tina
I am so looking forward to being pain free for 3 weeks - 3 days - 3 hours - 3 minutes - I will take anything!!! Thank you for sharing.
Hey ginger!! Tegretol works great for me-- even at the 200 mg/day dose. We caught my tn early after my first flare and so far so good--has been four months!! It worked after a week of taking it!! Just FYI I take generic tegretol called epitol and it is only forty cents at walmart with my (crappy) insurance plan... but the time released was over sixty bucks!!
I felt sort of drunk for the first few days-- nothing too bad--actually felt like laughing a lot...lol. And it really helped me sleep well at night! I think it gets hairy with the side effects when you get up around 800 or more mg/day...
hope you feel better soon!!! this does suck...
I look forward to laughing verses what I am going through right now. Thanks for the info.
Hi, I actually just got off Tegretol after having my MVD in August. It effected me the same way gabapentin did (drunk feeling, foggy). It also gave me tingly lips at first but then I felt fine.
I am taking Teg and find it helpful. I take the slow release which gives me better coverage. The side effects are very debilitating for me, I am a light weight with meds, and have been on LTD since last December. The pain coverage is decent though.
Hi Ginger,
I have been taking Tegretol (carbamazepine) for about a year and a half now. Before that I took it for shorter periods of time and then went into remission and was able to wean off. I've been diagnosed with a non-malignant epidermoid brain tumour which is causing my TN and will ultimately require neurosurgery, but I'm holding off as long as I can and will only have the surgery when the tumour gets bigger. I'm under the care of both a neurologist and a neurosurgeon. Question: have you had an MRI? When I was first diagnosed with TN my GP did not refer me to a neurologist. I finally insisted and the neurologist sent me for my first MRI. That's when the tumour showed up, so now we're doing a 'wait and watch'. I think it's important to have an MRI if you have TN, just to see if there is any physiological cause that could be addressed through surgery if you choose to go that route. In the meantime though, Tegretol has been my life saver. I've been on doses up to 600 mg/day but have now got it down to 400. So 200 mg/day is a fairly low dose. Many doctors like to have you go for regular bloodwork to check creatinine, billyrubin, sodium levels etc. while on Tegretol. It does tend to leave you feeling tired which can be associated with low sodium. On your dosage it may not be a problem. I've tried to attach a newspaper clipping you might find interesting. I spotted this while on vacation in Victoria B.C. Hope it works! When I tell people about the pain, I say, "Imagine a lighting bolt going through your face - that's what TN pain is like!" I hope you will soon be pain-free. Thinking of you, Jay Jay
245-TNarticle.pdf (138 KB)I have been taking Tegretol (carbamazepine) for about a year and a half now. Before that I took it for shorter periods of time and then went into remission and was able to wean off. I've been diagnosed with a non-malignant epidermoid brain tumour which is causing my TN and will ultimately require neurosurgery, but I'm holding off as long as I can and will only have the surgery when the tumour gets bigger. I'm under the care of both a neurologist and a neurosurgeon. Question: have you had an MRI? When I was first diagnosed with TN my GP did not refer me to a neurologist. I finally insisted and the neurologist sent me for my first MRI. That's when the tumour showed up, so now we're doing a 'wait and watch'. I think it's important to have an MRI if you have TN, just to see if there is any physiological cause that could be addressed through surgery if you choose to go that route. In the meantime though, Tegretol has been my life saver. I've been on doses up to 600 mg/day but have now got it down to 400. So 200 mg/day is a fairly low dose. Many doctors like to have you go for regular bloodwork to check creatinine, billyrubin, sodium levels etc. while on Tegretol. It does tend to leave you feeling tired which can be associated with low sodium. On your dosage it may not be a problem. I've tried to attach a newspaper clipping you might find interesting. I spotted this while on vacation in Victoria B.C. Hope it works! When I tell people about the pain, I say, "Imagine a lighting bolt going through your face - that's what TN pain is like!" I hope you will soon be pain-free. Thinking of you, Jay Jay
Sorry, Ginger, the file must have been too big to upload so it didn't work! Jay Jay
Tegretol made my pain crazy I cannot even sleep … It seem that every one has different responce to each drug
Hello Ginger. I just wanted to comment on your message about Tegretol.I have been taking 400 mg two times a day and it takes away the pain almost completely.The side effects I experience are mostly one,tiredness.I am able to function,although, if I wanted to, I could lay down a lot.But like I said, the carbamazepine(tegretol) takes away my pain from Tn.I have an appointment with a neurosurgeon next week to discuss Gamma knife surgery,as I would not like to stay on this medicine forever.Good luck, and I hope your medication does you some good......Dave W.
My neurologist prescribed 200 mg of tegretol 3 times a day. It works and I have had no side effects. Finding the right doctor is the most important and hardest thing to do.
Hi again,
Forgot to mention that I also take a generic form of Tegretol which I also referred to originally as carbamazepine, and mine is the chewable slow release version too. Also forgot to say that in blood work they check the carbamazepine blood serum levels and that over a prolonged period I am reducing my dosage because the blood serum levels have risen. Jay Jay.
Yes, I have found that Tegratol helps, especially when together with Lyrica.
Feel good ;-),
Maris
I’m on tegretol, lyrica and baclofen. I had the most relief earlier on with tegretol but eventually it lost its effectiveness and needed to be combined with the other 2. Everyone responds to medications differently. Keep in mind that tegretol takes some time to build up in your system, and it may take some time to get the full benefits. It took me 3 days. I sincerely hope that you find some relief and a physician that understands