User Reviews for Oxcarbazepine to treat Trigeminal Neuralgia
Brand names: Trileptal, Oxtellar XR
Oxcarbazepine has an average rating of 8.0 out of 10 from a total of 51 reviews for the off-label treatment of Trigeminal Neuralgia. 76% of reviewers reported a positive experience, while 14% reported a negative experience.
Reviews for Oxcarbazepine
"This medicine was heaven sent! At first I wasn't sure I was going to be able to tolerate it but after a few weeks it got in my system and leveled out it was fine my pain from TN is completely gone I'm taking 600 mg at night. With no side effects:) With this medication and my father God! I'm doing good:) don't give up on this med give it time to work! Hope this helps :)"
"My girlfriend has been on oxcarbazepine for about 8 months and she has been hospitalized for low sodium three times before they figured out that oxcarbazepine was causing it. This is a very serious condition. I'm glad it works for some people but be careful. It worked for her except for the side effects, unfortunately."
"I have been on this drug for 7 years. It is the only medication that works for the intense pain. I am on a very strong dose. 1200 mg 3 x daily and even taking this dose I still have some break through pain (spring and fall). The only side effect I dont like is getting tired. However, I would rather that than the pain."
"I was diagnosed with TN in January. Started out on very low dose and frequency . Doctor gradually increased because it wasn't working . I was about to give up but finally am taking a total of 900 mg/day and it's working! I was about to schedule Gamma Knife Procedure before it kicked in. I do get very sleepy in the daytime and am tired, but probably tired from the pain that wore me out !!!! Hang in there if you are just starting on this med"
Are you taking this medicine?
Trileptal (oxcarbazepine) "Stopped the incapacitating seizures. Side effects are bothersome but not as awful as the seizures: Sugar-sweet taste of all food, fatigue, occasional nausea, memory issues, sight issues, balance problems."
"Diagnosed with Trigeminal Neuralgia in 2011 after 2 root canals and 2 crowns. A new dentist sent me to an oral surgeon who knew what it was right away. Saw a neurologist and he confirmed the diagnosis and prescribed oxcarbazepine. It took a number of weeks to ramp up the meds to the correct level due to nausea. Currently taking 900mg at night. Really makes me feel loopy and drowsy. I have been pain free for most of the past 6 years. I also play trumpet daily, which amazes my neurologist. However, I feel I am not as sharp as I used to be (just turned 60) and have memory problems to the point of literally not recalling details of recent things. (Long term memory is fine.) There are also times during the day that I feel very sleepy."
"Been diagnosed with Trigeminal Neuralgia (TN) since October 2108 and have tried 4 types of meds. I had really bad reactions with all of them and also didn't reduce the pain. Now I am taking 150mg Trileptal with 100 mg Gabapentin both of them in morning and bedtime. The pain has reduced to a manageable level like 3 out of 10. Am thankful for that and I hope it will continue like that!!! I started going back to work and also enjoy life with friends!!!"
"I was taking Tegretol for about 2 years and it suddenly stopped working. The pain was insane and uncontrollable. My neurologist prescribed Oxstellar XR, but it was too expensive so he gave me samples of Trileptal and it worked extremely well. He then prescribed oxcarbazepine which was less expensive, it is a life saver. I'm probably taking too great of a dose but it's out of paranoia of the pain. Looking to have the surgery in case the medicines stop working."
Trileptal (oxcarbazepine) "This medicine has been a LIFESAVER for me, because quite frankly, facial nerve pain can drive a person over the edge. It can be very good for those suffering from Trigeminal Neuralgia. I give this medicine a A . Thank You "
"This has helped me tremendously. No face pain at all having Trigeminal Disorder. The pain can make you crazy. No pain pills helped at all. Take 450 mg every night and go right to sleep. Slept in a chair for 6 weeks keeping my head up and not being able to lay down in my bed to sleep. Cried every night with pain. Feel a little drowsy, fatigued and weakness some days but I'd rather deal with that instead of the pain. It's been two months now and I feel so much better. Good luck to all."
Trileptal (oxcarbazepine) "I have been taking 1200mg daily for a number of years and there are times when I'm pain free and times when I'm not pain free. Interestingly enough the pain is usually worse in the morning, and if I ignore it as best I can, it subsides. But it often comes back later in the day and around bedtime."
"I have had trigeminal neuralgia for 14 years. The condition is debilitating. If you have the condition you know exactly what I mean. I take 1200mg 3 times a day. Which is a lot! I have side effects such as tiredness, blurred vision, forgetfulness, weight gain, trouble walking because of double vision etc... AND there is still break through pain. However, I would rather be tired and forgetful than have the lighting shock pain 24/7. I think it saved my life in a way."
"Diagnosed May 2015 - left side typical TGN. Didnt want to take Tegretol because of the side effects so tried Gabapentin with minimal effect even on 2700mg pd. After 7 months of daily agony I finally changed to Trileptal. Took two weeks to kick in properly but have been pain free for the last 6 weeks. Have come off the Gabapentin (hideous) and am now working up the courage to come off the trileptal to see if its gone into remission. The MRI I had has identified the offending blood vessels but I really want to avoid surgery if I can. Medication is expensive but I have had very few side effects - I'll take that over pain any day of the week!"
"Been in pain for three years with headaches and trigeminal neuraligia, and taking Tegretol with not much relief. Just switched to Oxcarbazepine, and it is like I am a new person. No pain. I'm thrilled. Hoping the relief lasts, unlike my experience with Tegretol where it worked in the beginning and then it had no effect at all. Thankful to my new doc for prescribing this for me!!!!!"
"I have phobia when it comes to meds but suffering with trigeminal neuralgia made me get over it! I prayed and asked the Lord for some relief & the Dr. gave me this prescription. Tried this med at 300mg hardly no side effects just a little drowsy but as I continued taking it I could handle it. Helps the pain a lot! One key to take away or decrease side effects is drink a lot of water after your dose!"
"I have been on this medicine for 5 days and it has absolutely turned my life around...literally. I was trying Tegretol and it worked for my Trigeminal/Occipital neuralgia but made me off balance, slur my words even on a low dose. The doctor gave me this based on those debilitating side effects and I have almost no side effects so far and almost no pain! So hoping it will continue to work like this!"
"Was diagnosed 2 months ago with TN, started on Carbamazepine which did help but also gave me terrible side effects, switched to Oxcarbazepine few weeks ago, started with 75 mg twice daily which had no effect, upped to 150mg twice daily which keeps the excruciating pain off but at the same time still very painful, now doctor sending for other testing to rule out other possibilities, hope pain will end soon, wish you all a healthy and easy future!"
Trileptal (oxcarbazepine) "I use it for Trigeminal neuralgia and it is working great! I was first prescribed Tegretol and it worked for about a year but then the pain started to return. Doc said the Tegretol was being metabolized at a faster rate and she switched me to Trileptal. It worked in about 8 hours! And, as others have noted, you do struggle for words and have a bit of short-term memory impairment, but the pain is gone! Also, so is your libido! Tegretol was like taking Viagra, increased libido! But, it's still a better life without the pain."
"Life changing and I would not quit taking this unless I was forced to. I tried the tegretol and it was too severe for me. I have been on oxcarbazepine for 6 weeks now and it has almost stifled my trigeminal neuralgia episodes to where I can function now. It does have its side effects and I am often confused for the first few hours of taking my medication which is 150 milligrams 2 times per day. I'm glad we are starting out on a low dose As I am down to 102 pounds. I am also taking 3200 milligrams of gabapentin. This combination has worked for me. My last episode of trigeminal neuralgia was in September 2015 and it lasted for 34 days. That was it for me. I'm so glad for this medication to be available to me. There is a trade off though."
"Female, over 70. Have had TN since 2007. Had MVD in 2013. Pain free for a little over 3 yrs. Episodes have returned big time. Back on Oxcarbazapene, but not totally effective. Prior to MVD, I tried upping the dosage from 300 twice a day to 300 three times per day which caused false gall bladder symptoms and depletion of sodium. I am having some blurred vision at times and nausea. If I don't take the medication on time, the shooting, screaming, electric pains hit me with full force. I still have pains throughout the day, but can deal with those. I live in fear that the bigger pains are going to hit me any minute. I think the Oxcarbazapene is effective with fewer side effects, from the information I've read."
"I have had Trigeminal neuralgia now for 4 years and have had great success with Oxtellar XR. If your insurance will pay for this drug you will be very wise to try it. At first it made It made me a little sleepy and dizzy after a while I was ok. It has kept me pain free. Great drug, I take 1200 MG."
"41 yr old female have TN associated with MS. Had the gamma procedure 3 years ago and it worked wonders. However it's back. As I sit here today tears pouring down my face because it hurt to cry. I'm on lyrica oxtellar and Percocet. Problem is it hurt me to swallow anything including these pills. Has anyone had that problem. I haven't eaten or had anything to drink for two days...assuming if it doesn't go subside soon I'll need to be hospitalize just to get hydrated. The pain is out of control. Like an electric drill on the side of my face. Please help"
"I, like all of you have had trigeminal neuralgia for years. Was on Tegretol for 2 years then quite unexpected break through of magnitude 11 on a scale of 1 to 10 pains every 4 mins, my doctor prescribed Lyrica, useless with side effects of a drunk, double vision etc. In France oxcarbazepine is not the medicine of choice, convinced doctor to prescribe oxcarbazepine, in half hour normal. "
"I used to suffer from facial nerve pain. I'm 34 and the Doctors don't know why. I've been checked for MS. Anyway wanted to say this medicine has improved my life 100 times over and quite frankly I cannot function without it. To all who suffer from facial nerve pain, PLEASE try this medicine. It's not a lifesaver for everybody, but it's worth a try to those having pain so bad, that words cannot express it. Take care my friends and try to maintain hope. "
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
Learn more about Trigeminal Neuralgia
More about oxcarbazepine
- Check interactions
- Pricing & coupons
- Reviews (344)
- Drug images
- Side effects
- Dosage information
- Patient tips
- During pregnancy
- Support group
- Drug class: dibenzazepine anticonvulsants
- En español
- Drug Information
- Oxcarbazepine Extended-Release Tablets
- Oxcarbazepine Tablets
- Oxcarbazepine Oral Suspension
Trileptal (oxcarbazepine) "I have MS and experienced a severe relapse and spent a week in the hospital with chronic face pain. After determining it was Trigeminal neuralgia, my neurologist and I spent several weeks trying numerous treatments. Trileptal was the only one that gave me not only immediate relief, but I haven't had any face pain for months now!"