User Reviews for Oxcarbazepine
Also known as: Oxtellar XR, Trileptal
The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care. Learn more about Oxcarbazepine.
Reviews for Oxcarbazepine to treat Trigeminal Neuralgia
"I've had Trigeminal Neuralgia for 5 years. First Rx prescribed was Lyrica. I had a foggy brain and had major balance issues. Next was Oxcarbazepine. I seemed to build up a tolerance and then it just didn't seem to control the lightning bolts feelings in my face. In pain, couldn't talk, brush my teeth, kiss my spouse, wash my face, etc. , without intense pain. Next was Oxtellar XR. FINALLY found something that works. Had to play around with the dosing. I now take 900mg at 10pm and 600mg at 10am. It doesn't take the pain away completely, but now it's tolerable, just a low level zing, instead of the lightning bolts."
Taser (taken for 2 to 5 years) September 26, 2017
2 users found this comment helpful.
"Purchased the Trigeminal Neuralgia kit from Biogetica. Big waste of money. Did nothing for me. Side note; I've had this condition (extreme facial pain, left side) going on about three years now. At first mostly lighting bolt types of pain but now it's getting to last for five / ten seconds which will be unbearable pain. Triggering it can be something very minor. Touching any part of my head, light wind, eating etc. Making an appointment now to see a specialist."
Don T (taken for 1 to 6 months) September 25, 2017
1 users found this comment helpful.
"Had taken 150 mg twice a day, had a very difficult time swallowing while eating, literally had to cut my food into tiny pieces. This mellowed after 8 days, still always had to have a glass of liquid when eating. Went to 150 mg. twice a day. Taking it with Neurontin, it did relieve my pain for 30 min. in the morning, not every day, but it was better than continuous pain."
marmie2003 September 23, 2017
0 users found this comment helpful.
"Anyone have a lot of sneezing and itchy while on trileptal"
Anonymous (taken for less than 1 month) July 2, 2017
3 users found this comment helpful.
"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."
Anonymous (taken for 5 to 10 years) January 18, 2017
16 users found this comment helpful.
"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 :)"
Josiesue67 (taken for 1 to 6 months) October 26, 2016
33 users found this comment helpful.
"I had an Acoustic Neuroma removed in August 2015. I have had terrible headaches and face pain for over a year. I switched neurologist and he stated that I just didn't present symptoms of Occipital Neuralgia also of Trigeminal Neuralgia. I have been on Gabapentin and doxepin with very little relief of the zaps and shocks that lead to like a muscle cramp across the back of my head that lead to a migraine like headaches. I have taken this for a week and this has helped immensely. I have cut in half the headaches and other pains. So far I'm happy with this."
ttfaraway (taken for less than 1 month) October 6, 2016
14 users found this comment helpful.
"20 years ago I was diagnosed with trigeminal neralgia. I first went to acupuncture dr. For about 7 years, too expensive to continue, found another dr who was also an acupuncture dr and suggested I try vitamin "b". I did and was suggested I take multiple different vitamin b. I did and this seemed to work until all hell broke loose and I went to the emergency ward 2 times. The last time the e. M. Dr suggested I take carbamazepine. I moved from arizona to michigan, saw a neuralagist who continued carbamazepine: 3 times a day, 8 hours apart- 1 1/2 at 8:30 a,m, 1 1/2 at 4:3o p,m, and 2 at 12:30 a. M. It appears this medicine has been working. Today biogetica. Co. Was given to me and I'm wondering if and how you can help me. Thank you."
TERESA VAN August 13, 2016
8 users found this comment helpful.
"Hi Guys: I am just in the weeding out what I don't have phase. Spent $3,000 inn a root canal and new crown that I did not need. Expensive way to diagnosis what it is not/ I suspect it's trigeminal neuralgia. Had my shrink/ sub specialist neuralgia guess it was TN 10 days ago. Took 50 mg Amytripoline one pill at night for 3 days. Sick as a dog with stomach pain and dehydration. Quit. I see my ENT tomorrow. When the electrical pain presented above my upper teeth this morning, my chin started to twitch, both are still happeningIn 1998 I was DXed with a mengioma indenting my brain stem. Had 6 weeks of FSRT radiation, 58 gr. Been stable since. Worried sick the tumor is growing again. Anyone out there with a similar back story? Single, 63 Saras"
Dain Bramaged (taken for less than 1 month) July 31, 2016
5 users found this comment helpful.
"66 YO caucasian, male. Developed MS @22-23, diagnosed @30. Developed trigeminal neuralgia in 3/2014 lasting 7 days. Started on Carbamazepin 7/2014. TN returned 8/2015; constant ever since. Had microvascular decompression surgery on 6/3/2016. Pain ceased for 19 days after surgery then returned as severe as before. Surgery recovery was painful, left me weak, disoriented & less mobile. Neurologist changed Rx: from Carbamazepine to Oxcarbazepine (300 mg, twice daily) 6 days ago. Deep facial lancinating pain has remissed but still have burning, electric jolting pain in upper lip and cheek. Also taking Tramadol HCL (50mg, once daily) which seems to help. Carbamazepine never worked. Oxcarbazepine/Tramadol combo seems effective."
75gator July 18, 2016
15 users found this comment helpful.
"TN came back big time after five years. Doc prescribed 600 three times a day. Still intense zaps. I tried 600 every 4 hours. It stopped most of the zaps but made me very sick, so went to 600 every six hours. Not as sick but tics sparkle and zaps continued. No lightning bolts this episode, 12 on a scale of 10, Thank God and trileptal. I would be dead without it. Was at Mayo and have appointment with neuro surgeon again. TN has subsided some and have reduced my dose, trileptal works, but sometimes I can not handle the dose needed. May have balloon compression but it scares me. My TN is MS related. Started trileptal 15 plus years ago but not during remissions."
Jo S June 15, 2016
11 users found this comment helpful.
"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!"
jaal56 February 9, 2016
28 users found this comment helpful.
"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."
Melissa C. February 4, 2016
27 users found this comment helpful.
"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."
in pain. (taken for 10 years or more) January 7, 2016
28 users found this comment helpful.
"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!"
Jenny Knoxville (taken for less than 1 month) September 8, 2015
33 users found this comment helpful.
"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"
Tago April 7, 2015
30 users found this comment helpful.
"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."
76 Triumph July 26, 2014
54 users found this comment helpful.
"Found this opinion forum just after waking in the night with Trigeminal Neuralgia type 2 excruciating pain. Doc prescribed oxcarbazepine but hadn't taken it consistently because of the side effects. In the time it took to read everyone's comments here the medicine brought my pain way down."
cardsun July 14, 2014
26 users found this comment helpful.
"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. "
Aubin April 12, 2014
35 users found this comment helpful.
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!"
JessMess August 6, 2013
109 users found this comment helpful.
"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."
Glad and painfree (taken for less than 1 month) August 3, 2013
55 users found this comment helpful.
"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."
Thankful everyday (taken for 5 to 10 years) July 31, 2013
59 users found this comment helpful.
"I have had severe trigeminal neuralgia for one year, hospitalized 9 times in 9 months, the pain never left, I had it 24/7. I was taking up to one Tramacet every hour before I had microdecompression in February 2013. I have to say that all other treatments were not available to me as I had abhorrent loop trigeminal and the surgery was my last hope. The surgery was very difficult and was only 75% successful to date, whilst in surgery I actually had a major blood vessel that could not be decompressed. I have been on Trileptal since October 2012 and I have gained 50 lbs. I am hungry all of the time."
triggy sufferer May 12, 2013
34 users found this comment helpful.
Trileptal (oxcarbazepine): "I have had Trigeminal Neuralgia for 20 yrs. There has been only one Dr. that hit it on the nose. Trileptal great medicine."
orkie March 12, 2013
88 users found this comment helpful.
"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!!!!!"
Betty88 (taken for less than 1 month) March 9, 2013
50 users found this comment helpful.
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