Oxcarbazepine for Trigeminal Neuralgia User Reviews (Page 2)

• tri...
• May 12, 2013

"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."

• tha...
• Taken for less than 1 month
• January 22, 2021

"Was diagnosed 2 months ago with TN, started on Carbamazepine, which did help but also gave me terrible side effects. Switched to Oxcarbazepine a few weeks ago, started with 75 mg twice daily, which had no effect. Upped to 150 mg twice daily, which keeps the excruciating pain off, but at the same time still very painful. Now, the doctor is sending for other testing to rule out other possibilities. Hope the pain will end soon. Wish you all a healthy and easy future!"

• ttf...
• Taken for less than 1 month
• October 6, 2016

"I had an acoustic neuroma removed in August 2015. I have had terrible headaches and face pain for over a year. I switched neurologists, 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 a muscle cramp across the back of my head that lead to 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."

• Jam...
• Taken for 2 to 5 years
• May 4, 2021

"I have a phobia when it comes to meds, but suffering from trigeminal neuralgia made me get over it! I prayed and asked the Lord for some relief, and the doctor gave me this prescription. Tried this med at 300 mg, hardly any side effects, just a little drowsy, but as I continued taking it, I could handle it. Helps the pain a lot! One key takeaway to decrease side effects is to drink a lot of water after your dose!"

• 75g...
• July 18, 2016

"66 YO Caucasian, male. Developed MS @22-23, diagnosed @30. Developed trigeminal neuralgia in 3/2014 lasting 7 days. Started on Carbamazepine 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, and less mobile. Neurologist changed Rx: from Carbamazepine to Oxcarbazepine (300 mg, twice daily) 6 days ago. Deep facial lancinating pain has remitted, but still have burning, electric jolting pain in upper lip and cheek. Also taking Tramadol HCL (50 mg, once daily), which seems to help. Carbamazepine never worked. Oxcarbazepine/Tramadol combo seems effective."

• Ema...
• May 3, 2020

"87 yr old. I've had TN for about 5 years now, gone through multiple drugs (gabapentin, baclofen, Lyrica, and oxcarbazepine) and surgeries. As far as drugs go, I feel oxcarbazepine has helped the most. It took some time for my body to get over the nausea, but eventually became used to it. Just take nausea medication to help while your body gets used to it. The fatigue, dizziness, and lack of thought process is improving as I've slowly reduced the meds."

• Aut...
• April 7, 2018

"In September 2017, the TN came back full force, with pain lasting 1-2 minutes, then lingering afterward. Pain is along all my upper teeth on the right, and sometimes it'll tingle to my chin, nose, and temple. I went about 3 months without medication. Oxcarbazepine is the only medicine I've been on, and it works well, but I'm not pain-free. It took about 2-3 weeks to get good results on the medicine. I'm up to 1 pill (150 mg) 6x a day or every 4 hours. I have none of the listed side effects, but I cannot miss or be late on the medication. If I am, then it will take about 1 week for the medication to become effective again. I have had to increase my water intake, my appetite has changed some, and I've gained weight (but I'm also on birth control). I think eating more and drinking more water helps (old school). My neurologist said I may need to add salt to my diet to combat the sodium decrease I could experience. An MRI and blood test were conducted before the medication was prescribed."

• Fes...
• March 9, 2018

"This medication made my trigeminal neuralgia livable, controlling all the spontaneously triggered attacks I frequently had, with only symptoms remaining when I triggered them myself. Furthermore, this seems to be improving after one month of treatment!"

• Anonymous
• January 21, 2011

Oxcarbazepine "I developed TGN in 1997. This is not the typical TGN since it was caused by a stress ulcer about 3/4' from the left side of my mouth over the junction of three facial nerves. About a year after the ulcer healed, the facial pain abruptly developed big time. I was first prescribed Tegretol, but it made me feel like a dope. Trileptal was then prescribed, and I have cut it down to only 75 mg at night. I occasionally take 150 mg Trileptal 1 X when my facial pain really tunes up. I also rub in a little dab of Metrocream topically over that painful area that numbs my face just enough to minimize any pain."

• Tas...
• Taken for 2 to 5 years
• September 26, 2017

"I've had trigeminal neuralgia for 5 years. The 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 bolt 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 900 mg at 10 pm and 600 mg at 10 am. It doesn't take the pain away completely, but now it's tolerable, just a low-level zing instead of the lightning bolts."

• Lis...
• Taken for 2 to 5 years
• December 18, 2018

"I have been on oxcarbazepine for about 2 years. I am not diagnosed with anything in particular, although I have many symptoms of trigeminal neuralgia. I have tried several anti-seizure meds to control pain, this is the only one that I have had the best results from. Some days with pain are better than others still, but better with it than without it."

• Car...
• Taken for less than 1 month
• October 12, 2020

"58 yr old with MS. I've had symptoms of TN for a year, was diagnosed 3 months ago. First tried carbamazepine, which took away the pain but caused brain fog and increased weakness. Oxcarbazepine at 75 mg (slow release) a day took away pain with no side effects. Just two weeks in, its effectiveness is diminishing. Now I get pain while eating, touching my face, etc. Will up dosage as I'm at a super low level. This would have been a 10 review, but now I'm unsure if it will continue to work."

• Gar...
• Taken for 1 to 2 years
• December 16, 2020

"I am 65 and was diagnosed with TN (Trigeminal Neuralgia) in July 2019. Symptoms included intense needle pain/stabbing in my upper right lip, and it was painful to brush teeth, talk, eat, etc. I would even cry when eating sometimes, it was unbearable. I started on oxcarbazepine - 150 mg, 4 pills daily. I could feel relief after a few days. After 16 months on the medication, the pain has gradually returned, and the doctor has increased the dosage to 6 pills today. Hopefully, this will help. I am to take it for 5 days, and if it doesn't help, I will call the doctor back and possibly start on something else."

• goo...
• Taken for 6 months to 1 year
• December 6, 2020

"I took this oxcarbazepine years ago for TN (trigeminal neuralgia) and after about a year and a half, it calmed it down enough that I was able to go off the med. It was as if the nerve could stop inflaming and actually have a chance to heal some. I was off of it for 4 years with no problems and recently suspected that the TN might be creeping back, so I immediately got back on it. We're talking low doses, but this time it triggered my migraines with a vengeance. I was unable to tolerate the medication the second time."

• Jo ...
• June 15, 2016

"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 an appointment with a neurosurgeon again. TN has subsided some and have reduced my dose. Trileptal works, but sometimes I cannot 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."

• Dav...
• February 21, 2019

"I used carbamazepine for three separate TN attacks since 2015 with minimal side effects using a minimum dose. I have congestive heart failure and need to take torsemide, a water pill. While in remission and not taking carbamazepine, my cardiologist thought my ankles looked too swollen and changed the torsemide from 20 to 40 mg/day. Within 6 days, my TN started coming back. I researched and found that torsemide can lower the potassium to sodium ratio in your kidneys. This can make your nerves more sensitive. The cardiologist had me go back to 20 mg/day. I also started taking 4 over-the-counter potassium pills per day. Within 6 days, my TN had gone back into remission without taking carbamazepine. I now take 20 mg torsemide and one potassium pill per day and am still in remission. So you might try taking potassium supplements to see if it helps. By the way, the sodium to potassium ratio you get in a blood test is not necessarily the same ratio you have in your kidneys."

• Don...
• Taken for 1 to 6 months
• September 25, 2017

"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 lightning bolt types of pain, but now it's getting to last for five to 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."

• Anonymous
• October 5, 2011

Oxcarbazepine "Well, the pain on the nerve goes away pretty quickly after taking 150 mg of Trileptal, which I just started taking this year, because when I was told that I had trigeminal neuralgia last year, I didn't find out until the pain was almost over, but the medicine only lasts about 4 hours or so. At first, I got a headache, which didn't last too long, so I didn't take anything for the headache. What concerns me the most is that lately I have been getting pain on my ankles the next day after doing a 45-minute kickboxing workout, and it's not going away, which I never had before. Today, for the first time in my life, I had a terrible pain in my pelvis that I could hardly walk. Hopefully, the pain goes away soon, and I won't have to take anything until next year!"

• mar...
• September 23, 2017

"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 minutes in the morning, not every day, but it was better than continuous pain."

• Gep...
• August 10, 2019

"Have had TN for some 13 years and have been on carbamazepine (Tegretol) and slow release 160g for about 10 years. Recently started taking oxcarbazepine, as their similar drug makeup to 'carba' was like for like. It worked fine and cleared my head from the small fugue (a loss of awareness of one's identity) that 'carba' does. It went good for 3 weeks, then the slight pain, stomach, nausea, and balance symptoms started. The doctor thought it unrelated and gave me 3 types of medication to counteract the symptoms and increased my dosage from 900 to 1050mg twice a day. Then I started to have the worst 4 days of my life. It was like watching a junkie on TV with withdrawal symptoms, only it was me. My wife said enough is enough and went back to carbamazepine and just took the other medication for a few days following. Two days later, it was as if I’d just woken from a bad dream. Don’t get me wrong, but I still get pain, but it’s manageable."

• Pop...
• Taken for less than 1 month
• April 12, 2019

"I started on oxcarbazepine several days ago for trigeminal neuralgia. Almost immediately developed stomach pains, headache, dizziness, and weakness. I thought it would be worth it to get rid of the nerve pain. I woke last night and had a seizure followed by copious vomiting. I couldn't find any information online on how to reduce the side effects (though some people recommend Gatorade, which I will try.) My doctor switched me to carbamazepine today, but I am unable to eat and the carbamazepine must be taken with food. I am not sure what to do. I'm concerned about having more seizures. I do have epilepsy as well as the nerve compression, but this is the first time I have had a seizure in a long time. Confused and scared."

• TER...
• August 13, 2016

"20 years ago I was diagnosed with trigeminal neuralgia. I first went to an acupuncture doctor for about 7 years, too expensive to continue, found another doctor who was also an acupuncture doctor 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 emergency medicine doctor suggested I take carbamazepine. I moved from Arizona to Michigan, saw a neurologist who continued carbamazepine: 3 times a day, 8 hours apart - 1 1/2 at 8:30 A.M., 1 1/2 at 4:30 P.M., and 2 at 12:30 A.M. It appears this medicine has been working. Today Biogetica.com was given to me, and I'm wondering if and how you can help me. Thank you."

• Anonymous
• Taken for 6 months to 1 year
• December 6, 2022

"I've had trigeminal neuralgia since 2010. Took Tegretol (carbamazepine) for 12 years until the maximum dose of 1200 mg daily was no longer effective. I switched to oxcarbazepine. The changeover was rough. Coincidence: got COVID during the changeover. Now on the maximum dose of 2400 mg per day with some pain. The neurologist said to stay on 2400 mg per day and slowly add gabapentin. So now taking about 400 mg gabapentin daily. (Maximum dose gabapentin I believe is around 3600 mg). It seems to be working. My pain level is 0/10 most of the time, but I have to be diligent. The keto diet seems to help. Almost no sugar and lots of healthy fats. Wish I had started on oxcarbazepine, not carbamazepine (Tegretol)."

• Lyn...
• July 19, 2022

"Diagnosed with TN in early 2019. Started with 2 tabs of 150 mg of Oxcarbazepine twice daily (600 mg). Fast forward, I’m now at 900 mg and have added Baclofen. I am thinking about Gamma Knife surgery since pain breaks through off and on. I’m 67 and feel the Gamma Knife is less invasive than the MVD."

• Dai...
• Taken for less than 1 month
• July 31, 2016

"I am just in the weeding out what I don't have phase. Spent $3,000 in a root canal and new crown that I did not need. Expensive way to diagnose 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 amitriptyline, 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 happening. In 1998 I was DXed with a meningioma 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 backstory? Single, 63, Sara."