Carbamazepine for Trigeminal Neuralgia User Reviews (Page 3)

• Tpm...
• Taken for 1 to 6 months
• May 26, 2016

"I've been taking Tegretol for over a month now, right after my TN diagnosis. It took a couple of days to fully work. Ever since then, the pain went completely away. Side effects for me are feeling sleepy and dizzy all the time."

• Fac...
• Taken for 5 to 10 years
• October 13, 2019

Carbamazepine "When I was first diagnosed with trigeminal neuralgia, I was in lots of pain. Pain medications did NOTHING. But Epitol worked, but I was continually upped on the dose to keep it working. At the highest dose my Dr. would give, 1200 mg a day, the pain still came back AGAIN. Finally, a neurologist added 25 mg of Amitriptyline and lowered the Epitol to 600 mg a day. I've even lowered that over the past few years to just 400 mg of Epitol a day and still only 25 mg of Amitriptyline at night. I've also used Carbamazepine (the name brand) and Epitol (the generic), both work the same for me."

• Lat...
• March 20, 2015

Carbamazepine "I've had Trigeminal Neuralgia for over 16 years, and the only relief I've ever had was Carbamazepine. Until recently, Walmart was trying to save me money by giving me the equivalent, Epitol, which I was told I'd have the same formulary. This can't be correct, because I can barely function due to being extremely sleepy with this drug. I had taken Carbamazepine for so long, and it worked 11 on a scale of 1-10. Changing my medicine without my consent was not a cool thing to do, and I urge others to make sure that they look into these things before taking different medicines. I'm not pleased with Epitol at all."

• deb...
• April 7, 2016

"Dear God, never experienced such pain like it (not even childbirth) - started with twitching to lower face 5 days ago and then bouts of explosive pain to left cheek, jaw, upper and lower teeth. Pain coming every half hour and lasting between 7-10 mins each - can't do anything other than wait for it to pass (and cry at times)! Started carbamazepine yesterday a.m. twice daily and pain lessened already, but feel very sleepy and a bit nauseous / 'loose' - still feel the underlying pain there, but so much better. Emergency dental appointment today with X-rays - no dental cause. Have had tinnitus in left ear for the past 8-9 months after a heavy cold plus some cervical disc bulging and nerve root impingement at C7. Anyone else been given a cause for this??"

• Cai...
• Taken for 10 years or more
• December 1, 2013

"Been taking for 10 years. Just had a bad 3 months, and it took 1600mg for 3 weeks to control it. Now back to 1200mg and am reducing 100mg every 2 weeks. I was down to 600mg prior to this. A very heavy cold set it off this time. For some strange reason, 1 x 400mg tablet is far more effective than 4 x 100mg tablets. I am in the UK, so no insurance and little cost."

• but...
• November 21, 2016

"I have TN2. It took 10 months, 5 doctors, dentist visits, and lastly, in the hospital with severe neck, face, and ear pain to get the correct diagnosis. Like most first visits to the dentist, he said nerve issue, but I went to a regular doctor first, was diagnosed with migraine, went to ENT, he said no problem, go back to dentist. Meanwhile, I am having pain 24/7, can only open my mouth about an inch, eating ice cream and gaining weight. Started on a very low dose of carbamazepine because I am very allergic. First few days, numbness improved, then on 200 mg a day, it is working, but jaw pain has not totally subsided. I don't have any side effects so far, thankfully. If all pain does not go away, I will have to up the dosage after I see the doctor. Prayers to you all."

• Rff...
• November 19, 2016

"TN came on gradually over a period of time, initially short attacks lasting only a few seconds prompted by face movement such as eating or talking. Went down the dentist route first and had 2 teeth removed until he told me I should see a doctor. I didn't go for some time, and attacks got worse, lasting longer and incapacitating in intensity. Diagnosed with TN and prescribed Tegretol. Taking 800mg a day and only odd 'breakthrough' pain on certain days depending on where the TN settles (sometimes in the muscle and jaw and sometimes on the skin surface). No side effects from Tegretol, but pain returns almost instantly should I miss my medication."

• haa...
• July 19, 2014

"My experience with trigeminal neuralgia is that it seems hugely influenced by emotional stress. Managing this and bringing presence of mind remain for me the most effective ways to deal with this crippling pain. Nevertheless, the carbamazepine seems helpful so far, though the side effects only seem to add to the symptoms of multiple sclerosis I've been diagnosed with for a dozen years."

• Anonymous
• Taken for 6 months to 1 year
• November 12, 2012

Carbamazepine "It took me 2 years to be diagnosed, and as soon as I began taking Tegretol, I began feeling less pain. I take 600 mg daily. I was taking 800 mg, but the nausea was too much. If I ever miss a pill, I will begin to have pain, but while taking it, I am almost 100%."

• No ...
• Taken for less than 1 month
• August 3, 2016

"Was prescribed the drug for trigeminal pain. Knowing people with trigeminal neuralgia and feeling my pain was nowhere as severe as some, I felt that it may be a bit overkill for my symptoms, maybe we were trying to castrate a mosquito with a machete? In the end, I couldn't stand how it made me feel. Put on 8 pounds in just 5 days. Blood pressure went up, and I was EXHAUSTED. I felt very edgy, lost confidence in my stride, and though the pain I was experiencing did dull, it began to expand to both temples, tingling in my lips and hands. Worst, I just didn't feel myself. I felt both drunk and somehow so fully aware of my strange symptoms. It was as though I was observing myself from a foot away. 200 mg twice daily for five days."

• Blo...
• May 16, 2017

"Was diagnosed in January with TN, although I thought that's what I had. My dad and his sister had TN as well. Started on a low dose of carbamazepine, 200 mg a day, and naively I thought this would make the pain disappear. No, it did not. They gradually increased the dose to 300 mg three times a day, and this worked for approximately 8 weeks. I thought I had found the dosage that would work for me, and I would be pain-free forever, but no, the pain returned last week, and it was excruciating, I could hardly eat anything. I increased my dose to 400 mg in the morning, 300 mg in the afternoon, and 400 mg at night, and gradually the pain has disappeared. Spoke to the doctor today, and I can increase the dosage to 1,600 mg if needed, and she will prescribe slow-acting carbamazepine as well."

• Lul...
• August 21, 2020

"I thought it was a toothache happening in my right upper jaw. My partner recommended that I see my doctor, who referred me to a neurosurgeon. He recommended surgery. I had the surgery, and the pain was gone for 5 years. Then, out of the blue, the pain hit me. My home doctor issued carbamazepine, but it took a while to take effect. They started to work, and I was pain-free for about a year. Suddenly, the pain returned. I increased the dosage, but it still hasn't helped. The pain happened when I went to wipe the nasal part of my nose on the right side. The shock went from there to my cheek and eye area. I was taking 2 pills in the morning, 1 pill at lunch hour, and 2 in the evening. Shocks happen in the morning, and now they are unpredictable. I saw the doctor, and he said to add one more at lunch time. I thought it may be from drinking coffee, as it has caffeine in it. So, I'm cutting out any caffeinated drinks and seeing if it's part of the problem. Praying for everyone who is suffering from this horrible pain."

• Red...
• September 29, 2016

"I got the TN problem 3 years ago. Initially, thought the problem was with my teeth and did a root canal. It was not necessary and was diagnosed with TN. Tegretol helped to reduce the pain to a manageable condition. I took 400 mg 3 times a day. But that much medicine every day made me feel so drowsy. So, I read about the chiropractic and started doing the adjustments and started doing brisk walking every day for 4 miles. With this for a year, the medication is reduced to half. Now I am taking only 200 mg 3 times! This is a good improvement in my case and want to continue the same until I stop taking any medication to reduce my pain completely. Hope this helps many who are going through this mega pain to reduce the medication."

• Chi...
• Taken for less than 1 month
• April 26, 2016

"I have only had two doses so far, 100 mg/2x a day. The pharmacist said it could take 5-7 days to feel the full effects as it has to build up and that I could still take Motrin or Vicodin (neither of which really put a dent in the pain) until it starts to work. So far, I've had probably 9 or 10 'episodes' of pain, and instead of what I can only compare to contractions (I've had 3 natural childbirths), the pain is now about a 6/10 vice 10/10. I am so happy about this. I developed TN 6 months ago and thought, like others, it was in my teeth or gums; I now know it was due to a sinus surgery... The pain has gone from mild, one episode a day to intense, excruciating, balled up on the couch crying every hour, bad. I hope this medicine works."

• Anonymous
• November 27, 2011

Carbamazepine "After being on regular Tegretol for about a year in combination with Neurontin, my neuro changed it to the Tegretol XR with fantastic results. I have been taking this for about 2 years now, and other than the annoying side effects and occasional breakthrough pain, I am very happy. Be warned, though, that the new generic of Tegretol XR may not be as effective as the name brand. When the generic came out, my insurance automatically switched me, and they didn't work near as well, and I was having a lot of breakthrough pain. My Dr. had to make a request to my insurance for the name brand, and thankfully they approved it."

• Jan...
• Taken for 1 to 6 months
• February 9, 2013

Carbamazepine "My problem started with severe uveitis/iritis (inflammation of the iris) for which I was under an eye specialist's care. This went on for almost 3 years before the doctor was able to get it under control. I lost a lot of vision in the left eye (it was in both eyes). Eventually, I became aware that I had tested positive for Lyme disease in 2005 but was never treated for it. I continued to have severe pain around the left eye that was incapacitating. I finally found a Lyme doctor after much pain, agony, and suffering. I was told I had trigeminal neuropathy in my left eye. I was given carbamazepine 100 mg x2 per day. I have only been taking it PRN, but after reading other people's experiences, I believe I need to take it every day to get the full effect. Thank you."

• Gle...
• September 29, 2020

"I am 71 years old and experienced severe face pain last week, so my first port of call was the dentist. I asked him to X-ray all my teeth and give me a check-up. The X-rays showed little difference from those taken 5 years ago, and a thorough examination of all my teeth showed no problems. That evening, I tried to eat scrambled eggs, and the pain was excruciating when I tried to bite down on the food. The next day, I managed to see my GP, explained all my symptoms, and was given a prescription for Tegretol 100 mg twice a day. I took 5 in all. The pain is gone, dizzy and confused, I nearly fell down the stairs. I started to feel sick, couldn't face food. I stopped taking them after 4 tablets and will wait to see if the pain comes back. I am not sure if these pills can be taken sporadically or over a period of time to work. I am scared of this medicine, as my mother-in-law, who also has TN, warned me that the medical profession has doubts about the safety of this drug."

• Al1...
• January 31, 2017

"Trigeminal neuralgia started about 6 months ago. Started the carbamazepine about 3 months ago and have been having the dosage steadily increased to 200 mg 3x/day with an additional 100 mg at night. Pain is easily triggered by the slightest touch to the right side of my face, and I can avoid that for the most part during the day, but nighttime is bad. The effectiveness of the additional 100 mg at night lasted 2 days, and pain is just as bad again. At 61 years of age, with multiple health issues and on disability because of COPD, not sure how much of this I'm going to be able to take."

• Sno...
• Taken for less than 1 month
• December 31, 2016

"I only started taking Carbamazepine 6 days ago after the Dr told me I 'possibly' have TN. My symptoms of extreme pain in my teeth/jaw on one side started a month ago only when I have something to eat/drink that isn't warm or if I breathe through my mouth. I am only on 100mg twice daily and have had only a minor side effect of a very slight feeling of 'spaced out' rarely, though. The meds seem to have reduced the severity and length of the pain already, but I'm hoping a trip to my chiropractor can help even more. I will let you know how that goes."

• Tin...
• February 13, 2013

"I started taking gabapentin for my trigeminal neuralgia nearly 3 years ago, but it gave me alarming mood swings. I nearly hit my wife! This sent me back to the doctor, and I was put on pregabalin, which was slightly better on the mood swings but became less effective over time. Now on Tegretol slow release (400 mg morning and 600 mg evening), it allows me to work but in some pain. I tried 600 mg twice a day, but I slept all day, every day for a month. Breakthrough pain can be helped by taking tramadol and co-codamol, although only slightly. Overall, good, but it will leave you sleepy and forgetful - don't forget its job is to slow the neurons in your brain (I believe it was originally developed for epilepsy). Don't expect to be completely pain-free, and good luck."

• Mar...
• January 29, 2012

Carbamazepine "After the first two years of trigeminal neuralgia without drugs, I finally gave in and began Tegretol XR at only 200 mg a day. It halved my pain and made 'life livable' again... dragging my feet on asking for an upped dosage since I fear it may lose its effectiveness."

• Anonymous
• September 20, 2009

Carbamazepine "I have trigeminal neuralgia and have been suffering from it for quite some time. I was put on 300 mg twice a day, and it didn't help at all, and the attacks were just getting more severe and frequent, so the neurologist upped it to 900 mg a day. Still no relief! I have been on two other kinds and pretty much have to rely on pain medication, which doesn't even relieve all the pain."

• Anonymous
• January 26, 2011

Carbamazepine "I have had TN for about 10 years, but was switched from Trileptal to carbamazepine, 100 mg 3x/day, about a month ago. The first week, I felt almost pain-free, but since, have been in constant pain. It does not seem to work for me at all now!"

• Que...
• September 22, 2019

"I was diagnosed 4 years ago with trigeminal neuralgia and was put on Tegretol 200 mg a day. For 2 years, I was fine, and then I was put up to 400 mg. 4 months ago, I had a massive flare-up, so I have seen the neurologist 3 times, been off work 4 months, taken 3 x 600 Tegretol under neurologist, and given pregabalin to run alongside 400. I’ve now got it under control. Back down to 900 mg Tegretol, off pregabalin as it did nothing for me. I am still having pain on top of my cheekbone and have been given nortriptyline for that. Tegretol does give me brain fog, but I would say I am 90 percent normal and as good as I’m going to get, I’ve been told. I have requested MVD op, but it's a long way off. Also, I have put in for PIP claim and have an assessor coming out. (Tegretol refers to carbamazepine)"

• Sla...
• Taken for less than 1 month
• January 10, 2022

Carbamazepine "Diagnosed 3 weeks ago. I have secondary progressive multiple sclerosis and have just learned that it's common for MS sufferers to get trigeminal neuralgia. I started on 50 mg Tegretol twice daily, which worked immediately and without any side effects, and it stopped the painful spasms. I was meant to increase to 100 mg twice daily on the third week, but I was confident that I would be okay at that dose. But on the 13th and 14th day, I started to get a few minor jolts, so I have upped the dose to 100 mg twice daily. The immediate side effect is that it works like a muscle relaxant, similar to baclofen or Lyrica. I find it difficult to walk or stand, but I can eat without any jolts, so time will tell! Take care, my friends!"