Carbamazepine for Trigeminal Neuralgia User Reviews (Page 3)

• Tpmss
• 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. Every since then the pain went completely away. Side effects for me are feeling sleepy and dizzy all the time."

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

Tegretol XR (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 800mg 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%."

• Cairo...
• 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 x400mg tablet is far more effective than 4x100mg tablets. I am in UK so no insurance and little cost."

• Rffhu...
• November 19, 2016

"TN came on gradual 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 tegrotol. Taking 800mg a day and only odd "breakthrough" pain on certain days depending where the TN settles (sometimes in the muscle and jaw and sometimes on the skin surface). No side effects from tegrotol but pain returns almost instantly should I miss my medication."

• Jan4a...
• Taken for 1 to 6 months
• February 9, 2013

Tegretol (carbamazepine) "My problem started with severe uvetis/iritis (inflammation of the iris) for which I was under a eye specialist care. This went on for almost 3 yrs before the Dr was able to get it under control. I lost a lot of vision the 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 Dr. after much pain, agony, & suffering. I was told I had trigemial neuropathy in my left eye. I was given carbamazepine 100mg x2 per day. I have only been taking it prn but after reading other peoples experience I believe I need to take it every day to get the full effect . Thank Yo"

• butte...
• November 21, 2016

"I have TN2 it took 10 months 5 doctors ,dentist visit and lastly in hospital with severe neck ,face ,ear pain to get correct diagnosis.Like most first visit to the dentist,he said nerve issue,but I went to regular dr. 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 mouth about an inch ,eating ice cream & gaining weight.Started on a very low dose Carbamazepine because I am very allergic,first few days numbness improved ,then on 200mg 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 dr.Prayers to you all"

• haapb...
• 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."

• No th...
• 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 no where 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 on 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."

• debbi...
• 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 7-10mins each - cant do anything other than wait for it to pass (and cry at times)! Started carbamazepine yesterday am twice daily and pain lessened already but feel very sleepy and bit nauseous / "loose" - still feel the underlying pain there but so much better. Emergency dental appointment today with xrays - no dental cause. Have had tinnitus in left ear for past 8-9 months after heavy cold plus some cervical disc bulging and nerve root impingement at C7. Anyone else been given a cause for this??"

• Chigirl
• Taken for less than 1 month
• April 26, 2016

"I have only had two doses so far 100mg/2x a day. 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."

• Reddy...
• September 29, 2016

"I got the TN problem 3 years ago. Initially, thought the problem is with my teeth and did a root canal. It was not necessary and diagnosed with TN. Tegritol helped to reduce the pain to a manageble condition. I took 400 mg 3 times a day. But that much of medicine everyday made me feel so drowsy. So, I read about the chiropractice and started doing the adjustments and started doing brisk walking everyday for 4 miles. With this for an year, The medication is reduced to half. Now I am taking only 200 mg for 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 is going thru this mega pain to reduce the medication."

• Anonymous
• November 27, 2011

Tegretol XR (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."

• Lulul...
• August 21, 2020

"I thought it was a toothache happening in my right upper jaw. My partner recommended me to see my doctor we who referred me to a neursurgeon. 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 carbamizepine but it took awhile to to take effect. They started to work and I was pain free for about a year. Suddenly pain returned. I increased the dosage but it still hasn't helped. The pain happened when I went to wipe my nasal part of my nose on right side. The shock went from there to my cheek and eye area. I was taking 2 pills in the morning and 1 pill at lunch hour and 2 in the evening. Shocks happen in the morning and now they are unpredictable. I seen the doc and 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 see if its part of the problem.. Praying for everyone who is suffering from this horrible pain."

• Lindy
• Taken for less than 1 month
• April 24, 2013

Tegretol (carbamazepine) "I have been put on this medication for pain. After 6 mouth operations - I was left with terrible upper gum and palate pain. I have only been on it for 5 days - it is not working. The pain is severe and constant. I am praying - as I take it longer - it will take the pain away."

• Blob
• May 16, 2017

"Was diagnosed in January with TN, although I thought that's what I had. My dad & his sister had TN as well. Started on a low dose of carbamazepine, 200mg a day & naively I thought this would make the pain disappear. No it did not. They gradually increased dose to 300mg three times a day & this worked for approx 8 weeks. I thought I had found the dosage that would work for me & I would be pain free forever, but no the pain returned last week & it was excruciating, could hardly eat anything. I increased my dose to 400mg in the morning, 300mg in the afternoon & 400mg at night & gradually the pain has disappeared. Spoke to doctor today & I can increase dosage to 1600mg if needed & she will prescribe slow acting carbamazepine as well."

• Glen...
• 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 to those taken 5 years ago and a thorough examination of all my teeth showed no problems. That evening I tried to eat scrambled egg 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 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."

• Al1955
• 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 200mg 3x/day with an additional 100mg at night. Pain is easily triggered by the slightest touch to right side of my face and I can avoid that for the most part during the day but night time 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."

• Tinytoo
• 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 moods swings but became less effective over time. Now on Tegretol slow release (400mg morning and 600mg evening) it allows me to work but in some pain. I tried 600mg 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 it's job is to slow the neurons in you're brain (I believe it was originally developed for epilepsy). Don't expect to be completely pain free and good luck."

• Queenie
• September 22, 2019

"I was diagnosed 4 years ago with Trigeminal Neuralgia and was put on tegretol 200mg a day . For 2 years was fine and then put up to 400mg. 4 months ago I had a massive flair up , so have seen the neurologist 3 times , been off work 4 months , taken 3 x 600 tegretol under nuerologist, given pregablin to run along side 400 . I’ve now got under control . Back down to 900mg tegretol off pregablin as it did do nothing for me. I am still had pain on top of cheek bone and given nortriptyline for that . Tegretol does give me brain fog but I would say 90 per cent normal and as good as I’m going to get I’ve been told . I have requested mvd op but a long way off . Also I have put in for PIP claim and have assessor coming out .( tegretol ref to carbamazepine)"

• Anonymous
• September 20, 2009

Tegretol (carbamazepine) "I have trigeminal neuralgia and have been suffering from it for quite some time. I was put on 300 mgs 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 900mgs 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

Tegretol (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!"

• Snoozy
• Taken for less than 1 month
• December 31, 2016

"I only started talked Carbamazpine 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 breath 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."

• Mario...
• January 29, 2012

Tegretol XR (carbamazepine) "After first two years of trigeminal neuralgia without drugs I finally gave in and began Tegretol XR at only 200MG 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."

• snake...
• Taken for 10 years or more
• January 7, 2017

"I am a 6; 5'' 245 71 yr old retired teacher after 30 yrs since 2007. I played 2 yrs NFL n 2 1/2 yrs in ABA n am a night club bouncer wk as a bond recovery agent and security guard at troubled apt complexes. 3 tours in Vietnam I have been shot, stabbed been in neurmous fights n in last 45 yrs have had 11 surgeries ranging from 2 total hip replacements to eye knees nose ankle. Suffice it 2 say I have experienced ' pain .' Have TN for last 16 yrs. Unequivocally, this is the WORST pain I have ever experienced bar none. And as I get older ,as I am told by my Dr, it will only get worse.I was prescribed 300 mg 3x/day but since June of 2014 have been taking 150 mg 4x/daily.now taking 900 mg /day and I can't seem 2 balance the pain.Any insight ???"

• Tano
• Taken for 1 to 6 months
• November 10, 2020

Tegretol (carbamazepine) "Just out of hospital blew up like a balloon had very bad reaction. In hospital for 3 days was on tabs for 4 weeks so am off them now. No good for me as I was swelled up like a beach ball on them. A neurologist told me to go on them for 8 weeks gees after 4 weeks ended up in hospital taking 3 to 5 a day."