Carbamazepine for Trigeminal Neuralgia User Reviews

• Oldie
• Taken for less than 1 month
• April 5, 2020

"I'm 72 years old, living in New Zealand, which is in lockdown for Covid-19. I started with dreadful pain in my face 5 days ago. I managed to get an appointment with my doctor, who diagnosed trigeminal neuralgia immediately! She gave me 10mg Amitriptylene to take at night, & said she'd phone me the next day. I managed to get about three hours sleep, but still had the pain attacks. She rang, & decided to put me on carbamazepine, 200mg at night for a week, then increasing by 200mg in the morning, and increasing by one tablet daily, if needed. Wow! A wonderful night's sleep & a huge decrease in pain. I can still feel an attack starting, but the pain is getting duller by the day. This pain is the absolute worst I've ever experienced. I had pancreatitis 20 years ago & I thought that was horrendous, but this is so much worse. Fingers crossed, the attacks will start to decrease now. The only side-effect I have is being very drowsy, but I can cope with that."

• PJDW
• October 15, 2014

Tegretol (carbamazepine) "When I was first diagnosed, I thought I was dying. I take this (200 mg) - 3 times a day with another medicine. I have been pain free for 7 months. I stay drowsy and stagger at times but I can deal with that as long as the medicines continue to help me."

• Frust...
• Taken for 1 to 6 months
• June 12, 2019

"I take tegretol for Trigeminal Neuralgia in the V2 or maxillary nerve on the right side of my face. When I 1st started taking tegretol I thought it was a wonder drug I could again speak with my mouth open I could chew I could laugh and smile but the side effects have become more than I can deal with and the TN is back super sporadically and hanging on for longer than before per attack. It seems the game has changed. I now experience longer more painful bouts and my motor skills are severely compromised. I forget common words while speaking. I walk into door frames. I think I need to see a neurologist. I don't want to be a guinea pig to other medication or treatment."

• Littl...
• Taken for less than 1 month
• February 20, 2020

"After two dental crowns in which they had to cut my gums to get the crowns on, I started with constant pain. I kept going back to the dentist and he diagnosed me with TMD. I spent a fortune in physical therapy before seeing an oral surgeon who did a panoramic and found my disc looked good. After multiple visits to my family doctor, I was referred to a neurologist who diagnosed me with TN2. After two and a half years of constant pain, I was finally pain free taking carbamazepine. It took a week before it started working and then it lasted for five days and now the pain is back. I don't know if I can continue teaching which requires me to talk. I have taught for 22 years."

• Spacey
• Taken for 1 to 6 months
• May 18, 2019

Tegretol (carbamazepine) "I think Tegretol (Carbamazepine) is a wonder drug for trigeminal neuralgia (TN or TGN) pain. That being said, the side effects are horrible. I was doing well on it-- but suddenly, the spaciness has returned with memory loss, intense lassitude, drowiness, weight gain, constipation; I am going to have to reduce dose. Not sure whether to notify doctor(s) first, or not (as I plan to do it, anyway! as I simply cannot function.) I guess I will leave them a message with office staff; it's impossible to get a doctor to call back. I plan to reduce it by 100 mg slowly the same way I started which was to slowly increase the dose. However, I will only reduce it by 100 mg., until I can see doctor. Wish me luck!"

• revdr...
• Taken for less than 1 month
• June 25, 2017

"June 12, 2017 I was dx with Trigeminal Neuralgia (TN) after an emergency trip to my dentist thinking I had a tooth, gum or nerve issue on June 4th. Dentist put me on 500 mg antibiotic and I was taking 650 mg of Tylenol. Nothing! Terrible pain, I wanted to chop my head. The pain had me in tears crying out. My Dr. put me on prednisone and I was still taking 650 mg of Tylenol every 8 hours. Nothing. Then she put me on Carbamazepine, along with the other meds and I stopped the antibiotic. After 5 days I could breathe again with only a ache. People thought I was crazy when I told them having relief for an ache was a miracle. But it is, I live by the clock on my phone so I do not miss a dose, I live in fear that the pain will come back in full force."

• Monis...
• Taken for less than 1 month
• April 24, 2016

Tegretol (carbamazepine) "I've been on Tegretol for 4 days. It has taken me from excruciating pain to dull soreness. It's a wonder drug. I'm sleepy but almost pain free. I'm lucky that I was diagnosed after only six weeks. I'm praying it lasts!"

• Connie...
• March 27, 2013

Tegretol (carbamazepine) "I was initially put on Tegretol only to have it stop working after about 3 weeks. Dr. added Neurontin and eventually had surgery to remove the blood vessel and wrap the nerve. Best of luck to anyone with this terrible condition."

• tabeloe
• July 17, 2009

Tegretol (carbamazepine) "I started Tegretol a week ago for Trigeminal Neuralgia. I was having more and more episodes of TN, and was miserable. Since starting the medicine, I have only had one brief episode of pain. I have had terrible itching since I started taking it. I saw a different Doctor today about the itching, and he said the dose was too high. Hopefully the 100 mg twice a day will relieve the TN pain and not cause itching. I am happy to try the Tegretol, because TN pain is unbearable. Worse than any pain I've ever had (including labor, c-section pain, and oral surgery pain."

• ggran...
• May 14, 2011

Tegretol (carbamazepine) "I've been using CARBAMAZEPINE 200mg twice a day for about two years. It does a good job in limiting the amount of pain I have with Trigeminal Neuralgia. I found it best to take the medication regularly. If I skip days when I am not having problems the pain will be right back and it will take several days to get it back under control. I've tried GABAPENTIN 300mg and OXCARBAZEPINE 150mg but they did not help. The CARBAMAZEPINE makes me tired and sleepy but that is a lot better than the pain."

• Bill
• Taken for less than 1 month
• March 2, 2021

"I had severe nerve pain in my face on the right side that just came out of nowhere. All of a sudden it felt like an electrical wire from below my eye down to my upper lip was burning. The pain was excruciating. It lasted anywhere from 5 to 10 seconds at a time. It happened about 50 times a day. Sometimes I couldn’t even talk or open my mouth it hurt so bad. After two weeks I couldn’t take it anymore so I went to my primary care physician, and he prescribed 200 mg of Tegretol twice a day. I started by just taking one in the morning and that was all each day. After the second day the pain was totally gone. He didn’t give me any refills, so I’ll probably have to go to a neurologist and find out what I need to do."

• Anonymous
• August 27, 2009

Tegretol (carbamazepine) "I have been suffering from Trigeminal Neuralgia for almost 8 years thinking that I was having tooth problems. Since my symptoms would come and go, I never did any further research and accepted my dentist's explanation that it was just sensitive teeth. This time, I couldn't accept that and decided to research further. Thank goodness I did and thank goodness for Tegretol! After being on it for only 2 days I am experiencing almost total relief! TN was the most painful experience of my life. The only down side to the medicine so far has been some light-headedness, which I am hoping will diminish or go away completely."

• rjinp...
• May 31, 2011

Tegretol (carbamazepine) "I was put on Tegretol 2 weeks ago, and boy or boy the build up felt like forever but now that it is at 800mgs, I am feeling so much better. I believe I will be going up yet again this week another 200mg and then again if need be, before Doctor tapers me down where it is maintainable. I am still having just a bit of breakthrough pain a few times a day, which is nothing compared to where I was 2 weeks ago. I would gladly take the tired, stumbles and slurs over where I had been. This medicine works, and works well! I pray it doesn't stop working for me, ever!"

• Sara
• June 11, 2017

Carbatrol (carbamazepine) "I have been taking 200mgs of Carbatrol every day for 8 years, due to TN. My TN is the typical type, stabbing facial pain. I don't know what I would do without this medication. It allows me to live a normal life without any pain and I have no side effects. Sometimes my insurance asks me to use Tegretol because it's cheaper and has the same main ingredient, but I react horribly to it. I'm lucky to I have a doctor that is willing to advocate for me. Frankly though, I would pay out of pocket for the Carbatrol before I would use a generic. If you have TN and don't have a good reaction to Tegretol I would definitely recommend trying Carbatrol."

• Gracie...
• August 15, 2015

Tegretol (carbamazepine) "I have been on Tegretol for about 7 years which has been good with manageable attacks I between, it took 2 years before I was diagnosed in which time I had the fillings on the right side of my face replaced 3 times looking for the cause! I have now been in an attack for the last 3 an half weeks and at last have some relief , am now having double my dose 800mgs but still have a slight electric shock feeling and my top and bottom jaw ache slightly, I am getting a referral at a London hospital to check my teeth , just to make sure they are ok, but it is just like when I was first diagnosed. Wind or air con are worst for me. This is an awful illness, and do hope you to will get the help that you need,"

• Anonymous
• Taken for 2 to 5 years
• November 29, 2012

Epitol (carbamazepine) "This medicine brought almost instant relief for a very painful neurological condition caused by a root canal procedure that went bad. I suffered for two years before someone suggested this medicine. After 4 doses I was free of pain and continue to be. I understand I will be on this medicine for life."

• TN co...
• April 23, 2016

Tegretol (carbamazepine) "First time when I took Tegretol, it worked immediately and the pain went away. The pain comes and go every year and the most importantly the pain was not bad last 4 years that I did not even take Tegretol. This time the pain is unbearable so I'm on Tegretol. Even with the medication still feel the shock once in awhile. Definately feels better with Tegretol. The side effects, for me, sleepiness, weight gain, excitement with no reason."

• LFano
• Taken for 1 to 2 years
• August 5, 2019

Tegretol (carbamazepine) "After 5 long years of incorrect diagnosis, unnecessary dental and ear surgeries, I was finally diagnosed with Trigeminal Neuralgia (TN) about 12 months ago and put on 3 x 200mg of Tegretol daily. I have had horrific side effects with serious changes to my menstrual cycle (8 week non stop bleeding) but it is still better than living with the TN episodes that I would have almost daily. I have recently been having milder episodes and may have to try something else."

• AB 103
• December 8, 2009

Tegretol (carbamazepine) "I was having severe attacks several times a day and within two days on tegretol they stopped. I still get very minor twinges at times from trigger areas. It has been two weeks plus now and I can still recall beginning to brush my teeth and ending up on the floor, so I would be happy if I retain this level of control forever."

• soooo...
• Taken for 10 years or more
• June 3, 2019

Carbatrol (carbamazepine) "I’ve been using carbatrol for at least 15 to 20 years and have noticed my front teeth are getting loose . But after my second MVD I AM STILL 5yrs painfree. Except when my brother passed away in Feb 2019, started crying and had three massive face pains so I had to stop crying So that was due to strees. So I keep up to date on my blood test but just realized a side effect is loose teeth which is a VERY small price to pay for no pain"

• lockets
• March 5, 2017

Tegretol (carbamazepine) "Diagnosed a year ago. The tegratol helps with the pain massively, reducing it to more of and ache. My g.p has me on a step up and and step down routine so I'm not in them long term. It's working for me at the moment"

• Thebi...
• Taken for 5 to 10 years
• August 12, 2014

Tegretol (carbamazepine) "I have spent 17 years with atypical trigeminal neuralgia. This medicine gave me 4 years pain free. It took a long time to work, seems like almost a year, but worked great for a time. Guess now it's on to something else."

• Leftc...
• Taken for less than 1 month
• February 9, 2021

"The first time I felt TN pain on my right cheek I thought I had been hit by lightning. Second time I started looking for stray current. Carbamazepine ER (extended release) definitely seems to be helping reduce the frequency of the shocks unless I was coincidentally entering a remission. I was prescribed 2x/day. This gets me through the night, pain free, but not through the day. I split the dose into 3x/day which seems to work better, but still not enough: I end up slowing down, sitting down, and biding my time until the next dose. Getting through the day is going to take a higher dose or other strategies. Looking at facial pain and seizure/ epilepsy web sites has given me two tips to help medication effectiveness: 1) eat something to keep blood sugar from getting too low, and 2) choose foods that are low in glutamate such as pears, apples, corn, or rice."

• Trige...
• Taken for less than 1 month
• August 5, 2018

Tegretol (carbamazepine) "I've been living with unbearable pain for 3 years. My official diagnosis is trigeminal neuralgia, although I'm still not sure the diagnosis is correct. Like many others, I've had endless dental procedures to no avail. They tried to put me on Tegretol and other anticonvulsants, but I can't tolerate it. The pain went away like magic from the first pill but the side effects were unbearable. It's as if someone hands you a life jacket and then it blows up in your face. I get a horrific state of agitation that lasts for many hours. I have to move, hit, kick, to relieve this madness (akathisia). My question: can I have relief from pain with Tegretol if the pain is caused by something ELSE (such as a dental implant, in my case)? Or is the diagnosis of trigeminal neuralgia definitive if the pain goes away? Thank you."

• Gurin...
• August 26, 2016

Tegretol (carbamazepine) "I started taking Tegretol 500mg every night after dinner. Initial ten days were extremely tough....very sleepy and was sleeping over 12 hours a day. Slowly there was some improvement but still very lethargic, struggling to concentrate, do day to day activities. Going back to doc. for a reassessment. The pain is down almost 70% and has given me some relief and relaxed me a bit."