Carbamazepine for Trigeminal Neuralgia User Reviews (Page 5)

• Its...
• Taken for 1 to 2 years
• July 3, 2022

"I was diagnosed about 18 months ago with trigeminal neuralgia. My pain was in my left lower jaw and teeth. I told my dentist about it, and he told me I can't find anything wrong with your teeth on that side. The pain worsened to the point where I was getting desperate. Then my wife googled jaw/teeth pain and found the term trigeminal neuralgia. I contacted a neurologist who put me on Gabapentin and carbamazepine. They worked after a week and a half or so. I weaned myself off of the carbamazepine over time with no bad episodes until COVID!!! When COVID hit, my teeth pain came back with a vengeance. I was put on carbamazepine again with a 6-day dose of steroids, which finally brought me relief. However, the carbamazepine made me very tipsy, and I was unable to drive or walk in a straight line. I stopped the carbamazepine gradually and now just take 300 mg Gabapentin twice daily with no pain and no headaches. So very thankful!!!!"

• Mda...
• February 27, 2019

"I started Tegretol (carbamazepine) 48 hours ago, 100 mg 2x daily. I have been experiencing a lightning bolt in the right side of my face, from upper lip to eye, randomly for about 1 and 1/2 years now. Over time, they became more frequent. After being diagnosed, I was so thankful that I had never received the continuous one… until today! I had an MRI with contrast today. I tried to breathe shallow through most of it. When they went to take me out, I could smell patchouli. This is one scent that has always brought on my gag reflex. I was already holding my breath, trying not to cough, as I am still sick and swallowing brings on the shock unless I lean my head down and hold still. I was trying to sit up, and the shock came on and did not let go for 3 minutes, and as I tried to breathe afterward, it came on again for another 2, with no letting go. Headache present since this AM, maybe Tegretol?"

• End...
• September 16, 2011

"I was prescribed this drug to alleviate the pain of trigeminal neuralgia. What a terrible experience. Only four days into it, and I became overly down on the world and virtually everything in it. I was so saddened by everything around me. I was unable to simply look at photos of my children that I had easily done in the many years prior to this week, without any sort of difficulty whatsoever. Not really sure why it affected me in this manner, so I went back to the doctor. He said that this medication is sometimes prescribed to help other people deal and cope with bipolar disorder, mania, and he mentioned a couple of other things too. I hope that this medication is more helpful to others that may try it for this purpose or the others too."

• Fre...
• Taken for 5 to 10 years
• September 28, 2021

"I have been on Tegretol for almost 8 years after my initial diagnosis with TN. Well, not exactly... first I was on gabapentin and gained 30 pounds in 3 months. I asked for something else and was given this absolute miracle. I also take Topamax, Vicodin, and Verapamil and went from being unable to speak or sleep to a normal life. I've been on 600 mg (200 3x a day) and was just increased by 100. I'm feeling hungry like a wolf for the first time on it. I would do anything to survive this, so it's not a criticism. It's just an observation. I still have flares when I am stressed and when there are big weather changes."

• fin...
• Taken for less than 1 month
• May 6, 2024

"I am so happy, I have been battling facial pain for three years after an upper molar removal. The doctors and dentists were totally at a loss, they had no idea what was wrong with me. I saw all the specialists, and I would have paid anything to not be in pain, it was debilitating. I can't even describe it, let alone becoming a recluse at home. Finally, an ENT endoscopy appointment, the doctor mentioned something nerve-related, and I got into a neurologist and voila! I am on carbamazepine and so far, so good, although I do have the itchy rash on my head and feel very drowsy. I will try and stay on a low dose 2x a day until I have severe attacks in the winter time."

• Han...
• Taken for 10 years or more
• March 23, 2022

"My neuro said that it would help because I have MS. So I had a bad episode of TN and started carbamazepine. Side effects, which I try to separate from MS, seem to be hard. Because I have, with MS, gait problems, constipation, dizziness, blurred vision, foggy mind, and drowsiness. The one side effect that does come extra with the medication is I have to watch my sodium level. The one thing that is bothersome is I tried changing to other medications, and well, it was not good. I started at 200 mg and now I am at 800 mg. I take it four times a day. And I don't know why I forget to take it at times. When I forget too many times, I have a reaction. The benefit of taking carbamazepine is I have had a lot of days with no pain."

• Gra...
• Taken for 1 to 6 months
• September 24, 2017

"I started on one tablet a day at the beginning of July for an acute attack of TGN, increasing to two a day for three weeks, then down to one, then alternate days, last one on 14th August 2017 as pain gone. Since then, I have had skin rashes, swollen eyes, which initially was diagnosed as 'prickly heat,' then in the last two weeks, I have suffered from mood swings, disturbed sleeping, emotional, irrational, hyperactivity. My brain never stops working, thought not always sensible, nor speech. I do loads of tasks, going from one to another and making more work for myself. Had bloods done and awaiting results. Whilst researching, came across this and wondered if this could be the cause. Has anyone else heard of it? Studies show it is people with epilepsy."

• Coa...
• Taken for 1 to 2 years
• June 10, 2022

"Generic carbamazepine 200 mg x 3 times per day helped me survive TN, stay employed, and rear my children for more than a year. I had to be careful not to miss or delay a dose. Because of side effects (daytime sleepiness, mental sluggishness), my meds were transitioned to generic oxcarbazepine x 2 times per day. I think the oxcarbazepine works for a longer period of time and is more forgiving of a delayed dose, but has similar side effects. If I had to go back to carbamazepine I would: great relief from TN pain."

• Fer...
• Taken for 1 to 2 years
• April 23, 2025

Carbamazepine "I have to face the pain every once in a while. However, after doctor's prescription on 400 mg twice a day, my pain is under control. Nowadays I take only 400 mg/day. If my left eye starts watering out of nothing, I know the pain is coming, and then I move up to 800 mg - 400 mg every 12 hours. Pain is under control. Thanks to Tegretol CR (carbamazepine)."

• Han...
• Taken for 10 years or more
• June 5, 2022

"When started, worked, then dosage needed to be increased because of more episodes. Start 400 mg, then 14 yrs later today at 1100 mg. And still in pain today. Side effects: ataxia. Going through a MS exacerbation, though now on prednisone taper."

• ANG...
• June 12, 2013

Carbamazepine "Stopped the pain of trigeminal neuralgia. Side effects like unsteadiness, fingers twitching, sore joints, seeing auras, reading difficulties, speaking difficulties."

• Kat...
• March 15, 2013

Carbamazepine "This is the only medication that has helped me! It's great!"

• hlt...
• March 14, 2015

Carbamazepine "Worked for a while okay. After 2 1/2 months, I developed a reaction to it called 'Stevens-Johnson Syndrome,' which is a potentially deadly skin rash."

• JJJ...
• April 7, 2016

Carbamazepine "Excruciating pain in ear since June. Been on Tegretol since. From 600 mg to 1200. Then surgery. Still having pain. Still on 900 mg."

• Anonymous
• July 11, 2010

Carbamazepine "Made me exhausted every day (wanted to sleep 24/7) and had changes to menstrual cycle."

• Lex...
• November 9, 2015

Carbamazepine "800 mg of Tegretol and still in pain."

• Anonymous
• July 4, 2009

Carbamazepine "I have constant pain in my neck, scalp, and left thumb. Tegretol helped but compromised my bone marrow. Be sure to have CBC blood work regularly."

• Anonymous
• August 16, 2010

Carbamazepine "This is working wonders for me. Started helping me a few days after taking it."

• Car...
• Taken for less than 1 month
• January 31, 2016

"Up to 800 mg seems to work about once every 2nd day, still in excruciating pain, and it seems the medical fraternity doesn't give a damn."

• Ann...
• Taken for less than 1 month
• November 13, 2016

"I have been diagnosed with TN and was put on epilepsy tabs. I have taken all now, but still got pain in my head. I'm getting really worried about it as I can't suffer any more. What to do next?"

• Jen...
• March 5, 2017

"Caused drowsiness but did depress some of the pain."

• Anonymous
• September 17, 2022

Carbamazepine "The amount seems to need to go up according to the pain. I am on 1000 mg a day, and sometimes the pain still pops in now and then."

• pai...
• February 1, 2012

Carbamazepine "Totally relieved trigeminal pain - pain was non-existent. However, I also turned up allergic, so treatment stopped."

• Deb...
• April 22, 2020

"My father took this drug, and it developed into Alzheimer’s, or so we thought. It turned out to be the meds he was on."

• Spr...
• Taken for 1 to 2 years
• December 15, 2021

"Just about eliminated my atypical trigeminal neuralgia pain. I am on 1200 mg/day. I felt slightly dizzy for a day or two when upping the dose, but otherwise feel fine."