Carbamazepine for Trigeminal Neuralgia User Reviews (Page 4)

• Lin...
• Taken for less than 1 month
• April 24, 2013

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 that as I take it longer, it will take the pain away."

• She...
• April 8, 2016

"I have been given Tegretol to take for TN, then had decompression surgery. This relieved pain for 7 years. A surgeon told me it needed to saturate my system first and then begin a script of 200 mg x 3 per day. This means I needed to take 2 tablets together. This takes the pain away. I ensured I lay low for a few hours as this made me sleep. I am now on 400 x 3 times each day and all is good."

• sna...
• 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 and 2 1/2 yrs in ABA and am a nightclub bouncer, working as a bond recovery agent and security guard at troubled apartment complexes. 3 tours in Vietnam. I have been shot, stabbed, been in numerous fights, and in the last 45 yrs have had 11 surgeries ranging from 2 total hip replacements to eye, knees, nose, and ankle. Suffice it to say I have experienced pain. Have TN for the 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 doctor, 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 to balance the pain. Any insight ???"

• cia...
• Taken for less than 1 month
• December 24, 2020

"This medication is awful. It is horrible. I felt like my life was slipping away on it. Gave me mood swings, I had sad thoughts, I was dizzy, nauseous, and tired. Carbamazepine is so toxic, please don’t take it. It even lowered my white blood count and I got really sick. I visited the ER three times. I was so lightheaded and so nauseous. I felt like I was going to pass out any second. If you're on carbamazepine, please go do blood work and make sure everything is okay."

• Tan...
• Taken for 1 to 6 months
• November 10, 2020

Carbamazepine "Just out of the hospital, blew up like a balloon, had a very bad reaction. In the 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 the hospital taking 3 to 5 a day."

• Kay...
• June 28, 2011

"Eight years ago, I had laser surgery for the nerve pain in my face, and it worked great. About three years ago, it started coming back off and on. It just recently got so bad I had to see a doctor. He put me on 200 mg of carbamazepine, and it's working great. I hope it works for many years."

• Joa...
• Taken for less than 1 month
• July 25, 2021

"I have had a terrible reaction to this drug. I have lost total control of my hands. My hands shake very badly, and things keep falling out of my hands. I have loss of my balance and coordination. I have dizziness and double vision. I also have drowsiness and am extremely sleepy. I can hardly type these words on the computer, as my hands and fingers are shaking so badly. I can barely write on paper because my hands shake so badly. I feel like I'm living in a 'zone.' It's just terrible. I would not recommend carbamazepine to anyone."

• pau...
• Taken for less than 1 month
• September 17, 2022

"I have suffered with TN for about five years and was almost unable to function. Every breath of wind, eating, cleaning teeth, any movement in my facial expression, and talking resulted in complete agony like a thousand volts and stabbing with a knife on the right side of my face. I've had lots of antidepressants over the last few years where it seemed my doctor wasn't believing me. I've just started on carbamazepine, 100 mg twice a day, but after four days it wasn't really doing anything. Then the dose was changed to 400 mg a day, and OMG this is a game changer. Save for a few twinges every now and then, I'm pain-free. It actually feels weird as I'm expecting pain, but it doesn't happen. I'm still getting used to it. I'm used to drowsiness from other medications, so I'm not worried about that. I just hope the effects continue to last."

• Pop...
• August 11, 2017

"I am taking time-released carbamazepine for vestibular paroxysmia. I was experiencing machine-gun type tinnitus accompanied by vertigo for about 15 seconds at 45-second intervals. I started on 100 mg twice a day; I felt improvement within 12 hours. After one week, my symptoms returned and my doctor increased the dose to three, then four times a day. It has greatly reduced the tinnitus and vertigo, though I still get it if I lean over or lie down on that side. I experienced severe drowsiness and occasional dizziness the first few days, and after 6 weeks, I am still sleeping about 2 hours more than usual. I have become extremely sensitive to the sun (must wear strong sunblock, hat, and polarized glasses whenever outdoors.)"

• Anonymous
• April 22, 2011

Carbamazepine "Like a previous commenter, I have been suffering from trigeminal neuralgia for years but thought I had dental issues. I even had a root canal that I didn't need. Then my pain moved into my face, and I've been miserable since. I found tremendous relief on Carbatrol, but developed a severe allergic reaction to it and had to be taken off it. Now I take Gabapentin, and today my doctor added Lyrica, and I can't seem to get any relief. Has anyone tried any of the surgical options to get rid of this horrible, painful disorder?"

• Red...
• Taken for 1 to 6 months
• April 30, 2020

"This drug - carbamazepine 100 mg chewable tabs by Torrent - caused dramatic swelling of my throat. My throat felt as though I had a bad cold. The swelling on either side of my throat was visible from the 'outside.' Eating was painful. I did not suspect the medication was causing my problem for several weeks (3). I have had trigeminal neuralgia in the past and used carbamazepine at that time (though not one made by Torrent). And I had suffered no such symptoms. I've called my physician for an appointment to discuss options."

• tha...
• Taken for less than 1 month
• December 16, 2020

"I came down with terrible shooting pain on my left side from the chin to my mouth to my ears, it was so unbearable that I literally cried from pain while running around with ice attached to the painful area. First, I started at urgent care with eye infection meds, then to ENT, to dentist, to neurologist who finally diagnosed me with TN (Trigeminal Neuralgia). I started on Carbamazepine with 100 mg twice a day, but it didn't work at all, then upped to 300 mg a day. After a few days, it did work well as pain disappeared - but the side effects still didn't stop. I'm extremely dizzy, weak, drowsy, have problems walking, and now trying to lower the dose to prevent side effects."

• Anonymous
• Taken for 10 years or more
• July 25, 2022

Carbamazepine "I have been on Tegretol for 28 years! Started taking it for trigeminal neuralgia, and it worked well. Increasing and decreasing doses as flare-ups from the pain came and went; added Lamictal and eventually Lyrica for nerve pain. Tegretol has been my magic drug; eventually had the MVD brain surgery for the trigeminal neuralgia, and I have lowered Tegretol to 300 a day: it calms me and keeps moods even. I don't want to go off. I am also on the 300 Lamictal, also used for trigeminal neuralgia and mood stabilizing; Tegretol has affected my white blood count and electrolytes (sodium) low counts, so had to have blood drawn every three months."

• Lov...
• Taken for less than 1 month
• March 12, 2016

"I'm hoping someone may have taken Tegretol and had a similar experience. Okay, so approx. 2 1/2 weeks ago, I rushed to the dentist because I thought my lower K-9 tooth (I guess that's what you'd call it) on the right side was rotting. I was hurting extremely bad. Woke me up all through the night. They did an X-ray and said, 'Your teeth are perfect.' I had an X-ray done of my neck due to prior experience with rupture. I knew it had to be a disc slip or rupture in my neck, and a nerve was very irritated and for some reason hurting what by now was all my teeth on the right side and random stabbing in my right ear. I was diagnosed with this Trigeminal Neuralgia. 200 mg Tegretol 3x a day. Been on 5 days...no relief. Is this typical? I need this med to work!!"

• gam...
• Taken for less than 1 month
• February 13, 2023

"I took one 300 mg dose in the morning, and things were fine. I took the second dose 12 hours later and had the worst headache of my life with no respite. The neuralgia pain was so bad I admitted myself to the hospital."

• Anonymous
• May 30, 2010

"The trigeminal neuralgia is very painful. My neurologist prescribed my medicine over the phone, and it relieved my pain within hours. I am very thankful for it. The only side effect is that it makes me drowsy."

• Bra...
• Taken for less than 1 month
• September 7, 2021

Carbamazepine "I've been living with TN for a month. I have MS as well (19+ years). ER visit put me on Tegretol 600 mg a day. Just want to go back to the same strength I had before Tegretol. Will have to wait and see. No pain of TN in the meantime. Will take the muscle weakness for now."

• Teh...
• Taken for less than 1 month
• February 10, 2017

"Tegretol (carbamazepine) and Caflam plus Toredole injections when my pain is out of control and I am screaming. I was diagnosed with Trigeminal Neuralgia (TGN) last week, and after that, two MRIs followed, showing a clear report apparently. Tegretol initially helped me for a day, and then the pain returned. I was put on Zegap, Phlogen, and Ansaid, but nothing controlled my pain. I was, and I am still taken to emergencies every day, twice. In emergencies, they inject Toredole, and that tamed the pain. But now it tames the pain in my temples only. The pain in my jaw and teeth on the right side aches a lot :( My doctor says surgery is the only solution to this sort of advanced level pain, and even if the pain comes back, it won't before TEN years. I doubt :("

• jwo...
• Taken for 10 years or more
• April 26, 2022

"My mother has suffered from Trigeminal Neuralgia (TN) for over 50 years and has been using carbamazepine ever since her diagnosis. She is now in her late 80s, and the drug no longer helps her, and the TN episodes have increased. After so many years of using carbamazepine, it depletes her sodium levels and creates so many side effects (air in her ears, dizziness, etc.). I recently started to research treatment options, and I was surprised to learn about Gamma Knife Surgery - it's a non-invasive procedure that will basically numb the TN and could last for years. I wish her doctors would have said something 39 years ago. She is scheduled to go to have the procedure in a few weeks, if successful, she will be able to stop taking meds and sodium tablets. For those who are younger and living with this pain, there is another procedure where they can operate and would end your pain and never need to take this drug. Don't wait until you're older, as it becomes more complicated based on age. Your TN will only get worse."

• dmo...
• January 31, 2012

"For about a year, I experienced a lot of my teeth needing root canals, so about 6 months ago, 4 teeth needed root canals the dentist couldn't understand. They looked further, the nerves were dying, so they root canaled all 4. I started to experience pain that you cannot describe. Was put on carbamazepine 400 mg a day, which was helping."

• Unb...
• Taken for 5 to 10 years
• September 22, 2021

"I was in the hospital for pneumonia when I was, thankfully, diagnosed with trigeminal neuralgia. I was given carbamazepine, which I thought was a lifesaver. And it has been for a few years, with episodes few and far between. Unfortunately, I think I have been taking it so long that it does not have anywhere near the same effect. I am suffering so much at the moment, it is excruciating to even swallow. Although I do not want any more surgery (been through cancer twice and luckily survived), I am beginning to think it is my only option. I can very much understand why it is called the 'suicide disease.'"

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

"I had TN for over 10 years and I also was on several medications until I was introduced to carbamazepine. My dosage is 300 mg, two in the morning and two at night. I’m on the highest dosage that you can get, it helps a lot, and I know the pain that comes with having this. Trust me, it’s not an easy road to never know when you’ll get a flare-up. What you have to do is take your medication faithfully. When I feel a flare-up, I take one of my pills early in the morning and then resume taking the other one in mid-afternoon. If you need more mg, like the 300 mg, ask your doctor, and they will prescribe a higher dosage. 200 mg was not high enough for me, do not be afraid to ask for more, because you all know how painful this can be, and no one should suffer. This changed my life. As for the teacher, please don’t feel that you cannot teach due to the pain, because with more carbamazepine, it will help to ease the pain and help you be able to talk to your students."

• Did...
• July 22, 2021

"Had the usual emergency visit to the dentist, thinking I had an infection as my teeth hurt. I quickly googled (not advisable for this condition) and realized I may have this Trigeminal Neuralgia after 2 days of intense pain in my jaw, teeth, and cheek. The GP said the symptoms are a bit atypical but couldn’t see what else it could be. I started on this drug, 2x 100 per day, and so far, so good. My jaw aches a bit at night, and my throat feels odd, but no pain. I’m a singer, so wondering how I return to singing in September, but all I care about for now is no pain."

• Jos...
• Taken for less than 1 month
• November 21, 2023

"I’m a 56-year-old woman that was diagnosed with TN about 20 years ago. I was on oxcarbazepine for the last 4 years. Here lately, it just stopped being effective. So my primary care doctor put me on 200 mg of carbamazepine for the pain. I’ve been on it for only 3 days, and I had no pain today! I was so happy and well-pleased with this medication! I pray it continues working for several years! I give this medication a 10 out of 10.. ❤️❤️"

• jan...
• Taken for 5 to 10 years
• September 7, 2022

Carbamazepine "I have been on Tegretol for 6 years. And it has been great, no pain. Also, amitriptyline at night to help me sleep. But after this time, it's just stopped working and I can't eat, drink, or sleep without pain. Has anyone else had this problem with Tegretol where it's just stopped working."