Carbamazepine for Trigeminal Neuralgia User Reviews (Page 2)

• lau...
• August 22, 2009

Carbamazepine "I have been on Tegretol for only 2 weeks and it gave me much relief. Neurontin and Topamax did not work for me. Only side effect of Tegretol is sleepiness. I sleep very well at night. I was prescribed 200mg twice a day, but only take it once a day. Sometimes I take it twice a day if pain in the morning is constant."

• Rai...
• April 6, 2016

Carbamazepine "Diagnosed with TN (glad to learn about it and find out I'm not dying of a brain tumor or something) - the pain is horrific. I've been on the generic form of Tegretol (Carbamazepine) 100 mg 3x per day for 3 weeks. I still have episodes of pain a couple of times a day, but at least I can walk around, talk, and eat without the excruciating pain I had been experiencing. Only downside is I feel like a zombie - tired and 'out of it' - but like others have said - I'd take that any day over the near constant pain I was having."

• Ann...
• June 20, 2016

Carbamazepine "I started taking Tegretol for TN, and it did greatly improve my ability to function. Pain was much duller during episodes and had stopped being totally debilitating. 6-7 weeks after use, I began to be so lethargic I couldn't get out of bed and was relying so much more on my husband to see to our toddler son. It was very worrying. I then developed severely enlarged glands under my chin, lumps on my neck, and started to feel generally unwell. I then had a full blood count done, and it returned a very low white blood cell count and abnormal-looking cells also. Enlarged spleen also occurred. Now being referred to hematology and had to be taken off Tegretol as they believe I am having quite a severe reaction to it."

• mis...
• Taken for less than 1 month
• January 12, 2014

Carbamazepine "I have been on Tegretol XR for about 3 weeks now for trigeminal neuralgia. I take 100 mg 2x a day. It took like two days for it to work. I only start to have pain from the attacks when I'm due for my next dose. And it's not nearly as bad. The only problem is that I'm already on pregabalin for fibromyalgia, so the Tegretol added makes me totally out of it. I can't remember things, I'm double drowsy all day, I zone out, and I don't like that it has negative interactions with about 500 medications, including Tylenol, which I usually take for breakthrough pain because ibuprofen doesn't work on me. So overall, it helps, but I really hope I don't have to take this for a long period of time."

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

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."

• gui...
• August 5, 2016

"Reading all your testimonies gives me hope. Although a few of you have had a bad experience or no relief at all, the majority seems in favor. I was recently diagnosed with TN. Never heard of it, also never felt pain like this in my life. Wakes me up, only eat when I'm starving, haven't been to the gym in 3 weeks. I've only been on it for 3 days, and so far no change. I guess it takes some time to get into your system. 100 mg 2 times a day. Not tired or dopey at all. Seems like the people with the higher mg have those symptoms. Well, wish me luck. One thing I just recently discovered, if I'm looking down, I start to get that twitch in my lip. Then I lean my head way back as I was looking in the sky, it seems to calm down."

• Anonymous
• March 12, 2012

Carbamazepine "It worked OK but had a dramatic effect on my mental capacities. I was in the aircraft business and it got to the point where I felt I was becoming a danger to my customers and myself because of my inability to remember. The day I couldn't recall my favorite grandson's name was the day I quit taking it. I underwent a radiological procedure (gamma knife surgery) at UAMS in Little Rock that cured the problem. I only have a mild flare-up occasionally, but it's nothing to what I used to suffer and is usually short-lived. I would recommend this procedure to anyone. It's painless and effective and was a Godsend to me."

• az2...
• Taken for 1 to 6 months
• February 3, 2015

Carbamazepine "Worked great on the pain. But my AST levels went through the roof. I am now unable to take them. Awaiting MVD surgery that can't come soon enough. Please ensure your doctor gives you regular blood tests. Mine did not, hence my liver problems."

• Mio...
• Taken for 1 to 6 months
• January 24, 2019

"Was diagnosed with TN pretty swiftly after about three weeks of face pain, one week of which was worse than giving birth! Was put on 100 mg twice a day, and after one week, the pain subsided. I was very happy. Only side effect was a terrible drowsiness most of the day, but better than the pain. However, by week three (still on only 200 mg per day), I started to feel very unwell. I felt like I was dying. I got a terrible fever, and the drowsiness got so unbearable I could hardly walk. I got a mouth ulcer (never get them), then another. I could hardly eat, felt nauseous, dizzy, and very unwell. Finally, the doctor ordered a blood test, and he then called me up a couple of days later to tell me to stop taking the drug immediately because I had an allergic reaction, and it had affected my liver. Off it now and feeling more like my old self. Luckily, the TN has subsided, and hopefully, it won't come back for a long time. If it does, I won't be taking carbamazepine again."

• Sar...
• November 10, 2017

Carbamazepine "I have been on Tegretol for seven years now. I still have general pain with the occasional flare-up of unbearable pain that I had before taking this medication. I am also on a high dose of folic acid as I became very anemic, this caused tiredness. It was just by chance I was diagnosed with TN after being in extreme pain for over six months. Many doctors and tests, one specialist just said it could be this, let's try this drug, it may not work, but if it does, we are on the right track. To be honest with you, if she said I needed to cut off a limb to ease the pain at that point, I would have asked for the knife. I was miserable, the pain was unbearable, and so was I. I do feel it is not working as well after all these years, may be due for review."

• Wiy...
• Taken for less than 1 month
• March 29, 2017

Carbamazepine "Diagnosed with TN about a week ago. I tore a cartilage in my right knee, which I thought was painful. Well, nothing compares to TN, I’d rather have a daily torn cartilage than this terrible pain. Ended up in the hospital being given morphine, diazepam, and a diclofenac suppository, which is not the most enjoyable method of administration. The doctor has prescribed Tegretol. This has provided some relief, inasmuch as the frequency of the episodes has reduced, but not the severity, which has not been attenuated in any way. At least I can function better than last week. Though now I do feel a bit zombified, and as I am unemployed and looking for work, this does give me some apprehension about how I am going to cope with pain, sedation, and interviews. I am a Brit."

• Son...
• Taken for 10 years or more
• February 11, 2021

"About 2005, I got small shocks on my face, and of course, I ignored them and had to go to work. Then I was outside in the heat in 2006, and I had a pain when my front teeth hit together. Of course, I thought it was my teeth. My dentist said it's not my teeth. Go see a neurologist. So I saw my neuro, and he said it was either MS or trigeminal neuralgia. After tests, lucky me, it was both. He told me to start my MS meds and medication for the TN. I lived with the shocks that were building up in size till one day when my parent called the neuro, and he gave me carbamazepine 200 mg. It took half an hour to stop the pain. I've been taking carbamazepine now since 2008. I find I have not been able to live my life without it. I'm taking 800 mg now. Then I found out I have osteoporosis. I tried to switch medication because of it. It won't let me. I tried all types of medications. I broke four bones so far. But I have to live with it now."

• Jen...
• Taken for less than 1 month
• October 18, 2015

Carbamazepine "Diagnosed with TN two weeks ago. Within the first 24 hours of taking Tegretol, I felt amazing. No pain, clear head, etc. A week and a half after starting the medication, I had a horrific TN episode for twenty hours. The pain was so bad it woke me from sleeping. I'm not sure whether to go back to the doctor for an increase or just put it down to allowing the meds to do its thing. Can only wait and see."

• Anonymous
• June 19, 2011

"I went to several doctors and wasted 5 months and a lot of dollars before I was diagnosed with trigeminal neuralgia. I was originally diagnosed with TMJ disorder. My excruciating pain was right in the middle of my ear, and it was the worst stabbing, electric-like pain anyone could imagine. It would just paralyze you. No indications on when it would happen. I have been on carbamazepine for about two months, and it has worked fantastically. It did make me a bit sleepy and unsteady in the beginning, but that has waned, and now I really do not have any side effects. I do sleep better at night than I did before I took it. I take 2 chewable tablets, 100 mg, 2x a day, and that has taken care of the pain. I have not had any episodes since I started taking it."

• Mon...
• November 2, 2016

"My shocks lasted 1-2 seconds, 50 times a day. Level 4 to 10. I could handle that. A little over a week ago, I experienced the most painful shock/stab that was off the charts. It hit me on my right side, my lip, gum, nose, nasal passage, and spread out into my cheek. It kept striking me and got worse and worse. It left me the same way it came. It lasted about 5 minutes. I started taking the carbamazepine that afternoon, 100 mg X 3 a day. No strikes after 2 doses. I regret telling everyone how wonderful it was working. The last few days, I've had 1 small shock a day. I've started to feel pain in my nasal passage. I got a shock this evening about 7. I'm worried the meds are going to stop working. I'll add another 100 mg at bedtime if need be. I'm scared!"

• Bev...
• Taken for 6 months to 1 year
• June 20, 2016

Carbamazepine "Diagnosed with atypical TN after lower orthognathic surgery 20 months ago. Now on 1000 mg Gabapentin 3x a day plus prolonged-release Carbamazepine 400 mg at night. Did start 100 mg Carbamazepine in the morning, but had problems with vision and balance, so decided against it. Drugs working okay. Wish there was a solution to my problem :-( Now just been told by my doctor that my white blood count is down, possibly due to the Carbamazepine, so may have to come off it."

• Cro...
• Taken for 5 to 10 years
• May 3, 2018

Carbamazepine "Been taking 3x a day for several years. Suffered on and off for decades from head/facial pain with no diagnosis. Finally went to a good neurologist. Tried gabapentin. Didn't work at all. (Neither does Dilaudid.) This does make me groggy still, and I have nausea, brain drain, and more. I would take any side effect for relief from that horrific pain. I've had it so bad, I literally couldn't breathe in. The breakthrough pain I now get is mainly an ache in my ear and sometimes teeth. The side effects also may be from the 15 other meds I take for various problems."

• BDT...
• Taken for 1 to 6 months
• April 26, 2017

"Diagnosed after an auto accident and airbags smashed me in the face and broke my glasses. Pain of the trigeminal neuralgia was 3 to 5 minutes each time it hit and was, as everyone on here describes, indescribable. This drug worked, but I continually had to keep increasing the dose from 200 mg to 600 mg and, on occasion, 800 to 900 on bad days. I have found great success with this drug combined with an acupuncture regimen, this combo has stopped the continued progression/escalation of pain and has me living on about 600 mg daily, sometimes as low as 400 mg. The reduction has helped with drowsiness, and I am not quite as scared regarding the continual progression/elevation of pain and meds. Just hope it lasts, every bit of reprieve you can get counts for a lot. GOOD LUCK ALL."

• Anonymous
• March 8, 2009

Carbamazepine "Although the side effects can be very difficult to deal with, the pain of trigeminal neuralgia is far, far worse. This last attack that I had with the disorder put me to my knees begging to die, so I started my Tegretol once again, and now, 6 days into it, no pain at all. I am very nauseated and extremely dizzy, but I will take the side effects over the pain any day of the week."

• Bea...
• Taken for 5 to 10 years
• November 5, 2013

"I have had trigeminal neuralgia for 8 years. I have been taking carbamazepine on and off for this time. This medicine has been very good for me, as it takes 99% of the pain away, with 800 mg per day. My side effect is tiredness, but I guess that is the price I have to pay for no pain. My TN used to stop after the season changes, but now it hasn't stopped, so it's carbamazepine every day."

• VWa...
• Taken for 5 to 10 years
• July 14, 2017

"I've had TN for about 6 or so years, was put on 900 mg a day, and that worked for a few years. N duh me slowly started taking myself off, and pain got worse, so Dr. upped the dose to 1800 mg a day. That worked for quite a while, then later it started coming back. So I did a lot of research and came across people that did the CyberKnife treatment, and no referral, and they got me in right away for the first appointment and did MRI and CT. They made a mask, and two weeks later I had it done. I'm just a few days out since treatment and the pain will get less and less after a month or so, so I'm hopeful. The other comments said they have been pain-free after the nerve started to die with a slight numbness, and I can deal with that versus pain. I'm hoping they find a cure."

• 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."

• Fou...
• Taken for 6 months to 1 year
• May 21, 2012

"I have trigeminal neuralgia with debilitating shock pain running from my upper gum/lip line up across my face into my eye socket. Carbamazepine was prescribed. After increasing the dosage incrementally, 800 mg a day (500 in the a.m. and 300 in the p.m.), it controls most of my pain. I still have touch sensitivity issues, if I run my tongue over my lip too hard, it sets off shocks. One thing you need to note: you may have to play around with the dosage and time of day you take it to control your pain. The first suggestion by my neurologist (100 mg three times a day) didn't even touch the pain. It was only after I kept insisting that it wasn't working that he turned me loose to trial and error on my own, with an upper limit of 1000 mg per day."

• Fun...
• Taken for 5 to 10 years
• October 2, 2016

"I have been using Tegretol (carbamazepine) since 2008. I have been diagnosed with multiple sclerosis and trigeminal neuralgia. I was put on carbamazepine because of the MS. My first dose started working at 400 mg and worked after half an hour. Now in 2016, because of my building intolerance to the medicine, I am at 1200 mg. I cannot live without this medicine. I have TN on both sides of my face. As soon as the shocks calm down, I will slowly try to back off the medicine back to 900 mg, where I was a month ago. Moving back and forth between doses makes my balance off and makes me feel sick. I take the 1200 mg by splitting it into four times: 8 am, 2 pm, 7 pm, and 12 am, not all at once."

• Fel...
• January 25, 2018

Carbamazepine "While I've taken Tegretol in the past with no issues, this time is different. First time around, no side effects. This time - possibly due to other medication - I've had horrible side effects. Headaches every day, dizziness, nausea to the point of not even enjoying a glass of water. Lightheadedness, unsteady on my feet - going for a walk with my friend the other day, I MUST have looked like a drunk. TBH - this time around, I'd rather have the nerve pain."