Generic Name: Tegretol for Trigeminal Neuralgia (carbamazepine)
Tegretol for Trigeminal Neuralgia Reviews
"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."
"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, drowsiness, weight gain, constipation. I am going to have to reduce my dose. Not sure whether to notify my 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 the 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 the doctor. Wish me luck!"
"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!"
"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."
"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)."
"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."
"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 downside to the medicine so far has been some light-headedness, which I am hoping will diminish or go away completely."
"I was put on Tegretol 2 weeks ago, and boy oh boy, the build-up felt like forever, but now that it is at 800mg, I am feeling so much better. I believe I will be going up yet again this week by another 200mg and then again if need be, before the doctor tapers me down to 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 tiredness, stumbles, and slurs over where I had been. This medicine works, and works well! I pray it doesn't stop working for me, ever!"
"I have been on Tegretol for about 7 years, which has been good with manageable attacks in 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 and a half weeks and finally have some relief. I am now having double my dose of 800mg 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 okay, but it is just like when I was first diagnosed. Wind or air con are worst for me. This is an awful illness, and I do hope you will get the help that you need."
"The first time I took Tegretol, it worked immediately and the pain went away. The pain comes and goes every year, and most importantly, the pain was not bad for the 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, I still feel the shock once in a while. Definitely feels better with Tegretol. The side effects, for me, are sleepiness, weight gain, excitement with no reason."
"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."
"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 200 mg 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."
"Diagnosed a year ago. The Tegretol helps with the pain massively, reducing it to more of an ache. My GP has me on a step-up and step-down routine so I'm not in them long term. It's working for me at the moment."
"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."
"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."
"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."
"I started taking Tegretol 500 mg every night after dinner. The 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 the doctor for a reassessment. The pain is down almost 70% and has given me some relief and relaxed me a bit."
"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."
"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."
"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."
"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."
"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."
"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."
"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."
"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 your 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."
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