Carbamazepine for Trigeminal Neuralgia User Reviews (Page 2)

• 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."

• Rainy
• April 6, 2016

Tegretol (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 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."

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

Tegretol XR (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."

• Annie...
• June 20, 2016

Tegretol (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 and abnormal looking cells also. Enlarged spleen also occurred. Now being referred to haematology and had to be taken off Tegretol as they believe I am taking quite a severe reaction to it."

• Anonymous
• March 12, 2012

Tegretol XR (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 God send to me."

• az200
• Taken for 1 to 6 months
• February 3, 2015

Tegretol (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."

• Miona
• 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 100mg twice a day and after one week the pain subsided. I was very happy. Only side affect was a terrible drowsiness most of the day but better than the pain. However by week three (still on only 200mg per day) I started to feel very unwell. I felt like I was dying. I got 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."

• Sonya
• Taken for 10 years or more
• February 11, 2021

"About 2005 I got small shocks on my face and of course I ignored them had to go to work. Then was outside in the heat 2006 and I had a pain when my front tooth 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. Til one day when my parent called ttyt he neuro and he gave me carbamazepine 200mg. It took half an hour to stop the pain. Been taking carbamazepine now since 2008. I find I have not been able to live my life with out it. I'm taking now 800mg. Then I found out I have osteoporosis. Tried to switch medication because of it. It won't let me. I tried all types of medications. Broke four bones so far. But I have to live with it now."

• guido
• August 5, 2016

"Reading all your testimonies gives me hope. All though a few of you have had a bad experience or no relief at all. 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'n 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 sometime 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 lookin in the sky it seems to calm down."

• Sarah...
• November 10, 2017

Tegretol (carbamazepine) "I have been on tegretol for seven years now,I still have general pain with the occasional flair 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 6 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."

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

Tegretol (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, rather have a daily torn cartilage than this terrible pain. Ended up in hospital being given Morphine, Diazepam, and a Diclophenac Suppository, which is not the most enjoyable method of administration. Doctor has prescribed Tegretol. This has provided some relief, in as much 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 zombiefied, and as I am unemployed looking for work this does give me some apprehension how I am going to cope with pain, sedation, and interviews.I am a Brit"

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

Tegretol (carbamazepine) "Diagnosed with TN two weeks ago. Within 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 Dr's for an increase or just put it down to allowing the meds to do its thing. Can only wait and see."

• Monic...
• 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 mgX 3 a day. No strikes after 2 doses. I regret telling everyone how wonderful it was working. The last 2 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 going to stop working. I'll add another 100mg at bedtime if need be.I'm scared!"

• 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 work 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."

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

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

• Found...
• 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 (100mg three times a day) didn't even touch the pain. It was only after I kept insisting that it wasn't working, he turned me loose to trial and error, on my own with an upper limit of 1000mg per day."

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

"Diagnosed after an auto accident and air bags 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 200mg to 600mg and on occasion 800 to 900 on bad days. 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 400mg. 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"

• Beargo
• 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 everyday."

• Felicia
• January 25, 2018

Tegretol (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 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."

• Anonymous
• March 8, 2009

Tegretol XR (carbamazepine) "Although the side effects can be very difficult to deal with but 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."

• Latny
• March 20, 2015

Epitol (carbamazepine) "I've had Trigeminal Neuralgia for over 16 years and the only relief I've ever had was Carbamezapine. Until recently Walmart was trying to save me money giving me the equivalent, Epitol, which I was told I'd of the dance formulary. This can't be correct, because I can barely function due to being extremely sleepy with this drug. I had taken Carbamezapine for so long and it worked 11 on a scale of 1-10. Changing my medicine without my consent was not a cool thing to do and I earn others to make sure that they look into these things before taking different medicines. I'm not pleased with Epitol at all."

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

"I have been using tegretol (carbamzepine) since 2008. I have been DX with Multiple Sclerosis and Trigeminal neuralgia. I was put on Carbarzepine because of the MS. My first dose started working at 400mg. And worked after a half an hour. Now in 2016. Because of my building a intolerance to the medicine . I am at 1200 mg. I can not 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 me feeling sick. I take the 1200 mg by splitting it into 4 times 8am , 2pm , 7pm and 12am. Not all at once."

• VWano
• Taken for 5 to 10 years
• July 14, 2017

"I've had TN for about 6 or so years was put on 900mg a day and that worked for a few years n duh me slowly stared taking myself off n pain got worse so Dr upped the dose 1800mg a day that worked for quite awhile then later it started coming back so did a lot of research and come across people that did the cyberknife treatment and no referral and they got me in right away for first appt and did MRI and CT and they made a mask and two weeks later I had it done I'm just a few days out since treatment and they pain will get less n 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 n I can deal with that verses pain I'm hoping they find a cure"

• Facep...
• Taken for 5 to 10 years
• October 13, 2019

Epitol (carbamazepine) "When I was first diagnosed with trigeminal neuralgia I was in lots of pain. Pain medications did NOTHING. But Epitol worked but I was continually upped on the dose to keep it working. At the highest dose my Dr would give, 1200mg a day the pain still came back AGAIN. Finally a neurologist added 25mg of Amitriptyline and lowered the Epitol to 600mg a day. I've even lowered that over the past few years to just 400mg of Epitol a day and still only 25mg of Amitriptyline at night. I've also used Carbazamepine (the name brand) and Epitol (the generic) both work the same for me."

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

Tegretol (carbamazepine) "Been taking 3x day for several years. Suffered on and off for decades from head/facial pain with no diagnosis. Finally went to 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 break through pain I now gets 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."