Carbamazepine for Trigeminal Neuralgia User Reviews (Page 4)

• ciara
• 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 3 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 ok."

• Shelby
• April 8, 2016

"I have been given tegretol to take for TN, then had decompression surgery. This relieved pain for 7yrs. A surgeon told me it need to saturate my system first and then begin script of 200mg 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 400x3 times each day and all is good."

• Poppy
• 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 as 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 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

Carbatrol (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?"

• Kaylin
• June 28, 2011

"8 years ago I had laser surgery for the nerve pain in my face and it worked great. About 3 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 200mg of Carbamazepine and it's working great. I hope it works for many years."

• Slats
• Taken for less than 1 month
• January 10, 2022

Tegretol (carbamazepine) "Diagnosed 3 weeks ago. I have secondary progressive multiple sclerosis and have just learned that it's common for MS sufferers to get Trigeminal Neuralgia. I started on 50mg Tegretol twice daily which worked immediately and without any side effects and it stopped the painful spasms. I was meant to increase to 100mg twice daily on the third week but I was confident that I would be ok at that dose but on the 13th and 14th day I started to get a few minor jolts so I have upped the dose to 100mg twice daily. The immediate side effect is that it works like a muscle relaxant similar to baclofen or lyrica. I find it difficult to walk or stand but I can eat without any jolts so time will tell! Take care my friends!"

• 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 tri gem 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 appt to discuss options."

• Tehreem
• 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 everyday, twice. In emergencies, the inject Toredole and that tamed the pain. But now it tames the pain in my temples only. The pain in my jaw and teeth at the right side ache a lot :( My doctor says, surgery i sthe only solution to the this sort of advance level pain and even if the pain comes back, it won't before TEN years. I doubt :("

• Endur...
• September 16, 2011

"I was prescribed this drug to alleviate the pain of Trigeminal Neuralgia. What a terrible experience. Only 4 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 Dr. 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."

• paulus
• 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 anti-depressants over the last few years where it seemed my doctor wasn't believing me. I've just started on Carbamazapine. 100mg twice a day, but after 4 days it wasn't really doing anything. Then the dose was changed to 400mg 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 medication, so I'm not worried about that. I just hope the effects continue to last."

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

"Hi, I'm hoping someone may have taken Tegritol 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 X-Ray and said "your teeth are perfect". I had X-Ray done of my neck due to prior experience w/ rupture. I knew it had to be a disc slip or rupture in my neck and a nerve was very irritated & for some reason hurting what by now was all my teeth on the right side & random stabbing in right ear. I was diagnosed w/ this Trigeminal Neuralgia. 200mg Tegrital 3x a day. Been on 5 days...no relief. Is this typical. I need this med to work!!"

• thats...
• 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 didn't work at all them 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, drowsiness, problem walking, now trying to lower dose to prevent side effects."

• Mdano
• February 27, 2019

"I started tegretol (carbamazapine) 48 hours ago 100mg 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 came more frequently. After 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 set 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?"

• 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. Only side effect is that it makes me drowsy."

• dmoa
• 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 canal all 4 I started to experience pain that you can not describe. Was put on carbamazepine 400mg a day which was helping. "

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

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

• Joan
• 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."

• gambo
• 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."

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

"I started on one tablet a day at beginning of July for 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 the last two weeks I have suffered from mood swings, disturbed sleeping, emotional, irrational, hyper activity. 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"

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

"I was in hospital for pneumonia when I was, thankfully, diagnosed with Trigeminal Neuralgia. I was given carbamazepine which I thought was a life saver. 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 is does not have anywhere the same effect. I am suffering so much at the moment it is excruciating to even swallow. Although I do not want anymore 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'"

• Teresa
• Taken for 5 to 10 years
• September 28, 2021

"I had TN for over 10 years and I also was on several medication, until I was introduced to Carbamazepine. My dosage is 300 mg two in morning and two at night. I’m the highest dosage that you can get, it help 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 morning and then resume taking the other one in mid afternoon and 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 myself 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 can not 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"

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

Tegretol (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 were it's just stopped working."

• Dids
• July 22, 2021

"Hi had the usual emergency visit to the dentist thinking I had an infection as teeth hurt. I quickly googled ( not advisable for this condition) and realised I may have this Trigeminal Neuralgia after 2 days of intense pain in jaw teeth and cheek GP said symptoms a bit a typical 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 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"

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

Tegretol (carbamazepine) "I have been on tegretol for 28 years! Started taking 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."

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

"My mother has suffered Trigeminal Neuralgia (TN) for over 50 years and has been using carbamazepine ever since her diagnosis. She is now in her late 80's 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 yrs 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"