Tegretol for Trigeminal Neuralgia User Reviews (Page 2)
Tegretol has an average rating of 7.1 out of 10 from a total of 39 reviews for the treatment of Trigeminal Neuralgia. 59% of reviewers reported a positive experience, while 15% reported a negative experience.
Reviews for Tegretol
- Jan4a...
- Taken for 1 to 6 months
- February 9, 2013
"My problem started with severe uvetis/iritis (inflammation of the iris) for which I was under a eye specialist care. This went on for almost 3 yrs before the Dr was able to get it under control. I lost a lot of vision the the left eye (it was in both eyes). Eventually I became aware that I had tested positive for Lyme disease in 2005 but was never treated for it. I continued to have severe pain around the left eye that was incapacitating. I finally found a Lyme Dr. after much pain, agony, & suffering. I was told I had trigemial neuropathy in my left eye. I was given carbamazepine 100mg x2 per day. I have only been taking it prn but after reading other peoples experience I believe I need to take it every day to get the full effect . Thank Yo"
- Lindy
- Taken for less than 1 month
- April 24, 2013
"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 - as I take it longer - it will take the pain away."
Frequently asked questions
- Anonymous
- September 20, 2009
"I have trigeminal neuralgia and have been suffering from it for quite some time. I was put on 300 mgs twice a day and it didn't help at all and the attacks were just getting more severe and frequent, so the neurologist upped it to 900mgs a day. Still no relief! I have been on two other kinds and pretty much have to rely on pain medication which doesn't even relieve all the pain."
- Anonymous
- January 26, 2011
"I have had TN for about 10 years, but was switched from Trileptal to carbamazepine, 100 mg 3x/day, about a month ago. The first week I felt almost pain-free, but since have been in constant pain. It does not seem to work for me at all now!"
Are you taking this medicine?
- Tano
- Taken for 1 to 6 months
- November 10, 2020
"Just out of hospital blew up like a balloon had very bad reaction. In 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 hospital taking 3 to 5 a day."
- Slats
- Taken for less than 1 month
- January 10, 2022
"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!"
- Brand...
- Taken for less than 1 month
- September 7, 2021
"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."
- jan
- Taken for 5 to 10 years
- September 7, 2022
"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."
- Anonymous
- Taken for 10 years or more
- July 25, 2022
"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."
- ANGEL...
- June 12, 2013
"Stoped the pain of trigeminal neuralgia. Side effects like unsteadyness, fingers twitching, sore joints, seeing aura's, reading difficulties, speaking difficulties."
- Katie...
- March 15, 2013
"This is the only medication that has helped me! It's great!"
- hlt
- March 14, 2015
"Worked for awhile okay. After 2 1/2 months I developed a reaction to it called "Stevens-Johnson Syndrome" which is a potentially deadly skin rash."
- JJJOO
- April 7, 2016
"Excruciating pain in ear since June .Been on tegretol since. From 600mg to 1200 Then surgery. Still having pain. Still on 900mg"
- Anonymous
- July 11, 2010
"Made me exhausted everyday (wanted to sleep 24-7) and had changes to menstrual cycle."
- Lexy
- November 9, 2015
"800 mg of tegretol and still in pain"
- Anonymous
- September 17, 2022
"The amount seems to need to go up according to the pain. I am on 1000g a day and sometimes the pain still pops in now & then"
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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"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."