Tegretol for Trigeminal Neuralgia User Reviews (Page 2)

Tegretol has an average rating of 7.1 out of 10 from a total of 40 reviews for the treatment of Trigeminal Neuralgia. 60% of reviewers reported a positive experience, while 15% reported a negative experience.

Reviews for Tegretol

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

"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."

10 / 10

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27 Report

Fel...
January 25, 2018

"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."

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28 Report

Jan...
Taken for 1 to 6 months
February 9, 2013

"My problem started with severe uveitis/iritis (inflammation of the iris) for which I was under an eye specialist's care. This went on for almost 3 years before the doctor was able to get it under control. I lost a lot of vision in 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 doctor after much pain, agony, and suffering. I was told I had trigeminal neuropathy in my left eye. I was given carbamazepine 100 mg x2 per day. I have only been taking it PRN, but after reading other people's experiences, I believe I need to take it every day to get the full effect. Thank you."

6 / 10

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37 Report

Frequently asked questions

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Lin...
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 that as I take it longer, it will take the pain away."

2 / 10

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33 Report

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!"

1 / 10

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33 Report

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Anonymous
September 20, 2009

"I have trigeminal neuralgia and have been suffering from it for quite some time. I was put on 300 mg 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 900 mg 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."

3 / 10

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35 Report

Tan...
Taken for 1 to 6 months
November 10, 2020

"Just out of the hospital, blew up like a balloon, had a very bad reaction. In the 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 the hospital taking 3 to 5 a day."

1 / 10

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10 Report

Sla...
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 50 mg Tegretol twice daily, which worked immediately and without any side effects, and it stopped the painful spasms. I was meant to increase to 100 mg twice daily on the third week, but I was confident that I would be okay 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 100 mg 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!"

9 / 10

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7 Report

Anonymous
Taken for 10 years or more
July 25, 2022

"I have been on Tegretol for 28 years! Started taking it 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."

10 / 10

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4 Report

Bra...
Taken for less than 1 month
September 7, 2021

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

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4 Report

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 where it's just stopped working."

10 / 10

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3 Report

ANG...
June 12, 2013

"Stopped the pain of trigeminal neuralgia. Side effects like unsteadiness, fingers twitching, sore joints, seeing auras, reading difficulties, speaking difficulties."

6 / 10

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95 Report

Kat...
March 15, 2013

"This is the only medication that has helped me! It's great!"

8 / 10

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83 Report

hlt...
March 14, 2015

"Worked for a while okay. After 2 1/2 months, I developed a reaction to it called 'Stevens-Johnson Syndrome,' which is a potentially deadly skin rash."

3 / 10

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36 Report

Anonymous
July 11, 2010

"Made me exhausted every day (wanted to sleep 24/7) and had changes to menstrual cycle."

3 / 10

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34 Report

JJJ...
April 7, 2016

"Excruciating pain in ear since June. Been on Tegretol since. From 600 mg to 1200. Then surgery. Still having pain. Still on 900 mg."

4 / 10

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23 Report

Lex...
November 9, 2015

"800 mg of Tegretol and still in pain."

7 / 10

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17 Report

Anonymous
September 17, 2022

"The amount seems to need to go up according to the pain. I am on 1000 mg a day, and sometimes the pain still pops in now and then."

9 / 10

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3 Report

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.