Tegretol for Trigeminal Neuralgia User Reviews (Page 2)

• 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."

• 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."

• RN-...
• Taken for 1 to 2 years
• February 20, 2025

"I took 300 mg 3x a day when I was first diagnosed, May 2023. I had some relief but not enough. Added gabapentin & Lyrica... my pain was improved, but I couldn't function due to side effects. Had MVD 5/30/23 --> 100% pain reduction for 15 months. Then the zaps & horrible ache returned. Had radio-frequency nerve ablation 9/2024. Improved but still in pain. Back on Tegretol. I'm currently on a high (too high??) dose; 400 mg 2x a day... 2 weekends ago I had to go to the ER from work; I had horrible double vision, unsteady, slurred speech. No stroke, but TIA is suspected. I've had the beginning feeling of double vision a couple of times in the last 2 weeks. Ophthalmologist - eyes are good. Neurologist - scans look good. Conclusion --> my body isn't processing Tegretol well, my blood levels are too high. Stepping down to 300 mg 2x a day, 1x if I feel good.... this drug is a life-saver for SO many! Just be cautious of the annoying side effects."

• 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."

• 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!"

• 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."

• 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!"

• 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."

• 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."

• 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."

• 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."

• ANG...
• June 12, 2013

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

• Kat...
• March 15, 2013

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

• 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."

• 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."

• Anonymous
• July 11, 2010

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

• Lex...
• 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 1000 mg a day, and sometimes the pain still pops in now and then."