Carbamazepine and Dizziness: What Users Say

• Mio...
• Taken for 1 to 6 months
• January 24, 2019

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

• Ano...
• September 7, 2015

For Peripheral Neuropathy "A neurologist prescribed carbamazepine for my wife to treat persistent pain in the area of her surgery (brain tumor). She was on this drug for two months, and it did not have any effect on her pain. It did almost kill her, so BE VERY CAREFUL if you take this drug and have side effects such as low energy, drop in blood pressure, dizzy spells, etc. This can be a dangerous drug - in our case, it depleted sodium levels, and my wife almost went into a coma. It is her third day in the hospital after having to call 911 when she collapsed - she is slowly recovering."

• Anonymous
• June 19, 2011

For Trigeminal Neuralgia "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 worked 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."

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

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

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

Carbamazepine for Trigeminal Neuralgia "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."

• Sea...
• March 27, 2012

Carbamazepine for Epilepsy "Have had complex partial seizure disorder for over 40 years. My main medicine that held me for years was Phenobarbital. When I started having breakthrough seizures, Tegretol was the secondary medicine that has held me okay for the past 4 years. I tried Tegretol XR first, but for me, I felt very tired, some dizziness, poor memory, and very bland. When the Dr. switched me to regular Tegretol, it was totally opposite! I felt alive again, memory sharp, out riding horses, happy as a lark, and felt like my good old self. People should know there are many different medicines for epilepsy these days and also that there is a Tegretol XR (long-acting)."

• Anonymous
• March 8, 2009

Carbamazepine for Trigeminal Neuralgia "Although the side effects can be very difficult to deal with, 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."

• Fel...
• January 25, 2018

Carbamazepine for Trigeminal Neuralgia "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."

• Fel...
• January 25, 2018

Carbamazepine for Trigeminal Neuralgia "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."

• Tpm...
• Taken for 1 to 6 months
• May 26, 2016

For Trigeminal Neuralgia "I've been taking Tegretol for over a month now, right after my TN diagnosis. It took a couple of days to fully work. Ever since then, the pain went completely away. Side effects for me are feeling sleepy and dizzy all the time."

• Ema...
• May 24, 2016

Carbamazepine for Bipolar Disorder "This was the best medication I have ever had. I take 2 at night and 1 in the morning. The only trouble I have had was that one time the doctor tried to up me to 2 at night and 2 in the morning, and it caused a terrible vertigo-like feeling. I couldn't even stand up. Overall, I would say it's a great medication."

• Gle...
• September 29, 2020

For Trigeminal Neuralgia "I am 71 years old and experienced severe face pain last week, so my first port of call was the dentist. I asked him to X-ray all my teeth and give me a check-up. The X-rays showed little difference from those taken 5 years ago, and a thorough examination of all my teeth showed no problems. That evening, I tried to eat scrambled eggs, and the pain was excruciating when I tried to bite down on the food. The next day, I managed to see my GP, explained all my symptoms, and was given a prescription for Tegretol 100 mg twice a day. I took 5 in all. The pain is gone, dizzy and confused, I nearly fell down the stairs. I started to feel sick, couldn't face food. I stopped taking them after 4 tablets and will wait to see if the pain comes back. I am not sure if these pills can be taken sporadically or over a period of time to work. I am scared of this medicine, as my mother-in-law, who also has TN, warned me that the medical profession has doubts about the safety of this drug."

• Jes...
• Taken for 10 years or more
• June 3, 2012

Carbamazepine for Epilepsy "I am 29 and have been on anti-convulsants since 13. Tegretol made me dizzy, sleepy, and black out in random places, so my doctor changed me to Carbatrol. It is crazy expensive without insurance. It works well, but not 100%. Over the years, I've noticed its effectiveness wanes. Increasing the dosage causes dizziness and doesn't seem to solve the problem. However, I have been tried on 3 other seizure medicines, and they did not help at all, so I feel I have no choice but to stick with the rough journey on Carbatrol. It's crazy how epileptics have to fight to prove their disability."

• k4f...
• November 23, 2014

Carbamazepine for Bipolar Disorder "Before this, I'd been ineffectively diagnosed and treated for ADHD and recurrent depression. I've taken this medication for only four days following a bipolar II re-diagnosis, but despite this, I feel much better than I had on Prozac. My combination of irritability, depression, lack of motivation, and suicidal/homicidal ideation (in the form of intrusive mental images) has vanished, and I find it much easier to talk to people and look them in the eye again. I'm taking 200 mg tablets twice a day and initially noticed mild dizziness, headache, and sleepiness, but these quickly vanished. The only persistent symptoms have been hardly perceptible ringing in the ears and lowering in the pitch at which I hear sounds, esp. familiar songs."

• cia...
• Taken for less than 1 month
• December 24, 2020

For Trigeminal Neuralgia "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 three 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 okay."

• Joa...
• Taken for less than 1 month
• July 25, 2021

For Trigeminal Neuralgia "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."

• Joa...
• Taken for less than 1 month
• July 25, 2021

For Trigeminal Neuralgia "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."

• Joa...
• Taken for less than 1 month
• July 25, 2021

For Trigeminal Neuralgia "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."

• Pop...
• August 11, 2017

For Trigeminal Neuralgia "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 a 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, I 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.)"

• Pop...
• August 11, 2017

For Trigeminal Neuralgia "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 a 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, I 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.)"

• Car...
• Taken for 5 to 10 years
• April 17, 2013

Carbamazepine for Epilepsy "I have had epilepsy for 14 years now, and during the first 9 years, I took Carbatrol. At first, it was great, seizure-free, then the side effects kicked in. I was depressed and had anxiety, my emotional state changed. I felt nausea, dizzy, and sometimes uncomfortable in my body. I switched to Keppra, and I'm happy. I'm normal, moods, and so far, no side effects in Keppra."

• Jil...
• Taken for less than 1 month
• December 9, 2018

For Bipolar Disorder "I started Tegretol about 4 days ago, and I've had the most crazy side effects ever. I've been on this medication several years ago, I never had all these side effects before. It feels like I'm high all the time. My face is a little numb, I'm very wobbly when I walk, and I have vertigo. I'm considering stopping it and consulting my doctor. I'm very nauseous when I take it in the morning in combination with my iron pill (ferrous sulfate)."

• Jil...
• Taken for less than 1 month
• December 9, 2018

For Bipolar Disorder "I started Tegretol about 4 days ago, and I've had the most crazy side effects ever. I've been on this medication several years ago, I never had all these side effects before. It feels like I'm high all the time. My face is a little numb, I'm very wobbly when I walk, and I have vertigo. I'm considering stopping it and consulting my doctor. I'm very nauseous when I take it in the morning in combination with my iron pill (ferrous sulfate)."

• Daw...
• Taken for less than 1 month
• March 5, 2017

Carbamazepine for Epilepsy "MAKE SURE YOUR DOCTOR TITRATES THE DRUG AND DOES NOT START YOU ON A HIGH DOSE. The 1 grade should be for my Dr. Not the medication. I am a female, about 105 lbs. My Dr. started me on 800 mg without titration for possible seizures. After 2 days, I was so sick and dizzy, and my head/ears were buzzing like crazy. I had nonstop vomiting, ringing in my ears, and severe indescribable dizziness. I ended up going to the ER. I am sticking to Lamictal and found a new doctor."

• tha...
• Taken for less than 1 month
• December 16, 2020

For Trigeminal Neuralgia "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 it didn't work at all, then 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, drowsy, have problems walking, and now trying to lower the dose to prevent side effects."