Carbamazepine for Epilepsy User Reviews
Brand names: Tegretol, Carbatrol, Tegretol XR, Equetro, Epitol
Carbamazepine has an average rating of 6.5 out of 10 from a total of 71 reviews for the treatment of Epilepsy. 58% of reviewers reported a positive experience, while 31% reported a negative experience.
Reviews for Carbamazepine
- Scott
- Taken for 10 years or more
- October 11, 2020
Tegretol (carbamazepine) "I was on Tegretol from the mid late 80’s till 2016. It helped in the beginning. But as I got older, add on drugs were needed. Then in 2014, I could not stop eating. I was always hungry, yet loosing weight. I was diagnosed with hyperthyroidism. And I was put on medication for that. In 2016, my doc took me off tegretol and replaced it with lamictal. Once off the tegretol, my thyroid started to function normally. And medication for my thyroid was no longer needed. It’s not a bad drug. But your body changes over time. Another negative about the drug was how frequently I had to urinate. I would have to go at least 15 if not more times a day. Towards its discontinuation, I was on 1200mg of it daily."
- Seatt...
- March 27, 2012
Tegretol (carbamazepine) "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)."
- Momof...
- Taken for 10 years or more
- January 25, 2013
Tegretol XR (carbamazepine) "I am 33 yrs. old and have been taking Tegretol XR since I was 18 yrs old for grand mal seizures. It has been great.....I have had two healthy children and maintained my medication during my pregnancies and had no problems. Have been seizure free for 10 years!"
- Noname
- Taken for 6 months to 1 year
- October 9, 2019
"This stuff was horrible for me, did not stop sleeping siezures and side effects gave me such a bad attitude, I was very grouchy but was numb to most feelings for other issues. I didn't want to do anything, ruined my appetite and my relationship. 200 mg twice a day"
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- Anonymous
- July 14, 2009
Tegretol (carbamazepine) "I HAVE HAD SEIZURES FOR TWENTY (20) YEARS NOW. i HAVE TAKEN EVERYTHING THERE IS TO TAKE, NOTHING WORKED EXCEPT FOR TEGRETOL. HOWEVER, I STILL HAD BREAKTHROUGH SEIZURES, SO NOW I TAKE KEPPRA WITH THE TEGRETOL. I HAVE NOT HAD ONE SEIZURE FOR THREE (3) YEARS NOW. WOW, OH WHAT A FEELING!"
- Mnyc
- Taken for 1 to 2 years
- October 25, 2019
Tegretol (carbamazepine) "Tegretolol is the only medicine that stops my tonic clonic seizures. I've been on it over a year, taking 1,000 mgs a day. The first month I had memory problems and drowsiness but that went away fast. The biggest side effect I had that never went away is severe depression caused by it. My depression is gone thanks to Lexapro 20 mg a day. I highly recommend Tegretol for tonic clonics seizures due to Epilepsy."
- Anony...
- December 31, 2010
Tegretol (carbamazepine) "I am 39 years old now, and have been on Tegretol since I was 20. I have not had a seizure for 19 years. Then, this past weekend, I went on a trip and did not take my Tegretol for 3 out of the 4 days I was there. The next day, I had a grandmal seizure and the ambulance came. I attribute it to becoming complacent and it really bit me, but I will not make this mistake of being lazy and not taking it again. I was on 200 mg for the last 3 years without a problem, but will increase it to 400 mg just in case. Tegretol really does work wonders and I hope to be seizure free the rest of my life, if I can faithfully stay on this medicine."
- Anonymous
- July 7, 2010
Tegretol (carbamazepine) "No seizures whilst on Tegretol. Extreme headaches first 4 weeks, extreme tiredness. 6 weeks after starting Tegretol hives started to appear and got worse. Blood tests showed liver enzymes were 3 times higher than usual and red blood cell counts slightly reduced. Thyroid gland swelled up also. All these were shown to be a severe allergic reaction to the drug. People should be aware of this as a possibility."
- Kate
- Taken for 10 years or more
- May 20, 2014
Tegretol (carbamazepine) "I have been on this medicine for 27 years. Except for extreme tiredness, I seem okay. Have not had a fit when on this medicine. One week I came off the medicine, between suicidal thoughts, crying jags and depression, I had massive fits. I have not been off since. This medicine seems to affect the liver, so liver tests are a must."
- Anonymous
- November 3, 2009
Tegretol (carbamazepine) "I have taken Carbamazepine for 36 years and have experienced no significant side effects. I take 400mg per day and have gained almost total control of my condition. No seizures since 1983. Do not cease taking Carbamazapine suddenly for any reason whatsoever. The withdrawal can be extreme. The ER medication is very useful."
- beach...
- June 24, 2014
Tegretol (carbamazepine) "I have been on Tegretol 31 years as well as Lamictal, excellent until I turned 52. Then had some partial seizures..... so my neurologist upped it from 400 to 800 Tegretol and upped Lamictal as well. Getting control slowly. Been 5 months....now..improvement is happening but slow...confident..depends on what meds suit your body. Keep positive."
- Ash
- Taken for 1 to 6 months
- January 16, 2019
Tegretol (carbamazepine) "I'm 18. I had random contractions and twists in my arm since when I was 10. It lasted for only about 0.005 secs. And then gradually increase. Now I have attacks that last for hours (the longest one lasted 9 hrs). I used to consult ortho docs since I did not not know what it was. They kept telling me I had muscle cramps. Because I do martial arts I believed it. But at last I consulted a nuero when once I had a bad attack and the ortho doc was on leave. He diagnosed me with exercise induced paroxysmal dystonia. He prescribed tegretol and I started on a low dose. It didn't seem to help me. I gradually increased its dose and now I don't get those attacks! I have no family history of disorders but one cousin with epilepsy."
- DennisF
- March 25, 2015
Tegretol (carbamazepine) "I had 1 seizure, 2 weeks after our son was born... So they put me on 200mg twice a day. I took it, maybe not religiously, but atleast 1 pill a day. Well I missed a full day, and had a seizure in my sleep again. I can't help but think it works well, if the first time I miss a full day I have 1. Mad at myself? Yes. Glad I have Tegretol? Yes."
- Jesica...
- Taken for 10 years or more
- June 3, 2012
Carbatrol (carbamazepine) "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. Its crazy how epileptics have to FIGHT to prove their disability."
- sarah...
- October 31, 2010
Tegretol (carbamazepine) "I have been using Tegretol retard 200mg for ten years now. I made the mistake of forgetting to collect my script from my doctors for a week! I have been lucky as I did not have a seizure, but my word I have been so poorly, depressed, loss of appetite, and body tingles, from my lips to my toes. I never realized how important it is to take my pills till now. I will never make that mistake again, the 1st day I started them again, I was a ball of tears, very sad and tired, but a day later I'm back to my old happy self. I'll never forget them again."
- John
- Taken for 10 years or more
- May 8, 2019
"I would advise if you are taking tegretol on a large dose, say 600mg or 800mg twice daily. Ask for a thyroid serum blood test and testosterone levels as it will lower testosterone levels and damage the thyroid."
- apple...
- Taken for 6 months to 1 year
- February 6, 2015
Tegretol (carbamazepine) "Oh my. I was put on carbamazepine for possible epilepsy and it didn't seem to do anything - but the doctors said to just keep trying. However, it continued to worsen, making my focus dip considerably, and causing my hearing to change! (I'm a musician, I could tell - it dropped a semitone down.) Was very annoying."
- Dawn
- Taken for less than 1 month
- March 5, 2017
Tegretol (carbamazepine) "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 105lbs. My Dr. started me on 800mg without titration for possible seizures. After 2 days I was so sick and dizzy and my head / ears were was buzzing like crazy. I had non stop 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."
- rowdy...
- Taken for 10 years or more
- August 13, 2013
Carbatrol (carbamazepine) "I was put on this medication over 11 years ago. I had to be boosted up to 1200mg daily to get the blood serum level in the right area. It had to be combined with Keppra to finally help me obtain control of my epilepsy. It has been very effective the past 11 years, and I have had no side effects with it."
- Carba...
- Taken for 5 to 10 years
- April 17, 2013
Carbatrol (carbamazepine) "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."
- Lynn
- Taken for 1 to 6 months
- May 31, 2018
"Hospitalized 16 days for Keppra toxicity & lack of follow up by my Dr. Even though I took as prescribed. I quickly dropped from 130lb to 106 lbs as I was unable to eat/drink severe nausea terrible pain, right side unable to speak delirious forgetful seizures 1st time in decades unable to care for my husband/self Had to place my husband in a care facility which was the saddest thing! Lost my drivers license for 6 months due to a seizures so then couldn't visit my husband/get food. Had Walker even though I am young! I blame much of this on the Dr who did not listen to me as I described my extreme changes via phone caused by Keppra. I gave up on pdoc and got someone to take me to another hospital out of town where they determined I had keppra toxicity. Three Dr's stated it is a miracle I am alive! A toxicity specialist said it would take me a year to recuperate I was so ill, it did. I thank God for giving me the strength to get through that Nightmare."
- xert
- Taken for 10 years or more
- October 18, 2013
Carbatrol (carbamazepine) "I'm 51, been having seizures since I was 12. Carbatrol and Depakote are what I'm taking now for about 20 years. These are the only medications that seem to work for me, I've been considered controlled, I drive, the best thing that happen to me. Only thing they are just so expensive."
- Alex
- Taken for less than 1 month
- December 8, 2019
Epitol (carbamazepine) "My experience was ok in the beginning till I stopped taking them then started taking them again I felt horrible my mind was all over the place my anxiety was kicked up a notch I thought I was going crazy but my doctor said it will subside soon but I couldn't handle the 200mg twice a day so I cut one in half for now till my body gets used to them again. I'm glad to know I'm not alone with this."
- Mr X
- Taken for 10 years or more
- August 20, 2016
"I have been on cbz for 35 yrs. 20 yr 600mg / 10yr 400 mg / 5yrs 200mg Since then no grand-mal . However absences remain on 600mg level. So I (slowly) deminished the dose two times and the absences became fewer ( first 10/yr. now 2-3/yr) . Cbz worked well in preventing GM seizures but absolutely not in case of absence seizures. Five years ago I had one seizure because I thought I could stop taking cbz. After two days it went wrong and I returned to 2x 100mg. So don't do this. It is bound to end in a G-M!!!!"
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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Tegretol (carbamazepine) "There is nothing more scarier than that first few seconds when your seizure starts and nobody is around. Tegretol has saved my life! I am so thankful my doc put me on these tablets 200mg three times a day and I'm happily seizure free."