User Reviews for Tegretol to treat Epilepsy
Tegretol has an average rating of 6.5 out of 10 from a total of 34 reviews for the treatment of Epilepsy. 62% of reviewers reported a positive experience, while 38% reported a negative experience.
Reviews for Tegretol
"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."
"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)."
Frequently asked questions
"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."
"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."
Are you taking this medicine?
"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."
"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!"
"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."
"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."
"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."
"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."
"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."
"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."
"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."
"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."
"Began taking Tegretol in 1986 along with Epilim, had the op in 1991 and have remained on Tegretol since. Somethings I have noticed over the years although I don't have any medical evidence to back this up only self observation are. Massive increase in body hair. Not on the head but over the rest of the body. Most of my nails split down the centre of the nail. As for controlling my epilepsy can not say they really did, prior to my operation, at first all was hokey dorey, then the body seemed to get used the medication and as a result the dose increased. Today 24 years after the operation I remain on 1200mg a day. Seizure free, thanks to the opp, although i do remain on the tablets."
"After being on this medication for seven years I am still having break through seizures. I have now developed lucopenia as I did with Depakote. Now I have to go through the trial and error of finding a new medication."
"I have been diagnosed with absence seizures for 6 years now, and have been taking Depakote ER. I have been seizure-free for 4 years, but have had severe migraines on and off, usually more during times of intense stress. My doctor prescribed me Tegretol to take as needed for them about a year ago, and it has always been 100% effective. The only side effect is that it makes me very drowsy."
"I also suffer from bipolar 1 disorder and chronic pain. The drug so far has made me eerily calm and it's almost like I'm high all the time. So far so good... It has calmed my mania down since I am rapid cycling. Also my short term memory hard been affected. I am a Veteran as well."
"The XR seams better than the traditional form used in the 80s that resulted in sodium depletion. This form causes twitching, sporadic and rapidly occurring tremors that make sleeping difficult, increased urination frequency, some minor dizziness at first, and possibly elevated skin sensitivity to sunlight."
"My neurolgist just discovered I had seizures about a month ago and it has been constant trial and error finding a medication that will work. I was taking 600mg of Tegretol for the last week and I developed a awful red rash and itching all over. My doctor has changed me to dilantin today and I hope I do better on that. Keppra was the first drug and that didn't help."
"In the early 80's my five year old daughter was being treated by a top children's neurologist for focal seizures which she started having after a severe, undiagnosed life threatening illness at 4 months. She was changed from dilantin to tegretol by this doctor who I had great respect for when I told him the side effects from this drug were harming my child. She couldn't remember anything, she acted dazed and confused, she scared me concerning her development while taking tegretol. We fought over changing the drug which he said was new and better than dilantin. I said I don't care she doesn't act like this on dilantin and I'm not leaving your office until you change it. So now I read these side effects and I was right. I still love that doctor but I knew my child too... And also My other kid reacted better to Rondec syrup for bronchitis than that Albuterol new drug they changed her to, it was absolutely clear to me that while new drugs are wonderful and I am grateful for them, new needs monitoring"
"Have been taking for 13 years. Have been seizure free. It has changed my life. Only side effect I've noticed is a little more tired than normal. Only sometimes. Other than that good to go!"
"Been on Tegretol 200mg twice a day for partial seizures. It's wonderful, it's really helped. I'm down from 10 seizures a day to 8. Have tried everything else hopefully getting there."
"This medicine has given nothing but trouble. Headache, Feeling sick and worse of all I now have a very itchy rash all over my body which is driving me round the bend."
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"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."