Drug Ratings for TEGRETOL-XR

Average Rating: 3.4 (47 Ratings)

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Key to Ratings: 1=LOW (I would not recommend taking this medicine.)
5=HIGH (this medicine cured me or helped me a great deal.)   

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    Charts & graphs: Reviews Summary for TEGRETOL-XR  | Top 10 Adverse Effects (reported to FDA)

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 3  Epilepsy Early morning joint stiffness is a definite side effect..it does wear off after 30 minutes or so.Walking down the stairs in the morning after getting up is very slow and precarious. I changed to Lamictal because of increase in appetite and resultant weight gain on Tegretol.Whilst on Lamictal I had no stiffness whatsoever-it was a surprise..totally unexpected bonus.Unfortunately it kept me awake and after a year on it I had v.bad seizures and went back on to Tegretol Retard.The stiffness returned and I noticed an immediate slowness in my thinking.I am 67 and and it is now 17 years since I went back on to it .. total no.of years taking Tegretol is 37 less 1 year when I changed to Lamictal. I have injury-induced aches and pains in addition to the Tegretol side effects.One morning I felt less stiff and realised I had forgotten to take a tablet the night before.As an anticonvulsant it works so I am afraid to try anything else.Another bad side effect is increase in cholesterol..mine was 10 plus!!Am now on statins..at least for now. F 67 10 years
600 mg

 1  Nocturnal frontal lobe epilepsy Dizziness, ringing in ears and extreme vomiting. This could only happen to me! My sleep neurologist started me on 800 mg of Tegretol for NFLE and she forgot to titrate the dose. After taking it for one night and the next morning, I ended up in the ER due to extreme dizziness, vomiting and a ringing in my ears. I switched Doctors and changed to lamictal (titrated) which is working well. F 40 2 days
2X D

 1  Seizures Just about every side effect listed on your page, incompetence, mood disorders, instability, feeling like a drunk, could not remember what I had done that morning, started to contemplate suicide as I was not able to cope in my job and perform as a provider for my family. Now on Epilim and I am back to the old me. Please if you are anything like I was go and persuade your neurologist to try something else. M 55 400 days
500 2X D

 1  Mood Disorder When I was a teen my anxiety was misdiagnosed as Bipolar Disorder and the doctor gave me tegretol, not sure what the dosage. I went from weighing 115 to weighing 163. I stopped being able to remember everyday words as simple as license plate or macaroni. Sometimes I couldn't remember my own name, age or phone number. Thinking became so hard for me that I had to drop out of school. My mood did not get any better, the doctor just thought it did because I was no longer able to express any emotion. My hair stopped growing, my nails got thin and they were always breaking, my skin broke out in the most horrific acne I've ever seen. I slept about 16 hours every night and still never felt rested. After about 3 years I had enough of living in that zombified state and stopped cold turkey, the withdrawals were horrible, shaking and irritability like you would not believe but it was worth it to get that devil drug out of my system. It took at least a year for my memory to come back and for me to f Hated it F 20 3 years
2X D

 4  Trigeminal neuralgia Weight gain, memory loss (technical words, names), depression While Tegretol has been right for my pain, I would like to pursue a different treatment to avoid the side effects. Acupuncture has been mentioned as a possibility. M 52 6 months
400 2X D
 5  Epilepsy Fatigue It has helped he reduce the amount of the seizures I get. M 28 23 years
1400 3X D

 5  Trigeminal Neurolgia Tired, sometimes I struggle to find words, weight gain. I can tell it's burning through the other meds I am taking, so some adjustment is still needed. It has been a miracle drug for my head pain. I still have daily pain, but not as bad. I have to take 2 in the morning and 1 at night because I was having problems waking up in the morning. F 34 8 months
20 mg 3X D

 1  temporal lope epilepsy Pain headache confusion can't wake up forget things but remember bits and spices later F 28 2 months
800 mg
 3  seizures drowsiness/tiredness, slight confusion, some memory recall problems esp short term (though can remember later usually). mostly its the drowsiness... i take 150mg in the morning and 200mg at night, and it can be tough waking up sometimes, like in a fog. I was on 200mg during the day but went back down to 150mg as i couldnt function properly. Thinking of going back to 150mg at night (as my original dose) however am concerned about it not having quite enough effect and i can get some very slight seizurelike activity (without unconciousness or anything, just like a cut off semi seiz..) wierd. But this tiredness, lethargy, bad recovery, im not sure if its just the teg or some remnants of a more serious issue i had with tiredness even before taking it... like chronic fatigue/system worn out... All in all though the tegretol has stopped my seizures (one every 6weeks or so) for 8months now which is great. M 34 8 months
150 2X D
 2  Complex Partial Seizures/Mood Inital side effects lasted for about 8 days. Although were strangley enjoyable, felt quite drunk! Giggly, silly, goofy. A metalic tast in throat some times, a bit tired, a bit unsteady. Not the best - but manageable. After the first 8 days, the inital side effects dropped off and I began to feel very drugged and scared. My mood became very unstable. I am now weening off it. FYI: I am very sensative to medications in general!! The inital side effects were fine, although once it settled in - I wasn't fine at all! But that is just me. I have heard a lot of people have done well on it. F 29 11 days
200 1X D

 1  seizures Side effects were very minimal. Mouth dryness. Mood was exceptional. Very happy all the time. Also slept really well and didn't even wake up tired. I had been on Keppra for 2 1/2 years and never slept and was tired all the time. I thought this was going well. Then I developed flu-like symptoms after about two weeks at full dose. I started out at 100mg. I had horrible head pain, neck pain, chills and body aches like I had been thrown down the stairs. I had a blood test and told to stop the tegretol immediately. After I stopped the medication, I thought the symptoms would stop, but they did not. They got worse. I had toxic liver something. This has been going for a week and the doctors say it might be another week. I never would have taken this medication if I had known this might happen. F 45 1 months
200mg 2X D
 5  Seizures Get tired easily. When I started getting seizures I was put on Dilantin which was not working for me because I was getting major mood swings. When I was 11 I was put on tegretol XR and that's when I started to get less and less seizures. Now, I have been 7 years without a seizure and I am very happy with what tegretol has done for me! F 20 9 years
300mg 2X D

 5  siezures M 49 10 years
400MG 2X D

 4  Bi-Polar II Fatigue, goes away somewhat, hair loss, skin thinning and spots, easy to burn, dry mouth, insomnia, short term memory problems, word recall problems sometimes, increased appetite For me living without a medication like tegretol is just not possible. As such medications go I have had the fewest side effects on tegretol. I know the hair, skin and probably memory problems have a lot to do with vitamins and I do take a multivitamin but it is not enough. I do not gain weight because of the tegretol but I have to watch my diet because I do feel hungry a lot of the time. Still well worth living with these side effects than the dark hole of depression I most often find myself in with no medication. F 32 8 years
600mg 1X D

 4  seizures General fatigue, ability to fall asleep anywhere, anytime. Loss of sex drive. Weight gain. Serious brain fog. It controls my complex partial seizures, which is good. I haven't had a seizure in more than three years, and I'm now starting to taper the dose downwards VERY slowly (going down by about 100 mg/day this year, maybe another 100 mg/day next year.) On the not-so-good side, Tegretol completely erased my sex drive. It also kind of blunts my emotional responses to events, so that I retain a kind of detachment (which makes sense when you remember that it's also prescribed as a mood stabiliser). I would go off it if I could. F 51 4 years
250 mg 2X D

 4  Partial Epliepsy Weight Gain Has ended the grand mal seizures and has stabilized the seizures to a decent but not total control point. Also tried Depakote and Zonegran in conjunction and they are not totally gone away. Overall good but not great. M 21 10 years
500 MG 2X D

 3  Seizures Severe short-term memory loss, occasional blurred/double vision, speech difficulties. I've been prescribed others, Depakote, Neurontin, Gabatril, Topamax, Keppra. Still on Keppra, speech problems worsened once Keppra was added. M 43 32 years
 4  Epilepsy weight gain, tired, skin changes and brown marks, hair loss, osteoporosis F 65 21 years

 2  seizures my s daughter is autistic takes tegratol 1hr after taking screaming agatation red skin on face F 30 20 days
 3  tonic clonic seizures I have been on this medication for 15 years (since I was 8) and have had no severe issues. Sometimes I would feel dizzy or disoriented, nausea, or fatigue. That's about it. I still get seizures on the medication, especially if I miss a dose, but not always. I am thinking of switching to Keppra bc Tegretol can produce osteoperosis in women, and newer epileptic drugs tend to have less severe side effects. And getting pregnant on tegretol is not recommended either. Just a heads up. F 23 15 years

 2  Grand Mal Seizures Headaches, Loss of Memory, Sleepy all the time. Slurred speech. of balance. cold, Hair shedding. bad drug F 42 3 months

 3  Epilepsy simple partial seizures Tiredness after each increase in dose.Also slower in thinking. I find most days having to sleep during the day.Some days feel absolutely exhausted. Currently taking 1000mg per day.Not had another seizure since last increase beginning of July.Considering changing to Keppra because of fatigue F 46 7 months

 1  Seizures- from Shunt Tegretol over long term (more than 36 months) causes brain damage in patients. I was told this by my neurologist after my seizure activity increased and brain function went down. Good for short term, bad in the long term M 29 18 years

 4  bi-polar disorder II hypomania 11/02/07 - some daytime sleepiness but none overall 11/02/07 - I have taken a lot of different mood stabilizer meds and this is the best one so far. It is very hard for me to wake up in the morning but that has been a lifelong struggle. Also, I feel like I crave sweets and have some stomach issues (indigestion, IBS symtoms, etc.) but that may not be a result of the Tegretol. I am also taking 50mg of setraline (Zoloft) and was on Rozerem. I started with the non XR version of carbamazapine and it made me feel drunk and very dizzy in the morning. F 35 7 months

 5  Seizure disorder I don't take Tegretol but rather Carbatrol ER capsules F 65 26 days

 4  Trigeminal Neuralgia Blurred vision every now and then, feeling a little agitated every blue moon and lingering headache most days. Tegretol has been a miracle drug for me. After 15 months of severe facial pain and being misdiagnosed with tmj and dental problems, inner ear infections, bad vision, neck problems, you name it they claimed I had it. They were giving me every drug known to man until I finally was diagnosed by an emergency room doctor (on a long painful night) when I could not take the pain anymore and thought I would end up dying. After some face and jaw x-rays he said I had trigeminal neuralgia NOT tmj, he put me on Ultram which took about 50% of the pain away and told me to go see a neuralogist. The neuralogist put me on tegretol and about 90% of my pain is gone as long as I stay on track. All day long I seem to have a lingering mild headache but I will take that pain anyday of the week verses the pain I have had to live with before. Every once in a while the pain comes back and the Tegretol XR does not seem to be working but it is few and far between, most days it is wonderful. I really have not had F 41 14 days
 2  myoclonic seizures feeling tired, swelling ankles, increased seizures!!!, blurred vision It sucks, I had less seizures before I started taking this medicine F 22 2 years

 5  petit-mal seizures causing migraine I am more tired when I take this medicine. It is very unusual for a person who has my kind of seizures to be on this medicine, but it is the only one that helps me. If I don't take it, I will have a migraine the very same day. I take 2 200 mg tablets twice a day- that's 800 mg/day for those of you who might be confused. I was on Depakote before this, but I grew out of it. F 23 12 years

 1  Mood Acne like I was 14. Just horrible out of nowhere that took weeks to heal. I was so confused too. uugghh XR my ass M 25 3 weeks

 4  epilepsy Short term memory problems, have to concentrate to remember something detailed like an address for example I take 200mg twice daily. Epilepsy caused me to have to re-train from a Chemical Engineer to Information Technology. Don't know if related to tegretol, but I have to frequently urinate, and feel fatigued. However, when I exercise it helps. I play squash three times a week to a good standard and have a no problems with the stress of my job. The quality of my life exceeds incomparably that without tegretol. I have driven for 14 years. M 44 16 years
 4  Bi-Polar, nerve pain DIZZINESS and intoxicated feeling. The off and on dizziness is most bothersome. Also, if I forget to take it at it's usual time, I start to feel very sick. It really make me feel drunk at first, but the effects slowly wore off and I feel great on it now. I take 600mg a day and I feel great. F 29

 4  Epilepsy Standing balance problems at the beggining, drowsiness, fear. M 34 5 years
 3  Seizures, Bi-Polar Sour Stomach,Restlessness,lack of clarity in thought The drug took forever to find the proper dosage. I now take 1000 mg's a day but I occasionally have interaction problems with the vicodin I take for my knees and back and the clonazepam for sleep. The back of my head would start feeling overpressurized and my eyes would turn yellow, a sign of over dose from one or all drugs, but I never take moire tha usual. A day of of them will usually do the trick. M 31 4 months

 2  mania standing balance problems, wrists became so stiff and painful I could not do pushups any more. blood tests are bothersome, getting off can cause siezures, after I got off my wrist pain went away. Do not overtake this medication, I know two people who did and their judgement of distances made it impossible to walk until the tegretol cleared. Drugs that slow liver cytochromes, like some antibiotics, can cause an overdose without any change to you normal dosage. M 46 2 years

 5  nocturnal seizure disorder Actually, none. It's awesome. I am able to only use 250 mg a day (two big, one little), which is, I think, possibly beneath the lowest typical dosage. The timed-release is just grand. BTW, I was prescribed this because I am a woman of childbearing age and my two top-notch female neurologists told me that this was the best for childbearing. I had a child with it and had no problems either. Good job. F 44 19 years

 5  nocturnal seizure disorder none oops. sorry. I posted earlier and said I was taking 250 mg a day. I'm not. I'm taking 500 mg a day. 200 mg in the mornings and 300 at night. I was taking 600 but pushed my doc to lower it since I prefer to take less in the daytime. I heartily disliked dilantin. Ick. F 44 19 years

 1  seizure disorder Have experienced ringing in ears, excessive water weight gain/swelling (20 lbs), pain and feeling of cold in areas where water is most prevelant, memory loss, aggression, to name a few. Would not reccommend it to others. F 29 4 years
 4  epilepsy, petit mal,tonic clonic. Initially drowsiness which went away after a week. Took Dilantin and Mysoline for 30 years. Couldn't take the drowsiness,lethargy, memory loss, slurred speech depression and, lack of concentration. After switching to Tegretol XR all my seizures were under control except on the rare occasion(3 years since my last seizure). Wish I, swiched 20 years ago!!! M 41 9 years

 5  Seizure Disorder (grand mal) None. Maybe some drowsiness. take 400 mg 2x per day. Just started this large a dose after taking 200 twice a day for 10 years. Working great, no seizures since upping dosage. M 27 1 years

 5  complex partial epilepsy Haven't had side effects Tegretol XR has been a big help. I stated out taking Tegretol Chewables but the dose wasn't strong enough. I'm now taking 700 mg a day and can almost forget that I have epilepsy M 38 9 years

 5  trigeminal neuralgia slight drowsiness Tegretol has been a miracle drug for me. After 8 years of being misdiagnosed with atypical facial pain, tmj, dental problems, even cervical facet joint syndrome, a family practitioner diagnosed trigeminal neuralgia and put me on tegretol. For 8 years I took Oxycontin, Vicoden, Darvocet, all kinds of muscle relaxers and antidepressants, etc. and nothing helped. I tried acupuncture, hypnosis, chiropractic, homeopathic medicine, biofeedback, and had counseling with a pain psychologist. Several days a week I experienced nausea and vomiting from the excruciating pain. I prayed for God to let me die. After the third day of taking Tegretol XR, the pain was reduced to an annoying cramp, and since then I have experienced almost complete relief. It has been a Godsend. F 48 10 days
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