There are 145 ratings for the drug: TEGRETOL in the Askapatient database.

Key to ratings for tegretol: 5-Very Satisfied: this medicine cured me or helped me a great deal. 4-Satisfied: this medicine helped. 3-Somewhat Satisfied: this medicine helped somewhat. 2-Not Satisfied: this medicine did not work to my satisfaction. 1-Dissatisfied: I would not recommend taking this medicine.

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Rating	Reason	Side Effects	Comments	Sex	Age	Time Taken		Date Added
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4	Bipolar I & Migraine	Nausea, headaches.	After playing with my meds for 13 years, I finally found an awesome combo. Tegretol had minimal side effects in comparison with the many other mood stabilizers I've been on. I haven't had an episode in over year :) I take 800mg daily and combined with seroquel & one week of prozac a month (plus a xanax here and there to "tone myself down" a bit) - I'm good to go.	F	27	18 months		2/3/2010
5	bipolar 2	i have peace now, i take 600mg per day. only thing is it is hard for me to wake up and i don't know always what is going on if you wake me in the middle of the night. i gained weight, but i cant say for sure it is the drug, also take effexor. but without the tegretol i would not have a stable life!	TEGRETOL IS THE BEST THING. i used to be troubled with very bad dreams, now i still have the dreams but it is like the stuff in them is happening to someone in another room down the hall!!!!HOORAY FOR TEGRETOL plus i would get so angry my head would buzz, or so depressed i wanted to die, or so happy i would be overexhilirated. now i get normal mad, normal sad, and normal happy. not at all like i don't feel anything.	M	34	2 years		2/2/2010
3	Seizures due to haemingioma	Drowsiness (extreme at the moment as have increased dose), constipation but better diet has helped, bloating, loss of sex drive, like being in a fog sometimes, short and long term memory loss, difficulty with words (use thingamigig/whatsit a lot !)	I think tegretol has helped my condition except recently had a big increase in seizures and have had to increase dosage to 500 from 400 in mornings and this has zonked me out. Think i will risk seizures rather than feel like this and go bk to previous dose when i only had small tonic/clonic seizures lasting a few seconds every few weeks. Following lamictal and epilim trials not being that good have taken the night dose of 500mg for the past few years with 30mg Clobazam (Frisium) at nighttime which has worked well.	F	47	18 years		1/28/2010
4	Bipolar depression	constipation	My cholesterol level has gradually risen ove 3 years to 6.6	F	53	8 years		1/24/2010
4	epilepsy	Fatigue! Weight gain of 10-20 pds. Occasional dizzy spells. Intestinal issues. On the positive side, it reduced my depression/panic attacks and it did stop the seizures. I take generic and the coating can be very thin! I have had some scary moments swollowing and the pill sticking in my throat.	I've had epilspsy for 21 yrs and on 200mg 2txs. I have a terrible memory and relate to seniors. We talk about all the stupid things we do because of poor memory. Its due to epilepsy not the drug, since have dealt with this since my early 20's. I only started treating the seizures with the med 5 yrs ago.		33	5 years		1/6/2010
4	epilepsy	Drowziness periodically	I used to suffer from dizziness. Eventually I realised the dosage was too high. Without the consent of the neurologist I reduced the dosage by 400mg/day. The dizziness stopped without having additional seizures. Obviously the dosage was too high.	M	47	30 years		12/31/2009 Email
4	Sub-clinical seizures	Headache, sometimes very bad, on most days. Difficulty with short term memory. Difficulty recalling names and terms. Have to consciously word search.	Seems to have decreased the seizure activity but the price has been bad headaches and memory problems.	M	53	6 weeks		12/26/2009
4	Grand Mal seizures while sleeping	Weight gain of 30+ pounds and I can't get rid of it, suspected loss of muscle control, loss of motivation, slight depression	I have gained weight of 30+ pounds and can't get rid of it. It is very frustrating. I am on a controlled diet(less than 2000 calories a day for a man who is 6"2" and weighs 230 pounds). I also work out 5 times a week. I do 30 minutes of cardio on a elliptical and lift weights for about 40 minutes. I have been doing this for a while now and have had no loss of weight. I also have lost my motivation to do anything. I am an artist and I have no creative drive. I want to switch drugs to Keppra as I have heard that it does not make the user gain weight like Tegretol does. The good thing is I have had no sleeping Grand Mal seizures since I have been on the drug. That is why I gave it a 4.	M	33	9 years		12/4/2009 Email
4	Grand mal seizures	Memory not nearly as good, vision blurred if taken dosages too closely together. Lowered salt in the body.	Have to change medication because I'm told by my doctor that my low-salt problem will not get better.	F	35	2 years		11/8/2009
1	Bipolar	? Don't know?	I don't know why I'm taking this drug. I've never had a seizure. My psychiatrist says its for my bipolar disorder. Now, I'm taking so many drugs, I don't know what this one does. (Lithium, risperdal, advair, etc....)	F	33	14 years		11/4/2009
4	Cavernous Hemangioma-removed	lethargic, vertigo, memory loss	still have very small seizures	F	48	8 years		10/29/2009 Email
4	Left Temporal Lobe Epilepsy	60lb weight gain in one year. Tiredness, no short term memory, mild dilopia when tired, occaisional shaking on right hand. Major depression.	Have been on Tegretol since 1997. I did not have good luck with the generic form. Am at 1200 mg with LCR pills and seizures are controlled. Had to add antidepressant to control depression swings. Both together have allowed me to work uninterrupted in a very technical field, do travel and high tension training. Supplement short term memory issue with good PDA. Even with weight gain cholesterol remaining normal, heart, lung, liver function good. I walk five miles a day and have not been able to drop weight more than ten pounds.	F	50	12 years		10/29/2009
4	Bipolar	Itchy skin....extremely itchy skin	After taking it for the first couple of weeks I experienced sleepiness and that was all but now after a month of taking it I am experiencing itchy skin towards the end of the theraputic range. Once I take my next dose in the evening the itchiness goes away some. I am taking 200mg twice a day.	F	39	30 days		9/16/2009
3	Temporal Lobe Epilepsu	weight gain (15 lbs so far), short-term and long-term memory loss , terrible mood swings (losing my cool at the drop of a hat!), hair loss, weakened teeth, loss of concentration, no energy, muscle twitching, loss of words, migraines, acne, insatiable hunger for carbohydrates, there are more side effects - these are just what I can pull out of my head at the moment.	I was 29 when I had my first seizure. I had another seizure later that night, but no grand mals other than that. I was diagnosed with epilepsy, even though all of my MRI's, EEG's and CT Scans came back normal. I had auras frequently (mostly around the time of my monthly cycle / estrogen fluctuation), which for years before the grand mals I mistook as panic attacks, which started after me being in my early 20's and took drugs (ecstacy mostly). When I take this drug I don't have auras, but the side effects far out weigh the benefits for me. I had taken it for a few months and then stopped. I don't like taking man made drugs. I don't like the idea of synthetic things being put into my body to make my brain function "properly". After a week long bout with auras and sleeping most of the time I went back on Tegretol recently. I've completely forgotten what happened in the week while I had the constant auras, and also the week after that. I'm weaning myself off of the Tegretol now, as I can't handle the side effects any longer. (total time on the drug - 2 months a year and a half ago, and 2 months now)	F	30	4 months		8/24/2009
5	EPILEPSY	Gum swelling (mild), sleepier than normal, intolorence to alcohol, mild sun sensitivity	Have been using this pregnancy-safe dosage for 28 years now- eventhough I'm past the pregnancy years- no seizures. Just need more than average dental cleanings, sunscreen, more sleep (like 2 hours). Enables me to drive. Need regular liver panels to check for drug metabolism/toxicity. Want to see if 400 mg daily is still appropriate as I'm aging- drugs are more toxic generally as one gets older.	F	53	28 years		8/3/2009
2	Severe Mood Swings	very tired, weight gain, sluggish, bloating, and i have CRS now, can't remember &^%$!	I am in the process of weening myself until I see my Dr. I refuse to be walking stupid and tired all of the time! Some people this may work for, but not me.	F	39	2 months		7/20/2009 Email
5	Trigeminal Neuralgia	I take it with food, if not a meal time it goes down well with half a banana and causes no nausea. When I have to increase the dose, to 200mg three times a day, I get some vision effect, so cannot drive; I sleep longer of a night and achieve less thru the day...	I have learnt to 'go with the flow' when medicated; its better than the awful pain. It comes back every year about April so I go on 100mg a day, then it gets worse as the weather gets colder for winter. Its at its worse now July. and when Spring/Summer comes it disappears again, so I can reduce the Tegretol until I am taking none Sep/Oct. I was in NZ July 2008 and suffered badly in Christchurch where it was snowing, even 1200mg a day did not help much and I got Lupus on such a high dose... so slowly went back to 200mg when I came home, where it settled down as we had a mild winter... I hope it just goes away one day like it came... wish I knew what causes it though..	F	62	7 years		7/4/2009 Email
4	Seizures	memory loss, cant remember names of people that i know and see everyday, short term memory problems, also sleepiness, headaches, tired all the time, no libido, no appetite, stomach aches.	even tho this med has given me issues it has saved me from having sz	F	30	3 years		6/30/2009
2	Epilepsy	Always being in a "fog", slows me down, memory loss, decline in motivation, sensitive to the sun, I'm also concerned about the long term damage to my liver.	I have tonic-clonic seizures. Side effects in part cost me my marriage. It does control seizures, only have 3 or 4 a year with it. But than so does pot for me, have never had a seizure while smoking. Luckily I live in WA and can get medicinal marijuana, just found the right doctor. The side effects of pot aren't as severe as Tegretol for me. Going to start weening myself off of the Tegretol, I can't wait to have the old me back!	M	29	8 years		6/20/2009
4	Epilepsy	Exhaustion varies depending on amount of sleep, twitching mainly in hands, double vision, dizziness	I am 34 and been on tegretol since 12. At 26, I went from 800 mg to 1400mg/day. I also take Tegretol XR. For the most part, my seizures have subsided. But, I will still have seizures if I let myself get too tired. Since I've taken more tegretol, I have double vision/dizziness every once in awhile which is very hard because I'm a teacher and has happened then. My hands twitch also. Tegretol has saved my life, in my opinion. I would have grand mal seizures regulary if I didn't take as much as I do. But, there are definitely instances where I'm so tired I could scream and wish I didn't take this drug...like tonight!	F	34	22 years		6/13/2009 Email
4	epilepsy	memory loss,always tired,confusion,loss of words	200mgx3	M	45	6 months		6/3/2009
2	Trigeminal Neuralgia	Headaches, dizziness, sluggishness, hearing issues (anything I heard sounded lower than it actually is)	I stopped taking this and started Trileptal instead. The hearing issue was to the point where I would never take Tegretol again! I have perfect pitch and I know what key a song is in after I hear it once. If I hear a song again (or even see a movie for a second time) and it doesn't match up with the original way I heard it, it drives me crazy. I couldn't take that anymore.	F	29	1 months		6/2/2009
3	lesion/tumor in spinal cord c7t1	want to close eyes, dont want to do much but still do, groggy	i have a lesion/tumor in cord, can not be operated on, been to many specialists. after trying nuraton(spelled wrong), nuraton was very bad, passing out cant drive cant walk memory very bad. when started TEGRETOL pain was less and i was able to function and go back to work. i take 6 pills a day at 200 each. still pain but ok to function. i dont know where i would be if i didnt have tegretol because nothing else worked. im in basically 24/7 pain.tried coming off tegretol thought i was doing ok, only to find out it reminded my how much pain i was in without it. IF ANYONE HAS THIS SAME KIND OF LESION/TUMOR THAT DOCTORS WONT EVEN GO NEAR LET ME KNOW IF THERES ANY HOPE	F	44	1 years		6/1/2009
4	TN	Spacey,found it hard to find the right words for things. Sleepiness, but this cleared up after a couple of weeks.	The benefits outweighed the pain by a mile. Couldn't have stood the pain without this medication.	M	56	6 months		5/29/2009
3	bipolar disorder	slight 'drugged' feeling (went away within a week), sleepy, major headache if i didnt take it as soon as i woke up	this med is ok. I feel a little better, not as many outbursts of anger. I am on lamictal klonopin and pristiq. But the anger is still present maybe i just need therapy lol! But def be aware of all sideaffects and dont be afraid to ask any and every question u have! Ur a consumer not a guine pig!	F	24	3 weeks		5/26/2009
2	slight brain shape change after bra	involuntary leg twitching, sporadic arm achiness		F	55	9 years		5/15/2009
4	epilepsy	nausea, blurred vision, headache,lack of sleep and nervousness	I have been taking tegretol since 1976. When I started taking tegretol it was still in the experimental stages and had to get blood test weekly. That was painful. I took it along with phenobarbital for 18 years. They were the only 2 drugs that could control my seizures. I was having seizures every day until I started tegretol. Now I take tegretol only but I take 1000mg daily. I was taking 1400mg daily. I can say the doctors were honest enough to tell me the side effects and let me know how the drug would cause birth defects if I got pregnant. I have now taken tegretol for 32 years and only occasional have seizures. I also had a doctor tell me that epilepsy was a disease that couldn't be cured but could be controlled so be weary of doctors that tell you that epilepsy is curable. I have been told that if I start having seizure again that there are too many good medicines that have the 10th of the side effects that tegretol does to stay on it but for now it is	F	47	32 years		3/9/2009 Email
5	Bipolar II	Little nausea every now and then but nothing else.	I love this drug. I finally feel like a human being after 42 years of no mediation. I can think clear and my emotions seem to be in order.	F	42	4 months		2/23/2009
4	Seizures	Muscle Twitching Headaches Nausea Faint like feeling Foam like taste in my mouth Shaky Hallucinations Stomache Ache	I think this medicine is good but, if not taken as prescribed, it can reverse it's treatment. Sometimes I wonder why a drug like this would be prescribed especially when most users are complaining. I am already an angry person, but my teacher said I acted like a BITCH!!!!!!!! She was right.If you have any questions email me.After experiencing Seizures I want to be a spokesperson for the epilepsy foundation, as well as be a successful singer.	M	17	2 years		2/3/2009 Email
4	Epilepsy	my sister went on Tegretol when she first had a seizure at the age of 9. Immediately, her teachers noticed she was less inquisitive and curious, less talkative, and disinterested in class. She was the top student in every grade from preschool until she graduated high school,superb in her violin, piano and extracurricular activities. during her college years she experienced some weight gain, but lost it with exercise and diet.She went to a Top ivy league school, and was the best at everything she did. She did it all despite being on this medication. She was always drowsy but she has never made it an excuse.	Mind over matter has made my sister a hero to me, and for all the parents that have children that are diagnosed, please don't acknowledge the illness as a detriment. I attribute my sister's success and happiness in life to her not allowing epilepsy to be an excuse. please contact me if you need any more advice or have any questions. thanks	F	24	16 years		2/3/2009 Email
4	Trigeminal Neuralgia	extreme fatigue, bouts of depression, severe joint pain, nausea (not always), loss of words, memory loss, feeling foggy	I am taking it with a combo of Neurontin and the Tegretol has kept me pain free for the last 3 weeks. However, I would like to go to oxcarbamazepine as the side effects are much fewer.	F	26	2 months		1/16/2009
4	Trigeminal Neuralgia	Memory loss, searching for words, erectile dysfunction		M	49	365 days		1/15/2009
5	Trigeminal Neuragia	I just started on Tegretol (100 mg) about 10 days ago. I am so glad there is a med out there that can control my bouts of pain. My pain would come in the middle of the night (mostly) ... couldn't take it and did not realize that there was a "condition" out there called Trigeminal Neuragia. The pain became increasingly worse over time and finally I saw a physician regarding it. My first side effects from Tegretol were slight nausia, and severe headache. Both passed. Did not experience the "tiredness" as noted with other individuals. I do notice that this med does not work as well for me when I am "stressed".	I will continue taking this med and probably increase dose if my pain increases with time. Still too soon to tell.	F	50	10 days		1/6/2009
4	Trigeminal Neuralgia	Extreme Exhaustion when not active, diarreha, word-loss.	I am on 600mg of Tegretol XR per day and find it works well in combating the shocking TN pain jolts though there is still lingering, achy pain. I take in combination with Neurontin which alone didn't combat the pain. I find Tegretol effective but the exhaustion is comedic as I can fall asleep the minute I sit down.	M	35	6 months		11/7/2008
4	Epilepsy. simple partial & Migraine	Extreme tiredness, sleepiness at unusal times, forget-fullness, drop in libido, slight taste & smell	Works brilliantly for me.i persisted with the med while talking with neuro to find a safe dose to cover the seizures and have noticed an improvement in all of the listed side effects. either that, or i am so used to life now with teg!! it was either take the drug or hand over my drivers license then and there. i was diagnosed with ep at age 29- with 5 seiz in one day, and was very worried about taking a daily drug for the rest of my life. i now have complete seizure control. i have noticed a positive improvement in the severity and frequency of my hormonal migraines too. Overall, side effects worth it to have my life as i knew it.	F	35	6 years		10/24/2008
5	Seizures	Depression, tired, exhausted, joint and muscle pain, light headedness, Sensitivity to sun, lethargic, insomnia, unclear thoughts, memory loss, like living in a fog! And the list goes on and on!	i rated it a 5 cuz it does work for stopping seizures , but I often wonder if the side effects are worse than actually having a seizue! I would probably prefer the seizure if I did not live with this constant fear of them killing me! I thought I was the only one suffering from all these side effects til I stumbled onto this site! Hearing you alls stories made me feel so bad for ya til I realized "hey thats me there talking about"! I have read alot of your stories and i am trying to figure out how you all hold down a job! I would really like to work but it seems between the seizures and the side effects I cant! Not to mention the embarrassment that comes along with having seizures! And the major decrease in sex drive...or anything that requires movement...or motivation...LOL This med does work for seizures but with all the side effects I think it should be outlawed! No way a person should be forced to try to live like this! This is not a life it is just existing!!!!I have been	M	27	15 years		10/22/2008 Email
1	peripheral neuropathy	severe muscle and joint pain. neuropathy increased. loss of balance. nausea. weakness and fatigue.	started with a small dose as I take high dose of Gabapentin. I felt terrible and could not believe the pain, particularly in the areas where I suffer neuropathy most ( lower limbs) the pain comtinued for days after stopping. Awful.	F	60	4 days		10/20/2008
1	bi[polar	Extreme unrelenting fatigue. I have begun to think that I had chronic fatigue syndrome. I really think it is this drug. I take the ER brand - Equetro.	Will not use this drug anymore. I cannot afford to be a walking zombie and to sleep all day	M	48	3 years		10/18/2008
4	Because of pregnancy/nursing	I honestly only noticed three annoying side effects...cannot remember words, and have difficulty processing information, and my libido is non-responsive. Other than that, I seem to tolerate it well.	I am taking this medicine because I wanted to nurse my son. He is almost 5 months now and I am concerned about what this medication might be doing to him. I will probably stop nursing and switch back to Lamictal.	F	28	9 months		10/14/2008 Email
3	Facial nerve pain, Lt side "shock"	I have just begun my first week of tegretol and I just want to sleep. I also take 300mg lamictal, increasing to 400 mg in 2 weeks. I am on 200mg daily now, increasing to 200mg twice a day in another week.	I have great aprehension about this medication considering how stinking tired it's making me. I take it now when I get home from work (4pm), and eat around 6:15. I have nausea also, but just figured out that it must be taken with food. No thanks to the pharmacist. I fear that when I take it in the morning and late afternoon, that I will be sluggish, lathargic and unable to perform at work. I work in an operating room and cannot afford to not be on my game. Will these side effects go away eventually or does someone have a suggestion as to when I should take the meds as to not feel the wrath at work. I already have an FMLA in place, but cannot afford to take tons of time off. The combo of the tegretol and lamictal seem to be helping with the nerve pain and shocks, but are the side effects worth the help??? I don't know the answer to that yet. Any suggestions would be helpful!!	M	42	6 days		10/7/2008 Email
2	partial seizures?	fatigue, memory loss, particularly with short-term, loss of libido, confusion, lack of motivation, problems with word-retrival, loss of concentration, and poor organizational skills. Basically, feel like a stupid, walking zombie that has no feelings and can sleep at the drop of a hat.	As I have not been conclusively diagnosed with epilepsy, I feel I have been caught in a whirlwind of a system, which has made it difficult to maintain my job. I'm caught in the middle, where I need to accommodate the side effects of Tegretol, or my driving privleges will be revoked once again, while trying a new medication. This is a scary proposition to me, because it tells me how powerful this drug is. I'm glad it helps others, but not for me. Sorry to vent.	F	54	1 years		9/12/2008 Email
3	seizures	dizziness,trembling,aggression (she is only 1 so it could be terrible two's?)	the side effects are frightning, we are weaning her off but scared of those side effects too. Have any other parents had babies\toddlers on this medication?	F	1	2 months		9/1/2008 Email
1	suspected epilepsy	Tegretol causes depletion of sodium (this can be sudden), Vitamin D, calcium, folic acid and biotin. Sudden sodium depletion can lead to confusion, disorientation, weakness and be mistaken for a psychiatric condition, with horrific consequences. Vitamin D depletion mimics many serious physical conditions like neuropathy, heart arrhythmias, loss of hearing, weakened bones and so forth. I experienced all of this. I kept being put in seclusion rooms in mental hospitals when I was severely sodium depleted and could have died. Be careful with this one. I had to go off of it incredibly slowly, as faster withdrawal leads to talkitiveness that can be mistaken for mania.	This drug ruined my career as a psychologist until recently and otherwise seriously limited my life for 20 years. I know others who have been through this as well. It causes symptoms similar to bipolar disorder when withdrawn, "proving" that a person is mentally ill and needs tegretol, like a vicious circle. I had to get off of it to have a clear enough head to find out what had caused all of this. With a Ph.D., I could save myself. Without that education, I might still be going in and out of hospitals.	F	63	20 years		8/19/2008 Email
5	seizure disorder	tired, joint pain, but not too bad at all, hunger increased as well.	I have not had a seizure while taking the medication 200MG 4x daily. I did stop for one day as I was going to be drinking and I didn't want to mix. Two drinks and I was throwing up additionally I had a grand mal at night...not worth stopping. Really stupid on my part. One other thing...I am a writer and have had great difficulty with spelling and hitting keys on my computer since on med.	F	33	4 months		8/15/2008
5	TLE & mood swings	Took Tegretol for 15 years and it was a total godsend. Very few side effects but now unfortunately I have to stop Tegretol as it metabolises in the same way as the only two HIV salvage drugs left open to me. Tried Trileptal but bad reaction.		M	56	15 years		7/29/2008
5	bipolar/chronic pain (fibromyalgia?	drowsiness, weight gain	I am on 1000mg, I take it all at night and it helps me sleep. While on it I have been able to hold down full time stressful job and raise a child (I am single parent.) If I run out or miss a few days of meds, chronic pain comes back like I have very bad flu symptoms. This has been a lifesaver literally. I have not been hospitalized for psychiatric reasons since on it. Only downfall is the weight gain... about 80 in the last 10 years.	F	38	10 years		7/19/2008
4	Bipola	Lack of Appetite (dream come true as my weight has fluctuated for years) , Sleepy	Hopefully this will cure my Bipola and Binge Eating Disorder	M	26	2 months		7/1/2008 Email
4	Seizures	Drowsiness, fatigue, joint pain	Very few side effects compared to other antiepileptic drugs and it controlled my seizures, it had be to increased over time though because it stop working	F	35	2 years		6/16/2008
5	seizures, bipolar disorder	I remember feeling dizzy and woozy when I first started taking it for a few days. My doc described the feeling as being like a "drunken sailor". He was right. Since then , no side effects. Just necessary to get bloodwork every three months to make sure it doesn't screw up your liver.		M	13	14 years		6/12/2008 Email
1	brain surgery	weight gain, high cholesterol, memory loss, vision blurriness, diarhea, extreme fatigue, joint pain, lethargic, extreme rash when exposed to sun	This is an awful drug. I hate it. I feel like my life has passed me by. My dose has been 1000mg/day. My doc can't remember why my dosage is so high I'm dosing off by 100mg a month.	F	44	4 years		6/12/2008
3	trigeminal neuralgia/mood swings	whilst on carbamazepine: lack of energy/motivation/talkativeness, bad circulation, depression, memory loss(short term/long term) whilst attempting to come off it: confusion, slurred speech, depression, restlessness/agitation, short term memory loss(a lot worse than before), circulation seems worse than whilst on the tablets, head shocks come back almost straight away but more frequent	I was put on tegretol to ease the shocks in my head(trigeminal neuralgia) and also to control the mood swings that came with it. The first 2/3 weeks were difficult, I had no energy and felt zoned out. The medication made me feel boring, as I couldn't think straight and it calmed me down so much I felt I was almost a mute. In the mornings I'd wake up to a head shock(which had never happened so frequently before)and confusion. My circulation was a problem at the start but I guess that turned into something I could ignore/get used to. I couldn't get used to the memory loss though, I still can't, its frustrating. It might sound silly but I feel like I don't have real thoughts anymore, they're tucked away somewhere in the back of my head and I can't get to them. I have tried coming off tegretol, the proper way and my way. Lowering my dosage left me feeling no different. Since then for the past few weeks I have been trying to drastically stop the medication. I went two weeks without any tegr	F	21	6 months		5/11/2008
3	epilepsy	i don't remember much, i don't want to do anything. i can't poop.	i've been on this for a good solid decade. it helps stop my convulsions, but i take it with dilantin, so i think the combination makes me extra stupid. i want to get off, but at the same time i don't want to flop around on the floor at dunkin donuts in union, nj.	M	27	11 years		5/10/2008
5	epilepsy/ seizures	Cold sweats, memory loss, hair loss.	Terrible drug for me. I was diagnosed as an epileptic around 1988. The best drug at the time seemed to be tegretol. I was on it for roughly 11 years. While I was taking it, it always seemed to keep me on the "edge" of having a seizure. It tempered them at best. I'm one of the lucky few who get an "aura" or warning when one is coming, rather than just instantly falling to the floor. Around 1999, my neurologist suggested trying Lamictal. It was a godsend. I haven't had a single seizure since I've been using the drugs, nor have I noticed any side effects.	M	41	9 years		4/17/2008
3	epilepsy	memory loss, headaches	I have read remarks on Tegretol and every one says they have memory loss but the doctors keep saying No! When are they going to listen to the people how take it, proof is in the pudding I would say. Maybe they should take the stuff and then see what it does to them!!! Thanks for reading :)	F	41	15 years		4/12/2008
5	petit mal seizures	About once every 10-14 days I suffer from numb mouth,an unsteady gait,feeling 'spaced out'and slurring my speech.I also get twitchy fingers.	I am on 600mg tegretol retard (to try and alleviate the side effects)twice daily. My epilepsy came back after a period of 2 years without medication and I am currently unable to drive until I have been seizure free for a year.I thought it was just me that had problems with memory,both short term and long term!It is reassuring to know that I am not alone. I am reluctant to stop the tegretol as I haven't been driving for almost a year already and I still have 9 months to go, it took ages to get under control. I haven't discussed the fact that I am still having side effects although I could go on Kepra(?)Changing tablets could spark the epilepsy off again and that's another year without independence!I guess I'll have to stick with it.	F	40	15 months		4/11/2008 Email
4		I Took it for epilepsy (petimal seisures)for 7 years from age 7 - 14. Though, experienced constant fatigue and lack of interest in activities. This ended shortly after stoping dosage. School grades immediatly improved considerably and my interest in activiteis and learning was significantly increased afterwards. However, still continued to experience occasional bouts of disinterest and fatigue, though unsure if this was a residual effect from taking such high dosages at a young age for so long durring key developmental years.		F	26	7 years		4/8/2008
4	bipolar	enlarged thyroid	I take Equetro. great for mixed states, few side effects	F	53	2 months		3/27/2008
4	Epilepsy	memory loss, some fatigue, no other symptoms	I have been on Tegretol since I was 12 and am now 33 years old. Whilst early on I had no visible side effects at all, as I get older I am having a marked increase in Memory loss. I like others remember little of my childhood and my short term memory stinks! Very frustrating for myself and those that I live with. I have been off work for a couple of years and it seems to have gotten worse since Ive stopped using my brain for work - type functions so Im hoping it will improve when I go back. The drug gives mee too much peace of mind to consider ditching it however Im pleased Im not the only one that has the memory loss symptom	F	33	21 years		3/20/2008 Email
3	Bipolar II	Dry itchy skin patches on upper arms & thighs.Increased appetite & weight gain. I am only taking 1/2 of the prescribed dose due to the itchiness (should be taking 200 mg 2 x a day - I take 1 x a day).	I was initially diagnosed as ADD, but ADD drug, Vyvanse, intensified my symptoms which led to a bipolar II diagnosis. Feel better, but not "normal". Have noticed I do not clench my jaw, grind my teeth, talk aloud to myself, or sing made up "rhymed" tunes as I was doing. Seem less moody & depressed. Difficulties w/memory,time management, sleep problems continue. Fired from job for repeated tardiness just as I began on Tegretol -I seemed driven to keep going & going until 2 or 3 am then collapsed into sleep but had difficulty waking & organizing myself to get to work on time. Not sure if I feel better due to the drug, or because I'm not working & am getting more sleep. I am very worried about my financial state & seeking a job-expect it will be difficult to find decent paying work after having been fired for tardiness i3 times in a row. I've always struggled w/mornings, but managed work until the last few years. My problem, bipolar, ADD or whateve	F	52	45 days		3/18/2008
5	epilepsy	drowsy		F	40	31 years		3/4/2008
3	bipolar rapid cycling	some weight gain (15lbs) complete loss of libido,(horrible) not wholly successful control of mood swings, irritability, itchy skin	tried everything else eg lithium, depakote etc- this is least worst option but does not fully control mood swings, take 400mg twice a day. Considering moving onto Lamotrigine but have been advised will need Seroquel as well as an anti-manic but which has awful side effects, but do really want to get some libido back, any feedback on this appreciated	F	46	18 days		2/23/2008 Email
2	Bipolar I	lots of pain in feet, bumped into everything.	I could only stand the foot pain for about 2 weeks. My Psych switched me to Trileptal and as long as I don't go above 300mg I don't have any pain.	F	34	2 weeks		2/22/2008
3	Bipolar	In the first few months I developed hives,which has stopped. Ongoing sleep disturbances,dizziness,mental confusion and 'foggyness',memory loss,huge appetite and weight gain.Fell pregnant while using oral contraceptives,then miscarried,was unaware of reduced 'protection'.Headaches,concentration loss and struggle to find the correct words.	After many years of battling to find the right chemical combo, the combination of Tegretol,Aterax and Tripelene works well for me however the side-effects of Tegretol are a problem.I am looking for an alternative.	F	40	5 months		2/13/2008
1	Partial seizures	Abdominal pain with pain score of 8 out of 10. Non-blanching rash for 24 hrs. Fever of 39.5c which lasted 5 days, followed by an allergic rash which lasted two more weeks. Very hot, very poorly,very ill.....don't go there!	Controlled seizures well, but felt very poorly from day one, but being a FAVOURITE drug, had to convince clinicians that I wasn't just moaning!!!!!!! Now on lowest dose Topamax as monotherapy-good result after 3 mths	F	50	4 weeks		1/7/2008 Email
3	seizure	Weight Gain, Difficulty processing information, inability to recall information, a little more emotional and easily "set off"	I have not had anymore seizures which is great but I do struggle with the side effects especially it's inteference with my sports. I hoping to look at something different in the next month or two.	F	31	10 months		12/31/2007
4	Epilepsy	Double vision if doses taken early/close together (400mg x 3 times per day). Half way through second pregnancy doctor finally told me tegretol affects the 'contraceptive pill' (reasons for my 2 unplanned pregnancies). I have the doses increased x 4 times during pregnancy to stop fits as they increase during the 9 months. Used to have temporal lobe seizures only prior to pregnacies and full on fits when pregnant. Slight memory loss but could be from getting older and having two kids around as distractions!	No weight gain due to keeping up with regular exercise/healthy lifestyle. Would not be able to drive without this medication, have normal life with tegretol. I can tell someone before I am having a fit, de-javu feeling, but dont know if it will be minor with my words mixed up or major and full seizure on the floor. No one else in my family has epilepsy. Wrote off my car when 3 weeks pregnant with my 2nd son, so always take medication on time and now get deprolovera injections 3 monthly to prevent getting pregnant again. (The contraceptive pill doesn't work).	F	32	17 years		12/10/2007 Email
1	seizures	To be frank, it made me stupid... The memory loss affects your brain fucntions to a grand degree. I could barely count it was so bad. Needless to say, I didn't stay on it long.		F	25	2 days		12/5/2007
2	seizures	forgetfulness(very irritating), drowsiness, fatigued, irregular sleep patterns, a lack of "drive", joint pains.	I took tegretol for 8 years from the ages of 4 to 12 for seizures & it seemed to work & I didn't need it for another 20 years until earlier this year when I started experiencing unexplainable dizziness, numbness & tingling in my left hand & foot & "out of body" feelings. The neurologist was totally unsure what had caused these symptoms even with the aid of an M.R.I. & E.E.G. & suggested that I go back onto tegretol as it had worked in the past.Seven months later I would really like to find a replacement medication or stop tegretol regardless as the side effects are affecting my quality of life considerably.	M	33	7 months		11/8/2007
1	Bipolar II	Vision disturbances (eyes feel like they are being shaken), unable to drive, unable to walk straight. Hearing music / sound at a lower key than it really is...STRANGE! Increase in appetite. Increased need for sleep. Constant state of sleepiness, unable to function. Don't remember much of the past week.	I was at 600 mg for three days, then reduced to 400 to reduce side effects and slowly bring up levels. It's been a week and a half now and I am discontinuing this drug. The most disturbing side effects were hearing sounds in a lower key, almost like a record player playing an album too slow, and also the feeling like my eyes were being shaken. Taking at the same time as lamictal 400 reduced to 200, cipralex 10 mg, meridia 15 mg, synthroid.	F	33	2 weeks		10/27/2007
3	Epilepsy	Drowsiness. some coordination issues(Hand-eye) and memory problems. I have had problems focusing on work. These issues do not appear to be going away.	It has kept me seizure free for 5 years, but the side effects are hard to deal with.	M	41	5 days		10/3/2007 Email
3		Double Vision, Memory Loss - both short and long term, insomnia, problems getting the right words out, difficulty concentrating.	This drug has had some positive effects on my Bi-Polar Dissorder but the side-effects have got gradually worse to the point where they are now causing me mental anguish.	M	47	3 years		9/8/2007
2	Bi-Polar Disorder	Skin feeling itchy (but no rash), music and ringtones sound lower in key than they really are. Nausea, dizziness, weight gain.		F	31	8 days		8/30/2007
5	seizure disorder	Weight gain; feeling "foggy" -- used to play Trivial Pursuit and remembered all the obscure trivia, but after starting Tegretol I know that I know the information, just can't call it up out of the "file cabinet."	Considering that all medications cause some sort of side-effects, some worse than others, Tegretol has made it possible for me to drive, hold down a full-time job, raise a child -- in other words, have a productive life, so much so that the only time I think about having a seizure disorder is when I have to take a dose, go the doctor for a refill, or deal with the local DMV to keep my driver's license. The rest of the time I can just think of my seizure disorder as a "nuisance" that I have to deal with, not something that I have allowed to ruin my life.	F	56	20 years		8/28/2007
4	Bi-polar	water retention, extremely sore breasts		F	43	6 months		8/28/2007
4	Partical Complex Seizures	Double Vision when I took my dose too early, weight gain, about 10 lbs. some fatigue.	Skeptial at first taking lower Dose. Now taking 1000 mg 2 times a day. The higher dose has controlled my seizures now for 4 months. This is the longest time I have gone seizure free after trying a long list of drugs. Dilantin, Keppra, Lamictail... I am now begining to feel my seizures are controlled.	M	37	10 months		8/24/2007
4	Left Temp. Lobe Epilepsy	I've noticed some disturbance of memory; once in a while, when taking it on an empty stomach there is transient nausea and/or stomach pain. If I mess up & take doses too close I might get double vision for about 20 minutes or so. I do have joint pain, but that might be age......	I take 1100 mg of this drug a day--quite a large dose. I also took it through 2 pregnancies (both with normal outcomes--kids are now in H.S. & College), and nursed both kids. For me, it's been a wonder drug. It allows me to live a normal life.	F	49	20 years		8/7/2007
3	bipolar	sleepiness, tingling fingers and tongue, memory problems, feel drugged on higher doses, acne	PROACTIVE HELPS THE ACNE- everyone should know this. my doctor didnt know about this side effect, i learned anti convulsants can have this effect from the proactive packaging. i just hate how little the doctors know about side effects!	F	36	4 years		7/21/2007
5	trigeminal neuralgia	I started taking this twelve years ago and go up and down as needed. Generally, I stay on about 300 maintenance. It calms me and I feel pretty good on it. I actually like myself better on it than off. I do feel it interferes with my drive. I'm not as organized while on it. I also take lamictol 300 and the combination for the pain is great. Sometimes, I have to go up to 1000 mlg of tegretol when the pain is horrendous, but am under control with the pain with tegretol. I would say it has been a complete life saver for me. I would have gone beserk with pain if I hadn't had this drug.Sometimes trigeminal neuralgia can be incapacitating, and I find that tegretol works immediately for the pain. It also help me with mood swings too. Side affects; sexual, for sure. weight gain (just a bit; slows the metabolism down) that's about it. I have lost all the enamel on the insides of my teeth, but don't know if it's related. The dentists can't figure it out.	I think the most important thing for t.n. patients is to be on the RIGHT DOSE, with the right combination of other medicines. I think that is the key. When I've been at 1000 mlg for pain at times, I am like a zombie; extremely tired, no drive to do anything. Gladly, I don't have to be at that high dose for long; maybe a month at the most. I have an outstanding neurologist who moniters me regularly.	F	55	13 years		7/19/2007 Email
5	mood disorder	light headedness, weight gain, rashes, increased liver function results, slight fever	The side effects have been drastically outweighed by the improvement of my moods. After suffering severe depression for 18 months with no improvement after using several anti-depressants, Tegretol has turned my life around. I am being constantly monitored for any further side effects, but if they don't get worse, I will be staying on Tegretol	F	46	3 months		7/18/2007
4	bi polar	stomach ache anytime I eat leading to severe diarhhea and further weight loss.High blood pressure and sleepiness during the day.	I have only been on it 3 weeks and have lost 9 pounds. I had gained them from taking Wellbutrin. I can live with weight loss. The daytime sleepiness is going away now. I am monitoring my blood pressure. These are small prices to pay for the benefit. However, I have not been on it long.	F	49	3 weeks		7/4/2007 Email
5	glossopharyngeal neuralgia	I was really sleepy for the first few weeks but the effect wore off so that I didn't know I was taking it. No side effects after the first few weeks.	This was a miracle drug for me. I know it can be a dangerous drug but my blood levels were monitored monthly and I remained stable. I now -- over 20 years later -- have a mild osteopenia. I don't know if that's from the Tegretol or whether I would have had it anyway. I was able to gradually wean myself off of the Tegretol after taking it for 10+ years. Have been off of it and symptom free for 7 or 8 years now.	F	58	10 years		5/21/2007
3	bipolar	mainly stomach/gastric distress. took prevacid, nexxium etc but didn't really help. I could only manage 200mg/twice day though I was supposed to work up to twice that amount in order to achieve the lowest therapeutic level	in spite of the side effects, tegretol beats lithium hands down. i don't understand the arbitrary therapeutic level.	F	53	6 months		5/21/2007 Email
1	Seizure Disorder	I had my first seizure when I was 12 yrs old and I was put on Tegretol. I was not diagnosed with epilepsy but seemed to have seizures around the time of my period. Tegretol, overall, did not work for me. The longest I was seizure free on this medication was three months. The side effects included massive mood swings, nausea (especially in the morning), memory loss, and trouble reading and concentrating. I didn't know that some of these effects were the result of this drug for I myself was too young to understand. I currently have very little long term memory. I seem to have lost many memories from childhood that seem to many to deem from age and time. This is my longest lasting side effect of this medication. It is very frustrating to live with this at times especially when your loved ones share with you their childhood memories. I do not recomend this medication for children.	Following this drug, I was put on Depakote. This drug has minimal side effects only if given low doses. I have been seizure free for a long time now. I am happy and taking care of myself mentally, emotionally, and physically. For those prone for seizures, I have found that stress control and taking care of one's body is the most important way to remain seizure free with low doses of medication. I hope this helps others like everyone's comments have helped me. Thank you.	F	22	9 months		5/3/2007 Email
4	bipolar	extreme fatigue that has drastically reduced after 2 weeks... some weight gain... very few noticeable side effects	I struggle to say anything negative about tegretol. Tegretol is a dream next to trileptal.	F	35	7 weeks		5/2/2007
1	Bipolar Disorder	below (same person)	i was the last person to post.... I wanted to mention that i was on topomax (which was perfect- for me) but stopped taking it because it was too expensive (116 dollars a month) and i am not qualified to get insurance, so they tried me on tegretol saying it was simmilar and cheaper. Well, I am going to the doctor tommorow and asking to get back on topomax regardless of the cost. I learned my lesson, my health is too important to bargain with. It doesn't even treat my bipolar disorder, it made it worse and added to my OCD and made me sick. I have been severely depressed/manic for the last month of being on it and have felt suicidal. My mother was bipolar and killed herself, so i know the importance of meds...I will NEVER take this again! But maybe it is good for you...everyone is different- remember that when reading these comments. Done.	F	20	2 months		4/29/2007
1	Bipolar Disorder	Increased my OCD symptoms, depression, rashes, easy bruising, weakness, faint feeling, nausia, numb mouth, tingling numbness in my fingers and feet (at times painful). The first two weeks i heard everything (mostly music) in a lower key than it actually is.		F	20	2 months		4/29/2007
5	Seizures	None noticed, I was just so pleased that the seizures stopped.	3-4 months required to get the correct dose to stop the seizures, once that was correct the seizures have stopped completely. No way would I stop or change medications.	M	42	5 years		4/26/2007
3	I had my first documented seizure	short-term memory loss,dizziness,aching especially on the upper left side, hot and then cold,nervousness. My enthusiasm for teaching has been reduced. My anti-depressant was also reduced which may be contributing to the side effects. It is not listed as a drug interaction problem with tegretol so I am questioning my doctors as to why it was reduced. I am worried enough without having to deal with withdrawl symptoms.		F	53	2 weeks		4/17/2007
5	seizures	The only one I have is some difficulty concentrating/remembering which I suppose is from the drug.	Has kept me seizure-free for more than 15 years. I have lived a very "normal" life, gave birth to three beautiful daughters while on the med, and maintain a high-stress job. It has worked well for me!	F	52	25 years		4/6/2007
4	temperal lobe seizures	Took this drug for many years at a steady dose without any side effects that I remember and it contolled most of my symptoms. But I developed HYPONATREMIA and had to be taken off it.	I had normal blood levels for many years and then there began a slow decline in my sodium levels. It took many reports of "low sodium" in my periodic bloodwork before one of my doctors saw Tegretol as a possible cause. My sodium level, meanwhile, had dropped dangerously low. This is not a complaint against the doctors. It is a complaint that "hyponatremia" should have been listed as a potential side-effect in the literature, so that a doctor could pinpoint the cause much sooner.	F	47	13 years		3/31/2007
1	chronic pain	it is making me feel manic, like if i had 12 cups of coffee...not helping with pain, causing nervousness and nausea. Doctor wants me to up dose for pain control. I am done with it.		F	31	3 weeks		2/1/2007 Email
5	To control my seizures	I have quite a number of side effects including, Hair loss, Bone problems, Heart palpatations and short term memory loss. Yes the list is long, but i cant do without tegretol.	The only reason i am taking tegretol still is the fact that it has been the only succesful drug that has controlled my seizures. I am also taking Keppra as well to help along side tefretol, but it is always tegretol that i come back to. Plus it has allowed me to drive now :)	M	33	25 years		1/27/2007
1	Seizure disorder s/p encephalopathy	Severe hyponatremia, 120	I will not take this medicine again	F	52	2 days		1/24/2007
1	``yelling and screaming seizures``	i was on a very small dosage when i was 8-12 years old. i was seeing double, dizzy, vomiting, and eventually overdosed. my doctor kept ùping the dose, thinking that the effects were `breakthrough seizures`. i now have a very rare condition, where my clavicals cut off my windpipe when i cross my arms. i believe this may be the effect of taking so much of this drug when i was young. it`s only a speculation, but i wouldn`t risk it.		F	24	4 years		1/10/2007
5	Bipolar II	Some fatigue which resolved after 2 weeks.	Has stabilised my mood.	F	28	4 months		1/9/2007
4	Bipolar Disorder	dizziness, inability to find correct words, sleepy, kind of like a dazed state but all side effects went away after a week	Ive tried lithium and lamictal, and neither helped me. For the first time, I feel like Im beginning to get back to normal. Im not even at the right dose yet (titrating up) but I can feel a major difference in my mania.	F	34	21 days		1/4/2007
5	bipolar I, rapid cycling	Some fatigue, some short-term memory loss	This drug saved my life. I take 400mg twice daily and I went from regular hospitalizations to fully functioning able to hold high stress, more than full-time job. Side effects definitely worth it and am more fit and healthier than ever.	F	40	5 years		12/27/2006
4	Bipolar/OCD	I take this along with Paxil, so not sure what side effects come from what drug. But I do experience small twitches in different parts of my body, usually arms and legs. Also sleepiness and weight gain/increase in appetite	This in combination with Paxil has greatly increased the quality of my life. I feel more calm and in control. I have to start watching my food intake and try not to gain so much weight now though. I've probably gained 10-15 lbs. in a few months from my strong appetite.	F	25	6 months		12/27/2006
3	bipolar 2	tired	This medication really didn't do anything for me. It did bring my anxiety down, but I was always tired which I guess is the point on it (to keep you from becoming manic) however, I battle with lack of energy and motivation and this never made me feel energetic or wanting to go out and do things. Was on this for about 3 months and had to get blood tests regularly yet the amount in my blood never got to be the right amount which my pshychiatrist said was odd (when I got blood tests my results were extremely low even after upping the dose) so maybe that's why I didn't get good results. Am now trying Lamictal, also on Wellbutrin SR 400mg, Concerta 36mg, Klonopin 1mg when needed, Risperdal 1mg when needed	F	20	3 months		12/3/2006
4	seizures	drowsiness/fatigue, almost to the point that I cannot function during the day and restless at night mood swings, usually from being emotionless to very very angry, I now have the "I just don't care anymore" attitude/feeling (not about living but, rather the usual day to day things) memory loss - trouble concentrating, this has caused a problem in school because I don't have time to read all of my assignments 3 or 4 times, this med. makes it hard to concentrate on reading and I also process things slower "Dazed and Confused" - not the song - I often go into a daze or as I just previously mentioned, it takes me longer than average to process information and think things though	I have been trying several different meds over the years, all of which have had side effects. I started with Dilantin and found that I was allergic. Then I was on Depakote, that, along with Tegretol ER, gave me depression. Most recently I was on Keppra but, because of its short "half life" and my tendency to forget to take it, it did not stay in my system and I had seizures. So, I returned to Tegretol. It has worked well so far but, I have been having the side effects. Although, overall, I would rather have the side effects and know I will not have the seizures. I also like the Tegretol ER because if you miss a dose it still remains in your system.	M	21	2 months		11/29/2006 Email

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Average rating for drug: 3.5. This page is printer-friendly; use landscape print with background color turned on.

Key to ratings: 5-Very Satisfied: this medicine cured me or helped me a great deal. 4-Satisfied: this medicine helped. 3-Somewhat Satisfied: this medicine helped somewhat. 2-Not Satisfied: this medicine did not work to my satisfaction. 1-Dissatisfied: I would not recommend taking this medicine.

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