There are 157 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 and Dosage		Date Added
				F  M
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5	epilepsy	No side effects and very good control. Had only 7 seizures during this period and 4 were on the same day.	Was taken off Tegretol because of the damage it does to the bones.	F	70	16 years 2X D		3/26/2010 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 It causes symptoms similar to bipolar disorder when withdrawn, "proving" that a person is mentally ill and needs tegretol, like a vicious circle.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	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	trigiminal neuralgia	nausa		F	62	1 months		3/3/2003
1	unerupted shingles	I ended up in the hospital at death's door with Steven-Johnson Syndrome which is 99.99percent fatal. The prescribing Dr (?) I use that term loosely, did not have me back for follow-up.	DO NOT TAKE ON FEAR OF DEATH>	F	60	5 weeks		3/16/2001
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
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
1	bipolar disorder	hair loss mood changes tremors	hate it	F	58	6 weeks 200mg 3X D		4/2/2010
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
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
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
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	seizures	I have had no side effects with tegretol or the generic	good but had to be i ncreased to 200 3 times a day because of several breakthrough seizures	M	55	20 years 200 2X D		5/19/2010
2	slight brain shape change after bra	involuntary leg twitching, sporadic arm achiness		F	55	9 years		5/15/2009
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
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
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	Bipolar depression	constipation	My cholesterol level has gradually risen ove 3 years to 6.6	F	53	8 years		1/24/2010
4	bipolar	enlarged thyroid	I take Equetro. great for mixed states, few side effects	F	53	2 months		3/27/2008
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
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
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	Trigeminal Neuralgia	Drowsiness, some mild confusion, difficulty concentrating. All these lessened after about two weeks.	I have used Tegretol off and on for about ten years . I tried to switch to Neurontin for less side effects but found it much less effective than Tegretol. Also tried in combination. I am relatively pain free with Tegretol after spending many days with mutliple attacks of terrible pain.	M	52	10 years		3/7/2006
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
1	Seizure disorder s/p encephalopathy	Severe hyponatremia, 120	I will not take this medicine again	F	52	2 days		1/24/2007
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	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
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
5	epilepsy	no side effects	seizure free for many many years	F	49	28 years		4/26/2003
5	trigeminal neuralgia	Drowsiness first two weeks, stomach discomfort at 300 mg dose. (Take with food). No noticeable side effects now.	I suffered from excruciating trigeminal neuralgia for several years before trying Tegretol. This medication has changed my life; I can now function as an almost normal person. Before Tegretol I spent almost 3 years homebound and in bed, nauseated and vomiting from pain. If you have trigeminal neuralgia and have not had relief with Neurontin, ask your doctor about it. Now I have a life again!	F	49	15 months		11/26/2005 Email
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
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
4	Trigeminal Neuralgia	Memory loss, searching for words, erectile dysfunction		M	49	365 days		1/15/2009
3	trigeminal neuralgia/neurapathy	I'm having severe memory loss, lethargic, confusion, and joint pain. As the responder below, I also had mascular decompression 4 yrs ago for TN. Unfortunately, it made the situation worse; I now have neurpathy as well. I have no idea what I would experience without the Tegretol but I know I'm still in a lot of pain and can longer work. I'm taking 400mg a day along with Baclofen and Zanaflex; Oxycodone and Xanax for severe attacks.I am also not the person I used to be. I can no longer entertain coz I cannot carry on a sensable conversation. My memory loss from this med is extreme, especially short term.	If I go off this medication, I would. I don't know what would happen if I did. It could actually be helping more than I know. It has the loss of memory side effect that I believe needs to be addressed with the manufacturer.	F	49	2 years 400MG 2X D		5/16/2010 Email
5	bipolar S.A.D.	Hardly any. I suspect it's responsible for weight gain around my middle however, because I was off it for two months and regained a waistline - a full size smaller. Within 10 days of being back on it my waist was as big as it was before.	Take 150mg twice a day. Feel much better on 100mg twice a day but then when PMS time comes, so does ANGER, so I obviously need the extra then.	F	48	5 years		9/28/2005
4	Temp. Lobe Epilepsy-Comp. Part.	I take a huge, monster dose of this drug (4x/day) to maintain therapeutic blood levels; if I mess up the timing it can make me drowsy and a bit foggy, or at worst give me slight double vision. Once in a bue moon I get nausea if I take it on an empty stomach. I suspect it may be causing joint pain, but who can tell? I am getting older, too! [Very small prices to pay for freedom.]	This is a wonder drug. I had undiagnosed, uncontrolled complex partial seizures for 12 years before a clever MD figured the epilepsy out and immediately put me on Tegretol. Once I was put on T. it 100% controlled the seizures. I took it through 2 pregnancies (kids turned out totally OK & are grown now), and 4 unrelated surgeries. One oddity:the GENERIC VERSION DOES NOT WORK FOR ME--who is to say why? So it still costs me an arm & a leg to fill this Rx. . . .	F	48	20 years		9/17/2006
4	Cavernous Hemangioma-removed	lethargic, vertigo, memory loss	still have very small seizures	F	48	8 years		10/29/2009 Email
2		Extreme fatigue that has not gone away, dreams every night, some memory loss, some dizziness. My doctor has reduced my medication twice. That has helped, but I still can't begin to stay awake through the afternoon.	I've lost my job and don't have the sustained energy to look for or hold another one. And I have to get back to work! Each day, I do the things that I absolutely have to do...taking care of my elderly parents' finances and other needs and working around the house...and then I crash. I've only had two seizures as an adult(one 9 months ago and one 6 months ago) before taking this drug. I'm grateful that I'm not in any kind of pain, but the exhaustion is debilitating and frustrating because I just can't function for more than 4 or 5 hours at a time, and even then, I'm tired. The side effects are so much worse than the seizures themselves. And I'm only on 100mg/day now.	F	48	6 months		10/9/2006 Email
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
5	epilepsy	After taking this medicine for 18 years, it causes sporatic sodium/potassium imbalance.	It has been a great help over the years.	F	47	20 years		12/11/2004
5	bipolar II	If I don't eat during the day I get a little		M	47	5 years		4/15/2005 Email
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
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
4	Brain tumour induced seizures	tendancy to tiredness, though that may be related to other matters.	500 mg twice daily	M	47	6 years		6/28/2004
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
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
3	supraorbital neuralgia	Dizziness when upping dose for 3 to 4 days. I have gained 25 lbs over the past two years while on the drug. Tired alot. Definite memory loss.		M	47	2 years		6/17/2006 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	RDS	Cannot sleep, I don't want to eat. Pain hasn't decreased. Visual problems, and I believe hives from the medication.	I question why the medication was given for RSD.	F	47	30 days		5/8/2005
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
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
5	Bipolar - Rapid Cycling	sleepiness, some mild memory loss, some scattering of thoughts	This was a life saver for me. I went to it from Lithium and felt SO much like myself -- normal. It worked for me for almost 15 years! I took 600 mg at bedtime (this drug is very sedating, so I couldn't take it during the day). Recommend anyone try this if Lithium is not working.	F	45	15 years		8/27/2005 Email
4	trigeminal neuralgia	extreme tiredness, memory loss, vision, general feeling of being "stoned" WEIGHT GAIN	I had brain surgery for Arnold Ciari Malformation 4 yrs. ago and then developed TN, tried about 10 medicines including Tegretol until I had a vascular decompression for the TN 4/09. I know have permanent TN and have been put on a combination of carbatrol and carbmez. at the max dosage. I am not the person I used to be, but the pain is going away. I drive and work on this stuff and can't figure out how I do it. Sometimes I can't remember how I get places.	F	45	2 months 400 3X D		4/17/2010 Email
4	epilepsy	memory loss,always tired,confusion,loss of words	200mgx3	M	45	6 months		6/3/2009
3	trigeminal nueralgia	short term memory problems, sore throat, fatigue, loss of sexual drive	It has decreased the pain tremendously	F	45	2 months		2/1/2005
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
2	trigeminal neuralgia			F	44	70 days		12/4/2001
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
4	Bi-polar	water retention, extremely sore breasts		F	43	6 months		8/28/2007
4	Compulsive Exsplosive Disorder	None really. I have an arm rash right now that may be related. So memory loss and tireness	Has made me very level tempered. Not so fast to fly off the handle. As a side note, my restless leg syndron has disappeared which I didn't Tegretol was prescribed for. It was a NICE side effect.	M	43	5 months		10/6/2005
5	Epilepsy (nocturnal seizures)	At the begining I took 2 doses of 400mg, morning and evening. After nausea in the morning my doctor cut out the morning dose. For the past 10 years I have been seizure free. A positive side effect was weight loss - I had to stop drinking beer!	Never stop taking the treatment without consulting your doctor. I did once due to a misunderstanding and the result was a seizure.	M	42	11 years		1/10/2006 Email
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
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
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	epilepsy/seizures	Short term memory loss and tiredness. I have low blood pressure hence a pacemaker - heart misses beats. I have several blackouts/seizures over 2-3 days then none for another month.	Currently increasing medication from 800mg per day to 1200mg per day to see if there is any improvement.	F	42	24 days		8/17/2005 Email
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
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
5	epilepsy	drowsy		F	40	31 years		3/4/2008
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
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	trigeminal neuralgia	now after reading all of the other folk's side effects. i can definitely say, weight gain, sluggish, extreme tiredness, short ter memory loss, dry eyes, blurry vision.	I think I have had tn for about a 1 1/2 yrs. I thought at first that I was having dental issues, so after 2 root canals (I didnt need)and $3000 dollars of dental work and no relief my 3rd dentist referred me back to my pcp, who 1st started me on neurontin which didnt help at all! He then switched me to tegretol 200 mg that immediately took the pain away for about 4 dys, then I increased to 300 mg daily which also lasted about 4 dys, I now take 400 mg daily and that has taken the pain away completely for the last 30 dys. I am now experiencing dull pain but not as horrible as b4. I am hoping I wont have to increase to 500 mg as I am concerned about side effects. I am yet to c a specialist but hv an appt in July. I have now found a small skin rash but not sure if it is associated with the tegretol. I hv also noticed if I take my med every 4 hrs, 10am,2pm,6pm,10pm I hv no pain at all. I have tried diff time variations becuz my life as been consumed by this condition.I have alarms set 4 each dose. I have meds at home and I carry some with me as well. I hv missed a couple of doses and actually feel pain immediately???Odd. so I am really on track now as the pain is ridiculous. this is a terrible condition to have but am glad I am not alone!	F	40	2 months 400 mg 1X D		7/4/2010 Email
4	seizure disorder	I took this drug for 15 years, always tired, never 100% seizure free. Occasionally overdosing ending up very dizzy. Missing one the seizures would fallow.	It controlled me. The only option was to have 1/4 of my brain removed, risky but I did it. No side affects only PT memory loss Now Im a NEW MAN!! and a free one.	M	40	15 days		12/22/2004 Email
4	seizure disorder	I took this drug for 25 years, always tired, never 100% seizure free. Trying other drugs, testing new meds. Occasionally overdosing ending up very dizzy. Missing one the seizures would fallow.	It controlled me. The only option was to have 1/4 of my brain removed, risky but I did it. No side affects only PT memory loss Now Im a NEW MAN!! and a free one.	M	40	25 years		12/22/2004 Email
3	Temporal Lobe Epilepsy	I have not any issues with the Epilepsy since starting on Tegratol. Memory does seem worse than most people around me. Was diagnosed with osteoporosis a month ago despite being fit, healthy and active my whole life	Trying to get off the drug now so I can get my bones density back in order as a lot of recent research points to this being a side effect of the drug.	M	40	20 years 200mg 2X D		8/24/2010
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
4	Seizures followining shunt oper.	Marked increase in fatigue. I can sleep for 8 hours and still take a couple naps during the day. There may also be an impact on my ability to recall important facts and figures. Tried Dilantin, but found it affected my vision to the point where I couldn't function properly - I suffered eye muscle tremors.	Keeps my post operative seizures at bay so I'm willing to work around the side effects even though I find the increase in fatigue very noticable. I hope when I see my neurosurgeon in a few weeks we can determine whether the drug can be discontinued.	M	39	5 weeks		9/3/2006
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
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	bipolar II	drowsiness, short term memory loss	I've been lucky with this drug. Few side effects compared to most people and it's controlled my moods very well for 12 years now. Gave me my life back.	M	38	12 years		2/8/2005
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	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	4	could not thin k in the begining	did stableise me	M	37	2 months		11/7/2005
3	seizure disorder	Fatigue, memory loss, can't concentrate, weight gain, behavioural problems [irritability, hostility]	I take 1000mg of TEGRETOL per day [400mg in a.m., 600mg @ bedtime]. My seizures are only partially controlled with this drug. I still have partials on the average of every 2 weeks. Considering the drug has so many side-effects for me, and is only partially effective, I am only "Somewhat Satisfied" with it	M	37	5 years		6/13/2006
3	Seizures	Constant fatigue, upset stomach, hot/cold flashes	If I miss more than a couple of doses I am pretty much guaranteed to have a seizure. this drug was prescribed to me as a teenager and I am now 37 and still taking it. I don't like the side effects at all as it can impede my ability to do a lot of things but I don't like the seizures either.	M	37	20 years		10/26/2006 Email
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	Epilepsy	Initially some drowsiness and dizziness, but that is gone.		F	35	6 months		10/10/2004
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
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
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
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
2	Bipolar II Rapid-cycling	Ringing in my ears, lethargy, acne, dizziness	I take Wellbutrin XL, Trileptal and Lamictal so my side-effects might be realted to those meds being affected by the Tegretol, but I felt incredibly lethargic and hungry after starting the Tegretol. Also, I got terrible acne and developed a bad ringing in my ears which hasn't gone away a week after stopping the Tegretol.	F	35			10/30/2004
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
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
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
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
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	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
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

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Average rating for drug: 3.4. 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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