Comment from: Natie, 45-54 Female on Treatment for 10+ years (Patient) Published: January 02

I've been on Tegretol for 18 yrs. For seizures,been seizure free for that lenght of time. After reading reviews, maybe Tegretol is what causes me to be tired alot of the time. I have trouble with memory and recalling words in conversation with people.

Related Reading: tegretol | seizure

Comment from: Joe, 25-34 Female on Treatment for 10+ years (Patient) Published: July 09

I have been on tegretol for about 15 years. It has worked great for controlling my seizures (I have had no seizures while on it in 15 years). However, I am not a fan of taking any medications on a daily basis. Recently I had a dr. appointment and had to get a bone density scan because tegretol is now linked to osteoporosis (have not received my results yet). I haven't noticed any major side effects but I have seen a slight decrease in my passion/excitement/energy for things in everyday life. It also seems to have slowed my metabolism. I work out vigorously 6 days a week and eat pretty healthy as I am trying to lose about 10-15 pounds but am only losing about 1 pound per week (I am sure there are other factors that play into this but feel the tegretol plays a role as well). My personal thoughts, if you have a serious seizure disorder; take the medication it has worked great for me. If it is a mild disorder; try to find some other non-medicated remedy (this is my situation and I wish I would have found an alternative remedy to medication but I was 15 when I started and didn't know any better). I fear it is too late for me to stop now. Good luck to whomever reads this and I hope it helps!

Related Reading: tegretol | osteoporosis

Comment from: 45-54 on Treatment for less than 1 month (Patient) Published: March 07

I started Tegretol 3 weeks ago and after 5 days of increasing my dose I found relief from my pain. Today I have had some bleed through pain, but it was nothing compared to what I was going through without this drug. So far so good.

Comment from: Isabelle, 35-44 on Treatment for 10+ years (Patient) Published: October 22

I've been on Tegretol for 27 years and the only trouble I had was sensitivity to the hot sun. I was on a sweltering holiday in Tenerife and bloated up-like a blow fish all over my body in 24 hrs with a terrible thirst. After only one anti-histamine I made a full recovery in 12 hrs. Tenerife was very hot that holiday and the average British summer has never caused me any trouble. Now I just take a precautionary anti-histamine should the temp on holiday rise above 85. My GP told me this is a reaction to taking Tegretol. Overall, my Epilepsy is well controlled and I lead a wonderful and full life!

Comment from: scharri, 35-44 on Treatment for 10+ years (Patient) Published: October 16

I have not experienced any side effects that I know of and I have been on this drug for ten years.

Comment from: Marge, 75 or over on Treatment for 6 months - 1 year (Patient) Published: October 05

Until it was explained to me by a neurologist that I had to take it consistently and keep in my blood stream, did I get relief from the facial pain. I have been using it for one year and I am no longer in fear of the pain stopping me from eating, talking or having to go off to another room and cry. I would like to reduce the medication but the pain is so severe that I am unable to fuction at age 80.

Comment from: Mo, 45-54 on Treatment for less than 1 month (Patient) Published: February 10

I was on tegretol for 3 weeks for trigeminal neuralgia. It was working very well to relieve the pain. But then I developed a nasty rash, first around my knees, then up my legs, arms, neck and face. Dr. had me stop taking tegretol immediately, saying that the rash could be life-threatening. I was broken-hearted to go off tegretol because it provided the first relief from pain that I'd had in years. I'm on gabapentin now, but it just does not relieve pain well, and I'm gaining weight despite daily exercise and a lowfat diet (7 pounds in 8 weeks.)

Related Reading: trigeminal neuralgia | gabapentin

Comment from: celticmaiden, 45-54 on Treatment for 1-2 years (Patient) Published: January 06

Tegretol seems to help me identify my depression from periods when I'm manic; this helps because knowing what mode I'm in, I can treat the symptoms of depression like not being too hard on myself, knowing my limitations, accepting them, be kind to myself, make sure that I eat. When I realize that I'm manic, I treat the symptoms by taking a walk to release increased energy & journaling to purge myself of racy thoughts. I still cycle about every 2 weeks, and I have terrible problems with irritablity & anger management. Whether manic or depressed, its all about self-care. Before taking tegretol, I was in a state of constant chaios because I didn't understand what was happening with my mind. I thought I was either going crazy or just being carefree; I couldn't understand why I couldn't keep a job and such. The only side effect I feel I have is fatigue. Tegretol does not do alot to control my manic-deppresive episodes; there are times I feel like I could crawl out of my skin, my head reels, and things seem so surreal or I get so depressed that I don't get out of bed for a couple of days feeling catatonic. Like I stated before, the tegretol does help me identify my mood swings somewhat and that helps.

Related Reading: depression | fatigue

Comment from: irishbabe5445, 25-34 on Treatment for 10+ years (Patient) Published: November 28

I've been on Tegretol for 21 years. The past few years things have been getting worse for me. I'm required to have a bone density test done every year due to me getting close to Osteoporsis. It eats Calicum which causes a big effect on my bones. I'm in my late twenties and my doctor says I have bones of a much older person. My doctors were stunned when they saw this. I went to two doctors to review it and get a second opinion.

Related Reading: tegretol

Comment from: animalover46, 45-54 Female on Treatment for 10+ years Published: January 10

I'm a 46 yr old bi-polar male who has taken tegretol for mood swings since I was 19 yrs old. The medicine works great with stabilizing my moods and the only problem I have is when I had either ran out of it or stopped taking it and had to go through withdrawls. This medicine took over having to take lithium.

Related Reading: tegretol | lithium

Comment from: on Treatment for 1-6 months (Patient) Published: February 04

Suffered trigeminal neuralgia. First pill of Tegretol XR. NO more pain. Still use each day. Anyone who has experienced trigeminal neuralgia will agree this medication is a blessing.

Related Reading: trigeminal neuralgia

Comment from: cabellero37, 35-44 Female on Treatment for less than 1 month (Patient) Published: May 11

I was recently given tegretol as a mood stabilizer for bipolar. I’m taking 100mg in the morning and 100mg in the evening. I’m also taking 20mg of adderall RX in the morning. Ever since I started to take the tegretol I feel very fatigued. I find myself fighting to stay awake about 45 minutes after taking tegretol and at times I end up taking a 30 to 45 min cat nap after taking it in the morning. Although it has be a very short time taking this medication I’m hoping this does not lead to long term side affects with the fatigue and drowsiness. I would of thought the adderall would of counter acted any of the sedation affects of tegretol but so far it has no affect at all Over all I do feel much better taking tegretol but hate these two side affects I’m currently experiencing. .

Related Reading: adderall | fatigue

Comment from: 45-54 on Treatment for 1-6 months (Patient) Published: September 25

liver function numbers way too high

Related Reading: liver

Comment from: Mark, 35-44 Female on Treatment for 10+ years (Patient) Published: October 24

I have been on Tegretol for almost 20 yrs with no side effects and no siezures.

Comment from: iceburrg, 55-64 Female on Treatment for less than 1 month Published: January 31

three weeks into therapy, right knee swells to twice normal. loving dr. advises continue therapy, drug not responsible... i can't walk now. i can't walk. an end to a life lived without the use of prescribed pharms. i have been called mr. natural for good reason. no pills can be trusted. statins cost me 25lbs of muscles from back and shoulders, incredible pain, this drug has rendered me unable to walk. thanks for your time

Related Reading: statins

Comment from: [email protected], 25-34 on Treatment for less than 1 month (Patient) Published: February 11

At this time any relief has been welcomed. Still have break troughs but tolerable for now.

Comment from: Laurie, 35-44 on Treatment for 10+ years (Patient) Published: January 28

Tegretol has kept me seizure-free for over 20 years, with no side effects. I just switched to XR a year ago. To the person who posted "I actually passed the pill in my stool after 12 hours for a 24 hr extended release": What you passed in your stool after 12 hours was the shell/casing, not the pill itself. And each pill lasts 12 hours, not 24. That is why you take it twice a day instead of once. Hope this helps someone with the same concerns. :-)

Related Reading: seizure


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Comment from: Cindy, 45-54 on Treatment for less than 1 month (Patient) Published: March 06

It began easing my pain with just a half dose. Then when I was prescribed a full dose, the pain is all but gone. I was able to discontinue the use of Vicodin.

Related Reading: vicodin

Comment from: Debbie, 45-54 on Treatment for 10+ years Published: January 07

I have been taking this medication for almost 20yrs after being on dilatin for 16yrs my body was to imune to Dilatin and this has work great for me seizure free just a little weight gain but better the having gram mal seizure

Related Reading: seizure

Comment from: Carl, 65-74 Female on Treatment for 6 months - 1 year (Patient) Published: September 23

I spent nights screaming into a pillow-n pain for weeks thinking I needed oral surgery, or root canal treatment. I also have MS, but did not connect the two. I had root canal treatment, the intence pain returned. Finally I went to my neurologist, who instantly prescribed tegretol. Immediate relief. I have attempted to reduce to 1 200 pill a day, but have had to return to 2. Easy treatment, almost instant relief. I am so thankful! Carl

Related Reading: tegretol

Comment from: drogers3, 45-54 on Treatment for 10+ years (Patient) Published: May 06

I've been taking Tegretol for over 30 years and I've been seizure-free for the last 15 years. Aside from the easy bruising, periodic unsteadiness and the cognition issue that keeps getting worse, I have no complaints.

Related Reading: tegretol

Comment from: Winston, 45-54 on Treatment for 5-10 years Published: October 16

I was in my teens and had a very diffucult time in high school. It was very hard to concentrate on school work and I could hardly stay awake. I've read where people are on these types of drugs for many years without seizures. Have they ever tried weaning themselves off to see if they have outgrown the seizures. I weaned myself off and found that I was seizure free without medication. Don't wait 20 years to try this. All of these drugs can't be good for you.

Related Reading: teens

Comment from: ctonij, 45-54 on Treatment for 2-5 years (Patient) Published: November 16

I take this medication for epileptic seizures, this medicine tegretol works fine for me, I've been taking this medicine for more than three years now.

Comment from: litloe, 45-54 Female on Treatment for 10+ years (Patient) Published: January 14

I have been on tegretol since 1981. At first i was taking 23 pills a day to find out what works best. Finally i am taking 1600mg of tegretol daily. I only suffered one grand mal seizure in 1981 but continue to have a handful of petit mals daily,which last seconds.Having an understanding Dr. and family also helps.Only bad side effect at first was double vision. Everyone reacts differently to each medicine,good or bad. Stay active in your life, find something interesting to make you look forward to getting up each morning. Stop sitting in front of the tv all day long and feeling sorry for yourself.Go volunteer at your local cancer clinic (childrens)if you feel depressed.Also i have put on weight over the years but mostly due to natural body changes and bad eating habbits.Am just happy to get up every morning with no noticable seizure disorder.Keep your mind and schedule full at all times. Exercise if your schedule is light,build your body"s endurance up slowly. Good luck to all

Related Reading: double vision | cancer

Comment from: laurel3865, 35-44 on Treatment for less than 1 month (Patient) Published: August 22

I have Trigeminal Neuralgia and was prescribed Tegretol after Neurontin and Topomax did not work for me. I have completed my second week on this med and have no side effect except for sleepiness. Not sure if that's from exhaustion and overworked from a stressful job or from this med. But besides that, I'm pretty happy with the medication. Doctor prescribed 200mg twice a day, but I'm only taking once a day b/c I do not like to rely to med. I still have slight numbing pain, which is tolerable compared to what I was experiencing and the pain occur less than before. Neurontin worked well for me, but made me gain weight, lost memory, blur vision and slur of speech. Topomax made me lose weight, depressed,lose memory and slur speech. So far, Tegretol seems to be the answer to my trigeminal neuralgia problem.

Related Reading: trigeminal neuralgia | neurontin

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