Tegretol side effects?

Can someone tell me what are the side effects of Tegretol? I am taking 800mg twice daily and I feel I am gaining weight.

I started off on the same dosage of Tegretol. The side effects I had was that I was lethargic and tired ALL the time. My doctor halved my dosage and I am back to "as normal" as we can be. I did not have a problem with gaining weight but I do not loose any weight either and since TN I have become more body health conscience.

When pain gets really bad I add Larika as painkiller. I also have a 175mg anti depressant which is working well for neuro pains.

We all seem to "play around" until we find what is working for us individually the best. I hope you get to work out your best medication option because it does make life better.

Good luck :)

Riana

Hi, before my MVD, I was taking 1600mg of Tegretol daily. I felt like I was watching the world through a net curtain. My concentration was zero and my ability to reason through simple tasks was diminished. I would regularly sleep for 12-14 hours and nod off again at the drop of a hat. I did gain weight, but never made any connection with my medication and just put it down to the fact I was less active. I should add that I was also on 1800mg of Gabapentin daily, which I never viewed as a problem, I was pretty convinced the side effects came from the Tegretol. Hope this helps.

Regards

Jim

I was unable to take Tegretol. I know others that have complained of lethargy and weight gain. I was placed on Topamax and it does not have either side effect for me. I have been lucky enough now that a low dose is working. At a higher dose there was some forgetfulness but nothing too awful. Everyone is different with what works for them and I tried quite a few and stuck with this one.

Thank u so much guys…i guess i am lazy enough to blame the medicine for weight gain rather than actually doing a bit more physical exercise…i had my mvd exactly 2 weeks back and i am asked to take the tegretol for 3 more months…i have this vision problem which my NS acknowledged as the side effect of tegretol but not the weight gain…
Thanks
Swayambhu

I meant to mention that I had a problem with my vision. It was on occasion blurred, but the one I found really scary, was the delayed effect if I turned from looking at one thing to another. I would continue to see the thing I had looked away from before I eventually caught up with the object I was now looking at. I suppose the delay was only fractions of a second, but I was very conscious of it.

Jim

I was unable to tolerate tegretrol, however even with the nausea and vomiting I was starting to gain weight. Some of it was swelling of my lower extremities which is a side effect I get from all the anti-seizure meds that are prescribed for this type of pain. I recently increased gabapentin which I have been on since 2000 from 300 mg. 3x to 600 mg. 3x a day and wow, I started to gain weight...I was having eating binges at night. Also more swelling but managing it with a water pills, low dose. I feel bloated and I swell even in my hands. So correcting the eating disorder but not active enough to lose the 8 to 10 pounds I gained. I see you are a man, I am way past menopause but weight gain is usually a woman's problem. Now the holidays are here but I don't buy or cook in my home. So I will have to be very careful...no leftovers coming home or deserts!

And the increase in gabapentin has been more helpful, I have atypical TN and GN. Still getting flare ups but my ears are not always involved. Sharon

Tegretol works on TN by relaxing the Trigeminal Nerve, allowing it to temporarily break contact with the compression that causes the pain. In order for it to work on TN, sometimes very high doses are necessary in order to get that direct contact with the compression to relax enough. But whilst it has this relaxing action on the Trigeminal Nerve, it also has the same effect on every other nerve in your body, causing the whole body to relax, with the resulting tendency to go and have a lie down (whether you sleep or not). Physical inaction over time causes weight gain. Because of the pain we are less likely to be able to do meaningful exercise, adding to the problem. If you're a misery eater like a lot of people, you might unconsciously be eating a little more comfort food than usual, which adds to the problem. I would suggest trying to drink more water more regularly, and trying to have a simple exercise routine, even walking a short distance daily will help with the weight gain. Another side effect is 'foggy brain' which many of us have experience of.

I find that when the pain is worse I have to take Tegretol morning and night and then go off it back to one a day. When taking 2 a day (CR200) I am like a zombie. I am relatively active but weight gain is still an issue. I've just started a 30 day fitness challenge to see if I can/will lose a little weight but not holding out much hope on that. My diet is little or low or no fat and same with sugar.

Hi, I was taking Tegretol before my MVD & then told to take it for 3 months after. But I still need to take it now, even though I had my surgery 3 years back. I think it did make me out on weight & I felt that it made me feel quite drugged up & unable to concentrate. I only take it now occasionally. But one of my concerns with this medication is another side effect. This is why I cut my dose down, as I’m really quite frightened. The disease is known as
’Stevens - Johnson’s syndrome’. It’s caused by a drug reaction & is linked to taking Tegretol.
Hope you are feeling better soon
Regards Sally

I am now taking 800mg for tegretol and side affects ive dealt w bad is weight gain and liver failure. On my good days even for 3mnths i was painfree and started exercising again. When taking teg its really hard to lose the weight. Even eating healthy etc my weight was just expanding. Hate teg so much cos we can never win :slight_smile: ive been painfree now for 3mnths and drs now want to focus on my liver which has been on the down side since having tn in 2007. Had MVD 2010 an my tn came back in oct 2012. I get relieved for a bit from one thing and something else props up. Hope you find something that wil help with ur weight gain. Before tn i was a netball gym freak weighy at a healthy 65kg for my height and now hit the scales between 93-98 even w exercising etc. xxx

I’m only taking 600 me of Teg. I have only had 3 days recently where I felt like my old self. I had ENERGY! Thanks for all the comments I thought it was just me. I too have a terrible time concentrating, brain fog, spelling, remembering names and spend my non working times on the couch. Weight gain too. I have joined a weight loss challenge at work and I think I have clearance to go back to my personal trainer in January. I’m just a mess. And I was going to ask for a higher dose of Teg because I still have break through pain. Guess not now.
By the way I saw Dr. Ken Casey yesterday, we wonderful man!! To bad he can’t help me, because I have Atypical :frowning:

Ann, I too am atypical with TN and GN. I saw the best of the best listed in my area Tampa, Florida, a teaching hospital at USF and he looked right into my eyes and said "I don't want to try to do anything for you because I am afraid I will make you worse." So....doing the med thing and just dealing with it. I have read a lot about Dr. Ken Casey and he is absolutely right. You could find someone that might try to do something, some have done better but I have read too many failures.

And yes, getting fat on increased gabapentin, just fit into my jeans for the winter...have to stay right where I am. Was having night eating binges but stopped. Sharon

I had trouble with double-vision until my doctor cut my dose.

Thanks Granny ! Until I saw all these comments I thought I was just lazy& with the time Chang in Michigan it gets dark at 5 & the couch us where I go. It’s a struggle on weekends just to get stuff done. Guess is going to be a herculean effort. I knew Dr Casey couldn’t help me ( by the way he is dr. # 14 for me) but I just needed to see the best there is. Lucky for me he is in Michigan. He was so kind. Anyway guess we just fight on & endure. That’s all there is . . .

Ann, you got it, that's all there is...my daughter simply asked me if I could move on and deal with it. The searching for a treatment is exhausting. The only treatment I am interested in is PNS, nerve stimulation but can't find it in my area. I have not asked my pain doc about this, he might know who is doing it...some have had great results. Sharon

I was 68kilos 3.5year back...then i started taking tegretol..and now I am 94...I am just not able to lose weight no mater how much i try...

before my MVD, for 3 continuous months I used to jog for close to 8kms daily and then work out in the gym for 1 more hour...still I couldn't lose even 100grs..So after working out with every possibility I was forced to believe that it was the med which is the culprit

Wow! That’s not incouraging:(. I’m still looking forward to the boot camp extreme work out classes next month. I had to stop when the attacks hit in June. I’m going to see my regular neuro next week, I will ask her what to do or expect. I’m guessing from what you say about your experience , not much:(

I am taking 400 mg a day now ,down from 800 mg per day.My side effects are tiredness even being down to 400.I had a Gamma Knife procedure one month ago.I am very glad I could cut down my meds.When I was on 800 mg a day I did have a problem reasoning things out, and was very groggy....I didn't seem to gain weight.Good luck to you.

wow reading these replies scares me. i was on tegretol xr for about 9 months 200mg or 300mg which for the most part managed the pain with 3 flare ups in that time...i don't expect to be pain free because with being pain free i would almost be comatose with medication. i am a speech/language therapist and need to be able to have my wits about me. my neurologist shared that some of us with the most severe pain actually react best to smaller doses of medication...but i did gain about 10 pounds over that 9 months which was bothersome cuz i like to run, bike and be out enjoying life (I am 52 and think of myself as an active young person) maybe part comes with my fighter attitude that i will not let anything in life take me down (maybe that comes from holding twin daughters in my arms until they became angels) but whatever it is I am working with my neurologist to have the best quality of life, exercise and having faith that I can weather this too. i will not have the surgery. i know 3 people who have had it and the outcomes have not been good. i have now switched to topamax because she feels that i have had too much break through pain and wanted me to give this a try. we are going slowly with the dosage as i once had an allergic reaction from a medication and got steven johnson syndrome which could of been deadly but was caught (lots of blistering and peeling of lips mouth and throat which can kill you) but so far no side effects and only on episode of mild pain (i was very stressed out at work which i think maybe triggered it). i get nervous when i hear of such high dosage of medications people are taking. i get nervous for myself when i think that i am taking a medication that was designed for seizures. wonder what that is doing to my "normal" working brain that is not having seizure issues but using it for a nerve problem. it is scarey. i am working with my neurologist closely. she likes that i come in asking what is the least i can take to manage and tolerate this. i don't want to change who i am. this is an ugly condition and i feel for each and everyone out there with this. unless you have this you really cannot imagine what he pain in like. i try to share with people that i would rather have 5 babies back to back with no pain medication than a flare up of this. prayers for all thankful for this blog merry christmas and here is to a pain free holiday to all