Having extreme reactions to Carbaz (Tegretol), now... reduce by 100mg. Doc not returning calls.

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Hi, I have to go somewhere, so I'll make this quick. One doc is on vacation, the other (most recent prescriber) hasn't returned my calls in 2 days, and the third (specialist) doesn't know me very well, yet. I have been feeling very faint and hungry on this drug since around Mother's Day (that would be a week and half ago, in USA). I eat everything in sight, and have gained almost a pound a day. True, I ate more on Mother's Day : ( and was lying around, but now, am back to normal activity. I quite often feel hungry and faint. I also drink like a fish (I mean, water)... my last blood work was normal-- but that was with doc who is now on vacation; I won't see either doc for another 2 weeks. I was thinking of reducing this med by 100 mg, starting tonight. Not sure what to do... pain is pretty much under control. Oh, and of course, very dopey, spacey, etc. Also, constipated, at times. : ( OK, gotta go out... I increased med by 100 mg., so it seems reasonable that I would cut it down by 100 mg.... since I can't get doc to respond! Feel a bit guilty about this, by hey, I gotta function, too!

Thoughts? Thx.

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  • Posted

    Hi Lynette. So sorry you are going through this and even worse, without the close supervision of your doctors. One would think that out of three doctors, at least one could pick up a phone. I mean it's "Trigeminal Neuralgia"....considered to be the "most painful condition in existence", so to be left hanging on without answers is an insult. I am so very sorry, friend. Now, i'm not suggesting you do what i did unless you are completely comfortable with your doctor but i have been where you are now. I think most of us have and it's miserable and scary. Again, so sorry. As i mentioned previously....i have been where you are now. I held my patience and my tongue till i had had enough. Being fed up, i dropped the specialists, refused to see Physician Assistants or settling for whoever was "on call" that knew NOTHING about me. I turned ALL my care over to my private family doctor and have NEVER regretted it. He was able to do everything the other doctors could do and faster. I had much fewer doctor appointments/hassles and my one doctor was able to answer any issue i had quickly because he knew everything, without consulting other doctors. It's been a wonderful thing and my doctor knows my full condition AND also my feelings about it. I feel more in control of my care because i now HAVE more control of my care. It was the best thing for me, the confusion stopped and I don't have to keep repeating things to different doctors.

    As for lowering your meds without doctor approving it, i would love to say it's safe to do but i strongly suggest you see your doctor first because Carmazapine is a temperamental drug to be altering the doses. For your own safety and peace of mind, i would try to even make an emergency appointment, if need be.

    Hope this finds you doing better. Take care, friend. ~Rhonda

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    • Posted

      Hi, Rhonda,

      Thanks for your reply. I would do what you did, except that (1) I don't see my family doc that often, and (2) he is on VACATION! I did try to call him, first. But I just got the usual front desk rigamarole (bs.) I was told to contact the most recent prescriber (who is in gov't pain facility),but I left two detailed msg., and he never called back. I didn't call specialist, as he is DMD... however, I may try him, next. Health care is broken, in the US! If it were a true emergency, I would go to Urgent Care. They are great, and close by, too! But I have mostly gone when I needed antibiotics, and no one was calling me back.

      That being said, I am so sedated and fat, now, I decided I'd take one less pill during the day (afraid if I do it at night, I may have seizure in my sleep, or something?) But now, I have a tad of breakthru pain, and I need to go to choir practice... so I am ambivalent as to what to do re: taking another pill. Pain or sedation? In addition, I think these pills are making me irritable. : ( I thought I was in remission, but I've had so much stress in my life the past 72 hours, I think the pain is returning.

      If I did decide to cut down by one pill, is it better to do it at night, or in the AM? Or does it matter? Are there any doctors on here?

      Thanks, Rhonda,


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  • Posted

    Hi there i am so sorry, u have to experience this terrible disease....i have been in the same spot u were. after a while i could not handle carbamazapine, my doc has changed it to Lyrica...which is working well.....as we all know nothing seems to make it go away totally....i have lidodan , which u rub on your gums etc. , to ease the pain, it usually helps me immediately, it is like orajel but much stronger....i dont go anywhere with out it....hehe

    I am now going through a surgery called Gamma Knife Radiation Therapy,....i go to toronto to have it done, our hope, is that after this, i will have no pain with in a couple of weeks to a couple of months, no more drugs....YAHOOO.

    I am mentioning this in case u and other patients havent heard of it, or of the rub for your teeth.....I have had this for over 6 years, so tired of the pain....I hope this helps you dear.....

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    • Posted

      Hi, Coreykid,

      Well since I wrote that, I have got things straightened up-- thank God! I now have three docs working on my case, but in different facilities. Though getting in touch with them is the hardest part! : ( My PC doc is one of them. The other problem, is that the local pharmacies-- for some odd reason-- don't keep Carbamazapine in stock! So wherever I go locally, I can only get half my script at a time. They say to go to Walmart, but there isn't one near me, and I don't drive. I am thinking of looking to see if it has mail-order? Not yet sure how I would arrange that; I think I need to go thru my insurance co. But so far, I am managing OK on half the script at a time.

      The other issue now, is dosage. I couldn't tolerate the 600 mg., so both doc said it was OK to reduce it to 500 mg. (ie, one in AM, one at dinner, three at bedtime). It's kind of a bizarre way of taking it I admit, and yes, there is breakthru pain. But I think I am able to function a bit better, this way, cognitively. I cannot take any of the other drugs (tried them years ago for other conditions). So I am not sure of my other options if I cannot take this one later on, for some reason. I have my fingers crossed!

      So far, I don't need the surgery. I wish you luck on yours!

      Also, I tried lidocaine-- in my case, a swish; it didn't work (got it from Urgent Care).

      Same with Oragel. I don't know why. The only thing that seems to work for me is Tegretol (Carbamazapine) !

      BTW, my PC is failing... if ever you don't hear for awhile, it means I'm finding alt. online options.

      Best Wishes,


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  • Posted

    Good luck , with all your endeavours.....

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    • Posted

      Thanks! I am thinking I may have to go back to 600 mg., because I've had a lot of breakthru pain lately. Not that bad, but there, nonetheless. I have also been under a lot of stress. I have read: a lot of ppl say stress makes TN worse. Is this true? Also, I get migraines; it seems to me that migraine makes TN worse (which makes sense, since they both involve the trigimenal nerve). Anyone here have experience with this? Thx.

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