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What are people's experiences of Tegratol?

Posted , 12 users are following.

Ellielou
Ellielou

I've been on Tegratol for TN for nearly 3 months, I'm on 400mg a day, this doesn't feel like quite enough but I really don't feel myself on it and taking more just zombies me out. My GP says people with epilepsy manage to live with it so it must be OK!

What experiences have you had? And at what point should I ask to see a neurologist? I'm on my 3rd GP and he iscertainly the most sympathetic and competent one but I can't see going on like this for years like some of you have ...........it'll drive me nuts.

Any advise out there please?

1 like, 36 replies

36 Replies

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  • Ellielou
    Ellielou

    Posted

    Patricia, how on earth have you coped with TN for so many years? I'm worried I'll end up like you (and I mean that in the nicest possible way) is it just the luck of the draw with GPs?

    I was first prescribed Pregabalin and like you I was like a zombie. Sorry I can't offer advice as I'm too new to the condition but you have my heartfelt sympathy.

  • alicot
    alicot

    Posted

    Dear Patricia,

    I feel for you! I am 63 and terrified the pain will come back. Supposedly it should be gone for years but the nerve grows back. Is that what happened to you? My surgery was called a radio frequency thermal surgery where they put a needle into the nerve and fry it/ burn it into submission. It lasts until the nerve grows back which can be 3-5 or more years. Then have to do it again and again until they find a better solution! I cannot do those drugs either!

  • hava
    hava

    Posted

    I am using 200mg Tegretol with 200mg Epleptin three times a day. I get the pain every 6 hrs so the 3 times is not enough, would like to increase but I am 7 months pregnant and afraid to do so.

    Being on this meds, well I did not know I was pregnant until I was 26 weeks. I was still on the pill and felt pregnant. Gynae says all well and neurologist says I must carry on with meds.

    Meds help but only for 6 hrs then pain starts, starts at upper lip then jaw and ear. This is the worse pain ever, hope I don't have it during labour.

    However, I am afraid cos I am not sure how the baby is (I passed the month 20 when tests can be done to check) well whatever happens I will have to face it.

  • alicot
    alicot

    Posted

    Yikes! I am wondering why they can't do the surgery while pregnant? The anesthetic? Which is worse, the aTN drugs or the anesthetic? Some surgeries don't use an anesthetic..gamma knife for one. I would get more info. I know neurologists have become drug pushers for this condition, but the surgeons are not. If you research on line for trigeminal neuralgia surgery you can see the choices and then research or call around to find the TN surgeons in your area. Can call neurological clinics and ask if they have a TN surgeon. We have a hospital that trains and are involved in medical research called OHSU. Oregon Health and Science University. I found a TN specialist there. He did my surgery Dr Kim Burchiel. He was great.

    If you can find a surgeon, then you can hopefully get off the drugs. Know that neurologists, for some reason, have become drug pushers for this condition, they will argue with you, tell you drugs are the only way, with hold information...it is sad we can't trust them. Mine did all of these things and I keep reading about this phenomenon! Why? I don't know.

  • jeanette54598
    jeanette54598 Ellielou

    Posted

    Hi I am three weeks post MVD.   Taking tegretol was a nightmare, I was on a very low dose 200mg bd which made me disorientated in terms of travel, couldn't concentrate eg trying to follow a recipe was hopeless didn't seem to be able to put things in the right order. Made me quite depressed and weepy. At the moment I am off all medication and have had no attacks! My TN involved my ophthalmic nerve. Post op I have been left with loss of sensation on right side of face, which I hope with time will recover. My blood vessel was firmly attached to the nerve and took a while to remove, in surgery just over four hours, so the nerve was traumatized during surgery hence dumbness in face. All in all I have recovered brilliantly, surgeon and staff have been wonderful.  Hope u soon get pain free Good luck xx
  • heidi20917
    heidi20917 Ellielou

    Posted

    Hi Ellielou

    My son is on Tegratol and he is on 2000mg a day and he has to have a sleep most days as it makes him tired he has had to give up on a lot of his activties as the drugs make him have very low energy levels, he has had MVD surgery and one Gamma treatment we are desparetly trying to get him pain free so he can come of the drugs, as they have such an effect on the quality of life, Get your Gp to refer you to a neurologist as soon as possible to see what your options are a lifetime on drugs is not right and tegratol can do damage long term. Keep me posted on how things progress for you, wishing you all the best x

  • adamgreen45
    adamgreen45 Ellielou

    Posted

    Tegretol is a carbamazepine, that works by blocking sodium channels, making the afected cells less acitve and excitable. Essentially its objecte is to block the pain...until the effect wears off at least...

    I have found accupunure to be a much more suitable approach...to combat pain, allthough you should ideally be taking some sort of remedy to help rebuild annd regenerate the disrupted nerve sheath so that the trigeminal nerve is not left exposed anymore. Niargim, from Synerveda is an effective herbal combination to help with that. any pharmaceutical painkiller WILL have adverse effects. Its best to choose therapy over medicatin anyday. Hope this helps, Cheers smile

  • patrice95661
    patrice95661 Ellielou

    Posted

    please try high dose b complex daily. my attacks have since stopped since taking them as advised by my doctor. i i still cannot believe how suddenly it stopped since i started taking it. i went from about four  200mg tegretol daily to none. i know everyone is different but it's worth a try. 
  • brian87983
    brian87983 Ellielou

    Posted

    I am on day 6 with TN. Just put on Tegretol yesterday and so far nothing......200mg twice a day is what my GP prescribed. I feel like taking the whole damn bottle. In tremendous pain can't see straight. Not expecting any magical words b/c I know i need to give it time to get in my system. In the meantime I feel I can't take this pain much longer. 50yr old male own a restaurant and I can't be down like this
    • Ellielou
      Ellielou brian87983

      Posted

      Hi Brian, I wrote this original post some time ago, I was diagnosed in October last year.  It does get better............when i was diagnosed I was 4 weeks from a month long holiday over Xmas to Thailand I didn't even think I'd be able to go, but it was fine.  OK a bit different becuase I was constantly tired on the Tegratol and I couldn't drink!  but the pain was well under control.

      8 months down the line I've just been taken off Tegratol becuase I didn't like the side effects (tiredness and memory loss were the worst) and I'm now on Oxcarmazepine, which is much better.  I think I need a slightly higher dose, which I shall discuss with my Neurologist next month.

      What I've found over the last 8 months is you can get it under control.  I always have a bit of pain but nothing like the excruciating stuff at the beginning I function normally 99% of the time with only the occasional glitch. 

      I hope you have a good GP?  Mine is fab.  He referred me when to a neurologist when he ran out of ideas.  My neurologist is great too. 

      You may need to up the meds, but I know it isn't very nice.  The one I'm on now has less side effects.  You will get it under control.............

  • heidi20917
    heidi20917 Ellielou

    Posted

    Hi

    Am sorry to hear you have this awfull condition my son Daniel has had it now for three years and i have seen first had what it does to a person, Daniel is on Tregratol he is on 2000 mg a day, they start you on a low dose and once it gets in your system they will gradually increase it but when it gets to such high doses it makes u very tired Daniel has to have a sleep in the day or he can not cope. Alife on these drugs has a huge impact on what u are able to do and is not a long term soloution. Daniel has had MvD surgery but he still had pain and now he has had one gamma knife treatment and we dont think that has worked either he just wants it killed dead. Good luck keep us posted how things are going for you . Heidi

    • Ellielou
      Ellielou heidi20917

      Posted

      Hi Heidi, I posted this when I was first diagnosed back at the end of last year.  I've recently come off the Tegratol becuase I couldn't stand the side effects, my neurologist has but me on Oxcarmazepine, which is much better, I've got most of my memory back! has Daniel tried them?

      I think I need the dose tweeked, but on the whole functioning a lot better now.

      I'm going to ask about the different forms of surgery next month, people have varying degrees of success from what I gather.  Could they actually see anything on the MRI?  They can't on mine but the neurologist says that is quite common.  I'f just be interested to learn if they offer the other treatments without actually being able to see anything?

    • heidi20917
      heidi20917 Ellielou

      Posted

      Hi Ellielou

      thanx for advice on changing Tegratol i will ask consultant when we c him in seotember, When Dan woke up with the pain June three years ago and it became very servere the hospitail drugged him up on Tramadol pain killers and told me he was having a physiological breakdown and would not believe their was anything wrong as at times his behaviour was out of cotrol, he is 24 and has learning problems and Autisum after six months of them not doing anything and drugging him to the point he could not get out of bed i kicked of and got my Gp to refer me to a different hospitailwher the consultant we saw was lovely and he said their was nothing physiological about Dans pain, he said their is pressure in his head causing a nerve to react, he wrote to our hospitail and told them to do a MRi as he was concerned. our hospitail did a MRI eventually but Dan panicked and could not cope and they woul not do one under aneasetic he said he did' nt think their would be anything.to find So went back to my Gp as poor Dan in bad way Ended up going to Birmingham hospitail and after a whole year of Dan being poorly with pain i finaly got them to do MRI scan under aneasetic, i had said to our hospitail i would pay if they would just agree to do MRI but he still would'nt a real battle. When he had the MRI i prayed they would find somthing as i was convinced if they could'nt see anything they would of assumed he was having physiological problemas due to him being disabled. As it was they found a trapped blood vessal in the back of his skull at the base of the trigeminal nerve, and so then where able to diagnose TN and put him on Carbazemine tablets and we did see improvment, but he suffered for a year unnecessarily and in a lot of pain. He had MVD surgery last July where they successfully removed trapped blood vessal, but because the nerve has been twitching for so long Daniel is still getting pain and is still on a lot of tablets 1000 Tregratol twice a day and 200 gaberpentin four times a day. they said they need to desensitise the nerve so it knows it does'nt has to twitch no more but this is proving difficult, he has just had one Gamma knife treatment but we dont think it has worked. Going back to consultant in september to dicuss whats next, they think in Dans case once they settle the nerve because they have removed the cause it should not come back or move to one of the other branches. they say Dan is a difficult case but since reading other people stories i know he is no more difficult than any other TN patient going through the same, i get so frustrated at time with the long wait inbetween appointments and at times negative comments from some consultants. i know for sure Dan will go through any treatments, to kill it dead as a life on drugs is so debilitating and no life at all, and if he ends up numb thats far better than pain.keep us posted on your prgress and i will dafinately c if he wiil change Dans meds around truely lots of best wishes to and thank you for everyones words of support Heidi

  • brian87983
    brian87983 Ellielou

    Posted

    Hey Ellielou  what are we both doing up its 2:50am (lol).......I am still dizzy even with the last dose I took was 200mg at 4:20pm. My throat is swollen on the left side now. Not sure I should call my GP our give theTegretol a chance. Bummer is owning a business. I need to be there..............everybody on this thread has been awesome
  • brian87983
    brian87983 Ellielou

    Posted

    Hey Ellielou

    i am on day 6 on Tegretol and the side effects are slowly going away. I still have pain in my face but not the sharp overbearing stuff. However I cannot open mouth very far without extreme pain. Once I get the right dose of Tegretol and almost all pain is gone will I ever be able to drink alcohol (beer) at all without worrying about having another episode? Quality of life is more important. However I own a restaurant/bar...please respond with your thoughts

    • alicot
      alicot brian87983

      Posted

      Just so you know, some of us cannot stand the drugs and have resorted to various surgeries.  I did the radiothermal whatever where they bun the nerve and it gets rid of the whole thing for a period of time and then if and when it comes back  we do it again.  I have a numb area and it is difficuly to eat hard food but I don't care. It is better than those drugs in my opinion.  Just my 2 cents.  Good luck with whatever you decide to do.  Why do we get this?????
    • brian87983
      brian87983 alicot

      Posted

      I can't eat hard food even before the TN hit.........missing two teeth, one on both sides second from the back on the bottom .. I can't afford the implants.....I am half thinking this is what started it all.   I so bummed and wonder what sex will be like as well.
    • Ellielou
      Ellielou brian87983

      Posted

      Hi Brian, yes I'm sure you'll be able to drink beer again once you get your dosage sorted!! I have off days and get twinges most days, but they are only twinges.  There are certain things that set it off slightly worse, air conditioning, very hot drinks, very cold but nothing I can't avoid.  I can only eat medium to hard foods on the other side and lots of chewing is out of the question but really you will find a way to manage it.  Having said that personally i don't want to spend the rest of my life on meds!
    • Ellielou
      Ellielou brian87983

      Posted

      lol!  I'm not a man but hopefully the sex will be the same as it was before!!  From a woman's perspective the worse thing was being in too much pain so it was the last thing on your mind or being too tired becuase of the drugs................
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