Trigeminal neuralgia

Just been given more tablets to try and ease the pain and was wondering if anyone has tried this drug. It is carbamazepine/Tegratol. I have been reading the leaflet about side effects and am really concerned. I am not sure whether I should take these or not so was hoping some of you could shed some light on this. Side effects include thoughts of harming/killing themselves, life threatening skin rashes, ulcers in mouth, throat and genitals, eye problems , pain and swelling of joints, blurred vision, diarrhoea, numbness and pins and needles in hands and feet, sore mouth and tongue and mood swings, possibly aggressive ones. Do I need to risk any of these side effects and how would I know if it's these tablets or just good old Behcets. I really don't know what to do. Should I talk to my rheumatologist before taking them~? Also pharmacist said they will change the way my prednisolone works. Sorry for going on a bit, but really would like any advice from you great people on this forum.

Thanks

14 Replies

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  • Hi yes all very confusing and worrying. I think what we must remember is that all meds carry side effects and the drug companies have to list the possibilities tot cover themselves. If your doctor prescribed these, did he not warn you of effects and in conjunction with prednesilone? If you are really worried perhaps you should call your consultant. Just be careful as I did this once and the consultant was great but........he had to tell my doctor who was none too pleased and felt I had undermined him......still we are the sufferers and it our bodies who have to deal with these drugs!!!!!

    Sorry I couldn't be more helpful, I am of the generation where we took what we were given, I wish I was as careful as you young people. I'm sure somebody will help you.

    Hugs and Smiles

    ,billi

  • Thanks. Nice to be called a young person!!!!! I'm 52. I told this dr at the hospital about having Behcets and all he said was "how does it affect you?" He said it wouldn't interact with my other tablets, but the pharmacist has advised me not to take them. Also according to the leaflet I should have had blood and urine tests done before starting them , as they can seriously affect your blood cells. He never mentioned this. I normally take whatever I am prescribed , as drs usually ? know best, but after having a really bad reaction to another drug a few years back, I now read these leaflets, where as before I never bothered, just did what the dr said. Leaflet also said they shouldn't be prescribed without knowing your full medical history. Thanks for answering.

  • Hi Kenjay

    My Dad has trigemenal neuralgia and takes tegretol when it gets too bad. I worked for a neurosurgeon and he said it was difficult to treat (when I asked him about dad). Everything is trial and error however if it is as bad as I think it would be I would be taking the meds.

    I went to a cardiologist recently and explained how amylodipine makes my feet swell - he told me off for reading up on the side effects however I explained to him that I don't as a rule but I had taken the same drug under a different name years ago and had the same effect.

    He took me off it and guess what? My feet have gone down.

    This is getting off the track a bit but I do tend to agree with him about not getting weighed down on the POSSIBLE side effects unless something is starting to happen - like rash, diarrhoea etc. (otherwise we wouldn't take anything).

    Hope that helps

    Love Lesley

  • I know that maybe I wouldn't get even one of the side effects but can I cope with more ulcers both ends? is it worth the risks or although the pain is horrendous, ride it out as it comes and goes, even tho there is always a dull ache? if I only had to take them when it flares it wouldn't be so bad but he says they are long term. I know you cant tell me what to do but these are my thoughts and worries

    thanks

  • Hi honey, hope you got my messgae.

    I think you won't know unless you try, and maybe plan the trial for a time when you can take life easier for a week or two. You never know, this could be the perfect med for you.

    Let me know when we can go for coffee, I'm driving again.

    Its always good to consider the consequences so wish you peace in your decision. Lots of love Jill xx

  • Hi Jill,

    No, sorry, I haven't got any recent message. Hope you are keeping well and will meet up soon, it will be good to see you again

    Love

    Lynn xxx

  • Hi Kenjay,

    I take tegretol twice a day as I have bd effecting my brain stem,cerebellum and my partial lobes. From this I have a sezure disorder. I was started on a dose of 400mg morning and night. This caused me to be very dizzy, unable to walk without two people holding me up and I vomited a lot. My max weight is 50kg and it was decided the dose was too heigh. I then went to 300mg twice a day and still my levels were above therapeutic levels. Next I was dropped to 200mg and my level is below therapeutic range. So my dr is trying 200 morning and 300 at night. She will do a drug level next week and we will see.

    Have you had drug levels done as this will give you a good idea where you sit if your problems from side effects that changing dose can help.

    I hope this has offered so information. Don't hesitate to ask further questions if that will help.

    Felicity

  • Hi Kenjay,

    My daughter started as a 5 year old with TN. Although the neurologists thought it to be migraine after a year of meds to help & no response I started my own research. Jaida had horrid facial pain in the low side of the nose only. She said it was a knife in her face. At times the pain would run up the side of the nose then over & around the eye. Cut a long story short it was Tegratol that helped prove that's what it was.

    Four weeks we had our 7 year old pain free & gaining weight. May have been the medicine but we were happy she was a kid again. Unfortunately Jaida started with ulcers in her mouth that week and suddenly felt unwell. I was waiting for the rash. All hell broke loose and after being in hospital for a week, 1 liver count rise off being incubated & flown the the royal children's hospital, Jaida's body stabilised. She was unwell for 2 months and we are never to put her on Tegratol again. That was our saga BUT for 4 week Jaida was amazing. We then tried Gabapentin, again pain free but ulcers, then Vit B12, pain free, then ulcers. Then a full body involvement of Behcet's, including joints, looking back its been there all along.

    Tegratol has made me look at medication in a different light. I have always loved a healthy drug free life, but when I needed all the Behcet's medications including Infliximab to help Jaida, I make sure I know every single reaction, small or large. We have been once bitten.

    I wish you all the very best with the shocking pain of TN. I'm not sure where you are in the world but I went to a TN conference in Australia & met wonderful neurologists. Jaida is again on Gabapentin 3 x a day, today. Being increased to 2tablets 3 x per day. We will see if that helps with headaches. But Jaida doesn't get the TN anymore but the Rhumatologis thinks it may be all the steroids etc that could be helping it. Who knows we are just thrilled its not there.

    Sorry to go on but all complicated. I think you would all be the same. Good luck.

    Michelle

  • Hi,

    I couldn't get on with tegratol but now have lamotrigine for my seizure disorder. I don't know if it would help with TN but maybe worth asking if you are not happy with tegratol?

    When my TN was very bad a few years ago I had physiotherapy for it, which included some treatment that I can't actually remember now - it was ultrasound or laser or maybe both.

    My sister has BD and she regularly gets TN. She takes tegratol with no probs. She is on steroids and has infliximab infusions.

    I think if you are concerned you need to talk it over with someone you trust - the person who prescribed it, or perhaps your BD Specialist if that's someone different.

  • Thanks for your answers. I spoke to the bd nurse about my concerns and medical history and after this chat we both realised that I had already made my mind up not to take them and to ask for the alternative treatment of a steroid injection into my jaw. I don't know what this other drs reaction will be when I tell him, but all things considered I am not going to take it. I think maybe that I would stress and worry about these effects, which is as we know, not good for us.

    So thanks again all for your input x

  • Hi michja,

    Just to say thanks and that I have been on Gabapentin for a few years and find it a very good drug although not that good for TN. Saying that though, I dread to think what the pain would be like if I wasn't already taking this.

    Glad your little one is feeling better

    xx

  • Hi Kenjay,

    Just wondering if you have tried Vitamin B12. Jaida was part of a study which showed it improving the affects of TN. It plumps up the myalin that surrounds the nerves in the body. The theory being that the nerve has more protection fro the vein so the pain is reduced. It worked for my daughter & I'm going o see if we can try it again. Good luck with the help of your specialists.

    Michelle

  • Thanks. I do take Vit B complex daily, so don't know if maybe I should take a higher dose of B12. Thanks for suggesting it, I will ask about it at my next appointment.

    Take care and stay strong

    Lynn

  • I have suffered with TN since 2006. I take tegratol . It is a v strong drug but it is effective to at least dull the neuralgia. Side effects to begin with are typically foggy head drowsiness. Occasional rashes. At one point I was taking 1600mg. I did not get side effects as you have identified. Depression is something I suffer. I don't know if it is due to the incessant pain or the medication though. If you have TN hurry up and start taking the drug. Your body can start getting accustomed to the foggy head which it appears is an inevitably after Effect of anti convulsants.

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