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Trigeminal Neuralgia

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bri21
bri21

my daughter has been diagnosed w/ trigeminal neuralgia she has had several tests inc mri & brain scan etc she is 42 years old and has suffered the most unbearable pain constant, with no periods of relief and at one point could not talk or even eat.. she is on pregabalin 75mg 1 tab twice daily and carbamazepine 100mg 2 tabs 3 times daily. the pain has subsided somewhat but the medication leaves her constantly feeling as if she is hungover,and feeling ill. wondered if anyone else has suffered similar or on this medication. does anyone know of a very good consultant with knowledge of this as for the last 2 years she has got no further. we live in south yorkshire thank you jan

1 like, 10 replies

10 Replies

  • Glor888
    Glor888 bri21

    Posted

    Hi Bri,

    Sorry to hear your daughter being in pain. How long has she had TN? 

    When I have TN I'm usually on one type of medication only. Tegretol is the best and worked for me. But some people can't tolerate it. When I was first prescribed tegretol I was put on a low dosage and it didn't even touch the pain so the dosage was increased until I found the happy medium which was 1200mg a day and when it was really bad I was given a low dosage of Amitriptyline one at night. Then after a six year gap when my TN returned I was automatically put on Tegretol but this time it didn't work because of side effects and due to old age, so I was put on Gabapentine that too caused side effects so I was finally prescribed Pregabaline and that worked.

    Is there any reason why your daughter's Dr put her on two different types of medication? 

    Was she tried on Tegretol first?

    She could ask her Dr to increase the present dosage, if she's intolerant to Tegretol that is.

    also has the Dr referred her to a neurologist and an MRI scan?

    if she hasn't been on the present medication long, does she take it after food? When I took tablets that made me nauseous I took them after food. Also with some medications it can take up to a couple of weeks for the medication to settle into the blood stream before they is any affect.

    Do keep in touch and let us know how your daughter is getting on. You'd be amazed at the different advice patients in here can give you.

    Someone suggested on this forum to take cod liver oil capsules daily as their TN stopped after taking them. I don't know if it is successful with everyone but anything is worth a try.

    Kind Regards

    Gloriana

    • bri21
      bri21 Glor888

      Posted

      they have taken over 2 years to come up with this ,all diffrent answers tummer , ms ,not sure ,then her doc said TN type A .they gave her some tablets that made her ill ,but then she had 12 moth not many problems ,over last few moths started coming back ,oh take paracetomol ,u know how that works ,she got so bad that she could not open her mouth to talk ,her husband took her to the walk in center ,he was not sure gave her somthing and said if no better go to AE wich she did there she got someone who know somthing about it and gave her the tablets to help pain ,and told her if no better would have to go in and go on morphine ,and was none too pleased that she had ,had 3 apt cancelled by consultants at hospital.also to get in toch with her GP .Only support vi GP was a phone call when she ased if he could refere her to pain managment clinic ,he basically said she was under enough people aready .we canot find anyone who knows about this condiction she has had MRI brain scan ,other test all we got it could be MS. can you tell me if u suffer loss of feeling in your fingers and disorientation . we are really worried jan
    • bri21
      bri21 Glor888

      Posted

      sorry did send a reply but for some reson did not send ,not put any link or bad in so c if you get. SHE has had Mri brain scan and other test ,been on with 2 years but no progress .no one seems to know anything about .feel quite disillusioned.do u get nunbness in your fingers and disorientation .not sure if u will get other message but any info you can give would be appreciated thank u 
    • Glor888
      Glor888 bri21

      Posted

      Hi Bri,

      Yes I did get your message. I've had that problem on here before where I've typed everything out and pressed send only for it to cut out and go into cyber space lol.

      I'm sorry to hear that your daughter is still having problems. It could also be the side effects of the medication she is already on. Either Tegretol or pregabalin. Perhaps she could try one or the other and see how she gets on. If she's still in pain request an increase in the dosage. If that still doesn't work, say after a couple of weeks, then wean off that one then try the other. I know when Tegretol didn't work for me this time it took another two changes for the last alternative medication to work without any side effects. The only problem with the Pregablin is my Dr said I could only start off on 25mg dosage at a time as they were very strong. So it was quite some time before I got any pain relief. But since then I've heard from other fellow sufferers that their Dr put them on higher dosages straight away. So whether it's a Drs preference or on the information of the medication leaflet I don't know.

      I know now we are all different in what is suitable for us is not for others. What about checking with your GP to see if your daughter can take Amitriptyline at night. I found this helped me at my first diagnosis of TN when the maximum 1200mg dosage of Tegretol wasn't enough. I too felt awful for the first two or three weeks, but after the nauseous subsided I was fine.

      I don't recall getting any numbness in my fingers or disorientation only what seemed like a delay in responding to anything that was said etc. someone else said they had this too.

      Dont take any slack from your GP keep going back if need be until you get results. 

      I agree with Tanz to check on the Internet. There is also a site just for TN sufferers but I can't remember the website details. When you check on the internet, key in TN sufferers and see what comes up. 

      Good luck and hope you get some satisfaction. Keep us posted and we are here for you.

      Take care

      Gloriana

  • tanz69
    tanz69 bri21

    Posted

    Hi Jan,

     

    So sorry to hear of your daughters pain and dilemma with TN.  I too am on Tegretol, but I can’t take such high doses of it, it has the same affects.  Has she tried reducing the medication during the day?  I take x1 in the morning and x2 at night. Maybe she can space it out to every 4 hours.

    X1 Morning

    X1 Lunch

    X1 early evening

    X2 Before bed

     It sounds like her tolerance is really low to the meds, so I can only suggest her lowering it. It’s really worth a try to see if she feels any different. The drug is already in her system, so I can’t see why reducing it will have a drastic affect. Sometimes its just trial and error with medication.  I had to play around with mine to find a happy medium as I have a full time job and I drive my kids to school so I couldn’t afford to feel unwell doing this. I can’t function on 200mg in the morning it spins me out. I was also prescribed Co codemol 500mg when the pain was bad. I tend to only take these again at nite or only one if I have to during the day.

     Perhaps she can reduce the pregabalin too. Tegretol is very effective on its own. Some doctors don’t know what else to suggest so they just add on and hope for the best.  It could also be that the combination of these two drugs are making her feel worse.  Why doesn’t she try reducing as above for a week and monitor it, and if it works then stick with it. That’s what I did and I am happy with just Tegretol.

    My Doctor started me on 300mg and said you can go up to 600 – 1200mg a day but don’t exceed that. I’m not a confident pill taker, so him giving me a green card to up my meds as and when was terrifying. I really didn’t want to feel out of control and nauseous which is what happens when I take too much.  My tolerance was x1 tab to function.  Her tolerance needs to be taken into consideration here, it really sounds like she is over prescribed.

    Good luck and I hope she starts to feel better soon. Pls keep us posted, every bit of info helps us all fight this awful condition.

    • bri21
      bri21 tanz69

      Posted

      you sound so much like my daughter ,she hates taking medicines.Did the pain stay with you all the time with no respite .Doc said that it usally keeps coming and going though day and not all time.she has missed the doble dose off at times as she feels as though she has a hangover but the pain returnes .she still is having problems eating too .agree the over prescribe ,and well if its working leave it .dont know about not my area if it works leave it .is the patient care .will keep u posted anything else u think or find out would be grate jan
    • tanz69
      tanz69 bri21

      Posted

      Tegretol is not the only medication and if its not working for her she needs to try others. Not everything works for everyone. Im sure she is terrified to try something else as I would be, but rather get the right thing so she can get some quality of life. In the begining the pain was constant and then over the weeks when the medication worked it got bearable and slowly but surely week by week it improved. After 6 months i think it was safe to say I had more good days than bad.

      I would also get a second opinion if you have had no luck with the GP or Neuro surgeon. You need to get answers, so knowledge is power, get lots of info from the internet, type in all the symptoms and just go from there. The more you know the less they can fob you off. If you cant get any help from your local GP go to A&E and they will help. If you have healthcare maybe go private? I have not had tingling in my fingers but this sounds like a medication side affect. TN can lead to other conditions, so research those too. (ME, MS etc). Dont quote me on this, its just what I read.

      TN affects people differently so no one is going to have the same symptoms. You never mentioned how she got it or where the pain started. I presume because she cant eat, it started with teeth which is the case with most people I have read about.  Mine did.

      Good luck!

  • tanz69
    tanz69 bri21

    Posted

    Not sure if Im allowed to post this but I found this article by a surgeon in the US. from Princeton brain and spine.  He mentions a good book to read called "Striking back" its for TN suffers. Perhaps google it.

     

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