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Hello everyone! I'm not in the UK but I joined because I have a lot to learn about TN. I just started having left sided facial pain 5 days ago and I went to the doctor today. I was expecting to hear that I had a pinched nerve or something but after describing the numbness and pain to him I left the office with information about TN. I'm already taking medications that he would prescribe for this for my chronic migraine condition so I don't think I will be adding anything new right now. I take Lamictal, Gabapentin, and Zonisimide. He said that if I didn't already have these medicines on board then I would be in much more pain. I will be having an MRI soon and revisiting him after to discuss all of this more. I know my pain is not as severe as some of you are having but it is still pain. What are some tips to get comfortable enough to sleep at night and cope during the day? Thanks for any suggestions you have to share.

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  • Posted

    Hi Tadrummer

    Welcome aboard. Sorry to hear you now have the dreaded TN. As you will know everyone is different. Some can tolerate certain medication others not. In my case as soon as I was prescribed Tegretol during the day and small dosage of Amitriptyline at night I soon zonked off.

    But as your limited with the drugs you're already on its difficult to know what you can take at night. You could ask your Dr he may prescribe something or suggest over the counter paracetamol for the pain, which for me can cause drowsiness anyway.

    Sorry I can't be of more help but do let us know how you get on.

    Kind regards

    Gloriana

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    • Posted

      Thank you Gloriana for taking time to reply and share your experience. I will talk to my Dr about something to take at night because it is really difficult to rest with the pain. I know I will not be able to deal with everything as well if I don't get enough sleep. It is all very overwhelming right now. Again thank you

      Tamara

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  • Posted

    Hi tad, The Normal Medication Fot TN Is Tegretol t[carbamazepine] Increasing From 100mg Per Day To 400mg Or More,With Your Dr Agreement.... As I Live Rural, I Have Just Had My Tegretol Delivered After 7 Weeks Pain, My Way Of Easing The Pain Was To Place A Bag Of Frozen Peas On The Hurting Side ,[Some People React With Heat Applied} Then A Co-codamol Under My Tongue,Once Dissolved A Tramadol . Then Whole Process Takes An Hour,Turning Noise Off, In A Dark Room,,,,,,Best Try To Find What Triggers Your TN. Good Luck With MRI.
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    • Posted

      Michael,

      Thank you for your reply, information and suggestions. I'm having the most trouble with the pain tonight trying to get rest so I will try the frozen peas. I plan to call my Dr after the weekend and ask for something to help at bedtime. I really appreciate you taking time to share your experience.

      Tamara

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  • Posted

    Tegretol is generally touted as the "drug of choice" for TN and it is said that it can be taken in conjunction with Neurontin (gabapentin) but to confirm that you would need to be speaking to a Neurologist rather than your GP i think. Any diagnosis of TN should be supported by a consult with a Neurologist and perhaps you can ask for a referral if you feel able to do that. The two togethr would surely make you more drowsy. At night i have to make sure that the affected side of my face is warm and that i sleep on the other side. I take Codapane which is paracetamol/panadol but without the Tegretol i dont know how i would live just now. I am awaiting a surgical intervention. I am not in the UK either but this is a good group to be in. Welcome.
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    • Posted

      Valkyrie,

      Thank you for replying. I do plan to see a Neurologist after I have the MRI. I think I left that out of my post. You are right about that being a neccessary step. I will try warmth to get to sleep. I tried a cold pack but it feels uncomfortable. Best of luck with your surgery. I hope that it gives you relief. I really appreciate you taking time to share your experience and suggestions.

      Tamara

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  • Posted

    Hi tadrummer

    great name which must go with someone who has a positive outlook!

    I can't add a lot to the previous posts. I'm was diagnosed with TN by a neurologist about 2 years ago and the drug prescribed was Tegretol. I have no adverse reactions and take the drug when required. To be more accurate, during my first attack, one tablet was sufficient, now I take four. It's hard to know if one's in a period of remission or the drug is being 100%effective. There are many guys who suffer from this disorder who are having a far worse time than me and when I'm pain-free, I get on with as much as I possibly can. It would seem appropriate to have your condition diagnosed by a neurologist and a total review of your drug regime, once TN had been definitely confirmed. 

    Great to hear from you and keep in contact. There are a number of excellent contributors on this forum and it's valuable to just read their comments. Best wishes Colin

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    • Posted

      Hi Colin,

      Thank you for replying and sharing your experiences and suggestions. Your post is encouraging. My family doctor ordered the MRI and I will go back to see him after but he did say he wanted me to see a Neurologist to talk about the next course of action. This time spent waiting to learn what to do to get relief is tough. I just can't get rest at night with the burning pain. During the day it seems more manageable. I'm sure I need a change of medications. I'm a bit fearful of that because I don't want my migraines to worsen if I need to change medications. I'm trying to not let my worries get the best of me and I'm trying to remember to be grateful that I'm not in the excruciating pain that some others are in. I'm glad to hear that you make the most of pain-free times. I want to do that as well. The name I chose because I love drumming. I really hope that I feel able to play through this because it is a great stress reliever. It was great to hear from you too. Take care, Tamara

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  • Posted

    MRI found a large brain tumor intertwinded and pushing on my t nerve...tumor removed a year ago..pain free!  good luck...stay strong  
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