I’m new to tm and I’m scared witless to move, eat shower or do anything . I’m so scared of the pain

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will i ever be able to function normally, i feel as if ive lost my life. on day 2 of carbamazepine.

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  • Posted

    Yes you will. I have suffered TN for the last 20 years. Carbamazepine will kick in and reduce the pain.

    You must eat no matter the intensity of the pain. Have some soup or something that you do not need to chew.

    At present I am going through a very pain episode but I know it will end sooner or later. So will you yours.

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  • Posted

    it's frightening feeling isn't it but don't lose hope, it may take a while to get the right dose for you, it may be that another drug will suit you better but we're all different. At least you are on the right path and you will find how best to manage it. Best wishes to you, Heather

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  • Posted

    thanks heather, i cant believe how things have gone so downhill in a week. i was getting shooting pains in my upper face for a while and though they were sinus related but last week the electric shock type kicked in and they make me howl theyre so bad., up over my nose eye and front and top of head. pray the carbamazirine kicks in quickly.

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  • Posted

    Good morning Rosieb4u, I'v had TN since 2011, I'v tried it all but surgery, I might suggest oxcarbazepine, it has less side effects than the carbazepine, it helps me the most, I have the shocks in left side of tongue, then pain goes under teeth on that side, I also have a numbing med. That I use, its calms it down and help me eat, also 3 yrs ago I tried CBD oil subl. and its helped, I only take oxcarbazepine as needed. The numbing med has really helped. Wishing you the best, I will give you name of numbing mouthwash and CBD if you need. Hope your day is better!

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    • Posted

      Marsha and Moira 23432 ,,, the following is my prescription for the miracle mouthwash. I hold a tsp full in mouth in area thats so painful until I feel its numb then you spit it out. Mix equal parts, Lidocaine/Benadryl/mylanta/prednisolone. Qty:240 Lidocaine Sol. 2% visc. I hope this works for you, I have to use 4 times daily and some days more. The pres. Says 4 times daily. I wish everyone a pain free day.....

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  • Posted

    I've had TN for 20 years, Lyrica has helped me the most (and now they FINALLY have a cheaper generic version) As I said, it helps but I still have a lot of pain. You will find a new "normal" however don't let it steal your life. You will develop a higher tolerance to pain and will find it easier to push through and do regular activities. I don't like saying that, but unfortunately it's the reality unless you find a med that works really well or your miraculously healed (and I DO believe in that by the way) Whatever you do, keep trying different meds until you find one that helps...yes it's exhausting, but don't give up because there IS relief. You just have to keep going until you find it.

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  • Posted

    I've had TN for many years. I'm on carbamazepine, Gabapentin, and Baclofen and im still in pain. I dont no what to do life is not the aame for

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  • Posted

    Hello rosieb4u,

    Life will go on and you will get remission. Stick with it, love. I take 400gm Carbamazapine morning and night and after 20 years seem to have found that the higher doses help a great deal. We all get bad periods no matter what the treatment , but you can get long remissions. T.N seems to have no pattern and each case is different although we all share the pain and the frustration that no one around us except the very closest understands how intense it can get. Take heart in all the advise and the positive views you can find on this site and keep going back to your neurologist if you feel the need. I know how depressed you are. We've all been there. Keep remembering that the episode will pass and that one morning you will find you can wash you face and clean your teeth easier and a remission will follow.

    Best of luck and prayers, Gill

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  • Posted

    hi rosie. hold on because you can find relief from this awful condition. the carbamazapine type drugs are very effective in relieving and controlling the pain. finding the right anticonvulsant and a workable dosage can take time. I'm a year post mvd and my tn returned full on but 3 days into oxcarbazapine and I'm pain free. with just a few niggles in the background. and now on only a low dose of 300mg twice a day.

    what has been hugely helpful for me has been mindfulness based pain reduction techniques.

    they help with our response to pain which most often leads to exacerbating the pain. changing my reaction to a more controlled response allowed the attacks to do their thing and subside. when I reacted physically to the pain by moving suddenly or cringing just kicked the wheel and sustained and initiated more attacks. It takes some weird kind of courage to just be with the pains. but let's face it you've nothing to loose. Regards and best wishes pete.

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  • Posted

    i'm so very grateful to you all for replying, much as i wouldn't wish this condition on even my worst enemy i take comfort that you all know the pain and fear i'm dealing with. my family and friends are supportive but until you experience it you don't fully understand the intensity. i had a pain free day yesterday and will now start to pull myself back together with the hope its under control . thank you all again.

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    • Posted

      I'm in year 5. I had an mvd in 2018 but it's now returned, but with much less severity . it's now manageable with the lowest dose of oxcarbazapine. there is life with this awful condition. so don't despair. I've found mindfulness exercises hugely helpful. part of the pain of tn can be reduced by changing our reaction to a more measured response and this can be learnt. that sounds like nonsense when your face has enough electricity coursing through it to light up a small town.

      have a look at the work of John kabat zinn. now my hero. best wishes .peter.

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