How do you cope???

Posted , 4 users are following.

Hi all, I'll try and keep it short and simple, I was diagnosed with TN just over 3 months ago, I'm 25 and don't yet know what my triggers are as most probably don't!! Apart from the obvious severity of pain I deal with currently on a daily basis as so far no medication has been successful for me and I'm yet to be referred to a neurologist as my gp is insisting I try multiple drugs first! As u are all aware the pain is beyond unbearable but my biggest problem is more the fear I live with... I am constantly petrified of when my next attack is going to take place, I'm on edge all the time, feel isolated and when the attack is actually happening I literally break down every time. I try staying calm and telling myself it will pass but it's becoming more unbearable than the pain itself living in fear and loosing control! Has anyone else felt this way and if so how do you cope with it and have you any advice...??!

Thanks and I'd be so greatful for any advice at all x

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6 Replies

  • Posted

    Hi Chardew, you have my sympathy. I was diagnosed with TN in January this year and no, there is no pain

    like it. Anyway, after being hospitalised for a few days where I was prescribed carbamazepin (tegretol) I was still suffering tremendously until my GP suggested to up my dose from 400 mg per day to 600 mg. What a difference. At least for the time being it works, I can get on with my life, the downside (if you can call it that) do I

    sleep! On balance though. I would rather have that than the pain. So bear with it for now, your GP should find something that works for you.

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  • Posted

    Hi jenny

    Thank you for your reply! I am also on carbamezapine at the moment but because I have a 3 month old and a 2 yr old I have to be careful what dosage I take as like you said it makes me sleep! I am also taking duluxotine but unfortunately the medication doesn't seem to be helping much sad I am just relying on my e-acu pen at the moment which is an absolute godsend! I'm sure that if I could learn to stay calm when an attack happens I'd cope much better but it makes me breakdown every time it happens! I'm lucky to some degree that it only happens at night time so that's better than being in that hideous pain all day and night!

    I hope the carbamezapine w

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  • Posted

    Hi Everyone,

    I'm really struggling. Was diagnosed 2 days ago with TN and am in sever constant pain, so I believe it may be Atypical TN? i was prescribed Oxycodone but threw them away and am now regretting it very much. I will not be seeing a neurologist until next wee and do not know what to do about the pain in the meantime. Should i get another script from the ER? Or is there something else i should do? I'm on !00 mg of tegretol twice a day, but that isnt helping at all. Please Help!!!!

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  • Posted

    Speak to your gp about upping the dosage of the tegretol... I take 300mg twice a day and it helps! I'm also on duluxotine twice a day... These tablets along with regular use of my e-acu pen makes the pain bearable each day, or at least until I see a neurologist and get a more permanent answer.. The acupuncture/ e-acu pens i find really helpful so if you can get one of those its worth trying. Hope u find something that works for u soon, I totally sympathise it's an absolutely horrendous condition smile
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  • Posted

    Hi, I know exactly how u feel. I have been going to the dentist for past 18 months and I have been diagnosed with TN 2 months ago. I have 2 small kids and no family at all except my husband. Am 32 years old. I am very strong person but TN totally got me. I am always crying now even now writting this sad it affected my life completely. They started me on Tegretol and at the end the dose was so high I couldn't not get out of bed, it didn't work for me. Now I am on Gabapentin for past 2 weeks 600mg 3 times a day and it works brilliant. My attacks have stopped after a week taking Gabapentin. But now I have really bed toothache all the time. Has someone else experienced this? I keep going to the dentist and they say there is nothing. So don't worry it will stop they just have to find the right dose and the right tablets.

    Worst pain ever!!!!!

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