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Breakthrough pain with atn

Posted , 7 users are following.

vicky59618
vicky59618

I was on tegretol xr 1000mg splitting doses 200mg every 3hrs and amitryptilline 25mg at night and pain started creeping back in on Monday with ache in lower jaw then on Tues the familiar stabs and burning pain returned so I went to gp to increase dose was told take extra 200mg over 3 days increasing every 3 days until on 1600 mg or until painfree I've never been totally painfree since December anybody have any suggestions or ideas as to how long episodes can last I'd be very grateful

0 likes, 20 replies

20 Replies

  • dawn_49415
    dawn_49415 vicky59618

    Posted

    Hi Vicky, I started on 100mg X 3 daily, 20mg of Amitriptyline at night time and had no pain for 3 months. I'm now on 300mg X 4 daily of Carbemazepine and 50mg of Amitriptyline at night time, just started this week and feeling quite sleepy all the time at the moment. Hoping this doesn't last too long and I can get back to a pain free life again.
    • vicky59618
      vicky59618 dawn_49415

      Posted

      I know it's hard you try to have a normal life but it keeps reminding you it's thete
  • eddie13
    eddie13 vicky59618

    Posted

    Vicky,

    1600 is very high dose. Is your doc testing for toxicity ?

    eddie13

  • joanna66862
    joanna66862 vicky59618

    Posted

    Hi Vicky - I'm taking 1600mg per day, my consultant has told me I can go up to 2700mg per day if necessary but have an appointment with the Neurosurgeon on the 31st May so hopefully they can do something, as I already feel like my brain has slowed considerably.   I've had more or less constant break through pain since last July, I can remember having 2 days when I forgot I had Trigeminal Neuralgia, that really sticks in my mind because every day I know it's there, just a few shooting pains, ten minutes of toothache, sore gums etc then it's gone again for a few hours, it's as if it just wants to remind you it can strike at any time.   Sorry I can't offer any hope but just thought you'd appreciate knowing your not alone! 
    • vicky59618
      vicky59618 joanna66862

      Posted

      I get my mri on 4th June see neurology again in October just hope it settles down😫
  • Valkyrie
    Valkyrie vicky59618

    Posted

    have you tried Tegretol CR? I was on 1000mg a day Tegretol XR and still got pain breakthrough. Neurologist suggested I give Tegretol CR a go but gave me no instructions about how to change over. After giving myself a world of pain trying to do it immediately I woke up to myself and did it one dose at a time with a week in between making changes. It took about three weeks to kick in fully enough to stop my pain entirely but i have been one month now pain free. maybe it's worth a go for you. Also has your Neurologist not suggested taking another drug in conjunction with the Tegretol. I take Lyrica 400mg spaced out across 3 doses during the day. (6am, 2pm and 9pm). That's all I know
    • vicky59618
      vicky59618 Valkyrie

      Posted

      Neurology switched me from norm to xr she mentioned trying to put in something else but that was it and don't see her again till October feels like this is never ending
  • mufti04211
    mufti04211 vicky59618

    Posted

    Vicky. All patients of TN. I suffered TN for 3 years, took tegretol, 1000 mg daily. I went thru the surgery MVD, it wasn't difficult or painful as one day pain seizure, it is better than swallowing all chemicals!. Go for it, live your lives.
    • vicky59618
      vicky59618 mufti04211

      Posted

      I m on my first day of tegretol xr 1600 mg hoping this will resolve it I still get my 3day flare up although it wasn't as intense at the weekend as it normally gets but still it delivered a punch I don't see my neurologist again til October I've got mri on 4th June and I'm really hoping they find something that can be removed but I bet they don't
    • dawn_49415
      dawn_49415 mufti04211

      Posted

      Hi I'm on Tegretol 1200 ml a day ( liquid as I can't swallow tablets) and 50mg Amitriptyline I seem to have good days and not so good days, currently off work. Neurologist appointment not until end of July, if I'm offered the surgery, would you recommend it ?
    • vicky59618
      vicky59618 dawn_49415

      Posted

      Hi dawn I've not had surgery I've only since December started to take regular medication since the pain became continuous I think a lot of ppl on here seem to recommend the surgery if the neurology appointment is your first they probably won't even go into that discussion they tend to go down the medication route first it's certainly a question I'm gonna ask in my 2nd appointment in October I'm still having daily pain even on 1600mg and 25mg amitryptilline
    • dawn_49415
      dawn_49415 vicky59618

      Posted

      Ah right, yes me too, I've been batted backwards and forwards from ENT to Neurology for years, thankfully I got a diagnosis at the beginning of this year so feel atleast now someone is listening !!
    • vicky59618
      vicky59618 dawn_49415

      Posted

      I know exactly how you feel this condition is really life changing I'm just praying for remission do you get the muscle hyperactivity from tegretol It's like sum1s tapping on your nerves really weird and annoying I noticed it in my feet and when I clap my hands I csn deal with that though it's the pain I don't want
    • dawn_49415
      dawn_49415 vicky59618

      Posted

      Crikey, no I have not experienced that, I just feel doped up all the time, I'm not sleeping as the pain wakes me every night about 2am then I'm pacing up and down or sitting on my bed holding my head and trying to calm myself down, it's horrendous isn't it, it's a cruel condition to have
    • vicky59618
      vicky59618 dawn_49415

      Posted

      Yes it's horrendous can your gp not try and increase tegretol see if it helps more xx
    • dawn_49415
      dawn_49415 vicky59618

      Posted

      I went to my doctors on Monday last week and have been on a higher dose since then
    • vicky59618
      vicky59618 dawn_49415

      Posted

      Yes same here my gp has said I can go up to 1600 which I've done no improvement as yet have u had mri I'm hoping they see something on mine that can offer a remedy but reading on here the mri is often clear I just want my life back now
    • mufti04211
      mufti04211 dawn_49415

      Posted

      Yes. As I told you I suffered about 3 years till I decided to go for the surgery. Are you afraid? Think of the deaf who have devices planted which need to make a whole in the skull to wire their nerves to them. I think it is more risky than MVD. Hospitals and insurance companies (programmes) don't like surgeries as they cost them a lot. I was encouraged by a neurologist because my body can stand surgery. I was 51.5 when I had the surgery. I didn't have diabetes, heart diseases or any other chronic diseases. Don't wait till it is too late. The surgery began on Monday 8:00 a.m. I woke up dizzy at 14:35 with pain less than any tiny TN seizure. Till Tuesday morning I was doped because of headache. On Thursday noon I left hospital forever with the worst pains of the worst disease or whatever you call it. Thanks to Allah who sent me good doctors.
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