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Anyone got ATN?

Posted , 12 users are following.

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Neuro told me yesterday i have ATN, has anyone else got it and what are your sysmptoms and if you have been offered any treatment?

 mine is on both sides, when i first got it ihad the head pains but don't really get that now, i have ear pain sometimes on the left and on the right side i get the lightening strikes either in the cheek or teeth im not sure which to be honest! i have had this for i think a year caused by dental work which is why i thought i had Trigeminal Neuropathic Pain.

i am on Tegrol, Gabapentin and now on Lamotrigine, im weening myself off the Tegretol as they don't seem to be working. Neuro told me yesterday there is no treatment whatsoever apart from tablets for ATN.

thanks!

2 likes, 29 replies

29 Replies

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  • vicky59618
    vicky59618 fed-up

    Posted

    I've just been diagnosed with atn it appeared on Dec 12th 2015 and is still going strong I'm currently taking 1000 mg tegretol xr my pain always gets worse late afternoon and night with persistent migraine like pain above left eyebrow and heaviness and pressure over cheek and upper gums like someone pressing on it I also get burning stinging pain a round left eye and in front of ear triggers are drinking warm drinks cold wind vibrations as in car journeys and warm blowing air have you had any success with your treatment
    • Baudwalker
      Baudwalker vicky59618

      Posted

      Hi Vicky

      Very close to my symptoms I must say. Face pain, headache centered over left eye,pain around left eye and ear as well. I am taki ng 2400 of Tegratol (almost..I take oxcarbamapine which has less side effects)

      The headaches are attacked by Lyrica and that does work but it is an ugly piece of work. Started high and couldn't walk a straight line. Now on lower dose and that is sufferable but still not nice.

      I am off for a PET SCAN next Tuesday as 5 MRI's couldn't determine what the causes are.

      If that fail then amputation seems the olny certain resolution!!!!!

    • vicky59618
      vicky59618 Baudwalker

      Posted

      Glad to see others have same symptoms I must say this is having a massive impact on my life I don't see neurology again for another 6 months but it is daunting to think this is it for rest of my life I've just turned 41 it started 6 years ago with classic tn always left sided then it would go for ages then come back and last for 3day but now it just won't go that's why I resorted to gp and medication
  • joanna66862
    joanna66862 fed-up

    Posted

    Hi - I also have ATN on my left side for a year and now starting on my right side.  I am in the UK and can say that I was diagnosed by my dentist and doctor on the same day last July and up until January have managed on Gabapentin 1600mg a day, previously on Carbamepazine but after 3 weeks reacted badly.  I have just had 2 MRI's which have shown the offending blood vessel! but nothing showing on my right side.  As everyone else has said you have to research all the options available, and I think come to terms with the fact that there is no easy fix on this, it's going to be a painful journey, medication will need to be changed and other options investigated.  I don't know how old you are but I'm 46, and the thought of dealing with this for another maybe 30/40 years is quite daunting, which is why knowledge is the key.  Mine is more or less constant, I think I have had 3 days when I can honestly say I forgot I had it!  I hope you start feeling better, and find a doctor and neurosurgeon/maxillofacial surgeon who understands this condition and preferably has a special interest in it,whch I have found quite a few in the UK do.  
  • geoffrey35113
    geoffrey35113 fed-up

    Posted

    It's unusual to have trigeminal neuralgia on both sides of the head. I assume you have had a scan. I have has TN for years and sometimes go into remission for a year or so but it always comes back when I least expect it. Lyrica workds for me at the moment but that could change.

    Good luck.

    • wanganui
      wanganui geoffrey35113

      Posted

      Hi Geoffrey,how much lyrica are you taking and how long have you been taking it?Does it take your pain away completely and do you have type 1 or type 2?Cheers!
    • geoffrey35113
      geoffrey35113 wanganui

      Posted

      Hi,

      150mg Lyrica  3 times per day. It doesn't take pain away completely but it's not too bad if I'm careful about touching sensitive areas of head. I don't know the difference between type 1 or 2. My TN seems to move around. Around Christmas (can we still say that?) it affected my mouth and I had difficulty eating and talking then suddenly it moved to the nose area. Then it moved to the temple area with shocking burning pain in the forehead. Now it's calmed down and, as I said, only sensitive if I touch my head. This could change anytime. I've given up on MRI scans and specialists. They just say: 'keep taking the tablets' .Operations would be dangerous as I only have hearing (and not much at that) in my right ear. Anyway that's my problems off my chest. I suppose you're yawning by now and more concerned with your own pain. Anyway think of it as a hobby. It's taken up a lot of my spare time - that's for sure.

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