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Atypical Facial Pain

Posted , 6 users are following.

christy44311
christy44311

Hi, Everyone! I’m wondering if anyone else has been diagnosed with atypical facial pain? I’ve bad awful pain in my teeth, jaw, cheeks, and even my neck for the last year and a half. Once I was diagnosed, I was given gabapentin and cymbalta to help with the pain. Some days I feel better, then others are awful. I get numbness, tingling, and pain all at once sometimes - this condition is awful. Any help would be greatly appreciated!!

0 likes, 11 replies

11 Replies

  • lee12629
    lee12629 christy44311

    Posted

    Could you have trigeminal neuralgia? My friends has similar symptoms.
    • christy44311
      christy44311 lee12629

      Posted

      I’ve asked my doctors at Penn a million times if this is TN and they are confident it’s not, and refuse to change the diagnosis. I don’t have sharp, shooting pain, but more of a constant ache. It’s awful. 
    • Deidra
      Deidra christy44311

      Posted

      I find that very odd that wouldn't diagnose you as ATN...

      Maybe go to a different neurologist for a second opinion.

      I've had that same pain as you described and in August of last year was when I was officially diagnosed. All the years prior I believe that was the. Until I experience the constant searing, ripping, burning pain which lasted two weeks straight and gradually got worse.

      The first 2-3 days I noticed I woke up feeling like I got punched in the jaw and it was very achy and tired feeling. By the 4th or 5th day, I then started getting the burning ripping pain near my ear, and by the 6th or 7th it traveled down my lower jawline and down my neck. By second week I could take turn my face or bend my.head forward of upward or even put on a shirt. 

      So don't let this pain be ignored, even in it's earlier stages. Achiness can be just the start of it.

    • Deidra
      Deidra

      Posted

      Sorry, typo above. "All the years prior I believed the pain was TMJ..."

    • Deidra
      Deidra

      Posted

      Also, tingliness is usually an indication  that the pain is soon to come. I usually feel this when I'm stressed out over something or anxiety hits me. It's hard to reverse it, but be mindful of what you're doing/feeling when you start getting the tingliness.

  • phil-mbro
    phil-mbro christy44311

    Posted

    I suffered withTN for 2years after being diagnosed , which ended upwith me collapsing on board the vessel i was living on whilst working offshore due to the pain i was in ... the pain you descibe does NOT sound like TN , as there is no punch or ache as you said ! I had 2 CT scans & many other forms of medication "mainly strong pain killers" to help ... which of course did nothing ! I was at the point of suicide when I collapsed with the pain .... which started with a warning to my lower lip , a quivering if you like , which gave me a cple of seconds to either sit or lay down , I then felt a current running under/above my jaw , sometimes the pain is not instant , but this is even worse as you have a feeling that its just toying with you ! But when it hits .... well lets just say it was like Freddy Kruger using his knives , this was lasting for 2/3hours 2/3times a day at its worst .... hence the dark thoughts ! There was no eating -no brushing of teeth & no shaving for 7 months , all because i knew that these might set it off ! 

  • christy44311
    christy44311

    Posted

    Thanks for the advice, everyone!! It’s so weird because usually it just feels like awful toothaches, but then that will go away and my face will feel numb, tingly, or achy. This all began when my daughter was 6 months old and I chipped my tooth on a pretzel. I went and had a crown placed, and all hell broke loose. I was back to the dentist and Endodontist at least twice a week for months only for them to send me away, and tell me there’s nothing wrong with my teeth. Some days I feel ok, then days like today, the left side of my face is tingly and numb, and sometimes my mouth will burn. These doctors make it sound like I’m crazy because I’ve had every test on earth done, and everything has come back normal. CT scan and MRI all normal, too. Atypical Facial Pain is the diagnosis. I just keep praying it will dissipate completely one day, but just when I think I’m almost there, I’ll get a stretch of bad days and it’s so depressing. Thanks for all the advice. Good luck to everyone. This ailment is not for the faint of heart. sad
    • Deidra
      Deidra christy44311

      Posted

      I’m sorry to hear you going thru this, and I hope you find relief soon. If it’s any interest to you, I would suggest getting “Strike Back” Trigeminal neuralgia and facial pain handbook. I recently ordered this book as well because I’m a part of the Facebook group for FPA (facial pain association) and a lot of people have said to get this book. Especially when it comes to informing doctors about this condition, and those who have TN/TN2/ATN and Facial pain  and don’t know about the numerous types of pain/ symptoms you can have with this disorder. 
    • christy44311
      christy44311 Deidra

      Posted

      Thank you, Deidra! I will certainly order that book!! Any information on this awful condition would be helpful. Has your pain subsided at all?? Today my pain is in a completely different spot (other side of my mouth) and feels like a toothache. I get all kinds of sensations ....
  • CB70
    CB70 christy44311

    Posted

    Yes! I’ve had this over ten years. It’s the worst thing ever. I’ve been to so many Drs and hospital appts and get my hopes up that someone can help me. Usually it’s just more painkillers. I live on tablets sad

    Today my GP has started me on carbamazepine as he isn’t convinced that it’s not trigeminal neuragial, though the pain is always present to a lesser or greater degree.  Fingers crossed it works!

    You have my sympathy, this is a very painful condition. Some days I’m exhauated with it. 

    C x

  • linette61034
    linette61034 christy44311

    Posted

    Hello, I have the same, though have not yet been officially dx (but informally). Can't see a specialist until May. Have been recently put on Tegretol (Carbamazepine). I live in the US. The pain is often unbearable., and in my case, it is one-sided.

    Why does this site keep highlighting my words as I type? Annoying. Well, I too am looking for support!

    I am not sure, yet, if the Tegretol is working, but I think it has dampened down the pain, somewhat. I was told today by facial pain call- line to use a warm washcloth or compress. Yes, it did help (though I think cold works better for acute pain;* ie.* the way the pain was in the initial stages... when I broke a tooth.) But have had a bit of this ever since I've had multiple tooth extractions. I suspect it's atypical facial pain-- or whatever they are calling it, now--as the pain is almost constant, though it waxes and wanes.

    I am wondering if I ought to add another drug to this... but also, I am still titrating dose upward. And I cannot tolerate most other drugs (they were tried in the past for other conditions).

    This is totally affected my life; I am barely functional. I also look forward to acupuncture for this; am told it works wonders. It did help with some of my other conditions.

    My prayers and empathy for all those on here who suffer from this horrible condition!

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