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Tirgeminal Neuralgia, now and forever

Posted , 5 users are following.

charlotte73157
charlotte73157

Some facts:

Trigeminal Neuralgia (TN) starts off slow and then occurs more often and for longer periods.

There is no real cure.  Some medications help and some procedures help.

 I am a 71 year old woman who has had TN for 15 years.  I have had every known treatment including Microvascular Desompression (MVD), Gylerol injections, drugs like Neurontin, Tramadol, Tegretol, etc.  I have also had Gamma Knife surgery, aka stereotactic radiosurgery (SRS), twice.  Currently I am in remission, not due to the disease's letting up, but becuase the SRS left the  side of my face numb.  I suspect the numbness (imagine a xylocaine injection from your dentist) keeps the TN at bay.

1 like, 5 replies

5 Replies

  • eddie13
    eddie13 charlotte73157

    Posted

    Hi Charlotte,

    Good to hear from a veteran that knows we all must manage rather than find a cure. There will be bumps, but life will be ok.

    eddie13

  • tlynn
    tlynn charlotte73157

    Posted

    is your pain bilateral? at the onset of my girl's pain, she had it on one side but it soon went to the other side. God bless you and everyone who is going through this..I cannot understand why there is such a cruel and ruthless condition out there with no answers.
  • lockjaw1
    lockjaw1 charlotte73157

    Posted

    Hi Charlotte,

    If you dont mind, could you elaborate on how slow it started and what are the triggers? Thanks.

  • alicot
    alicot charlotte73157

    Posted

    Radiothermal surgery where they stick a needle in your face and burn the heck out of the nerve is what I did.  Hasn't been a a year yet but I have a surgeon on hand if it comes back. Drugs do NOT work for very long so that's out.  I have numbness too and I am hoping that will keep the pain away!  Good luck to all of us!
  • maggie80535
    maggie80535 charlotte73157

    Posted

    My TN started 3 years with pain on right eyebrow and on washing hair.Stayed. Like that for a year until I broke my hip.TN then disappeared  for 18months only to come back much worse (yelling at son was trigger) under nose ,top lip and cheek Getting into bed is a trigger as head positions change.So break hip for remission(lol),be nice and don't go to bed. I am on gabapentin and still get attacks.What can we do.?
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