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Autoimmune TN

Posted , 3 users are following.

martin14635
martin14635

Does anyone have TN from an autoimmune disease or syndrome.  I do and the pain is killing me.  I started with Oxcarbpenzine which didn't do a thing except turn me into zombie and then was switch d to Gralise (extended release Lyrica) After a dose of 1.2 grams daily it took the edge off but still is unsatisfactory.  I also turned into a zombie with this

The pain triggers with any food or vibration on my lower left jaw.  Brings me to tears.  Anyway, if someone has a suggestion I am certainly listening

Thanks

1 like, 6 replies

6 Replies

  • heather30609
    heather30609 martin14635

    Posted

    Hello Martin, I do also have lupus but in discussion with my consultant and based on blood results, we don't think it's related - just a nasty coincidence!  If your healthcare team think it is connected then obviously they need to work with you to get your autoimmune condition under control and that may help.  However, if it is coincidence then my advice is, continue working with your medic to find the right dose and medication to control your pain - and make sure you take it at regular times throughout the 24 hours so that you have an even level of medication at all times.  Good luck with it.  Heather

    • martin14635
      martin14635 heather30609

      Posted

      Thank you for your thoughts. None of my Doctors tell me what the underlying cause is.  I do have Interstitial Lung Disease, Raynauds, and Hashimotos Disease so I do think it is an autoimmune disease or some overlap of a few, but no one seems to advise me from a systems view of the whole picture.  It seems that I have to do the research and then ask questions.  I have no idea if I am asking the right questions.
  • patyrod
    patyrod martin14635

    Posted

    Hi Martin.  I have bilateral trigeminal neuropathy, which is loss of sensation and shooting pains in my whole face, mouth, nose and scalp.  My MRI showed that my trgeminal nerve is inflamed, rather than compressed.  The rheumatologist thinks the inflammation is caused by an autoimmune factor found in my blood.  When the neuropathy struck, I had had Raynaud's for about 50 years and vitiligo for about 3 years.  So, the autoimmune factor could be due to that.  They are not sure.  Then, about a year ago, I came down with rheumatoid disease.  The rheumatologist has  given me a blanket diagnosis of connective tissue disease.  Neither he nor my neurologist has ever seen a case like mine.  However, I am fortunate that my pains are not as intense as the trigeminal neuralgia pains.  The downside is that my numbness has been constant for a year and a half and affects my chewing and my speech.

    • martin14635
      martin14635 patyrod

      Posted

      Thanks I appreciate your input.  I am sorry you and Heater above have to go through this. I wonder if it is autoimmune based would any kind of surgery help? The best I can do so far is to take the edge off but the pain remains intense.
    • patyrod
      patyrod martin14635

      Posted

      What did your MRI show, Martin?  Is your trigeminal nerve compressed by an artery or vein or is the nerve inflamed like mine?
    • martin14635
      martin14635 patyrod

      Posted

      They did not see anything.  However, I had it without contrast and I suspect I will have to get another one
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