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Facial prickling getting worse - TN?

Posted , 4 users are following.

py2016
py2016

For over a month I've been getting sporadic (a few times a day) stinging nettle sensations in my right cheek.  I saw my doc who just said it sounded like trigeminal neuropathy and basically just dismissed me.  It seems to be getting worse and much more frequent, accompanied by a dull throb in my right temple when it happens.  Should I just not worry or should I seek further investigations?  What is the difference between trigeminal neuralgia and trigeminal neuropathy

0 likes, 6 replies

6 Replies

  • heather30609
    heather30609 py2016

    Posted

    Hi py2016, I'm not sure that I can give any words of comfort.  I had an intermittent feeling of a bit of cotton wool tickling my left cheek for quite a few years (in retrospect) then the tn started in earnest.   It is extremely painful and the medication to control the pain makes you sleepy, dry mouth and constipated.  You just have to judge for yourself how you can cope with symptoms you have, and observe as time goes on.  If it gets worse, you can ask for a referral to neurologist who will rule out other causes and then if tn is confirmed its a matter of finding the drug management that works best for you.  Good luck with it and hopefully it will be many years before it worsens, even if it does.  Heather
    • py2016
      py2016 heather30609

      Posted

      Thanks. Everything I've read about TN sounds just horrible so I really feel for everyone who has it and pray that this is not it, although it is making me very worried. Until a few days ago before I started researching, I never even knew it existed. 
  • Valkyrie
    Valkyrie py2016

    Posted

    Lovely of your doctor to just leave you wondering..

    a diagnosis of Facial Neuropathy is not the same as Trigeminal Neuralgia and it is important to know which one it is since the usual medications for Tn can possibly make Facial Neuopathy worse which may be why your doc has not prescribed anything. I think you need more information including why the doctor has made that determination (remember, they generally have further knowledge on the subject and he/she might have just neglected to tell you)  I think you need to go back with a list of questions that you would like answered and if you then still have any doubts, ask for a referral to a Neurologist.

    • py2016
      py2016 Valkyrie

      Posted

      Thanks, I think I will go back.  It worries me that there may be an underlying cause that should be ruled out.  
  • justjane37
    justjane37 py2016

    Posted

    You need to go back to your doctor. Ask for an mri/mra to rule out ms or a tumour and you need to see a neurologist. TN can get a lot worse so you should move forward and have things in place in case it does.

    Trigeminal Neuralgia is caused by a blood vessel or vein compressing the trigeminal nerve. Trigeminal Neuropathy basically just means neuropathy of unknown origin. Considering your DR hasn't done any tests he or she cannot make that diagnosis.

    The medications used for both are the same. Anti-convulsants Tegretol or Neurontin are first line treatment. Tricyclic anti-depressants such as Amitriptyline or Nortriptyline can also be helpful for some people. Where the diagnosis becomes very important is in the invasive procedures used for TN--they will not help neuropathy and can make the pain worse.

    TN is not a death sentence. Every single one of us is different. Many of us are able to find medication that helps the pain and allows us to live normal, productive and happy lives. I have had TN for ten years. I work full time and have a beautiful family. Yes, the pain can be out of this world but there are ways to cope with it and there are many options for medication.

    I hope that your pain remains mild and that you don't need to make all of those decisions....but take it seriously and find a better DR

    • py2016
      py2016 justjane37

      Posted

      Hi justjane,

      Thank you very much for replying to my post. I have made an appointment and if I still get little back, I will definitely go in search of a better doctor! I've also made an appointment with the optician (just to cover all bases!)

      All the best,

      p

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