Trigeminal Neuralgia Anyone?

Discussion in 'Off The Beaten Track' started by Rob, Jul 20, 2010.

  1. Rob

    Rob Beach Bum

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    Since Friday, I have been having intermittent stabbing pain where my jaw line meets my ear on the left side. I have TMJ, but I am not having a flare up - no pain in the jaw, no locking, no pain inside the ear, and no dental issues. Doesn't feel the same at all as a TMJ flare up. I also have infrequent migraines, but they are accompanied by aura and it isn't like that either.

    The pain is like an electroshock to the face. Lasts a few seconds, stops, comes again every 10-30 seconds. Then it will stop for some random number of hours -- it started Friday night around 8 pm, stopped about 6 pm Saturday, started again in the middle of the night Saturday, stopped around 9 pm Sunday night, started again in the middle of the night Sunday night, lasted till 10 am Monday, stopped till 11 pm Monday and has kept up ever since. Can't really tell if the stoppage is Advil-prompted - at first I thought it was, but now I have taken 5 Advil since 11 pm last night and no relief.

    My doctor has been on hiatus between practices and was supposed to be up and running at her new practice 2 weeks ago. It is a new office of a multi-location practice. I called and the new office is postponed so she won't be back till August 2 at a different location. I hate my doctor's old practice, and I work near a medical building so I called 19 doctors all of whom are not taking new patients. I called my doctor's new practice to see if I could see someone at a different office till she got back and I was told I need to wait for new patient processing to call me back. I guess a new doctor at the old practice is a last resort, but they no longer accept any medical insurance and they double bill - which is the reason my doctor left.

    My internet searches all come up with one thing - Trigeminal Neuralgia - aka "the suicide disease" because it can be intolerable. It all fits, my age, the pain description, the fact that I had a couple of isolated pain shocks to the eye a few weeks before this started - a typical precursor/warning sign. Sounds like I will need an MRI and some tests to rule out tumors and MS. Treatments include anti-convulsants and weird sounding surgical procedures, but while I am seeking out a referral, there are some homeopathics like B complex and accupuncture. I will try anything at this point, and I figure those can't hurt much if I get a different diagnosis. If anyone knows anything about weird facial pain and has any recommendations on what makes it better or worse, please post!
     
    Last edited: Jul 20, 2010
  2. soxxy

    soxxy Guest

    Why wouldn't you go to the emergency room? This may be something more serious than you can investigate on your own.
     
  3. BlueRidge

    BlueRidge AYS's snark-sponge

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    geez Rob that sounds terrible. I hope it turns out to be something you can easily treat.
     
  4. Gazpacho

    Gazpacho Well-Known Member

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    If it's trigeminal neuralgia, it's not a case for the emergency room.

    Rob, I'll PM you.
     
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  5. Rob

    Rob Beach Bum

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    I only go to the emergency room if I am bleeding, doubled over, or have been in a car accident. Definitely not if I can still go to work, which I can. This comes and goes and feels chronic, not acute.

    Thanks Gazpacho.
     
  6. Norlite

    Norlite Well-Known Member

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    This interests me as I also have TMJ and have suffered on and off for years (not lately though)


    Gazpacho, could you post for all of us. If it's too personal, then just a description or overview without the personal info?

    thanks.
     
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  7. Rob

    Rob Beach Bum

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    Last edited: Jul 20, 2010
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  8. Rob

    Rob Beach Bum

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    Went to Dr. - told him about my symptoms, told him I have TMJ. Didn't lead him into any particular diagnosis.

    He came back with a diagnosis of TGN. Sigh. Still waiting for some more test results, but ah, well, now I have meds.
     
  9. BittyBug

    BittyBug Kiteless

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    Sorry to hear that, Rob. Are the meds helping?
     
  10. Japanfan

    Japanfan Well-Known Member

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    What a harsh condition to dead with, Rob. Hope you're finding some relief?
     
  11. Rob

    Rob Beach Bum

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    Yes, the meds are really helping. No lightning bolts or ear-zings for 2 days! So far, so good - just a little drowsiness at first, but I seem to have gotten used to it. No nausea, double vision, etc. And I am on a really low dose which is good. I have to get regular blood tests so I will see about that in a few weeks.
     
  12. BlueRidge

    BlueRidge AYS's snark-sponge

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    Glad to hear it is helping, Rob!
     
  13. StonewshMullet

    StonewshMullet Well-Known Member

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    My Mother has suffered from this for 20 years. I called her and read your message and she said it sounded familiar but when she is under attack she can't talk, eat or function. None of that homeopathics stuff really worked. She did say that a pepper cream she puts on her face helps but they only thing that really works is tegretol.
     
  14. Meredith

    Meredith what a glorious day!

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    I'm happy to hear the meds are working, Rob. Will you have to keep on taking the medication, or will your m.d. try to wean you off of it after a spell?
     
  15. Gazpacho

    Gazpacho Well-Known Member

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    I don't know what you mean by "wean off of it after a spell", but some medications can be taken on an as-needed basis when the attacks happen. Other medications can't be taken as-needed, so you have to take them even if you're not experiencing an attack at the moment. An as-needed medication is preferable all else equal, but it depends on what the patient responds to. TGN is also a lifelong condition unless the patient undergoes surgery and that surgery is successful.

    Rob, did you get the book I PMed you? I can't recommend it highly enough.
     
  16. BittyBug

    BittyBug Kiteless

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    Great news! :)
     
  17. Rob

    Rob Beach Bum

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    I did order the book - it is on its way. I have read a lot of the available excerpts online and a lot of the stuff on that website you sent.

    My prescription is currently "as needed," and I had a nice long natural break from the severe pain from Thursday morning to Friday evening so the Dr. told me I could wait and take it when it came back. I was still feeling it a little, but it was much less frequent and more like a pin prick than an electroshock. I can take the pin prick especially when it is like 2-3 times every hour or two instead of every 10 seconds. When I felt a couple of strong jabs in quick succession on Friday late afternoon/evening I took it, and the jabbing stopped in a few hours. Which could have been just natural or it could have been the meds starting to work. I tried just taking it once a day instead of twice, and that worked till Monday afternoon when the jabbing broke through again so I am going with twice a day right now to give myself time for it to calm down.

    Based on what I have read so far TGN affects everyone differently - it depends on how tightly the vein is wrapped around the nerve and it depends on where the pain is located. People can have breaks from the pain for hours, days, even years and then it can come back usually stronger the next time if the vein tightens. Also, lots of people feel the pain in the eye socket, teeth, or cheek while mine is behind/under my ear at the jaw line. I felt a couple of isolated jolts to the eye before this started (likely a warning sign) and believe me, that would be much more disruptive to life and just plain old freaky than the pain behind my ear. So I'll consider myself lucky if it stays where it is.

    Because I am not an epileptic, I am free to cut back or stop using the med to see if the pain is still unbearable or not. Knowing me, I will forget to take it, so we will see what happens then. If this "as needed" med stops working, I may need to use the same med continuously. If I use it continuously, the doctor will likely need to increase the dose over time, but of course that increases the chance of side effects. If it stops working altogether, there are several other meds to try. And then several surgical procedures ranging from less invasive methods of deadening the nerve to drilling a hole in the skull to try to move the vein away from the nerve and put a little cushion in between to stop the rubbing/pressure. I am not sure that I would elect to kill the nerve and would need to do a lot more research on that, but we are a long way away from that.

    Anyway, it is a lifelong condition, but some people have had 5 year breaks from it. Maybe I will get lucky.