Crawling on the affected side?

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Hi does anyone experience severe crawling sensation when you TN is in remission. I only get at that time and not when the attacks are happening

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6 Replies

  • Posted

    Patrice, I find that its all part of a continuum.  As the pain is coming, or as it is going, I get 'tickling' around my face on the left side - sometimes up my cheek to my eye, sometimes around my upper lip.  Sometimes I get minor symptoms in between the severe pains and I'm afraid to touch my face, or move too much in case it triggers a full blown attack.  If I'm in remission I don't have any symptoms.  Heather
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    • Posted

      Heather. I say that I am in remission even tho I have tiny pain on my nose when washing face. I had 10 acupuncture sessions and 2 weeks later TN gone. I would nearly die with the pain if I touched my nose or even put it on the pillow.I remember the pain rippling across my upper lip like electricity.What a horrific experience! I also had remission when I broke a hip and was in IC that the pain had gone . Arguments can be triggers as raised voices brought me back to the nightmare world at that time. At present I have no pain for 7months. Best wishes to all of you
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  • Posted

    Oh, that's very interesting. I just got that for the first time two nights straight. I can hardly sit still and have to get up and walk around quickly. It's quite horrid.

     

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  • Posted

    I have all kinds of sensations. I have whole months of very low pain and have had several remissions. Little crawling feelings is something I get. I call it the ant parade.
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  • Posted

    Hi there.

    If it's limited to your face, it is probably a smaller symptom of the TN. During a long bout of remission, i remember feeling a hair across my forehead that was never there. i'd sit at the counter where i worked and keep trying to brush an invisible hair off my face. It was thoroughly annoying.

    However, if it is affecting your entire body, it's much more likely something called akathisia [ https://en.wikipedia.org/wiki/Akathisia ]. i had that too, also during remission, because during TN remission i had migraines. On the other side of my face. That felt like a pole going through my head. For these i occasionally took Compazine, maybe Combid.

    Akathisia is absolutely horrible, far worse than the brushing off of flyaway hair. It is generally a medication reaction. i would suggest you call your physician and tell him or her what's cooking. If you can't sit still and, in its small way, this is agonizing? You may truly need a medication readjustment. The good news is that that will usually stop the problem.

     

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  • Posted

    Hi,

    Not so much a crawling sensation as a feeling of numbness and tingling combined - which I know doesn't make sense, but that's what it feels like! I get that during an attack and afterward for several days. I also get a tingling sensation over my top lip and my upper gum feels 'weird'. I can live with these sensations but when the pain comes I just want to crawl away and hide from the world!

    Best wishes.

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