Atypical tn, weird pain relief

Posted , 13 users are following.

I've had atypical tn for over 6 years and I've looked over so many of these boards over the years, but don't remember ever seeing anything about getting temporary relief from things like mints, halls, or even eating. While the movement in my face can make my pain work, I've always had a favorable reaction, some pain relief, when I have a halls or mint in my mouth, or even eating some times. None of the doctors seem to understand this, in fact I was sent down the endocrinologist path years ago, which obviously turned up nothing. I just think that tn, especially type 2, is so misunderstood. There are symptoms and ways it comes on or reacts that doctors just don't understand. I've had no relief from mvd surgery or the cyber knife and I'm currently trying acupuncture. Thoughts anyone???

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  • Posted

    This is completely contrary to ANYTHING I have ever read. Your symptoms are certainly atypical. I wish I had something constructive to add other than my awe at your method of relief but I don't.

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  • Posted

    Hi,

    Have you had a consultation with an ENT specialist? It's just that the relief you're experiencing from the peppermint etc would suggest that there may be an issue with your nose or sinuses. It might worth pursuing this.

    Good luck.

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  • Posted

    I'm the same when eating I get relief.but as soon as I stop the pain comes straight back.i think it's because the brain is concentrating on the food.

    I will try the halls mints..thank you so so much for idea.

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    • Posted

      It's so crazy right?? I'm so glad to hear someone else has relief when eating too!  I never thought about the brains focus being elsewhere, very interesting.  I hope the halls or peppermint gives you some relief, please let me know!

       

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    • Posted

      I have had atypical facial pain 4 years now.My pain is on both sides of my face.my cheeks jaw and gums at the back molars and it's so hard to describe the pain to some one because the pain symptoms change so much.and it's constant pain.some days good and some days I just want to end it. This week has been ok.four out of ten. Where is the pain on your face? Thanks for replying because I felt I was the only person on earth who found eating a pain relief.

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    • Posted

      My pain is on the left side, starting from the edge of my eye, the corner where my eye and nose meet, and it goes out to the left side of my face, through my cheek, into the upper part of my mouth, and in my ear canal. I am relieved that someone else gets pain relief when eating because I felt like a crazy person telling people that!  I'm so conditioned that it takes away my pain, I reach for food whenever I'm in pain, which is all the time, to try to get some relief. I have eaten so many halls, probably in the thousands, and I'm lucky that it does provide some pain relief but I hate them now, ugh, cannot stand the taste. I'm sorry that your pain is on both sides, I can't imagine having that, and a 4 pain level is bad too. If my pain gets up to a 4 or 5, I'm usually in bed. This is such a terrible condition, there really are limited things to turn to for help and I've found that I know more about TN than a lot of doctors, unless they are specialists. We are our best advocate. Good luck to you!

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    • Posted

      As far as reaching for food when you're in pain, I've read that some foods are good for nerve healing and some interfere with it.    Some of these recommended foods keep you full most of the time.   You might want to try some research on Google.   I try to learn more and more about it between  episodes of itching.  

      I have my own OTC meds that I use which I'm not sure I should mention here since my care providers do not seem to approve.   

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  • Posted

    Hi Amanda,

    I have had atypical and typical TN for 8 years.  I often cannot eat or drink except ice cream to eat and milk to drink, not only can I eat and drink but they ease the pain.  No other food or drink works.  Cold full cream milk is the best, so I feel it is the fat content in both that helps but why I cannot fathom.  I also find the weather really affects TN, much worse when heavy cloud and stormy.  I have tried acupuncture with no success and cyber knife with a bit of success, different pains and slightly easier to manage.  I have MS which has caused the TN.  

    Wishing you good luck with acupuncture do hope it works for you.

    Sally

     

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    • Posted

      I'm baffled by TN and the variety of triggers and reliefs... on the one hand, I completely agree that stormy/cloudy or windy weather can cause my TN to act up, but on the other hand, the thought of putting anything cold near my face during an attack of TN pain is terrifying! In fact, i find that even a strong air conditioner blowing cold air is enough to trigger an episode. When I first started to experience facial pain I found that a hot towel over my face would, occasionally and mildly reduce the level of pain. I have since bought a facial steamer that yields similar results at the flip of a switch. Again, I don't think the heat/steam is really remedying anything, but it helps me deal with the pain sometimes.

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    • Posted

      I agree Corey, I find a very light touch to my face will bring it on but when bad a warm towel pressed quite hard against it seems to help sometimes.  A breeze, wind, air conditioner often brings TN on.  I was advised Mindfulness of whichI was very doubtful but I now think it might be worth a go.  That was from Prof. Zacrzewska one of the worlds leading experts on facial pain, she has a facial clinic at UCL London.

      Good Luck 

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  • Posted

    Hi amanda

    Iam 31 male just started to have atypical TN at all started on high stress 4 weeks ago , ive notice eating and realxing works for me i have a burning sensetion and nerve pulling on my face it was on my left , just today it has moved to my right its driveing me crazy pleaseee help

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