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???
1 like, 18 replies
colin04561 amanda60033
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.
amanda60033 colin04561
Posted
I know, it's pretty crazy. Essential oils, anything that has peppermint in it, has worked at times too if I spread it under my nose and breathe it in.
susan33651 amanda60033
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.
amanda60033 susan33651
Posted
Thank you, yes. I've seen several and had two sinus surgeries before finally getting the right diagnosis of TN. Got a straightened septum though👍😊.
sam_90350 amanda60033
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.
amanda60033 sam_90350
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!
sam_90350 amanda60033
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.
amanda60033 sam_90350
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!
Notrightnow amanda60033
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.
sally90 amanda60033
Posted
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
CoreyT sally90
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.
sally90 CoreyT
Posted
Good Luck
ibrahim57343 amanda60033
Posted
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
justine20681 amanda60033
Posted
phayeXI amanda60033
Posted
I also use peppermint oils under my nose, on my temples, forehead... otc lidocaine even at times. It helps, even if very little.
I hit a very bad depression over the pain and what it has done to my life.
I always liked to sing, so a friend suggested I start singing again to help battle depression.
I downloaded an app called Smule to play around on, but once I started really getting into it, I realized it helped relax my facial muscles. Idk why or how. Maybe because the burning and tightness causes me to clench my jaw too tightly at times? Who knows, but it works for me.
It is by no means a long lasting approach, but if you and several others here find relief in eating (chewing or sucking on Halls for example), it may be the act of having to relax your jawline and make it do the opposite of a “clenching” motion.
Because I found out this helped me, I have purchased different items designed to “elongate” the jaw for aesthetic purposes. Only for me, instead
of aesthetics, it functions as a means to force me to relax my jaw.
My atypical pain is burning, tight and constant. Often the tension ends in a headache or worse, but sometimes that last ditch effort of making my jaw relax, can make all the difference.