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Our 2019 International Trigeminal Neuralgia Awareness Day!
Showing support - Giving support - Spreading Awareness - Wear Teal - Telling our Stories!
Elizabeth Eyre - October 7th is Trigeminal Neuralgia Awareness Those of us with this diagnosis are fighters. We fight to go to work, have fun with our families and to function as a person without it would. We don’t stop! Every day is a fight to have quality of life. There is a certain level of PTSD that comes with this because at any moment it can hit. You can have 5 great days or months and then ZAP! It hits and renders you speechless and dazed. Usually a few moments of quiet and not talking is enough to get me thru, others need something different. No one is the same. The “flares” can last seconds or days. While in a flare I feel like a hot poker is jammed into my cheek, like a lightning bolt is going thru my eye, like I have a thousand hot needles pricking my tongue and lips. There are so many triggers for people. Air conditioning, fans, laughing, wind, smiling, chewing, touch, and the biggest threat for me- weather changes are all triggers for me. Thank you for reading this! Pictures of me are on a good day and on day 5 of a flare “bender”. You’ll notice the color change of my skin. Sometimes it turns red and it always gets puffy. Please join me in my #fightforacure so we can #beattrigeminalneuralgia
Oct 7, 2019 international Trigeminal Neuralgia awareness day. Today I will give you a tiny snapshot into parts of my life that I kinda sorta mention but are always with me. I am a chronic pain warrior. I live with the third most painful disease known to man. I take 1700 mg of oxcarbazine daily to feel sort of human. I also take Topamax, Nadolol, zomig, and Emgality all for this condition and for my chronic migraines which are a result of this rare disease. I also have a medical marijuana license and am an mmj activist. Today I am on my way to my Neurophysicist in NYC. Don’t you all go to one too? Yet I remain mostly upbeat and positive even when I’m in so much pain. I can do Zumba in horrendous pain. You would not believe the things I can do. I have been in pain my whole life. I did not realize that everyone does not have pain too. Do not feel sorry for me bc I refuse to ever feel sorry for myself. I am a bad ass warrior. But as badass as I am glossopharyngeal neuralgia sucks and I wouldn’t even wish it on my ex husband. Lol. So, today I wear teal for all of my fellow tn and facial pain warriors. Press on. While there isn’t currently a cure there is always hope. #facethechange
— with Toni Saunders at Aboard NJ Transit.
— with Toni Saunders at Aboard NJ Transit.
Had my face painted again this year to help raise awareness a lot of my family and friends said it was a good learning tool to be able to see the Trigeminal Nerves. We may look ok on the outside but it’s hard to explain the level of suffering that comes with this condition #trigeminalneuralgia #trigeminalneuralgiaawareness
#TN I hope you all had a low pain day
