What is Trigeminal Neuralgia and ME?
My name is Toni Saunders and I live with Trigeminal Neuralgia and Cluster headaches.
After ten years of weird and unexplainable symptoms of facial and head pain the Doctors finally diagnosed me with Trigeminal Neuralgia and Cluster headaches the year of 2010.
Trigeminal neuralgia (TN) is a very painful disorder of the portion of the fifth cranial nerve (trigeminal nerve) that supplies sensation to the face. It is characterized by recurrent electric shock-like (paroxysmal) pains in one or more branches of the trigeminal nerve (maxillary, mandibular, and/or ophthalmic branches), each supplying a different portion of the face.
Severe facial pain can last from a second to 15 minutes or longer; some individuals may have up to 100 lightning-like bursts of stabbing pain in a day. Although remissions are common, trigeminal neuralgia usually is a long-term condition. It can be triggered by such stimuli as heat or cold, windy hitting the face, chewing, yawning, or talking. Because the sudden, sharp pain causes the individual to wince, the condition is known as tic Douloureux or painful twitch.
The Doctors told me there is no cure for trigeminal neuralgia and that it progresses over time. Googling the disease and seeing time after time that trigeminal neuralgia nicknamed the suicide disease. It scared me to death. I would not wish this pain on anyone. It is so painful that some have taken their own life to make their pain end. We must let others know there are other options. We need a CURE!
Researching trigeminal neuralgia first frightened, and then frustrated me. I was trying to understand the pain that was changing my world.
Realizing information, support, and awareness for the TN patients were limited, I decided to do something about it.
I formed an on-line group TNnME, pushing across international borders to bring more awareness to the disease, touching lives of people as far away as Canada, United Kingdom, New Zealand, and Ireland.
- To bring awareness to those with and without Trigeminal Neuralgia and Neuropathic facial pain disorders through social media.
- Asking the World Health Organization (WHO) to add Trigeminal Neuralgia to their “Health Topic List". Adding Trigeminal Neuralgia to the health topic list of illnesses will expand awareness, grant access to further resources, and create opportunities for funding and research.
- Promoting the Facial Pain Research Foundation in hopes to find a cure.
- To be a source for those that suffer with facial pain and Trigeminal Neuralgia to give them space to be able to vent and share their stories, letting one another know they are not alone.
We came together to create its first teal awareness ribbon for trigeminal neuralgia and facial pain disorders.
We came together to create the first Light Up Teal 4TN in 2013 Trigeminal Neuralgia Awareness Day on October 7th of every year.
A Big THANK YOU to Kathy Somers Sarah Heavey Brenda Sharp Mandi Ginn-Franz for your dedication year after year on lighting the skies Teal!!
Please let others know they are not alone on this journey. Please bring awareness to Trigeminal Neuralgia.
A BIG thank you to all TNnME Members, Friends, and Supporters for Raising your voices, sharing your stories, for the laughter and tears.
We come together to tell our stories and share our truths.
Do you know TNnME Popular Pages
- Here is where you can buy our Trigeminal Neuralgia & Facial Pain Disorder Awareness Ribbon
- If you're interested to purchase Trigeminal Neuralgia Awareness Products please visit our TN Awareness Store on Zazzle!
- Have you or someone you love been diagnose with Trigeminal Neuralgia? Go here for What is Trigeminal Neuralgia?
- Check out our page on how understand the different Facial Pain Disorders
- No donation is too small. You can help push research for a CURE for Facial Pain Disorders by going to our Research 4 our Cure donation page.
- Do you love coffee? Purchase Stop It Coffee which all proceeds go to the Facial Pain Research Foundation in the memory of Cori Murdoch.
- Did you know children and teens also live with the pain of Trigeminal Neuralgia and Facial Pain Disorders?
- Did you know we have Proclamations for Trigeminal Neuralgia Awareness Day?
- Did you know that the Gallixa may be able to soothe some of your facial pain along with other body pain?
- “Laugh Your Face Off,” a comedy fundraiser to benefit The Facial Pain Research Foundation
Our stories about living with Trigeminal Neuralgia and Facial Pain Disorders
- Toni Saunders Story
- Miriam Fraser Story
- Susan Wiffill Story
- Lagi Leau Story
- Ron Blair Story
- Betsy Alexander Story
- Rebecca Thorpe Story
- Daniel R "Bob" Snodgrass Story
- Karen Brigham Story
- Cori Murdoch Story
- Artist Tara Shuey Story
- Nikki Samuel Story
- Frank Skoviera Story
- Jennifer Rodgers Houghton Story
- Honoring the Taken
- Maureen Stone Story
- Holley Pesina Story
- Kristina Pelly-Filocamo Story
- Dawn Raye Winner Story
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