TNNME: TRIGEMINAL NEURALGIA and ME
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  • Intl TN Awareness Petition
  • Trigeminal Neuralgia Awareness
    • TN/FP Resources >
      • TN: Working Together >
        • United States Resources
        • Ireland Resources
        • United Kingdom Resources
        • Australia & New Zealand Resources
        • Netherlands Resources
        • Finland Resources
        • Canada Resources
        • Brazil Resources
        • Why Does Pain Get Worse When a Storm Is Coming?
        • TN & Social Security Disability Help
  • International TN & FP Ribbon
    • Countdown Clock
    • Intl TN Awareness Videos
    • Intl TN Magazine
    • Poems by Intl TNers
    • Cherokee Hat Trick by Brian Whitaker
    • Intl Arts 4 a CURE
    • Photos of TN & Facial Pains
    • Author Brian Whitaker: Going Down Short Story >
      • The Pharmacy by Brian Whitaker
      • Gabapentin
      • Shakespeare My TN Buddy
      • Having a Good Time-TN Version
      • 1126 Tomcat Way Full GM Edit
      • Author Brian Whitaker: The Rat
      • There's an elephant on my face
      • TN The Pain Awakens
  • TN Awareness Products
  • What is Trigeminal Neuralgia?
    • Facial Pains Disorders
    • Battle Scars of TN and FP
    • Research 4 our CURE
    • Stop It Coffee For A Cause
  • 2022 Light Up Teal 4TN
  • 2021 Light Up Teal 4 TN
  • Our 2021 TN Day
  • 2020 Light Up Teal Trigeminal Neuralgia
    • Lighting Request Info
    • Trigeminal Neuralgia: Why Light Up Teal?
    • Our 2019 TN Awareness Day
    • 2018 Intl Light Up Teal
    • Our 2018 TN Awareness Day >
      • 2017 Light Up Teal 4 TN & FP
      • 2016 Light Up Teal 4 TN
      • 2016 Oct 7 Intl TN Day Events
      • 2016 Intl TN Awareness Day Events
      • 2015 Light Up Teal
      • 2015 TN Day Photos
      • 2014 Light Up Teal
      • Oct 7th 2014 Intl TN Day Photo >
        • 2013 Light Up Teal
        • Betsy Alexander's TN Story
        • Artist Tara Shuey Story
        • Maureen Stone Story
        • Artist Tara: Loved one’s perspectives…………
        • Miriam Fraser's TN Journey
        • Honoring the Taken
        • Rebecca Thorpe Story
        • Nikki Samuel Story
        • Holley Pesina TN Story
        • Susan Wiffill Story
        • Daniel R. "Bob" Snodgrass
        • Frank Skoviera Story
        • Kristina Pelly-Filocamo Story
        • Lagi Leau Story
        • Karen Brigham Story
        • Jennifer Rodgers Houghton Story
        • Dawn Raye Winner
        • Ron Blair Story
      • 2016 Race to Save Face
      • Children & Teens with TN
  • TN: Media Center
    • TN Proclamations
    • Open Letter: Dentist and Oral Surgeons
    • TN & the ER ROOM
    • Open Letter: ER DRs
    • AN OPEN LETTER TO DOCTORS
  • To WHO
    • Hello WHO >
      • TNNME (Toni) Story
      • It's ME on TNnME 10/7/2017
      • 9/21/2016 TNnME Press Release
      • Living in the moment
      • My TN Symptoms
      • Hormones with Trigeminal Neuralgia
      • Trigeminal Neuralgia and Me
      • Cluster Headache Links
      • (CH) Abortive & Preventive treatments
      • Cluster Headache
      • Contact Form
  • Be Strong
TNNME: TRIGEMINAL NEURALGIA and ME

Trigeminal Neuralgia and Me written by Toni Saunders

“Rose is a Rose is a Rose” was written by Gertrude Stein as part of the 1913 poem Sacred Emily

This page is dedicated to my Mother, Rose
Having a lifetime of pain and hurt with the balance of abundance and blessings she still endures.  

My invisible illness is Trigeminal Neuralgia or TN with Cluster Headache. For years I was complaining that my head hurt as if someone was squeezing my brain.  In July 2010 I had an episode that for a brief moment I thought I was having a stroke because the right side of my face started pulling inwards.  Thank God it went away as fast as it came.
 
After my MRI along with other test they diagnosed me with Trigeminal Neuralgia and because of other symptoms they also said I have a syndrome called Cluster headache.Cluster headaches are characterized as a chronic headache that recurs repeatedly during a period of time called clusters. A person experiencing this headache often feels excruciating chronic pain on one side of the head, often behind one eye. This happens when the main facial nerve called the trigeminal nerve, which is responsible for feeling sensations like pain, is activated. The activation of this nerve causes severe chronic pain and stimulates other nerves in the face that trigger the other symptoms commonly associated with this type of headache. Cluster headaches are a condition in itself, meaning there are no underlying conditions, brain tumors or aneurysm that can cause these attacks. The real cause of the trigeminal nerve activation is still unknown, but studies have shown that this has something to do with the part of the brain that regulates our sleeping habits called the hypothalamus. 

 Now the funny part of this is that TN triggers CH and CH triggers TN.   Doctors believe according to my medical records/complaints I have had this illness since the early 2000 and it is progressing over time.  That is when I was told by a very smart man that I needed to adjust my lifestyle and manage the illness instead of the illness managing me.

Everyday there is an adjustment I have to make.  Not to do anything spontaneously because basically I have to live moment to moment.  The weather is my biggest trigger (wind, rain, cold air, snow), then noise (different tones) and sometimes light along with jerky movements.  The little things like brushing my hair, applying make up or eating dinner, is it going to be painful today?

Trigeminal Neuralgia has taught me that I can deal with a lot more pain than I would have ever thought that I could. You don’t need to think everyday about having a condition that will contribute to chronic pain every day for the rest of your life. You need to take one moment at a time.  We live one moment to the next.  Everything that happens is in this moment.  Why should I stress or worry about tomorrow, next month or next year?  Those moments are not here yet. I live now in this moment.  I work now in this moment. I will deal with Trigeminal Neuralgia and Cluster Headaches in this moment.  I will love in this moment.

Some point in our lives as we get older we will have an illness or conditions that requires us and our family to adjust to a different life style. That will be the situation at that time.

Right now 2014 there is no cure, but things change everyday! 


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