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Wednesday, September 25, 2013

TRIGEMINAL NEURALGIA (tn) FACT SHEET

1st International Trigeminal Neuralgia Awareness Day on October 7th 2013.

Monuments and Bridges throughout the globe will turn teal for the day (teal is the color assigned to tn)
The Oamaru Opera House in New Zealand, a falls in Canada, the Boston Zakim Bridge, Terminal Towers of Ohio and The Mid Hudson Bridge New York among others..

Sufferers of Trigeminal Neuralgia (TN) are living with what is called "the worst pain known to man" and "The suicide disease".
The trigeminal nerve is a cranial nerve that gives sensation to the face.

When someone develops trigeminal neuralgia the sensation becomes pain. This pain can effect certain parts of the face. For most people it is only one half of the face that is effected but for others it can be both sides.

The majority of patients have pain that is in the jaw and mouth area. Often they are misdiagnosed and have extensive dental work, including multiple tooth extraction which is of no help in this disorder. Other patients may have the pain in the middle of their face, forehead and eye area, in both, or in all three.

For many victims the pain comes out of the blue, the pain often described as a stabbing sensation, electric shock, a lightning bolt through your skin. The pain usually lasts for only a few seconds to several minutes. There is no visual evidence of trigeminal neuralgia, such as swelling or redness. Diagnosis is reliant on the description and area of the pain.

Age used to be a determinate because it is more common in women over 50 but it can be found in all ages, including children, and in men as well as women.

Treatment usually begins with anti-convulsants which may stop or reduce the pain. If these do not work there are a number of neurosurgical options but these often carry a high degree of risk/side effects.

The majority of people with this disorder live with some level of the pain for all of their lives. For others it is not only debilitating but disabling.

Because it is considered a 'rare disease" there is a serious lack of funding. As a result there is still no agreed upon cause. The lack of financial resources also means there is a dearth of research into finding a cure.

The lack of funding also means there is no accurate data on the number of sufferers globally. It is estimated that 1 person in 15 -20,000 has trigeminal neuralgia and 4 to 8 million sufferers worldwide.

TRIGEMINAL NEURALGIA AWARENESS DAY, October 7th 2013, is a day to not just raise awareness, but to raise money for research as well through the selling of teal ribbons. These are availale for sale at http://www.tnnme.com/tn-awareness-day-ribbon.html. The profits are to be donated to The Facial Pain Research Foundation’s research efforts for a cure of this devastating disease and to TNA-The Facial Pain Association’s awareness efforts.

7 comments:

  1. Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam

    ReplyDelete
  2. Love ur blog .i to I'm a suffer of Tn for about 8-9yrs can't recall when I first got it. Meds make forget u see.will meds or pain one or the other. I decide to start a blog also just to keep my mind off the pain and misery of my daily struggles I go throu.take ALOOK at my blog if u like marinastnstory.weebly.com I'm going to follow u if u don't mine

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  3. Hi Carol- Incredibly useful post. Perhaps we can open up a dialogue about your experience with Tn? I can be reached at mtrucillo(at)recallcenter(dot)com. Thanks!

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  5. Just stumbled onto your blog. I've been dealing with chronic pain for 7 years and was diagnosed with Small Fiber Neuropathy two years ago. I take Gabapentin (anti-convulsant) it works a little, but still have to take opiates to ease the pain. www.myneuropathyandme.blogspot,com

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