This is my life with Trigeminal Neuralgia

http://tnac.org/tnac/

October 7th is International Trigeminal Neuralgia Awareness day but every day is awareness day for someone living with TN

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Trigeminal Neuralgia (TN1), also known as Tic Douloureux, is considered to be a rare disease. About five out of every 100.000 people, or 15,ooo people are diagnosed with TN in Canada each year.

It is considered by many to be the "most terrible pain known to man." It is characterized by episodes of excruciating stabbing or electrical shock-like pains which are usually confined to one side of the face but can sometimes be bilateral (occur on both sides). Trigeminal Neuralgia (TN2) is the atypical form of trigeminal neuralgia with constant aching, throbbing, burning pain that never goes away for some. Many suffer from both types at the same time. 

Eating, brushing teeth, talking, smiling, a simple cool breeze across the face, a slight touch or even a kiss on the cheek can trigger shooting pains that drive victims to their knees and may last a lifetime. The intensity of pain can be physically and mentally incapacitating. During an attack of TN, the sufferer will almost always remain still and refrain from speech or movement of the face, so as not to trigger further attacks of pain.  

These pain attacks may occur in quick succession and many times per day and can be difficult to control with medical treatments. Unless you witness someone having one of these savage attacks, you would never know the pain they live with every day.

This is a disease often misdiagnosed, without a cure and very little awareness. Most people have to take a cocktail of drugs or have brain surgery to try and live a normal life. For many the drugs become ineffective for controlling pain or the adverse side affects can no longer be tolerated.

 Surgical options don't work for everyone and sometimes leave them in more pain than before surgery.

Extreme facial pain is not the only aspect of TN. There is also stress, anxiety, loneliness and fear. Fear of many things that most of us take for granted because they can trigger pain.

This sounds like, and is, a very terrible disease for most people to live with but the one thing about TN is that no two people have the same symptoms. That is why it is so difficult for medical professionals to treat. For some TNers, in the beginning, the pain is not constant and the attacks are less severe, requiring little or no meds. Others have the pain controlled by medications or surgery, if not completely than at a manageable level. Some go into extended periods of remission. We don't hear much about these TNers because they are living normal lives, working and doing what most of us take for granted. The one thing they all say, even with their pain free lives, is that they always have the fear of the pain returning.

It is widely accepted that typical TN is caused by compression of the nerve when a blood vessel (either an artery or a vein) lies on the nerve pressing into it. Other causes of trigeminal neuralgia include Multiple Sclerosis, nerve damage from dental trauma, facial trauma and tumors, or demyelination of the nerve (wearing away of the protective covering of the nerve). 

For all of you living with Trigeminal Neuralgia and Facial Pain, especially the newly diagnosed, remember there is hope and it is not all doom and gloom. With the treatment options available today, people are not doomed to a life of pain. Doctors can help manage the pain for most with either medications or surgery. Most of all there is hope, HOPE FOR A CURE.

Scientists around the world are doing research to find a cure for TN and all nerve related facial pain. Organizations, Associations and groups are working to raise awareness and educate so fellow TNers can get the help you need to end the pain.

We need everyone to help us raise awareness of Trigeminal Neuralgia. We need you to speak up for all the TN sufferers and help us fight for more research on this. We need a cure not more drugs. Please help us raise awareness of Trigeminal Neuralgia. Please help us fund a cure through research. 

For Canadians who want to fund research for a cure you can donate to The Trigeminal Neuralgia Association Canada's (TNAC) Search for solutions. http://tnac.org/tnac/donate-to-the-trigeminal-neuralgia-association-of-canada/

The Trigeminal Neuralgia Association of Canada (TNAC) is the only registered charity in Canada that focuses on supporting individuals’ who live with trigeminal neuralgia. TNAC’s mission is three fold: to offer support to individuals with TN through outreach and support groups; to support Canadian research into ways to better treat and manage TN; and to raise awareness of TN. We are a small group with large aims. We run support groups, individual support and counselling, newsletters and webinars and have introduced the fundraising program the Search for Solutions to support Canadian researchers working on Canadian and international projects to bring an end to the pain.

To learn more about Trigeminal neuralgia and other facial disorders

http://www.umanitoba.ca/cranial_nerves/ccndhome.htm

http://tnac.org/tnac/about-us/

Thank you to everyone who allowed their pics and words to be used in this post. 

Suicide Hotlines and Crisis Centres for anyone living with the pain of #trigeminalneuralgia & #facialpain or any #chronicpain

Anyone suffering from the pain of trigeminal neuralgia & facial pain, please find your Crisis Centre Hotline and keep it handy. We all know the pain, isolation, depression and everything that goes with this horrific disease can be very overwhelming at times so please seek help from family, friends, support groups, Suicide Hotlines or your local Crisis Centre when you think there is no way out. Please hang on to the hope of a better day tomorrow with a cure in your future.

Newfoundland & Labrador Crisis Centres and links to each Province in Canada
http://suicideprevention.ca/thinking-about-suicide/find-a-crisis-centre/newfoundland-labrador-crisis-centres/

Suicide Hotlines in the United States
http://www.suicide.org/suicide-hotlines.html

International Suicide Hotlines
http://www.suicide.org/international-suicide-hotlines.html

This is Sami, she lives with Trigeminal Neuralgia. Her letter to The World Health Organization.

This is Sami She was diagnosed with Eustachian tube dysfunction at 10 months old. This has led to 13 sets of ear tubes. When Sami was 7 she had a tumor removed from behind her right ear. It was thought to be a bacterial infection which destroyed her eardrum and required an extensive mastoidectomy.
In 7th grade Sami began having indescribable headaches and face pain. After a last resort referral to a neurologist, Sami was diagnosed with Atypical Bilateral Trigeminal Neuralgia. She is able to control the majority of pain with medication. However she is never pain free. Sami fights through the pain. She chooses the current level of pain over increased side effects of the medication.
Sami is a sophomore in high school. She wears a hearing aid to compensate from the hearing loss she has. She is taking advanced courses and if all goes well she can graduate with her high school diploma and associates degree when she is 17. Sami has dreams of going into the medical field and then going into the mission field to serve those who don't have the same opportunities that she has had with her medical care. She is a well rounded teenager who loves youth group, babysitting and sings on the worship team at church. Sami also has an incredible talent to process her pain through her artwork.
This is what Sami wrote for her school med paper.
Sports med/Health Occ.
24, February 2015
Ethics in W.H.O.
"The World Health Organization (WHO), is one of the largest influences worldwide in the medical realm. As described on the WHO website; “WHO is the directing and coordinating authority for health within the United Nations system. It is responsible for providing leadership on global health matters, shaping the health research agenda, setting norms and standards, articulating evidence-based policy options, providing technical support to countries and monitoring and assessing health trends…” (About). The WHO has such a large job, it is understandable that a rare disease or two may slip away from their notice, and lose the funding they deserve. However, when petitions are sent, and attention is drawn to that ignored illness, and the WHO still chooses to disregard them, what ethical right do they have to choose one illness over another? Even if that illness is rare, it still cause pain, and it still affects people’s lives. It still matters. The ethical dilemma lies in whether or not they have the right to decide which illnesses are the most “important”, and which ones deserve their attention the most.
The rare disease in mention above is called Trigeminal Neuralgia (TN). About 1 in every 20,000 people have TN, however due to lack of education, which leads to misdiagnosis and being undiagnosed, the number is assumed to be greater (O’Connor). There are currently about 45,000 people living in the U.S. with TN, and over four million worldwide, putting TN in the National Organization for Rare Disorders (O’Connor). The International Facebook Group Trigeminal Neuralgia and Me (TNNME) and the Trigeminal Neuralgia Awareness Fighters have asked and petitioned the WHO to add TN to their Health Topics list as well as recognize October 7th as TN Awareness Day. Both groups believe that if they get this support from the WHO, it would “provide education, further research and information, and a better understanding of the debilitating, chronic pain disorder…” (O’Connor). So far the WHO still has yet to recognize any petitions or campaigns by TNNME or the Trigeminal Neuralgia Awareness Fighters, which is leading to lack of education about TN, and an inability to treat and diagnose patients.
My opinion is personally rooted, because I myself have TN. I believe on a first-hand account that the nick name ‘Suicide Disease”, as TN is sometimes called, is an appropriate name for people who aren't able to manage their pain with medications or treatments due to lack of knowledge. I have personally been to three different Neurologists, and even their knowledge was sometimes lacking on the subject. Many of my Primary doctors simply refer to my TN as “migraines”, not understanding that it actually has nothing to do with migraines, but actually the nerve in my face that is deciding to misbehave. I have helped several times make awareness posters to send to the WHO, and hope they do soon recognize TN and help fund research to find a cure. I believe it is ethically wrong that they get to pick and choose which illnesses are to be considered “the most important”, and that there should be a better way of distributing their funding evenly."

Besides this Letter to WHO, Sami has done so much to raise TN awareness by telling her story and letting her pics be used to make posters for WHO and TN awareness. As a result of her advocacy work for TN and her other volunteer work she was accepted into The National Honour Society at her school.

Strong young people like Sami, who have to overcome so much to live a normal life, inspire us all. She wants to raise awareness for everyone who lives with the relentless and horrific pain of Trigeminal Neuralgia. So please do whatever you can to help raise awareness and help END THE PAIN.
To sign the petition to The World Health Organization (WHO) http://www.tnnme.com/

To read about the research being done and donate to help fund a cure 
http://www.facingfacialpain.org/