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