Friday, October 07, 2016

October 7 . . .

 . . . is Trigeminal Neuralgia Awareness Day, and I am doing my part to spread the word.

It is about 5:00 p.m. here and I have spent much of the day reading posts on the Trigeminal Neuralgia Support Group’s Facebook page (it is a closed group and I just wish everyone had access to it.)  Teal was the “designated color” and there were photos of children going to school and husbands and wives going to work wearing teal and helping to spread the word around. But as usual, and sadly, there were entries by sufferers in deep pain, some written off by doctors and employers, some waiting for their next trip to the ER and photos of the swollen and contorted faces of people in the grip of an attack. Research will tell you this condition mainly attacks women over 60, but there were photos of the young, even babies and children, and both men and women of all ages and in many walks of life.

I was also amazed to see a number of public buildings lit up with teal lights to help bring about a wider awareness and understanding of this cruel condition. It is not curable, though medications which are in and of themselves a nightmare of side effects can help and there is surgery which is not guaranteed to last forever even if it is successful. These posts showed the variety of drugs which their writers are using—up to and including marijuana and oxycontin.

It is rare, comparatively, and not one of the “glamor” conditions that appeal to donors. You may even have friends or family at some point of the spectrum.  If you are reading this, do a little homework and check the websites, both medical and anecdotal. This is a well written article by a journalist, written from a patient’s point of view:

I believe this information is worth having and disseminating. It may help you, your family or friends one day.

And remember, Trigeminal Neuralgia is not called the suicide disease for nothing.

1 comment:

Maggie May said...

It sounds horrific.
Pain, especially nerve pain of any kind, is difficult to treat and pain is a very personal thing that isn't easily shared.
My heart goes out to all sufferers.
Maggie x