Posted by Nancy on February 03, 1999 at 17:22:27:
I belong to another group (Trigeminal Neuralgia board) besides the cluster board here, I'm a cross between the two kinds of pain.
There isn't much known about TN either or research done, so one lady started in her kitchen the TNA (Trigeminal Neuralgia Association) in 1990. Still works out of there!
They have gotton doctors and dentist involued and even have a board of directors!
They send info to doctor and dentist conventions around the country about TN (facial pain). The Association has developed programs and activities that provide info, mutual aid, support and encouragement to people with TN. The organization seeks to serve as a resource and info center, to centralize current data and medical efforts for effective treatment and cure of this less known facial pain. ALL out of this lady's kitchen!!
It has grown, that in the last 4 yrs they have had two conventions themselves where doctors and dentist came to talk! They are getting out the word!!
They are also now starting a Patient Registry of people who are affeted by TN, who they are, what meds helped, what didn't, what surgery helped/didn't ect ect. all because of one lady and her kitchen!
So there has to be something clusterheads could do if we put our ackin` heads together!!