Be on the Lookout for an announcement!

This site will be migrating soon. Be on the lookout for the announcement. There will be a change though. This community will be part of a new community (that also includes TN)called Living with Facial Pain Here is a part of the introduction to that community:

"Chronic facial pain syndromes effect as much as 1% of the population. Two of the better known conditions but among the rarest are Trigeminal Neuralgia and Glossopharyngeal neuralgia. Many other Facial Pain Syndromes that cause similar symptoms and Chronic pain have been classified by numerous terms. In past the few years pain specialists have attempted to classify these syndromes by a number of names including atypical facial pain, Type 2TN, Type 7TN, atypical trigeminal neuralgia (ATN), trigeminal neuropathic pain (TNP) and atypical facial neuralgia (AFP). Most recently the term Persistent idiopathic facial pain (PIFP) has been used to describe facial pain that is usually of long duration, lasting most of the day (if not continuous), is unilateral, and is without autonomic signs or symptoms. It is described as a severe ache, crushing sensation, or burning sensation. There simply is no consensus, even among practitioners (We had a very dismayed member for example, who was told by her “famous” facial pain specialist that there is no TN2.

While this site continues to provide Support for TN and GPN, we have come to realize that many other facial pain patients attempt to deal with their disease within the GPN or TN communities. While there is much in common in dealing with the day to day challenges off Chronic facial pain, there is often frustration among the groups when it comes to treatments both drug, surgical and other interventions. For that reason, we have expanded our opportunities for continued Peer to Peer support to include other Chronic facial pain syndromes. We have chosen to lump them into the Persistent idiopathic facial pain category."

Even today I see on both TN and GPN communities frustrated member trying to fit in to one of these diseases. I also see the frustration of the members of these communities dealing with the "classic disease" trying to support these folks. HOPEFULLY the new community can serve all three groups better by sharing with each other what we have in common in daily challenges and frustrations and at the same time serve the TN and GPN communities. You will still have the specific discussions and discussion areas you have now (they will come over in tact) but you will have the experice of mnay new facial pain patients.



I suspect there is much overlap, too, and that muddies diagnostic waters. This seems like a sensible path.

Hi TJ,

Whilst its really sad that we'll be moving home, I'm sure everyone understands we need to because the current platform is becoming so unreliable. The community are probably curious about how this will look and feel and what they have to do to move over. Can you explain what the key differences between the sites will be? I know a few members already are active on the LWTN community too - not unusual to have more than one neuralgia - both Mary and I are great examples.. Also, high level activities and timeframes so people will know when to expect changes coming through and the next steps would be really helpful. Thank you for all the work you are putting in to get our new home up and running for us.

All the best,


Hi, Smiley

Seenie from ModSupport here. As you can imagine, we're scrambling here -- we're like those proverbial swans: all calm on the surface and paddling like mad underneath!

The new site will look similar to the old site in many ways, and will work ... well, the way websites work. With the new "home", we're hoping that the whole system will be more stable and predictable than the old platform has become. We've tried to make things as intuitive and as self-explanatory as we can, and it will continue to be a work in progress for a while as we refine things. But when "it" happens, if there's anything that doesn't seem to work properly or you can't figure out, just message us and we'll be there.

I've been away on a holiday, so now that I'm back I will around more regularly, and will try to get back to you a bit more quickly than I have.

Stay tuned and keep in touch!