Atypical Trigeminal Neuralgia used to be found as a sub heading at the end of the Wikipedia Entry of Trigeminal Neuralgia.
Now ATN has its own entry... yipee !
I guess this means the condition has started to turn some heads and get some recognition. Hopefully this will mean further developments in the fight to discover the cause and cure of this nasty infliction
We'll be having a world wide Chat session on ATN from 2-4 PM Wednesday. Bring this link along, Luke, for folks who may not have read your posting. I'll read it and may incorporate it in our Face Pain Info tab.
One more thought. On reading the Wikipedia entry, I find that it is rather incomplete on treatments. I'll do what I can to help flesh out the article and get it connected to proper references.
I have just finished a major expansion including references, for the Wikipedia entry for ATN. All members of the ATN group are invited to take a look and suggest changes or updates:
Our ATN sub-group now ranks #5, the last time I checked, amongst the Google results. It is the only group specifically for Atypical TN patients that I can find on the web.
Yes, I do believe we are making a difference, and I must give Red a lot of credit for that.
My fondest of hopes is that those with the power to fund research will take notice.
Added some more material this morning, expanding the discussion of Atypical Facial Pain as a mis-diagnosis, and Opioids as a recognized therapy with published authoritative guidelines.
The ATN wiki entry reads very nicely! I have to tell you that twenty or thirty years ago, I would have done almost anything to have access to such accurate information. I used to wait weeks, and spend hundreds of dollars to get Medline Searches performed in the 1980s, and these were all sent via the U.S. Postal Service. After many years of requesting articles on PAIN and such things, I actually was being referred to as "Doctor" in the salutations of these letters and on the front of each envelope! I still have some of these old printouts, early statistical data on the Jannetta Procedure, etc.
But way back then, I still had no accurate diagnosis, because the symptoms of Trigeminal Neuralgia were (and still are) very specific. I cannot remember the first time I came across Type 2 TN, or what is still often called "Atypical Trigeminal Neuralgia" but reading today's wiki entry makes a DEFINITE FIT, like a piece of a puzzle, to my condition.
It's always sad to read about those who are just being diagnosed with ATN, but I didn't get this accurate diagnosis until I had actually lived with this pain for thirty years, while I was applying for Total Disability in 2001. So I spent 30 out of the past 40 years without an accurate diagnosis! How much misery I could have prevented had I known what we know today! And the knowledge seems to be growing at a higher rate each year.
I did wish to change one small part of the wiki, given my nearly forty years of experience, so I edited one sentence to begin: "The symptoms can occur in addition to having migraine headache, or be mistaken for migraine alone..." etc. I hope this gets left in there. I definitely have migraines that occur quite independently of the ATN, and while this may be from the same origin, possibly trauma-induced (football), it does require different and often contra-indicated kinds of treatments.
Thank you to all who have worked so hard, and continue to do so, on providing this information. If you ever need help of any kind, please ask. And keep up the great work! Carry On! (jqt)
This morning, the Wikipedia article on Atypical TN comes up number one in a google search on the term “Atypical Trigeminal Neuralgia”. A link to Stef’s ATN Group here at Living With TN is still number five. This represents a very substantial contribution to both the welfare of people in pain, and the community work of Ben’s Friends
Web sites that provide information for specific illnesses or conditions usually begin with good intentions, and as time goes on, several things can happen. People with ONLY a profit motive can sometimes take over a community. Time itself can erode any group or effort. Several years ago, I used the new Google Knowledge or ‘knol’ feature and began to add some information under “Trigeminal Neuralgia” but all of that entry has vanished. The information under the various ‘knols’ out there now is very poorly written, and virtually all marketing. If you feel especially energetic, maybe try adding some information out there! YouTube is another place that I thought had some promise, but as we all know, pain is invisible. Maybe a good topic would be to attempt to list all of these places where information can be disseminated. I’ve listed just a few, and wikipedia of course is under current discussion. What other places might someone be searching for information?