Facial Neuralgia Resources: TN-L Mailing List Information

The Internet has proved to be a godsend for facial neuralgia victims, since it is a very convenient way for such a small and scattered group to communicate. This is particularly true for people with facial neuralgia disorders, who often find it difficult to talk and are therefore very limited in their communication. Mailing lists, in which e-mail is circulated among the members, have been found to be a particularly useful forum. At the moment, there is one mailing list, TN-L, specifically for people with facial neuralgia disorders.

TN-L is an electronic mailing list devoted to the discussion of Trigeminal Neuralgia and related facial neuralgia disorders. All email sent to TN-L is circulated to all members of the TN-L mailing list. Membership is free and it is easy to join. TN-L is not funded by any source. It is hosted by the University of Arkansas which graciously allows TN-L to use its computers.

Email from TN-L is archived at TN-L Archives, a password protected web site where email from TN-L members is accessible. A search tool makes it easy to find information in the archives. You must be a member of TN-L to access this website.

KEY TN-L INFORMATION

Host
University of Arkansas

List Owner
Polly Potter

Managers
Jet Duddridge and Allen Fields

Moderators
Jet Duddridge and Polly Potter

USEFUL ADDRESSES

TN-L Rules and Guidelines
http://facial-neuralgia.org/support/netiquette.html

To send messages to other members on the list:
tn-l@listserv.uark.edu

To send questions/messages to the TN-L List Administrator:
tn-l-request@listserv.uark.edu

To change email options, send listserv commands to:
listserv@listserv.uark.ed

List of Common TN-L email options and Listserv Commands:
http://facial-neuralgia.org/commands.html

To access the TN-L Archives:
http://listserv.uark.edu/archives/tn-l.html

TN-L is not affiliated with the Trigeminal Neuralgia Association but enthusiastically supports its goals.

Disclaimer
Any advice given on this list regarding diagnosis or treatments etc. reflects ONLY the opinion of the individual who posts the message. You are responsible for your own decisions.

It is known that from time to time, companies may troll the list for addresses for purposes of solicitation. Therefore, any health-related information you receive should be researched thoroughly. TN-L, the University of Arkansas, Massachusetts General Hospital and Harvard medical School do not endorse any companies or products.

This is Polly, the founder and moderator of TN-L. With compassion and hope, she guides and helps connect members to each other. She keeps us on topic and gently reigns us back when we're not.

What better way to capture the heart and soul of TN-L than the words of two TN-L members who made a presentation on TN-L at the Second Annual Trigeminal Neuralgia Conference in November 1998:

"TN-L is a discussion group on the Internet for people who want information and support for Trigeminal Neuralgia and facial pain diseases. Here you can speak with people who understand what you are feeling

Our doctors may provide us with medical treatment possibilities and pain medications. They may understand us from a neurobiological point of view. They cannot feel what we feel. They cannot know what we know about this rare disorder. But where can we go to heal our emotional wounds?

We can turn to each other, our fellow sufferers.

The ones who understand why we might find ourselves screaming in the darkest moments. The ones who have been there and are there too. Here we can find feedback to our most serious questions that the doctors cannot answer.

In this unlikeliest of places, we often find answers to our most desperate questions.

Sometimes the discussion is covered with medical scientifically accurate data, contributed by professionals in their respective fields.

Sometimes the route is traveled by those in tears and extreme distress in a valley from which there seems to be no return.

And one's weakness is bolstered by another's strength."

TNA Conference - November, 1998

What is the TN-L listserv?

The TN-L listserv is a living and constantly evolving thing-- it never stays the same.

The list is a novelist writing to heal itself. The list writes many novels and not all of them are readable.

We must forgive the list for not being perfect and remember the list is human and filled with bad moments that confuse and distort and make us feel sad.

But in those brief, rare times when everything is flowing in the right direction, when the stars in the sky are hanging just right, a healing is taking place, something of a religious miracle is being reborn, and many individual lives are saved in a compassionate orgy of sincere caring, sensitive understanding and empathy in another person's plight.

This is the listserv novelist at work, at its best, scaling new heights at once unfamiliar and then perfectly familiar once again.

And to get an even better idea of how special TN-L is, view the TN-L Slide Show that was presented at the 1998 TNA conference:

After you receive an email from TN-L acknowledging that you've been added to the TN-L mailing list, you will begin receiving any email sent by members of the list.

If for some reason you have problems joining TN-L, contact Polly Potter at
ppotter@uark.edu

Please note that the email address for sending mail to the group is different from the address for joining the list.

When you create a new message (not replying to a message), you should specify a subject to describe what your message is about, much like you do in an email message. To make it easier for readers to decided whether to read your message, it's a good idea to keep the subject line short and use key words, for example:

Often people want to discuss non-tn related things...it's natural as people become online friends. Some members prefer to get only email about facial neuralgia related topics. To make it easier to sort out which messages are "Off-topic," use the keyword "CHAT:" as the first word in the subject line. The topic keyword of CHAT: must end with a colon, followed by a space, before adding your own particular subject keywords. For example:

Members who prefer not to read CHAT email can send a command to exclude any email that begins with CHAT: See

For some people, the volume of daily email from the TN-L mailing list can be overwhelming. Others don't like the risks of getting a computer virus through email. An easy solution is set your TN-L membership so that no email is sent directly to you and to use your Internet browser (e.g. Netscape, Internet Explorer) to read TN-L email on the TN-L Archives.

Email from TN-L is archived at TN-L Archives, a password protected web site where all mail from TN-L members from 1996 is available only to TN-L members through a searchable web interface. These archives contain valuable information that TN-L members have shared over the years and can be an excellent resource in making connections with people and finding information on treatments, side-effects, specialists etc. A search tool makes it easy to find information in the archives. You must be a member of TN-L to access this website. The TN-L Archives can be accessed at: