Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.

Welcome!!!

Welcome! You're not alone.

If your family has been affected by Trigeminal Neuralgia, consider Living With TN Support Group your second home.

NOW....GET STARTED:

1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group
6. Follow us on Twitter
7. Become a fan to our Facebook

Read More from our First-Time-User Guide

Need a Doctor or Specialist?

Join Ben's Friends

Join the Greeters Group

Need a Second Opinion?

Disclaimer

All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment.

Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.

Members

Photos

Loading…
  • Add Photos
  • View All

Does Your TN Pain Have You Considering Suicide?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for information on where to call.

 

Videos

  • Add Videos
  • View All

Please Be Kind & Use Appropriate Language

Let's Keep it Nice & Clean
1. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos) in postings or Chat Room.  
4. Specific doctor or hospital names in a positive context are welcome. But we cannot permit negative public comment 
for legal reasons.
For expanded discussion see "Mission and Rules" in the top menu of our pages.

Thanks for your cooperation.
 
 

Mobile App and E-Book Available!

Keep in touch with friends. Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now!

Be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Welcome to Living with TN!

If you or a loved one is suffering from Trigeminal Neuralgia, this is the place for you. We are here for information, support, and friendship!

* Please keep in mind we are not doctors and don't treat TN. We are here for comfort and support. You should be consulting a doctor for treatment and advice.

** For members in the United States, IF YOU ARE THINKING OF SUICIDE AND IN IMMEDIATE NEED OF HELP, please feel free to call 1-800-273-TALK to get a referral. For international members, please visit  http://www.suicide.org/international-suicide-hotlines.html for information on where to call in your country.

Featured Pages

support sites are about the members, not the moderators. The model is collaboration, not authority or control – a model profoundly different from much of mainstream medicine and mental health. Doctor-patient collaboration and mutual learning are the model of the future. And Ben’s Friends are pointing the way. - See more at: http://wp.rxisk.org/i-get-by-with-a-little-help-from-my-friends/#sthash.HptGaxx5.i1Udz6De.dpuf
support sites are about the members, not the moderators. The model is collaboration, not authority or control – a model profoundly different from much of mainstream medicine and mental health. Doctor-patient collaboration and mutual learning are the model of the future. And Ben’s Friends are pointing the way. - See more at: http://wp.rxisk.org/i-get-by-with-a-little-help-from-my-friends/#sthash.HptGaxx5.i1Udz6De.dpuf

For information on Trigeminal Neuralgia

Type 1 and 2, see Fact Sheet.

A very useful one-hour film:  Dr Ken Casey speaks for an hour to a TN support group:  See Vimeo [May 2014]

===================
TN Patient Survey Underway

From a Facebook announcement:

Trigeminal Neuralgia is a challenge, not only because of the pain but also because of the lack of knowledge, awareness and statistical material. This is a survey is made for Tnnme Trigeminal Neuralgia and Me and it is ANONYMOUS. We are trying to get a better picture and statistics by asking you to please take a few minutes to fill out this survey.

This is one TN patient asking another, how are you? You matter and we'd love to know how you've been. Survey is done by Outi Elo from Finland assisted by Lorraine Burgess from Canada and Anu Parkkonen and Lari Tikkanen from Finland.

Our goal is to get a better understanding on your path from the first pain emerged, to you getting the right diagnosis, to how your pain is managed today, how it has affected your everyday life. Hopefully the analysis of this survey can provide better understanding for us TNers, Health Care Professionals, researchers and the public.

To reach as many sufferers as possible this survey will be posted in many different places, FB groups etc online. Please just fill it out ONCE. We appreciate that you answer all the questions as accurately as you can. Be sure to SUBMIT your answers at the end.

Outi Elo and Tnnme Trigeminal Neuralgia

http://survey.tnfinland.fi/index.php/437967/lang/en

====================
"I Get By With A Little Help From My Friends"

Ben's Friends and Living With TN have just been featured in an editorial on Rxisk, a UK website concerned with risks and side effects of medication. As written at the conclusion of the article, "support sites are about the members, not the moderators. The model is collaboration, not authority or control – a model profoundly different from much of mainstream medicine and mental health. Doctor-patient collaboration and mutual learning are the model of the future. And Ben’s Friends are pointing the way.

- See more at:[link]

==================
Survey of Patients Referred to Psychiatrists and Psychologists. 

The Ben's Friends support communities conducted a survey in February 2013.  We wanted to learn about your experiences (positive and negative), if you have been sent by a medical doctor to a psychiatrist, psychologist, or other mental health professional. Detailed results of this survey are now posted for Ben's Friends membership and the public. A summary of findings was published in the blog of Dr Allen Frances, MD, on Psychology Today.

Your voices are being heard.  A groundswell of protest is being registered by patients and psychiatric professionals alike, against publication of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) by the American Psychiatric Association.  For more on this controversy, feel free to visit "Patients Are Making a Difference"  [Last Update February, 2014]

Latest Activity

Patty left a comment for Zach Walraven
"good morning Zach. i hope this site gives you some direction. welcome here and i wish you many pain…"
18 minutes ago

Moderator
Richard A. "Red" Lawhern commented on Jackie's group I Feel Good (or wish that I could)!!
"Tinah, there is a golden rule in life as well as medicine: if a deal sounds too good to be true, it…"
1 hour ago

Moderator
Richard A. "Red" Lawhern commented on Ben's Friends Groups's group SUCCESS STORIES
"Tinah, there is a golden rule in life as well as medicine:  if a deal sounds too good to be…"
1 hour ago

Moderator
Gail C and Zach Walraven are now friends
1 hour ago
Dawn Monarch replied to madeleine's discussion What triggers your TN???
"Weather is also my BIGGEST trigger, the humidity bothers me bad too. Wet weather makes tn1 worse,…"
1 hour ago
Scott left a comment for Zach Walraven
"Greetings Zach,  Welcome to the best site for info and resources on TN! You will find many…"
1 hour ago

Moderator
Gail C left a comment for tabby
"Welcome Tabby, as soon as you can, would you please complete your profile to give us all a little…"
1 hour ago
Profile Icontabby, Zach Walraven and Callie joined Trigeminal Neuralgia (TN) - Online Support Group
1 hour ago

Top Discussions 

1 Anyone with tooth sensitivity from TN? If so, what meds relieve it?

Anyone with tooth sensitivity from TN? If so, what meds relieve it?

Posted by Woman with the electric teeth on June 26, 2014

2 Two Meds

Two Meds

Posted by Chippy on July 11, 2014

3 my cause?

my cause?

Posted by Jurie on July 7, 2014

4 So, So happy just have to share.

So, So happy just have to share.

Posted by dee on July 7, 2014

5 Anyone seen a pain management doctor?

Anyone seen a pain management doctor?

Posted by kayli on July 16, 2014

Blog Posts

Depression Phase

Posted by virginia girl on July 25, 2014 at 12:03pm 6 Comments

Doing Better

Posted by Philis Figgins Curry on July 25, 2014 at 4:33am 1 Comment

Has anyone tried Celexa?

Posted by Ronni on July 23, 2014 at 9:59pm 1 Comment

I'm Being Tested For Lyme Disease

Posted by Jamie on July 23, 2014 at 5:46pm 2 Comments

TN Medication possibilities

Anticonvulsants such as carbamazepine, oxcarbazepine, topiramate, phenytoin, or gabapentin are overall the most effective medications for Trigeminal Neuralgia.  Anti-convulsant effects may be potentiated with moderate to high levels of adjuvant therapies such as baclofen and/or clonazepam. Baclofen may also help some patients eat more normally if jaw movement tends to aggravate the symptoms.

Low doses of some antidepressants are known to be effective in treating neuropathic pain and atypical trigeminal neuralgia.  These drugs have been acknowledged in practice standards advocated by such organizations as the International Association for the Study of Pain (IASP).

Botox can be injected into the nerve by a physician, and has been found helpful using the "migraine" pattern adapted to the patient's special needs. Stellate ganglion block or other nerve blocks with Lidocaine, Xilocaine, or cortico-steroids are also used for short-term relief.  Some patients may also find relief by having their neurologist implant a neuro-stimulator.


If anticonvulsants do not help and surgical options have failed or are ruled out, the pain may be treated long-term with an opioid such as methadone, oxycodone or Duragesic in patch form. Opiate-based analgesics are not effective for many patients, but may be helpful for others. Opioid drugs do not directly address the neurological mechanisms which cause Trigeminal Neuralgia attacks, but may decrease the pain sensation that is experienced by the patient.

Many patients cannot tolerate medications for years with acceptable side effects.  An alternative treatment is to take a drug such as gabapentin in an externally applied cream base, after processing by a pharmacist who compounds drugs. .

For extended information - click here.
Or
TNA Information

or select the "Face Pain Info" tab in the top menu of any page on the site.

Reminder: unless a person states otherwise, we are not doctors but do have the same goals. Always consult your doctor about medications.

 

Disclaimer


This site is not intended to diagnose, prescribe, or replace the service of your physician, but solely to provide information to help enable you to make informed decisions about your health care, with the guidance of licensed health care professionals.

 
 
 

Help Us Help Others

Help Ben's Friends

Like, Follow & Forward Us!

Follow Me on Pinterest

To Support LivingwithTN.org, Click an Ad. Or Two.

Gift Store

Partners

BensFriends.org is proud to partner with a number of organizations to help our members in various areas, including legal, financial, research and medical. 

Know more about our PARTNERSvisit this link.

Badge

Loading…

© 2014   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service