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

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

ClinicalTrials.gov Studies

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.
 
 

Ben's Friends Fundraiser

Hi Past & Present Ben's Friends Supporters! 
We really need your help. Our annual Ben's Friends fundraiser is way below goal. So far we are at $14k with many generous donations. But at the very least we need to be at $25k, and ideally at $35k or above. 
We're probably the most efficient non profit in the world, helping 125,000 patients per month with a budget of $3k per month. But even we can't survive on $14k. 

Please donate at our super easy Donation Page at Ben's Friends . A $5 donation will make a big donation. Everything is tax deductible!

We realize most members aren't in a position to donate. Those members can help by spreading the word about the fundraiser on the communities and on Facebook. 

We need your help to keep Ben's Friends alive and going strong!
We really need your help! Please donate, even if it's $5, that will really help.

Thanks!
Scott
(Co-Founder of Ben's Friend)

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 two-hour film:  Dr Ken Casey speaks for an hour to a TN support group:  See Vimeo.

"It's NOT All in Your Head!  On August 6th, 2014, one of our moderators participated in a wide ranging Internet interview, discussing the damage caused by psycho-somatic medicine to chronic pain and rare disorder patients.  To hear the interview, visit the Doctor Peter Breggin show on the Progressive Radio Network.

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

A patient to patient survey of TN sufferers has been announced on Facebook [Tnnme Trigeminal Neuralgia].  To participate, please just fill it out ONCE. Be sure to SUBMIT your answers at the end.

See Survey. 

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

Ben's Friends and Living With TN are 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 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.

Forum

feeling defeated and in ALOT of pain

Started by PrincessParsons in General. Last reply by Sara 8 minutes ago. 6 Replies

I am having my MVD soon have questions

Started by KATTHOMPSON4 in General. Last reply by Sue 7 hours ago. 16 Replies

Success Stories

Started by Scott Orn in General. Last reply by StephenLMT 11 hours ago. 107 Replies

Word Retrieval

Started by Jackie in General. Last reply by Hope 13 hours ago. 87 Replies

Hi Everyone

Started by Carol Harmer in General. Last reply by elstep 13 hours ago. 7 Replies

Latest Activity

Sara replied to PrincessParsons's discussion feeling defeated and in ALOT of pain
"Thank you for posting and giving me the opportunity to respond. It's easier than just…"
8 minutes ago
Sara replied to PrincessParsons's discussion feeling defeated and in ALOT of pain
"I say all this after trying everything. I've had this for 16 years, since I was only 14.…"
10 minutes ago
Sara replied to PrincessParsons's discussion feeling defeated and in ALOT of pain
"One thing that gives me relief is peppermint oil, but only for about 10 minutes. Another is ice and…"
33 minutes ago
Sara posted a status
"Struggling. Pain so bad I find my mind repeating that I want to die."
37 minutes ago
Cindy updated their profile
3 hours ago
Yakub left a comment for OSUBUCKS1
"I had this pain first time in 1963 on right side which ended in surgery after 2 years no pain since…"
6 hours ago
Sue replied to PrincessParsons's discussion feeling defeated and in ALOT of pain
"I am so sorry you are going through this... No one knows who hasn't been there.  They can…"
7 hours ago
Sue replied to KATTHOMPSON4's discussion I am having my MVD soon have questions
"Hey! I just had an MVD and one of the worst parts was not being able to wash my hair for 10 days…"
7 hours ago

Blog Posts

Need Answers, Got any?

Posted by RCBatty on January 20, 2015 at 5:15pm 1 Comment

A Sunshine story

Posted by Bonny on December 31, 2014 at 2:09pm 1 Comment

News (finally!!!)

Posted by IllustratorK on December 26, 2014 at 8:55pm 1 Comment

After 10 months

Posted by Dcblacqua on December 26, 2014 at 10:08am 1 Comment

Laughter in spite of the pain.

Posted by saraiderin on December 21, 2014 at 11:15pm 4 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 Us!

Follow Me on Pinterest

Give Us A Review

Bens Friends

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…

© 2015   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service