Trigeminal Neuralgia (TN) -  Online Support Group

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

Welcome

Welcome! You're not alone.

Getting 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

Read More from our First-Time-User Guide

Doctors List

Newsletter

Disclaimer

All of the material provided on this site is for informational purposes only and is not a substitute for professional medical advice or treatment.

Always seek the advice of your physician or qualified health provider with any questions regarding your health. Do not disregard professional medical advice or delay seeking it because of something you read on this site.

Members

Photos

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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

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Community Moderators

Have a question, concern, or suggestion? Or would you like to volunteer?

Please send a private message to a moderator.

==

Edster
Gail
Jackie C.
Mimi
MinC
Red
SF Bill
Smiley
Iamrite
Scott

Our Guidelines

Let's Keep it Nice & Clean
  1. Describe (share experiences), not Prescribe (suggest treatment for others).
  2. No spam.
  3. No personal attacks or defamatory posts.
  4. No offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos).
  5. No specific doctor or hospital name mentioned in a negative context, for legal reasons. Specific doctor or hospital names in a positive context are welcome.
  6. No sharing of members' posts to other sites without their express permission.
  7. No solicitations or promotions of goods or services. No fundraising without the permission of the moderators.
  8. No email addresses or phone numbers on the forum, for your security.
  9. Religious content must be restricted to the prayer group.
  10. No politics, please.

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

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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.

Latest Activity

catwoman replied to mamaof2's discussion TN or ATN
"You know what? I don't think there's any two of us on here with ATN have have all our…"
9 minutes ago
mamaof2 posted a discussion

TN or ATN

I've had TN for 5 years now. I've had bad flares from time to time but nothing like I've been…See More
39 minutes ago
catwoman replied to Susan Mella Schwartz's discussion Tergernol give me hope please
"I found it took me around 10 days, both when I started and when I doubled the dose. Persevere…"
58 minutes ago
LB replied to LB's discussion Is Lyrica (Pregabalin) safe for "pins & needles" sensations 4 months after surgery for TN?
"Pago, Thank you so much for sharing your experience. That's wonderful you no…"
1 hour ago
Tineline replied to Tineline's discussion The most interesting non-TN-related thing you heard/saw/read/did today
"Sounds like heaven to me. Makes me miss my log cabin on a lake in the Norwegian mountains. Only 20…"
2 hours ago
Tineline replied to Tineline's discussion Trigger free entertainment? I am so bored...
"Tree, those are all really good suggestions! Especially the writing and photography is spot on. I…"
2 hours ago
Jae replied to LB's discussion Is it anesthesia dolorosa?
"Hi this is Jae.  I want to retract information for the Laser Med Center in Myrtle Beach, South…"
3 hours ago
Liam replied to LB's discussion Is it anesthesia dolorosa?
"Hi Nina, Thanks for the info on acupuncture. I very nearly tried it last autumn after my 2011…"
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Blog Posts

Middle of the night

Posted by Abby on May 23, 2015 at 12:56am 1 Comment

Occipital neuralgia

Posted by Debbie Sutton on May 20, 2015 at 7:39am 0 Comments

Scar Tissue

Posted by Amynay on May 18, 2015 at 2:12pm 0 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.

 
 
 

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