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.

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1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
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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.

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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.

 

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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 Member Survey

Thank you for taking time to participate in our survey.  We are so grateful that more than 1000 of you responded! We are now working on analyzing the data. We'll let you know of the survey results soon.

Ben's Friends Now a Non-Profit 501(c)(3) Organization

This enables all donations to be tax deductible (starting with any made from July 2013), makes us eligible for corporate donations and matching gifts, and gives us access to grants and foundations (dramatically widening our donor pool), and provides benefits reserved for nonprofits (such as Google Ads credits).
This status will help us realize our ultimate goal - to ensure everyone affected by a rare disease has a safe place to go (our communities!) to connect with someone like them.
Thank you, Members and Moderators, for hanging in there with us and never wavering as we went through this difficult process. Now the real work can begin!
If anyone has any ties to grants, foundations, or partners who can help 501(c)(3) organizations, or if you have any past experience writing grant applications, please email us at partners@bensfriends.org

Mobile App and E-Book Available for Download!

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

Learn how others cope and 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

"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]

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.)

Ben's Friends 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]

Forum

Amitriptyline side effects question

Started by Jennifer in General. Last reply by Jennifer 51 minutes ago. 2 Replies

Burning ears

Started by Jennifer in General. Last reply by Jennifer 53 minutes ago. 3 Replies

Dental work

Started by robyn holder in General. Last reply by Barbara Sammons 1 hour ago. 170 Replies

doctors and their lack of concern

Started by newmustangsally in General. Last reply by saraiderin 2 hours ago. 18 Replies

Help with pregnant daughter with treatment

Started by melly1955 in General. Last reply by melly1955 2 hours ago. 3 Replies

Latest Activity

Jennifer replied to Jennifer's discussion Amitriptyline side effects question
"I will!  I also wrote my doctor.  Thanks. "
51 minutes ago
Kc Dancer Kc replied to Jennifer's discussion Amitriptyline side effects question
"please call your pharmacist!    :  )"
52 minutes ago
Jennifer replied to Jennifer's discussion Burning ears
"Thanks I will try warm compress! "
53 minutes ago
Jennifer posted a discussion

Amitriptyline side effects question

Hi-Has anyone experienced a burning or crawling sensation on the back of head/neck/upper back after…See More
54 minutes ago

Moderator
Smiley left a comment for wilma
"Hi Wilma, Welcome to the community, heaps of new caring friends here, everybody is very kind and…"
55 minutes ago
Profile Iconwilma, BurnBabyBurn, Charlie W and 2 more joined Trigeminal Neuralgia (TN) - Online Support Group
57 minutes ago
LANded left a comment for Smiley
"Thank you! I am relieved to find a community like this one!"
58 minutes ago
BurnBabyBurn replied to Jennifer's discussion Burning ears
"Hi. I just joined, but I get burning deep in my left ear that travels down my jaw. I haven't…"
1 hour ago

Top Discussions 

1 Altering lifestyle & appearance to deal with TN

Altering lifestyle & appearance to deal with TN

Posted by flarakara on March 26, 2014

2 twitches

twitches

Posted by Brian M Howard on March 16, 2014

3 ATN Alternative suggestions?

ATN Alternative suggestions?

Posted by Emily on March 24, 2014

4 Am I a 'lucky' one

Am I a 'lucky' one

Posted by Prudence on March 24, 2014

5 Procedure

Procedure

Posted by Neeni on March 24, 2014

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.

Blog.BensFriends.org

Trigeminal Neuralgia (TN) - Online Support Group

New member says:


"Thank you so much for the welcome, SO happy to have found this site. :)"

Trigeminal Neuralgia (TN) - Online Support Group


Trigeminal Neuralgia (TN) - Online Support Group

New member says:

Thank you so much for the welcome. So happy I found a place to share and find information - (i need all I can get right now- so much to take in.) Many thanks to all.

Trigeminal Neuralgia (TN) - Online Support Group

"Thanks for the welcome."

“Thanks for the welcome.”

- a member from Trigeminal Neuralgia (TN) -  Online Support Group

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Best of Ben's Friends is a collection of inspirational or informative posts from across our family of patient communities. To nominate a post, discussion, photo, or video, email the link to info@bensfriends.org.

 

 
 
 

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