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

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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

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ClinicalTrials.gov Studies

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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.
 
 

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]

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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

sara added a discussion to the group FAILED PROCEDURES
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post MVD, lots of pain and pressure NEED help please

I had my MVD about 20 months ago  in Northern California.I woke up with this horrible pressure on…See More
22 minutes ago
saraiderin posted a status
"Learned a lot of interesting things about TN on Sat. Oh the joys of crashing OHSU lectures. :)"
1 hour ago
Anne Z left a comment for Anne Z
"Thank you, everyone, for the warm welcome.  I will order a copy of Striking Back, and I did…"
2 hours ago
Chippy posted a blog post

Dentists and "the aftermath"

Teeth were as I call it "zinging" away before I went to the dentist wherein I needed a crown on a…See More
2 hours ago
tkal and Minty green are now friends
3 hours ago
randombreeze left a comment for Gail C
"Hello Gail, and many thanks for the nice welcome. Since having a small cyst removed from the left…"
3 hours ago
Siminative is now friends with Philis Figgins Curry and tkal
3 hours ago
randombreeze left a comment for Scott
"Thanks for the warm welcome Scott "
3 hours ago

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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