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.

Join the Global Genes Webinar on Health Insurance Issues

Find out how you can better evaluate what option is best suited for your individual needs. Learn about the different types of health insurance and emerging trends in benefit design and affordability for individuals with rare diseases.

Join the  FREE Navigating Insurance Issues Webinar on April 30, 2014 at 10am PST / 1pm EST / 6pm in UKRegister Now!

For more information about the Webinar, visit this link.

Read more about Global Genes,a 501(c)3 (non profit).

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

"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

The Doctors TV show features TN Tuesday

Started by Sheila W. in General. Last reply by shepherdgirl 18 minutes ago. 13 Replies

pain at work

Started by Daniela in General. Last reply by catwoman 10 hours ago. 4 Replies

touching triggering pain

Started by BeaTwoHarps in General. Last reply by catwoman 10 hours ago. 1 Reply

Latest Activity

shepherdgirl replied to Sheila W.'s discussion The Doctors TV show features TN Tuesday
"That is the same thing I just thought! Hope you dh at least got an idea of the pain level. Dr.…"
18 minutes ago
Hopeful added a discussion to the group MVD's
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Taking the leap...

Trusting HIM...On Dec. 17, 2008 I was in a car accident. A VERY large U-Haul truck totaled our SUV!…See More
2 hours ago
flutterby left a comment for Jackie
"Hi Jackie, thank you for the warm welcome. I was diagnosed in 2009 but my TN started after 2 sets…"
5 hours ago

Moderator
dancermom left a comment for MonsterCat
"Welcome, MonsterCat, to this supportive community!"
6 hours ago
Profile IconMonsterCat, beachlittle, Judygundling and 6 more joined Trigeminal Neuralgia (TN) - Online Support Group
6 hours ago

Moderator
Smiley added a discussion to the group AUSTRALIA AND NEW ZEALAND MEMBERS
Thumbnail

Striking Back

Hi everyone,  I tried to get hold of the Striking Back book through the TN Facial Pain Association…See More
6 hours ago
Patty left a comment for beachlittle
"Hello beachlittle, it is nice to meet you. This site is great for information. Please feel free to…"
7 hours ago
Scared & Angry gal left a comment for sleary
"Hi Sleary, I am sorry  initially people thought you were lying and making up all your…"
7 hours 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 ATN Alternative suggestions?

ATN Alternative suggestions?

Posted by Emily on March 24, 2014

3 Am I a 'lucky' one

Am I a 'lucky' one

Posted by Prudence on March 24, 2014

4 Procedure

Procedure

Posted by Neeni on March 24, 2014

5 5-Point Scalp Acupuncture (Chinese)

5-Point Scalp Acupuncture (Chinese)

Posted by Adele Capozzoli on March 25, 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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