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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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

Nerve combing surgery

Started by Laura Oregon in General. Last reply by Laura Oregon 11 minutes ago. 38 Replies

capsaicin liquid

Started by Beth in General. Last reply by dodo 35 minutes ago. 4 Replies

Latest Activity

houston man replied to Mimi's discussion 12 months post-op MVD/ 1 year anniversary
"Mimi, let me start with how sorry I am that you are still having so much trouble from this beast in…"
27 seconds ago
MSandTN replied to Duskfire's discussion Does anyone have a reaction to electricity or metal?
"OMG! I have a variation that, which is painful in my teeth as well. i have to remove myself from…"
5 minutes ago
studentNpain commented on Pierre's blog post hot and cold sensitive teeth
"Yes, I have temperature sensitivity at times and try my best to keep food and liquids on the…"
7 minutes ago
Laura Oregon commented on Kelli/TN go away!'s blog post Facial Numbness after MVD
"I had surgery almost 12 weeks ago.  My whole side of my face was numb as well. I still have…"
9 minutes ago
Laura Oregon replied to Laura Oregon's discussion Nerve combing surgery
"Hi all, It's been quite a while since I've posted anything even though I lurk everyday.…"
11 minutes ago
Laura Oregon is now friends with Deanne1407 and Irene
33 minutes ago
dodo replied to Beth's discussion capsaicin liquid
"Thank you beth for faithful words.. You are true I fail my life just hell & when I am in…"
35 minutes ago
coffeehouse is now friends with saraiderin and Beth
2 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 5-Point Scalp Acupuncture (Chinese)

5-Point Scalp Acupuncture (Chinese)

Posted by Adele Capozzoli on March 25, 2014

3 constant pain

constant pain

Posted by Tonii on March 25, 2014

4 The Last 3 Miserable Days

The Last 3 Miserable Days

Posted by Cherri on March 25, 2014

5 Sadness after MVD:(

Sadness after MVD:(

Posted by doulanana on March 26, 2014

Blog Posts

Facial Numbness after MVD

Posted by Kelli/TN go away! on April 24, 2014 at 10:17am 1 Comment

Preliminary Diagnosis

Posted by BurnBabyBurn on April 23, 2014 at 10:25pm 1 Comment

Neurology appointment

Posted by coffeehouse on April 22, 2014 at 6:01pm 2 Comments

Never give up.

Posted by Armando Abrero on April 20, 2014 at 4:08am 0 Comments

Never give up.

Posted by Armando Abrero on April 20, 2014 at 4:08am 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.

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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