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
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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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Community Moderators

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

Please send a private message to a moderator.

Cheryl
Crystalv
Edster
Gail
Jackie C.
Kari
Mimi
MinC
Red
SF Bill
Smiley
Stef

Please Be Kind & Use Appropriate Language

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, please.
  9. We welcome people of any faith and no faith, but we ask that you not evangelize or attempt to impose your belief system on other members.
  10. Check your politics at the door, please.

Thanks for your cooperation.

 

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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.

===================
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.

Forum

Change in Meds

Started by Bosltov in General. Last reply by Kc Dancer Kc 2 hours ago. 3 Replies

MVD Question

Started by KATTHOMPSON4 in General. Last reply by Kc Dancer Kc 2 hours ago. 23 Replies

Cymbalta

Started by OSUBUCKS1 in General. Last reply by Kc Dancer Kc 2 hours ago. 1 Reply

Autoimmune diseases, B12 deficiency - is there a connection with TN???

Started by Woman with the electric teeth in General. Last reply by Woman with the electric teeth 9 hours ago. 36 Replies

Latest Activity

Kc Dancer Kc replied to Bosltov's discussion Change in Meds
"Call pharmacist! Those meds are cousins i believe. : )"
2 hours ago
Kc Dancer Kc replied to KATTHOMPSON4's discussion MVD Question
"Im glad you are back! Keep us posted!"
2 hours ago
Kc Dancer Kc replied to OSUBUCKS1's discussion Cymbalta
"I would call trusted pharmacist! They know side effects! Cymbalta can be good...but hard to get…"
2 hours ago
Shana and Michelle are now friends
3 hours ago
Shana left a comment for Patty
"Hi Patty! Thank you so much for the welcome and encouraging words. I can't wait to check out…"
3 hours ago
Shana left a comment for Scott
"Hi Scott! Thank you for the warm welcome!"
3 hours ago
Shana left a comment for Shana
"Thank you Scott and Patty! Striking Back sounds like it would be a helpful read for me--thank you…"
4 hours ago
Woman with the electric teeth replied to Woman with the electric teeth's discussion Autoimmune diseases, B12 deficiency - is there a connection with TN???
"You should definitely look into thyroid. It's a simple test or tests, depending on what you…"
9 hours ago

Blog Posts

Nerve block

Posted by Kimberly on March 26, 2015 at 11:02am 0 Comments

Good Moring. Symtoms

Posted by David on March 25, 2015 at 10:36am 0 Comments

Driving with TN1

Posted by John787 on March 22, 2015 at 6:00pm 1 Comment

Local Fundraiser for Ben's Friends

Posted by Scott Orn on March 22, 2015 at 10:34am 0 Comments

need for a talk...

Posted by saraiderin on March 16, 2015 at 5:33pm 1 Comment

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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