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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3. Post to a Forum
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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, or 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.
 
 

Featured Pages

For information on Type 1 and Type 2 Trigeminal Neuralgia 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 May 17, 2013]

UCLA Webinar on Face Pain

Dr. Neil Martin, Chairman of ULCA Neurosurgery will be hosting the webinar - Facial Pain - Diagnosis, Treatments and Latest Advancements - on Monday, May 20 at 12 pm PT. Registration information is listed below.

Learn about facial pain diagnosis, treatments and latest advancement from UCLA expert, Dr. Neil Martin, Chairman of UCLA Neurosurgery.

Register for the live-streaming webinar and join the conversation on Twitter at @UCLAHealth with hashtag #UCLAMDChat to ask Dr. Martin questions.

When: May 20, 2013

Time: 12:00 pm PST

Register: http://www.uclahealth.org/body.cfm?xyzpdqabc=0&id=173&action=detail&ref=2240

Forum

Red, hot Face

Started by Clare in General. Last reply by Clare 16 minutes ago. 5 Replies

Tegretol - playing around with dosage

Started by emil2y in General. Last reply by emil2y 1 hour ago. 8 Replies

TN & cold weather

Started by emil2y in General 1 hour ago. 0 Replies

Dental injury question...

Started by Dee in General. Last reply by Oldriska 2 hours ago. 12 Replies

post nerve block day 11

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

Welcome to LivingWithTN.org

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.

Latest Activity

Clare replied to Clare's discussion Red, hot Face
"Hi Lou Sorry you've been having so many problems. I am post menopause.  I had an MVD last…"
16 minutes ago
emil2y replied to emil2y's discussion Tegretol - playing around with dosage
"Thanks glider! So my memory issues are a side effect.. I thought as much. I have become sooooo…"
1 hour ago
emil2y posted a discussion

TN & cold weather

I'd like to know how you all cope during cold weather? I live on an island, Mauritius, so our…See More
1 hour ago
emil2y replied to emil2y's discussion Tegretol - playing around with dosage
"Thanks all for your feedback! I guess I will have to go back to my doctor. Temperatures have fallen…"
1 hour ago
Oldriska replied to Dee's discussion Dental injury question...
"I know from my neurologist that a far greater number of patients than dentists ever admit…"
2 hours ago
Oldriska replied to Dee's discussion Dental injury question...
"My pain started with infection which spread deep into my lower jaw and also with botched…"
2 hours ago
Kc Dancer Kc replied to thermotronica's discussion post nerve block day 11
"You've had it so rough lately ---- hope you can enjoy something out of the norm this weekend…"
2 hours ago

Moderator
Mimi replied to thermotronica's discussion post nerve block day 11
"Thermotronica, wow! I hope it continues! Any reduction in pain is awesome! Sorry you had to feel so…"
2 hours ago

Moderator
Mimi commented on ElaynaKraditzio's blog post Pease...
"Hi Elayna, So sorry you're in such pain. My bag of tricks is small, heating pad and emla cream…"
3 hours ago
thermotronica posted a discussion

post nerve block day 11

OK so I had a nerve block 10 days ago. It hurt really bad, soon after I got nausea, headache and…See More
3 hours ago

Moderator
Mimi left a comment for mags
"Welcome to LwTN mags, It's a great place for support and shared information. Please see our…"
4 hours ago
mags is now a member of Trigeminal Neuralgia (TN) - Online Support Group
4 hours ago
Cleo replied to Dee's discussion Dental injury question...
"here is a link for those interested in dental related trigeminal nerve…"
4 hours ago

Moderator
Mimi replied to Cheryl Davies's discussion Tooth pain
"Hi Cheryl, I too had one tooth that was in horrid pain, when I saw the dentist it was definitely…"
4 hours ago

Moderator
Mimi replied to michelle's discussion craniel adjustment for tn
"Cindy, I would just share your concerns with your doctor, schedule an appointment and ask him to…"
4 hours ago
CIndyStar replied to michelle's discussion craniel adjustment for tn
"Kinda worried, since my MD knows nothing about this disorder.  You folks are more help than…"
4 hours ago
ElaynaKraditzio posted a blog post

Pease...

Someone PLEASE tell me how to deal with this.  This week I have had 5 flares.   NOTHING helps. …See More
5 hours ago
Uncle David liked Vicki Dvorak's discussion Here's a Link to a Special News Report about TN
6 hours ago
Bellalarke replied to ErinRenee's discussion Just venting...
"Good news you're finding some relief, Thermo. Now to approach that killer anxiety... "
7 hours ago
Bellalarke replied to shepherdgirl's discussion April 2013 Reader's Digest
"I'm going to look for this too. Thanks. Sakbooch, I'd like to read your article. Can you…"
7 hours ago

Top Discussions 

1 How soon did you get an MVD after symptoms

How soon did you get an MVD after symptoms

Posted by mybell on May 2, 2013

2 20 days post MVD update

20 days post MVD update

Posted by Mimi on April 29, 2013

3 Had MVD 6 weeks ago today - I'm pain free!!

Had MVD 6 weeks ago today - I'm pain free!!

Posted by jyoung on April 23, 2013

4 For the newly diagnosed...

For the newly diagnosed...

Posted by Mimi on December 15, 2012

5 My experience with MVD- a detailed report

My experience with MVD- a detailed report

Posted by Manoj on April 26, 2013

Blog Posts

Pease...

Posted by ElaynaKraditzio on May 17, 2013 at 10:17pm 1 Comment

Things I wish for.............

Posted by a5150k9 on May 14, 2013 at 9:31pm 0 Comments

My Pain Has Moved

Posted by bigmamabull on May 13, 2013 at 10:10am 1 Comment

Referred pain

Posted by Rob on May 10, 2013 at 4:58am 1 Comment

TN Medication possibilities

Anticonvulsants such as carbamazepine, oxcarbazepine, topiramate, phenytoin, or gabapentin are overall the most effective medications for TN.  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 TN 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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