Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.

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Edster
Gail
Jackie C.
Mimi
MinC
Red
SF Bill
Smiley
Iamrite
Scott
Mary
 

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 information on Trigeminal Neuralgia

Type 1 and 2, see Fact Sheet.

A very useful two-hour film:  Dr Ken Casey speaks to a TN support group:  See Vimeo.

 

Forum

Gamma Knife Radiation Surgery

Started by Bels in General. Last reply by Dawn Monarch 32 minutes ago. 3 Replies

HiI am scheduled for this procedure on Sept 9. I was wondering if any of you has any experience with it? I had MVD surgery on Oct 24, 2014. It was successful but now I'm having pain in a different area. I had relief for a few months and it was…Continue

Rochester MAYO clinic

Started by Barb in General 1 hour ago. 0 Replies

Could anyone share any experiences that they had with the MAYO clinic in MN?

Very difficult time

Started by JPWYO in Symptoms. Last reply by DiDi 12 hours ago. 4 Replies

Hello everyone.  I am new here and am having a very bad time right now.  A few years ago, severe jaw/face pain started.  Diagnoses ranged from mini strokes in my face to teeth problems.  I got unnecessary root canals and extractions.  The episodes…Continue

Why does it hurt when I press here?

Started by Woman with the electric teeth in General. Last reply by itwouldntbemakebelieve 16 hours ago. 11 Replies

Hi, I'm currently reading Striking Back and have a question about something from Dr Kim Burchiel's list of "sorting out your face pain" on page 448. This is supposed to tell you what kind of face pain you have. On this list, the last question asks…Continue

Tags: Jaw, pain, Back, Striking, Kim

Latest Activity

Profile IconPoodle Mom, Liver, cindy and 1 more joined Trigeminal Neuralgia (TN) - Online Support Group
15 minutes ago
Dawn Monarch updated their profile
16 minutes ago
Dawn Monarch replied to Bels's discussion Gamma Knife Radiation Surgery
"Hi Bels,I also agree with Red and Mary,I also had gamma knife in 2004 and am still paying for…"
32 minutes ago
Barb posted a blog post

Mayo

Could anyone share their experience with the mayo clinic in Rochester mm?
1 hour ago
Barb posted a discussion

Rochester MAYO clinic

Could anyone share any experiences that they had with the MAYO clinic in MN?
1 hour ago

Moderator
Gail C left a comment for Liver
"Welcome. You have found a wonderful group here, filled with a wealth of information and support, as…"
1 hour ago

Moderator
Mary replied to Bels's discussion Gamma Knife Radiation Surgery
"Hi Bels.  I agree with Red.  I unfortunately had Gamma Knife March 2014 and have been in…"
4 hours ago

Moderator
Mary left a comment for Sally
"Hello Sally.  Welcome to the site.  There is plenty on here to read about and…"
5 hours ago

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Top Discussions 

1 MVD Booked for 7th Sept

MVD Booked for 7th Sept

Posted by borris on August 12, 2015

2 New here, have questions about TN - experiencing weird symptoms.

New here, have questions about TN - experiencing weird symptoms.

Posted by Vas on August 16, 2015

3 motor cortex stimulator

motor cortex stimulator

Posted by Ginger on June 23, 2015

4 New to TN

New to TN

Posted by Tayah on August 11, 2015

5 Symptoms to tell TN attack is coming

Symptoms to tell TN attack is coming

Posted by ShowMe_from_MO on June 12, 2015

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.

 
 
 

Help Us Help Others

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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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