Living with Trigeminal Neuralgia

We're here for your support.

A little bit about TN and us..

Trigeminal neuralgia (TN) or tic doloureux (also known as prosopalgia) is a neuropathic disorder of the trigeminal nerves that causes episodes of intense pain. Its nickname is "the suicide disease" because it causes one of the most severe pains that a human being can experience. The condition can bring about stabbing, mind-numbing, electric shock-like pain from just a finger's glance of the cheek.
There are estimated seven forms of TN: typical TN, atypical TN, pre-TN, multiple-sclerosis-related TN, secondary TN, post-traumatic TN (trigeminal neuropathy), and failed TN. These forms of TN should be distinguished from idiopathic (atypical) facial pain, as well as other disorders causing cranio-facial pain.

*Please keep in mind this is a support group of a wonderful collection of people with TN or a family, friend, coworker etc. Unless a person states otherwise, we are not doctors and don't treat TN but do have the same goals. To get comfort and relief from TN!~
Thank you for being part of our Support Group. A great thanks to family and friends who join and take interest with TN!
Disclaimer
This site is not intended to diagnose, prescribe, or replace the service of your physician, but solely to give you information to help enable you to make informed decisions about your healthcare with guidance of healthcare professionals.

Latest Activity

Kristi Boyer this site is some place to share - good or bad. when things were bad, this is where i needed to be. now it's better, and i'm here for others
3 hours ago
My pain has never gone away which of course made me wish this really wasn't my diagnosis but nothing else fits. I could not stay awake on a low dose of tegretol and lyrica made me feel like my brain was being overtaken by something weird. Thanks for…
5 hours ago
Ro, I read this to my family yesterday as I sobbed. They never understood why I took a pain pill before I ate and waited for it to take effect. They did not know why I had good and bad days. This helped a lot. Thank you ever so much. Monica
5 hours ago
Marcy is now friends with Kristi Boyer and Melodye Olsavsky
5 hours ago
Lisa, About the glands, according to my new neuro my TN might have started because of a swollen parotid (SALIVA) gland. It had been bad for about ten years, finally had it removed. It was twice it's normal size and had been pushing on everything in…
5 hours ago
Hi Lisa, Yes, if you have glands swelling etc, i would check with the doc especially if it came along right at the time of taking the meds. But, it may just be some 'bug' going around. best to be safe than sorry. Do mention the lows, blues to them…
7 hours ago
Lisa Vanessa Welch added a blog post
Hi Guys,i was told last Wednesday that i have T/N. I'd never heard of it before,and so you can imagine how i felt after i had a quick look at some of the info on-line!!!!!!! My doctor had given me Tegretol,the first couple of days seemed like a mira…
18 hours ago
Lisa Vanessa Welch and Ro ~ are now friends
18 hours ago
Liz K. updated their profile
18 hours ago
Aleshia left a comment for Ro ~
yesterday
You're Awesome Melodye! ~ such talent as is your daughter :)) Stay blessed, Ro~
yesterday
I am a 50-year old wife and mother (30 years in May to darling DanO). I have opened and closed so many chapters in my life. I am an artist and musician... I wanted to sing on Broadway and be an interior designer. I ended up accompanying a school dis…
yesterday
Ro ~ left a comment for Aleshia
yesterday
(btw - forgive my typo's ha! - i've become inperfect? imperfect? lol oh heck, not perfect yay! never was ;) )
yesterday
Ro ~ added a discussion
I've had a few people bring up that there is more to life than TN and I've encouraged people to talk of other things along with TN, that they may want to do..  Things that changed and you want to get back to.  We have a mix of people here of all age…
yesterday
yesterday
yesterday
yesterday
Liz K. left a comment for Marcy
yesterday
Marcy updated their profile
yesterday

Forum

Ro ~

Who are you really ? 4 Replies

Started by Ro ~ in General Discussion. Last reply by Ro ~ 1 day ago.

veronica buencamino

MediFocus guidebook on Gamma Knife Surgery 1 Reply

Started by veronica buencamino in General Discussion. Last reply by Ro ~ Feb 6.

Lauren

Cyberknife anyone? 27 Replies

Started by Lauren in Uncategorized. Last reply by Jimmy Works Feb 5.

Brian

I'm Home 10 Replies

Started by Brian in Sample Title. Last reply by Suzanne Marriott Feb 5.

joan quinn

Gamma-knife or injection? 8 Replies

Started by joan quinn in Sample Title. Last reply by Liz K. Feb 4.

Melodye Olsavsky

Diversions :-) 2 Replies

Started by Melodye Olsavsky in General Discussion. Last reply by Ro ~ Feb 2.

Sarah Woolley

Help 5 Replies

Started by Sarah Woolley in General Discussion. Last reply by Melodye Olsavsky Feb 2.

MalloryA

Coping with Atypical TN/Questioning Chiropractic Care 8 Replies

Started by MalloryA in Sample Title. Last reply by Liz K. Jan 31.

Brian

The Time is Here 4 Replies

Started by Brian in Sample Title. Last reply by Liz K. Jan 31.

Blog Posts

Lisa Vanessa Welch

New to all this

Posted by Lisa Vanessa Welch on February 8, 2010 at 1:01am — 2 Comments

Pamela Olson

What is Trigeminal Neuropathy

Posted by Pamela Olson on February 4, 2010 at 9:33am — 2 Comments

Lena

Deep Dark Place

Posted by Lena on February 3, 2010 at 5:35am — 9 Comments

Kerry

Sleep paralysis

Posted by Kerry on February 1, 2010 at 8:22am — 5 Comments

tom carr

atypical

Posted by tom carr on January 28, 2010 at 4:00pm — 3 Comments

tamina stewart

TN and being Pregnet

Posted by tamina stewart on January 27, 2010 at 6:15am — 3 Comments

Kerry

Silly me

Posted by Kerry on January 26, 2010 at 8:08am — 5 Comments

Diana Parker

New problem?

Posted by Diana Parker on January 24, 2010 at 10:31am — 7 Comments

Brian

Pre-op for MVD Surgery

Posted by Brian on January 22, 2010 at 8:48am — 7 Comments

TN Medication possibilities

Anticonvulsants such as carbamazepine, oxcarbazepine, topiramate, phenytoin, or gabapentin are generally the most effective medications. Generally speaking, opiate-based analgesics offer little relief from TN attacks, but may decrease the pain sensation that is experienced by the patient. Anticonvulsant 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.

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...

Low doses of some antidepressants are thought to be effective in treating neuropathic pain, but a tremendous amount of controversy exists on this topic, and their use is often limited to treating the depression that is associated with chronic pain, rather than the actual sensation of pain from the trigeminal nerve.
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.
Patients may also find relief by having their neurologist implant a neuro-stimulator.

Many patients cannot tolerate medications for years, and an alternative treatment is to take a drug such as gabapentin and place it in an externally applied cream base by a pharmacist who compounds drugs. Also helpful when remissions occur and rotating medications if one becomes ineffective.

For extended information - click here.
Or
TNA Information

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 give you
information to help enable you to make informed decisions
about your healthcare with guidance of healthcare
professionals.
 
 

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